ITEM 7 Carers Strategy
North Lanarkshire Council · 22 May 2024
Back to IJB Performance, Finance and Audit Committee — 22 May 2024 and its agenda
Text extracted from the council's PDF. Layout and reading order may differ from the original.
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1 REPORT Item No: 7 SUBJECT: Supporting Unpaid Carers and North Lanarkshire Carers Strategy 2024 -2027 TO: IJB Performance, Finance and Audit Committee Lead Officer for Report: Morag Dendy, Head of Planning, Performance and Quality Assurance Author(s) of Report Maria Williamson, Senior Manager, Quality Assurance DATE: 22 May 2024 1. PURPOSE OF REPORT This report provides a progress update on actions taken to support unpaid carers, over the past year, following extensive carer engagement and participation activity themed around “what might help?” Previous reporting to the IJB outlined our planned approach to strengthen supports to unpaid carers. A number of carer led and carer informed initiatives have been introduced over the past year. These initiatives have been part of Quality Assurance’s wider approach to engagement with, and the participation of, carers and carer organisations; developing market facilitation, to help broaden choice, control, and support options for both carers and supported people. The report seeks committee approval for North Lanarkshire Carers Strategy 2024 – 2027, and endorsement on the approach to supporting Carers. This paper is coming to the IJB PFA for: For approval ☒ For endorsement ☒ To note ☐
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2 2. ROUTE TO THE BOARD This paper has been: Prepared By: Morris Howat, Service Manager, Quality Assurance ☒ Reviewed By: Maria Williamson, Senior Manager, Quality Assurance ☒ Endorsed By: Morag Dendy, Head of Planning, Performance and Quality Assurance ☒ 3. RECOMMENDATIONS It is recommended that the Integration Joint Board: (1) Approve the North Lanarkshire Carers Strategy 2024 2027 (2) Endorse the approach to supporting Carers in North Lanarkshire (3) Note the range of supports to unpaid carers available locally. 4. VARIATIONS TO DIRECTIONS? 5. BACKGROUND/SUMMARY OF KEY ISSUES Background 5.1 Scotland’s national and local public bodies are committed to improving the ways individual people, and communities are engaged in decision-making that affects them. This is particularly relevant to the development of the health and social care services upon which we all rely. (Source: Planning with People; Community engagement and participation guidance. (Published by COSLA and The Scottish Government 2021) 5.2 North Lanarkshire has a strong history of engagement and participation and long-standing relationships with supported people, carers, and community organisations. This approach has ensured that the citizens of our area can influence, inform, and shape local policy, strategy, and services. We are Yes ☐ No ☐ N/A ☒
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3 committed to ensuring ongoing meaningful engagement with the communities we serve. 5.3 The approach to engagement and participation has helped carers, supported people and carer focused organisations influence and shape the range of carer services described within this report as well as our local Carers Strategy 2024 -2027 (appendix 9.1). 5.4 Whilst we are far from immune to many of the themes and negative carer experiences outlined in the State of Caring Report (Carers Scotland, published 2023), local carer experience has been significantly more positive than that reported nationally. The Care Inspectorate inquiry into people's experience of support within North Lanarkshire, including carer experience, as well as carer feedback through engagement and participation activity related to the Carers Strategy 2024 - 2027, have both demonstrated that we are performing consistently higher than the national average regarding most, if not all, aspects of carer support. Lanarkshire Carers Centre report that several of the initiatives outlined in this report have generated significant interest from other areas, due to both their innovative nature and the efficacy of the approaches being taken. Similarly, NLCT highlight that Carer Breather has attracted similar levels of interest. All these approaches have resulted in a demonstrably more positive local picture. Report 5.5 Relationships with a wide range of carer focused organisations in supporting and facilitating engagement and participation has been a significant factor in our collective approach to date. Input from carer focused organisations has proven invaluable generally, but particularly so regarding parent carers, carers from minority ethnic backgrounds and LGBTQI+ carers. 5.6 To date, initiatives to support carers have included: 5.6.1 An innovative Hospital Discharge Payment Scheme for Carers offering a one- off payment of £1,000 to families to support their loved one for the first 6 weeks out of hospital. This was introduced to ensure people did not remain in hospital for any longer than needed to reduce the risk of delayed discharge arising from prolonged wait times for people who required support upon hospital discharge, but where social care provision could not be guaranteed due to difficulties arising from the pressures around social care recruitment, retention, and staffing. Initially introduced as a pilot \ demonstration scheme, ninety carers and ninety cared for people have benefited from this scheme to date, at a cost of £90,000. This expenditure compares very favourably when set against both the financial and human costs of delayed discharge. Although the scheme ended on 31st March 2024, further evaluation will help inform future options. 5.6.2 Expansion of Carer Breather. Designed in partnership with carers in North Lanarkshire, Carer Breather is a pioneering initiative that not only supports carers to have time out, but also ensures carers have better access to their communities and works to reduce loneliness, isolation and foster friendships
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4 and relationships. The second round of funding for Carer Breather services was allocated to 11 organisations across North Lanarkshire. Funding is being used to provide breaks to carers from their caring roles in their local communities. These breaks allow carers to access time-out a few hours per week to focus on themselves in ways that support overall wellbeing. Some services provide support for carers at the same time as providing support for the person they care for. This reflects requests from carers that they can access support that allows them to enjoy some joint time-out to relax in a community setting. Carers can self-refer to the Carer Breather services by contacting organisations directly. The range of Carer Breather services sits within a much wider range of carer break options, with the Lanarkshire Carers Short Breaks Bureau, Time to Live Funding and individual Carer Budgets ensuring that carers can exercise choice and control in accessing the type of break most in keeping with their individual needs. 5.6.3 Increased funding to PAMIS (Profound and Multiple Impairment Service) to build capacity in the PAMIS Family Support Service, offering support to families caring for a family member with complex multiple disabilities. Around 160 families in North Lanarkshire are currently supported through this service. The nature of carer support goes beyond that offered by the three commissioned carer services (Lanarkshire Carers Centre, North Lanarkshire Carers Together and Action for Children, Young Carers) as experience has shown that support around issues like postural drainage, daily stretching, physiotherapy, and specialist toileting techniques all require carers to have specialist knowledge. 5.6.4 Introduced support for carers supporting a family member with Dementia, through an Alzheimer’s Scotland. The service provides holistic support to carers of people who have been diagnosed with dementia with a focus on meeting the needs and improve the quality of life, physical and mental wellbeing of carers of people with dementia to reduce stress and distress, maintain a healthy live/work balance and a reduction in the people with dementia being admitted to long term care. 5.6.5 An extended 3-year contract for HOPE for Autism, removing the uncertainties arising from the year-to-year annual funding that was in place previously. HOPE provides an all-age information and advice service for people with Autism, family members, carers, and professionals. Our approach was further augmented by an investment in practitioners from Autism Network to ensure that families have access to specialist knowledge locally around neurodivergence and the challenges that can arise around neurological conditions. 5.6.6 Further investment in Lanarkshire Carers to enhance existing programmes of carer support. An update from Lanarkshire Carers is included as appendix 9.4. 5.6.7 Continued support for Action for Children Young Carers Project who directly work with young carers to complete Young Carer Statements, assessments, reviews, and referrals for the young carer service. An update from Action for Children Young Carers is included as appendix 9.6.
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5 5.6.8 Improved development opportunities for Social Work staff around commissioned organisations, Adult Carer Support Plans, carer budget processes and Young Carer Statements. 5.6.9 Organising carer awareness events in tandem with the Assistive Technology team, to promote the uptake of assistive technology as a means of supporting both carers and those being cared for as a means of maximising independence, minimising risk, and encouraging a pro-active preventative approach. 5.6.10Hosting the first Commitment to Carers Event, celebrating the positive developments around carer support, as well as hearing the challenges being faced by carers. The second Commitment to Carers Event took place on 21st May 2024. 5.6.11 Supporting a range of engagement and participation activity aimed at all carers, but with a focus on underrepresented individuals, groups, or communities, including carers from minority ethnic communities and LGBTQI+ communities. 5.6.12 The continued promotion of Carer Budgets (where applicable) and support around innovative use of these. Most carers who are known to services are supported through the wider carer support infrastructure described in this report. In every situation where a cared for person is in receipt of an individual budget, the unpaid caring situation is also considered, and individual budgets are adjusted accordingly to take account of that. In addition, there are around eighty carers who are in receipt of an individual carer budget. 5.6.13 Preparatory work is being undertaken in anticipation of revised legislation around the right to carer breaks, including an updated Short Breaks Statement. The approach continues to be in line with a wider ethos of supporting and enabling self-help, enablement, and empowerment, so that wherever possible, carers use their own family and friends’ networks to facilitate breaks from caring, rather than rely on statutory services. As such, our approach to carer breaks will continue to be based on self-help first, and only when those possibilities either do not exist, or have been fully explored, should funded support around carer breaks be required. 5.6.14 Developments in carer support around Dementia and Autism described above at 5.6.4 and 5.6.5 were informed by findings from the most recent national Carer Census, where these two conditions, along with age related frailty, were identified as being the three largest areas of caring responsibility. In relation to frailty, North Lanarkshire has been a pathfinder area in the national Getting it Right for Everybody (GIRFE) approach where it is anticipated that learning from engagement with people with lived experience will lead to further innovation in our approach and within any services provided. 5.6.15 Additional investment with North Lanarkshire Carers Together (NLCT) to fund an Equalities post, ensuring that underrepresented communities have access to carer related information, signposting, campaigning, and carer advocacy. An update from NLCT is provided as appendix 9.5.
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6 5.6.16 In addition to the detail noted above, a wide range of community and voluntary sector organisations, including those with an age related, or condition specific focus, have been in receipt of North Lanarkshire Council funding and have had a role in direct, or indirect, support to carers as well as supported people. Work around monitoring and quality evaluation regarding carer support across these organisations took place throughout the year to ensure that our approaches are not solely carer and supported people informed, but carer and supported people led. 5.6.17 Facilitating participation, particularly with harder to reach groups and those who experience exclusion, is achieved through reaching out, finding out, making connections, and presenting opportunities. Investment was made to develop networks, connect people with shared experiences, help with sharing information, identifying issues that are important to carers, supported people and communities in North Lanarkshire and delivering approaches to improve carer wellbeing. There has been direct representation in governance structures and strategic forums, involvement in improvement areas, consultation, and co- production, with identified actions that further engagement and participation in our day-to-day practice. Locally we want to ensure that we have the best possible approach to engagement with, and participation of, supported people and unpaid carers. 5.6.18 These fit with key drivers that supports a preventative and anticipatory approach and helps ensure that people can live independently and are supported within their own networks and communities. We also seek to ensure “lived experience” can influence and shape strategic direction, policy, and support services. The Carers Scotland: State of Caring Report (appendix 9.2) presents a bleak picture nationally regarding carer experiences, using the term “health and social care crisis”. The report states that “Despite their huge contribution to the Scottish economy, to our communities and to the lives of the people they care for, carers are facing deteriorating physical and mental health, loneliness and isolation with too many driven to despair and denied access to the very supports they need to maintain a healthy life.” Whilst we cannot be complacent, the local picture is much more positive, largely due to the range of support options described above, alongside the range of carer support services offered by the three commissioned carer organisations and the wider community and voluntary sector. Carers face a wide range of challenges, so a wide range of responses is needed. Based on engagement with carers, we are confident that the supports and services that are in place are the right ones, but equally, that yet more can be done, both in terms of ensuring that carers experience a consistent approach and in developing further innovative solutions to meet caring related outcome and need. 5.6.19 The Analysis of Carers (Scotland) Act 2016 funding 2022-2023: responses to Freedom of Information request (released March 2024) (appendix 9.3) notes that the unallocated spend in North Lanarkshire related to Implementation of the Carers (Scotland) Act 2016 stood at £1,032,017. This figure is based caring related spend reported to Committee in 2022. Since then, there has been further investment in the carer support options described above, with most of the remaining balance aligned to approaches and developments outlined in our
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7 Carers Strategy 2024-2027. A small amount was also retained to mitigate any impact that may have arisen from waiving of charges. The range of support described above, and the overall approach, demonstrates that we are already meeting the main recommendations of the report: Providing significantly more funding directly to third sector organisations (including Carer Centres) to expand and develop services to support unpaid carers, including a wider range of short breaks opportunities. Ring-fencing Carers Act funding and developing consistent budget headings for use by all local areas. Developing financial reporting processes to ensure robust tracking, monitoring, and forecasting of spend under each budget heading. Ensuring that our Annual Performance Reports provide details of support for carers / Carers Act implementation and Annual Accounts provide figures for Carers Act funding, to improve transparent reporting of impact and spend. 5.6.20 The current commissioned Carer contracts are due to end in February 2025. In line with statutory procurement rules, we will be required to begin the process of retendering for carer services later this year. This will be an opportunity to further enhance and align carer support, as set out in the Carers Strategy 2024- 2027, and any remaining balance of funding, as described in 5.6.19 can be utilised to further augment carer led innovative approaches and solutions to meet caring related needs and outcomes. 5.6.21 Earmarked reserves from the allocated funding to support The Carers Act Implementation are noted below: EARMARKED RESERVES Opening Balance as at 1 April 2023 Transfers To / From Reserves Drawdown from Reserves Revised Balance as at 28 February 2024 £m £m £m £m Carers Act Support 2.643 0.058 0.105 2.596 This and directed funding allocated for Carers support will be used to procure and deliver services that continue to support Carers across our communities. North Lanarkshire Carers Strategy 2024-2027 5.7 The Carers (Scotland) Act 2016 stipulates that each local authority and relevant health board must jointly publish a local carer strategy and that this should be reviewed three years after the integration start date; or the date a replacement strategic plan takes effect after a strategic plan has been reviewed; or the date the integration authority has decided not to prepare a replacement strategic plan following such a review.
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8 5.8 The Carers (Scotland) Act 2016 further stipulates that before preparing a local carer strategy, the local authority and the relevant health board must carry out extensive consultation. As is evidenced throughout this report, the range of engagement and participation activity informing our new Carers Strategy 2024- 2027 has been extensive, and we will continue with that approach over the lifespan of the new strategy. 5.9 The previous Carers Strategy was issued as a partnership update in 2019, due to the impacts of COVID and due to the circumstances at that time, did not involve as extensive a consultation or engagement process as we would otherwise have undertaken. As such, the 2019 Strategy was a refreshed updated version of the 2015 Carers Strategy. During the intervening period between 2015 and now, the Carers (Scotland) Act 2016, enacted 2018, was introduced, and the COVID 19 pandemic occurred. . Measures of Success 5.10 Carers are engaged, included, and represented to the extent they wish to be. 5.11 Creation of better opportunities for under-represented and seldom heard carers to participate and have their voices heard. 5.12 Improved opportunities for carers to influence, shape, co-produce and \ or co- design policy, strategy, and services. This goes beyond caring related policy or strategy, as through good design and engagement, the needs of carers and cared for people can be incorporated into wider policy and strategy. 5.13 Provision of approaches which can be influenced and shaped by the engagement and participation activity set out above. 5.14 Clear focus on the nine priority areas for action that carers have identified as a priority for them, as set out in the Carer Strategy 2024-2027. Improving preventative approaches, anticipatory and future planning (and preventing crisis). Improving communication with carers and their access to information and advice. Ensuring carers know their rights. Supporting carers health and wellbeing Ensuring carers get a break from caring. Ensuring carers, and people being cared for, have their income maximised. Improving carer experience around hospital discharge. Improving awareness of and access to Assistive Technology. Influencing and shaping policy and strategy. 5.15 Reduction in the number of carers and \ or supported people first presenting whilst already in crisis.
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9 6. CONCLUSIONS 6.1 The approach to both carer support and the Carers Strategy 2024-2027 continue to be based on the principles of the Carers (Scotland) Act 2016 and Self-Directed Support (Scotland) Act 2013. Self-Directed Support (SDS) continues to be Scotland’s national Social Care policy, promoting a whole system approach that enables people to have more choice and control in their lives. SDS is based on enhancing the principles of participation, dignity, involvement, informed choice, and collaboration. 6.2 The aspiration is to offer a sustainable and innovative means to achieve the outcomes that carers, as well as supported people, identify as being important to them. Through these initiatives, carers can lead full and meaningful lives, and ensures that people can engage in, participate in, and contribute to the local economy and wider society, should that be their choice. The wider approach also encompasses the principles of Getting it Right for Everyone (GIRFE) and Community Wealth Building. Carers, carer focused organisations and University Health and Social Care North Lanarkshire (UHSCNL) have, over time, developed a very robust carer support infrastructure, and our Carers Strategy 2024-2027 seeks to utilise this to best effect. 6.3 The requirement to draft the 2024 - 2027 Carers Strategy gave us the opportunity to undertake extensive engagement and participation activity with carers and supported people. This has resulted in a carer led and carer informed strategy, co-produced with carers and carer organisations locally. The sense of “joint ownership” that has emerged is something that carers, carer organisations and UHSCNL can be proud of. 7. IMPLICATIONS 7.1 NATIONAL OUTCOMES Link(s) to National Health and Wellbeing Outcomes People are able to look after and improve their own health and wellbeing and live in good health for longer ☒ People, including those with disabilities or long-term conditions, or who are frail, are able to live, as far as reasonable practicable, independently and at home or in a homely setting in their community ☒ People who use Health and Social Care Services have positive experiences of those services, and have dignity respected ☒ Health and Social Care Services are centred on helping to maintain or improve the quality of life of people who use those services ☒ Health and Social Care Services contribute to reducing health inequalities ☒ People who use Health and Social Care Services are safe from harm ☒ People who work in Health and Social Care Services feel engaged with the work they do and are supported to continuously improve the information, support, care and treatment they provide ☒
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10 Resources are used effectively and efficiently in the provision of Health and Social Care Services ☒ 7.2 ASSOCIATED MEASURE(S) 7.3 FINANCIAL This paper has been reviewed by Finance: Earmarked reserves and directed funding allocated for Carers support will be used to procure and deliver services that continue to support Carers across our communities. 7.4 RISK ASSESSMENT/RISK MANAGEMENT Relevant Risk Register Details Current Risk Level Risk Owner n/a Choose an item. 7.5 ENGAGEMENT & PARTICPATION Please tick the engagement and participation objectives that link(s) with this piece of work and provide further details regarding the engagement and participation that was undertaken. Objectives Further Details ☒ Involve stakeholders in the development work aimed at achieving the national Outcomes Through commissioned carer support organisations locally. ☒ Provide stakeholders with information on how to get involved Through commissioned carer support organisations locally. ☒ Ensure a diverse range of engagement and participation and opportunities are in place to suit different needs Through commissioned carer support organisations locally. ☒ Measure how well we involve community stakeholders in the planning, design and delivery of our services Through commissioned carer support organisations locally. Through participatory self-appraisal. Yes ☒ No ☐ N/A ☐
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11 Through monitoring and assurance. ☒ Provide regular feedback on how stakeholder engagement and participation is shaping and influencing service development and delivery Through engagement and participation processes with commissioned carer support organisations locally, framework support provider organisations, governance groups. ☒ Provide support to enable stakeholder representatives to participate meaningfully and confidently at meetings Through commissioned carer support organisations locally. Through Advocacy Through individual support. Through carer development programmes, such as Recognition to Rights. ☒ Develop participation guidelines to ensure a common understanding and set of expectations for both stakeholders and partnership staff Through the Engagement and Participation Strategy, NLDF, and through co-production with stakeholders. ☒ Support engagement planning and participation in localities, taking account of other engagement activity and local plans across the Community Planning Partnership Through the Engagement and Participation Strategy, NLDF, and through co-production with stakeholders. 7.6 INEQUALITIES & FAIRER SCOTLAND DUTY EQIA Completed & Fairer Scotland Impact Assessment Form Completed and attached to report: EQIA added to website: 8. BACKGROUND PAPERS N/A Yes ☒ No ☐ N/A ☐ Yes / Date added ☐ No ☒ N/A ☐
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12 9. APPENDICES 9.1 North Lanarkshire Carers Strategy 2024-2027 9.2 State of Caring Report (Carers Scotland) published 2023) 9.3 Analysis of Carers (Scotland) Act 2016 funding 2022-2023: responses to Freedom of Information request March 2024 9.4 Lanarkshire Carers Centre update for Committee. 9.5 North Lanarkshire Carers Together update for Committee. 9.6 Action for children Young Carers update for Committee. CHIEF ACCOUNTABLE OFFICER (or Depute) Members seeking further information about any aspect of this report, please contact the following; Maria Williamson, Senior Manager, Quality Assurance, WilliamsonM@northlan.gov.uk
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14 NORTH LANARKSHIRE CARER STRATEGY 2024-2027 Welcome to our Carer Strategy for North Lanarkshire, 2024 to 2027, developed with carer-focused organisations and carers locally. The role of carers in supporting loved ones is immense and without it, the wider impact on Health and Social Care Services would be immeasurable. Key to our progress is the strong working relationship between carers, carer organisations, and University Health and Social Care North Lanarkshire. It is crucial that we continue to build on this firm foundation. Our strategy sets out: 1. Our shared aims - shared across carers, carer organisations, Community and Voluntary Sector and University Health and Social Care North Lanarkshire. 2. Our shared approach - aimed at ensuring that adult carers and young carers across North Lanarkshire can continue to care, so long as they are willing and able, and with the best possible health and wellbeing. 3. Our shared ambition – that policy and strategy not only takes account of caring related need, but that carers shape, influence and inform these, as well as the supports and services that assist, enable, and empower carers. What is University Health and Social Care North Lanarkshire (UHSCNL)? We are a caring and empowering partnership, dedicated to working with our communities to enable people across North Lanarkshire to lead independent, fulfilling, and healthier lives. We have established partnership agreements with a range of organisations. By enhancing and extending our work through these agreements we aim to develop sustainable, innovative, and practical solutions to health and social care challenges that directly benefit our communities and our workforce.
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15 CONTENTS 1. What is the Carer Strategy? 2. Vision and strategic priorities 3. The context for our strategy 4. Who is a carer? 5. What carers told us is important 6. Carers rights 7. Support for carers in North Lanarkshire 8. Our approach 9. Strategic intention overview 10. Specific actions 2024-2027 11. Investment, disinvestment, and reinvestment 12. Reviewing the strategy Appendix 1: Carer organisations in North Lanarkshire Appendix 2: Achievements and Progress 2019-2024
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16 1. WHAT IS THE CARER STRATEGY? The University Health and Social Care North Lanarkshire (UHSCNL) Carer Strategy 2024 -2027 explains our strategic intentions and the actions we intend to take over the next three years to: Improve the lives of carers and young carers. Deliver positive outcomes for carers and cared for people. Ensure carers are involved in individual plans. Ensure carers are involved in influencing and shaping policy and strategy. Why do we need a new Carer Strategy? To continue to respond to the changing needs of carers and young carers. To ensure that strong partnership continues to underpin how we support carers across North Lanarkshire. To fulfil our statutory requirement to update or develop a new Carer strategy every three years. (Our previous Carer Strategy ended in March 2024.) Who is the Carer Strategy For? Carers living in North Lanarkshire. Carers living in North Lanarkshire caring for people elsewhere. Carers who live elsewhere but who care for a person or people living in North Lanarkshire. How did we create the Carer Strategy? Through engagement sessions with carers – facilitated by North Lanarkshire Carers Together, Lanarkshire Carers Centre & Action for Children Young Carers Project – we sought information on areas for improvement. Using information from everyday engagement activity that is embedded within our support of carers across North Lanarkshire.
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17 2. VISION & STRATEGIC PRIORITIES Our shared vision is that: Across North Lanarkshire, Carers and Young Carers, as well as the people being cared for, feel valued, respected, listened to, and well supported. Carers and Young Carers feel as well as possible and have scope to access their interests and a life beyond any caring responsibilities. Our strategic priorities 2024-2027 in support of this vision are: 1. Improve preventative approaches, anticipatory and future planning. 2. Improve communication with carers. 3. Ensure carers know their rights. 4. Promote Income maximisation and social inclusion. 5. Ensure carers can get a break from caring. 6. Continue to ensure carers are at the heart of policy, strategy, and service design. 7. Improve carer experience around hospital discharge. These priorities aim to ensure that all carers are valued, recognised, and supported effectively. Cutting across our priorities are guiding principles of: ‘Getting it right first time’ from the outset, in a timely and efficient manner, to ensure that carers can continue caring for their loved ones without undue burden. Engagement and Participation – Creating meaningful opportunities for carers to shape and influence local plans, policies, strategies, support, and services. Our approach is intended to promote carer inclusion, offer support to get involved in planning and working together, assessing what methods work, effective communication, and evaluating impact. This is to inform and influence decisions on services and support. 3. THE CONTEXT FOR OUR STRATEGY National Carers Strategy The National Carer Strategy, (Scottish Government, December 2022) looks to progress long-term changes to improve the lives of unpaid carers across Scotland. It was created after extensive engagement with carer organisations, carer centres, local government, and unpaid carers themselves. It sets out the action the Government will take across a range of policy areas to ensure its resources for carers are directed to
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18 where they will be most effective. Across Scotland, the intention is that all local authorities and carer-focused organisations will ensure their local strategies fit with this wider strategy. As well as meeting the aspirations of carers locally, our Carer Strategy also needs to align with the aims of the National Carers Strategy and its five pillars, which are: Living with COVID-19 Valuing, Recognising and Supporting Carers Health and Social Care Support Social and Financial Inclusion Young Carers North Lanarkshire priorities Our Carer Strategy must also align with the ambitions of The Plan for North Lanarkshire and Our Health Together, which outlines the long-term vision for our area. Several Ambition Statements within The Plan have a direct connection with our Carer Strategy. These are: Statement 13. Improve preventative approaches including self-management and giving people information and choice over supports and services. Statement 15. Encourage the health and wellbeing of people through a range of social, cultural, and leisure activities. Statement 18. Ensure our digital transformation is responsive to all people’s needs and enables access to the services they need. Statement 19. Improve engagement with communities and develop their capacity to help themselves. Statement 20. Improve the involvement of communities in the decisions, and development of services and supports that affect them. Statement 24. Review and design services around people, communities, and shared resources. Statement 25. Ensure intelligent use of data and information to support fully evidence-based decision making and future planning. Connecting our work to wider initiatives Local Carer strategies must also meet a range of statutory requirements as set out in the Carers (Scotland) Act 2016, and link with other national or local strategies and policies, such as: Condition specific or age-related policies or strategies; Childrens Plan; Self-Directed Support (SDS); Getting It Right for Everyone (GIRFE); and Trauma Informed Practice (TIP).
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19 Our priorities to make our vision a reality Focus of strategic action during plan period National Strategy pillars links Link to Plan for NL 1. Improve preventative approaches, anticipatory planning, and future planning. 2. Improve communication with carers. 3. Ensure carers know their rights. 4. Income maximisation. 5. Ensure carers can get a break from caring. 6. Continue to ensure carers are at the heart of policy, strategy, and service design. 7. Improve carer experience around hospital discharge. These priorities aim to ensure that all carers are valued, recognised, and supported effectively. 1. Improving preventative approaches, anticipatory and future planning (and preventing crisis). 2. Improving communication with carers and their access to information and advice. 3. Ensuring carers know their rights (and that Adult Carer Support Plans and Young Carer Statements are offered and progressed consistently). 4. Supporting carers health and wellbeing (including Living with COVID-19). 5. Ensuring carers get a break from caring. 6. Ensuring carers, and people being cared for, have their income maximised. 7. Improving carer experience around hospital discharge. 8. Improving awareness of and access to Assistive Technology. Additional actions for specific groups of carers 9. Young Carers 10. Parent Carers 11. BAME Carers 12. LGBTQI+ Carers Pillar 2 Pillar 2 / 3 /4 Pillar 2 Pillar 1 / 3 Pillar 3 Pillar 2 / 4 Pillar 1 / 2 Pillar 2 / 3 / 4 Statement 13 / 25 Statement 13 / 19 Statement 13 / 19 Statement 15 / 24 Statement 13 / 15 Statement 15 / 19 Statement 13 / 19 / 20 / 24 Statement 13 / 18 / 24 Cutting across our priorities are guiding principles of: ‘Getting it right first time.’ Engagement and participation Pillar 2 / 3 / 4 Statement 19 / 20 / 24
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20 4. WHO IS A CARER? The Carers (Scotland) Act 2016 defines a carer as an individual who provides or intends to provide care for another individual (the cared-for person). A young carer is a carer who is under 18 years old or is 18 years and still a pupil at a school. An adult carer is a carer who is at least 18 years old but is not a young carer. A carer can be a spouse, partner, parent, sibling, or other family member, or in the case of young carers, be a son, daughter, friend, or any other relation. To be recognised as an adult carer or young carer: You can be any age, gender, culture, race, or religion, can become a carer at any time and might care for more than one person. You might be providing care to a parent, child, sibling, other relative, partner, friend, or neighbour. The person you care for might have a long-term physical condition, learning disability, mental illness, frailty, sensory impairment, or issues with substance misuse. You do not need to live at the same address as the person you care for. You do not need to be claiming Carers Allowance. There is no threshold amount of time if you provide care & you are a carer. You can be in employment or studying and still be a carer. The person you care for does not need to be receiving social care support. We know that many carers, particularly in the early part of their caring journey, may not self-identify as carers. Often, this is because they see themselves primarily as a spouse or family member, for example. Who is not a Carer? The Carers (Scotland) Act 2016 also explains that: Parents of dependent children are not usually considered carers. However, parents of dependent children with additional care and support needs can still be considered carers. Paid care workers and foster carers do not fall within the definition of ‘Carers’ under the Act. Why it is important to identify carers? The early identification of unpaid carers is a key part of our approach. This allows us to: 1. Introduce preventative approaches at the right time. 2. Develop anticipatory approaches and early planning. 3. Support future planning. 4. Minimise the chances of crisis occurring. 5. Target responses and resources appropriately. Local carer strategies must set out plans for identifying carers, such as outreach and awareness raising activity, communication and information dissemination, and events for and about carers.
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21 Carers in North Lanarkshire Not every carer identifies as a carer or is captured within the national Carer Census. This makes it difficult to state with any certainty how many carers we have within our area or the demography around who is caring for who. North Lanarkshire’s population is currently around 341,000 people, and around 13,000 carers in our area are known to carer organisations and/or to University Health and Social Care North Lanarkshire. However, we believe that there may be as many as 50,000 to 60,000 people delivering some form of unpaid care locally at present. This figure would be in keeping with wider research on unpaid caring, which suggests that two out of three people will be a carer at some point in their lives.
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22 5. WHAT CARERS TOLD US IS IMPORTANT THE IMPACT OF CARING Being a carer can often be rewarding and have positive impacts, but it can also result in a range of challenges. During engagement with carers to inform this strategy, the following issues and concerns were highlighted: Impact on health and wellbeing. Carers reported: Poor physical and/or mental health. How the challenges facing NHS services (such as the unavailability of GPs and delays getting to see consultants and specialists) severely impacts their health and cared-for people’s health. Feeling exhausted and experiencing feelings of guilt. Struggling with the expectations of the person they care for who does not want to accept other support; reliance on carers and feeling intense pressure to keep going. Impact on finance. Carers reported: Loss of income. Additional costs associated with caring. Struggling financially affects their health. The need for more financial support to look after their health and wellbeing and greater recognition of the financial impacts of caring. Access to information and advice, particularly around income maximisation, is crucial. Impact on relationships. Carers reported: Social isolation. No scope to “switch off” from caring responsibilities. Valuing opportunities to meet with other carers and accessing peer support. Impact on life balance. Carers reported: Balancing work, relationships, and other caring responsibilities with main caring responsibilities, is challenging. Little scope to have a life outside of caring. Not having any “down time” away from caring. RECOGNITION AND SERVICE RESPONSIVENESS Through engagement, carers shared how they would wish to be recognised and how services and support could be more responsive. Recognition
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23 To be recognised as carers To be supported timeously. To have regular breaks from caring. To be treated with dignity and respect. To be listened to, first time, every time. To be recognised as a parent carer. To be properly involved in hospital discharge planning. Employment and Training The importance of training and support, notably around caring for someone with Dementia, Autism, or other neurological conditions. Future planning Wanting to be involved in shaping policy, strategy and services and recognition that to be able to participate in this may require replacement care. Needing to be properly involved in hospital discharge planning. Worrying about the future. Information, advice, and support. Needing better understanding of what is available to carers from community support options. To have responsive, flexible support when needed. Getting support when it is needed. Consistency when engaging with Social Work; better continuity, and to not feel they must fight for the support they require. Parent carers reported: Feeling that Parent Carers are not listened to in the decisions being made for their children. Concerns surrounding their child not being listened to. Needing to bring in third parties before they are taken seriously. Needing their role as carers recognised within Education. Engagement Sessions with carers from Minority Ethnic communities and LGBTQI+ Carers highlighted commonality with all of the areas noted above but included some specific concerns. For Minority Ethnic carers: Services and support are not always culturally sensitive and can lack understanding of the needs of Minority Ethnic communities. “Minority Ethic” is not one homogenous group and approaches need to be tailored to individual circumstances. Lack of culturally appropriate support for older adults in the community adds
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24 to caring responsibilities. Many Ethnic Minority carers, particularly women, do not feel recognised, understood, and valued within communities and families; the caring role is taken for granted and considered a family duty. Anxiety around COVID continues, with many older adults struggling to participate in activities and gatherings because of this. For LGBTQI+ carers: Recognition that carer needs and those of the person they care for may require a specific approach, or specific support. LGBTQI+ is not a single homogenous group. Greater understanding that approaches are appropriate and unique to individual circumstances. Working Carers Hopes that the new Carers Leave Act, with regulations published and implementation scheduled in April 2024, will have a positive impact on some of the challenges they face.
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25 6. CARERS RIGHTS The Carers (Scotland) Act 2016 outlines the rights of carers in Scotland. It explains the specific duties and powers that each local authority must follow in order to help improve the health and wellbeing of carers, so that they can continue to care, if they so wish, are able and willing to provide care and have a life alongside caring. The key aspects of the Act for Local Authorities, NHS and Health and Social Care Partnerships are: To prepare an Adult Carer Support Plan (ACSP) or Young Carer Statement (YCS) for any carer/young carer who requests one, and to offer one to anyone who appears to be a carer. To provide support to carers based on need which meets our eligibility criteria. To help carers put arrangements in place for the provision of care to the cared-for person in emergencies. To establish and maintain an information and advice service for carers. To consider whether any support should include or take the form of a break from caring. To produce a Short Break Services Statement. To involve carers in the planning of discharge from hospital of the cared-for person To adhere to timescales for the preparation of ACSPs/YCSs for carers of people who are terminally ill. To prepare a local carers strategy. Our strategy sets out how we are responding to these requirements and how we will continue to support carers through a range of services and supports. Adult Carers Support Plan (ACSP) We will offer an Adult Carer Support Plan (ACSP) to any adult we identify as a carer or any adult who requests one, in line with the statutory duty to do so. The ACSP provides a framework for identification of adult carers’ individual needs and any supports required to help achieve personal outcomes. In North Lanarkshire, the responsibility to offer an ACSP sits with Lanarkshire Carers Centre and Social Work. Health staff also have a responsibility to offer an ACSP to all carers they encounter. Young Carers Statement (YCS) Young carers identified by support agencies or who self-identify as Young Carers are offered a Young Carer Statement through North Lanarkshire Young Carers which is the delegated support provider responsible for completion and review of YCSs. Each YCS identifies the caring role carried out and whether this role is manageable, safe, appropriate, and what additional support is required. Eligibility Criteria We have prepared our eligibility criteria for carers using guidance issued by the Scottish Government. This is based on the impact that caring has on the following aspects of the carer’s life: Health and wellbeing Relationships Living environment Employment and training
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26 Finances Life balance In North Lanarkshire eligibility is based on Adult Carer Support Plans and Young Carer Statements and the identified level of need. We are increasingly moving towards a “what would help” approach as opposed to “eligibility.” Waiving of charges Support and/or services to meet caring related needs identified within an Adult Carer Support Plan cannot be charged for. Any charges must be waived. Hospital Discharge NHS Lanarkshire has made a commitment to involve carers in the discharge planning of the person they care for, in line with this requirement as stipulated in the Carers (Scotland) ACT 2016. Work is ongoing in partnership with local carer organisations to provide an information service and direct support for carers throughout the hospital discharge process. Breaks from caring The Scottish Government has intimated an intention to pass legislation ensuring that carers will have a legal right to a break from caring. The UK Government has progressed a Bill enabling carers in paid employment to have five days unpaid annual leave from caring. Our approach to breaks from caring is set out within our Short Breaks Services Statement, which complements this strategy. Situation Suggested Response Cared for person can cope independently enough that the Carer can take a break without the need for support from services or that a family break without the need for any additional support is possible Self-help (no service responses are required around Carer breaks) Also consider whether preventative or anticipatory planning is required? Is a Future Plan in place? Cared for person requires support so that the Carer can have a break. Wider family and friends can assist with this or a family break without the need for any further support is possible Self -help (no service responses are required around Carer breaks) Also consider whether preventative or anticipatory planning is required? Is a Future Plan in place? For the scenarios above, it is suggested that the Carer identifies that they can self -manage breaks without support or service input, in line with the principles of independence, self-reliance and self-help. This approach should also mean that resources can be targeted towards those Carers with greater levels of need as suggested in the scenarios below. At present, this is an outline approach only. Each situation will be unique. There may be different options or ways of approaching this area. The Carer Strategy cannot be prescriptive and simply reflects that bespoke solutions, according to the individual circumstance of the Carer and cared for person should be the default
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27 position. Engagement and Participation with Carers and local Carer Organisations will continue to help inform this. Cared for person may need to summon assistance if the Carer is not present and there is no family or friends support available. Person’s own technology (mobile phone, Portal, Facetime and so on) or services responses such as Community Alarm Service or other Assistive technology options (for example remote support) Cared for person requires in person support and Carer requires breaks, and there is no wider support from family or friends available Carer Breather (North Lanarkshire Carers Together) A test of change Carer Sitter demonstration project is also being planned for later in 2024 – 2025 and this may offer further options, should the demonstration project prove successful. Cared for person requires in person support and Carer requires breaks and there is no support from family or friends available Flexible short break fund (Lanarkshire Carers) Carer Breaks (Lanarkshire Carers) Young Carer Breaks (Young Carers Support Project) Cared for person requires in person support and Carer requires breaks. Support Services in place – Integrated Day Service, Locality Support Service, agreed respite and so on Cared for person requires in person support and Carer requires breaks. Carer Budget following an Adult Carer Support Plan being progressed and identifying unmet need. Carer Budgets can be across Low, Moderate, Significant or Critical Carer need, dependent on individual circumstance. Cared for person may be in receipt of an Individual Budget
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28 7: SUPPORT FOR CARERS IN NORTH LANARKSHIRE University Health and Social Care North Lanarkshire As highlighted on Page 1, we are a caring and empowering partnership, dedicated to working with our communities to enable people across North Lanarkshire to lead independent, fulfilling, and healthier lives. The Scottish Government has set out nine national health and wellbeing outcomes that we, along with every other health and social care partnership in Scotland, is working towards. Commissioned Carer Organisations University Health and Social Care North Lanarkshire currently commissions three carer organisations to ensure that carers and young carers are supported, that there is the provision of an information, advice and signposting service and that carer interests are represented. These organisations are: Lanarkshire Carers Centre North Lanarkshire Carers Together Action For Children Young Carers Project All three of these organisations have carer representation on their management board or committee and feed into the Carer Support Network and North Lanarkshire’s Integrated Joint Board. This helps ensure that carer voices are heard, and can influence and shape policy, strategy, and service development. Lanarkshire Carers Centre www.lanarkshirecarers.org.uk Lanarkshire Carers provides information, advice and a range of direct support and services which can help carers maintain or improve their quality of life and continue to care. Its services are open to all carers aged 18 years and older living in Lanarkshire. Its Short Breaks Bureau helps carers to take breaks from caring, while its Carer Training Programme can help carers to manage the caring role, understand specific conditions, and look after their own health and wellbeing. North Lanarkshire Carers Together www.carerstogether.org North Lanarkshire Carers Together provides a range of information, advice, and signposting services. Its Carer Breather helps carers to access regular short breaks from caring. A dedicated Equalities post focuses on ensuring that under-represented groups or communities have a voice. Its carer advocacy work helps carers to access advocacy support (distinct from any advocacy provision for supported people). Action For Children North Lanarkshire Young Carers www.actionforchildren.org Action For Children North Lanarkshire Young Carers raises awareness, identifies, and provides direct support to children and young people who look after or help to look after someone in their family who is unwell or disabled, including children caring for parents who have mental health or substance misuse problems.
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29 OTHER GROUPS OR ORGANISATIONS PROVIDING SUPPORT TO CARERS There is a range of Community and Voluntary Sector organisations which provide a range of support, including condition-specific and age-related support to carers, whether directly or indirectly. These organisations form part of the Carer Support Network. The list of organisations includes, but is not limited to: PAMIS Family Support PAMIS | Promoting a more inclusive society Provides support to families caring for someone with profound and multiple disabilities. HOPE for Autism Hope for Autism – Providing support across Lanarkshire Provides support to people with Autism as well as to family members and carers. Deafblind Scotland www.dbscotland.org.uk Provides sign guide interpreters for people with dual sensory impairment, as well as support to family members and carers. Alzheimer’s Scotland We are Scotland's dementia charity (alzscot.org) Provides a post diagnostic support service and support to family members and carers. North Lanarkshire Disability Forum (NLDF) www.nldforum.org.uk The lead agency locally facilitating the Engagement and Participation of supported people (including carers). Voluntary Action North Lanarkshire (VANL) www.voluntaryactionnorthlanarkshire.org The lead agency for the Community Solutions programme, whereby people, including carers and cared for people can be supported by a diverse range of community or voluntary sector organisations. Getting Better Together (GBT) www.shottshealthyliving.com Offers a post hospital discharge support service, and wider carer support options to support family members and carers. Playpeace www.playpeace.org.uk Offers parental peer support and activities for children with additional support needs.
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30 OTHER SUPPORTS FOR CARERS Making Life Easier (MLE) This is an online service for people experiencing difficulties with everyday activities, including carers. It offers information, advice and direct access to services and support, and can assist people with equipment solutions, many of which can be ordered online direct from its equipment service. Assistive Technology A range of specialist equipment technology can support carers by helping the person they care for live at home independently or alert the carer if help is needed. The range of technology available from Health and Social Care includes falls sensors, bed monitors, fire safety sensors and GPS locators. Care Opinion Offers supported people and carers an online platform with which to provide anonymised feedback on their experiences of care and support.
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31 8. OUR APPROACH Our approach is based on the principles of promoting independence, self-help, enablement, and empowerment for carers in the community. We aim to support carers to maintain their autonomy and decision-making capabilities, enabling them to care for their loved ones while also prioritising their own well-being. By providing resources, information, and guidance, we seek to empower carers to access the support they need and navigate the caring journey with confidence. We recognise the strength and resilience of carers and encourage self-care practices that enhance physical, emotional, and mental well-being. Through this and peer support networks, carers can learn from each other, share experiences, and build a sense of camaraderie. We are committed to enabling carers to fulfil their caring responsibilities effectively and efficiently. By offering training, skill development opportunities, and practical assistance, to augment carers’ existing experience and expertise, carers are equipped with the tools and knowledge they need to navigate complex care situations and engage with health and social care services with confidence. At the core of our approach is the empowerment of carers to advocate for themselves and their loved ones, and to actively participate in decision-making processes that affect their lives. We strive to create a supportive environment where carers are respected, valued, and empowered to voice their needs, concerns, and aspirations, leading to positive outcomes for both them and the individuals they care for. Engagement and Participation of carers Engagement and participation underpin our approach and all of our strategic priorities and actions. We aspire to improve the ways we consult with, and involve, carers on matters which affect them. We have identified five levels where outcomes need to be considered across the engagement and participation activity that takes place. These are: 1. Individual Level - Where carers and people being cared for can use lived experience, self-appraisal, and engagement through options such as feedback, surveys, and focus groups, to self-identify where support for them as an individual carer and/or to the cared for person is needed, how it is provided and in what way provision is making a positive difference. 2. Carer Support Service and/or Project Level - Where carer organisations can use engagement processes such as carer feedback, case studies, performance
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32 management and performance reporting information to discern and measure the impact and efficacy of carer support approaches. 3. Organisational Level - The organisational aim of University Health and Social Care North Lanarkshire is that people remain as independent as possible, for as long as possible, are more socially included/connected and appropriately supported where necessary. The One Plan for North Lanarkshire through several of its Ambition Statements, Local Outcome Improvement Plans, and Carer strategies, as well as the Self-Directed Support (Scotland) Act and Carers (Scotland) Act, all set out desired organisational outcomes that we work to. 4. Partnership Level - This is a shared outcome working towards people being able to maintain independent living for longer. Carers play a key role in this, in terms of supporting people at home, in their local community and in ensuring that those they care for remain as independent as possible. Carers can also lead on or inform preventative approaches and anticipatory planning. 5. National Level - Each Integration Authority, including University Health and Social Care North Lanarkshire is required to publish an annual performance report which sets out how the national health and wellbeing outcomes are being improved.
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33 9: STRATEGIC INTENTION OVERVIEW The focus of our strategic actions across the three years of the Carers Strategy 2024 -2027 are as follows and detail of how we will progress these are provided in the next section ‘Specific Actions’. These priority area actions will help to ensure that all carers are valued, recognised, and supported effectively. 1. Improving preventative approaches, anticipatory and future planning (and preventing crisis). 2. Improving communication with carers and their access to information and advice. 3. Ensuring carers know their rights. 4. Supporting carers health and wellbeing 5. Ensuring carers get a break from caring. 6. Ensuring carers, and people being cared for, have their income maximised. 7. Improving carer experience around hospital discharge. 8. Improving awareness of and access to Assistive Technology. 9. Influencing and shaping policy and strategy. Additional actions for specific groups of carers: 10. Young carers 11. Parent carers 12. BAME carers 13. LGBTQI+ carers All these actions will be tackled through a shared approach across University Health and Social Care North Lanarkshire and carer organisations.
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34 10: SPECIFIC ACTIONS 1. IMPROVING PREVENTATIVE, ANTICIPATORY AND EMERGENCY PLANNING Why this is a priority: Preventative, Anticipatory and Emergency Planning is about taking a person-centred, thinking ahead approach. It gives carers opportunities to consider their options and ‘plan for the future.’ Improving this area is about ensuring that the right conversations take place with health and social care professionals and that carer preferences are explored and responded to. It is also about trying to prevent carers from having to repeat conversations with different organisations about their circumstances. To be effective in this area we also need to identify carers before they present at a point of crisis. We estimate that only around one in four carers is currently known to services in North Lanarkshire. Specific actions: 1. Support the development of a comprehensive system to proactively identify and assess carers, including regular screenings, assessments, and follow-ups to ensure all carers’ needs are captured effectively. 2. Build in a bespoke offer for training sessions, workshops, and resources to empower carers in developing and implementing their Preventative, Anticipatory, and Emergency Plans. This can include practical information and tools tailored to the specific needs of carers and ensuring that carers are aware of the local arrangements regarding Adult Carer Support Plans and Young Carer Statements. 3. Continue with our collaborative approach to provide guidance and support in creating these plans, ensuring they align with the care needs of the cared-for individual and are regularly reviewed and updated, as necessary. 4. Utilise technology and digital platforms, and explore innovative ways to utilise technology, such as mobile apps or online platforms, to facilitate the development and sharing of Preventative, Anticipatory, and Emergency Plans among carers and care professionals. This can improve accessibility and communication, making the planning process more efficient and effective. What success will look like. More carers will have Preventative, Anticipatory and Emergency Plans in place through reviews, adequate information on supports and services, identification, and assessment, which can help in better preparation for any unexpected situations and improve overall well-being and quality of care provided.
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35 There will be a reduction in the numbers of carers coming into crisis. An increasing number of carers, and cared for people, will be aware of, and using, assistive technology (digital solutions) as an integral part of caring and support arrangements. 2. IMPROVING COMMUNICATION WITH CARERS AND THEIR ACCESS TO INFORMATION AND SUPPORT Why this is a priority: Effective communication is essential in ensuring carers receive high-quality support that is tailored to their unique needs. Access to the right information, at the right time and in the right place, is crucial. Specific actions: 1. University Health and Social Care North Lanarkshire will continue to commission carer organisations to provide information and support: 2. In addition to commissioned services, University Health and Social Care North Lanarkshire has invested in PAMIS, HOPE for Autism, Alzheimer’s Scotland, and North Lanarkshire Disability Forum to provide condition specific information and support to carers. What success will look like. Carers will be able to access the right information and advice for their particular situation at the right time and place. 3. ENSURING CARERS KNOW THEIR RIGHTS Why this is a priority: Carer rights and entitlements matter to carers, not just because this helps them to feel valued and recognised for what they do, but because it is a key factor in ensuring carers receive the support they need. Understanding rights also raises awareness of choices around caring. Specific actions: 1. Continuing to inform carers of their right to an Adult Carer Support Plan or Young Carer Statement.
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36 2. Expand the range of resources, such as informational leaflets, online resources for staff and people, share workshops and training, that specifically outline carers' rights, entitlements, and available support services. 3. Continue to support dedicated carer advocacy to assist carers in navigating their rights and entitlements, advocating on their behalf when needed, and supporting carers in accessing relevant support services. This can include providing individualised guidance on how to assert rights effectively. 4. Continue to support celebratory platforms for carers to connect with each other, share experiences, and support one another in understanding and exercising their rights. 5. Build on existing partnerships with community organisations, and advocacy groups to enhance carers' knowledge and awareness of their rights. What success will look like. Carers understand what they are entitled to. Carers are enabled to manage their caring role and are able and willing to continue with their caring role. Carers feel valued and respected by services, and are listened to, understood, and involved in individual planning, support, and services with the person that they care for as well as for themselves. 4. SUPPORTING CARERS HEALTH AND WELLBEING (including Living with COVID) Why this is a priority: Supporting carers’ health and wellbeing is a key focus for statutory services, commissioned services, and others, as it is essential to the ability to continue to provide care. It is important to both carers and to the people they care for. The strain of caring can impact each carer differently; recognising that every carer has unique and specific needs with regard to maintaining their health and wellbeing is important. Many carers continue to live with the impact of COVID and require support to rebuild confidence and to feel safe to re-engage with wider communities and services. Specific actions: 1. Increase awareness and encourage engagement of carers who are not currently affiliated with carer organisations in North Lanarkshire. 2. Greater visibility of resources, accurate signposting, information, and advice, regardless of the carer’s entry point to carer support.
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37 3. Continuing to support the provision of carer health checks and counselling/wellbeing services, on demand wellbeing library and health focused carer training. 4. Continuing to meet carers, and carer organisations, regularly to hear current concerns regarding COVID and provide up-to-date information. 5. Supporting carers to rebuild confidence and feel safe to re-engage with wider communities and services. 6. Ensuring that any carers who require PPE, continue to have access to it. What success will look like. Carers feel healthy and well enough to manage their caring role, have support as needed and can access opportunities alongside or out with caring. Carers are able and willing to continue with their caring role. Carers feel confident and supported to protect themselves from COVID, to re- engage with their communities, and to are supported to recover from the negative impacts of COVID. 5. ENSURING CARERS GET A BREAK FROM CARING Why this is a priority: Many carers may struggle to maintain their health and wellbeing without access to regular and substantial breaks from their caring responsibilities. Breaks from caring are important for sustaining caring relationships and ensuring that carers have time for themselves and their interests. Specific actions: Our approach to breaks from caring is set out within our Short Breaks Services Statement, which complements this strategy. 1. Continue to support and develop individual choice and control regarding breaks, for both carer and cared for person. 2. Build responsiveness to ‘here and now’ situations which can arise at extremely short notice. 3. Carers will have someone to talk to through being connected to services and support. What success will look like.
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38 Carers will be able to have breaks from caring, whether through natural supports, short break options or through individual budgets, where appropriate. Individual carers conversations lead to personalised break from caring. Widening the understanding of what a carer break can look like: ‘regular time for me,’ ‘small pockets of respite.’ 6. ENSURING CARERS, AND PEOPLE BEING CARED FOR, HAVE THEIR INCOME MAXIMISED Why this is a priority: For most carers there is a monetary impact to caring. Income maximisation enables and empowers carers to self-fund costs, such as travel and activities, and to meet additional or ‘hidden’ costs associated with caring, such as increased utility bills or food costs. Specific actions: 1. Embedding income maximisation as part of every new Community Care Assessment and making it a consistent approach. 2. Every Adult Carer Support Plan, or Young Carer Statement to consider what financial help and support may be available. 3. Delivering awareness raising and training to UHSCNL staff and wider staff teams to ensure that carers and people being cared for have their income maximised. 4. Carer organisations continue to offer a wide range of other financial and non-financial supports to help alleviate hardship, as well as information, money advice and signposting. What success will look like. Carers will be aware of the range of the financial support or assistance available to them. All carers locally will be aware that support put in place to meet caring related needs as identified in an Adult Carer Support Pan, cannot be charged for. Carers will experience better financial inclusion and less hardship. Through income maximisation, carers can enjoy greater social inclusion.
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39 7. IMPROVING CARER EXPERIENCE AROUND HOSPITAL DISCHARGE Why this is a priority: Often a hospital admission can mark the beginning of a changing, increased, or new caring role. The right information, advice, and support can help to reduce the pressure and anxiety often faced by carers when this occurs, and lead to more successful and positive discharges from hospital. Specific actions: 1. Better and earlier discharge planning that includes carers. 2. Increased partnership working from all organisations involved in discharge. 3. Increased capacity for organisations that actively support carers at discharge and in the community. 4. A reduction in instances of carers being informed of discharge at short notice. 5. Evaluation of carer hospital discharge payment scheme 6. Implementation of discharge passport. 7. Increased feedback and engagement from carers to inform discharge improvements. 8. Continued support of hospital linked carer support workstream and its carer support staff linked to the three acute hospital sites in Lanarkshire. What success will look like. Carers and cared for receive the right support at the right time. Reduction in complaints.
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40 8. IMPROVING AWARENESS OF AND ACCESS TO ASSISTIVE TECHNOLOGY Why this is a priority: Technology solutions enable and empower people to be as independent as possible, for as long as possible, as well as reducing risk. For example, assistive technology could support a carer to safely leave the cared for person for periods of time, secure in the knowledge that support could be summonsed, if required. Creating greater independence can help to reduce levels of stress and strain on carers and assistive technology can play a key role in improving carers’ health and wellbeing. Specific actions: 1. Continue to help carers and cared for people to use their own technology in ways that can support their independence and individual needs. 2. Continue to promote the support and services provided by University Health and Social Care North Lanarkshire’s Assistive Technology Team, for example through attendance at carer events and providing promotional material or merchandise. 3. Continue to promote the ‘think technology first’ message with partner agencies and stakeholders. 4. Reduce barriers to accessing assistive technology support. What success will look like. Carers and cared for people will be aware of the range of technology options aimed at supporting independence and/or minimising risk. A significant increase in the number of people using technology as part of their support arrangements. Carers will be able to access Assistive Technology, following an ACSP or assessment when required. Carer services, carers and cared for people will be able to request this directly. Wait times for equipment will be reduced, so reducing the number of delayed discharges.
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41 9. YOUNG CARERS Why additional specific actions are required for this group: For young carers, the experience of providing care can be stressful and isolating. For many it can negatively impact their experience in education. It is particularly important to support young carers so they can still enjoy being young, have a better chance of succeeding in all parts of their lives, and be able to pursue their dreams outside of caring. Specific actions: 1. Continue to work within schools to improve the identification of young carers and ensure that they are aware of their entitlement to a Young Carer Statement. 2. Continue to review the support for young carers regarding the different routes to further and higher education and employment. 3. Continue to develop transitional support, building on the existing links with New College Lanarkshire, Skills Development Scotland, and Community Jobs Scotland. 4. Improve support of young carers with hospital discharge. (Young carers tend to be unseen regarding the discharge of cared for individuals.) 5. Through increased partnership working, innovative thinking and development, implement ways to better reach young carers from ethnic minorities. 6. Continue to deliver awareness training to UHSCNL staff, to improve recognition and support of young carers. 7. Continue to provide a range of supports, including group work programmes, one to one supports, short breaks, and in-school support, and respond in a flexible way to the issues that young carers identify. 8. Continue to ensure that the views of young carers are built into the planning and shaping of support and services and ensure links with the North Lanarkshire Engagement and Participation Strategy. What success will look like. As far as possible, young carers will enjoy a childhood like other young people and children. Young carers will be well supported, able to understand and cope with their caring responsibilities and have access to the right support, at the right time and place, should circumstances change. Positive destinations become more achievable through educational support.
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42 10. PARENT CARERS Why additional specific actions are required for this group: Parent carers have to balance the role of a parent with meeting their child’s needs as a carer. They are less likely to see themselves as a carer because looking after their child is something they would naturally do, regardless of the circumstances. Making the distinction between being a parent or a parent carer is important, so that there is recognition of any need for additional support. Specific actions: 1. Implement a dedicated support framework that recognises and addresses the unique challenges and needs of parent carers. This framework should provide targeted information, resources, and services that cater to the dual role of being a parent and a carer. 2. Coordinate with carer organisations awareness campaigns and training sessions to educate UHSCNL staff, as well as parent carers themselves, about the distinction between being a parent and a parent carer. The emphasis should be on the importance of identifying parent carers and ensuring that parent carers are aware of additional support options. 3. Support the parent carer working group comprised of parent carers to provide insights, feedback, and recommendations on how best to support this specific group. Collaborate with parent carers in decision-making processes and support involvement in the development and evaluation of support initiatives. 4. Regularly review and assess the impact of support initiatives for parent carers, including the outcomes of the established working group. Ensure that any changes in circumstance, learning and recommendations can feed into the Carer Strategy to keep it “current,” as well as to continuously improve and tailor support for parent carers. What success will look like. Parent carers feel valued and respected by services. Parent carers are identified as carers, should that be their choice, have a voice, are listened to, understood, and involved in individual planning, support, and services with the person that they care for as well as for themselves.
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43 11. MINORITY ETHNIC CARERS Why additional specific actions are required for this group: Carers from ethnic minorities can experience additional barriers and challenges. Many carers from minority ethnic backgrounds do not recognise themselves as carers due to cultural expectations; the term “carer” does not exist in some cultures. People in these circumstances are also more likely to report negative experiences of trying to access help and support. Minority ethnic does not describe a single homogenous group, and person or situation specific support should be tailored to individual needs. Specific actions: 1. Working with partners to identify, engage, and support carers from Minority Ethnic communities. 2. Awareness raising and training for UHSCNL staff, wider staff teams and consideration of awareness raising through corporate communications. 3. Seek input from carers from Minority Ethnic communities regarding the barriers faced and the support required to overcome these. 4. Greater recognition of cultural differences and their implications. 5. Support tailored to individual needs. What success will look like. Carers from Minority Ethnic communities will be able to access the range of carer support options available to other carers, with reasonable adjustment to reflect any specific needs. This could include, and is not limited to, translation services, interpreters, recognition of English as a second language, culturally sensitive support, and other considerations identified as barriers by carers from Minority Ethnic communities.
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44 12. LGBTQI+ CARERS Why additional specific actions are required for this group: LGBTQI+ carers face unique challenges, both practical and emotional, in their caring role. They may experience additional stress and strain because of worries about others’ reactions, or even discrimination, when seeking support and accessing services. LGBTQI+ carers can experience increased isolation, as well as losing aspects of their LGBTQI+ identity as a result of the demands of their caring role. Specific actions: 1. Training programmes for healthcare professionals, social workers, and service providers to increase awareness of equality issues in relation to caring and enhance their cultural competence in addressing the needs of LGBTQI+ carers. 2. Increasing visibility of LGBTQI+ carers in awareness campaigns and information materials regarding caring. 3. Expanding support services to reach diverse LGBTQI+ communities, considering factors such as age, ethnicity, and gender identity. 4. Implementing strategies to address and reduce stigma and discrimination faced by LGBTQI+ carers. 5. Promoting collaboration between LGBTQI+ organisations, carer support groups, and health and social care to create a comprehensive and integrated support network. What success will look like. Increased awareness and understanding of the unique challenges faced by LGBTQI+ carers among healthcare professionals, service providers, and the broader community. Better availability of accessible and inclusive support services tailored to the specific needs of LGBTQI+ carers. Improved mental health outcomes for LGBTQI+ carers, including reduced stress and increased well-being. An empowered and engaged LGBTQI+ carer community that actively participates in decision-making processes. Positive changes in policies and legal frameworks that protect the rights and well- being of LGBTQI+ carers.
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45 10. INVESTMENT, DISINVESTMENT AND REINVESTMENT Given the widespread cost of living crisis and the financial pressures across Health and Social Care, the approaches described above may also require elements of disinvestment, to free up resources for reinvestment. In the lead up to the Carer Strategy 2024 -2027 there has been further investment in: PAMIS: Family Support Service (expanded service commencing April 2024) North Lanarkshire Carers Together: Equalities post North Lanarkshire Carers Together: Carer Breather Lanarkshire Carers Centre: Carer Outcomes Grant and Flexible Support Fund Lanarkshire Carers Centre: CarerSpace Hospital Discharge Carer Support Scheme Alzheimer’s Scotland: Post Diagnostic Support Service (Dementia) Autism related support through the Autism Network HOPE for Autism: extended contract. Investment in carer support around both Dementia and Autism is a direct consequence of these being identified in both the 2021 and 2023 Carer Census as being amongst the highest caring related conditions. A third priority caring area is around Frailty. North Lanarkshire is a pathfinder area in a national programme; Getting it Right for Everybody (GIRFE), with findings from this work, directly influenced by people with lived experience, expected to help influence and shape our future approaches.
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46 11. REVIEWING THE CARER STRATEGY Our Carers Strategy has an outcome focused approach. We need to ensure that in setting out a 3-year approach to supporting carers and cared for people, that our strategy can still be flexible enough to respond to changing circumstances without going off-course due to such changes. We need flexibility that is informed by two interconnected strands: 1. Professional expertise and knowledge, analysis, data, and research. 2. Carer experience, community knowledge, and the involvement of both carers and people being cared for. Both strands must be used to achieve impact, then assess that impact - the difference that we make; and also help us understand where that impact came from. Both approaches must also reflect the diversity of voices, backgrounds, and perspectives. Progress will be reviewed through: The governance structure and processes of the Integrated Joint Board. The Carers Oversight Group, which has a key role in monitoring impact. Introducing a carer led group to support the work of the Carers Oversight Group The Strategy should also be formally reviewed at the midway point. All stakeholders, including individual carers, and cared for people, carer organisations, and wider organisations with a direct, or indirect role in supporting carers, can have a say in determining how things are working for them.
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47 | P a g e APPENDIX 1: Supporting carers in North Lanarkshire Commissioned Carer Organisations University Health and Social Care North Lanarkshire currently commissions three carer organisations Lanarkshire Carers Centre North Lanarkshire Carers Together Action For Children Young Carers Project to ensure that carers and young carers are supported, that there is the provision of an information, advice and signposting service and that carer interests are represented. Lanarkshire Carers Centre www.lanarkshirecarers.org.uk Lanarkshire Carers Centre provide information, advice and a range of direct support options and services which can help carers maintain or improve their quality of life and to continue to care. Services are open to all carers aged 18 years and older living in Lanarkshire. Delivers practical and emotional support to individuals and groups, building trusted relationships with carers that help them to identify and address their support needs and make sure they know their rights. Offers outreach and locality support and works in partnership with a range of organisations and services that also help carers. Carer Support Workers are co-located in social work localities and health settings and the staff team works from Lanarkshire Carers Centre in Airdrie and also Hamilton. Support is also provided to carers from Minority Ethnic communities, Young Adult Carers aged 18–25 years old and other groups of carers who are under-represented. Its Short Breaks Bureau provides a range of information and support for carers to take a short break from caring, including identifying short break opportunities that meet their needs and circumstances, direct carer grant funding which may assist carers to take a short break from caring or access other things that can help reduce isolation and exclusion, information and guidance with arranging a short break and other useful resources for carers. Accesses funding and other initiatives to support carers in financial hardship due to having a reduced or limited income, particularly with rising cost-of-living pressures. [Lanarkshire Carers Centre is the local delivery partner through Shared Care Scotland for funding provided by the Scottish Government.]
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48 | P a g e Works with an independent partner to provide carers access to counselling sessions and wellbeing support. An extensive Carer Training Programme provides in-person, online and some hybrid options to suit carers circumstances, which enables carers to meet, share experiences, develop connections/friendships and access self-managed peer support, often out with the particular carer training activity. North Lanarkshire Carers Together www.carerstogether.org North Lanarkshire Carers Together provide a range of carer information, advice, signposting services as well as a campaigning remit. Carer Breather is an innovative approach to ensure that carers can access regular short breaks from caring. A dedicated Equalities post aims at ensuring that under-represented groups or communities have “a voice.” A Carer Advocacy worker ensures that carers can access advocacy support that is distinct from any advocacy provision for supported people. A Recognition to Rights Development Programme for carers equips participants with knowledge, skills, and tools to help shape and influence policy and strategy related to caring. Action For Children North Lanarkshire Young Carers Project www.actionforchildren.org Action For Children North Lanarkshire Young Carers Project offer a support service, including short breaks for young carers across North Lanarkshire. Carers Oversight Group University Health and Social Care North Lanarkshire facilitates a group meeting with the three commissioned carer organisations to discuss and agree approaches to supporting carers, whether through direct carer support carer information, advice and signposting services, and carer advocacy. Carer Support Network
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49 | P a g e Comprises a broader range of carer organisations and other organisations involved in the provision of direct carer support or indirect carer support, ensuring that the carer ‘voice’ is represented and that any planning/actions taken are in line with identified carer outcomes. Integrated Joint Board (IJB) Carer representation is a key facet of the Integrated Joint Board. Carer Support Groups All three commissioned carer organisations host a range of carer groups and act as a conduit to ensure that caring related issues can be fed into the Carer Oversight Group, Carer Support Network or to University Health and Social Care North Lanarkshire. A wide range of other groups or organisations also support or work on behalf of carers providing a range of condition specific or age-related support to Carers, whether directly, or indirectly. These organisations form part of the Carer Support Network. The list of organisations includes, but is not limited to: PAMIS Family Support www.pamis.org.uk Provides support to families caring for someone with profound and multiple disabilities. HOPE for Autism www.hopeforautism.org.uk Provides support to people with Autism as well as to family members and carers. Parkinson’s self-help Group provides support to people with Parkinson’s Disease and associated Neurological conditions, as well as an information/outreach service to family members and carers. This is augmented by The Autism Network, which provides bespoke additional Autism- specific input. Deafblind Scotland www.dbscotland.org.uk Serves the Deafblind community, sustaining deafblind people’s personal and professional support networks and influencing statutory services and policy. Raises awareness of deaf blindness, and highlights the everyday challenges faced by deafblind people. Also provides sign guide interpreters for people with dual sensory impairment, as well as support to family members and carers. Alzheimer’s Scotland www.alzscot.org Alzheimer’s Scotland provide a post diagnostic support service and also support family members and Carers.
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50 | P a g e North Lanarkshire Disability Forum (NLDF) www.nldforum.org.uk North Lanarkshire Disability Forum is the lead agency for the Engagement and Participation of supported people (including carers). It holds a fund that curated organisations (those organisations with particular skill, knowledge, experience, or expertise) can access to facilitate engagement and participation from specific sectors of the community. Voluntary Action North Lanarkshire (VANL) www.voluntaryactionnnorthlanarkshire.org Interfaces with third sector organisations locally and acts as the lead agency for the Community Solutions programme, whereby people, including carers and cared for people can be supported by a diverse range of community or voluntary sector organisations. VANL also support the Carer Breather programme, facilitated by North Lanarkshire Carers Together, where carers can access regular breaks from caring. Getting Better Together (GBT) www.shottshealthyliving.com GBT offer a post hospital discharge support service, and wider carer support options to support family members and Carers. Playpeace www.playpeace.org.uk Offers parental peer support and activities for children with additional support needs. All of these organisations have carer representation on their management board or committee and act as a conduit to feed into the Carer Support Network and Integrated Joint Board. This helps ensure that carers voices are not only heard, but influence and shape policy, strategy, and service development.
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51 | P a g e APPENDIX 2: Achievements and Progress 2019 - 2024 Introducing a new strategy is an opportunity to look forward, but we were also keen to capture the range of successes and progress over the past five years and reflect on this too. Since 2019, our partnership of UHSCNL, Lanarkshire Carers, NLCT and Action for Children - Young Carers, as well as a wide range of Community and Voluntary Sector organisations, and most importantly, carers, has made considerable progress. The 2024 -2027 strategy builds on this progress. Collectively, we have made significant progress regarding carer information, advice, and communication. Carers have reported that they feel recognised, supported individually, and are more involved in wider policy and strategy development. We intend to build on this progress over the next 3 years. A considerable number of ACSPs and YCPs have been progressed resulting in a range of good outcomes for carers. We do, however, recognise that this has not been a consistent experience for every carer. This is why this is remains a key focus within our new strategy. Support for young carers has been embedded in all secondary schools across NL for the past 20 years - ensuring that young carers are aware of how to access support. This will continue to be a focus in the new strategy. Our partnership has ensured that carers are aware of all four Self-Directed Support options. We are also aware that this has not been everyone’s consistent experience. We want to tackle this inconsistency, hence our enhanced focus in the new strategy and links to the SDS Transformation agenda. We have had success in promoting and supporting carer identification. However, as can be seen from the strategy, more work is needed to improve in this area. Identification of carers at the earliest possible stage helps us all. Support can be introduced at an early stage, assistive technology can be considered, and it is always easier to plan interventions when things are settled than it would be in time of crisis. The uptake of assistive technology has increased significantly. We are keen to build on this to help minimise risk and maximise independence for carers. We have an expanded Assistive Technology team to support this, and the team has already provided very helpful and informative input at locality events, carer organisation AGM’s as but two examples. Disability Information Officers have been in post for some time. They provide support, advice and signposting to local support groups, charitable organisations and University Health and Social Care services. They also assist with MLE assessments and recommendations including equipment.
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52 | P a g e Lanarkshire Carers, North Lanarkshire Carers Together, and Action for Children Young Carers Project have provided an invaluable range of information, advice, signposting, and support to carers. Carers have reported that the range of support on offer has proven invaluable to them in their caring role. These supports are too numerous to mention but further details are available on each of the organisation’s websites found in this strategy. University Health and Social Care North Lanarkshire would like to express our thanks to all three organisations, individual carers and staff across both the statutory and voluntary sectors who have all made such a positive contribution to carer support in North Lanarkshire over the last 4 years. We trust that our combined efforts over the next 3 years will further develop and enhance carer support and positive outcomes across North Lanarkshire. Alternative language options This document can be made available in a range of languages. If you require a copy in an alternative language please contact us at: To make a request, please contact Corporate Communications on 01698 302527 or email: corporatecommunications@northlan.gov.uk
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53 | P a g e Appendix 2 State of Caring 2023 A health and social care crisis for unpaid carers in Scotland
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54 | P a g e ‘I just do not have time to look after myself’ About this research This report, produced by Carers Scotland, explores the key findings from the State of Caring Scotland survey 2023 on the health of carers and the support they receive from local authorities, health and social care partnerships and the NHS. Carers Scotland’s annual State of Caring survey has been undertaken for over a decade and is Scotland’s most comprehensive research into the lives and experiences of unpaid carers. This year’s survey was carried out between June and August 2023 and completed by 1,771 unpaid carers in Scotland. We have interspersed this report with the voices of carers. These are highlighted in red, and we thank those quoted for sharing their experiences. November 2023
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55 | P a g e Note: Not all respondents completed every question in the survey, and some questions offered the ability to select more than one option. About unpaid carers An unpaid carer is a family member, partner, friend or neighbour who helps a person with daily activities that they would not be able to manage if they did not have help. This could be a partner, family member or friend who has a long term or terminal illness, someone who is disabled, has a mental health condition, is affected by addiction or who needs extra help as they grow older. There are approximately 800,000 people in Scotland providing such unpaid care1. It would cost an estimated £13.1 billion2 every year to replace the care they provide. Carers in State of Caring 2023 The demographic breakdown of carers responding to State of Caring 2023 is as follows: • 81% of respondents are female, 18% male with the remaining 1% preferring to selfidentify as either non-binary or transgender. • 3% are aged 18-34, 13% are aged 35-44, 25% are aged 45-54, 36% are aged 55-64, and 23% are aged 65+. • 29% have a disability3 • 98% of respondents are white Scottish, Irish or other white; 2% of respondents are black, Asian or minority ethnic. • 92% of respondents are heterosexual, 4% are gay, lesbian or bisexual, the remainder preferred not to say or skipped this question. • 45% are in some form of employment and 24% are retired. • 20% also have parental responsibility for a non-disabled child under 18. • 3% have been caring for less than 1 year, 25% for 1-4 years, 25% for 5-9 years, 27% for 10-20 years and 20% for more than 20 years. • 19% provide 1-19 hours of care per week, 10% provide 20-34 hours of care pre week, 15% for 35-49 hours and 14% for 50-89 hours, 42% provide 90 or more hours of care per week. 1 Scotland’s Carers update release, Scottish Government 2022 2 National Care Service Financial Memorandum, Scottish Parliament 2022 3 As described under the Equality Act 2019: this defines a disabled person as someone who has a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out normal day to day activities
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56 | P a g e • 71% care for one person, 21% care for two people, 6% care for three people and 2% care for four or more people. The people carers care for Carers responding to State of Caring 2023 provided information about who they care for and the conditions the person(s) live with: • 35% are caring for a parent/parent-in-law, 34% were caring for a spouse or partner, 38% for a son/daughter/in-law), 11% for another relative and 3% for someone else eg. a friend or neighbour. • 18% care for someone aged under 18, 22% for someone aged 18-34 years, 30% for someone aged 35-64 and 58% for someone 65 or over • Respondents were caring for people with a range of health conditions and/or disabilities: o 90% said that the person(s) they care for has a long-term health condition or illness such as arthritis, diabetes, kidney disease o 34% a mental health condition o 29% autism, ADHD or another neurodiversity o 26% a physical disability o 25% needs that arise from being older o 24% a neurological condition such as multiple sclerosis o 24% dementia o 22% a learning disability o 18% a sensory impairment o 4% alcohol or substance misuse. Thanks Carers Scotland would like to thank each and every carer who contributed to this survey, from those who helped us develop and test the survey to every single person who took the trouble and time to tell us about their experiences. Your experiences will be used to help build a society that recognises and supports carers more.
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57 | P a g e Contents Introduction 05 Key facts 06 Carers health 07 Mental health 09 Breaks from caring 13 Social connections and loneliness 15 Support and social care 18 Planning for emergencies 20 Information and technology 22 Carers as healthcare providers 23 Carers and suppport from the NHS 27 Hospital Discharge 29
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58 | P a g e Conclusions and recommendations 31 Introduction Last year, in State of Caring 2022, Carers Scotland provided a snapshot of the lives of unpaid carers in Scotland, setting out the toll that providing care was having upon their lives, finances, employment, health and wellbeing. Battered by the cost-of-living crisis and living with the ongoing effects of the pandemic, carers were breaking. Last month Carers Scotland published “State of Caring 2023: the financial impact of caring in Scotland”4 which brought no better news for carers, particularly those who were already struggling to make ends meet. Poverty and financial insecurity had grown yet again, as the cost-of-living crisis extended and continued its damage to carer households. In this report, “State of Caring 2023: A health and social care crisis for unpaid carers in Scotland” we show the ongoing struggle that carers face to access the services and support they need to provide care and to care for themselves including to take regular breaks from caring. We do not shy away from using the term “health and social care crisis” in this report. Despite their huge contribution to the Scottish economy, to our communities and to the lives of the people they care for, carers are facing deteriorating physical and mental health, loneliness and isolation with too many driven to despair and denied access to the very supports they need to maintain a healthy life. This cannot continue. In this report we set out a range of recommendations, not just for Government but for local councils, health and social care partnerships and NHS Boards across Scotland. Action is needed, urgently. Carers simply cannot wait. 4 Find this report at: www.carersuk.org/reports/state-of-caring-in-scotland-the-financial-impact-of-caring-in-2023/
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59 | P a g e Key Findings
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60 | P a g e Carers health Providing care for someone has is a highly challenging responsibility, frequently affecting the physical and mental health of those who are providing care. Throughout Scotland, unpaid carers provide high levels of care, seldom having the chance to take a break from caring. They grapple with constant anxiety, stress, and the consistent prioritisation of the person they are caring for, often resulting in numerous sleepless nights and feelings of isolation. These factors collectively contribute to physical fatigue and emotional exhaustion. It is clear from the results of State of Caring 2023 that a significant number of those who provide care are not receiving the necessary support to attend to their own health and wellbeing alongside their caring responsibilities.
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61 | P a g e We asked carers if caring had an impact on their health and wellbeing. In this context, it is no surprise that more than half (54%) said that their physical health had suffered because of their caring role, with one in 5 (20%) suffering a physical injury from caring and two thirds (69%) saying that they struggled to get a good night’s sleep. Nearly four fifths (79%) of carers said that the main challenge they would face over the coming year would be the impact of caring on their physical and/or mental health. “I constantly have lack of sleep; I assist with care during the night but unable to catch up during the day due to other chores. I am constantly tired and depression kicks in which I try to hide from my family display all's fine approach” Of particular concern in the findings of State of Caring 2023 is the number of carers who have put off healthcare treatment because of their caring role. Four in 10 (41%) carers have put off healthcare treatment, with more than two fifths of carers (46%) who care for 35 hours or more a week said that they had put off such care. This increases to 50% of carers with a disability. These findings are reinforced by comments from carers themselves, further illustrating the impact caring is having on their ability to care for their own health. “I have cancelled a hospital appointment twice as I had no one to assist me after an anaesthetic” “I have been told I may have a tumour and need operation, got no offer of any assistance from social work - have no idea what will happen if I am not able to manage.”
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62 | P a g e As well as having to put off treatment because of the demands of caring, nearly a third of carers (30%) have been waiting over a year for NHS specialist treatment and 18% have waited for more than six months. This can be compounded by the person they are caring for also having to wait for specialist treatment - 28% of carers reported that the person they were caring for had been waiting over a year for specialist treatment and 16% for more than 6 months. This can add to the physical and mental demands of caring and thus the impact on carers own health. Mental Health A large proportion of carers also reported that their caring responsibilities impacted negatively on their mental health. More than a quarter of carers (28%) said their mental health was bad or very bad. This impact on mental health was particularly prevalent amongst carers in receipt of Carers Allowance. Over one third (37%) of carers on Carer’s Allowance described their mental health as either bad or very bad. This may be because those in receipt of Carers Allowance were particularly at risk of struggling to making ends meet financially and were more likely to be cutting back on essential items such as food and heating, which could explain the significant impact their the mental health. “My mental health has rapidly deteriorated in the last year. I am in a very poor place.” “I am permanently stressed depressed And just feel completely hopeless and feel like I'm serving a prison sentence for committing no crime.”
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63 | P a g e Carers went on to share in detail the impact of caring on their mental health. The majority (88%) had difficulty sleeping or increased tiredness, continuous low mood (85%) and feelings of hopelessness (82%). Three quarters (79%) experienced an inability to switch off from worrying about caring and similar proportions experienced irritability and mood swings (77%), low self-esteem (76%) and regularly feeling tearful (71%). “Tearful & very emotional, trying hard to accept how my life has changed since my caring role began in July 2021” Of significant concern is that over a third (36%) said that they had thoughts related to self-harm or suicide. We share below just a few quotes from carers – there are many more, equally distressing that set out the devastation that caring can cause to mental health. “Would like to walk into sea, to float away, but know I can’t because there’d be no-one to step in to support dad.” “It will only end when I die, but knowing my luck there will be reincarnation and it will be worse next time” “My anti-depressants were increased recently and though my mood has been less suicidal my weight has gone up- a known side effect of the tablets- Venlafaxine-this in turn makes me feel physically and mentally worse. I have no confidence in myself and look and feel a right mess.
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64 | P a g e I exist I don't really live and the only thing that keeps me alive is my cat. She will be 14 next month and if anything happens to her, I cannot see any reason to go on.” Although a third (31%) of carers responding to this survey are receiving some form of NHS support for their mental health, and 17% are getting emotional support from their local carers centre, over a third (35%) indicated that they are not receiving any mental health support at all. A quarter of carers (25%) said that accessing counselling, therapy or a listening support service which would improve their health and wellbeing. However, too many carers are struggling on unsupported. We asked carers why they might not be seeking help with their mental health and the results revealed some stark findings. Half (50%) of carers said that they were simply too busy with the demands and responsibilities of their caring role. “No time to go” “I just feel stuck and not able to make decisions about my happiness as it always comes back to my caring responsibilities.” However, delays in NHS appointments have a critical role, with a quarter (25%) of carers saying that this was the reason they had not accessed mental health support. “I am on four different waiting lists and have been for a year”
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65 | P a g e Worryingly, the stigma around mental health seems to still play a role in carers who are not accessing mental health support as more than one quarter (26%) said they do not feel comfortable talking about their mental health. In addition to this, one in five (20%) said they were too embarrassed to speak about their mental health. Overall, it is clear, too many carers are missing out on the support they need to look after their own health and wellbeing while providing care. This is directly influencing many carers capacity to care. More than a quarter of carers (24%) said they had to stop or reduce the amount of care they provided because of their poor mental health, with family or social care having to take over in 12% of these cases. Shockingly, almost three quarters (72%) said they had to continue providing care even though they felt they were at breaking point. In addition to having an influence on their capacity to care, it is also having an impact on carers’ ability to earn; vital in these times of financial strain. Around one fifth (18%) said that they had to leave a job or reduce working hours because of poor mental health caused by their caring role.
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66 | P a g e The important role of breaks from caring More than half (58%) of carers said taking a break from caring was critical to maintaining both their physical and mental health and there is a clear link between access to breaks from caring and better health outcomes amongst unpaid carers. However, just over a third of carers (35%) in State of Caring 2023 told us that they had not had any break from caring in the past year, often saying that it is just too difficult to get the breaks they desperately need. For those who have had a break only one in 10 (11%) were able to receive this break with support from social care services, with the greatest majority relying on friends and family to have any sort of break from their caring responsibilities.
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67 | P a g e Some groups of carers are struggling most to take a break. Duration of care and hours spent caring have a clear impact and our evidence also suggests that the cost-of-living crisis and financial insecurity plays a significant part in the ability (or not) to take a break from caring. More than half (51%) of carers who told us that they are struggling to make ends meet and 42% of carers on any carer benefit have not had a break. And 40% of those caring 35 hours a week or for 10 years or more have not had a break in the last year. Worryingly, almost half (49%) of carers with a disability also told us they have not had a break. “I don't feel I am able to take the time to prioritise anything for myself. I would love to be able to take a paid break without feeling guilty and for this to be on a regular basis as any other person doing a job would expect.” “Cannot get respite from my role despite being entitled to it.” “If you were guaranteed paid respite breaks throughout the year to look forward to and plan things around it would relieve so much pressure” “I'd like to go away with my husband occasionally but we're unable to leave our son alone overnight” “It feels rare that I get to commit time to doing things just for me, without worrying about fulfilling my caring role or being interrupted.” My husband has Vascular Dementia so I would dearly love to have regular breaks from caring.
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68 | P a g e His personality has changed completely towards me, but only me, so its very draining to live with 24/7. Social connections and loneliness Carers continue to tell us that their caring responsibilities bring loneliness and isolation. Over a quarter (29%) said that they always or often feel lonely, with a further 59% saying that they sometimes feel this way. However, the level of loneliness is far higher for some groups, with a further 59% saying that they sometimes feel this way. However, the level of loneliness is far higher for some groups. Carers who told us that they are struggling to make ends meet financially were almost twice as likely to be always or often lonely (50%) and 39% of carers who are on Carer’s Allowance say they are always or often lonely. This suggests that there is a link between a carer’s financial
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69 | P a g e wellbeing and loneliness and isolation, for example, many carers have reported that they have cut back on social activities because of increased costs. And, 40% of carers with a disability also reported always or often feeling lonely, suggesting that carers with aal disability face greater barriers in supporting their mental health and wellbeing. Loneliness directly affects carers’ health and wellbeing with 49% of all carers, 54% of carers with a disability, and 57% of carers on Carer’s Allowance or struggling to make ends meet saying loneliness was affecting their health. Nearly a third of carers (21%) said that they needed support to prevent or reduce their social isolation and loneliness with one in 4 (23%) saying they need more help with maintaining and building relationships with others; relationships that have been limited or lost because of their caring responsibilities. Having a life outside caring and being able to have opportunities to build and sustain connections with others is critical for carers’ health and wellbeing. Carers stated clearly in response to the survey that having time, and money, to spend time with friends and family helps sustain and improve their health and wellbeing. More than two thirds (68%) of carers that responded emphasised this was important. This was particularly prevalent in responses from older carers (65 and over) where three quarters (75%) said that spending time with friends improved their health and wellbeing. However, as the “State of Caring 2023: the financial impact of caring in Scotland” report sets out carer poverty and the cost-of-living crisis reduces this option significantly for too many with nearly half (46%) of all carers having cut back on seeing friends and family simply to make ends meet. This leaves carers isolated without valuable support. “I haven't been able to spend time with friends for 3 years now, since I became a carer. At the moment I don't have enough money to live on so can't afford breaks, to pursue hobbies or follow interests. I also can't leave my partner overnight when he is vulnerable which is a lot of the time.” “I would like to meet up with friends I have known for 70 years but can’t leave my husband for any
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70 | P a g e length of time. Someone to step in & allow me to go away for a day would be wonderful.” Many carers also told us about the importance of hobbies and interests. 57% said that engaging in hobbies and interests would improve their health and wellbeing. “I don't have time to paint, which is a lifelong hobby.” Others talked about how the chance to have education or training opportunities would help their health and wellbeing (17%) as well as the ability to be in paid employment (32%) giving opportunities for the future and much needed financial security. Healthy activities were also important to carers. 58% said that being more physically active would help their health and wellbeing and being able to eat a balanced diet (42%) both limited by time and money. “I would like to be able to go out walking or swimming more but can’t leave my husband for very long.” “Would like more exercise, to join a class” Finally, and perhaps most importantly, carers said that having good quality care services for the person they care for (45%), getting a break from caring (58%) and being valued as a carer (54%) were critical to improving their health and wellbeing. “I don't prioritise my health and wellbeing as there is nothing in place to allow me to have a break. I would like to have a hobby again and to have friends.”
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71 | P a g e Support and Social Care Unpaid carers save Scotland £12.8 billion5 per year in social care costs yet, just a third (38%) of carers are receiving support in their caring role from formal social care services. Indeed, most (44%) support received by unpaid carers responding to this survey is informal from friends, family or neighbours. Around a third of carers (37%) reported receiving some help from a local carers’ organisation, a local charity or community organisation (10%) or from a faith organisation or place or worship (3%). Of those who were receiving social care services, 57% were satisfied with the quality of care provided. Nearly half (48%) said that they felt that they would be listened to if they raised concerns about the quality of care provided. “Alanmart Day Centre are truly outstanding. My mum attends for two afternoons per week. They treat her with dignity, kindness and love. They offer her mental stimulation and a place to socialise. They help foster her sense of place in the world as a person with dementia. She 5 Scottish Government, National Care Service Financial Memorandum Para 7.2
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72 | P a g e also receives four daily visits from Nightingale Care, funded by the council. The carers are all very competent and a few have formed a close bond with my mum.” However, only just over a third (36%) said that they felt they could rely on social care services and a similar proportion (37%) said that care support did not meet their needs or those of the person they care for. Around a third (30%) said that social care was not consistent (ie. provided by the same staff at regular times). “Care workers as individuals try very hard but are overstretched. Changes in personnel are unsatisfactory for an individual with dementia who relies on familiarity and routine. Also requires me to be more active in care giving as staff are unfamiliar with home and routine.” “Service, especially day centre, is not as good as pre Covid. There are fewer services available now as well and everything comes down to cost, not the needs/what’s best for the cared for person.” “Lack of services. No care staff. Lack of community amenities. Poor accessibility. Left to fend for yourself. Have self-directed support budget and had no support with implementing it.” “Can’t find a PA for my caree as no applicants on rural area.” “I've become disabled and struggling to cope with both of our separate needs. No staff in the Highlands to help and no support.” We asked carers what assistance from local councils and health and social care partnerships could better support them in managing their caring responsibilities. Nearly half (47%) said that councils needed to better recognise their needs as a carer and deliver increased choice (41%), better quality (37%) and more affordable (25%) services for the person they care for.
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73 | P a g e Caring responsibilities can have a significant impact on carers’ ability to maintain employment. Carers are less likely to work full-time work6 (34% v 47%) and more likely to be in part-time work (16% v 12%) than non-carers6. And, given the stresses and strains that can result from balancing work and caring, it is unsurprising that 1 in 6 carers give up work or reduce their hours to care7. Therefore, it is of significant concern that one in five (19%) carers in State of Caring 2023 said that they needed better support from social care to return to or maintain paid employment. In State of Caring 2022, carers set out at range of services that had been reduced and had not returned to pre-pandemic levels (27% were facing reduced care at home services, 44% reduced day services and 24% reduced after school services for disabled children). In 2023, there has been little improvement, with four in ten (42%) carers say that support services were still not operating at full capacity or had not reopened and that this is one of the biggest challenges they face. Planning for Emergencies The Carers (Scotland) Act 2016 sets out that carers should be supported to develop an emergency plan as part of their Adult Carer Support Plans (ACSP) and Young Carers Statements (YCS). An emergency plan is a written record of the arrangements that are in place for the cared for person if the carer has an emergency eg. if they go into hospital or are unwell and unable to care. However, it is clear that despite the Act, there is insufficient awareness of emergency plans amongst carers. A quarter (22%) of carers had never considered planning for an emergency and a similar proportion (29%) were not sure how to plan for an emergency – and would like more support with this. Even amongst those carers who have planned for an emergency, only one in five (21%) have a formal emergency plan in place, although a larger proportion (41%) have more informal plans in place; identifying people who might be able to provide care in their absence. 6 Family Resources Survey 2021/22 7 Employers for Carers, Carers UK
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74 | P a g e For those who have planned, only one in twelve (8%) have let social work services and just 3% their GP (or the GP of the person they care for) know what should happen if they are unable to provide care and support in an emergency. There is a worrying gap between the intention of the Carers (Scotland) Act and its implementation. Carers should be enabled to plan for emergencies and processes to ensure that relevant professionals involved in care are both aware of a carer’s emergency plan and be ready to step in should a carer require support. “We were in a crisis emergency. A car accident put me in hospital. Despite this we were give zero assistance to help care for my child. He missed school due to me being unable to drive as I was physically housebound. Social Work, school and Connecting Carers charity all let us down. My son was left unable to care for himself. It was a dreadful time which has left me traumatised over the lack of care. “ “I have power of attorneys in place for my parents and myself, more needs done to support all over the age of 18 getting POAs in place as a routine.” “I did try to plan for my total knee op. Social work agreed to increase the budget for time to recover. Support provider knew I needed support. They knew it was coming. But in the end, I got NOTHING from them. I was told that they didn't have anyone to help, because most workers had been transferred to supported living during the pandemic. I was asked on the Friday if I could go in the following Wednesday. OK, I get that was a bit short notice, but since the team leader did the rota, she knew I was going in, she could have juggled things. As it was, my husband had to take time off work, my daughter, who was on maternity leave had to help out and my youngest son was coming in from his work (support worker), to help out.
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75 | P a g e My daughter texted the team leader that I was out of surgery and how it went. A year later, were still waiting for her to reply.” “I have tried to plan but I don't have relatives or friends who can help. Social services can't help until an actual crisis arises.” Information and technology to support carers Every day, nearly 1000 people start caring8. This is often a time of uncertainty, managing sudden or progressive disability, illness or frailty of a partner, family member or friend and getting the right information at the right time is critical. This criticality of information was recognised in the Carers (Scotland) Act 2016, with local authorities required to provide information and advice services for carers. We asked carers where they would go for information about caring and support. The largest proportion would rely on the voluntary sector – a local carer organisation (50%), a national carers charity like Carers Scotland (14%) or a charity specialising in a particular illness, condition or age group such as Age Scotland, MS Society Scotland (15%). Friends, family and other carers (19%) and the internet (42%) are also vital sources of information. The public sector remains critical with one in five (21%) saying they would ask their GP or other health professional, 16% social work services, 5% their local pharmacy and 6% their local council. However, one in 10 (11%) carers said they did not know where to go for information, so it is clear that more remains to be done to ensure that the ever-changing population of carers can access the information they need in a way that suits their needs. Carers continually tell us of their frustrations at having to tell their story again and again to health and social care services in order to access even minimum levels of support. As part of the consultation on the National Care Service, the majority of carers (86%) surveyed at Carers Parliament in 2021 8 Analysis from University of Sheffield, Centre for Care from the UK Household Longitudinal Survey (UKHLS), also known as Understanding Society, using data from 2010-2020. The sample includes all people who participated in the survey in any of those years. Carer churn from 2011 onwards, requiring the use of the data from 2010.
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76 | P a g e were in favour of a new electronic health and social care record which has been proposed, believing it could help to share information and be identified as an unpaid carer. This support was reinforced by carers in this year’s State of Caring with two thirds (63%) saying that they would like systems in which information about they or the person they care for is shared across services, so they do not have to repeat themselves. Systems are in place to record caring on GP records; however, this is not necessarily consistent. Therefore, carers also identified the need for any system to be able to identify them as carers on the record of the person they care for (71%) and on their own patient record (69%). More than half (52%) of carers said they would like digital access to their own health and social care records and a similar proportion (54%) suggested that there should be an extra feature on such a record where they could identify themselves as an unpaid carer. Six in 10 (60%) carers said that they would like digital access to the patient and care records of the person they care for. Whilst this approach would need safeguards and consent, there are opportunities for this approach to support simplicity and flow of information from carers to professionals in improving the care and support of the person being cared for. Technology also offers other opportunities to make carers lives easier and to support improved health and wellbeing of both carers and those they care for. A third (35%) of carers said that they would like access to technology to support care such as remote monitoring (such as motion sensors, fall detectors), a quarter (25%) to technology to support vital signs monitoring (such as blood pressure, blood glucose, heart rate) and 23% to apps that help pain or mood management. A third (33%) said they would like to be able to access online support groups and activities for carers. Carers as healthcare providers More than three quarters (77%) of carers told us of the significant and varied health care tasks they provide to support the health of the person they care for. Recent calculations from the Scottish
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77 | P a g e Government9 estimate that providing these types of tasks save the health services £320 million each year. These responsibilities can range from monitoring the mental health and wellbeing of the person they care for (68%), monitoring blood pressure or blood sugar (18%), dressing wounds (16%) and hoisting (9%) through to complex health support such as supporting home dialysis or devices that provides oxygen or continuous positive airway pressure (CPAP)10 (6%), tube feeding (2%), giving injections (12%) and making decisions about whether or not to give emergency or specialist medication (24%). “Luckily, I am a trained nurse. Although the older I get, the harder it is, but my husband would refuse help anyway.” “I assist my wife in setting up her Parkinson’s medication pump and her colostomy bag.” “Have had to adjust diabetic support/care due to symptoms of dementia.” Many carers talked about how they had little choice but to provide such support due to lack of local primary and community health options for the person they care for, with four in 10 (41%) saying they needed more support from the NHS or healthcare professionals. “Due to the lack of NHS support (eg. GPs being a primary problem), I just get on with dressing wounds for the person I care for. This includes buying wound dressings (Quite expensive at times) and cleaning/applying dressings. At times I have contacted the person I care for GP practice to seek advice/help, I get a response of "go to hospital". I don't mind doing these tasks for the person I care for. The point is, even when help/support is needed from the NHS it’s not there. A message of "go to hospital" is not needed and not wanted - it doesn't warrant going to hospital, also, most crucially the person I care for would absolutely not be able to manage sitting in a hospital waiting for hours on end. So, I 9 National Care Service Financial Memorandum 10 A CPAP (continuous positive airway pressure) machine is used in the treatment of sleep apnoea. This device delivers continuous pressurized air through tubing into a mask that you wear while you sleep.
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78 | P a g e get by doing what I need to do to ensure the person I care for has a clean wound.” “I didn't have a choice taking on monitoring my Mum’s mental health and wellbeing - she lives alone and has attempted to take her own life previously. I am mental health first aid trained through my career path however, it is very different when it is your own family there is a lot more emotion attached to decision making.” “No choice as two insulin dependent sons one with progressive neurological disorder and one registers as partially sighted.” Although some carers spoke of the support and training they had received to carry out such tasks, others felt that this type of training was too limited and, for some, non-existent. “We had extensive support and training from health re: the current medication, delivered subcutaneously via a pump, and still have support from specialist nurses.” “I received some training for taking blood pressure though not that confident. It's a huge responsibility to monitor emergency medication. As a carer, you just have to do what you can.” “I have had training to use both the ceiling tack hoist and sling that we have and the mobile hoist. I am having to pack and dress a pressure sore for my cared for and I have had no official guidance or training on doing so. We visit the nurse twice weekly and show a photo of how the wound is looking and get supplies. My cared for is not able to get on the bed at the nurse so in the whole time that the pressure sore has been there (approx. 6 months) no health professional has seen the wound in person only in photos.”
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79 | P a g e “I feel out of my depth with supporting mental health and how to help, with no training.” “Given rescue medication (syringe) to use for epilepsy. Given a brief talk but no real training or any understanding of stress this causes me to make decision on when to use this for partner.” Medication As well as a range of health support, many carers also support the medication of the person they care for carrying out a range of tasks from collecting (69%) and/or ordering (68%) medication (68%), sorting into correct doses (39%) and checking and prompting someone to take medication (67%). However, nearly half (48%) administer medication and nearly a third (30%) check for contraindications or allergies with other medications. Whilst over a third (34%) of respondents had asked for and received help with ordering and collecting repeat prescriptions from their pharmacy, less have been able to access advice on how to take a medicine safely (20%), administering medications (19%) or dealing with devices such as inhalers (11%). Just under a third (31%) said that they had received help with treating minor health concerns but almost one in 10 (9%) would like more help with this. Keeping safe from COVID19 In 2022, 16% of respondents told us that they had concerns about returning to support services as they were worried that the person, they care for would catch COVID19, with over a third (34%) saying that keeping the person they care for safe (when there are less public health measures to reduce COVID19) would be a significant challenge over the next year. This year, these concerns remain for too many, with a quarter (26%) of carers telling us that keeping the person they care for safe from COVID19 would be a significant challenge in the coming year. “I have a reduced immune system, which not only affects my choice of wise social events, it also restricts the things to which I can take my husband”
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80 | P a g e Carers and support from the NHS Carers are an important support in helping the people they care for to have the best experience from the health services they receive. State of Caring 2023 asked carers about their experience of the NHS as a carer and what might improve this. This covers a wide range of areas from hospital admission and discharge, attending appointments and future developments such as virtual wards. Hospital Appointments The support that carers provide in helping the person they care for in their appointments with health professionals cannot be underestimated. Significant proportions of carers in State of Caring support the people they care for to attend hospital appointments. This can range from booking appointments, arranging transport and attending with the person. Nearly all the carers responding to the survey (92%) reported that they have supported someone to attend at least one appointment in the last 12 months, with 25% helping someone attend five or more appointments. Indeed, over a quarter (29%) have supported
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81 | P a g e someone to attend 10 or more appointments in the last 12 months. Hospital Admission We asked carers whether the person they care for had attended accident and emergency (A&E) in the last 12 months and their experience of this admission. A third of carers (34%) reported that they had attended A&E. Of these, a third (34%) had waited 30 minutes or less for an ambulance, 25% for between one to two hours and 29% for between two to six hours. One in eight (12%) waited eight hours or more for an ambulance to arrive. Half of carers (50%) who had attended A&E said that handover between ambulance and A&E staff had taken 30 minutes or less, but a quarter (26%) had waited between one to two hours, 19% between two to six hours and 5% eight hours or more. Waits for initial examination by a doctor or nurse took less than 30 minutes for almost a quarter (23%) of carers, between one to two hours for a third (33%) and similar percentage for between two to six hours. For 9% waits for this initial assessment took eight hours or more. Hospital Discharge State of Caring 2022 showed a significant lack of involvement in hospital discharge. Disappointingly, this year’s report shows no improvement.
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82 | P a g e Of those who had someone discharged from hospital, 60% were not informed and involved in decisions about this discharge . Worryingly, only 20% were asked about their willingness or ability to provide care and just 18% said that they received sufficient support to protect the health and wellbeing of the person they cared for as well as their own health. Only 20% received an Adult Carer Support Plan. The Carers (Scotland) Act 2016 places a duty on NHS boards to involve and inform carers in discharge of the person they care for. As such, it gives carers a right to be involved and promotes the importance of ensuring that carers have access to support. Thus this lack of progress by health services in effectively involving and supporting carers as part of discharge processes is deeply concerning, and in need of urgent action. “Admitted with same complaint – delirium and infection. Very little information. Drs not available. Information given on discharge summary on occasion incorrect – missed medications resulting in missed doses of cardiac medicine at home as informed on letter discontinued. Phone calls to GP practice who are very supportive resulting in phone calls to hospital. Human error medication missed on admission although list of medication and blister pack given to nurse. GP recommenced medication immediately and chemist delivered.” “He was discharged in the same state he went in with. No formal assessment was carried out nor the family asked how things were at home.” “Mum was discharged and I voiced my concerns on her getting home after having a serious infection. I had to keep emphasising that it was an infection on her tooth and was still in a lot of pain even
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83 | P a g e although on antibiotics which the hospital were guessing the infection was until a junior dr listened to me and got a community dentist out as mum’s tooth was badly infected and needed urgent removal that day and they still discharged her back home to missing her carer so she had missed her medication so I had to come up to attend to my mum. It was an absolute shambles.” There is also a worrying variance for some groups of carers. For carers with a disability, just a third (33%) reported being involved in decisions about discharge and only 14% were asked about their ability and willingness to provide care. Only 12% said that they received sufficient support to protect the health and wellbeing of the person they care for as well as their own health. Given these carers already have disabilities or health conditions that affect their day to day lives, it is striking that healthcare professionals, instead of providing additional consideration for their need to manage care alongside these, instead appear to offer even less support. “Being able to continue as I have a disability and my condition will get worse” Older carers are more likely to be asked about their ability and willingness to provide care (30%) and to be provided with sufficient support to protect their health and wellbeing and those of the person they care for (31%). However, given that the prevalence and incidence of most health conditions rises with increasing age11, it is concerning that large numbers of older carers in State of Caring 2023 are being neither asked about their ability to care nor provided with sufficient support to protect their health and wellbeing. Carers in the early stages of their caring journey also face additional barriers to support. Just one in 10 (9%) said that they were asked about their willingness or ability to provide care and a similar proportion – just 9% were offered an Adult Carer Support Plan. The lack of involvement of carers in hospital discharge planning and failure to listen to carers and provide them with sufficient support can have significant consequences for both carers 11 Scottish Public Health Observatory
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84 | P a g e and those they care for, with carers telling us about hospital readmissions and further deterioration of the person they care for. “We have had more than 20 admissions since January” “She was discharged but a stomach bug came 8 hours later and she fall going to the toilet in the middle of the night, and fractured her neck” “Went to hospital on Monday, discharged that day and readmitted by the Saturday.” Virtual Wards/Hospital at Home A virtual ward is services a “time-limited service enabling people who have an acute condition or exacerbation of a chronic condition requiring hospital-level care to receive this care in the place they call home, either as an alternative to hospital admission or by facilitating an earlier discharge from hospital.”. This enables multidisciplinary healthcare teams and remote monitoring to support someone to stay at home rather than being admitted to hospital. The Scottish Government has been keen to expand these virtual wards which are better known as Hospital at Home. However, such home based hospital level care is not yet widely available in all NHS areas in Scotland. Indeed, only 4% of respondents to State of Caring 2023 said that the person they care for had received care through a virtual ward/Hospital at Home. However, we asked all respondents - with or without experience of receiving care from a virtual ward - what they saw as potential benefits and drawbacks of such an approach. Nearly half (46%) of respondents said that it could prevent the person they care for being admitted to hospital unnecessarily, a third (33%) that it could allow them as a carer to provide more personalised care and 55% that the environment would be more comfortable. However, it is important to note that carers have concerns that this will increase the demands of their caring role. More than half (54%) felt that virtual wards/hospital at home would involve them providing more care.
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85 | P a g e Conclusion The findings in this report paint a stark picture of carers buckling under the strain of propping up a health and social care system that is under severe pressure. This pressure in the delivery of public sector services has meant that carers have been left to carry a growing burden of significant care – where social care cannot provide a service, it is unpaid carers who are expected to step in, where the NHS needs a “bed” it is carers who are left to support discharge. At the same time, carers physical and mental health continues to deteriorate, often significantly whilst they have little time, money or energy to be able to maintain their own health and wellbeing. Rightly, the Government has recognised the need to bring down NHS waiting lists and improve access to health services, including crucial mental health services. However, dedicated funding and planning is urgently needed to ensure that carers can access the health services they need and support for caring from social care services to prevent the shocking levels of poor health they are experiencing. Quite simply, action is needed, and it is needed now. Recommendations To ensure all carers get the support they need to look after their own health: 1. The Scottish Government should develop and introduce a Carers Health Plan, recognising that unpaid care is a social determinant of health, and setting out how they will in the short, medium and long term not only maintain and improve the health of unpaid carers and young carers but prevent long term health inequalities. 2. Support for mental health is of significant concern and the Scottish Government should fund dedicated, tailored mental health support for unpaid carers, including providing funding to local carers centres, disability and condition specific organisations and palliative care organisations to enable them to commission mental health support for those they support. This should include support for anticipatory grief, bereavement counselling and specific mental health support for young carers. 3. The Scottish Government should fast track unpaid carers to support to maintain their health whilst caring. This could include: introducing direct payments or vouchers for carers to spot purchase non-NHS assessments, physiotherapy, counselling and other
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86 | P a g e such services. Carers should have access to occupational support in the same way as health and care employees. 4. To ensure that carers are able to look after their own health, the Scottish Government should progress at pace actions within the National Carers Strategy to deliver flexible health appointments for carers, including providing replacement care for appointments. 5. Local health and social care partnerships and NHS Boards should develop their own local plans to deliver regular health checks for unpaid carers to identify health concerns or pre-conditions, such as high blood pressure and diabetes. 6. Local councils should seek to develop concessionary or free access to leisure services within their areas not just to carers in receipt of Carer’s Allowance but expanding to include all carers and young carers. This could include working with local carers centres and GP practices to develop social prescribing of leisure access. 7. The Scottish Government should work with NHS Boards to ensure their plans for reducing waiting lists set out how they will consider the unique and individual needs of unpaid carers, including prioritising carers for healthcare support that will support their ability to care. 8. Prior to the introduction of a right to a break from caring in the National Care Service, the Scottish Government should commit to: • increase funding year-on-year for short breaks delivered by the voluntary sector, including through the: o Time to Live fund administered by Shared Care Scotland and local carers services. o Take a Break Scotland fund for families with disabled children and young people administered by Family Fund. • increase funding year-on-year to health and social care partnerships and local councils for a range of breaks from caring and ensure that this funding is protected within their budgets. • work to expand availability of short breaks services across Scotland to ensure that when the right to a break is introduced, there are sufficient and varied services for carers to choose from 9. The Scottish Government should work with local councils, health and social care partnerships and NHS Boards to improve knowledge of carers rights amongst staff who come into contact with them and ensuring that carers can access support when it is needed by:
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87 | P a g e • improving access to Adult Carer Support Plans, in particular ensuring that they are offered as standard to all carers during the hospital discharge process. • improving referral routes between services for Adult Carer Support Plans and Young Carer Statements to ensure that carers and young carers are able to have access an assessment and services promptly. • encouraging greater and more consistent use of flexibility within self-directed support to empower and better support unpaid carers and those they care for. This should include simplifying administration, promoting the ability to employ close relatives and considering enabling unspent budgets, (which cannot be spent due to lack of services) on other costs that support wellbeing. • improving uptake of emergency planning (and anticipatory planning) within both Adult Carer Support Plans/Young Carer Statements and in care planning. 10. To improve both the visibility and value of care, the Scottish Government should introduce add a new dedicated national outcome on care to fully values and invests in those experiencing care and those providing it. 11. The Scottish Government should work with partners to develop a more coordinated approach across health, social care and local council services to refer carers to third sector and community support including, in particular food support and fuel vouchers, vital to protecting health and wellbeing.
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88 | P a g e Carers Scotland is Scotland’s membership charity for unpaid carers. We work to represent and support the approximately 800,000 people in Scotland who provide unpaid care for ill, older or disabled family members or friends – fighting for increased recognition and support for all carers and to ensure they have a voice in the issues that affect them. www.carerscotland.org info@carerscotland.org @CarersScotland /CarersScotland © Carers Scotland, November 2023 Carers Scotland is the Scottish nation office of Carers UK. Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and a company limited by guarantee registered in England and Wales (864097). Registered office 20 Great Dover Street, London SE1 4LX
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89 | P a g e Appendix 3 Analysis of Carers (Scotland) Act 2016 funding 2022-2023: responses to Freedom of Information request March 2024 1. Background In November 2023, the Coalition of Carers in Scotland (COCIS) submitted a Freedom of Information (FOI) request to all local authority areas in Scotland asking for details of what the funding to support implementation of the Carers (Scotland) Act 2016 had been spent on during 2022/23. This report presents the findings from analysis of the data provided in FOI responses and concludes with a series of recommendations to improve transparency of reporting and monitoring for Carers Act funding. 1.1 Unpaid carers: rights and support needs There are estimated to be at least 700,000 to 800,000 unpaid carers in Scotland, including 28,000 young carers12. The Carers (Scotland) Act 201613, aimed to enable unpaid carers to be better supported so that they could continue to care, if they wished to do so, whilst also having a life alongside caring. Breaks from caring are vital to carers’ health and well-being, yet survey data in Scotland has consistently shown that only 3-4% of carers report having breaks. For full-time carers, providing 35 or more hours of care a week, only 9-10% have access to breaks from caring.14 Since the pandemic, increasing numbers of short break services and day services have closed, or reduced their level of service, due to financial insecurity and 12 https://www.gov.scot/publications/scotlands-carers-update-release-december-2022/ 13 https://www.legislation.gov.uk/asp/2016/9/contents 14 Annual Scottish Health Survey
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90 | P a g e unsustainability. This has a profound impact on carers’ health and wellbeing, with recent research from Carers UK reporting that 61% of carers have said they needed more support to be able to look after their health and wellbeing.15 Moreover, Carers Centres across Scotland report a significant increase in referrals and number of carers registered with their service over the last two years16. This is combined with an increase in the complexity of carers’ support needs. Many Carers Centres report that demand outstrips their resources and capacity to deliver much needed support. 1.2 Funding to support carers and implementation of Carers (Scotland) Act 2016 When the Carers Act came into e\ect on 1st April 2018, local authorities were provided with additional funding to support implementation. The funding is awarded to local authorities in the first instance, who then allocate this to Health & Social Care Partnerships (HSCPs). Funding awarded to support Carers Act implementation has increased year on year as follows: Carers Act funding awarded to local authorities since 2018 2018/19 2019/20 2020/21 2021/22 2022/23 £19.4m £27.9m £39.5m £68m £88.4m* *This £88.4m is now the baseline level of funding which is awarded annually. In a letter to councils and local integration authorities on 9 February 202217, Humza Yousaf, then Cabinet Secretary for Health and Sport, stated: “Effective support for carers is not a new issue but the consistent feedback from carer representatives is of sustained pressures on carers; huge demand for carer support; and local carer support organisations running beyond capacity. This makes it even more important that the substantial Carers Act funding uplift for 2022-23 goes to delivering the intended expansion in local carer support services. I therefore ask for your support 15 https://www.carersuk.org/media/xgwlj0gn/soc23-health-report_web.pdf 16 https://www.carersnet.org/wp-content/uploads/2023/09/Carers-Centre-Funding-Report-Aug23FINAL.pdf 17 https://www.gov.scot/publications/carers-act-funding-letter-to-councils-and-integration-authorities/
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91 | P a g e in ensuring these additional resources are allocated in full to expanding support for unpaid carers.” This report provides details of the data received from 31* local authorities relating to Carers Act Funding awarded and allocated in 2022/23** to Health & Social Care Partnerships (HSCPs); spend of Carers Act funding allocated to HSCPs; and the reliability of figures provided in FOI responses. *One local area did not provide an FOI response. **COCIS also submitted a FOI request for Carer Act funding allocated to HSCPs and associated spend in 2023/24. Some areas were unable to respond as it was too early to report on spend this year. However, brief analysis of figures which some areas did provide, showed that the proportion of awards which were allocated to HSCP was broadly equivalent to 2022/23. Similar spending trends to those contained in this report are therefore predicted in 2023/24. 2. Headline findings and recommendations Carers Scotland Act funding awarded and allocated FOI responses were received from 31 local authorities. Data provided indicates: • Of the £88.4m awarded to local authorities only £74.9m was allocated to HSCPs. • Twelve local authority areas allocated less than 80% of the award received to the HSCP. In ten of these areas the award/allocation ratio was even more pronounced (<70%). This suggests between £12.4m to £13.5m of Carers Act funding awarded was not passed onto HSCPs (allowing for two areas that did not report their allocations). While a proportion of this funding may have been used by local authorities to deliver young carer services, where this function is not delegated to HSCPs, there is still likely to be a significant shortfall. Spend on support for carers / implementation of Carers Act Of the £74.9m reported as allocated to HSCPs, analysis of the reported spend suggests: • 92% of funding (approx. £69m) was spent on direct or indirect support for carers / implementation. • 8% of spend (approx. £6m) did not relate to support for carers / implementation or was categorised as not yet allocated / other.
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92 | P a g e This indicates that the ‘real’ spend on support for carers / implementation of Carers Act by Health and Social Care Partnerships in 2022/23 was up to £19m less than the £88.4m of funding awarded. Reliability of data There were concerns related to the reliability of data provided in FOI returns, including: • Di\erences between figures provided for the funds allocated to the HSCP and actual reported spend suggests there were under/overspends in ten areas. • Discrepancies were noted by some Carers Centres in relation to the some of the data reported. • A response to a separate FOI request on Carers Act funding in 22/23 (submitted by an unpaid carer) presented a di\erent set of figures than those which were provided in the FOI response (for the same area) for this report. • Comparing data provided in FOI responses to forecasting within the Financial Memorandum produced for the National Care Service (Scotland) Bill suggests the estimated figures for existing spend on Short Breaks may be unreliable, overestimating the amount spent. As Carers Act funding is not ringfenced, many HSCPs do not appear to routinely record, track and monitor spend, which a\ects the reliability and transparency of data. Recommendations To improve transparency in the reporting and monitoring of Carers Act funding the following recommendations are made for Scottish Government and local authorities: 1. Provide significantly more funding directly to third sector organisations (including Carer Centres) to expand and develop services to support unpaid carers, including a wider range of short breaks opportunities 2. Ring-fence Carers Act funding and develop consistent budget headings for use by all local areas. 3. Develop financial reporting processes to ensure robust tracking, monitoring and forecasting of spend under each budget heading. 4. Ensure HSCP Annual Performance Reports provide details of support for carers / Carers Act implementation and Annual Accounts provide figures for Carers Act funding, to improve transparent reporting of impact and spend.
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93 | P a g e 3. Carers (Scotland) Act funding awarded and allocated 2022/23 FOI response data indicates that, of the £88.4m Carers Act funding awarded to local authorities in 2022/23, £74.9m was then allocated to HSCPs. This suggests that between £12.4m to £13.5 m of Carers Act funding awarded to local authorities was not passed on to HSCPs (see 5.1 below for more detail). Figure 1: Carers Act funding awarded / allocated in Scotland Figure 2 below shows the breakdown of Carers Act funding awarded compared to funds allocated to the HSCP in each local authority area.
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94 | P a g e Figure 2: Carers Act funding awarded and allocated by area (in £m’s) FOI responses show that 16 areas reported award and allocation totals that were broadly similar (where between 110% and 80% of awards were allocated to HSCP). Two areas reported moderately higher allocations (>110%) to the HSCP than funding awarded (Fife 117%; Glasgow 115%). However, in the remaining 12 areas the funding allocated to HSCP was less than 80% of the grant awarded. Of these, more significant disparity between awards and allocations (<70% allocated to HSCP) was reported by ten areas (Argyll & Bute 23%; East Ayrshire 23%; East Dunbartonshire 23%; East Renfrewshire 30%; Highland 43%; North Lanarkshire 67%; Orkney 54%; Perth & Kinross 20%; Scottish Borders 57%; Western Isles 50%). Shetland did not provide a figure for their allocation to HSCP and explained that this was because funding was "not separately listed as ring-fenced therefore diGicult to identify". Clackmannanshire did not submit a FOI response. 4. Spend of Carers Act funding To support the collection and analysis of data in the FOI request COCIS collaborated with HSCP Carers Leads to identify key spend categories which were aligned with the Carers Act (see Appendix 1). These categories were then grouped under four main headings:
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95 | P a g e • Direct support for carers / implementation of Carers Act • Indirect support for carers / implementation of Carers Act* • Not related to carer support / implementation of Carers Act • Not yet allocated / other *For the purposes of this report, spend reported as ‘Strategic Posts within the HSCP’ and ‘Health Board’ was categorised as indirect support for carers / implementation as no further information was available to fully analyse/breakdown these figures. 4.1 Spend of Carers Act funding awarded to local authorities Of the total funding awarded to local authority areas (£88.4m) across Scotland the percentage spend under each of these headings can be seen in Figure 3 below: Figure 3: Scottish average % spend of Carers Act funding awarded to local authorities *The ‘missing’ 15% in this figure relates to the funding which was not allocated to HSCPs. 4.2 Spend of Carers Act funding allocated to HSCPs When reported spend was analysed against the £74.9m of funding that was reported as actually allocated to HSCPs, there was a 12% variance in the ‘direct support for carers/implementation’ heading. FOI responses suggest that of the £74.9m allocated to HSCPs: • £59m was spent on direct support for carers / implementation • £9m was spent on indirect support for carers / implementation • £2m of spend was not related to support for carers / implementation • £4m was either not yet allocated or related to ‘other’ spend
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96 | P a g e Figure 4: Scottish average % spend of Carers Act funding allocated to HSCPs 4.3 Spend by local authority area Figure 5 below shows reported spend by local authority area. Figure 5: local authority spend of funding allocated to HSCPs (in £m’s) Two areas (Clackmannanshire and Shetland) did not report on any spend. As noted above, Clackmannanshire did not submit a FOI response and Shetland explained they
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97 | P a g e could not provide information on funds allocated to the HSCP / spend due to Carers Act funding not being ringfenced therefore di\icult to identify. 4.4 Not related to support for carers / implementation Figures provided suggest that a total of £1.9m of reported spend was not related to support for carers / implementation. This comprised of ten areas which reported funds being used to o\set ‘Loss of income / Waiving Charges’ (Argyll & Bute £103k; Dundee £250k; Fife £332k; Glasgow £331k; Inverclyde £317k; Midlothian £60k; North Ayrshire £157k; South Ayrshire £170k; South Lanarkshire £150k; West Lothian £29k). 4.5 Not yet allocated / other Within FOI responses ten areas reported spending that was categorised as either ‘not yet allocated’ or ‘other’. This amounted to £4.1m. As the 2022/23 financial year ended in March 2023, it is assumed that spend identified as ‘not yet allocated’ was not spent within 2022/23. Area Not yet allocated / other Aberdeen £132,604 Dundee £98,461 East Dunbartonshire £88,538 East Lothian £186,413 Falkirk £23,000 Inverclyde £284,120 North Ayrshire £1,743,307 North Lanarkshire £1,032,017 Perth & Kinross £26,000 South Ayrshire £40,000 West Dunbartonshire £505,505 4.6 ‘Real’ spend of Carers Act funding on support for carers / implementation Removing both the ‘not related to support / implementation’ (£1.9m) and ‘unallocated / other’ (£4.1m) figures from the total reported as allocated to HSCPs (£74.9m) suggests the ‘real’ spend which can be accounted for was approximately £69m. This means that potentially, up to £19m of Carers Act funding awarded to local authorities in 2022/23 was not spent for on supporting carers (allowing for the two areas which did not report on spend). 5. Reliability of figures provided in FOI responses A number of discrepancies were noted through analysis of the data provided in FOI responses. These are summarised below, alongside any additional comments provided.
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98 | P a g e 5.1 Carers Act funding awarded and allocated As noted above, of the £88.4m Carers Act funding awarded in 2022/23, only £74.9m was reported as allocated to HSCPs. This indicates that up to £13.5m was not passed on. Allowing for variances in reporting (i.e. grants awarded to Clackmannanshire and Shetland which were not reported on and ‘di\erences in reported allocations and spend’ (see point 5.2 below)) this figure could be slightly lower at £12.4m. While a proportion of this funding may have been used by local authorities to deliver young carer services, where this function is not delegated to HSCPs, there is still likely to be a significant shortfall. 5.2 DiRerences in funds allocated and reported spend In eleven areas there were di\erences between the funds reported as allocated to the HSCP, compared to the actual spend figures provided (resulting in a total reported overspend of £470k). In seven of these areas the discrepancies were minimal (< £25k over/underspend), however in the remaining four areas these were more notable: • Overspends: two areas provided figures which indicated spending was higher than the funds allocated to the HSCP (Highland £977k; Scottish Borders £28k). Highland provided an explanation that "NHS Highland have a budget for Carers Services that is comprised of both Carers Act Implementation funds and additional funding NHS provides from its general grant funding". • Underspends: two areas provided figures which indicated that Carers Act funding allocated HSCP was not fully spent during 2022/23 (Midlothian £477k; West Lothian £43k). Midlothian provided an additional comment that the ‘Shortfall in financial year 2022/23 has been committed to other years. Note that expenditure in 2023/24 exceeds budget. It would not give an accurate year on year comparison if the shortfall was marked as ‘used for a diGerent purpose/not allocated’ without a corresponding adjustment in financial year 23/24.’ Whilst noting this, it has been included here as an underspend as this report was only able to assess figures provided for 2022/23 financial year. 5.3 Voluntary sector funding and Carer Centre feedback Voluntary sector organisations (including Carer Centres) provide a range of services and support to meet the needs of carers and are key stakeholders in supporting the implementation of the Carers Act. As such, HSCPs provide a level of funding to Carer Centres and other voluntary sector organisations to undertake these services. FOI responses suggest funding in 2022/23 for Carer Centres, Young Carer Services and other voluntary sector organisations across Scotland amounted to £17.2m. Interestingly, within FOI responses 12 areas reported no spend at all against ‘Carer Centres’. One of these areas (West Lothian) provided additional information that their funding to Carers Centres comes from ‘core funding and not from the funding allocated to support the implementation of the duties in the Carers (Scotland) Act 2016’. It is unclear from FOI responses whether this may be the case in other 11 areas and/or if funding was allocated / categorised within one of the other budget headings.
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99 | P a g e FOI responses were also shared with Carers Centres, some of whom noted a number of additional discrepancies: • Inconsistences in categorisation of spend: the way spend was categorised made it unclear how funds had actually been allocated and spent. For example, one area reported spend against ‘Carer Support Plans’ (generally undertaken by Carers Centres) but this funding was not allocated to the Carers Centre; and as highlighted above, 11 areas reported no funding at all being allocated to Carers Centres. • Variances in funding allocated and received: some FOI responses reported a higher level of funding allocated to Carers Centres than that which was actually received. • Un/reliability of FOI figures provided: in one local area an unpaid carer submitted a separate FOI request on spend of Carers Act funding in 2022/23. The figures provided in response to this separate request7 were di\erent to those received in the FOI response for this report (for the same area). It is therefore unclear which set of figures is correct. 7 7 https://www.whatdotheyknow.com/request/request_for_detailed_information_6?nocache=incoming2532145#inco ming-2532145 5.4 Reviewing and forecasting Short Break funding As well as highlighting challenges with the accurate recording and reporting of Carers Act funding, the information provided in the FOI returns also raised questions around the reliability of financial forecasting. The National Care Service (Scotland) Bill includes costings for the implementation of a right to breaks from caring within the Financial Memorandum (FM). In the FM the total cost to implement a right to breaks from caring have been calculated, and the current estimated spend by local authorities on short breaks has then been deducted from this total. Within these calculations £57.7m of Carers Act funding has been included as part of the estimated current spend on short breaks (adults and young carers) 18. However, FOI responses submitted for this report suggest the actual spend on short breaks totalled £26.8m in 2022/23. This would leave a shortfall of £30.9m in the calculations for the Financial Memorandum. 6. Conclusions and recommendations The FOI responses have raised a number of concerns around both the allocation of Carers Act funding and the actual spend on supporting carers / implementation. This included funding awards which were not fully allocated to the HSCP, as well as reported spend on areas which were not related to support for carers / implementation or funds which were reported as ‘not yet allocated/other’. 18 Social Work Scotland (2024): Costing Carers’ Rights to a Break Comments on the Revised Financial Memorandum of December 2023 to the National Care Service (Scotland) Bill 2022, pages 21-22: [1] 9 https://www.carersnet.org/carers-collaborative/
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100 | P a g e In addition, as Carers Act funding is not ring-fenced, the availability, reliability and transparency of data showing how money was (and is being) spent is challenging. Indeed, Equal, Expert and Valued reports produced by COCIS in 2022 and 20239 show that details of Carers Act funding and spend very rarely appear within HSCP Annual Performance Reports or Annual Accounts. These key areas of concern combine to make it extremely challenging to fully track, understand and assess the impact of funding on the lives of unpaid carers, and the implementation of the Carers Act. This report therefore makes the following recommendations for Scottish Government, councils and local integration authorities to improve transparency in the reporting and monitoring of Carers Act funding: 1. Provide significantly more funding directly to third sector organisations (including Carer Centres) to expand and develop services to support unpaid carers, including a wider range of short breaks opportunities 2. Ring-fence Carers Act funding and develop consistent budget headings for use by all local areas. 3. Develop financial reporting processes to ensure robust tracking, monitoring and forecasting of spend under each budget heading. 4. Ensure HSCP Annual Performance Reports provide details of support for carers / Carers Act implementation and Annual Accounts provide figures for Carers Act funding, to improve transparent reporting of impact and spend.
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101 Appendix 1 Categorisation of reported figures within the headings used in this report to analyse spend of Carers Act funding: Direct support for carers / implementation • Carer Centres • Young Carers Services • Other voluntary sector • Short breaks (adult carers) • Short breaks (young carers) • Other (adult carers) • Other (young carers) • Awareness raising • Engagement / consultation • Carer support posts in HSCPs Indirect support for carers / implementation • Strategic posts in HSCPs • Health board Not related to support for carers / implementation • Loss of income (Waiving Charges) • Implement Living Wage Other / not yet allocated • Other / not yet allocated
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102 Appendix 4 Update from Lanarkshire Carers for North Lanarkshire Committee 2023 Background and General Information At the Annual General Meeting that took place on 27 September 2023, Lanarkshire Carers presented their Annual Report for the reporting year 1 April 2022 to 31 March 2023: Carers at the Centre. This committee update paper should be read in conjunction with the full annual report that can be accessed using the link below, along with the accompanying documents that provide further information. Lanarkshire Carers Annual Report 2022- 2023: Carers at the Centre 132 reasons to come and have a conversation with Lanarkshire Carers Lanarkshire Carers Service we offer booklet Caring roles are unique because individual circumstances are different for each person. The contribution carers make across every locality in Lanarkshire is enormous, with people of all ages and in various situations providing care for some else. Lanarkshire Carers works with and for carers to make a positive difference to their lives. We are commissioned by Health and Social Care North Lanarkshire (HSCNL) to provide information, advice and direct support services to unpaid carers and by South Lanarkshire Health and Social Care Partnership (SLHSCP) to provide engagement, empowerment, representation, information, advice and direct support services to unpaid carers. Services are open to all carers aged 18 years and older living in Lanarkshire. Both contracts are currently in place until 2025. Both also include delegated responsibility to lead on the provision of Adult Carer Support Plans in specific circumstances. Every carer has a right to be offered an Adult Carer Support Plan and we have a partnership statement in place that sets out local arrangements and responsibilities to meet this duty. Accessing early support is key to making sure carers can manage their caring role. We provide personalised help throughout the caring journey, working with individuals
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103 and groups, building relationships with carers, helping them to identify and address their support needs and making sure carers know their rights. We offer support and services across Lanarkshire through community outreach work, as well as in our own premises in both Hamilton and Airdrie. Lanarkshire Carers staff are co-located in social work localities, the three hospital sites and community health venues. To further enhance our generic services, there is also tailored support for carers from Black, Asian and Minority Ethnic (BAME) communities, Young Adult Carers aged 18–25 years old and other groups of carers who are under-represented. We work in partnership with a range of organisations and services that also help carers. Carers most frequently self-refer to the organisation. Facilities are also in place for professionals from any organisation to make direct referrals. The organisation continues to experience, and report increased levels of new referrals, along with increased complexity of the caring roles involved. Lanarkshire Carers delivers personalised, and case managed, emotional and practical help through meaningful, outcome focussed conversations with trusted, skilled and experienced professionals. A personal outcomes approach to carers support is integral to our work, providing the right support at the right time. It starts with a conversation, helping carers to understand the impact their caring role is having on their lives, what’s important to them and who can best offer the support they need. We take a strength-based approach encouraging carers to consider what they can do for themselves; what support is available through wider community resources and through the services we provide. We use the national wellbeing indicators as a guide to help carers to think about what matters to them, developing personal outcomes that form an Adult Carer Support Plan. This is underpinned by anticipatory and preventative measures and has a focus on providing tailored support to empower the carer. Thinking ahead and planning for the future are key aspects of the conversations we have with carers. Plans are agreed in partnership with carers and rather than focus on paperwork being completed, the emphasis is on the professional relationship and the conversation. This is recorded in a purpose build client relationship management system and the process is further supported through CarerSpace; an online portal for carers to start or continue their conversation with us. Carers do not have to repeat their story as they are already using the outcomes of their conversations to co-produce an Adult Carer Support Plan. The information is all in one place, and all the toolkits and conversations are linked together.
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104 Lanarkshire Carers Key Figures for North Lanarkshire (from April 2022 to March 2023) • 1,127 New carers in contact with Lanarkshire Carers. • 5,976 Carers are known to Lanarkshire Carers. • 3,363 Carers accessed Lanarkshire Carers services in reporting period. • 26,062 Services access by carers from Lanarkshire Carers. • 182 Young Adult Carers known to Lanarkshire Carers. • 363 Carers from Black, Asian minority ethnic (BAME) communities known to Lanarkshire Carers. • 817 Carers attended one or more training sessions. • 99 Carers took part in one or more carers week events. • 73 Carers referred to counselling and wellbeing service. • 27 Carers benefitted from the supermarket voucher initiative. • 928 Carers benefited from grant funding. • 1,173 Carer card holders. • 1,395 Carers were signposted, referred, or informed about the role of partner organisations (2022- 2023). • 912 Adult Carer Support Plans progressed by Lanarkshire Carers. We have been able to sustain increased service delivery levels through our system change and practice development. This is particularly relevant in relation to ACSP figures reported when an artificial peak was created last year through an additional resource allocation. This involved re prioritising activities for a short period of time in response to the national winter funding package for unpaid carers. Our recorded conversations with carers have been consistently higher each quarter this year compared to the previous 3 years, with one exception – the peak due to the winter funding package. Our conversation first approach continues to support all grant funding allocation. Achieving Quality Standards - Excellence for Carers Award Lanarkshire Carers has recently successfully achieved the Carers Trust Excellence for Carers Award. The award follows a rigorous assessment of Lanarkshire Carers services to unpaid carers across both local authority areas, as well as the quality of our leadership, staff, internal processes and engagement with key local partners and
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105 stakeholders. By achieving the Excellence for Carers Award by Carers Trust, Lanarkshire Carers demonstrates: • A clear and complete approach to involving carers in the work, activity and life of the organisation at every level in meaningful ways that value carers and makes a real difference to them. • A positive approach to the use of technology and digital to support carers and ensure services to carers are inclusive, accessible, and seamless. • Everyone at the organisation is focused on making a difference for and with carers. They are clear about what their purpose is, and they take a solution focused approach that helps carers articulate the challenges that they are facing and the outcomes they are seeking to achieve. • The leadership of the organisation is an example of best practice, nurturing sustainability, lateral leadership, and succession planning, which allows for a clear focus on strategic development that has unpaid carers at its heart. • There is an abundance of team passion, commitment, and enthusiasm, at all levels, to provide excellent services for carers. • Good practice in identifying unpaid carers and supporting and being inclusive to carers from a range of backgrounds and identities, particularly carers from BAME and LGBTQ+ communities. • Lanarkshire Carers approach to supporting staff wellbeing was impressive – its carers for carers and carers for its staff and volunteers. In making the award, Carers Trust has stated in the report that: “Lanarkshire Carers demonstrates excellence across all the Excellence for Carers standard areas. The service is well run, delivers a broad range of person-centred services for carers, and has built positive partnerships with external organisations for the benefit of carers in the local area." "The team are focused on delivering excellent services but are clear on where their expertise is and recognises the value of partnership working with others to support carers in their communities." "The organisation demonstrated a clarity of purpose and Carers Trust are impressed with the whole organisation- the Trustees on the Board of Directors, Management and Staff team should be immensely proud of the work that they do to make a difference to the lives of unpaid carers.” It was also noted that Lanarkshire Carers have a strong commitment to carry on making developments and improvements: “There was clear evidence of nurturing sustainability, lateral leadership and succession planning, which allows for a clear focus on strategic development, is embedded in their collective thinking and approach… a clear, cohesive and holistic narrative on their strategic focus on sustainability, outcomes and taking a carer-led approach to their delivery, culture and systems and processes… a genuine sense of
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106 inclusion with all staff, they are meaningfully involved in service development and there is a sense of shared ownership when it comes to the successes that they achieve." As an organisation run by, with and for carers we are absolutely thrilled to receive this external verification of our positive approach and clarity of purpose. It was great to be able to share this news with our Full Members who attended our AGM, especially when the theme of this event was Carers at the Centre. The team work incredibly hard to ensure quality standards are embedded in all areas of our work and to make a positive difference to the lives of carers across Lanarkshire. Governance, Involvement, Participation and Feedback As a carer-led organisation, carers can choose between Full or Affiliate Membership and can easily change between the two. The Board of Directors is elected from and by the full membership and meets regularly throughout the year. Directors volunteer their time to carry out this governance role and have overall responsibility for the organisation, our mission, vision and strategy. Some Directors currently care for someone whilst others have cared for someone in the past or have particular skills and knowledge the board needs. They all share a genuine and strong commitment to influencing and shaping services that identify, engage, inform, involve, empower and support carers. Board members make a significant contribution to the organisation both individually and collectively. The Board adopted The Scottish Good Governance Code for the Third Sector which ensures good practice. Connecting with members of the organisation is a priority and activities with Full Members have taken place throughout the year. This includes information sessions for carers who want to find out more about the organisation and how they can get involved. This work has been supported through participation and involvement training for Full Members. We recognise the contribution carers make, the rewards and challenges of caring and the impact a caring role can have on many aspects of life. Carers make time during their busy and demanding days to contact us about our services and the feedback highlights why the information, advice and support we provide matters. Comments are always read and shared, and it is very reassuring to hear about the positive difference made. We have published a collection of our #feedbackfriday posts in the booklet linked above. Through quarterly contract monitoring reporting arrangements, we provide numerous case studies and evidence of carers feedback and evaluation. We also prepare other reports and responses as required. An example of this recently was the Creative Break Time to Live snapshot report. We contacted every carer who had received micro grant funding between January and June 2023. Over 100 carers took the time to respond, telling us how we are getting this right for them. We always ask about the
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107 person they care for and when issues are identified we offer advice and can also negotiate, represent and advocate on behalf of carers in relation to this. 100% of carers responding felt listened to and supported by the member of staff who completed the grant plan with them. 100% of carers responding said a grant payment is their preferred way of accessing a short break from caring. Carer engagement and involvement is an important part of our work. We support carers to have their voices heard through local and national focus groups, surveys, consultation and other activities. The organisation also represents carers locally and nationally. Lanarkshire Carers Short Breaks Bureau (SBB) The SBB has local and national prominence and is an integral part of our commissioned service. In September 2023 we represented Lanarkshire at the International Short Break Association (ISBA) Conference in Poland. We are Shared Care Scotland’s local delivery partner for Creative Breaks Time to Live funding. We have levered in and managed extensive additional resources and funds that help support carers to access short breaks and deal with the financial impact that caring often has. The amount of individual carer grant funding Lanarkshire Carers has awarded to carers has increased significantly with a focus on supporting those in need of a personalised short break from caring as well as those needing financial assistance to cover essential and emergency costs. The ScotSpirit Holiday Voucher Scheme ensured additional breaks and holidays for carers across Lanarkshire through our local delivery of this national scheme. Developing short break initiatives such as Respitality has further expanded options for carers and we continue to distribute the Lanarkshire Carer Card initiative with access to many perks and discounts. The move to a digital card has maximized efficiency in managing this scheme, which we know is valued by many carers in Lanarkshire who apply/renew each year. We have responded to the cost-of-living crisis through partnership and development to meet the needs of carers quickly and efficiently. Lanarkshire Carers Flexible Support Fund supports this crucial part of our work, ensuring funding is available as part of a support plan for carers when this need is identified. These grants can help meet the costs of a range of things to help improve carers situations and are linked
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108 to a recorded outcome in an Adult Carer Support Plan. Many carers are facing immediate financial hardship and our response included establishing a Carer Supermarket Food Voucher Initiative. This proved to be extremely well received, offering immediate help to carers who are struggling financially. Due to the outcomes achieved, we are continuing this initiative, funded through Carers Flexible Support Fund and have developed the processes required for its successful delivery. Lanarkshire Carers distributed/approved a total of £659,181 grant payments during this reporting year equating to £12,676 of direct carer grants per week. This is a remarkable achievement for a small team who are making a very big impact. Recognition of the carers representatives involved is highlighted as they volunteer their time to bring lived experience to the grant funding panel process. Lanarkshire Carers Black, Asian and Minority Ethnic (BAME) Carer Support and Equalities Service Development activity has taken place through the delivery of our Making Carers Count project with a focus on LGBTQ+ carers. Innovation and best practice are central to our work and this year our staff learning and development programme has included the delivery of bespoke and specialised, diversity, equality and inclusion opportunities. This work also helped us achieve the Scottish Rainbow Partnership award and we were delighted to be Proud Scotland Small Employers Award winners in June 2023. Carers Census Data Lanarkshire Carers contributes to the requirement of Carer Census Data returns for North Lanarkshire, shared annually with Scottish Government to measure the impact of the implementation of the Carers (Scotland) Act 2016. We have developed systems to capture and report data on carers who access support through our service. For 2022-2023 reporting period, Lanarkshire Carers included 6,633 carer records in our return to Scottish Government (3,353 North Lanarkshire, 3,280 South Lanarkshire), detailing the types of support carers required and the how carers are supported to meet their needs. We carry out regular data cleansing activity to ensure the data we record and report on is as accurate as possible. The total number of carers supported figure reported at any time reflects only those that are currently
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109 known to the organisation and not the many carers who have moved on from the organisation due to a change in circumstance and/or support needs. Care Inspectorate ‘Understanding carer’s experiences of social work and social care service delivery’ Inquiry Following our contribution to the enhanced inquiry in North Lanarkshire, we received a detailed report from the Care Inspectorate outlining the key messages and areas of learning and improvement. Lanarkshire Carers noted a number of highlights in the local report and our practice leading to more positive experiences for carers in Lanarkshire including that: • 69% of carers in North Lanarkshire said their Adult Carer Support Plan helped them do things that are important to them compared with 42% in Scotland. • 74% of carers in North Lanarkshire said their Adult Carer Support Plan helps make sure that they get the right support to keep caring compared with 54% in Scotland. One carer from Lanarkshire, quoted in the report, refers to support available for carers and draws attention to the impact of our approach: “All the above support is provided to me by Lanarkshire Carers. They have always been transparent, honest, and timely, I would have been lost without the help and support Lanarkshire Carers have provided to me.[..] Funding to buy a cooker and folding bed from [Lanarkshire Carers Short Break Bureau] supported me through a hard time and helped [..] to cook for my family”. It was also good to see areas of our practice identified as possible positive practice examples with the care inspectorate highlighting our CarerSpace Portal, Hospital Linked Support Programme and BAME and Equalities service in their final presentation. Exemplary Status for Carer Positive This award is presented to employers in Scotland recognised for exemplary support for working carers and we were delighted to achieve this in March 2023. The health, wellbeing and development of all our staff remains a key priority supporting a diverse and highly skilled workforce able to meet the needs of carers. We have an Employee Assistance Programme and an extensive Staff Learning and Development
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110 programme. Our staff team go above and beyond to achieve the outcomes reported by the organisation with outstanding achievements over the last year. Lanarkshire Carers is a local employer of 38 people who mainly all live and work within Lanarkshire, many of whom are carers themselves. Partnership Lanarkshire Carers is an active participant in each of North Lanarkshire Local Consortiums, Strategic Commissioning Group, Carers Oversight group and other local networks and partnerships. Links are also being re-established with the Locality Planning Groups. We are supporting the consultation process in relation to the new Carers Strategy and other key documents in North Lanarkshire, providing a voice and input from and on behalf of unpaid carers. We deliver a range of information activities and presentations about the role of our organisation. www.lanarkshirecarers.org.uk 01698 428090 / 01236 755550 Author: Barbara McAuley, CEO, Lanarkshire Carers 3 October 2023
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111 Appendix 4 North Lanarkshire Carers Together (NLCT) provide a Campaigning and Representation service and are the dedicated Information and Advice service for carers and professionals who come into contact with carers. Information Over the past reporting period we have worked with 475 carers, 298 of those were new to the service and had not been in contact before, with the remaining 177 coming back to us as trusted providers of Information, Advice, and an active referral service. It is pleasing that so many carers trust our staff, and we have seen the number of contacts we make with carers increase significantly to an average of 4.6 times. This is more time spent emotionally supporting carers, providing information on their rights, and actively linking them into available supports in the community. The average length of each of these contacts is just under 1 hour, so this is reflective of the ongoing and increased challenges being faced by carers during the current climate of cost-of-living pressures and social care crises. The services our staff provide however, mean that more than 86% of carers who contact us can have their support needs met by us and our partners, rather than statutory services. This is testament to the vibrant third sector and the relationship we enjoy with so many of our brilliant partners. During the carer contacts, 1024 signposts and referrals were made on behalf to carers. These included carers directed to Bereavement/Counselling, Care Opinion, Carer Support across a range of organisations, Community Groups, Funds & Trusts, Tackling Poverty Team, and Health & Social Care services. In May 2023 we sent out over four thousand newsletters providing a range of information on ours and partners services. We have also increased our presence online via our website and social media channels. We use Facebook and Twitter and have seen our Twitter presence increase by over 27% in the last 2 years, and Facebook increase by 49% in the last 2 years. On Facebook alone, we reached 43,825 people in the last year. Our Mail Chimp platform is our way of keeping carers and our partners up to date with newsflashes and alerts direct to their email inboxes. Our experienced staff team have noted that our response and reaction rate to these emails are better than average comparative to other third sector organisations we have worked within. These platforms are a modern, convenient way to take part in snap polls, surveys and to keep up to date with information relevant to carers and the people they care for. While we still engage with carers face to face and in-person, the use of these platforms mean we can optimally meet our contractual obligations regarding engagement and participation.
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112 A novel way of ensuring information is available; our listening audience continues to grow as we share the stories of carers and partners through our Carer Podcast. Following the launch last year with the actor Jane McCarry, we have other interviews available to listen, including a local GP discussing the importance of carers being supported and listened to; a carer discussing the challenges and sharing her story in accessing respite for her husband; and a Senior Officer from Health & Social Care discussing the upcoming refresh of the North Lanarkshire Strategy for Carers. We were delighted to have recently been entrusted with additional investment to recruit a Carer Information & Engagement Worker (Equalities) with a focus on providing a service to marginalised communities, such as the BAME, LGBTQI+, and rural communities of carers. Carer Engagement & Representation Aligning closely with the North Lanarkshire Engagement and Participation Strategy and the Coalition of Carers in Scotland 3 Best Practice Standards for Carer Engagement, we recognise carer engagement and representation is essential to the development of local services and policies and to feed into national and local consultations. This must be meaningful, supported, funded and crucially the loop needs to close in that there has to be feedback to carers who give their time to contribute. NLCT frame all consultation with our guiding principle ‘We Asked, You Said, We Did’ and is our promise to those carers who form part of our Carer Forum. The Forum meets in-person, digitally and also has a closed private social media group. It has eighty-eight members. The Care Inspectorate is a scrutiny body which supports improvement in the quality of care in Scotland to ensure it meets high standards. Where they find that improvement is needed, they will support services to make positive changes, including recommendations to underpin that support. On hearing the Inspectorate’s intention to undertake a National Inquiry into carers’ experiences of adult social work and social care, which included a more detailed scrutiny into 5 Health & Social Care Partnership areas, North Lanarkshire Carers Together campaigned in late February last year to have North Lanarkshire as one of those areas, and following this intimation, North Lanarkshire Health & Social Care volunteered to take part and we were delighted to lead on this locally from April through to June, in partnership with Lanarkshire Carers. It was a detailed and intensive piece of work including scrutiny of Health & Social Care as well as surveys and facilitated discussions with both Carer Centre’s staff and managers, a specific survey by a nominated staff member in both Carer Centre’s and detailed group and one-to-one discussions with carers themselves into their experiences. It was not a good picture for carers across Scotland, but carer’s experiences were heard to be better in North Lanarkshire compared to other areas in Scotland. We also led on other consultations to shape services including Scottish Government changes to Carers Allowance, and the digitisation of the Community Alarm system in North Lanarkshire.
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113 Campaigning In partnership with the Carer Positive Team at Carers Scotland, our service host two events each year identifying and encouraging local partners to become carer positive employers and recently campaigned in support of the private members bill to Westminster for statutory time off for those working alongside a caring role. As costs of living continued to increase, carers told us how difficult things were becoming for them. Their feedback combined with timely reports from national organisations led to our Cost-of-Living campaign focussing on the impacts on carers in North Lanarkshire. We published our findings, making recommendations to Health and Social Care North Lanarkshire early last year. These recommendations were met in full besides one for a cash-first payment to support families due to potential triggers of a benefits check that was advised by Social Security Scotland. Our most recent campaign was on carer breaks in North Lanarkshire. The topic was high on the local agenda, but one carers story brought to the attention of Health & Social Care prompted a wide-reaching consultation to ascertain carers experiences of sourcing information on and accessing a short break. The report concluded with recommendations on improving the landscape, with one key recommendation being that carers are involved in every future step looking to improve short breaks. A key piece of work we provide is our Carer Aware Programme - where we deliver information sessions to carers and partners, informing them of the Carers (Scotland) Act 2016, of carer rights, and where and how to access support and services for carers locally. Over the past year we have delivered twelve sessions to 175 participants, which includes six sessions to ninety front-line Health & Social Care staff. Partners and carers who take part continue to tell us the rich value the information brings and helps to improve outcomes for carers. Carer Breather One of the more significant carer-led developments over the last 2 years was the Carer Breather programme. Designed by carers from the offset through robust consultation on what types of short break would help most to allow them a local and regular breather from caring; the first round of services ending in March last year was a huge success. Evaluations proved successful with a published report now available. In our role as Carer Network Lead, we were delighted to have been entrusted for a further 2 years covering the period April 2023 – March 2025 to lead on new Carer Breather services. A fresh investment of £600,000 by Health & Social Care to our partnership with Community Solutions (VANL) meant that through a multi-agency panel which included carers, we were able to allocate this investment into organisations and community groups geographically spread across North Lanarkshire to provide local carer breaks. A key addition this time around includes better provision for parent carers of children with additional support needs. Services offering these supports include One Parent Families Scotland, Play Peace and Pamis. The organisations funded in this round are:
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114 Bazooka Arts Getting Better Together Shotts Glenboig Development Trust North Lanarkshire Disability Forum One Parent Families Scotland Pamis Parkinson’s Self-Help Group Airdrie Play Peace The Haven The Health and Wellness Hub Watch Us Grow Carer Breather is pioneering and has attracted national attention as a model of good practice in supporting carers and has been nominated for a national award. Advocacy North Lanarkshire Carers Together have one staff member providing an Independent Advocacy service for adult carers living in North Lanarkshire. Over the course of the last year, we have provided 1-to-1 advocacy to forty carers for a range of support needs. The carers ranged from aged eighteen up to carers in their seventy’s, carers who lived across the six localities in North Lanarkshire and who cared for people with mental health challenges, autism, learning and physical disabilities, and addiction. The type of help and support we have provided includes support with Self Directed Support packages, hospital discharge, housing, accessing respite or short break provision, and Power of Attorney. This service ensures that carers have full access to their rights as outlined within the Carers (Scotland) Act 2016. We know that health and social care systems can often be difficult to navigate, coupled with the fact that many people struggle to understand their rights as unpaid carers, and our service seeks to address those issues. Family Support Service Commissioned by North Lanarkshire Council Education & Families, our Family Support Service has grown this year with two full time staff now providing a whole- family support service since January. Support to families is community based, responsive, timely, and flexible whilst providing the opportunity for families to be listened to. The support can be emotional or practical, help to understand the child/young person’s diagnosis and needs, signposting to further services, and support that may benefit the family within the local community.
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115 The support is tailored to meet the needs of each individual family, and this is aligned with the Ten Principles of Intensive Family Support within The Promise as well as the child/young person’s Wellbeing Plan and is underpinned by Children’s Rights. Families able to access the service are those where there is a child/young person with: A neurodevelopmental profile Social communication difficulty Challenges with emotions Behavioural issues Other similar challenges There is no need for a diagnosis to access the service. It is a niche service with referrals only accepted via the young person’s school or for those children on the waiting list for a neurodevelopmental assessment, via the Neurodevelopmental Team. Over the course of this year, we have worked intensively with 227 families, ensuring parents/guardians are better informed and more able to cope with challenges they may have been facing and young people meet their own outcomes.
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116 Appendix 5 – Action for Children Young Carers Update NLYC has continued to complete Young Carer Statements, assessments, reviews, and referrals for the young carer service. This includes online referrals via www.northlanarkshireyoungcarers.org We have been very busy providing varied and extensive short breaks for our service users in line with the requirements of the Carers Act Scotland. In the last quarter we completed over 50 (1:1s) and 36 young carer Groups. (Within the service and the community) We continued to apply for short breaks funding from the Lanarkshire Carers Centre (Short Break bureau). In March alone the team at NLYC successfully applied for £3990. Through Action for Children, we continued to provide added value which allowed us to enhance the service environment and quality of outings. We have been involved in aspects of development of the Childrens Plan in NL as well as the Carers Strategy group in NL. We participated in young carers day 2024 and had a large article in the Daily Record online platform. We continued to develop new awareness materials for the public as well as updating our website and Facebook resources. We continue to work with several partners including: ASH, NLCT, Reel time studios, Landed, CAMHS, New College Lanarkshire, Lanarkshire Carers Centre, FAMS, H&W HUB. Partnership remains critical to the success of the service. We supported NLC on design of the new Carers Strategy document via several meetings and provision of statistics. Staff continued to provide Mental Health supports to young carers including access to professional counselling for the most effected young carers. The service continues to work in most High schools in NL. In quarter four we presented to over 1500 first year pupils, 50 staff and 105 children attended school drop ins. AfC (NLYC) Report for Committee
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117 We had some issues with our vehicle pool, with one vehicle being out of use for three months. We continued to have issues changing the electricity supplier for our new location in enterprise House. We had two staff leaving service, but this was covered by management. We have continued to work with Lanarkshire Carers Centre and the short breaks bureau to provide short breaks finance to service users and their families. In addition, we secured over £1k in respitality support from the Bureau for our families. We continue to work with Lanarkshire Carers Together, VANL, Education via high schools in North Lanarkshire and advocacy services. Our awareness presentations and drop-in sessions continue within the high schools in North Lanarkshire. (This is a major part of our work). This quarter we worked with ASH, NLCT, Reel time studios, Landed, CAMHS, New College Lanarkshire, FAMS. We worked with Outward bound) on a residential in April), Carers Trust, Coalition of Carers, we also worked with Cumbernauld ‘Lantern house’ Theatre, Flip-out, Innoflate (Cumbernauld), The Health and Wellness Hub (Motherwell), Motherwell and Airdrie Consortium, CYPF Network, CSN Network, NHS Lanarkshire, Carers Rights and Support Steering Group and VANL. Adults form North Lanarkshire Carers Together have used our podcast suite twice this quarter. We continue to work closely with Motherwell FC and the Charity Foundation and Ravenscraig sport venue. Many short breaks for carers have been provided. We have settled into our new premises which we continue to develop, and this has been viewed very positively by carers and families and other partners. Financially, we successfully applied for £25k of additional funding for 2024-25 to support mental health and Cumbernauld \ Kilsyth area. We now have 10 season tickets to Motherwell FC which are used by YC and families. Some recent stats: 16 cases closed this 4th quarter. 142 actual young carers with direct support Over 130 families \ siblings involved in some form with NLYC. Over 1500 school children received awareness training Together, VANL, Education via high schools in North Lanarkshire and advocacy services. Our awareness presentations and drop-in sessions continue within the high schools in North Lanarkshire. (This is a major part of our work). Recently we worked with ASH, NLCT, Reel time studios, Landed, CAMHS, New College Lanarkshire, FAMS. We worked with Outward bound) on a residential in April), Carers Trust, Coalition of Carers, we also worked with Cumbernauld ‘Lantern house’ Theatre, Flip-out, Innoflate (Cumbernauld), The Health and Wellness Hub (Motherwell), Motherwell and Airdrie Consortium, CYPF Network, CSN Network, NHS Lanarkshire, Carers Rights and Support Steering Group and VANL. Adults form North Lanarkshire Carers Together have used our podcast suite twice this quarter. We continue to work closely with Motherwell FC and the Charity Foundation and Ravenscraig sport venue. Many short breaks for carers have been provided. We have settled into our new premises which we continue to develop, and this has been viewed very positively by carers and families and other partners. Financially, we successfully applied for £25k of additional funding for 2024-25 to support mental health
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118 and Cumbernauld \ Kilsyth area. We now have 10 season tickets to Motherwell FC which are used by YC and families. This has been a very busy period for NLYC. We have continued to provide short breaks, complete Young Carer Statements, and provide advice and support to families. Added value remains a very important part of the service with budgets so tight. Partnership also remains critical, and we worked with a variety of carer partners, local businesses, national carer organisations and local sports facilities. We continued to work with the Motherwell FC community Trust providing sports sessions for our young carers. In March we had a large article in the Daily Record around carers day and one of our service users. This highlighted what the service means to him and his family. Young carers enjoyed trips to Wicked, The woman in Black, Flip-out, Innoflate, Café Ceramo, Golf, Bowling, Cinema, and local restaurants. We had 203 young carers attend a cinema event in Cumbernauld theatre recently. We have continued to develop our service to make it more short break friendly. Recently we fitted a pool, table, air hockey table and two retro gaming machines. We also have a darts board and invested in more PS5 games for young carers. We work directly with our service users and their families. We consult via meetings, on-line support, school support and through our secure Facebook page and website. We regularly phone our service users as well as using texting services. We use questionnaires and group \ individual feedback sessions as well as provide comments and suggestions platform within the service and on-line. In quarter four our YC were consulted on the new Carers Strategy document for BL, as well as by ASH Scotland (Vaping) and landed. We have had very positive feedback from service user families. As part of our review, we ask for feedback from families and parents as to the service provision. We also invite comments via Facebook. We have recently been involved in several electronic surveys around service user feedback via Action for Children and the carers Trust. This quarter we had a questionnaire on the new Carers Strategy document for NLC. In quarter four we introduced new Friday feedback sessions held in localities in NL and attended by young carers. (we used menti-meter)
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119 We are aware of the North Lanarkshire Health and Social Care partnership page on care opinion. We see it as a platform for the public to comment on service provision. We encourage parents to utilise the site, however as we are a children’s service our service users tend to communicate directly with us, and not via the site, we have had no young carer related comments placed on the site for North Lanarkshire. We will look to promote better use of the site for our families wishing to feedback on services moving forward. Action for Children is committed to ensuring our employees and workers are enabled to work in a safe way and protected from harm and safeguarding is integral to everything we do. Funds have been used in line with service level agreement. Action for Children have also supported the service with substantial Added value via: Herbalife, Covid Fund, William Grant Foundation. The service has also successfully applied for £20k of mental health funding recently and 3% to support young carers in the Cumbernauld locality. In quarter 4 we met with over 1500 school pupils in NL to give awareness training. We have been using facilities in Cumbernauld, Motherwell, and Wishaw. In quarter four we secured £5k of funding to support carers in Kilsyth and Cumbernauld locality, working with local companies to improve quality of life within the carer’s community.
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121 Direction from North Lanarkshire Integration Joint Board (IJB) 1 Reference Number 2 Report Title 3 Date direction issued by IJB 4 Date from which direction takes effect 5 Direction to: 6 Does this direction supersede, revise or revoke a previous direction – if yes, include reference number(s) 7 Functions covered by direction 8 Full text of direction 9 Budget allocated by Integration Joint Board to carry out direction 10 Performance Management / Governance arrangements 11 Date direction will be reviewed
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