ITEM 9 Improving Cancer Journey
North Lanarkshire Council · 21 August 2024
Back to IJB Performance, Finance and Audit Committee — 21 August 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: 9 SUBJECT: Improving the Cancer Journey TO: Integration Joint Board Performance Finance & Audit Committee Lead Officer for Report: Ross McGuffie, Chief Officer NL HSCP Author(s) of Report Morag Dendy, Chief Officer Planning, Performance and Quality Assurance DATE: 21 August 2024 1. PURPOSE OF REPORT 1.1 This paper is coming to the IJB for: For approval ☐ For endorsement ☐ To note ☒ 1.2 This paper provides an update on the Improving Cancer Journey service in North Lanarkshire. 2. ROUTE TO THE BOARD 2.1 This paper has been: Prepared By: Head of Planning, Performance and Quality Assurance Reviewed By: HSCP CORE team Endorsed By: Chief Officer Prepared By: ☒ Reviewed By: ☒ Endorsed By: ☒
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2 3. RECOMMENDATIONS 3.1 The IJB PFA Committee is asked to: (1) Note the progress in the provision of support for people with a cancer diagnosis and those affected by a diagnosis to improve the cancer journey for individuals, their carers, their families and friends. 4. VARIATIONS TO DIRECTIONS? 5. BACKGROUND/SUMMARY OF KEY ISSUES 5.1 In June 2021 the North Lanarkshire IJB endorsed Phase 1 of a two-part application to the fund to scope the local approach in partnership with VANL. In March 2023 Phase 2 of the application was approved supporting access to funding of £2m to improve the cancer journey across Lanarkshire, this paper offers an update of progress since the launch of the service in March 2024. 5.2 The Improving Cancer Journey (ICJ) approach aligned to Community Solutions, Improving Lives mobilising the community voice around cancer as well as wider long-term conditions to complement the national approach to inclusion, promote successful engagement with more deprived communities and facilitate volunteering models. 5.3 The Phase 2 Application outlined the resource provided by Macmillan, which was equivalent to employ 3.5 whole time equivalent staff, which was matched against the funding within the Improving Lives Initiative (ILI) of £412,800 to employ a combined team of 10 Community Connectors. This approach was designed to ensure everyone in North Lanarkshire diagnosed with cancer can easily access the support they need, when they need it to enable them to live as well and as independently as possible. 5.4 The service began with a small pilot with a specific cohort of people attending a post treatment lung cancer clinic. This pilot allowed for the testing of pathways and processes. Now referrals are accepted referrals for anyone affected by any cancer. Yes ☐ No ☒ N/A ☐
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3 5.5 The ICJ service in North Lanarkshire is based within North Lanarkshire Disability Forum and supports people diagnosed with cancer with their non-clinical needs utilising a holistic needs assessment discussing “what matters.” The service is supported by a central point of administration which triages and coordinates all referrals across the whole of Lanarkshire, thus creating a pan-Lanarkshire hub. The help people need is easily accessed through the hub or directly through the Disability Forum by making just one call or email or completing a single page online form. 5.6 The launch event, on the 20th March 2024 brought key stakeholders, staff and people using the services together to celebrate the service being fully staffed and operational. The event was kicked off by X- Factor star Nicholas McDonald before participants saw videos of a clinician reflecting on the cancer nurse specialist service and heard from one of patients and carers who have been going through the service. 5.7 Chris shared his experience at the launch event. Chris is currently going through the Improving the Cancer Journey. He said: “I would certainly recommend the service to anyone going through cancer treatment. From my first conversation with my link worker Natalie, I could tell she was a good person. She listened to everything I said and she was sympathetic and empathetic. I felt comfortable talking to her about my life and we quickly built up a rapport. I can’t speak highly enough about her dedication. She worked with my cancer nurse specialist regarding my housing and compiled reports for other organisations and further support. I’ve found the emotional support side of it is just as important, especially when I hadn’t told a lot of people about my cancer. Natalie is frequently in touch with me to let me know how things are progressing which means I’m not waiting on hearing updates. That takes away another layer of worry.” 5.8 The Community Connectors will have a meaningful conversation with the person affected by cancer, their carer or family member about what matters to them and then help them to gain access to or signpost them to appropriate support and resources already available in the local community. 5.9 When people affected by cancer access the ICJ, they will have a conversation about their needs and concerns. They will be offered a Holistic Needs Assessment (a conversation to understand what matters to the person) and based on this; an individual support plan will be developed to ensure people are offered all the support they need. This might be financial
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4 information about benefits they may be entitled to or addressing feelings of isolation and loneliness by signposting to community organisations. 5.10 The Improving the Cancer Journey Lanarkshire Quarterly Report April 2024- June 2024 is attached at appendix 1 5.11 Future reporting on the ICJ work will be incorporated into a broader report on the whole system work within communities, including the wider benefit of Community Connectors. 6. CONCLUSIONS This report captures the progress to date on establishing and realising the ICJ work in North Lanarkshire which is impacting positively on the lives of people with or affected by cancer. 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 ☒ Resources are used effectively and efficiently in the provision of Health and Social Care Services ☒ 7.2 ASSOCIATED MEASURE(S) 7.2.1 Quarterly and annual monitoring arrangements are in place to demonstrate key outputs and outcomes.
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5 7.3 FINANCIAL The funding profile is detailed in the report to the IJB in March 2023 This paper has been reviewed by Finance: The work of the ICJ is supported by clear governance arrangements both Pan Lanarkshire and North Lanarkshire specific, this includes the governance of financial commitment and spend which remains on the agreed trajectory. 7.4 RISK ASSESSMENT/RISK MANAGEMENT Relevant Risk Register Details Current Risk Level Risk Owner The investment opportunity is non- recurring for a fixed period of five years overall but a 2-year period in relation to Phase 2. It was therefore deemed essential that the funding opportunity enhances already embedded approaches which will be sustained into the future. Low Head of Planning Performance and Quality Assurance 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 Yes ☐ No ☐ N/A ☒
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6 ☒ Involve stakeholders in the development work aimed at achieving the national outcomes The impact on people affected by a cancer diagnosis and their carers will be monitored throughout the duration of the ICJ approach. ☒ Provide stakeholders with information on how to get involved Information about the service and being involved is circulated widely and in multiple formats ☒ Ensure a diverse range of engagement and participation and opportunities are in place to suit different needs Equalities monitoring forms a key component of the overall approach ☒ Measure how well we involve community stakeholders in the planning, design and delivery of our services The model has been introduced through testing and experimenting through the 2 phase funding agreement ☐ Provide regular feedback on how stakeholder engagement and participation is shaping and influencing service development and delivery ☐ Provide support to enable stakeholder representatives to participate meaningfully and confidently at meetings ☐ Develop participation guidelines to ensure a common understanding and set of expectations for both stakeholders and partnership staff ☐ Support engagement planning and participation in localities, taking account of other engagement activity and local plans across the Community Planning Partnership 7.6 INEQUALITIES & FAIRER SCOTLAND DUTY 7.6.1 The Cancer Research UK Screening Inequalities Report Deprivation and Cancer Inequalities in Scotland was presented to the IJB PFA on the 14 February 2023 The report highlights the significant impact of deprivation on cancer incidence, diagnosis and outcomes. With NHS Lanarkshire identified as the third most deprived Health Board in Scotland, the findings of the report are highly concerning. 7.6.2 Cancer incidence is 33% higher in the most deprived populations in Scotland in comparison to the least deprived areas. It is estimated there are around 4,900 extra cancer cases every year in Scotland attributable to deprivation, with lung cancer contributing nearly half of these.
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7 7.6.3 Further that cancer mortality is 74% higher in the most deprived population compared to the least deprived. This gap has narrowed slightly since the Covid- 19 pandemic, which may relate to people from more deprived areas being more likely to die from Covid-19. 7.6.4 The report notes that barriers to seeking help are more likely to exist for those living in more deprived communities. A range of difficulties such as getting access to an appointment, getting an appointment at a convenient time, being able to discuss health problems remotely, confidence to talk about symptoms or thinking symptoms were related to an existing condition are all significantly more prevalent in those from the most deprived communities (particularly around being able to access appointments with health professionals). 7.6.5 This development and Phase 2 of the funding application seeks to improve access to help, advice and support across the localities of North Lanarkshire and target resources at those experiencing the highest inequality. EQIA Completed & Fairer Scotland Impact Assessment Form Completed and attached to report: EQIA added to website: 8. BACKGROUND PAPERS None. 9. APPENDICES Appendix 1 Improving the Cancer Journey Lanarkshire Quarter Report Yes ☐ No ☐ N/A ☒ Yes / Date added ☐ No ☐ N/A ☒
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8 Morag Dendy CHIEF ACCOUNTABLE OFFICER (or Depute) Members seeking further information about any aspect of this report, please contact Morag Dendy at dendym@northlan.gov.uk
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9 Direction from North Lanarkshire Integration Joint Board (IJB) 1 Reference Number 2024/2108-09 2 Report Title Improving Cancer Journey 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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10 Appendix 1 Improving the Cancer Journey Lanarkshire Quarter Report April 2024-June 2024 Donna Bruce Macmillan Programme Manager
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11 1.Breakdown of Referrals to ICJ Service 1.1 Total Referrals and Referral Type A total of 412 referrals to the ICJ service were received between April 2024 – June 2024. The month with the highest number of referrals was April (141 referrals, 34%) this increase could be a result of the official launch taking place in March. This continues to show a steady increase from last quarter (341 total referrals). The most common referral type in this period was clinical (78%). Amongst the clinical referrals Cancer nurse specialists account for 60% of those referrals followed by the cancer navigators (28%).
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12 1.2 Total Referrals by Locality
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13 1.3 Total Referrals by Gender Below is the breakdown of ICJ referrals by gender. More referrals were made for women (58%) than men (38%). 1.4 Pathway Stage The most common pathway stage for referrals to the service was at initial diagnosis (28%) and palliative/transitioning to palliative care (38%)
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14 1.5 Cancer Type The most common cancer type was lung cancer (25%). Followed by breast (17%). 1.6 Referral by SIMd In the last 3 months from the 412 referrals there were 14 referrals that come from the top 5% areas of deprivation and 47 from the top 10% the 47 includes the 15 from the 5%. 1.7 Declined Referrals 7 out of a total 421 referrals were declined by the person. Below are the reasons given for declining the ICJ service. The most common reason for declining the service was the support was not required at that time (57%).
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15 Activity 2.1 ICJ Tasks Below is a summary of the ICJ tasks completed during the period. 4217 total tasks were completed. This is a 27% increase in activity since last quarter. 2.2 Total Onward Referrals 241 onward referrals were made to other services.
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16 Below is a summary of the most common organisation’s onward referrals were made to. Maggie’s and Money advice services remain our largest referrals. 3. Holistic Needs Assessment 3.1 Clients are offered the choice of where they would prefer the assessment to be carried out. Last quarter half the clients preferred initial assessment to be carried out in their own home. 37% of clients chose to meet in a community setting while only 5% requested telephone.
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17 3.2 The table below outline’s the main concerns identified by people on assessment. Finances remains’ our top concern. 3.3 Concerns are grouped into our 5 key areas of wellbeing. The below table outlines the number of referrals received for each. Clinic 5% Community 37% Home 51% Paper 2% Telephone 5% Setting 69 59 61 106 89 66 57 86 57 58 64 0 20 40 60 80 100 120 Complementary therapies Eating, appetite or taste Health and wellbeing Money or finance Moving around (walking) Pain or discomfort Patient or carer's support groups Tired, exhausted or fatigued Transport or parking Uncertainty Worry, fear or anxiety Top 10 Concern Types
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18 426 157 955 695 20 52 0 200 400 600 800 1000 1200 Emotional concerns Family concerns Physical concerns Practical concerns Religious and Spiritual concerns (blank) Total Referrals by Concern Type
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3. Experience Survey Results An experience survey was issued by link workers to people supported through the service. Six responses were received, with the following results. How would you rate the service you received from the Improving Cancer Journey Team? The ICJ service and my wellbeing practitioner made me feel better supported. The ICJ service has connected me with appropriate services to support my concerns. If no, which concerns have not been addressed? The ICJ service has made me feel more able to manage my condition. The support I received through the ICJ service was at the right time. The support I received through the ICJ service was the right frequency of contact. If no, how could this support have been improved? Is there anything else about your experience you would like to share? Excellent Yes Yes Somewhat Yes Yes Very friendly team, who kept and regular, called when they advised they would. Excellent Yes Yes No Yes Yes "quite happy with Tom" Tom is the only person out of all the agencies that I trust Excellent Yes Yes Yes Somewhat Yes Not at this time
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Spoke to sister on behalf of F Excellent Yes Yes Yes Yes Yes Excellent Yes Yes Yes Yes Yes Natalie has been a real help, Natalie has reassured me, Natalie got me a blue badge Excellent Yes Yes Somewhat Yes Yes Very friendly team, who kept and regular, called when they advised they would.
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4. Case Studies Case Study A Abstract (provide a brief summary describing your case study: 120 words max.) NM was referred to Macmillan improving the cancer journey service by a clinical nurse specialist. NM was diagnosed with Renal cancer with multiple lung, bone, lymph node and pelvic metastatic tumors, she is a young mum with 2 very young children. Background (what were the problems you tried to resolve? Why did it happen?) NM was contacted by Macmillan ICJ community connector to discuss concerns with NM about herself and her children. NM spoke about their concerns while the practitioner completed an online holistic needs assessment over the telephone, The conversation and Holistic assessment identified that NM is now receiving palliative care and worried that she won’t be able to cope with the treatment or benefit from it, she shared that she is also anxious that this will impact on her role as a mum. NM confided that they are also concerned that their children being so young won’t remember her. NM went on to say that she is currently in a lot of pain and exhausted due to her diagnosis and the side effects of her treatment. NM continued to say that even although she knows her prognosis she is determined to stay positive and continue her role as a mum as best as she can. Action (what did you do and how?) Macmillan ICJ community connector made a referral to The Haven to allow NM some complimentary therapies that would help with her wish to continue looking after her children as best she can. She was also referred to a Children’s and Young adults support group with the same organisation to allow her kids to attend groups and sessions.
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Result (what has the improvement been, what impact has it had and how do you know this?) Macmillan ICJ community connector continues to follow up with NM on a weekly basis. She has confirmed that The Haven practitioners have been telephoning and organising sessions for her and the children which she shared she is happy with. Learning Lessons (what lessons can you share with others trying to do this? How translatable is this idea to other areas?) I have learned that the cancer journey is different for everyone, it can be affected by our environment, the people around us for support, family, past experiences, and what stage of cancer we have, it has made me aware how we need to be more vigilant to changes in our body no matter what our age. Case Study B Abstract (provide a brief summary describing your case study: 120 words max.) Mr. T diagnosed with Lung/Liver cancer & Parkinsons disease faced significant challenges in maintaining his independence due to mobility and bending issues, His sister approached our MacMillan cancer stand at Monklands seeking assistance to improve his quality of life. Mr. T health conditions not only affecting his physical abilities but also took a toll on his emotional well-being. Despite his resilience he struggled with daily tasks and did not feel comfortable relying on others for assistance. Background (what were the problems you tried to resolve? Why did it happen?) During the writer’s first interaction with Mr. T at his home, it’s worth noting that initially his unwavering pride was shining through as he initially declined offers of funding etc. He shared his desire for independence and highlighted a need for a simple grabber tool which would help him pick up from the floor and a telescopic ramp to facilitate loading his scooter into his car. These items would enable him to pick up clothes, and other objects. The ramp would enable him to continue driving
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independently. In turn he could attend appointments and engage in social activities without relying on others. Action (what did you do and how?) Sourced a telescopic grabber “a simple tool” to help pick items from low level. Referral to Well-Being Group at Outpatients St Andrews. Accompany him on his first visit to outpatients & chat with staff. Attempted to source the Telescopic ramp as an assistive equipment but faced challenges. Recognising the importance of enhancing his independence and what matters to him I tried to secure funding for the ramp. Result (what has been the improvement, what impact has it had and how do you know this?) Recognising the importance of enhancing his independence and what matters to him The writer was successful in obtaining a telescopic Grabber device, which he confirms has been useful and enhanced his independence. He has also started his Tuesday well-being group independently and enjoys all aspects of the group. Mr T newfound independence positively impacted his overall well-being, fostering a sense of empowerment and control over his life despite his health challenges. He has expressed his gratitude and confirms a significant improvement in his independence. He also self-purchased a telescopic ramp so he could attend the well- being group independently in his own car. He can now load his scooter into his car allowing him to travel to the outpatients at St Andrew’s. He is running errands and participating in social activities with confidence and autonomy. Mr. T updates the writer on his newfound sense of freedom and self-sufficiency. He now needs my help with developing a “Traffic Light” system weekly planner! Learning Lessons (what lessons can you share with others trying to do this? How translatable is this idea to other areas?) Mr. T’s story highlights the importance of addressing the unique individual needs/wants of our clients facing complex health conditions. It was also a beautiful reminder that our main objective should be to promote independence and focus on
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what matters to the client. By doing this we can significantly improve the quality of life and individuals like Mr. T, enabling them to live with dignity and autonomy. Breaking through Mr. T unwavering pride required a delicate approach –listening and validating his feelings, empathy & rapport building recognising the significance of his pride. When facing a challenge with the referral route for well-being group, by rallying together as a wider team like we did, we can make significant difference in the lives of those like Mr. T. Financial constraints, Despite the apparent need, Mr. T was not eligible for grants because he had been diligently saving neither was the simple modification available from other sources. Case study C Abstract (provide a brief summary describing your case study: 120 words max.) Mrs X was referred by the lung cancer navigator. Mrs X was at home and not for treatment but for best palliative care. Mrs X was very anxious and upset at her diagnosis and worried about how she would cope. The wellbeing practitioner supported Mrs x with two home visits, phone calls and a community visit. The connections made meant physical, emotional and information outcomes improved. The support was carried out over a 3 month period. Background (what were the problems you tried to resolve? Why did it happen?) Mrs X felt isolated and did not know where to turn. During the holistic conversation and assessment, it was apparent that Mrs X was likely not receiving full benefits, did not have mobility aids or a blue badge and had previously benefited from complementary therapy. Mrs X did not have much of an appetite and was not eating much. Mrs X was also worried about what would happen to her cat. Action (what did you do and how?) The wellbeing practitioner: Made a referral to money matters. Passed Mrs X details to Macmillan volunteer complementary therapist.
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Completed a blue badge application. Made a referral to Occupational therapy. Provided Macmillan information on the Building up diet Made a referral to Morphfit gentle movement programme Provided information on SPCA forever care service. At a later date: Contacted DWP to inform them that Mrs X was in hospital. Result (what has been the improvement, what impact has it had and how do you know this?) During follow up calls with Mrs X, the wellbeing practitioner was advised that she received full attendance allowance which allowed her to use taxis more to get out. She received a blue badge which helped when her friend and daughter would take her to the shops. She received complementary therapy at the library which she enjoyed and helped manage her anxiety. Mrs X received mobility aids to make her safe at home and a wheelchair to allow her to get out for longer and to different places with her daughter. Unfortunately Mrs X did not manage to take part in the exercise programme due to her health deteriorating and a family friend took her cat but the information helped her anxiety around what would happen. Learning Lessons (what lessons can you share with others trying to do this? How translatable is this idea to other areas?) The services I referred to were all in touch quite quickly so it was a lot of calls and information at the same time, possibly staggering referrals thinking about priorities to prevent this would be preferable for someone so anxious. Mrs X and her daughter did not know a lot of these services were available and would never have applied for benefits or a blue badge without the support of ICJ so it emphasises the importance of the service.