Contents Introduction Context nationally and locally What is a health and wellbeing event?... 4

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1 Living With and Beyond Cancer Merseyside and Cheshire Health and Wellbeing Clinic Event Guidance January 2017 Contents 1 1. Introduction Context nationally and locally What is a health and wellbeing event? Rationale for implementation Health and wellbeing event development NCSI to Macmillan Content of health and wellbeing events Developing a directory of services 9 8. Who should receive a health and wellbeing event? Progress with developing health and wellbeing events across LWBC M&C LWBC contact for support and planning References to be finalised Appendix A Ten things that matter to patients: What great care looks like example Appendix B Macmillan Cancer Support to identify top tips for patients: 13 Appendix C LWBC Patient Charter. 14 Appendix D Other considerations in the development process. 15 Appendix E Evaluation. 16 1

2 1. Introduction In 2010 across Merseyside and Cheshire there were approximately 71,500 individuals who had been diagnosed living with and beyond cancer. The number of cancer cases in Merseyside and Cheshire is increasing per year so the total figure will rise to just over by In July 2015, the independent Cancer Taskforce published their strategy setting out how we in England could achieve the very best cancer outcomes by It was universally welcomed and backed by the health Arms-Length Bodies, the Government and the wider health community. The strategy is comprehensive in showing how we can achieve: fewer people getting preventable cancers more people surviving for longer after a diagnosis, with 57% of patients surviving ten years or more more people having a positive experience of care and support; and, more people having a better long-term quality of life. The Living With and Beyond Cancer programme in Merseyside and Cheshire is supporting partner trusts to implement health and wellbeing clinic events as part of the Recovery Package. The aim of this document is to provide information and guidance on the development and implementation of health and wellbeing clinic events in order to embed them within cancer pathways and to improve patient outcomes and experience. It is recommended to read the following documents in association with this guidance: The Recovery Package: sharing good practice MAC15514 Health and Wellbeing Clinics and Events: Sharing good Practice Macmillan Cancer Support 2014 MAC15174 Living With and Beyond Cancer: Taking Action to Improve Outcomes Innovation to implementation: Stratified pathways of care for people living with or beyond cancer A how to guide MAC14481 Implementing the Cancer Taskforce Recommendations: Commissioning person centred care for people affected by cancer April 2016 Evidence shows that as many as 25% of individuals living with or beyond cancer have unmet physical or psychological needs - whilst others are experiencing difficulties living with the consequences of treatment that could either be avoided or minimised. Therefore, it is essential that we change the way in which we support individuals living after a cancer diagnosis to address these unmet needs and to meet the growing demands on NHS and social services as cancer incidence increases. 2

3 2. Context nationally and locally Everyone who gets cancer is different. And the care and support they will need to live with a cancer diagnosis in a way that makes sense for their own life, particularly after treatment has finished, will be different. The Cancer Taskforce called for an acceleration of the commissioning and provision of services to support people affected by cancer to live as healthy and as happy lives as possible. Over the last few years, NHS England has been working with Macmillan Cancer Support to roll out the Recovery Package, built upon the work of the National Cancer Survivorship Initiative 2013, which describes a set of actions that ensure that the individual needs of all people going through cancer treatment and beyond are met by tailored support and services. By working through a Recovery Package, patients and clinicians assess patients holistic needs and plan appropriately for their care and support, they ensure that a treatment summary is sent between a patient s hospital and their GP, that they are appropriately followed up by their GP, and can attend health and wellbeing events for patients and carers. The recovery package is a combination of interventions which, when delivered together, greatly improves the outcomes and co-ordination of care for people living with and beyond cancer. Further information and resources can be found at: s/recoverypackage/recoverypackage.aspx 3

4 The recovery package consists of 4 key elements: Holistic Needs Assessment - with copies provided to both the patient and GP Treatment Summary - with copies provided to both the patient and GP Cancer Care Review -conducted by GPs within 6 months of them receiving notification of the individual being diagnosed with cancer A health and wellbeing event educational clinical events at end of treatment which support individuals to self-manage their condition. Participation in these events empowers people living with cancer (and their families) to actively participate in their recovery, giving them necessary information to promote and maintain positive lifestyle changes In addition, NCSI recommended embedding stratified follow-up within cancer pathways. Stratified follow-up is an approach to steering individuals who have received their treatment onto the best pathway to address their specific clinical and individual needs. It has a focus on promoting wellbeing, recovery, and empowerment - and providing individuals with the information and confidence to have an active role in their recovery. The overall aims of stratified follow-up are to improve patient experience and the quality and effectiveness of care by tailoring aftercare and integrating supported self-management within the pathway. The 5-year commissioning Strategy (NHS England, 2014) prioritised implementation of the recovery package and stratified pathways to improve the care and support for those living beyond cancer. The Living With and Beyond Cancer programme is working collaboratively with pathway boards and trusts to implement the recovery package and stratified follow up. Living With and Beyond Cancer Merseyside and Cheshire is committed to improving the support mechanisms for individuals living with and beyond a cancer diagnosis. The primary aim of the Board is to action a transition from the current clinician-led and largely hospital-based model of care to the development of a collaborative model which recognises people as experts in their condition and focuses on recovery, health and well-being. This includes providing support to plan and implement interventions such as the health and wellbeing event. 3. What is a health and wellbeing event? Health and wellbeing events are patient education and support sessions (group or 1:1 clinic appointment) that provide individuals with the information and confidence they require to enable them to lead as normal and active life as possible after their cancer treatment. 4

5 4. Rationale for implementation The National Cancer Survivorship Initiative piloted the introduction and evaluation of 14 Health and Wellbeing clinics for individuals with cancer between 2010 to March The pilots tested a range of models; tailored to the specific needs of the patient group. The evaluation found that the clinics enhanced quality of care, improved patient reported outcomes and reduced patients use of health services. Further information on Health and Wellbeing clinics and the evaluations can be found in Health and Wellbeing Clinics and Events: Sharing good Practice Macmillan Other key findings from the NCSI evaluation include: There was improvement to quality of life in terms of increased self-reported ability to manage emotional distress and participation in social activities There was improvement to patient-reported physical wellbeing. Individuals benefitted from advice on diet and exercise and referrals to physiotherapy/dietetic services, as well as receiving information about side effects (which led some patients to change medication, with positive effects) A reduction in patients self-reported use of health services was evident following attendance at a clinic, particularly use of GP and district nursing services The major expense in delivering the clinics is staff time, which varies according to the model adopted The informal atmosphere of the clinics enhanced the delivery of health and wellbeing information The clinics may work well earlier in the pathway The clinics had a significant reassuring role. Individuals reported that they felt better knowing what services are open to them and how to access these Participants valued the group discussions - this assisted to alleviate isolation and confirm what is normal to experience and feel for a person who has been diagnosed with cancer. Referral and attendance is supported through engagement of the MDT, systematic referral processes and dedicated administrative time Components of the pilot sites that resulted in more effective provision: Referral and attendance is supported through engagement of the MDT, standardised referral processes and dedicated administrative time. Incorporation of market stalls into the day with a focus on wellbeing. Involving volunteers in the event. Participants especially valued hearing about personal cancer experiences. Close working with local community groups to encourage involvement of vulnerable groups, therefore maximising reach of the events. Ensuring continued support for patients. For example, offering them the opportunity to attend subsequent events as needed. 5

6 5. Health and wellbeing event development NCSI to Macmillan The format of health and wellbeing events at trust level will depend on a variety of local and tumour pathway factors. The structure and content should be considered within the wider context of provision of interventions/programmes for individuals with other long term conditions within the locale. It is recommended that NHS England (specialist commissioning as appropriate) and local CCGs and Health and Wellbeing Boards are engaged early in the process of planning. Local CCGs may already have health and wellbeing events in place for other long term conditions, so there may be opportunities to co-deliver events for cancer patients (with bolt-on modules for tumour specific information, for example). CCGs may have a view on the style of event that would support their local population. It would also be useful to liaise with local authorities as they have a role in health and wellbeing due to their public health responsibilities. One of the first steps in the development of health and wellbeing support is identifying the intended audience. The NCSI advises delivering events which either have a generic focus or are tumour/treatment specific. A description of the options is as follows: Generic, covering topics those are relevant to a number of tumour sites. For instance nutrition, physical activity, returning to work, finance and emotional resilience. Tumour specific to impart information particular to the specialism. For example, information regarding stoma care after colorectal cancer, or bone health after breast cancer. Subgroup specific to convey messages to a particular subgroup. For example, information specific to particular treatments in order to provide information on side effects or consequences of treatment. For example maintaining a healthy lifestyle whilst on ongoing hormone treatments. Other considerations in the development process: Appendix D There are mixed approaches to the delivery of health and wellbeing events. They may be delivered as one or more of the following configurations: 1:1 appointments conducted with individuals at the end of treatment Rolling programmes such as 6-weekly Macmillan HOPE events/courses. Group events which are scheduled at regular intervals throughout the year and which individuals may have an open invitation to attend if they choose to do so. Essentially, these are multidisciplinary meetings for patients and give opportunity for interaction between patients and carers, clinicians, clinical nurse specialists, allied health professionals, and complementary therapists. These might also include market stalls of local health promotion services or voluntary agencies. Providing more than one type of health and wellbeing model is advantageous as it provides patients and carers with a choice to engage in the format which best meets their needs. 6

7 6. Content of health and wellbeing events Health and wellbeing events provide an opportunity to inform and educate patients about the clinical and holistic aspects and the ongoing management of their health. They also serve to impart information about local facilities, supportive care and opportunities that are available to individuals and their families. Based on findings obtained from the national health and wellbeing clinic pilot sites in and the Ten Things that Matter to our Patients (Appendix A) - London Cancer recommends that the core and optional content of health and wellbeing events is as follows: 6.1 Core content Expert advice on health promotion - to minimise risk of recurrence and support healthy living. i.e. being physically active, nutrition, healthy weight management, smoking cessation. To include information/support to effect behavioural change. Support to ensure that individuals have the confidence and skills to manage their condition themselves i.e. referral onward to rehabilitation and psychological support services as appropriate and signposting to local support groups or buddying services. Information about complementary therapies - how these therapies may help to facilitate wellbeing. Advice on adjusting to life after treatment addressing fears of cancer recurrence. Information on signs and symptoms of recurrence and potential consequences of treatment. All events should clearly convey and reinforce the methods to activate fast-track access back into the system if there are any concerns regarding new symptoms or recurrent disease. Information and access to financial and benefits advice. Specific issues relevant to the individual s type of cancer. For example colostomy care, prosthetic care, early detection and management of lymphoedema, body image & sexual functioning. Vocational rehabilitation access to services for patients, information patients and carers can share with their employers. Management of symptoms. For example fatigue or physical discomfort. 6.2 Optional content Access to complementary therapies Mindfulness 6.3 HEALTH AND WELLBEING EVENT SERVICE SPECIFICATION AND EXAMPLES (Implementing the Cancer Taskforce Recommendations 2016) A HEALTH AND WELLBEING EVENT SHOULD INCLUDE: Expert advice on health promotion To minimise risk of recurrence and support healthy living particularly physical activity, nutrition and healthy weight management, smoking cessation. To include information/support to effect behavioural change. Support to ensure that individuals have the confidence and skills to manage their condition themselves For example referral onward to rehabilitation and psychological support services as appropriate and signposting to local support groups, voluntary sector organisations or buddying services. Information about complementary therapies How these therapies may help to facilitate wellbeing. 7

8 Advice on adjusting to life after treatment Addressing fears of cancer recurrence. Information on signs and symptoms of recurrence and potential consequences of treatment All events should clearly convey and reinforce the methods to activate fast-track access back into the system if there are any concerns regarding new symptoms or recurrent disease. Information and access to financial and benefits advice Specific issues relevant to the individual s type of cancer For example: communication difficulties, dysphagia, colostomy care, prosthetic care, early detection and management of lymphoedema, body image and sexual functioning. Work support / vocational rehabilitation Access to services for patients including work support and information that patients and carers can share with their employers. Management of symptoms For example fatigue or physical discomfort. THE FOLLOWING EXAMPLES OF HEALTH AND WELLBEING EVENTS CAN BE USED AND ADAPTED LOCALLY: Example 1 London Cancer (LC) has developed information and guidance on the development and implementation of health and wellbeing events in order to embed them within cancer pathways: Health and Wellbeing Events Specification. Example 2 Ashford and St. Peter s Hospitals NHS Foundation Trust (ASPH) held their first health and wellbeing event in February The programme consisted of a range of expert speakers from clinicians and psychologist to dietitians as well as presentations on more practical issues such as seeking financial benefits, carers support, medical coaching and advice on physical activity for cancer patients. Exhibition stands supported by 14 cancer charities were included to ensure patients and their families and carers are provided and supported with additional information and guidance. A video was produced showing highlights of the day. Example 3 Brighton and Hove CCG has commissioned Albion in the Community to run Brighter Outlook a free, personalised physical activity programme for people living with and beyond cancer in Brighton and Hove. 8

9 7. Developing a directory of services Knowing what resources are available to patients and how to access them is important for all those involved. The key support services identified to support the care pathways can be found on the tumour specific pathways (see reference Innovation to implementation: Stratified pathways of care for people living with or beyond cancer A how to guide ). As a general rule these should include advice on: Benefits Social care Employment Rehabilitation services Lymphoedema Physical activity schemes Diet and nutrition Financial advice Psychological support Sexual dysfunction Continence services Complementary therapies Support groups Support programmes and information days TOP TIP Seek help from your Macmillan Cancer information centre to help compile the directory and ensure contact details are kept up to date. Seek advice from patient support groups on local information and contacts they think should also be included in the directory. Contact the local authority who is required to keep a list of the local authority services available. This may save you a lot of time. The directory should be readily available to all those involved in assessing and supporting patient needs. Patients should be provided with details of the services that they can access direct. 9

10 8. Who should receive a health and wellbeing event? Every individual with cancer should be offered the opportunity to attend a health and wellbeing event at the end of treatment: it is an integral part of the cancer pathway. Evidence from the national pilot project revealed that the events were well received by patients. The main reasons cited for non-attendance at the clinics were practical rather than objections to the format or content. For example, patients cited feeling unwell on the day, or having too many other appointments to attend at the time that a clinic was being held. The individualised needs of the patient will determine the type of health and wellbeing event most appropriate for them. Some may prefer or require a 1:1 session whilst others prefer the group format. It is also recommended that health and wellbeing support be made available to carers as it is essential that their need for information, advice and support are addressed. Palin et al (2011) demonstrated that carers and family members experienced multiple benefits from attending health and wellbeing clinics. These benefits include peer support, empowerment, and signposting to relevant services. 9. Health and Wellbeing clinic events across Merseyside and Cheshire In December 2015, the Living with and Beyond Cancer Macmillan Programme Officer, surveyed the provision of health and wellbeing events being delivered at our local trusts. The results revealed that: 1 of our hospital sites were active with their own established community based health and wellbeing event 2 of the hospital sites where actively in the process of planning future HWB events Remaining sites were not actively planning for health and wellbeing events within 6 months although some had held HWB events in the past. This information highlights the need for an area wide network to develop and provide support for patients across the area 10. LWBC contact for support and planning The Living with and Beyond Cancer programme in Merseyside and Cheshire have a Macmillan Programme Officer working on Health Wellbeing and Physical Activity; supporting partner trusts to plan, implement and set up a network group for health and wellbeing events as part of the LWBC programme and the Macmillan Recovery Package Michael Clinton Macmillan Programme Officer LWBC Michael.Clinton1@nhs.net 10

11 Reference and Reading List: Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, Br J Cancer : Department of Health, Macmillan Cancer Support & NHS Improvement. Living with and Beyond Cancer: Taking action to improve outcomes (an update to the 2010 The National Cancer Survivorship Initiative Vision) Palin, J., Ryrie, R., Smith, l., Khanna,M.,Pralat, R. Evaluation of Health and Wellbeing Clinics: final report NHS England. Five year commissioning strategy for London National Cancer Survivorship Initiative. Tips for setting up a Health and Wellbeing Clinic. National Cancer Survivorship Initiative. [Online] [Cited: 16 November 2014.] NCSI. National Cancer Survivorship Initiative. [Online] [Cited: 14 November 2014.] Learning what high quality compassionate care means for cancer patients and translating that into practice. McKenzie, F. Joel, K. Williams, C. and Pritchard-Jones, K. 2, s.l. : Patient Experience Journal, 2014, Vol. 1. Independent Cancer Taskforce, Achieving World-class Cancer Outcomes: A Strategy for England , NHS England, Five Year Forward View, NCSI, Living with and Beyond Cancer: Taking Action to Improve Outcomes, NHS England, Personalised care and support planning handbook: The journey to person centred care, NHS England, Guidance on delivering personalised care and support planning: The journey to person-centred care, NHS England, NHS Standard Contract, 2015/16. NHS England, Commissioning for Quality and Innovation (CQUIN): Guidance, 2015/16. General Medical Services (GMS) contract Quality and Outcomes Framework (QOF) Guidance for GMS contract. NHS England, CCG Outcomes Indicator Set, 2015/16. NHS England, Commissioning for Value: Integrated Care Pathways on a Page packs and Integrated Care Pathways, 2014/15. London Cancer: Health and Wellbeing Event Implementation Guidance, Macmillan Cancer Support: Health and Wellbeing Clinics and Events,

12 Appendix A: Ten things that matter to patients: What great care looks like? In 2010, during the early phase of the formation of London Cancer, UCLPartners (a partnership of health care providers and universities in North Central London), began a collaboration with local commissioners that aimed to think about cancer care and diagnosis differently, in order to improve patient experience and outcomes. Recognising that good patient experience can only be delivered by putting patients first and working together along the journey from symptoms to recovery, a focus was placed on understanding what mattered most to patients, organising how this could be achieved, and how London Cancer could measure success around this. Co-designed by conversations and contributions from 1,000 clinicians and over 200 patients within London Cancer s footprint within North Central London and West Essex, the Ten Things that Matter to Patients were identified. Outlined below, these have been, and remain, a cornerstone in the continuing work of London Cancer. 1) Early Diagnosis: Patients are diagnosed at an earlier stage 2) Ethos: Patients are treated holistically as individuals, and with dignity, sensitivity and respect 3) Communications: Written and verbal information about diagnosis, all treatment options including side effects and quality of life implications 4) Choice: Patients/ carers fully involved in choice of hospital and treatment options 5) Supports: Support groups, benefit entitlement, offered emotional/psychosocial support, information about complementary therapies 6) Carers: Fully involved and supported throughout pathway 7) Holistic Assessment: At appropriate stages throughout the pathway, with action as a result to meet their needs 8) Seamless Care: All patients assigned a CNS when diagnosed and community keyworker on discharge 9) Transport: Patients given information on hospital parking and costs 10) Discharge: Patients and GP provided with discharge information and follow up advice. 12

13 Appendix B Macmillan Cancer Support to identify top tips for patients: 1. Discuss your needs with a healthcare professional at the end of treatment 2. See a copy of your end-of-treatment assessment and care plan 3. Find out who is your ongoing main contact 4. Be aware of any post-treatment symptoms 5. Get support with day-to-day concerns 6. Talk about how you feel 7. Take steps towards healthier living 8. Find out more about what to lookout for if you are worried about treatment side effects or the cancer coming back 9. Monitor your own health and go to your follow up appointments 10. Make suggestions based on your experiences of treatment and care What to do after cancer treatment ends 10 top tips Macmillan Cancer Support, December nd edition. MAC

14 Appendix C: Living With and Beyond Cancer Patient Charter LWBC Patient Charter At the end of my treatment, I will make a care plan with my health care professional, which will include details of the follow up that I can expect My GP, and all those involved in my care, will be kept informed about my cancer and treatment I will receive information and education to enable me to manage my own care and stay independent I will be able to access specialist care and rehabilitation services when I need them, without delay I will have access to financial advice to help me manage the cost of cancer My family and those who care for me will be supported 14

15 Appendix D: Other considerations in the development process: What existing health and wellbeing structures are in place? Who will provide the training? Health professionals and/or volunteers? Will it be delivered in-house or by an external organisation? Or both? What are the likely training needs of those involved in planning and delivering the event? How do you manage patient expectations? Ensure that participants will understand what will be available at the clinic, particularly if the focus is tumour specific. Who will manage and run the clinic or event? Who will provide administrative support? Where will the clinic or event be held? Consider logistics, diversity of the audience in a particular area, parking, participants with special requirements, length of the clinic - will refreshments be provided? How will you evaluate the event? How will you signpost to further sources of support? Consider speakers or information stalls from relevant local support groups how will costs for the events be covered? Consider options such as within existing budget, charitable organisations, CCG etc. 15

16 Appendix E: Patient support evaluation form Health and Wellbeing Events Clinics 2017 (resize to font 12 minimum to fit 3 pages) Part of attending the event today is to make sure you are receiving all the support we can offer by completing; the first set of questions 1. At registration this will tell us your details and any concerns you may have. Completing the second set of questions 2. at the end of the event will tell us if your concerns have been addressed today. If possible we would also like to contact you in 12 weeks time to complete a third set of questions. This will help us identify if you have had the support required and if you have made any changes based on your condition. May we contact you as a reminder or to ask the questions? Yes No Please complete all relevant sections to you on both sides and tick the relevant boxes Name Gender Male Female Age Title: Post Code Are you a: Patient Carer Family member Other: Who is your Key Worker? What stage are you at on the patient pathway please tick those that apply Diagnosis date Pre surgery Undergoing treatment Working throughout treatment Post-surgery Recently finished treatment (6 weeks) Post treatment Risk stratified /remote follow up Living With and Beyond Cancer / / Have you received a Holistic Needs Assessment (HNA): This is where you complete a questionnaire about your concerns and needs, either on paper or electronically? You then discuss your answers with your healthcare team and create a care plan. Have you attended a 6 week HOPE (Helping to Overcome Problems Effectively) Course Have you had a 1 to 1 with your Key worker to discuss any of your concerns? 16

17 1. Please complete the following questions: at registration for the event The Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) Before Event: Below are some statements about feelings and thoughts. (SWEMWBS) NHS Health Scotland, University of Warwick and University of Edinburgh, 2007, all rights reserved. Please tick the box that best describes your experience of each over the last 2 weeks STATEMENTS I ve been feeling optimistic about the None of the time Rarely Some of the time Often All of the time future I ve been feeling useful I ve been feeling relaxed I ve been dealing with problems well I ve been thinking clearly I ve been feeling close to other people I ve been able to make up my own mind about things Total Please let us know if you have any of the concerns below or tell us if you have others in the spaces provided None of Concern the time Rarely Some of the time Often All of the time Fatigue Worry Anxiety Fear Sleep problems Pain Hot flushes sweating Appetite Eating Getting Around Anger Frustration Sore or Dry mouth Sadness or Depression other other other Score Score Do you need support and advice around physical activity? Yes No Not sure Please (circle) tell us how many DAYs you are Physically Active in the following ways Activities of Daily Living (housework, Gardening, shopping etc.) Active Travel (do not use car or public transport: walking, cycling) Exercise ( attend class, run, jog, swim, cycle) Play Sport (Golf, tennis football, netball etc.)

18 2. Please complete the following questions: At the end of the event & return all questions to registration The Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) After Event: Below are some statements about feelings and thoughts. (SWEMWBS) NHS Health Scotland, University of Warwick and University of Edinburgh, 2007, all rights reserved. Please tick the box that best describes your experience of each after attending today STATEMENTS I ve been feeling optimistic about the None of the time Rarely Some of the time Often All of the time future I ve been feeling useful I ve been feeling relaxed I ve been dealing with problems well I ve been thinking clearly I ve been feeling close to other people I ve been able to make up my own mind about things Total Please let us know if you have any of the concerns below or tell us if you have others in the spaces provided Concern None of the time Rarely Some of the time Often All of the time Fatigue Worry Anxiety Fear Sleep problems Pain Hot flushes sweating Appetite Eating Getting Around Anger Frustration Sore or Dry mouth Sadness or Depression other other other Score Score Have you received support and advice around physical activity? Yes No Not sure Comments: Any other comments: Thank You 18