Friday 1st July 2016
Mac Voice, the magazine for Macmillan professionals: Summer 2016
Much of the evidence base of the need for Health and Wellbeing Events came from the initial scoping, testing and work looking at long-term conditions.
Big event or group therapy had never been reported in cancer services before, so this was groundbreaking work. Holman & Lorig (2000) identified that, ‘When acute disease was the primary cause of illness patients were generally inexperienced and passive recipients of medical care. Now that chronic disease has become the principal medical problem the patient must become a partner in the process, contributing at almost every decision or action level. This is not just because patients deserve to be partners in their own healthcare (which, of course, they do) but also because healthcare can be delivered more effectively and efficiently if patients are full partners in the process’.
Escobar (2001) reported the benefits of group-delivered interventions including improved self-efficacy and symptom control .
Fletcher et al (2006)  examined the acceptability of group visits in comparison to individual follow-up sessions in a sample of urology patients. They found that the patients’ satisfaction with drop-in group sessions was just as high as individual follow-up sessions, with 87% of patients rating the experience as excellent. This study indicated that group sessions offered equivalent patient satisfaction at a reduced cost.
Bingen and Kupst (2010)  demonstrated an educational programme to be effective in increasing self-reported survivorship education in teenagers and young adults with childhood cancer. The programme was shown to increase their awareness of resources and enhance support.
The literature suggests that educational group sessions are beneficial to those who take part and that many find the experience valuable. Group events provide the opportunity for social learning, a shared emotional experience, and an opportunity to impart information and teach new skills. People also find that meeting with their peers helps with the transition from patient to survivor  and improves their psychological wellbeing.
Group settings can also enhance self-efficacy and the ability to cope with personal health and wellbeing. The Innovations to Implementation: How to guide outlines the way in which you can implement Health and Wellbeing Events in your local area. Health and Wellbeing Events can give people affected by cancer a unique opportunity to link with the services in the local primary care and secondary care communities.
What is a Health and Wellbeing Event?
• A Health and Wellbeing Event is a semi-structured education event that offers relevant support and information to people living with cancer in order to help them become more able to self-manage.
• The events allow people living with cancer and their families to take control of and participate in their recovery, to receive necessary information, and to learn about positive lifestyle change.
• The events are designed to help people get support that improves the quality of their lives, and makes them as long, healthy and active as possible.
What is the structure of a Health and Wellbeing Event?
The most usual format for a Health and Wellbeing Event is a short day or half-day event. Health and Wellbeing Events can be categorised as follows:
• Generic events: where there may be structured, facilitated or taught sessions, eg on fatigue or physical activity. These are non-tumour-specific, ie can be attended by people of any tumour type. Attendees can then either drop in or make appointments to gain further information on a specific subject, eg, benefits advice. Often there will be a structured taught element which is followed by a market place. This market place for example, will have stalls on different subjects or topics, eg local support groups, benefits advice, dietary information. Local community groups and services will often be invited to attend.
• Tumour-specific events: these may follow the same format as the generic events but the structured, facilitated or taught sessions are more tumour-specific, eg about the recognition of recurrence and who to contact if attendees are concerned they may have a recurrence. Alternatively there may be specific information about potential consequences of treatment, eg the potential for osteoporosis if longterm hormone use is part of breast cancer treatment. Some tumour sites may combine with other tumour sites that experience similar side effect profiles, eg prostate and bowel cancer.
• Part of stratification of the care pathway: these events would replace follow-up appointments and may follow a similar format to the tumour-specific events.
How do I set up a Health and Wellbeing Event?
Considerations prior to setting up an event:
• Who else from my organisation or team do I need to work with to achieve this objective?
• Should I consider setting up a steering group or working party including representatives from the multidisciplinary team, service users and relevant support group representatives?
• Do I understand the current evidence related survivorship issues for people living with and beyond cancer, or do I need to read more, undertake training, or shadow my colleagues?
• Do I want a small-scale quality initiative or do I want my event to be part of a wider systems change?
• What are the likely costs? What are the resource implications? What funding is available?
• Has there been any activity recently in the Trust or Health Board around Health and Wellbeing Events? If not, is there a receptive multidisciplinary team that would be willing to co-create and work on potential solutions?
• Does the Cancer Patient Experience Survey (CPES) or any other Trust data indicate any reoccurring areas of concern for patients?
• Is it possible to carry out a pre-event survey with patients to help shape the event?
• What messages will be conveyed to the participants?
• Consider your starting point. Is it best to start small with a view to rolling it out in other areas? This may initially be in one event with a subgroup of patients from that specialism.
• What are the likely training needs of those involved in planning and delivering the event – particularly if volunteers will be assisting you? Who can provide the necessary training?
• The collation of concerns raised from the Holistic Needs Assessment and care planning processes may help to identify the information and support needs to be provided at the Health and Wellbeing Event.
Logistics and planning considerations
• Who is going to manage and run the event?
• Who will deal with advertising, promotion and referrals?
• Where will the event be held?
• What will the length of the event be?
• Will refreshments be provided?
• Who is going to provide administrative support?
• How will you evaluate the event?
• How can you signpost to further sources of support?
• Have you identified local support services (eg support groups and local gyms) to make sure people living with cancer are linked back to their local communities?
The content of your Health and Wellbeing Event
The content of your event should support people living with cancer to make the shift from the treatment phase to life after cancer. You can achieve this by covering a selection of relevant subjects in the event and offering attendees the chance to meet with a range of different people, eg clinicians, complementary therapists and benefits advisers.
Consider offering people living with cancer the opportunity to:
• find out about benefits and other financial support.
• learn more about how to get back to work.
• discover information about good diet and lifestyle.
• become more knowledgeable about possible long-term side-effects and the consequences of treatment.
• learn about issues surrounding their particular cancer.
• discover the local services and facilities that are available to them in the community.
• use the event as a ‘one stop shop’ where they can get all the information, financial advice and expert medical care they need.
• meet and share their thoughts with people in similar situations, be it through support groups or a buddying service.
The benefits of Health and Wellbeing Events
The benefits for people living with cancer include:
• better knowledge of the signs and symptoms of cancer recurrence and the consequences of treatment.
• more confidence to question or challenge information and make informed decisions about their health.
• more confidence to deal with the physical discomfort and emotional distress associated with cancer and its treatment.
• a strong sense of reassurance. Even if they don’t need the services at that time, they know what support is available and how to access it in the future.
The benefits for healthcare organisations include:
• providing better patient outcomes and reducing unplanned admissions and use of health and social care.
• creating an effective atmosphere for delivering health and wellbeing messages in an informal and relaxed setting.
• empowering patients by providing knowledge and boosting confidence, leading to earlier intervention and improved outcomes.
• ensuring people know what might happen next and how they can access the appropriate service if they need to, thereby making sure that healthcare resources are used effectively.
• giving people direct referrals where necessary, ie making it easier for them to access the relevant services.
• sharing techniques to help selfmanagement for health and wellbeing, thus improving people’s quality of life and potentially lessening their need for services.
• making sure people understand the importance of remote surveillance, and therefore ensuring people continue to attend for necessary tests.
• improving access to a wide range of services, helping to address needs and improve outcomes.
• giving people living with cancer the opportunity to meet others with similar experiences, thereby providing reassurance, and reducing anxiety and the sense of isolation for anyone affected by cancer.
• utilising volunteers to add value at the events.
The funding and costs of running Health and Wellbeing Events
Some costs will be incurred when running a Health and Wellbeing Event. Even if a free venue is available, the staff time required to organise and run the event needs to be taken into consideration. Also, if volunteers are involved, their travel expenses may need to be paid.
There are various ways to fund a Health and Wellbeing Event. These might include:
Expending little or no direct financial outlay by:
• using an internal venue that does not accrue a direct cost and providing light refreshments that are internally funded or donated.
• working with the local supermarket community engagement officer who may be able to provide healthy snacks.
• seeking sponsorship from local businesses.
• working in collaboration with a healthy eating team.
Operate as part of a funded model by:
• working with local commissioners to enable the event to be part of tariff and claim outpatient appointment costs. This will need to be explored locally with relevant commissioners.
• including the costs of the Health and Wellbeing Event as part of a stratified pathway.
• applying for a grant or some other form of support from a charity or other externally supportive organisation.
1 Lutgendorf S K et al (2006) Social influences on clinical outcomes of patients with ovarian cancer. Journal of Clinical Oncology. 24:7. 1105-1111.
2 Escobar, G. J et al (2001) A randomised comparison of home visits and hospital based group follow-up visits after early post partum discharge. Paediatrics 108:3 719-727.
3 Holman H and Lorig K. Patients as partners in managing chronic disease. BMJ. 2000. 320:526. http://dx.doi.org/10.1136/bmj.320.7234.526.
4 Fletcher, S.G. et al (2006) An improved approach to follow up care for the urological patient: drop in group medical appointments. Journal of Urology 173:3 1122-1126.
5 Bingen, K. & Kupst, M.J. (2010) Evaluation of survivorship education programmes for adolescent and young adult survivors of childhood cancer. Journal of Cancer Education. 10.1007/s13187-010-0077-y.
6 Cimprich. B. Janz.N.K. Northouse. L. Wren.P.A.Given. B. Given. C.W. (2005) Taking charge: a self-management programme for women following breast cancer treatment. Psychoncology. 14.9. 704- 717
7 Stanton. A.L. Ganz. P.A.Kwan. L. Meyerowitz. B.E.Bower. J.E.Krupnick. J.L. Rowland. J.H. Leedham. B.& Belin. T.R. (2005) outcomes from moving beyond cancer, psychoeducational, randomised, controlled trial with breast cancer patients. Journal of Clinical Oncology 23: 6009-6018
8 Lepore. S.J. Helgeson. V.S. (2003) Psychoeducational support group enhances quality of life after prostate cancer. Health Psychology. Sep 2003 Health Psychology. Sep 2003; 22(5): 443–452. doi: 10.1037/0278-6126.96.36.1993
9 NHS Improvement (2013) Innovation to implementation:Stratified pathways of care for people living with and beyond cancer A ‘how to guide’.
Continue reading this issue of Sharing Good Practice
Introduction to Health and Wellbeing Events
Evaluating Health and Wellbeing Events
Case Studies: Health and Wellbeing Events
Policy: Health and Wellbeing Events
The Recovery Package resources