Friday 1st July 2016
Mac Voice, the magazine for Macmillan professionals: Summer 2016
The Recovery Package is a series of key interventions including Health and Wellbeing Events which, when delivered together, can greatly improve outcomes for people living with cancer. It is central to Macmillan's objective of achieving its Nine Outcomes.
This good practice guide will discuss the rationale for developing and providing Health and Wellbeing Events, to enhance supported self-management and improve information and support for people living with cancer. For the purpose of this document we will refer to them as Health and Wellbeing Events, although sometimes they may come under different names such as treatment days.
Background to the Recovery Package
There are over 2.5 million people with cancer in the UK, and this is projected to increase to four million by 2030. Research shows that one in three cancer survivors experience moderate to severe unmet needs at the end of treatment, and for 60% of people, these needs have not been improved six months after treatment. These findings are supported by subsequent National Patient Reported Outcome Measures (PROMs) which have found that people with cancer experience persistent long-term problems.
The PROMs survey also identified that if a person has one or more long-term conditions other than cancer, they are likely to have poorer quality of life scores. Even those wit no other long-term conditions had poorer quality of life scores when compared to the general population.
Although more people are being diagnosed with cancer in the UK, more people are surviving a cancer diagnosis due to earlier detection and improved treatments. Cancer is moving from a disease where mortality was often the norm to one where more people can expect to live healthy and active lives for many years after their treatment is over. However, this also presents health and care services with the challenge of delivering sustainable healthcare to this group.
The increase in cancer prevalence and the evidence of unmet needs will require a transformation in the way that the NHS cares for people affected by cancer.This will mean moving away from the emphasis on acute and episodic care towards a holistic, personalised approach that is well coordinated and integrated. Health and Wellbeing Events can form an important part of this approach.
The National Cancer Survivorship Initiative (NCSI) was set up in 2008 to address these challenges. Its aim is to 'ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible'.
The NCSI has developed and tested a number of key interventions, together called the Recovery Package. Its report, Living with and beyond cancer: taking action to improve outcomes emphasises the importance of the Recovery Package in achieving better outcomes.
It highlights that people will have greater wellbeing, and their demand for services will be lower, if they get the support that is relevant to their particular needs. This support should promote healthier lifestyles and independence.
The Recovery Package is made up of the following elements:
• a Holistic Needs Assessment (HNA) and care planning at key points of the care pathway.
• a Treatment Summary completed following treatment, then shared with the person living with cancer and sent to their GP.
• a Cancer Care Review completed by the GP or practice nurse to discuss the person’s needs. The review should happen within six months of the GP practice being notified that the person has a cancer diagnosis. It should be the start of an ongoing conversation required across the cancer care pathway.
• an education and support event, such as a Health and Wellbeing Event, to prepare the person for the transition to supported self-management. The event should include advice on the relevant consequences of treatment and the recognition of issues, as well as details of who to contact. It should also provide information and support about work and finance, healthy lifestyles and physical activity.
The Recovery Package also complements the introduction of stratified care pathways which enable individualised follow-up care. This can either be through a supported self-management approach, with rapid access back into the specialist team should this be needed, or through continued face-to-face follow up with healthcare professionals.
A Health and Wellbeing Event is a crucial part of supporting not only stratification of care pathways, but also ensuring people feel well supported during a period of transition between ending treatment and finding their ‘new normal’. A Health and Wellbeing Event may be used to improve the level of support within the existing care pathway or as part of stratification of care pathways.
Introducing a Health and Wellbeing Event will support:
• people living with cancer to seek information beyond the secondary care environment by the provision of accurate,
relevant and trustworthy information.
• a more systematic and proactive approach to cancer care and rehabilitation to aid recovery, improving outcomes for
people living with cancer. This will reduce unnecessary use of health and social care resources. This will allow and support people to live a healthy and active lifestyle.
• a greater emphasis on empowering people to manage their own care by giving them the appropriate information and support to do so.
• a shift in focus from a standard 'one size fits all' approach to one where follow-up care is truly patient-centred and where clinical, psychosocial and practical needs are assessed and managed effectively. This proactive approach will help improve the patient experience, avoid unnecessary appointments and avoid unplanned admissions. Achieving this balance between quality and cost is a key consideration for both commissioners and providers.
• a cultural shift in the approach to care and support for people affected by cancer and act as a transition to supported self-management and survivorship.
• people who report feeling isolated and abandoned at the end of treatment,. This can be helped with better information and support.
• opportunities to promote healthy lifestyle advice and self-management skills.
• group delivery of information, which means peer support will be more cost effective.
• opportunities for carers to seek the information they need to offer support to their relatives or friends.
 Macmillan Cancer Support estimates of prevalence at the end of 2012 and 2030 by nation in the UK, estimated using prevalence rates from Maddams J, Utley M and Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. British Journal of Cancer. 2012. 107:1195–1202.
 Armes J, Crowe M et al. Patients’ Supportive care needs beyond the end of cancer treatment: A perspective, Longitudinal survey. Journal of Clinical Oncology. 2009.27(36):6172–6179.
 Glaser A, Fraser L et al. (2013) Patient Reported Outcomes of cancer survivors in England 1-5 years after diagnosis: a cross sectional survey. BMJ Open. 2013. e002317. Published online April 12 doi: 10.1136/bmjopen-2021-002317.
 National Cancer Survivorship Initiative. Living with and beyond cancer: taking action to improve outcomes. 2013. Department of Health.
 NHS Improvement. Stratified pathways of care ... from concept to innovation. Executive Summary 2012.
 NHS Improvement. From Concept to Innovation. 2012.
 Macmillan Cancer Support (2013) Facing the fight alone: Isolation among cancer patients.
Continue reading this issue of Sharing Good Practice
Evaluating Health and Wellbeing Events
The evidence base for Health and Wellbeing Events
Case Studies: Health and Wellbeing Events
Policy: Health and Wellbeing Events
The Recovery Package resources