After treatment finishes, cancer survivors need empowerment to ensure they remain healthy, reports Jo Carlowe
More from: Cancer Survivorship
Give a man a fish and you feed him for a day. Teach him how to fish and you feed him for a lifetime.
It’s an oft-cited quote but, when it comes to self-management in health, it could not be more apt.
Self-management was developed around 20 years ago by Professor Kate Lorig, of the Patient Education Research Centre at Stanford University in California, to help patients manage long-term conditions such as diabetes.
Increasingly, health professionals and patients are realising its potential for other illnesses, not least cancer.
In 2003 Macmillan launched Living with Cancer. This course teaches people to manage their conditions using five core skills: problem-solving; decision-making; making the best use of resources; developing effective partnerships with healthcare providers; and taking appropriate action (Lorig, 2007). Macmillan is to launch a new version of the course called New Perspectives. It will still be based on the Stanford course, but will include cancer-specific issues raised by past participants.
Courses usually comprise six weekly sessions, run by volunteer tutors with personal experience of cancer. They help participants discuss topics such as relaxation, diet, exercise, fatigue, managing pain and medication, and communicating with health professionals. Numbers are kept to around 12 and the meetings are highly interactive, focusing on building skills, sharing experiences and support.
The Lorig model is also used by the highly successful Expert Patient Programme (EPP), which is run in the UK for people living with long-term conditions.
A randomised trial carried out by the National Primary Care Research and Development Centre found that EPP course participants had improved partnerships with doctors, increased confidence in managing their condition and reported improved well-being and increased energy. Four to six months after the course, GP consultations had decreased by 7%, outpatient visits by 10% and A&E attendances by 16%.
The fact that self-management for long-term conditions has proved to be successful may well have helped put the conditions into the spotlight, with health minister Ann Keen recently announcing there will be personalised care plans for all such patients by 2010.
The same focus has yet to be applied to self-management for cancer survivors and few studies have tested its efficacy.
‘There have been so few behavioural interventions for people with cancer that we really do not know,’ says Professor Lorig. She intends to begin studying this within a few months.
Courses like Living with Cancer remain few and far between.
‘After treatment, a lot of people are simply given the name of a specialist and fall out of the system,’ says Lynn Batehup, project manager of the National Cancer Survivorship Initiative’s self-management workstream. She believes that cancer survivors should have the same access to self-management courses as people with long-term conditions.
When asked whether self-management is relevant to cancer survivors, Professor Lorig is unequivocal. ‘Absolutely. The diagnosis puts a whole new light on the future,’ she says.
‘People can live in a grey area after an acute illness as they don’t have a chronic illness but may have long-term side-effects of the cancer and its treatment. In addition, there are years - if not a lifetime - of follow-up, which brings its own fears and anxieties. How well someone gets on with life after cancer treatment depends to a great extent on how they self-manage all these life changes.’
Self-management is achieved by:
- Helping patients to easily access information about their condition;
- Letting them know what is ‘normal’ for their condition;
- Empowering them to know when, where and how to get help;
- Helping people to understand more about medication;
- Enabling them to recognise and monitor their symptoms and side-effects;
- Allowing people to undertake strategies to aid their recovery;
- Supporting people to have the confidence and skills to manage better.
Yet many health professionals remain unclear about the meaning of self-management, and while we have focused very much here on self-management education, we need to be clear that self-management support is much more than that. Often it is confused with patient education, which is more paternalistic.
‘Patient education usually means information transfer given in a didactic approach, run by a trust or hospice and, of course, it has its place,’ says Batehup, ‘However, self-management involves no transfer of content as participants are the ones who raise the issues and share their problems and goals.’
So, for example, instead of giving out handouts, the course facilitators may say where people can access the information themselves. The aim is to ‘empower patients’.
Ms Batehup says this includes teaching people to take a more active role in discussing and monitoring medication, monitoring side-effects and knowing when to report them, understanding when things are getting worse and learning to cope psychologically.
‘It’s also about role-modelling. These courses are not run by professionals - the facilitators are people with the condition themselves. It is also about peer support. Around 70-80% of people who attend the courses stay in touch, meeting regularly for coffee to discuss how they are getting on.’
The empowerment of patients throughout their cancer journey is part of the government’s Cancer Reform Strategy. As part of this, last year the National Cancer Survivorship Initiative was launched, informed by a ‘think tank’ event organised by Macmillan Cancer Support.
NCSI aims to enable people with a cancer diagnosis to lead as healthy and active a life as possible. This will include pushing for survivors to have the same access to self-management courses as people with long-term conditions, with self-management integral to service provision and underpinned by commissioning.
A possible short cut to this could be for cancer itself to be dubbed a long-term condition.
Professor Lorig explains: ‘Cancer can be both an acute and a long-term condition. There are forms of cancer where people are in a watch-and-wait state for years and years without treatment and then there are treatments that go on for years and years. For everyone who has ever had cancer, there are years of follow-up.’
Ms Batehup says: ‘We are grappling with the issues about the benefit of cancer being called a long-term condition. We need to encourage commissioners to think about self-management for cancer.’
If classifying cancer as a long-term condition means that more cancer survivors learn to self-manage, it seems that few people will argue over semantics.
Christine McGowan, aged 60 from West Yorkshire, attended a Living with Cancer course following treatment for non-Hodgkin lymphoma.
‘It was very good - we covered things like dealing with stress and how to deal with not being as active as before. It was run by two ladies who were brilliant.
‘We had a laugh, although some of it was serious. In one session, the women asked if we had made a will. Out of 12 people only one of us had. That was quite upsetting. One young girl got up and walked out but she came back.
‘We still meet up ourselves every couple of weeks.
‘The course taught me to tackle the way I talk to health staff. In the past, if they said: “Are you alright?” I would say “yes” even if I wasn’t.
‘It has also taught me to play a more active and equal role in managing my health. So, if given a prescription, I will ask the person to talk through it and I will check if everything is necessary or whether I can cut down on some of the medication.
‘It has taught me to find out what the problem is and to think “what can I do?”. I was poorly and it has helped me to get back on track.’
Lorig, K. (2007) Self-Management of Long-Term Health Conditions: A Handbook for People with Chronic Disease. Boulder, CO: Bull Publishing Company.