Supporting self-care in the 21st century – a long-term (conditions) view

The policy context

There are more than 15 million people in England living with a long-term condition and this number is expected to double by 2030. The NHS and an increasing number of alternative providers support people through excellent clinical care every day, but people say they want to do more for themselves – as long as they get the right support.

We know that better-informed people achieve better health and quality of life. They are more confident and better prepared to manage changes in their condition. People with long-term conditions are experts in how their conditions affect them and their lives. But being an active participant in improving your health and wellbeing is not always easy and can prove quite a challenge if feeling ill and vulnerable. In these circumstances, people often need the additional support of their clinicians as well as their family and friends.

Approaches to self-care support

There is a range of approaches to self-care and the NHS can support people in involving them through a process of discussion, decision-making and ongoing support, as part of the care planning approach. A personalised care plan is a record of the discussion about the support and services available to help someone live with their condition, including agreed decisions, actions, goals and follow-up. Everyone with a long term condition should be offered a personalised care plan by 2010.

We know that the delivery of truly personalised care for people with long-term conditions goes beyond just treating an illness. It requires a holistic approach that puts the individual at the centre of their own care. Personalised care planning should incorporate many aspects of a person’s health and wellbeing, including looking after body, spirit and mind. The process will involve input from a multi-disciplinary team of professionals, but most importantly features a relationship between the person themselves and their key worker which in healthcare is usually a clinician. Ideally the key worker is the choice of the individual person.

What is self-care?

Self care is an integral part of daily life and is all about people taking responsibility for their own health and wellbeing, with support from and in conjunction with the people involved in their care. Self-care includes the actions people take every day in order to stay fit and maintain good physical and mental health; meet their social and psychological needs, prevent illness or accidents, and care more effectively for minor ailments and longer term conditions.

The importance of supporting self-care

The importance of engaging people to self-care in order to better manage their long-term condition is further highlighted by research conducted by MORI. 1 This revealed that only half (53%) of those surveyed took an active role in taking care of their condition ‘all of the time’, of these 51% stated that they felt comfortable in doing so.

Two-thirds of those surveyed had also approached their GP, practice nurse or pharmacist within a six-month period seeking self-care advice and information, reinforcing the need for a more personalised approach to care.

Government policy to support self-care has been developing since 2000 when self-care was highlighted as one of the key building blocks for a ‘patient-centred NHS’. This has been followed up with a wider strategy for improving self-care support for people with long-term conditions, most recently in the form of Your health, your way – a guide to self-care and long-term conditions. This is a website, hosted as part of NHS Choices (www.nhs.uk/yourhealth), supported by a patient information leaflet and supporting information for professionals (www.dh.gov.uk/yourhealth).

Your health, your way brings together existing policy in an easily accessible format – the first time this policy has been given a public face. It aims to raise public awareness of the range of support people can expect from the NHS as they choose the degree of support to self-care. Other developments include information prescriptions, a range of guidance for personalised care planning and development of core competences for the workforce.

The five key areas of self-care support

Information – about the condition, provided in the way people want it, when they want it. Services to support healthy lifestyle choice such as help to stop smoking, eat healthier, exercise more. General or condition-specific training courses to help people feel more in control. Access to and information about support networks/ self-help groups to help people get together with other people with the same condition. Tools and equipment that can help people to manage their condition better and stay independent.

Delivering effective support for self-care

It is important to recognise that supporting people to self-care requires a change in the traditional relationship between clinician and patients – to become one of ‘working with’, rather than ‘doing to’. Supporting self-care is about a culture shift which changes the relationship between the clinician and the individual.

What should happen is that people with long-term conditions should be able to have a conversation about their condition and how it is impacting on the things that are important to them. They should be able to discuss the range of self-care support available, the extent of their self-care, what support groups are available and the most convenient way for them to access further information.

Managing minor ailments is an aspect of self-care which is even more important when living with a longterm condition. The role of the community pharmacist in supporting self-care can be key in terms of managing minor ailments. Pharmacists have successfully built relationships with people in local communities and are increasingly raising their profile as not only managers of medicines, but also as healthy living advice centres. For people who are on lifelong medication, the community pharmacist is in a position to provide additional, convenient and professional support so people can manage their conditions more effectively.

Effective self-care support needs co-operation between all parties concerned – health, social care and local authorities working with community, voluntary and private sectors to provide local solutions to embed supported self-care as a practical option. But at the heart of this support is a trusting relationship between the person and their key worker. This is vital if people, not just those with long-term conditions, are to attain their full potential in terms of health and wellbeing in the 21st century.

Case study

Self-care in respiratory practice

While splitting his time between acute cases and a busy respiratory clinic and ward, consultant Jonathan Fuld has managed to evolve a new way of dealing with his patients which could help to achieve results that most definitely complement his specialist medical care. Jonathan, who is a physician in acute and respiratory care at Addenbrookes Hospital in Cambridge, is now a firm believer in also providing his patients with self-care support which he sees as potentially contributing to a major impact on the lives of his long-term condition patients.

He explains:‘Inhalers and other medical treatments definitely achieve a degree of stability for someone with primary respiratory problems such as chronic obstructive pulmonary disease (COPD), but the biggest interventions to maintaining health are actions the patients can take for themselves.’

Jonathan, who leads the Health Foundation-funded Co-creating Health Initiative at the Cambridgeshire Trust, underwent specialist training as part of the initiative to enable him to work with his patients in a more individualised and personal way, and now applies the new way of thinking wherever he can. He says:‘Self-care support is all about clinicians being there to support people making decisions that could impact much more than us just writing on a prescription pad. ‘It centres around supporting the patient’s own beliefs and actions about self-help. It’s talking with the patients, getting them to face their fears and ask questions in an effective manner. And for patients with a long-term condition, this is a vital additional resource that can be added to the care we provide.’

The training enabled Jonathan to learn to listen to his patients more; to understand their personal priorities; give them confidence in their actions; and to use his experience and authority to help them in making their decisions.

He now tries to provide a balance between specialist medical care and supporting his patients on their selfhelp choices, but as Jonathan admits, it’s not always enthusiastically received. continued…

‘For someone with COPD, the best course of action would be for the patient to stop smoking and to introduce some form of pulmonary exercise regime.The effects of exercise and general wellbeing are now well recognised, but smoking can still remain a major sticking point with some patients.Yet it’s our role to do all we can to ensure individuals get the best care possible, so it’s an issue which I tackle frequently.’ Although Jonathan sees the support as a different resource to call upon to make his consultations even better, and ultimately achieve better outcomes for his patients, he also ensures they are made aware of the other support groups and services that are available to them. For example, the smoking cessation and pulmonary rehabilitation programmes run by the hospital as well as the Breathe Easy Club run by the British Lung Foundation. Jonathan adds:‘I want to signpost patients to the care and support they can obtain beyond our consultation as well as help them make decisions that will have an effect on their long-term health.’ With his busy clinic and constant flow of acute cases, Jonathan does still try to see how else he can improve the self-care support provided and is currently looking at introducing a user group for the clinic to help his team develop their services even further. Jonathan concludes:‘It’s all about working together. Ultimately, consultations should be viewed as a meeting of partners in care. One of the partners has obviously got more medical experience, but it is still a partnership which if managed effectively can achieve significant results for the patient, and that’s what we’re aiming for together.’

Case study

How I battled rheumatoid arthritis Stanter Kandola may have been born on India’s Independence Day and given a name which means liberation and independence, but she has only recently found what she believes is true freedom. Born into a strict Indian family, Stanter was diagnosed with rheumatoid arthritis at 15 and for many years was faced with the dual dilemma of dealing with her restrictive traditional upbringing, while also coping with diagnosis and the inevitable complications from the chronic disease. Now in her early 40s, Stanter says:‘Ironically my name actually means independence, yet I strived for this for most of my early life.With such strict parents, I was dictated to over how I was supposed to live my life anyway, but then being diagnosed with rheumatoid arthritis was a double blow. I was a young Indian girl who was fighting against being controlled in every aspect of my life, including what I could do with my illness.’ The pressure became too much and eventually Stanter did the unthinkable, leaving home in a non-arranged marriage. She says:‘Looking back, I managed to leave with dignity, but it was all too much and maybe linked to me battling with wanting to do the right thing by my family and myself, my rheumatoid arthritis got very bad.’ At the same time, her experience with medical professionals was also extremely disappointing and she recalls that after being told on several occasions that her future would be in a wheelchair, she stopped seeing doctors for a number of years as she believes she was never really asked how she felt or what she wanted. ‘I was in a terrible place in my life and I was blaming everyone and everything. But thankfully in my late teens I took a grip and started to question myself, everything, to find answers, guidance and alternatives.’ With their proud Indian roots, Stanter’s parents had equally never really questioned on her behalf and now Stanter was on a mission to find the freedom and independence she desperately craved.‘Up till then I’d been scared to deal with things I was afraid of. For example, education – I had always viewed myself as not very bright.’ But this proved far from the case as Stanter enrolled on an Access to Higher Education course and following a very emotive and challenging year out backpacking in India (again, as part of her mission to push the boundaries even further), she achieved a degree in social anthropology. ‘This was a time when I was really testing myself. I was determined not to let rheumatoid arthritis define my life, like so many other people do. I wanted to prove that there was no reason why I couldn’t push forward and live my life to the full.’ Along the way, Stanter discovered the benefits of meditation and yoga, and explored the whole issue of consciousness and spirituality.‘My sister was working with a specialist centre in the US and I was able to attend as both a student and tutor which was a great way to learn. I was able to build my self-esteem and also my very belief in myself.’ Back in the UK, Stanter has continued her quest to seek alternative care and support for her illness, concentrating on wellbeing, diet and her yoga and meditation.‘I believe I’ve now found the perfect balance between clinical and alternative care. By looking after myself I can ensure my body remains strong enough to deal with the clinical side of my condition, and along the way I’ve become much more conscious and aware of everything that’s good in my life. I don’t dwell on the ‘ifs’ anymore. It’s taken me almost 30 years to get to a place where I am happy, healthy and have a job I love. ‘Yes, I’ve been bedridden numerous times, had multiple surgeries, and believe me I know what hell is, I’ve been there. But although my life journey has taken me to some very dark places, it has taught me so much about who I am and what I can achieve.’ Now, using the very experience she has gained over the past 25 years, Stanter is a health trainer in Kirklees, specialising in emotional work and sharing her knowledge and findings with other patients. Stanter concludes:‘This job is the most valuable help we can give.This is fundamental support, showing people they have it in themselves to make changes and turn things around.’

References

1 Department of Health. Self care: A national view in 2007 compared to 2004–05. Available at www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_085351

By David Colin-Thomé

National clinical director for primary care, Department of Health