Chapter 7
Seeing self care from the
patient’s perspective

This chapter considers the patient’s perspective. It gives patients’ views about the nature of support for self care that is currently available in theNHS. Then it discusses whatwe can do to improve the range of self care resources available and the manner in which we promote and support self care.

Many people already practise self care to a greater or lesser extent, as the report in Box 7.1 of focus group discussions demonstrates.1 Patients participating considered that there were four main issues that require self care or self management:

medical issues (such as drug side-effects and changing diet)
emotional and psychological issues (such as isolation and low mood)
making lifestyle changes
gaining a thorough understanding of their disease, which can enhance motivation
to self care and help to guide decision making about alternative actions.1

Box 7.1:

Patients’ reported self care

In a series of two focus groups organised by Health First the 18 patients who discussed self care emphasised the importance of being assertive with the doctors and nurses looking after them to obtain optimal advice and treatment for their conditions.1 Establishing a relationship of trust between health professional and patient was thought to be key.

Self managing the emotional and psychological consequences of a long term health condition was seen as key, as mental wellbeing impacts on an individual’s motivation to self care. Patients taking part appeared to have received minimal guidance from health professionals about the emotional and psychological side of coping with their illness, relying on friends, family and other patients through informal self help and peer-to-peer support instead. Some patients had benefited from ‘positive thinking’ (e.g. cognitive techniques) to take care of their emotional issues.

Many of those participating reported using complementary therapies (e.g. massage, acupuncture, herbal medicine) when taking care of their long term conditions.

Patients’ definition of self care

Patients’ views of self care are mainly concerned with the practical tasks or behaviours involved, including issues such as taking medication and exercising, and gaining knowledge of the disease. Some of the patients participating in the focus group discussions (see Box 7.1) had a broader understanding of self care (see Box 7.2). Those who had been through the Expert Patients Programme (EPP) mentioned a more individualised approach to self care ‘fine tuning what works for you’, reflecting the problem solving approach included in EPP training (see Box 7.7 also). Some appreciated the beliefs and attitudes associated with self caring such as ‘taking responsibility’ and ‘making one’s own decisions’.

Box 7.2:

Definition of self care by patients themselves

Practical elements

Taking care of your own health e.g. taking medication, changing diet, exercising
Doing your own research and gaining knowledge of the disease
Finding alternatives and fine tuning what works for you
Entertaining your mind
Relating to others with a similar condition

Attitudes/beliefs

Taking responsibility and making your own decisions
Having confidence1

Health professionals could consider expanding their definition of self care to include the beliefs associated with self caring behaviour.

How are patients self managing or self caring at present?

Managing treatment

Patients’ self-initiated approaches to treatment can include the use of complementary therapies. A patient can sometimes mistakenly make inappropriate management decisions, such as stopping conventional medicine due to side-effects, in favour of unproven alternatives such as herbal medicine for the treatment of conditions such as hypertension. Complementary approaches play a significant role in many patients’ self care. Patients need reliable information and advice about complementary treatments and how to select appropriate treatments (e.g. which questions to ask when exploring and making an assessment of alternatives).

Minor ailments like sore throat are self limiting and can be alleviated or resolved with OTC treatments or other self care approaches (see Chapter 6).

Managing emotional/psychological issues

The emphasis for patients should be on thinking positively, accepting their condition and building motivation and self-confidence. There is clearly a link between someone’s ability to manage emotional and psychological issues and their motivation to self care. Coping with emotional issues may be a key first hurdle in successfully self caring for their health condition. Patients will gain support from a variety of sources (see Box 7.3), including their religious faith. Learning and practising cognitive techniques such as positive thinking and re-framing (i.e. turning negatives into positives) can help. Effective guidance from health professionals in dealing with issues such as denial, bereavement and low mood will help too.

Box 7.3:

Sources of health information that may influence help-seeking

behaviour2

Family, friends, work colleagues, acquaintances
Community leaders, local people recognised as sources of health-related advice
Self help groups, self care support networks and community and voluntary organisations
Consumer health information and advice services
Telephone helplines and high street and hospital information points
Health food retailers
High street pharmacists
Health care providers outside the NHS (e.g. acupuncturists, chiropractors)
Healthcare providers within the NHS (e.g. dentists, doctors, nurses)
Individuals associated with healthcare providers (e.g. relatives and friends of health professionals)
Pharmaceutical companies
The media (newspapers, soap operas, dramas etc)

Making lifestyle changes

Patients may take up various forms of exercise, change to a better diet or limit the amount of alcohol they drink to within recommended levels. They can draw on a variety of resources that can help them change.

Professional bodies, local communities, general practices and others offer a whole range of activities to encourage people to make and sustain lifestyle changes (see Box 7.4).

Box 7.4:

Examples of resources and support for improved lifestyles for patients and the public

Stafford Borough Council offers free led walks in its ‘Walk Wise’ initiative - half hour walks that anyone can join.3
Pharmacists offer structured stop smoking programmes.
The Chartered Society of Physiotherapy has produced The Lazy Exercise Guide for Busy People that indicates how physical activity can be incorporated into someone’s everyday life.4
Local NHS trusts in association with Dr Foster5 publish a free magazine for ‘lads in their twenties’ and a similar version for young women. The FIT magazine has general information on lifestyle habits - sex, illicit drugs,smoking, alcohol consumption, etc, with local information. The magazine has a similar look to commercially available ones which also contain pertinent articles about improving health and lifestyle - such as Men’s Health.
The Arthritis Research Campaign (and similarly other disease specific organisations) produce a variety of booklets and other types of information that encourage a healthy lifestyle for arthritis sufferers and better managing their disease.6
Cancer Research UK publishes material designed to help people halve their risks of cancer through stopping smoking, staying in shape, eating and drinking healthily, avoiding sunburn and attending recommended health screening.7
MIND produces a range of self care booklets for patients to improve their mental wellbeing including such topics as: The MIND Guide to Relaxation, How to Cope as a Carer, How to Assert Yourself, How to Look after Yourself.8

Gaining knowledge of their disease

Knowing about their disease or ill health should help patients in taking care of themselves. The internet is one of the more commonly used sources of information, although books, self care support networks and alternative therapists all contribute.

At present, people are exposed to many competing and often inconsistent messages from diverse sources. Patients need guidance on appropriate and easily accessible sources of information from the internet where the quality and reliability of information can be variable (see p. 107).

Various organisations produce materials to aid people’s quest for knowledge about their disease (see Box 7.5 for examples).

Box 7.5:

Examples of organisations that encourage people to learn more about their disease and treatment options

Allergy UK has developed a patient self assessment checklist for asthma.
The Consumer Health Information Centre (CHIC) produces quick reference guides for a general readership, e.g. a guide to allergies with a searchable online database of products to treat minor ailments.9
Diabetes UK.10
The Developing Patient Partnerships (DPP) produce a range of materials to support their regular campaigns in association with PCTs – these covered minor ailments, sexual health, obesity, mental health in 2005 – enabling patients and the public to take care of their own health.11 Some materials are produced in association with other bodies such as the Royal Pharmaceutical Society, National Pharmacy Association and CHIC, e.g. a self-help guide to childhood ailments.
Family Doctor Books are published in association with the British Medical Association. They are available for purchase through pharmacies or from the website.12
Nurse practitioners, diabetes nurse specialists and other specialist nurses, in particular, provide useful, in-depth, information on the disease as well as practical advice on self care in an interactive style.1 Patients value health professionals taking time to provide detailed information that is relevant to them, and not taking for granted what they may or may not already understand about their condition. The focus should be on providing disease information that is tailored to the individual, encompassing both detailed background on the condition and self care skills (e.g. self-monitoring and managing diet).

part 2

Chapter 7 Seeing self care from the patient’s perspective