Feature

Patients are a virtue

Patient participation can help health services to develop – but doctors must learn to participate too, says Jill Murie

A carer from childhood and a doctor for over 20 years, I am no stranger to patients’ perspective on illness. Back in the 1960s, I pleaded with a resistant GP for Asmapax when my asthmatic and unwittingly dependent mother could not catch a breath despite being on this potentially addictive and hazardous drug.

I attended her when a stomach ulcer perforated ‘silently’ while she was on long-term steroids and I despaired when her GP misdiagnosed her TB as impending dementia. In those days, patients and carers were willing to put themselves unreservedly into the hands of doctors, who ‘always knew best’.

It was not until around 1972 that patient participation groups (PPGs) started to obtain feedback from patients. Then, there were some 19 PPGs in England and Wales. Today, estimates put the number of practices with an active PPG at 700 to 1,000, or 8-12 per cent of all practices in England. However, disbandment rates are high at around 25 per cent.¹

In Lanark, where I practise, Lanark Health Club is one of the longest surviving patient groups. When it opened in 1991, the number attending this community-based health-promotion initiative topped 120 people a night. Now there are around 60 regular members who take part in keep-fit classes and go walking. The club has helped improve communication between the community and the practice, as well as being a useful source of information and advice.

Single-issue groups, such as Lanark Health Club, which focus on a defined medical or social need are relevant to participants and bring about meaningful patient involvement. But since most members are older, social class I and II, female and self-selected, they are not representative of the whole community.

This is a recognised problem with PPGs in general. Patients who participate are less likely to be men, aged between 16 and 29, from social class IV and V, single or smokers.²

In Clydesdale, the local health care co-operative (LHCC) obtained funding from the government-backed ‘Designed to Involve’ initiative to set up a PPG in each of Clydesdale’s ten practices to ensure that each small and diverse community was consulted, informed and represented at LHCC level. GPs from each practice were encouraged to participate.

In Lanark, patients were recruited from surveys, information leaflets placed strategically in the waiting-room and advertisements in the local press, which reported on progress. In addition, contributions were invited from carers’ organisations, voluntary groups such as the Women’s Royal Voluntary Service, and community councils.

The timing of the first Lanark meeting was fortuitous in that it coincided with the cutting of the first ‘sod’ of the new health centre. This provided a necessary focus. At its inaugural meeting, the Lanark PPG was attended by 36 patients who, in small groups, identified 34 areas for development in the new build. These ranged from email consultations and palm-held computers to practice-based alternative and specialist clinics. In an open debate, patients selected four priorities: patient transport, telephone answering, electronic repeat prescriptions and local X-ray facilities.

Thus, the Lanark PPG has been effective in terms of consulting and informing a self-selected and articulate subgroup of individuals. It is adequately funded and supported by an enthusiastic GP and a competent lay leadership.

In other practices, PPGs have not been so successful. GPs in two practices were vehemently opposed the concept and refused to become involved. Some meetings have been politically ‘hijacked’ and others sabotaged by ‘pretend’ patients such as an inquisitive local drug baron who attended a meeting on community policing.

While solutions to many problems can be found in effective organisation, adequate resources, education and training, doctors’ values or beliefs play a major role in determining the outcome of PPGs. Some GPs have difficulty acknowledging the legitimacy of patients’ and their representatives’ preferences.

Some GPs are strongly opposed to patient involvement in decision-making on the grounds that it will lead to an excessive demand for inappropriate, expensive or harmful interventions. Patients, rather than managers or health professionals, taking charge raises concerns about equity, accountability and medico-legal liability.

Clinicians can perceive any explicit demand made by patients as a challenge to their autonomy. Johnson describes a constellation of traits arising from a doctor’s sense of omnipotence, which makes relationships with others on equal terms problematic.³ Behind superficial charm may lurk an indifference to or even disregard for others, and sometimes overt snobbery, intellectual as well as social. You can sometimes spot these figures of considerable status in their surgeries by the height of their chair relative to their patients.

Most GPs are inherently decent people, and some are painfully shy. Unfortunately, there is rarer breed of GP, who automatically consider: ‘What’s in it for me?’ They will find their reward in the new General Medical Services contract in which the ‘patient perspective’ is included as part of an incentivised quality framework.

Complaints evoke defensive professional behaviour – but patients rarely complain. Involving them and their carers in decision-making not only improves patient safety but restores public confidence. Sadly, though, Labour’s doctrine of patient participation at every level of the NHS will not become reality without some further encouragement for doctors to respond to growing patient empowerment.