Mike George on a new report that highlights the key role seriously ill people should have in planning their own care
The Guardian - United
Kingdom; Feb 28, 2001
BY MIKE GEORGE
If you were very ill, would you want to be asked about how the health or social care services you receive could be improved? Or, as doctors often advise, are you likely to take things "one day at a time"?
Research released today by the Joseph Rowntree Foundation shows there's enormous confusion whether those with serious and often life-threatening conditions should be asked to participate in the planning and delivery of their own care, or of the care generally available for people with their condition. For while government departments, local authorities and care agencies make much of "user involvement", it is often assumed that seriously ill people either shouldn't be asked, or are incapable, of exercising this option.
Penny Rhodes, co-author of today's report, points out that misconceptions often arise because, in the past, agencies may have asked people with terminal or serious conditions to serve on user panels, but often they didn't turn up. This could be because at the time they were not well enough to take part, or simply because not enough thought was given to providing reliable transport to and from meetings.
However, it is true that some service users may feel unable to overcome emotional or conceptional barriers to involvement. For instance, the sheer uncertainty of how they will feel day to day and week to week makes it impossible to think about their own future, never mind that of others. People may also be living with the stress of alternating hope and disappointment; others may have learnt to cope with the experience by living from day to day.
Even so, says Rhodes, health and other support agencies should not assume that barriers like these preclude user involvement. First, agencies need to understand how these practical, emotional and psychological factors frame the experience of sufferers and their carers. Second, agencies have to acknowledge that they may make many demands on a person's time and emotional energy. Third, agencies must be imaginative in how they ask sufferers to become involved in service planning and delivery, and in how they intend to make user involvement an accessible and realistic process.
The research focused on service users with multiple sclerosis, cystic fibrosis and motor neurone disease. It also highlights the ways in which people can become socially invisible and excluded, making user involvement even more unlikely. This may be due to an understandable reaction on the part of parents of a seriously ill child, for example. Their focus will inevitably rest on the child's condition and care, and on the emotional impacts this has on the family.
But there is also the uncomfortable fact that provision of health, palliative and support services, and the consequent attention paid to user involvement, is uneven, depending to a large extent on the numbers of patients with particular conditions. Rhodes stresses that while comparisons are invidious, conditions such as cancers appear to have attracted more attention than cystic fibrosis, for instance, or a host of other serious illnesses affecting small numbers, but which together involve a considerable number of service users and their families.
Perhaps the main exception to this is the very active campaign by those living with HIV/Aids, though even here, as one service user said at a recent conference: "It's been difficult to persuade clinicians that we play a meaningful part in the determination of our lives. Somehow we've got to be asked and we've got to be listened to."
Nevertheless, we have probably moved on from the time when clinicians and other professionals viewed user involvement as an idealistic but impractical idea. Ann Crossley, regional chairperson of the Multiple Sclerosis Society, points out that professionals are more aware than ever of the importance of issues such as the management of severe pain, and how to give newly-diagnosed sufferers the right information in the right way. These developments might not have occurred without user involvement, she says.
It is being increasingly recognised that real user involvement not only assists service providers and commissioners, but can mark a profound change in the way patients or clients view themselves, and are viewed by professionals. Tricia Holmes, director of care development at the Motor Neurone Disease Association, says: "People living with MND have no control over the manner in which the disease progresses, and its impact. So it is important that they have control over how they live and the quality of their life."
Another proponent of user involvement, Jean Pounceby, head of the Cystic Fibrosis Advocacy Service (CFAS), endorses the benefits to patients and services. "People with chronic illnesses are the experts on their own condition, its clinical and treatment implications and the repercussions of these for their personal and social lives," she says.
The CFAS, which employs paid advocates, all of whom have cystic fibrosis, is now about to operate on a national scale with senior NHS officers on the planning and commissioning of health services for those with the illness. She sees this as one model which the NHS, and other agencies, should investigate if they're serious about user involvement of people with serious illnesses.
Other ways of making user involvement real, rather than token, are being developed. Peter Beresford, a veteran campaigner and professor of Brunel University's social policy centre for citizen participation, cites a recent event at which the majority of participants had life-threatening conditions.
This, he says, aimed to show that people normally excluded from conventional user involvement forums were, with the right support, able to attend and contribute. Their contributions also made it clear that some relatively simple procedures could ensure that socially excluded patients could have an effective voice.
So pressure is mounting to stop professionals and clinicians making unfounded assumptions about who wants to be, and who can be, involved in planning service delivery on either an individual or a wider basis. The government's NHS plan envisages the creation of a patient and advocacy liaison service. However, the jury is still out on whether this will address the fact that different individuals and service settings may require different approaches to user involvement. Also, it is not yet known whether the National Care Standards Commission will be able to bring socially excluded patients into the process of developing minimum care standards.
But as Beresford points out: "We've found that people with a terminal illness sometimes want to contribute to changes that will be in place after they're no longer here. They see it as part of their legacy to others."
Too Ill To Talk?
User Involvement and Palliative Care is available at pounds 15.99, plus
pounds 1.50 p&p, from Routledge (tel: 01264-343071).