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User involvement in care: avoiding tokenism and achieving partnership

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Jenny Buckley, MA (Nursing), RGN, RNT, Dip HE Palliative Care

Head of Education, St Wilfrid's Hospice, Chichester

People's perceptions of health care have come a long way since the days when many families kept money in the 'jar on the mantelpiece' to pay for a consultation with a doctor (Tony Blair, in the foreword to The NHS Plan, 2000). In the 21st-century NHS the law expects patients, carers and other stakeholders to be involved in shaping and delivering local health services.

People's perceptions of health care have come a long way since the days when many families kept money in the 'jar on the mantelpiece' to pay for a consultation with a doctor (Tony Blair, in the foreword to The NHS Plan, 2000). In the 21st-century NHS the law expects patients, carers and other stakeholders to be involved in shaping and delivering local health services.

This paper describes an example of good practice that involved service users to shape and evaluate services: patients with cancer at one trust were brought together in a focus group to write a policy for breaking bad news. The group evolved into a cancer forum, resulting in two important educational initiatives.

Times have changed since the first years after the NHS was created (Box 1). Far from being grateful and happy to follow 'doctor's orders', today's public expect a more equal role in their health care.

But critics of central and local government commitment towards service user involvement over the years suggest that, in many instances, this has amounted to tokenism as opposed to a genuine attempt to seek involvement.

Cooper et al (1995) highlights more instances of community health councils feeling marginalised than included. Whether or not these new initiatives succeed depends on three key factors: the understanding of effecting change in a large complex organisation; the involvement of staff at all levels; and the challenge of creating a public and professional consensus about the desirability of change.

The new system for patient and public involvement for England was set out in the NHS Plan (DH, 2000) and legislated for in the Health and Social Care Act of 2001 and the NHS Reform and Health Care Professions Act 2002 (DH, 2003) (Box 2).

Other political initiatives over the past 20 years have encouraged the public to take charge of their own health, such as Promoting Better Health (DH, 1987) and The Health of the Nation (DH, 1991). The Patient's Charter (DH, 1991) encouraged people to complain if targets and standards were not met.

The NHS Cancer Plan (DH, 2002) and The Manual of Cancer Services Standards (DH, 2000) both integrate patient involvement and consultation into the provision and evaluation of cancer and palliative care at all levels. Cancer networks have responded to the directives and have the potential to lead the way in public involvement at all stages of service.

A local initiative
Headed by its lead nurse, the Central South Coast Cancer Network established a Network User Involvement Group. A core of patients, carers and health-care professionals met on several occasions over several months as a group to discuss how it should run.

Many issues concerning service provision were discussed. It was tempting for health-care professionals, mainly nurses, to dominate, but as patients became more confident this changed, and the group chair is now a patient. Progress is being made on ensuring service user representation in the many networks and local groups and boards.

St Richard's Hospital, Chichester, West Sussex, is a 500-bed district general hospital working closely with a primary care trust (PCT) and providing services for patients with the more common cancers. Staff wanted to explore patient involvement in line with directives from the national cancer standards (DH, 2000). The first step was establishing the focus group to work on two projects:

- To compose a generic cancer patients' satisfaction survey. This project is ongoing

- To develop guidelines for breaking bad news. Some of the findings are presented here.

Both projects were linked with the trust's clinical audit department to avoid duplicating work. They asked patients for their advice and opinions, rather than asking them to ratify a finished document. Staff believed this would enable them to more fully reflect patient priorities. Selecting patients to ensure a representative group and avoid distress was a challenging task. The lead nurse asked the advice of others who had held focus groups. He did not want to risk approaching patients with no prior warning in case this caused distress and he wanted to ensure that patients from different cancer groups were invited. Each nurse specialist was asked to identify 10 patients who could be invited to join the group. They should be patients who have had a recent experience (within 16 weeks of completing their cancer treatment). They were asked not to simply suggest patients whom they particularly liked.

The aim was to recruit 10-20 people. Four specialties provided names and a group of 20 patients and carers was brought together. Some carers had also put their names forward. The group was supported by the PCT's cancer lead - a local district nurse - and several trust staff, including nurse specialists and customer relations representatives.

This paper uses both the terms 'patient' and 'service user'. While policy initiatives tend to refer to service users, our group preferred patients and supporters.

The group needed clear ground rules and clarity of purpose, so that it did not turn into a support group or become monopolised by individual issues. The nurse specialist members had to ensure any concerns raised were addressed to the appropriate part of the organisation, and to provide support outside meetings to patients if any distress occurred. Patients were told the focus group would be a short-term commitment. Work on the patient satisfaction survey is ongoing; results are available for the work on breaking bad news, outlined below.

A policy on breaking bad news
Focus group meetings have provided staff with a wealth of experience and differing views to underpin the guidelines. For example, the group discussed how doctors often find it very difficult to break bad news and therefore may seem remote.

The general view was that doctors should admit this to patients, and that most would understand. One patient wished the doctor had said how difficult it was because then they could have shared in the sadness together rather than feeling awkward.

Another issue raised was the use of private rooms to break the news. One patient said: 'I felt really anxious being taken off to the sister's office. I had never been there before - it was threatening. I had rather it had taken place quietly and sensitively at my bedside.'

The issue of not being mentally prepared was highlighted. Another patient pointed out: 'The last thing I was thinking of was cancer. I was sitting in bed enjoying my first breakfast for days when a nice young doctor arrived to tell me I had cancer and a short time to live. If I had known she was coming it might have helped; I had no chance to prepare myself for any news.'

The location and time spent breaking bad news seemed to be less important to patients than staff might believe. While it is not possible to do what is right for everyone, what matters to people is that they are treated with respect and courtesy and that those breaking bad news are able to demonstrate empathy and caring.

As a consequence the breaking bad news policy emphasises the importance of self-awareness and self-care as well as the practical aspects. The focus group did discuss practical issues, such as:

- Telling patients to bring someone with them to their outpatient appointment

- Telling patients to take a pen and paper to consultations with doctors

- Ensuring health-care professionals give patients and carers time to compose themselves before walking back out to the waiting room.

These are included in the policy. Implementing it means educating all trust staff, a challenging process that has stimulated valuable discussion between staff and patients. Patients have shared experiences with health-care professionals and consultant medical staff with more junior staff.

A cancer patients' forum
As the breaking bad news project was completed, it became clear that the group had evolved into a local cancer patients' forum; it was time to redefine the group. New terms of reference were established and a group member agreed to co-chair with the lead nurse. The group was named the Western Sussex Cancer Patient Forum, representing both the acute NHS trust and the PCT.

The PCT cancer lead had been a member of the group from its outset. Those who felt they did not wish to continue on a long-term basis were given the choice of opting out: two decided to leave. Several months and many meetings later, issues discussed include car parking, waiting-room facilities and providing information. Small successes have brought encouragement and greater acceptance from the wider organisation.

At present the forum has 15 members, with approximately 60% patients and 40% professionals.

Learning to live with cancer
Educational programmes have been set up as a consequence of the group's work. Central South Coast Cancer Network ran 'Learning to Live with Cancer', an eight-week structured course for people with cancer, relatives and friends. It was inspired by a programme called 'I Can Cope,' designed for the American Cancer Society.

Our programme was developed by Gertrud Grahn at the University of Lund, Sweden, and supported by the European Oncology Nursing Society (Grahn, 1996). It has run successfully in London and the Wirral since 1997, and is now being piloted nationwide. After a two-day training workshop, 14 people within the network were prepared to run the course in seven different sites; a patient member of the cancer forum and a local hospice nurse teacher ran the course in Chichester.

The content evolved from a needs assessment of patients with cancer; it looks at the pathology of cancer, treatments and side-effects, resources available to support patients, complementary and supportive therapies, and the future of cancer care.

The programme was advertised through posters and leaflets in local health centres and libraries, a newspaper article and a radio interview. Leaflets were left in oncology clinics and clinical nurse specialists and doctors in cancer care were asked to promote it by word of mouth.

The venue was a local college - a central point and neutral territory - and 20 people, mainly patients, but some relatives and friends, came on the first evening. It was stressed that this was not a therapeutic group but educational. The evenings began with an educational presentation, followed by discussion, usually about the content and related patient experience. Two or three people attended only selected sessions but most came to all of them. We gained three new people over the eight weeks, who heard about it from group members.

The fourth session, 'Talking About Cancer' was a chance for people to exchange their experiences of communication with health professionals in a structured way. It was eye-opening for the three health professionals present: almost all the patients had had negative experiences.

One had written a short play entitled The Polite Disease, which was acted out. The cancer lead nurse took the role of the doctor. After each searching question regarding prognosis or new symptoms, the patient was fobbed off with platitudes and tickings off about linking any new pain or discomfort to their cancer. At the end of each dialogue the patient replied: 'Thank you doctor.' The audience roared with laughter. But the poignancy of it was sobering. Now three members of the group and the nurse tutor are putting on a study day together, 'Tales From the Other Side', aiming to attract a multidisciplinary audience. After piloting the day as part of the local hospice education programme, we plan to offer it to local universities as part of medical/nurse training.

The national cancer standards (DH, 2000) gave services a lead in user involvement. The initiative described here was a genuine attempt to involve patients, with rewarding and exciting results, and a high level of commitment from patients and professionals. Forming partnerships between patients and professionals is a productive way of working that will reduce the need for patients' forums to take on an adversarial role.

- The Central South Coast Cancer Network is indebted to the help of the Cancer Voices team, led by the late Jeremy Gambril, in setting up the network's Service User Involvement Group.

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Department of Health. (1991)The Health of the Nation. London: The Stationery Office.

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Grahn, G. (1996)Coping with the cancer experience: developing an education support programme. European Journal of Cancer Care 5: 176-181.

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