Patient care (empowerment): a local view

The prime minister's proposal to draw up a national plan for a National Health Service sets out five challenges to health service professionals—on partnership, performance, the professions, patient care, and prevention. As a former health and social services employee now working for an advocacy organisation I would like to make five suggestions which would empower patients in their dealings with health services.

Summary points

• Joint working between health and social services needs to supported by real joint funding

• The NHS should support advocacy services because not all health professionals are able or willing to take patients' views fully into account

• Health professionals too often deny patients a real say in their care, and are often very skilled in disempowering patients

• Just as clinicians need training in working with all types of patients, so patients need support in playing a full part in consultations

Real joint funding

Since the introduction of community care the term seamless service has been much bandied about. There are even some social services departments located in the same building as health boards. But does this mean that the service user receives a seamless service delivered by professionals who work in partnership with each other? Unfortunately joint location and joint documents and guidelines do not always mean joint working at the point where it matters—the service user. There is still a culture difference and a disparity of funding between the health service and its poor relation, social services. For the user in need of a complex care package this can pose serious problems. The funding issue aside (resources are always going to be an issue), the service a user receives depends entirely on the personality of the professionals involved and the local politics of the day. In other words, it's a lottery.

ULRIKE PREUSS

The partnership challenge will work only when there is real joint funding. Service users who do not qualify for social services because they are not in the right category will inevitably end up as NHS patients. Surely prevention is better and cheaper than cure.

Advocacy services

Independent advocacy services can help to speed up communications and help users to explore options. Iain Gray, deputy minister for community care in Scotland, said recently that he expects “health boards (in Scotland) to adopt a proactive approach to the provision of advocacy services in their area in partnership with local authorities and other agencies.” Service users need professionals who have the time, energy, and empathy to listen to them; to get the whole story; to see them as individuals with complex needs.

In an ideal world service users would receive this kind of service from general practitioners, consultants, nurses, social workers, and therapists. Unfortunately, sometimes because of lack of resources but more often because of bad communication, wires get crossed, people are not taken seriously, and users are left wanting. Advocacy services should be delivered by accredited, independent, trained volunteers, who can give the time required to listen to people and then help them in a practical way in their dealings with the health service. I'm disappointed that the prime minister left the voluntary sector out of his speech when he spoke about partnerships. The voluntary sector should no longer be seen as the tea and sympathy brigade but as equal partners in delivering a quality service.

Real accountability

The prime minister talks about best standards and rooting out poor clinical practice. The Scottish Office white paper, Designed to Care, announced the intention to introduce a patient centred health service.¹ This paper talked much about patients being put first, being partners with professionals, and having more say in the planning and designing of services. Many other government papers talk about the same things. There are clinical guidelines and committees and the General Medical Council all working hard to improve clinical standards and patient care. But what does the patient see at the end of the day? (I make no apology for concentrating on the negative here. I know there are health service employees all over the country working very hard.)

PHILIP WOLMUTH

Patients see complaints procedures which are not working for them. They hear medical directors saying, “Advocacy is OK for people with a mental illness but generally it is not necessary” or “It is very difficult to know how much information to give patients as too much may put them off having necessary surgery.” They see general practitioners who do not follow the guidelines for removing patients from their lists or who say, “Only one problem per consultation, save the rest for next time.” They see clinicians being dismissed from one trust only to be employed by another.² Sometimes the treatment patients receive will depend on whether the clothes they wear come from Marks and Spencer or from Oxfam. Assumptions are still made if a patient is not within the right social class, and decisions are made based on whether the doctor sees a patient as a worthwhile person—that is, worth spending money on. I have spoken to junior doctors who have admitted that they have not heard of clinical governance, let alone understand what it means.

Yes, patients want to see high clinical standards, but as well as wanting clinicians who are highly qualified and skilled they also want to be treated with dignity and respect, and all too often this is lacking. Certainly there are patients who do not want to take part in shared decision making or take responsibility, and they should be treated in a way that suits them, but their numbers are dwindling rapidly.

I have yet to see a chief executive take real responsibility for clinical governance. In February Alan Milburn, the health secretary, announced regulations to give health authorities the power to initiate the immediate removal of general practitioners from their lists if they are convicted of murder.³ That's reassuring—but what about plain bad practice? Does any other profession have this amount of power and protection? If power corrupts, let's take it away.

A recent correspondent to the BMJ wrote: “It is wrong to assume that doctors letting go of some of their power and encouraging patients to be partners will be more time consuming. It should lead to much faster shared understanding, greater patient satisfaction, and improved health outcomes.” I couldn't agree more. He went on to say, “The concept of patients as partners is far from political correctness gone too far; it is essential for efficient doctor-patient consultations, in which mutual understanding leads to rapid diagnosis and negotiated treatment options that are thus more likely to be adhered to.”⁴ If only all professionals understood the concept as clearly as this.

Training for clinicians

Obviously, current training is insufficient if patients are still feeling patronised, not listened to, not taken seriously, and turning to advocacy services. Awareness training about personal discrimination, prejudices, labelling, and power bases and skills training in communication and empathy would be a positive step towards improving the quality of service the patient receives. Many clinicians reading this will disagree that they need training in these aspects of practice—yet I see proof every day that many of them do. Indeed, some are very skilled at disempowering patients. They should remember that access to the NHS is a right—not a privilege. Patients are entitled to receive health care on the basis of clinical need.⁵

Effective patient involvement

The third, fourth, and fifth of the prime minister's challenges (on the professions, patient care, and prevention) expect the professions to make changes including introducing flexible training, changing working practices, introducing convenient booking systems, and developing a more systematic approach to treating people at risk from chronic disease. Nowhere in these particular challenges do I see the words “public involvement.” Convenient booking systems for whom? A systematic approach to treating people at risk from chronic disease—in consultation with users, I hope? As long as trusts think that simply including their hospital chaplains on their clinical governance committees means public involvement we have no empowerment for patients.

Fundamental changes to a service which all the general public (including clinicians) will use at some time in their lives should be undertaken with more than token consultation. Much has been written about patient panels, forums, and focus groups and their effectiveness. Who should be on them? What are their training needs? What are the resource implications? They can work if they are set up and supported properly. The feedback they can potentially give to trusts and general practitioners is a valuable resource that is simply being wasted at the moment. But again, it is the attitude and personalities of the professionals that will decide whether patient panels will be successful. Ultimately we are all members of the public, and the perception of some clinicians that their profession makes them special people in our communities has to be addressed.

Patients too need to realise that with rights come responsibilities. Involving them effectively, whether through consultations, at local community level, or through representation on the General Medical Council, must be a positive step forward. The prime minister states in his proposal that he will meet and talk to the people responsible for healthcare and will consult the leaders of the professions and the health organisations. What a pity he seems to be forgetting to ask the one body of people at whom the service is aimed—the patients.

See also p 1660