Director of patients and the public Appointed: part time,  May 2002; full time, April 2003

My achievements

When the opportunity came to become director for patients and the public at the Department of Health it seemed a continuation of the 25 years I’d worked in special education, health, and social care. During that time I have become increasingly convinced of people’s ability to make their own decisions and manage their illness and of the way health and social care practice and research improves if patients and carers are actively involved.

The NHS Plan drives the NHS towards a really patient centred service. My role is to advise ministers and colleagues in the Department of Health and the NHS on how that might be achieved. The formal patient and public involvement structures, patient forums, and Patient Advisory Liaison Service, are a part of this, but the real issue is how we nationalise good practice in the way that millions of NHS staff and clinicians relate to patients and perform their work.

When you are inventing a job that no one has done before and which has no specific work programme, you have to be clear about your objectives. I aim to be an advocate and a catalyst for patient centred health and to support and work with the many people in the service who are already making this happen. I’ve had particular encouragement and support from my clinical director colleagues.

Since joining the department I have taken on two specific pieces of work. I have directed the national consultation on choice, responsiveness, and equity. The report from this was published in December (13 December 2003, bmj.com, News Extra). And I am preparing, with a group of experts, proposals on reform of the charging structure for NHS dentistry. Now that’s something to get your teeth into!

What have I achieved? It’s far too soon to answer that, and anyway, others must judge. But I feel more welcome than I had expected in a world where patients have sometimes been serfs not tsars.

What others say

Judy Wilson, independent consultant, patient and former chief executive of the Long-term Medical Conditions Alliance: Harry Cayton successfully bridges the patient and professional worlds, not an easy thing to do and fundamental to meeting the challenge of his position. The only "tsar" without the structure of a national service framework for his work, he is trusted and respected by both parts of the NHS.

His roots in the patient and carer world remain clear. His first achievement has been to retain all that he brought from his extensive experience there and to use it to underpin his work. His steadfast commitment to the importance of the views and needs of patients, users, and carers shines through.

His second achievement has been swiftly to gain the trust of professionals and managers. Nigel Crisp’s invitation to him to lead the recent Patient Choice consultation demonstrates the confidence of the Department of Health. The professional and managerial world, even if only measured by the large number of conference talks that Harry is invited to give, clearly respects him too.

His reiteration of simple messages that challenge but do not sabotage professionals’ work and attitudes is his third achievement. "Trust me, I’m a patient," "Tell me the truth," and "Nothing about us without us" are examples.

All three together add up to achieving changes in awareness, essential before many practical changes can take place. These are no doubt being planned. From my own recent experience as a patient, I hope that implementing the "copying letters to patients" policy and providing training for professionals in the skills they need are among them. But while his job is to lead change, in the end it is not Harry Cayton’s achievements that matter so much as changes we all make, as patients and as managers and professionals, to get a patient centred service that combines equity and excellence.

Elizabeth Manero, joint vice chairwoman of the Patients Forum: The Patients Forum greatly welcomes the role of the clinical director for patients and the public as recognition of the importance of patient and public involvement to the modernisation of the NHS. Harry Cayton has a distinguished record of speaking up for those who cannot speak up for themselves. However, we are concerned that the appointment of an individual in this role should not marginalise patient and public involvement as just someone’s job—it is the role of every person who works in the NHS. We know that Harry has been successful in getting patient representation on some national Department of Health bodies—the Hospital Improvement Partnership, for example, where it is unlikely that there would otherwise have patient representation. Unfortunately he has no formal role with the Commission for Patient and Public Involvement in Health, which is charged with delivering Patients Forums to generate patient and public involvement at local level. We would like to see him given some formal role with regard to the commission so that the work he does in the NHS is linked to the work it does outside it. This would be a more coherent approach than just appointing one individual. We feel that it is important to put patients at the centre of their care through the choice, responsiveness, and equity agenda and by raising the profile of involvement.

Maria Shortis, parent in the Bristol inquiry and chief executive officer of Constructive Dialogue for Clinical Accountability

Harry has an impressive track record of 25 years’ service to patients and is dedicated to promoting a patient centred ethos in the NHS. His motto "Trust me, I’m a patient" may not be a comfortable one for the NHS, but it is one that needs to be heard and respected.

Directing national consultation on patient choice and responsiveness is no small undertaking, and Harry designed, among other initiatives, an excellent online survey for patients and members of the public to engage in.

The challenges that Harry faces as the patients’ "tsar," with particular regard to patient choice, are enormous. The health secretary, John Reid, seems genuine in wanting to provide choice to patients, but the question has to be, what are the real choices available to patients and how realistic are they in terms of resources, and time, both for professionals and patients? How will patients’ expectations be measured against outcomes?

Harry has taken on a pioneering role, and his achievements will only be recognised in the context of continued culture change. At this stage he is a pioneer, but his perseverance and experience over the past 25 years will enable him to tread a clear path through the minefields of a politicised NHS, giving patients access to accurate information, increasing the quality of their "journey" as a patient, and encouraging them to take responsibility for their health care.