National Health Service

Baroness Pitkeathley Excerpts

Tuesday 17th June 2014 Grand Committee

[Baroness Pitkeathley (Lab)]

My Lords, there are few Members of your Lordships’ House who know as much as the noble Lord, Lord Crisp, about the NHS, so I am grateful to him for his focus on citizen and patient power—and indeed, carer power, which he mentioned, something with which I have been concerned for much of my working life. I declare an interest as the current chair of the professional standards authority, which prides itself on being patient-centred and public-centred and being a strong, independent voice for patients in the regulation of healthcare professionals throughout the United Kingdom.

However, I want to start with a personal experience about changes in attitudes to patient involvement. I started in the mid-1980s, when I was first diagnosed with cancer. A young registrar came to my bedside and, with no preparation whatever, told me that the tumour they had removed was cancerous but that I was absolutely not to worry because almost 40% of his patients made a full recovery. I gathered my wits and asked him what I could do to ensure I was in this 40% and he leaned across, patted my arm and said, “There is nothing you can do, my dear, just leave it all to us”. I think I got better to spite him.

Contrast that with my next experience in the early 2000s when, during a prolonged stay in hospital of over six months, nothing was ever done to me by doctors, nurses or therapists without seeking permission, asking if it was okay and what my view of it was. All right, you could say that that was about me being an assertive patient, which I am, and there not being many Baronesses on NHS wards. But, as far as I could see, the same respect and attempts to involve the patient were offered to every patient, regardless of their age, background or ability to communicate. Of course, the odd consultant swept in with an entourage and attempted to talk about me as though I was not there, but that was far from general. Therefore, my personal, as well as my professional and parliamentary experience, tells me that much progress has been made. I was very glad to hear the noble Lord, Lord Crisp, confirm that.

We all know about the reports that put patients first. We know their names and could write them in our sleep. We are all familiar with the phrases—patients first, patient at the centre, listen to patients and more patients. Yet patient involvement is not the same as patient power. “How far have we have really come?” is the question that we must ask ourselves, especially in the wake of the Francis report; patients manifestly had no power at all and those who blew the whistle on behalf of the patient—their carers and their families but not the professionals who should have been concerned—were not only not believed but ignored and vilified.

It is striking that, even with the emphasis we all embrace on patient-centred care, it is still on the whole the health professionals who lead and the patients who follow. That is in spite of the welcome growth in patients’ organisations in the voluntary sector, of which there are many, as your Lordships will know. I speak as a founder member of National Voices, which has made an important contribution in that regard.

The ideas as regards patient leaders were developed by two long-term service users, David Gilbert and Mark Doughty. They asked why patients cannot lead rather than always follow the professionals when it comes to power. With that in mind, they set up the Centre for Patient Leadership to give service users the skills and confidence to lead change and not just be the beneficiaries of it. We all know how disempowering it can be to be the only patient representative on a committee—we might say the token representative. Not only is there no one to support that representative, but they do not know how the committee will work. They would not have had any input to the agenda or any idea of what is expected of them, and so on. They would know that they are there to represent the patients’ interests but would not be sure whether to represent their own interests, those of groups of patients or those of patients with particular disabilities and so on. That is a very disempowering role in which we frequently put patients and their representatives.

However, patient leaders have developed the skills and confidence to lead change. They take control of changes and improvements in healthcare, and shape and help drive that change. They become real partners in care because they share power with professionals. I commend that approach because it helps both patients and professionals to see the benefits that can be gained in terms of patient care.

Power must go with responsibility. Patients must understand that they must keep their appointment times, must let someone know if they cannot attend and must take medication in the prescribed and agreed way. Giving patients power means professionals have to give some away. That is how the power balance works. We know that many are still reluctant to do that but there can be no let-up in our efforts to make progress in this area because of the benefits which can be gained, as the noble Lord, Lord Crisp, reminded us.

Finally, the noble Lord, Lord Crisp, tempted me to talk about carers. If you engage with carers and empower them, unbelievably, you get cost savings. All the research shows that they habitually ask for less support than the professional thinks is necessary. Progress towards that kind of empowerment makes very sound economic, as well as moral, good judgment.