National Health Service

Lord Crisp Excerpts

Tuesday 17th June 2014 Grand Committee

Asked by

[Lord Crisp]

To ask Her Majesty’s Government what plans they have to give citizens and patients more power in the National Health Service.

[Lord Crisp (CB)]

My Lords, I am very glad to have the opportunity to initiate this debate and I am very grateful to noble Lords who are taking part. I am looking forward to hearing what they have to say. People are coming from a range of different backgrounds and experiences, which should be very illuminating. I am also conscious that the Government have already said a great deal about patient empowerment and patients taking a greater role. Therefore, to some extent I am pushing at an open door in this debate. I am trying to make sure that the progress being made is accelerated and that specific things happen to change the dynamic.

We are talking about one of the most important things happening in health over this decade. I know that discussions about patient and citizen empowerment have been going on for much longer than that but there is a building global momentum. Most noble Lords will know that six all-party parliamentary groups have recently published a report on patient empowerment in which we looked at the global picture as well as the UK picture. I will come back to that.

The UK is part of, and can be a significant leader in, what is happening globally. There is a change from everything within health and healthcare being defined by the professionals to things being defined much more by the citizens, the public and the patients; that is, everything, including what quality consists of in healthcare, being defined much more by the patients, the citizens and all of us, involving of course the professionals.

I have a confession to make. As the NHS chief executive for some years I, like lots of other people, said that patient empowerment was a top priority. But in reality, although we said that for a number of years, not a great deal has happened in this area. As I will say in a moment, I think that England is ahead of much of the rest of the world, but there is very much further to go. We all said it because we were sincere about it, but we did not well understand how to make it happen in reality. It is now beginning to be well understood. I think that people can understand how to make the change. Of course, we now have technology and science that is literally putting things into patients’ hands in ways that enable them to be more empowered as patients and citizens.

I deliberately included patients and citizens in the Question, recognising that both are the same people. I wanted to draw attention to the fact that patients have particular roles but there are particular roles for citizens as well. I mean the whole range of citizens, including the very important group of carers, whom I suspect we may hear more about in due course.

Before turning to the specific all-party parliamentary group report and its recommendations, which I will ask the Minister about, I will say a few things about citizens and why it is really important that citizens have more power. I will give three reasons although there are others. There is enormous epidemiological change going on, as every Member of the Committee will understand as well as I do. We are moving towards a world where the biggest issues facing us are non-communicable diseases. As we all know, those will be significantly affected by people’s behaviour. People themselves will be part of the problem and part of the solution as well.

However, this is not just about individual behaviour but about societies and serious changes in society. Programmes are developing across Europe that come under the title of “Health in all Policies”, which are about making sure that education, employment, commerce and every other part of society has a role to play in improving health and in not damaging health. Over this parliamentary Session, we will no doubt see examples such as discussions about the impact of sugar on people’s health. Wider society has a significant role in improving health. The best estimate that people make is that health services contribute about 20% to our health improvement and wider society contributes about 80%. That in itself is an argument for citizens being much more empowered within our NHS.

The second argument is about carers, which I will not dwell on very long. The last time I looked at the figures, if you monetised the informal care systems and attempted to estimate their value in cash terms, the amount that they contributed to England was roughly equivalent to the total cost of the NHS. As we all understand, if those informal systems were to fail for whatever reason, the burden would fall on the NHS. If those informal systems were to be strengthened, as they should be, that would help the formal health system to become more sustainable. We need the engagement of carers and citizens as carers—and most of us will be carers at some point in our lives—within the NHS for its continuing success.

However, this is also about democracy, values and priorities. Here in England and in the UK, we have had in recent years debates about the future of the NHS—what it is and what its core values are. Those will no doubt continue. For all those reasons—the epidemiological, the role that informal care plays in our society and democracy—it is fundamental that citizens have more power. It will be interesting to hear what the Minister has to say about that.

I turn specifically to the patient empowerment review. First, I put on record my thanks to the many people who contributed from six all-party parliamentary groups and to Meg Hillier MP, who chaired the review. As we noted in that report, the NHS is ahead of the field in many ways. There are many good examples, from personal budgets to expert patients’ programmes and so forth. The NHS has been moving, but it has not yet reached a position where this is central to where the NHS is and wants to be. As we noted in the report, there are many good global examples as well. Those come from low and middle-income countries as well as from rich countries. Our simple message in the report is that we need to give renewed emphasis and investment to patient participation to improve health, satisfaction, quality and sustainability.

Let me touch briefly on two examples which illustrate that very well. The first is the pure and simple example of diabetes. A patient with diabetes—a person with diabetes—may be involved in something like 500 hours a year of self-care, but have only two 15-minute sessions with a professional. It is just as important that those 500 hours, or however many they are, are handled well and appropriately to improve health and, indeed, keep pressure off the formal health system.

I turn to satisfaction and quality. Maureen Bisognano, who is president of the Institute for Healthcare Improvement in America, has a very good expression about what the future should look like. The question between the clinician and the patient has often been, “What’s the matter with you?”. She says that the future question should be that, but also, “What matters to you? What are the things that you need in terms of your request for help, if you like, from the National Health Service?”. She makes the very simple point that most patients have complex conditions. If you have something such as Parkinson’s disease, you may have many different symptoms and, therefore, many different things that can be done to control them. It should be about your choices, not just the clinician’s choice. “What matters to you?” seems to me to be the watchword for the future.

My questions for the Minister are, first, of course: what are his plans, as the title of the Question asks? Secondly, I would like his response to the modest four recommendations that we make in the report. The first is that patient empowerment should be a top priority and that that means that all the systems and incentives should be aligned behind it to make it happen—something we have not done satisfactorily in the past. The second is to ask whether the Government will revive the revolution that was started in decision-making tools earlier this century. Decision-making tools are about helping patients to be able to make shared decisions with their clinicians. That is the area of “What matters to you?”, which I just talked about. The third is to ask whether the Government will give patients co-ownership of their records, by which I mean that they should own their health records. The only other co-ownership should be that the anonymised information is available for research. That is where we were coming from as an all-party parliamentary group. We see no reason why patients should not just have access to records—why should they not own them? Fourthly, what are the Government going to do to encourage patients to ask more questions and support them? That happens in some countries: the example we give is Denmark, which has a programme called Just Ask about encouraging patients to do just that.

With that list of questions, I am delighted to have the opportunity to initiate this debate and look forward very much to hearing what noble Lords have to say.