National Health Service
(10 years, 6 months ago)
Grand CommitteeRead Hansard Text Read Debate Ministerial Extracts
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.
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.
Baroness Brinton (LD)
My Lords, I thank the noble Lord, Lord Crisp, for initiating this interesting debate on citizen and patient power. In the brief time available I want to focus on an issue that I believe is more likely to produce real reform in the NHS than many structural changes.
Before doing so, I must declare my interest as a patient with a chronic illness—rheumatoid arthritis—and it is RA Awareness Week, to get the plug in. I have some knowledge of my disease and its consequences and read up on treatments and their side effects. Later on I will talk a bit about the expert patient programme and it will be obvious that I am a convert to it.
First, however, let us go back 50 years. In those days, doctors liked the bedside manner approach, key to which was putting patients at their ease. It certainly was not intended to give patients more power in the NHS. The picture that comes to mind is of James Robertson Justice as the paternalist consultant, patting a patient on the knee and saying, “Don’t worry your pretty little head about it, my dear, that’s my job”—rather like the consultant mentioned by the noble Baroness, Lady Pitkeathley. The good news is that things have improved greatly, but sadly it is also patchy.
Empowering patients about their health issues and treatment seems to have been introduced first in chronic conditions, where a range of healthcare professionals are involved, and frankly, where it is in the best interests of the NHS to make patients more involved in their treatment, whether informally or in a more formal system such as the NHS expert patient programme. In April this year the Health Foundation published a thought paper by Dr Alf Collins, a clinical expert in pain management. This brief 12-page paper is well worth the read: it is a revelation. Right at the start the Health Foundation sets out its goals for,
“a more person-centred health care system. One that supports people to make informed decisions about and successfully manage their own health and care, including choosing when to let others act on our behalf”.
It goes on to say:
“This requires a change in behaviour and mindset from patients and clinicians, supported by a system that puts patients at its heart”.
Let me give you two brief examples of people that I know, to illustrate the difference between the more usual and traditional patient-reported outcome measure, versus the person-centred patient-reported experience measure.
Jane—not her real name—has a chronic disease with pain and fatigue. She is finding her new medication hard to manage, it is making her sick, and she is worried about managing her children and her part-time job. She goes to see her GP and bursts into tears, saying that the pain is excruciating, she thinks the medication is not working and she is at her wits’ end. The GP says, in a kindly way, that she wants to refer her to the mental health team for some psychiatric support. Jane goes home, absolutely convinced that the GP thinks she is mad and does not believe that she is ill at all. Jane's story is real; in fact, yesterday I read it on a bulletin board. The GP was focusing on the outcome. What could she do for this patient to help her instantly? There was a magic solution: a referral elsewhere.
Contrast that with another patient. It is the same illness with the same treatment, but all the healthcare professionals involved with her care ask her questions. The GP in this case asks about the side-effects and what she wants to achieve: does she need time off work, or medication to reduce the nausea so that she can continue to work? She is reminded that depression is a common issue for people with this disease, especially for people with her side-effects at the moment. Does she want further help? The patient consultation lasts exactly the same time, but the latter patient walks away with reassurance, knowing that if she needs more help it is available, and with a prescription for the nausea so that she can try to stay working, which should also help to reduce the depression. This, too, is a recent story—it is mine.
The latter is a patient-reported experience measure and is great for the patient. It is worrying for commissioners, though, because most commissioning is based on clear, achievable outcomes—referrals, medication, operations—rather than the softer and qualitative experience measures. A typical NHS expert patient programme provides patients help with dealing with pain and fatigue; relaxation techniques; healthy eating and exercise; how to communicate with their family, friends and healthcare professionals; and how they can best plan for their future.
Research into expert patients shows that they need fewer interventions, are less anxious, more confident, can communicate better with healthcare professionals, take less time off work and are less likely to suffer acute episodes requiring expensive admission to hospital.
I agree with the noble Lord, Lord Crisp, that England may well be ahead of the curve. A French consultant gave a Gallic version of James Robertson Justice to my mother-in-law just last year, even though she is a retired nursing sister with 40 years’ experience of the NHS and speaks fluent French. What I like about Dr Collins’s paper for the Health Foundation is that it sets out clearly for healthcare professionals how they can move to this different mindset. What is particularly encouraging is that it really helps patients and saves money. What is not to like? Let us hope that this is the sort of thing that moves us to real patient empowerment in the future.
Baroness Masham of Ilton (CB)
My Lords, I thank my noble friend Lord Crisp for obtaining this debate and for all that he does in promoting better health globally. I have heard the Government say so many times that we should have a patient-centred NHS, but two weeks ago, when I chaired a session at the Westminster Health Forum, one of the delegates brought up a problem that some commissioners are not co-operating and working with the third sector, which did not feel welcomed. It is important that everyone working for the good of the NHS should work together and communicate with one another. The NHS should appreciate voluntary organisations for all that they do.
This year, we celebrate the 40th anniversary of the Spinal Injuries Association, which is a self-help organisation. I quote a rhyme:
“Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall;
All the king’s horses and all the king’s men
Couldn’t put Humpty together again”.
I feel that we who are spinally injured, resulting in paralysis, are Humpty Dumpties. Across the world, expert neurologists and orthopaedic surgeons have not been able to mend or regenerate the spinal cord. Our full members of the SIA are spinally injured people, but we work together with our associate members. We always felt that the voice of our members should be heard and not diluted by others who had not experienced being paralysed and all the difficult consequences that follow.
SIA does its best to support its members. It publishes information, trains lawyers on the needs of paraplegia and works with interested professionals. It has a library, peer support for new members and a helpline. It campaigns for the much needed specialist services. There is also a parliamentary group.
There is a need for ongoing research so that one day a way of mending and regenerating the spinal cord will be found. We are vulnerable Humpty Dumpties. We have unfortunate accidents too easily. I have broken my legs in three separate incidents, including one getting stuck in a fire door in your Lordships’ House. More recently, last Tuesday, my friend and colleague, the noble Baroness, Lady Wilkins, went to use a lift in another place. The lift was not level, with a substantial drop on the inside. The noble Baroness did not see this and fell from her wheelchair. She was picked up by two Members of Parliament. Not knowing whether anything was broken, she went to the Charing Cross A&E department at about 10 pm. She was not seen until about 3 am, by which time her condition had deteriorated, and she was not in bed until 5 am. The clerk who took details in A&E, when told that the noble Baroness is a paraplegic, had said, “What is that?”. Unfortunately, the noble Baroness has fractured her femur and both legs. There are complications from being paraplegic and having weak bones with a Humpty Dumpty body.
I give this as an example of how important it is that citizens and patients are given more power in the NHS so that their needs are heeded and understood and that specialist services are available when needed. There is a desperate shortage of spinal beds at the moment, especially at Stoke Mandeville Hospital.
As a citizen, the noble Lord, Lord Fowler, is an advocate for people with HIV/AIDS. He has just written a book, AIDS: Don’t Die of Prejudice. The Patients Association, of which I am a vice-president, is about to launch its “one million voices” campaign concerning what the public think of the NHS. Relatives did speak out about the disastrous situation at the Mid Staffordshire NHS Foundation Trust, but they were not listened to. How are the Government going to change the culture of professionals not listening to worried people? There should not be fear of giving citizens and patients more power in the NHS. They are the people who can change attitudes and will support the NHS.
Baroness Murphy (CB)
My Lords, none of us can listen to the noble Baroness, Lady Masham, talking about the noble Baroness, Lady Wilkins, without being moved and horrified by her story. It is indeed a very sad reflection of how, not only occasionally, patients can be treated quite appallingly in the NHS, and I speak as somebody who has worked in the NHS all my life.
There seem to be three sorts of power relations in the NHS. We have been making enormous progress in some of the areas that the noble Lord, Lord Crisp, outlined, as mentioned by the noble Baroness, Lady Brinton. We have thrown ourselves at developing patient involvement groups, voluntary organisations and pressure groups, encouraging them to get involved and to try to change the agenda of the NHS to being more patient-focused. Shifting the perception of clinical outcomes to patient perception outcomes is of course crucial.
We have had the major initiatives on personal budgets, which are very positive, and we have also had, for example, NHS Choices websites, where you can now, TripAdvisor-fashion, comment. I know that GPs take that seriously because I had an e-mail from my own GP in Norfolk—he e-mailed every patient, I might add—saying that he was having difficulty recruiting a partner. He was worried that his ratings on the NHS Choices website were not very good for the practice. He asked whether, if any of us had had good experiences, we would like to comment, which of course we all did. He is now one of the top-rated GPs in the whole of Norfolk. I approve of having a TripAdvisor-type website but we must not take it all too seriously. We have to find other ways of having real surveys.
These sorts of patient powers where groups of patients make a difference, and citizens make a difference through enabling groups, are a substitute for the other, more important power which comes through knowledge of the expert patient and indeed through knowledge from the web. Certainly, there has been a dramatic improvement in people’s ability to access really good information on websites. For example, you can now get cancer information from Cancer Research UK in a very accessible fashion and from the websites of other voluntary organisations. Macmillan has a wonderful website, too. I typed into Google “patient power”. When you do that, you get a wonderful American website run from Seattle which gives information. When my husband was recovering from prostate cancer, I remember that the most important information we got about the rehabilitative phase came from an Australian website called “You Are Not Alone”. It was about men talking about how they managed and it was absolutely wonderful. There was even a section where wives, spouses and partners could comment, which was great.
I want to talk briefly about the other structural problem. This is where I will tread in very dodgy waters and no one will like what I have to say. It probably refers only to access to GPs and A&E. There is a structural problem caused by there being apparently no relationship between what we pay for and what we get. Of course, the vast majority of the population understand that we pay for the NHS out of our taxes, but it is desperately remote. Staff still behave as though they were a charitable clinic dishing out paternalistically to the grateful masses.
The question arises of how we get patients to act more like consumers when they often feel very vulnerable. They also need to feel that they have a stake. I remember being extraordinarily impressed when I first went to the States. I am not by any means praising United States’ healthcare to the roof, but because people have to pay for insurance or care at point of access, Americans have a deep and abiding interest in their own health and that of their children. I remember meeting young women who were my age and being extraordinarily impressed by what they knew about their own health.
We are one of the very few countries where the relationship between us and the GP or doctor in A&E is one of supplicant and provider. It is because we do not make a small direct charge. Let us face it: there are charges within the NHS although not many people pay them. A small contribution for access would make a difference to how you are likely to perceive your immediate relationship with a doctor or nurse. Most people now use private chiropodists; even those who have very little money. They go along to a foot care place run at a supermarket or in Boots and get direct treatment. They do not wait for an NHS chiropodist these days: they organise it themselves. They feel that they are getting the service they make a contribution to and that they are making a choice.
I know that this raises enormous concerns, but we are now in a minority of countries in western Europe and in liberal western democracies that do not make that charge at the point of access. That discourages people. It diminishes and belittles what they need to know to look after their own health and shifts the power base too far towards the professionals who deliver it. We need a little bit of patient power through a little bit of a contribution. It is politically very unpopular, but I believe that it would make a difference just as it does in the way you feel about going to see a doctor in western Europe. It is quite different from how you feel when you go to see one in Britain.
Lord Hunt of Kings Heath (Lab)
My Lords, it is a great pleasure to wind up on this side and to respond to the noble Lord, Lord Crisp. I am sure that we are all very grateful to him for the work that he has done and the initiative that he has taken today. I very much echo his point that there seems to be a global movement in health where there has been a move from what he described as professional development to patient and citizen development. That is to be warmly welcomed. He also referred—and the noble Baroness, Lady Murphy, backed him up—to the power of technology. None of us has really woken up to the impact that technology will have in the future and its ability to give individuals much more control over their own destinies. We are just on the edge of a revolution that will force the pace of change, even in the most conservative reaches of the health service.
Early this morning, I was at a meeting of regulators to discuss whither the Law Commission Bill. It was interesting that the chief executive of the GDC referred to one of its new roles as being to pick up complaints from patients on Twitter when they had just been to a dental surgery. That was an interesting illustration of how we need to change to adapt to new circumstances.
The noble Lord, Lord Crisp, also made the point that our main clientele for the future will be people with complex conditions, yet we still seem to find it very difficult to organise services around those patients. A recent paper by the NHS Confederation looking at the challenges for 2015 says that,
“the health service largely operates as it did decades ago, when the predominant need/expectation was treating episodic disease and injury rather than providing long-term, often complex, care”.
I have been very interested in the work of the Royal College of Physicians in looking at the new hospitals of the future. Essentially it is saying that we need to build those hospitals around people who have complex conditions and that, instead of the ever increasing drive towards specialisation, we need general physicians to look at the patient in the round. The question I put to the noble Earl, Lord Howe, is: to what extent can the Government encourage the health service rather to re-engineer some of its services so that it is built round the patient, particularly the patient with complex health needs?
My noble friend Lady Pitkeathley referred eloquently to carers and the noble Baroness, Lady Brinton, made very good points about expert patients. My noble friend used the term “patient leaders”; I would love to see more on that idea and I hope that the Government can give some support to it. The noble Baroness, Lady Masham, referred to the very unfortunate events concerning one of my noble friends. The problem with that is that the noble Baroness herself has experienced similar issues, so these are lessons that we have to take to heart.
On the structural issue raised by the noble Baroness, Lady Murphy, I understand the point that she is making about consumers having a stake. She referred to charges and then made the point that not many pay them. This is always going to be one of the issues about charges: their administrative complexity and the fact that the people she is trying to get at are those who will probably not pay because, one way or another, they will be given a dispensation. In any case, I gently remind noble Lords that, whatever the faults of the NHS, in its latest 2014 comparator of all the wealthy healthcare systems in the world the Commonwealth Fund has today moved the NHS up to number one from number two. There are obviously lots of issues relating to the ways in which it makes those comparators but this shows that we have something going for the service. If we could only add more patient involvement, it could be a very fine service indeed.
I ask the noble Earl three things. The noble Lord, Lord Crisp, mentioned the citizen but other noble Lords did not really follow him. However, I wonder whether the noble Earl could, in three ways, encourage more involvement of the citizen in health decisions in the future. First, in relation to Healthwatch, can he say how far it could be encouraged to move beyond the individual patient issue to acting as, perhaps, a representative of the public when it comes to problems with health systems in its patch? This is a real issue in the current, fragmented health service: it is very difficult to find out who is in charge and Healthwatch can play a role.
Secondly, perhaps I may raise the issue of foundation trust members. I think that well over a million people could, one way or another, count as members of foundation trusts. We have not yet made enough of their own role in holding the people who run foundation trusts to account. For instance, my own former trust had more than 100,000 members and I always thought that was a powerful way of letting patients get through to the heart of decision-making in a trust.
Finally, I come to clinical commissioning groups. I admit that I am waiting for the first letter to be received from my own CCG saying that it is in business and feels somewhat accountable to the public. CCGs may have set up token patient groups but I do not get a sense that they feel accountable to the public. I want to hear more about how we can encourage CCGs to do that.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, I am delighted that the noble Lord, Lord Crisp, has raised this important topic for debate this afternoon. I would like to thank him for sharing the report on patient empowerment by the six all-party parliamentary groups to which he referred, which I read with great interest.
Giving patients more power in the NHS involves concerted effort at every level: national, regional and local and, perhaps most importantly of all, in the consulting room itself, in the one-to-one conversations between clinician and patient. As the noble Baroness, Lady Pitkeathley, pointed out, the terrible events at Mid Staffordshire show what can happen when patients have no power at all. The deeply unfortunate experience of the noble Baroness, Lady Wilkins, as recounted by the noble Baroness, Lady Masham, is a further example. As a Government, we are committed to putting patients genuinely at the heart of the NHS, to giving them the information, tools, support and care to help them get well and stay well and to give real life to the commitment in the NHS constitution on that theme.
Involving patients and the public in health matters is something that the Government, my department and our partner organisations are firmly committed to. Indeed, there is a general consensus that patients should be at the heart of the health system and that putting the patient first needs to be made a reality.
Ensuring that patients have more say in how their care is delivered and embedding choice are key themes in the Health and Social Care Act 2012, to ensure that we genuinely put the patient first and drive improvements in quality. As part of that, involving patients and ensuring that there is “no decision about me without me” needs to become the norm, not the exception. The same applies to the very apt question, “What matters to you?”
We are passionate about ensuring that people have every opportunity to have their voices heard; that people have the opportunity to shape the services that affect them and their families; and that they are empowered to make decisions about their own healthcare and management. That is why we want everyone to be able to make informed choices about health and social care.
The noble Lord, Lord Crisp, asked me to endorse the principle of patient empowerment, which I readily do. We know that empowering patients and citizens is key to ensuring that health services meet people’s needs, that people have a better experience of care and are able to take better care of themselves; all of which—as the noble Baroness, Lady Pitkeathley, pointed out—will help to sustain the system itself, a system in which we all place so much value.
My noble friend Lady Brinton referred to the need to measure the patient experience, not just patient outcomes, and of course she is right about that. There are a number of measures for collecting information about different aspects of patients’ experience. One way of doing that, which is supported by various parts of the health system, is a validated measure devised by Warwick University.
To do all this it is vital that we understand what patients want from their care. There are a number of ways in which we do that. One in particular can be mentioned; namely, that we have received over 2.5 million responses to the Friends and Family Test in inpatient and A&E settings. That is proving to be a really useful tool in shining a light in almost real time on patient experience.
Patients must be given the chance to be as involved in their decisions about their care as they wish to be. We know that there is an appetite among many people to be more involved in their care than they currently are. Involved patients are in a far stronger position to manage their own healthcare, resulting in improved patient outcomes, a reduction in unnecessary consultations, improved patient experience and better use of resources. This is not a new agenda, and already a lot of progress has been made.
The noble Lord, Lord Crisp, asked about patient decision aids. NHS England is updating the patient decision aids as part of its work to establish a sustainable model of PDA which is underpinned by clinical leadership and partnership with organisations that can stimulate patient use and clinical buying in. Research shows that the tools need to sit within a wider system amenable to partnership, with patients and shared decision-making with clinicians as the norm. Patient decision aids comprise a shared decision-making website. That allows patients to plan their healthcare pathway. As for NHS England, the NHS Citizen programme seeks to put the patient voice at the heart of the decision-making that NHS England itself undertakes. That is a commitment from NHS England.
I am struck by how much engagement has taken place throughout the healthcare system in the past year, with a diverse range of people and organisations: patients, carers, the public, the voluntary sector, social enterprises and the community sector. It is important that we get this right, and we must engage the support of the public and other stakeholders in doing so.
The noble Baroness, Lady Pitkeathley, referred to carers as citizens, and of course I agree fully with her. It is important to gather the views of carers through a number of feedback mechanisms, including the Friends and Family Test and the GP Patient Survey. We have to understand the particular needs of carers to ensure that we can tailor the support that is required. NHS England will be publishing commitment to carers this year.
Of course, if we are serious about putting the patient first, that involves much more than giving patients and the public a chance to shape the services, although that issue should not be overlooked. The noble Lord, Lord Hunt, asked whether Healthwatch England was making a difference. We can now see the role of Healthwatch England making itself felt, ensuring that people’s experiences and views about their care and treatment are listened to and acted on. It is providing worthwhile leadership, support and advice to the local Healthwatch network, which is promoting a local consumer voice.
The noble Baroness, Lady Pitkeathley, referred to the patient leaders concept. The Care Quality Commission aims to involve people who use health and social care services in everything it does. For example, Experts by Experience takes part in inspections of health and social care services and visits to monitor the use of the Mental Health Act. Furthermore, NHS England has invested a significant amount of effort to improve the way in which it supports people to manage their own care. There is a number of core programmes, such as personalised care and support planning, so that people with long-term conditions and disabilities can work together with their health and social care professionals. Personal health budgets will give people more choice and control, and sites have now been chosen for piloting personal health budgets for people with mental health conditions.
The noble Lord, Lord Crisp, referred to the benefit of empowering patients to ask more questions. The key to giving patients more power in the NHS is the provision of high quality and accessible health information. Already, NHS Choices helps to put people in charge of their healthcare. The noble Lord, Lord Hunt, and the noble Baroness, Lady Murphy, referred to technology. NHS Choices also includes a health apps library spanning a whole range of lifestyle and clinical conditions to help people choose apps that are safe to use. As part of NHS England’s work to give patients access to their records, the Patient Online programme’s accelerator sites will be testing how that is impacting on patients and clinicians. That represents a real shift in emphasis and the relationship between patients and professionals, so it is important that we test it out first. It is about doctors trusting patients to use information responsibly. Having said that we need to test it, the principle of giving patients practical ownership of their records is surely right, and I think that that work will provide the foundation for that. Of course, we would like to move faster with this critical agenda, but it is important that we do this at an appropriate pace to bring people with us and to learn lessons from trying out new ideas.
Let me pick up the theme that my noble friend Lady Brinton spoke to so powerfully. We must not forget the importance of supporting the workforce. Some are already doing an excellent job in involving patients in their care. But more widely, the right medical education and clinical training needs to be in place, because by empowering health professionals we can empower patients. The NICE standard on patient experience defines best practice in this area and provides evidence-based statements for commissioners to support a cultural shift towards a truly patient-centred service.
I am pleased that NHS England together with other organisations across the health, social care and voluntary sectors has formed a coalition, the Coalition for Collaborative Care, to make person-centred care a reality for people living with long-term conditions. Furthermore, a key part of increasing the involvement of patients in their own care is being able to measure the skills, knowledge and confidence that people have that predispose them to be able to manage their own conditions better. As the noble Lord, Lord Crisp, said, diabetes is an excellent example but we must also think in terms of more complex conditions, as the noble Lord, Lord Hunt, rightly pointed out. Working in partnership with the Health Foundation and the King’s Fund, NHS England is piloting the patient activation measure in five CCGs and the renal registry. This is an exciting development. It is a score based on patients’ responses to 13 questions that include measures of an individual’s knowledge, beliefs, confidence and self efficacy. It has the potential to drive real improvements in participation.
Finally and importantly, the move to a new health system, including the transfer of the public health function to local government, has created the potential for action on health and health inequalities to be centred on people and places. I am delighted to see how Public Health England and NHS England are working in partnership. With Healthwatch championing the needs of children, young people and adults, the health and care system as a whole is working together to make things better for everyone, especially the most vulnerable in our communities.
There are a number of points that I feel I should pick up, but in view of the time I hope that noble Lords will allow me to write to them on those points. In saying that, I would like to thank all speakers for their contributions to what has been a very fruitful debate.