Publications on the internet
UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE
To be published as HC 436-ii
House of COMMONS
TAKEN BEFORE the
MANAGEMENT OF LONG-TERM CONDITIONS
WEDNESDAY 16 October 2013
PRoFESSOR ALAN SILMAN, BARONESS YOUNG OF OLD SCONE and DR PETER AITKEN
DON REDDING and LIZ McANULTY
Evidence heard in Public Questions 72 - 148
USE OF THE TRANSCRIPT
This is an uncorrected transcript of evidence taken in public and reported to the House. The transcript has been placed on the internet on the authority of the Committee, and copies have been made available by the Vote Office for the use of Members and others.
Any public use of, or reference to, the contents should make clear that neither witnesses nor Members have had the opportunity to correct the record. The transcript is not yet an approved formal record of these proceedings.
Members who receive this for the purpose of correcting questions addressed by them to witnesses are asked to send corrections to the Committee Assistant.
Prospective witnesses may receive this in preparation for any written or oral evidence they may in due course give to the Committee.
Taken before the Health Committee
on Wednesday 16 October 2013
Mr Stephen Dorrell (Chair)
Grahame M. Morris
Dr Sarah Wollaston
Examination of Witnesses
Witnesses: Professor Alan Silman, Medical Director and Director of Policy and Health Promotion, Arthritis Research UK, Baroness Young of Old Scone, Chief Executive, Diabetes UK, and Dr Peter Aitken, Chair of the Faculty of Liaison Psychiatry, Royal College of Psychiatrists, gave evidence.
Q72 Chair: Can I begin by apologising on behalf of the Committee for keeping you waiting beyond the published start time? We had one or two internal issues to deal with. Apologies for that, and secondary apologies in that we believe there is going to be a vote on the Floor of the House in 10 minutes. We will be here for 10 minutes and then we will be away again, all of which, I am afraid, means that the time that we have is going to be quite constrained. Could I ask you to respect that as well and, therefore, briefly introduce yourselves to the Committee?
Professor Silman: I am Alan Silman, medical director of Arthritis Research UK, which is the largest research charity funding arthritis and musculoskeletal research in the country. It also has a portfolio of activities aiming to support patients and health care professionals and to advise on health care policy.
Baroness Young: I am Barbara Young, chief executive of Diabetes UK. We do the same for people with diabetes and people at risk of developing diabetes.
Dr Aitken: I am Peter Aitken, a doctor and psychiatrist, and chair of the faculty of liaison psychiatry at the Royal College of Psychiatrists. Our particular interest or specialty is the interface between medical and psychological symptoms.
Q73 Chair: Can I start the questioning? I want to jump into the middle of this, because the Committee has expressed the view many times-and we have heard evidence from many witnesses-on the importance of a greater community focus on services for people with longterm conditions, greater emphasis on early intervention and prevention. All those arguments will be very familiar. We have also heard it said many times that that delivers better services, but there is no evidence to support the proposition that it relieves pressure on acute services.
I would be interested to hear your answer to those who say, yes, this is a good idea, but, no, it does not deliver reduced demand on acute services. Who would like to start on that one?
Baroness Young: I will start because we have a report, which I shall leave with the Clerk, that looks at those evidencebased interventions along the care pathway that deliver quality and cost reduction-or at least quality at a cost-neutral level. I think there is some evidence, but I must admit that I had to be sedated when I was reading Alan Maynard’s evidence to the Committee, because what patients tell us about how they want to be looked after is as important as the evidence. They want to be looked after in an integrated way, with their needs in primary, community and secondary care joined up so that they get a seamless service. We could wait for ever for absolute evidence. Let us make a start now on some of the things that we know save money and that patients are anxious to see, which is this joining-up of services.
We would be very anxious if there was a wholesale rush to primary and community care, because certainly people with diabetes need access to specialist services when they require them as well as services in the community and in primary care. For people with type 1 diabetes the balance is more towards the specialists that need to lead their care, and for people with type 2 it may be more towards primary care being in the lead; but they certainly need that integration and the ability to access the range of services when they are required.
Professor Silman: Musculoskeletal diseases are chronic conditions. There is a patient journey as they go through these diseases, and the journey varies. Sometimes people have flares and sometimes they are relatively well, but they need care throughout that journey.
In answer to the specific question, there is some evidence, for example, that people who have had a fracture as a consequence of osteoporosis are at risk of having another fracture and a fall. Care given, which predominantly can be in the community in terms of falls prevention, for example, can prevent people from coming back into hospital. There are a large number of situations where people get admitted to acute care because of inappropriate medication or where things have gone wrong, where a more integrated approach is needed to the management of those patients. There may not be any global evidence about cost savings, but there are specific pockets that can help.
Dr Aitken: The mental health story is straightforward. Whether in a community or a hospital setting, we are not integrated with the provision of medical care for longterm conditions. If you take something like diabetes or arthritis, where perhaps 25% or 30% of people will have a depressive disorder as part of that mix, as soon as you are admitted to a general hospital there is almost no mental health provision for your care while you are in that setting. If you are discovered to have a depression and you come out into a community setting, mental health services are not set up to deal with that alongside your diabetes or arthritis care. So that is the gap, and where that gap is being filled by integrated liaison psychiatry services, we are beginning to see a difference.
The evidence base is at the level of qualitative evidence, where the stories about patient satisfaction, experience and outcome are there. The economic benefits will be more difficult to see because the infrastructure costs have not yet come out of the pilots running in Torbay and northwest London. However, with the eye of common sense one can see that in the time ahead those costs will come out through integrated reorganisation, and the benefit then will be there.
Baroness Young: Could I comment on what we also discovered in our study, which was that barriers to some of these more costeffective patterns of integrated care were happening? Quite often, the thing that had to happen in order to save the money had to happen in community or primary care, and the saving would realise itself elsewhere in the jungle, usually in secondary care. Likewise, there would be time differentials. Some of the mechanisms, like the introduction of multidisciplinary foot care teams, have a pretty immediate payoff in terms of cost reduction. Others, like patient education or introducing a Year of Care approach, have a much longer-term set of payoffs. The barriers of both when and where the payoffs come were to us quite substantial. There were very few that could be realised quite quickly in the same part of the system-that is investors getting the benefit out quickly in the same budget. That, for us, drives very clearly the need for a pooled budget of some sort in order to be able to realise those benefits.
Chair: It is a huge subject. Valerie wants to come in briefly, and then Grahame.
Q74 Valerie Vaz: Who is picking up those patients who need mental health care? Are they being picked up at all?
Dr Aitken: In the general hospital, it is extremely patchy. There have been a number of mapping exercises trying to identify what the provision of health psychology and liaison psychiatry might be nationally. That work will need to be done with rigour and with support from an institution like the London School of Economics. We would need to know the answer to that question because, where there is a service like the Rapid Assessment, Interface and Discharge service at Birmingham City hospital, the economics are clear: for every £1 put into a service like that, £4 comes back to the health economy.
Chair: We will come back in 10 minutes hopefully and Grahame will lead off. I apologise for the further disruption.
Sitting suspended for a Division in the House.
Q75 Grahame M. Morris: I am sorry for that interruption. I want you to elaborate on your replies to the first answer. I am very pleased that you heard the evidence from Professor Maynard. He was a bit disparaging, if that is the right word, about the lack of evidence that has been presented on which decisions are being based. What are the main costs in redesigning the services so that they are more integrated, so that they are community- based?
Professor Silman: First, it is important to say that if we need to understand costs we also need to understand benefits. One of the benefits is being able to show that there is an improvement in health and satisfaction. An improvement in health requires that we have the data to show that the change in service configuration has produced a benefit. One of the challenges for most longterm conditions-and particularly those that Arthritis Research UK are responsible for-is the lack of data to show benefit. Within the NHS we are very good on having data on acute hospital episodes, but we are very weak at having the data to show that there is a change in health status in longterm conditions.
One of the costs-and it is an important consideration-is that we need to invest in both developing and being prepared to collect data on both the process and the outcomes of care. These are aspects that Arthritis Research UK can provide more information on if you would like.
Q76 Grahame M. Morris: Okay. Baroness Young told us that there is demand from patients-if we are talking about whether this is evidence-based or anecdotal-to have diabetes services delivered in the community. I can understand that. What is your view of the effectiveness of the care of longterm conditions for both arthritis and diabetes in the community? Is it more effective, even though patients may desire it, than going to a major general hospital to have their monthly blood tests or whatever it is? I can understand that it is desirable to be treated locally, but is the localised service more effective?
Professor Silman: I can answer the question in relation to arthritis. The issue is less about where the care takes place. For example, in musculoskeletal diseases there is not the requirement for access to high tech, so the issue is access to expertise rather than the geographical location where the care takes place. For people who have a chronic condition, most of the time they do not require access to specialist expertise. They may require it at various stages, and that access can be delivered within primary care, in the community or at a local hospital. The important thing is that patients have the right access at the right time, and where it is and in what kind of building is less important. There is evidence to suggest that that is the case.
Baroness Young: Perhaps I should correct a misapprehension that I have given. What patients are telling us is that they want their care to be joined up and, as was said by Alan, they want to be able to access the right care at the right time. They do need specialist care when they have a complicated problem, and it can be delivered in the community by a specialist if their specialist is coming out of the hospital or it can be delivered in the hospital.
The important thing, first of all, is that general practitioners are skilled up in order to be able to play a full role in the care of people with diabetes, so there is an education issue. There is also a shared information issue. Diabetes is pretty well placed in terms of its being one of the best specialties for having a good dataset, but that needs to be shared between primary, community and secondary care-and with the patient, hopefully, so that they are also in possession of all the facts. There needs to be a joinedup process. The commissioners, the providers and the patients need to get together to plan and design that integrated care pathway, so that the joinup happens and that the individual parts of the pathway work with each other, share information and that people are properly skilled for the role that they are going to take in that pathway.
Q77 Grahame M. Morris: To sum up, you have told us that the NHS spends £10 billion on diabetes generally and about £5 billion on arthritis and musculoskeletal and related conditions. Is that money currently being well spent? In terms of the changes that you are proposing-the integrated care pathways-would they deliver improved efficiency and better reach as well?
Baroness Young: The current care pathway is hugely inefficient. If you look at one example, patients with diabetes-and one in five hospital patients has diabetes-stay in hospital on average for three days longer, irrespective of what they are in for. That is not necessary. If we had proper specialist diabetes care teams in hospitals that were providing the right sort of care from the day of admission, we could knock that excess length of stay down considerably, which would be a huge saving, and likewise if we improved the care in primary care and community care, because about 80% of the cost of diabetes is dealing with the complications rather than the primary condition.
We believe that there is sufficient evidence that if you enable patients to be diagnosed early and to be educated for selfmanagement so that they can properly look after themselves, and that they have the 15 essential annual checks that they need, you could reduce the complications by about 80%. There is plenty of money in diabetes, but it has been spent in the wrong places.
Q78 Chair: Is that broadly the same for mental health?
Dr Aitken: Yes, I think that is right. The point I was going to make on your question about cost is the importance of rigorous evaluation. Where we are seeing new transformative mental health services emerge, such as the RAID model, it is precisely because we have good data and robust evaluation that we are able to answer the question and say, "Put £1 into that kind of service, you will take £4 of cost out and you will get your quality benefit."
Q79 Grahame M. Morris: It is quite interesting that you should say that, in view of the fact that Norman Lamb was on the BBC today, there having been a huge issue about mental health services and whether there is adequate capacity and so on. Is there enough money in the system to enable us to engineer these changes, these multidisciplinary teams, in delivering an integrated service?
Dr Aitken: I would suggest not in mental health. I say that simply because this area of the relationship with medicine, the relationship with longterm medical conditions, has not been addressed in the period of time when the national service framework was focusing on the needs of people with more severe conditions like schizophrenia, bipolar disorder and so forth.
We are now in a position where we realise that this focus over a decade has meant that there has been very little around for people with anxiety and depression. It has been addressed in some way through the investment in Improving Access to Psychological Therapies, but those programmes specifically deal with people who present with anxiety or depression. They are not there to respond currently to people who are found to have anxiety or depression as part of a longterm condition. That, for me, is the gap.
We also have to be conscious of the wider debate, which recognises that there are gaps in how mental health services respond to the prehospital acute pathway, so the crisis and home treatment response that we might need to protect the use of A and E is probably inadequate. We definitely have some way to go before we will be in the position that diabetes might be in.
Professor Silman: I have a case study that you might find helpful. The commonest musculoskeletal problem, without any doubt, is chronic low back pain. Indeed, a World Bank report identified it as the greatest single contributor to years lived with disability. A lot of unnecessary treatment goes on in secondary care. A programme called STarT Back, initiated for appropriate primary care decision making in the pathway of care for patients with chronic low back pain, resulted in improved clinical outcomes, improved patient satisfaction and a saving of £35 per patient. When you think about the millions of people who have acute back pain every year, that is a substantial saving.
Q80 Dr Wollaston: Could I come back to a point that Baroness Young made on selfmanagement? Could you set out for us how you feel services should improve in selfmanagement, and how that will save money?
Baroness Young: At the moment it is difficult to tell how many people get education for selfmanagement in a structured way. In the data that we get from the National Diabetes Audit, it ranges from less than 0.5% to some figure that is about 20% or 30%. We are at a point where clearly many people are not getting any education at all that is structured to help them manage their diabetes.
The evidence shows that, for people with type 1 diabetes, the investment in education and selfmanagement would break even after four years and would then deliver cost savings. As to education for type 2 diabetes, we have not yet found a way of delivering it that produces savings, but it is regarded as being cost-effective in all the studies that have been done so far. However, there is a piece of work that needs to be done to see what is the most costeffective way of providing support for people with type 2 diabetes, because certainly not getting any education at all is a bit of a nobrainer; if you do not educate people, the likelihood of them being able to selfmanage is pretty low.
Q81 Dr Wollaston: Many of the patients I used to see really valued the specialist diabetes nurse they could phone up with their results and get specialist feedback. Do you feel there is a role for that across more longterm conditions, and whether there is any evidence base about how much that saves the system as well as adding to patient satisfaction?
Baroness Young: Certainly, in a number of the studies that we have in our report, the role of the diabetic specialist nurse was paramount in patient care. The diabetic inpatient nurse is really important in making sure that people get good care and can get discharged promptly.
In care in the community and in primary care, the diabetic specialist nurse is a resource for patients but also for health care professionals, in that much of the training of general practitioners and practice nurses, particularly in support for patients with diabetes, comes from the diabetic specialist nurse. Much of the education for patients comes from them and the daytoday being at the end of a phone. Being able to give support and advice that would prevent something from going seriously wrong and therefore resulting in the need for expensive intervention by a doctor, or even inpatient care, is where the diabetic specialist nurse is really valued by the patients. It is important to an integrated service.
Q82 Dr Wollaston: It is certainly valued, but is there any research that shows the cost saving as well?
Baroness Young: We have research, as part of a bigger study, showing where diabetic specialist nurses have played a role, but I would have to come back to the Committee to see whether we have any research that demonstrates the costeffectiveness of the diabetic specialist nurse standing alone.
Q83 Valerie Vaz: Can I follow up on that? Is it dwindling or going up?
Baroness Young: At the moment, we are really worried about diabetic specialist nurses-this is in common with many longterm conditions-because the current squeeze is having several effects. One is that quite a number of them have been downgraded-they are deskilling the role a bit-and there are places where we know that posts are being held vacant because of the financial squeeze. Those two factors would really concern us.
The thing that we would be looking to see, apart from protecting the level of these posts, is getting a standard agreed accreditation process for their training. At the moment, people coming in through a whole variety of routes call themselves diabetic specialist nurses, some of whom will be highly skilled and some of whom will be less so. It is important that there is a common agreed standard, and we have developed that with the diabetic specialist nurse community. We now need that to be recognised by the education and nursing authorities.
Q84 Valerie Vaz: Do they definitely help in not having hospital admissions?
Baroness Young: The combination of good general practice and practice nurses, help from specialist doctors and specialist nurses on the phone or in person from the primary care-in-the-community staff, and the availability of those skills to help with training patients so that they have some structured education, are the three things that really help reduce hospital admissions.
Q85 David Tredinnick: Do you think that the integration of services across health care and social care provides the best opportunity for maintaining and improving quality of care in these times of financial stringency?
Dr Aitken: If I may start, it is essential for mental health simply because when we are meeting people, we are looking at their biology, their mental life and their social anthropology, because people live in groups and families, have roles and jobs, and it is that interplay that allows somebody to experience quality of life. If, by division of our service models, we are required to look only at the neurobiology and cannot consider the psychology or have easy access to social remedy, we are constrained in our effectiveness.
I would suggest that colleagues in social care find the same trickiness: if they are trying to manage somebody and there is a medication need, and they have to make a referral and go through several processes to bring the right agency to bear, it has clearly got to be inefficient, and it is not good for the patient’s experience and not good for the delivery of biopsychosocial care.
For us it is the most natural thing in the world to create an integrated system. It requires mature commissioning and further work on currency, because the types of incentive we have in the current system do not lend themselves to promoting the right sort of behaviours by acute providers and mental health providers and so on and so forth, so there needs to be some revision. However, where you see mature commissioning working well-the Torbay system is a good example of that-you have staff that are colocated, the skills are in the same building and they can gather around the person in real time; seven steps of interagency referral can become perhaps two telephone calls and a conversation over coffee. It works.
Q86 David Tredinnick: For clarity, as far as longterm conditions are concerned, that very much applies-that integration is essential?
Dr Aitken: Yes.
Professor Silman: There are a couple of dimensions here worth considering. First, patients with chronic conditions, particularly those that lead to disability, rely very heavily on their carers, so there is a requirement to support both the patient and their carers, and this is where social care is so important.
Secondly, there is the issue in terms of things like prevention; people with chronic musculoskeletal decisions fall, and you can maybe do things about falling by providing aids, appliances, handrails and so on in the home. There is evidence to suggest that some fairly simple remedies can both reduce disability and prevent morbidity and serious episodes. The challenge is having the data systems that will allow the integration of those, so that you can fully assess their costeffectiveness and value.
Baroness Young: Could I put a slightly different slant on it for diabetes, because I think it is different?
Although, when they get older and have multiple morbidities, people will require social care as well as health care in the early stages of diabetes-many people live through it for many years before they ever have any symptoms-the important thing is that the health system is joined up rather than the health and social care systems being joined up. In the early stages of diabetes, many people live for 10 years with it before they have any symptoms at all. We need to get the health system joined up so that there is risk assessment and early diagnosis, with people getting the right sort of advice and education for selfmanagement, and the 15 essential checks every year to try to prevent them from getting to a point where they will need social care at all. That joiningup of the health care system is really important.
Q87 David Tredinnick: Professor Silman, you mentioned carers, and my colleague Dr Wollaston mentioned selfmanagement earlier. Wearing another hat as Chair of the Parliamentary Group for Integrated Healthcare, which is more to do with bringing complementary and alternative medicine into the health service, we had a meeting last year where Trudy Reynolds, the project manager of the personal health budgets pilot study at Oxford Health NHS Foundation Trust, gave a presentation in the House. She said that the pilots showed that personal budgets were working very well and that patients were getting greater satisfaction, and that they were getting greater choice and flexibility. She also said that not only are they getting better satisfaction from being able to choose therapies but it is freeing up carers, so freeing up valuable time. Is that a model that you support going forward?
Professor Silman: That is a really interesting topic because we know that approaching 50% of patients with arthritis seek complementary care and pay for it themselves. There is research to suggest that often the environment in which that care is given, and the fact that the patient has selfselected that care, is associated with a better outcome over and above the benefit that the complementary therapy can bring.
What is important is that patients get the right therapy at the right time. There is an evidence base around complementary therapies, both herbal treatments and complementary practitioners. We, as a charity, have commissioned two reports where we attempted to summarise that evidence base to provide information for patients and health care professionals, and we are happy to share that with the Committee. The important thing is that that evidence base has to be that the care is effective, is not associated with adverse events and, perhaps equally important, does not interfere, prevent or postpone the necessary care that might be needed for some patients in getting access to conventional therapy.
The brief answer is yes, there is a place. One can understand why it might work, both in terms of the context and how it is delivered and, for some complementary therapies, the particular care, but it is important to apply those three tests.
Q88 David Tredinnick: I was focusing on the personal budgets before going on to complementary medicine, because I am aware of the research that you have done, and I have your press releases and reports here. It was striking that you were using motion style acupuncture-that is, acupuncture when people are exercising-and found that effective. Also, I think that I am right in saying that you found that randomised clinical trials had adjudged acupuncture to be effective in osteoarthritis, rheumatoid arthritis and fibromyalgia. Is that right?
Professor Silman: Yes.
Q89 David Tredinnick: No doubt because of the interest among your patients you commissioned these two reports, one on the range of treatments from herbal medicine and homeopathy through to shiatsu and everything under the sun really-I think that 22 are listed here-and also a report on practitioners. What is striking-correct me if I am wrong-is that all the remedies listed here were I think given a green light in terms of safety except for a couple of manipulations that had an amber light.
Professor Silman: Yes.
Q90 David Tredinnick: Yet, as I say, they were not only safe, but very popular with patients. If we are going to achieve an integrated service and perhaps cost reductions, is this the way forward? Are we going to see a greater use of these therapies, do you think?
Professor Silman: Thank you for that. There are a number of points.
First, we reviewed the evidence base that existed and it is not as robust as we would like, but clearly you need to go on the evidence that exists. Secondly, what is interesting-and maybe the back-pain field is a good example-is that it does not seem to matter which complementary therapy or practitioner patients are exposed to; studies seem to suggest broadly the same level of benefit. Does that mean that they are all equal, or is it saying something about the context in which those therapies are delivered? Clearly-I guess that Arthritis Research UK would say this-there is a research agenda to try to understand whether it is the therapies or whether it is the context and the circumstances, the patient’s selfbelief and other aspects, that might impact on how care is given.
We are also concerned about chronic longterm conditions, as patients can end up spending quite a considerable amount of their own resources. If the evidence for real benefit is lacking, that is something we need to think about.
Q91 David Tredinnick: I am going to move on to ask another question, unless anybody wants to come in on that. What service integration do you think exists at present, and how soon could genuinely integrated services be put in place-in the context of the Health and Social Care Act, I suppose?
Dr Aitken: I touched on a number of pilot examples of where integrated care is helping, particularly with the over-75 population and the population with diabetes in northwest London, and so on and so forth. My instinct is that, as the commissioning environment matures, the pace for commissioning integrated services will increase. We are also looking forward to learning from the pioneer bids that are in the process of being announced, which I think will help further the evaluative evidence for their effectiveness. Certainly, from a mental health perspective, we welcome that.
Q92 Chair: Is there any evidence of the pace of change increasing?
Dr Aitken: I do not know the answer to that question.
Baroness Young: I certainly have a view about it.
Q93 Chair: The Committee is always interested in a view but even more interested in evidence.
Baroness Young: It seems to me that holding our breath waiting for commissioning to improve is quite a long shot, and we have waited for a very long time for commissioning to improve. Certainly, the model that we are promoting is twofold. One is that there needs to be an increased focus on care planning, with the patient involved and at the centre, so that the patient is the integrator, as it were, around their needs. Secondly, rather than simply relying on the commissioners suddenly getting a lightbulb moment, we ought to bring commissioners, providers and patients into the same planning, designing and delivery process.
Quite frankly, I would do away with the purchaserprovider split if I was king for a day, but certainly, while it is still here, we need to encourage that way of jointly planning and delivering services between commissioners, providers and patients, otherwise we will wait a very long time while commissioners find their feet under the new system only to be faced with yet another change to the system. That, basically, has been the story of commissioning for the last 20 years.
Professor Silman: An experiment is about to happen in Bedfordshire where they have decided to look for a totally integrated system of managing musculoskeletal care. They put out a tender to a combination including some patient charities and other providers who are going to provide integrated musculoskeletal care, from a person going to see their general practitioner for back pain to, as I understand it, the delivery of hip and knee joint replacements. As an entity, as a concept, it is one that we should support. We need to be aware of whether we can measure whether that leads to improvement in quality of care for patients.
That leads on to the fact that we have to accept that, whereas, for example, in diabetes there are some really strong biomedical markers of improvement in quality of care, for many longterm chronic conditions we do not have those. For example, Arthritis Research UK has commissioned some work developing a musculoskeletal patientreported outcome measure across different levels of care-primary care and secondary care-with the agreement of the different specialist groups, because we need such data to be able to show whether these experiments, which are conceptually attractive but expensive, actually deliver health care benefits.
Baroness Young: Could I offer the Committee a paper we have done that pulls together the models of integrated care that already operate in diabetes? It is too early to be able to tell whether they have done the job yet of producing improved quality and reduced cost.
Q94 Chair: We have asked from several points of view for opinions about the state of the evidence base, and I think I am right in saying that every answer has assumed we have been interested only in evidence from within the UK. There was an implied question of whether anyone is looking for evidence outside the UK, because other people face exactly the same problem.
Baroness Young: Our paper on costs and quality improvement draws from elsewhere in the world.
Dr Aitken: We have mentioned the Kaiser Permanente system, which is a useful place to look to see some evidence. The benefit of integration, certainly with mental health, is delivering a dividend.
Professor Silman: There are some data from Holland in relation to integrated care.
Q95 Chair: It would be interesting to have the references for that, because we are told repeatedly that the evidence base is thin. If that is the case, we should look more broadly.
Dr Aitken: It is Kaiser and veterans. They also share-
Q96 Chair: Indeed-the usual band of suspects.
Dr Aitken: It is good data properly evaluated. Mental health in this country needs the same level of rigour applied to our outcomes and processes as those systems internationally do. If we had that, we would very quickly move to a place where we knew exactly what to do.
Chair: Thank you.
Q97 Valerie Vaz: Can we move on to the Year of Care and "house of care", Baroness, that you mentioned earlier? I am not sure whether it is something that crosses all the disciplines, but could you tell us what it is and whether it would apply to the other longterm conditions, and then the other two could come in?
Baroness Young: We, with others, instituted a series of pilots looking at how you could improve care planning for patients with diabetes, primarily based in primary care. That was successful in terms of patient appreciation for being involved in care planning. It was successful in demonstrating what needed to change in primary care in order to be able to do successful care planning, and it was deemed to be cost-neutral in terms of ability to deliver it. That has now been taken and widened to look at its applicability to other conditions like stroke, heart disease and others. Our slight anxiety is that it is now being called the "house of care", which is a set of principles that need to be in place to allow that sort of effective care planning to happen, but it was very much a set of pilots that looked at how primary care should operate rather than how this integrated pathway across primary, community and secondary care should work.
Although we are very supportive of the Year of Care-we are delighted that that model is being adopted as showing potential for other conditions, particularly because it does bring the patient right to the centre of planning for their care, and that is where true integration happens-if a patient has multiple morbidities, planning for their particular care means that account has to be taken of their multiple morbidities.
The one anxiety we have about the whole co-morbidities debate at the moment is what I call grey goo. If you are not careful, you work at such a level of abstraction of principles, because that is the only thing that is in common between different conditions, that you end up losing the very specific focus on the distinct things that individual conditions need. In the case of people with diabetes, it is very much education for selfmanagement, the 15 essential care measures that they need to have delivered every year and access to specialist care at the point that it is required. We would be anxious if there was a sort of general care planning process that delivered a load of general interventions and lost sight of those specifics.
Q98 Valerie Vaz: Can you describe what exactly it is when you say that patients are at the centre of care?
Baroness Young: It is very much about changing the way in which GPs and patients interact as part of their annual processes.
Two very key things are that the patient is provided with information in advance about blood sugars, cholesterol, blood pressure and various other tests that they have had, so that they can have a think about those before they come to their care planning meeting; then there is at least an annual care planning meeting with the general practitioner, which is a longer consultation than the eight minutes. That allows there to be a discussion between the patient and the doctor about what issues are coming out of the information base, the issues that the patient is anxious about and the things that the GP thinks need to be considered, and they can jointly make a plan that will take them through the next year of what needs to happen.
The pilots demonstrated that by doing that, at the same cost, even though the up-front process was more expensive because it took longer, you could reduce the number of visits to the GP that the patient had as they felt more confident about their care because there was a care plan in place and the practice nurse was able to take that forward, and also hopefully-though I do not think we have yet demonstrated that it would-it could reduce the number of patients being propelled into crisis where they then have to go for secondary care.
Q99 Valerie Vaz: So there is a care plan for, say, someone with diabetes, but what about other longterm conditions that may or may not go together with that? How is that intertwined?
Baroness Young: That is where the grey goo needs to be plumbed. We need to be very clear about what are the things that are generic and span all the conditions and the particular things that individual conditions require. That makes it quite difficult in terms of the leadership of the whole process. The general practitioner and the practice nurse are going to be very important, but where does specialist input come from? How do we make sure in that process that there is enough specialist input, and also that the individual GP and practice nurse are well enough trained in a range of conditions to be able to do that planning exercise effectively, and then the subsequent implementation in support of it? I do not think we are yet at the bottom of that, of being able to understand what the art of the possible is in terms of the balance between generic skills and specialist skills. That, in my view, is what needs to be sorted.
Dr Aitken: If I may echo that, it is always worth while in psychiatry and mental health to reflect on the fact that we have an international reputation for being good at this sort of thing, and that care planning has been part of community mental health practice for the 20 years that I have been in the specialism.
Care planning done well is a wonderful thing. I have gone through the era of care planning done for you, to care planning done with you and care planning being led by you and we respond. The most elegant model, as well, is recovery action planning, which is part of the recovery philosophy that underplays chronic conditions in mental health. It works brilliantly, with the care coordinator walking alongside the person, their outcomes very much in mind- "What is it that you want to achieve in your life, your whole life?"-and if we look at it through the lens of sociology, psychology or medical medicine, what would have to change in order to get you where you want to go. Let us work from that principle. There are two critical ingredients to it. One is having the specialist resource available to input in a genuine multiprofessional way. The multidisciplinary team has to be real; it cannot be all the same kind of practitioner at the same sort of level, which is often part of the constraint of budget. It has to be people with expertise genuinely working together to help the person make sense of what they are trying to do.
The second key ingredient is time. Effective care planning takes an hour plus. It is not something that a GP can achieve in an eight-minute consultation in a surgery. When we are resourcing for mental health and for care planning around longterm conditions, my plea would be, "We need a currency that values time." That time needs to be costed, to be understood-and it may need to be protected, because what happens under the pressure of constrained resource is that you get skill diminishing, grade deflation and a reduction in time. People will say, "We think that you can do this with lowergrade staff, and we think that you can do it in 20 minutes." Without a robust dataset to say, "No, it needs to be 89 minutes, because that is the level of conversation that delivers the outcome benefit that we seek"-until we have data that can defend time-we are all going to find it rather difficult to defend the multidisciplinary environment and the skill mix required to do it properly.
Q100 Valerie Vaz: It is a data problem?
Dr Aitken: The datasets are beginning to emerge. For example, if one looks at the minimum dataset now for mental health and at some of the cost cutting with hospital episode statistics, for example, we are beginning to get some really interesting data pictures about use of accident and emergency by people who are known to have schizophrenia or bipolar disorder, for example. So we have some very large datasets out there. They also need to be mined in a multidisciplinary way. We need groups of experts having a look at those datasets and being helped to see the pictures that they can reveal to us.
Rigour and evaluation is going to be the key that unlocks what we do next, so I would go back to my plea that, when we set up these models, these social experiments, we make sure that we put in the evaluative research programmes around them that deliver quick learning. We are not looking for three years from now. We want to learn as we go, but we want the journey measured, please, so that we can decide after six months, "That is not the way to go. We need to turn that way," or, "This looks like a purposeful line of inquiry. Let us have some more of that, please."
Professor Silman: Can I address the issue that Baroness Young was talking about in relation to the multimorbid environment? We know that 80% of patients with a chronic musculoskeletal problem have another comorbidity. As the population of people with chronic conditions ages, we are going to see increasingly large numbers of people with multimorbid conditions. There is a challenge here.
Baroness Young talks about the grey goo. What is going to be very difficult if we are to have integrated care is having a care plan about your arthritis, a care plan about your diabetes, a care plan about your hypertension and a care plan about your depression and so on. We need to be very clear what care planning can and cannot deliver. Care planning can deliver an informed patient and it can enhance the patient experience, but it is only one lever to enhance the quality of care. It would be wrong to encourage the idea that somehow patients should have six, seven or eight different care planning appointments each year, because that would go against integration.
Q101 Chair: Surely that is the whole point, is it not, that a care plan is supposed to be built around a patient, not a condition?
Professor Silman: Absolutely, yes.
Q102 Chair: That is the reason for having a generalist GP, or whatever other professional is the right professional, to coordinate all the necessary care.
Professor Silman: Yes. I think we are probably singing from the same song-sheet. What we are saying-certainly what the arthritis community is saying-is that there are considerable advantages in having, if you like, a care plan for the patient in the multimorbid environment that takes account of all their different conditions, plus the psychological and psychiatric overlay on top, but accepting, in addition, that there will be things that are specific for each condition for which care planning is not the answer.
Baroness Young: That is where I part company with how it has been described so far. It seems to me that, for most patients, there will be some conditions that are their primary anxiety and then there will be other things that go alongside that. What remains to be seen is how effectively we can skill up primary care to be able to deal with the comparatively fine grain of several primary conditions, because care planning will be no good to man or beast if it does not deal with the specifics of your diabetes, if you have diabetes, no matter how well or poorly looked after it is.
Q103 Chair: I would like to hear Dr Aitken’s colour on this.
Dr Aitken: I will give you an example of a multidisciplinary meeting happening in a general hospital setting, which is what I do day in, day out. Our patient will have multiple things wrong with them and we will be having a discussion: "What is it you want to be able to do? Let us bring in our experts from cancer care, diabetes or from heart disease, and let us have a conversation, because this is pretty tricky."
We have an evidence base for these disease states but we do not have a particularly secure evidence base for what happens when these things occur together. Each of these disease states might be treated with medicine according to NICE guidance, and there might be particular therapeutic approaches that each would choose to take, but when they all occur together in the one individual there will be some trades. The care planning meeting is the trading discussion where the risks of one course of action versus another are traded out. That is why the expertise is essential. This is not protocolised care. This is the grey area with protocolised care, where you have to make a judgment. If I give you this medication, it is going to prolong the heart rhythm in a way that puts you at risk of a heart attack or dropping dead; or, if I do this, it is more likely to increase your risk of stroke.
It is finding that balance and then agreeing that this is the way forward to help you get to where you need to be. The communication with the general practitioner then becomes absolutely pivotal. We have done that piece of work and used up that time. How do you then communicate the essence of that to the absolutely busy primary care physician and their team, so that they can support that work going forward?
Q104 Chair: It is more fundamental than that, is it not? It is also about what their role is. You have effectively done the job of the general practitioner at that point, because that is what the care plan is: it is the generalist diagnosis, is it not?
Baroness Young: That is where the difference is between the description that you are going through, which is primarily a care planning process around people who are in secondary care, whereas care planning for the vast majority of people with type 2 diabetes will take place in primary care with the GP.
Q105 Valerie Vaz: Can I follow on? How difficult do you see this when it is being rolled out throughout the country? Are there barriers to this implementation? Do you have any positive examples from, say, Scotland or Wales? I do not know what they do there.
Professor Silman: It is interesting. On the back of what Diabetes UK has developed, including getting people from the diabetes community, we thought about the opportunities for care planning in relation to chronic musculoskeletal conditions, and there are some difficulties.
There is an advantage in conditions like diabetes or high blood pressure, where you have some very strong biomedical markers. The problem in implementing care planning for many other longterm conditions is actually understanding what it is that we want to change, what it is that constitutes quality of care for patients. Then you throw into the mix, for example, the complexity that with many of these conditions people have chronic pain, fatigue and depression. What is it that we want to achieve? What are the goals that we are working towards with patients, so that they understand the aim of their care plan? These discussions are happening. It is starting, and there are no easy answers to that, but I think they are fundamentally important for patients.
Baroness Young: There is evidence of the care planning process being effective in a single condition. For example, Tower Hamlets, which used to have incredibly bad indicators-it was one of the worst 10% of PCTs-for diabetes care, introduced a care planning process and has gone on to become one of the best performing areas.
My concern at the moment is that, in an effort to get something that is genuinely integrated across a whole range of conditions, any movement in implementing an effective care planning process for something like diabetes, which is a very medicalised condition, and quite rightly so, will come to a halt while everybody struggles with this much bigger integrated process, and that we will not get the gains that we get now from integrating around the diabetes care pathway but that they will be submerged.
Chair: We appealed for brevity at the beginning.
Q106 David Tredinnick: I am curious about the problem of different treatments for different conditions-the multimorbidity problem. As someone who has used traditional Chinese herbal medicine for many years for general well-being, I am struck that perhaps we have something to learn from people who, over 2,000 years have found how different herbs interact with each other, and perhaps come up with the sort of combination that they call the chief, the deputy and the messenger-an old joke here, as it mirrors the Whip’s Office. They have at least two or three herbs that all interact together to deal with a number of issues in the body, and they may use up to 20 herbs mixed together. It seems to me that we may have something to learn from Chinese medicine at a time when we are facing the problem of combinations of medicines but really do not know what they do when they are all put together.
Chair: We will have one response to that.
Dr Aitken: I am very grateful to have a chief pharmacist who does her best to help when there are more than two medicines in the system, but it is complex. It is an area that is difficult.
Q107 Dr Wollaston: I briefly want to come back to the point about when you have a multidisciplinary meeting but there is the challenge of communicating that back to the GP. There is much interest at the moment in patients holding their own records. What progress do you feel is being made on that issue, and is that the way forward, not only in encouraging selfmanagement and understanding but in actually making sure that everybody knows what the results of that multidisciplinary meeting were? Very often the patient does not understand it, and the decision does not get communicated to the GP, sometimes for weeks.
Baroness Young: I could outline what is happening in Scotland. They have an integrated diabetes information service that is accessible by patients, general practitioners and practitioners in secondary care, but it is very much about diabetes rather than trying to design a fullyintegrated patientaccessible record.
Q108 Dr Wollaston: Is that about the patient holding their own notes?
Baroness Young: It is not about the patient holding their own notes.
Q109 Dr Wollaston: Do you feel it would be better if we went down that route?
Baroness Young: It is an online access system to the front end of their medical record, as it were, for their diabetes. The Scots decided that, if they were going to wait for a fullyintegrated information system covering a whole range of conditions, they would have to wait for ever, and that they should go and make progress now on diabetes.
Q110 Dr Wollaston: Is the problem with that, though, if you have several longterm conditions, that the patient might be able to access the diabetes part of their record but would not then be linking in if they had multiple conditions? Do you therefore think we need to move to the principle that patients are able to access their entire online record, and give permission to who else can access it?
Baroness Young: The other thing that we need to be conscious of-particularly in diabetes, where there is strong correlation between type 2 diabetes and social deprivation and ethnicity-is that part of the problem is how you get patients to engage with their condition at all. The idea that somehow they are going to fall over themselves to access their records or to be the main repository of their records is quite a challenge in that environment.
Q111 Dr Wollaston: Before I move on to the next part of my question, because it is to Dr Aitken, can I state for the record that I am married to a fulltime consultant NHS psychiatrist who is also chair of the parliamentary liaison committee for the Royal College of Psychiatrists?
Having got that one out of the way, can I go on to the point that you have already made, Dr Aitken, about the benefits of liaison psychiatry for those with longterm conditions? I presume that the £1 invested for £4 saved comes from the RAID study in Birmingham. Today Norman Lamb made the comment-I refer to his remarks-that there is an "institutional bias" in the NHS against mental health. I am interested to know whether you agree with that comment, because that has importance if we are going to shift funding within the NHS to longterm conditions, including psychiatry. How much of a challenge do you see that as being?
Dr Aitken: The college position was that it recognised the institutional historic bias. Parity of esteem has been accepted. NHS England has accepted that all its work streams will tackle the parity of esteem issue.
What that means is that, when services are being planned, the same attention to a mental health service would be afforded as might be given for a cardiology service or a cardiac surgical service. The notion is that mental health would be planned and resourced on a level with other areas of medicine. Psychiatry and the Royal College of Psychiatrists have gone a long way to helping the world see psychiatry as a piece of medicine. Perhaps for a decade it looked as if psychiatry was not part of the medical family in quite the way that radiology, pathology or other medical disciplines might be. The general feeling is that that has been to the detriment of making the case that psychiatry in medicine should be invested in and that it should support the leadership in transforming mental health services. That is the college position.
In terms of "progress towards," we see an intellectual acceptance of the argument. It is now about the practicalities of how you put that right at a time when everybody’s budgets are under pressure. The proof of the pudding will be in the eating-to see whether, after subsequent rounds of commissioning, it looks as if the balance of investment that would be needed, particularly to help the depression burden, will be of a level commensurate with the investments made in cancer services or other parts of the NHS. Again, we are going to require tight economic evaluation of exactly what the case needs to be, and how that ought to be met.
Q112 Chair: Can I interrupt rudely? Having disrupted the Committee because we had a Division in the Commons, there is a Division in the Lords if you need to vote on it.
Baroness Young: I think I shall ignore that one.
Chair: I am sorry, Sarah.
Q113 Dr Wollaston: Thank you. At the moment, we are not there yet. Are you hopeful that the environment is changing and that the commissioners are changing the way they are behaving towards psychiatry?
Dr Aitken: Yes, I am very optimistic that parity of esteem is part of the mandate, and that it is also reflected in NHS England work streams. There was some commentary last week on World Mental Health Day from various commentators that perhaps the commitment could be strengthened by tighter objectives, and that we might all be held to achieve that. At the moment the spirit is very much that we will move in that direction together, but it is not clear what success might look like, and I think that policy has been carefully worded to give some room for flexibility around that.
Dr Wollaston: Thank you.
Chair: At that point, and after a very disrupted session-apologies again for that-we say thank you very much for your evidence. It has been helpful, and we shall reflect on it in preparation of our report. Thank you.
Examination of Witnesses
Witnesses: Don Redding, Director of Policy, National Voices, and Liz McAnulty, Trustee, The Patients Association, gave evidence.
Q114 Chair: Thank you for being so patient with us, and apologies for delaying the evidence session. Could I ask you briefly to introduce yourselves?
Liz McAnulty: Good afternoon. I am Liz McAnulty, from the Patients Association. I am standing in for Katherine Murphy, who was due to be here.
Can I just say a little bit about the Patients Association? It is unique, I believe, in that it is the only patientcentred charity that is nondisease specific but covers all health and social care. It is very much a generalist organisation. This is the 50th anniversary of the establishment of the Patients Association and it has spent all that time-increasingly in recent years-listening to the concerns of patients, but also listening to examples of good practice and working on behalf of patients in as constructive a way as possible to bring about improvements in health and now also social care. I will stop there.
Don Redding: I am Don Redding. I am the director of policy for National Voices, which is a coalition of health and social care charities-around 130, including those who were here previously-and a better quality of care and support for people with longterm conditions is one of our current priorities. Part of our work is a strategic partnership with NHS England.
Q115 Chair: It is hardly the most important question, but I would like to ask a question of semantics first. You both report that you represent users of health and social care services, and there is a piece of semantics-a phrase that volunteers itself-about whether the people that you represent are patients or service users. How do you refer to them when talking about an integrated service?
Don Redding: First, we carefully do not say that we represent patients or service users, because we represent the 130odd charities who are our members, which is not quite the same thing. We switch between "patient service users, their carers and families," which I think has been in use since the CQC was set up, and "service users," which I increasingly prefer as a shorthand, but after a lot of chiding as well from people who use these services, "people," "people with needs," or "people who need co-ordinated care."
Liz McAnulty: There is a lot in the name, and the word "patient" is not in keeping with the new trend towards selfmanagement. It implies passiveness, patience and so on. From another world-I used to work as a midwife many years ago-the notion of "a patient" for a pregnant woman was seen as highly offensive. Those women were very active in managing their care, so woe betide any midwife or doctor who referred to a pregnant woman as a patient. I think we may move a little bit. It may well be semantics, but if we are truly to respect patient autonomy-people autonomy-in the management of their conditions, and if the notion of partnership actually means anything, whatever word we use, we need to ensure that the person really does have an equal say-indeed a greater than equal say-in the management of their conditions.
Q116 Valerie Vaz: I think they call us "one", don’t they?
Liz McAnulty: Yes, or "poppet".
Valerie Vaz: We don’t have names.
Q117 Chair: In other words, there is no easy solution to this conundrum. However, we are all familiar with the philosophy and the objective that I think is broadly shared, which is that there is a dilemma around the language. There is a lot of talk about building services around people and treating people, not conditions, and engaging people. Dr Aitken referred earlier to walking with the person through the system. How far are we converting that rhetoric into reality, and what more do we need to do?
Don Redding: I will speak first from the point of view of somebody who is very involved with the drive for more integrated care. National Voices helped to produce a narrative, which has been adopted by all the national system-leading organisations and by all the pioneer applicants, that redefines integration as being about personcentred, coordinated care. It is made up of a whole set of statements about what somebody would be able to say if they were getting care of that type, such as, "I can plan my care with people who understand me and my carers, and who allow me control and who bring services together to deliver the outcomes that are important to me." There is quite a lot in that about goals and where the goals come from, which we may return to.
I have just returned from speaking to the National Children and Adults Services Conference for the social services directors and local government and so on, and I have been doing the rounds of other such conferences. The realisation and understanding that coordination must be built around the person and is not a matter of structural change, merger of organisations or building of budgets-although any or all of those things may be required to support the person-is penetrating quite rapidly around the system. What I fear is getting half way with it, getting to a point where people are clear about the need to coordinate services around the person but are mainly coordinating the services, if you understand what I mean. They own the pieces on the board-the services, the professionals, the budgets and so on-and they feel that, if they can configure them a different way around the person, it will be better. From the point of view of service users, people who are trying to selfmanage or trying to live with disabilities or chronic conditions, they are saying that it falls short because it does not understand that this is about "me being able to take some control, set the goals and determine the direction of the care and support that I receive."
We are keen to ensure that we get the personcentred bit, not just the co-ordinated bit. There are signs of progress, signs of momentum picking up and we can, I am sure, talk further about that.
Liz McAnulty: Yes. From the database of the Patients Association, on the helpline, which runs from 9 to 5, Monday to Friday, we get thousands of contacts each year, and it is very clear-the evidence is there-that there is a lack of integration of services, and that is what patients need. Through our other work at the Patients Association, where we link with and assist trusts to implement a good complaints system, and we provide project work for them, integration is happening in pockets. I can give you more detail, but I can say that we understand that there are good examples in Calderdale, Bradford and in east Lancashire, where there is evidence of greater integration.
Q118 Chair: Taking Mr Redding’s point, is that integration or personalisation?
Liz McAnulty: I would not be able to speak to that just at the moment.
Q119 Chair: That is the real challenge, is it not, of building a personalised service-as Mr Redding quite rightly said, going beyond taking the existing organisations and making them work better together, and actually building the service round the needs of the patient rather than coordinating the existing structures?
Liz McAnulty: Yes.
Q120 Chair: Mr Redding, do you have somewhere you would suggest we go to look where it is actually working well?
Don Redding: The Minister will be announcing, I think next week, that the pioneers that have been chosen are to move at greater pace and to provide learning for others. Those, I suggest, are places where you could look, and they have had to put together applications that say what it is they are going to do, and why and how. I hope that, as those surface and become public, everybody will get a better look at what is going on around the place.
Some of these areas that are being talked about have a population of up to 2 million, with multiple numbers of CCGs, local authorities and provider trusts working together. Others are less sizeable than that, but perhaps have a little more local coherence and clarity as to where they are going, and they will provide other valuable sources of learning. Some have the voluntary and community sector in formal partnership with them to pursue this, and are consciously going to make use of that sector to extend their reach and to build community support for people to live more successfully with their conditions. There will be a lot of rich things to look at there in due course.
Chair: Thank you.
Q121 Valerie Vaz: I do not know if you were sitting in the audience when the previous panel was here, but you will know we touched on this Year of Care, or "house of care". Could you let us know what your understanding of it is?
Liz McAnulty: From the work of the King’s Fund and other organisations, it is a very useful conceptual framework to have a "house of care", but those of us who have been around health and social services for many years have seen models before, and we now need to see these producing some goods from the patient perspective. In many cases where we see moves towards integration, we are hearing from some patients that care feels more joined up, with positive responses from patients about improvements in care, but it is piecemeal at the moment and I think the "house of care" idea is a very good one. The challenge is going to be finding the leaders who pull it all together.
Q122 Valerie Vaz: What is meant by a "house"?
Liz McAnulty: I think the idea is that we can all relate to a house. The patient or the person-the human being who needs the services-is at the centre. The base of the house is the commissioning of services; the roof represents the organisational infrastructure to support the patient; the left wall of the house is informed patients and service users who are participating in their care and are keen to learn more about their care; and the right wall refers to health professionals being engaged and actively enthusiastic about delivering that care. The whole thing is supposed to fit together to deliver unified integrated care for patients and service users.
Q123 Valerie Vaz: Do patients understand that as being what is meant by "house of care"?
Liz McAnulty: I think the analogy is quite useful in some respects because, in parts of the country, rather than a house it feels like two rather dilapidated tower blocks with no links between them, and it is impossible for patients to navigate their way through. It clearly is helpful to policy makers, because the idea seems to have caught on very widely across the country.
If it works, that is good, but underpinning it must be the notion that the patient or the service user must be at the centre of health care. Evidence of that will be, for example, that at the moment GP services are not patient-centred: they are doctor-centred. A lot of outpatients departments-9 to 5, Monday to Friday-are certainly not patient-centred. When we see services opening up until 8 o’clock at night or at weekends when patients are able to use them, that will be helpful. That will be evidence that it is patient-centred. When patients do not have to queue on the phone for half an hour every morning to try to get a 10-minute appointment with their GP, and if they have multiple conditions they are only allowed to discuss one, then we will be moving on to something that is more patient-centred. However, at the moment we have a long way to go in achieving that. Those things-making it more patient-centred-do not cost a lot of money.
Q124 Valerie Vaz: This is happening in the community. It is much easier in a hospital, is it not? It is multidisciplinary.
Liz McAnulty: In the hospital, the patient as an entity just gets lost-and yes, it is multidisciplinary; but we are hearing from patients, whether they are in hospital or in the community, about getting services to link up with each other.
Don Redding: I will try to add a couple of pages to the DIY manual for building the house. It has been adopted some while back by the Royal College of General Practitioners as the model for generic longterm conditions, so that relates to the discussion that you were having with Baroness Young that the primary care practitioners see it not just as being for diabetes but for other conditions. It has been taken up and is being actively promoted by the Domain 2 team at NHS England, who held a twoday conference in London recently, which was basically taking its lead from the "house of care" model.
The initial reason for displaying it as a house was to build from the understanding that, to initiate good care planning, which I think was well described previously, there are different dimensions that you need to tackle. It is not just about having a longer consultation, for instance. It is about developing people so that they are able to participate as more engaged individuals, more able to use health information and to think about setting some goals that come from them, which is very difficult for a lot of people, particularly those with multiple conditions. That is the left wall, the informed engaged patient. It is about the fact that you need to develop your work force so that they can work in that way because they have not necessarily been used to doing so. That is the right wall-the health care professional who is ready to work in partnership with people in that way.
As you accurately described it, the roof is organisational processes. If you cannot then change the way that a clinic is set up so that you can ensure you are giving people at least a longer annual consultation to cover all that ground, which involves your administration systems, how you set the practice up and how you train receptionists-that is an example of the organisational process, and communicating from the hospital to the GP might be another part of that.
The realisation was that you must have commissioning as the foundation-as long as we have this system of commissioning-because people are going to need to put in place, as a result of that care planning conversation, a menu of things that range from the specialists, who know their specialist bits of care that the previous witnesses were talking about, through to what happens with their home care, for instance, and what happens with the allied professionals who are working with them, and moving into what is called the "more than medicine" part of the offer.
It was an important realisation from the Year of Care pilots that if, for instance, somebody’s own goal is to do with, "I want to be more active and I want to be out in the community more, because I have lost that," then you need places to offer them, to refer them to, which are nothing to do with medical knowledge necessarily but which are community support. One example in Year of Care is men’s cookery classes in the Bengali community centre, which would help the Bengali guy in Tower Hamlets who is struggling with his diabetes and who is going to get both community interaction, which helps mental health, and dietary advice, which is going to get him exercising by going to and from it. The commissioners-and this is very dear to our hearts, coming from the voluntary and community sector-need to be able to commission not just the integrated diabetes pathway but a menu of support that enables people to achieve the goals that they would set for themselves which are around not just health but well-being.
Q125 Valerie Vaz: You are saying that this model could pick up multiple conditions?
Don Redding: You asked whether patients could understand that model. Certainly, the experience has been that, when you use this model, a pictorial model, with professionals and people who work in services, they get it quite quickly, so that helps. We support it because we feel that it is one of the few places where, as Liz was saying, we have gone beyond a model and have done some demonstration. We think it is flexible enough that it could be moved to different communities of practice; the house you build in Somerset might be different from the house you build in Wakefield according to local circumstances, who is involved and how you want to change the organisational processes, but it still needs to be a house because it still has to change those four dimensions. I hope that helps conceptually.
Q126 Grahame M. Morris: I have some quick questions about carers and so on, but one just on this particular issue about the "house of care" model, which is quite intriguing. Is there a wall or window for carers? Are they part of the design brief?
Liz McAnulty: My understanding of it is that the patient who is at the centre could be linked up with the carer, because the carers very often are the advocates for the patients. They would act as the advocate in that, so it is a very important part of the "house of care".
Don Redding: For us it would need to be. If you go back to the earlier statement that was drawn from the narrative for person-centred coordinated care about working with one’s professionals and others, and that they "understand my needs and the needs of my carers," that is very definitely in there. Key to any resulting support offer should be that it supports the carer who is probably providing the bulk of the care. That certainly will come through the Care Bill and its provisions around assessment of the needs of both individuals and their carers.
Q127 David Tredinnick: I want to ask you about the integration of services across health care, social care and housing, suggest to you that it is the best opportunity for maintaining and improving the quality and extent of care and see whether you agree with that.
Liz McAnulty: I am sorry, would you just repeat that please?
Q128 David Tredinnick: I am really asking a question that I asked the previous group. Do you agree that there is a consensus that integration of services across health care, social care and housing provides the best opportunity for maintaining and improving the quality and extent of care? Is integration the key, boiling it down to a phrase?
Liz McAnulty: Again, thinking back to the request for evidence on this, there is not a great deal around in terms of evidence. However, from a commonsense perspective, when you look at the career of a patient or you hear stories from patients about how they have had to navigate health and social care, it can be an extremely painful process for people.
When you look at the establishment of new Health and Wellbeing Boards, in theory, anyway, you have all those organisations around one table. That has to be a good, positive step forward, rather than negotiating with one organisation and then having to go back. If care is to be patient-centred, that is one person who has all those separate needs. Services should not be geared towards totally different tracts for that one person to have to navigate if it is person-centred. The integrational provision of housing, advice and so on has to be a onestop shop for patients who are becoming increasingly elderly.
Q129 David Tredinnick: So it is a house with many rooms?
Liz McAnulty: Yes.
Q130 David Tredinnick: Were you sitting in earlier on in the previous session?
Don Redding: The latter part, yes.
Q131 David Tredinnick: I raised the personal health budget pilot that the Department of Health has been running in Oxford, the Oxford Health NHS Foundation Trust, where they were finding that patients who had control over their budget and their treatments were getting greater satisfaction. They liked the flexibility. I remember one particular example where a patient had chosen piano therapy, which may not be prescribed on the NHS, but under this regime they could choose what they liked and they were getting a lot of satisfaction from it. It was improving their quality of life. Secondly-and I mentioned this before-carers were getting flexibility; they could do parttime work that they had not been able to do. Do you think that personal budgets, where the direction of the funding that an individual receives is under their control, is the way forward? Do you see that as a future paradigm?
Don Redding: There is no doubt that there is an appetite for the rollout of personal health budgets and for that to keep pace and momentum. Again, if you look at the pioneer application bids, most are setting ambitions around that because they understand it to be part of the personalisation that needs to be supported. I know of people who were very sceptical of personal health budgets who finished up being very impressed by the pilots and their evaluation, and by examples of the kind that you have talked about. At the sort of leading edge of some of that practice locally, there will also be some push for people to be able to join their budgets up, and to be able to act together as commissioners of their care where they think they may want similar things. I definitely think it is going to be a fastincreasing part of the landscape.
I get a little wary sometimes when I hear people say quite baldly that they feel that that in itself solves the integration question, because then the person will be able to integrate their care. They will not. The care and support that they need will extend far beyond what the personal health budget will cover. However, it can make a crucial difference, I think, to people’s sense of selfefficacy-a slightly ugly phrase-the sense that you can take some control of your circumstances. Just getting that, even in baby steps, is very important for people with multiple longterm conditions. It is a key moment.
Q132 David Tredinnick: That is very helpful. Going back to what Liz McAnulty said earlier about the time that doctors see patients-for 10 minutes, and maybe that is limited to talking about one condition-according to research, one of the reasons that people turn to complementary and alternative medicine is that they can get longer consultations, perhaps an hour for a first consultation. Would you agree that that might be one of the reasons why patients look in that direction? Have you any experience of that?
Liz McAnulty: Do you mean in order to have longer?
Q133 David Tredinnick: I mean to feel that they have longer to discuss their issues-the time issue which you have alighted on.
Liz McAnulty: Yes. From the Patients Association’s database we know patients will use alternative therapies, and we will encourage them towards this, but to have longer care is not usually the reason they would do it. What they need is longer care time from the GP, practice nurse or consultant. Very often it is not that they need a longer time per se but that, because of change of personnel, they are having to repeat themselves, going back to stage 1 of their health condition, and maybe of four or five conditions. If it is a locum doctor or another person at the hospital, one of the complaints patients make to us is that it is obvious sometimes that the doctor or nurse to whom they have been referred has not even read their notes. So the issue is actually not so much more time but making efficient use of the time available.
Don Redding: Can I add quickly to that? The one thing that we hear again and again when we look into this is that people react with tremendous relief when, having worked their way around the system and finding out things that nobody was telling them, they finally locate that person for whom they have been looking. That person is somebody who will spend time and build up a picture, who will become for them the person who knows their stuff, whether that is diabetes or whatever, but who knows them too and who can help them with that negotiation between their circumstances and their preferences and what they might need from the system.
There is absolutely no reason why we should expect that always and ever to be a GP, because people can find that elsewhere. Specialist clinical nurses are often the nearest thing that people get to that. They are too often based in hospitals, I have to say, and should be more in the community, but it might be a Macmillan nurse or a dementia adviser. They do not need to know the full medical picture. If we can work out a system that is about a proper care planning process that you will get at some point in the cycle, but which can then be taken forward by that one trusted person, whether it is a GP, practice nurse, specialist nurse or a befriender and adviser-
Q134 Chair: A pharmacist.
Don Redding: It could be a pharmacist. There is no reason why that should not work, and that can give people someone who they feel can spend that time with them, who does understand them.
Q135 Dr Wollaston: My next question touches on those issues. There seems to be a consensus that we are hearing as a Committee that more health services, particularly for those with longterm conditions, should be delivered closer to the service user’s home and within primary care. In your experience, is that what patients welcome, or do you think that patients prefer to have more of their care taking place within secondary care?
Don Redding: There is no generalisation that would provide an answer to that. If you look at, say, surveys of people who have survived cancer and ask where they want their followup care, about a third might say that they are happy to use the GP. Another third may say they want to be going back to the specialist in the hospital, and another third may not have strong views. I just give that as one example, although it was from a survey some time ago.
Q136 Dr Wollaston: So you would say that we cannot generalise, in other words, the opinion for diabetes-
Don Redding: I do not think you can generalise. There is the fear of change, though. We support wraparound care closer to home, if it can be achieved, and we need to get the resources out of secondary care and closer to people. Obviously, however, people have a fear of change because, in particular, they do not want to feel they are going to lose access to a particular consultant or specialist nurse who happens to be based in a hospital trust.
Q137 Dr Wollaston: The other issue, of course, is capacity. I know, Liz McAnulty, that you touched on that when you were talking about how people want to have better access, in terms of the time of day they access primary care, but then they also want to have longer appointments. Of course there is a tension, because there is a work-force crisis within general practice, but there might be a tradeoff; but if you end up having appointments at different times of day you might find that there is less time available for those longer consultations. Do you have a view about that tension and those problems?
Liz McAnulty: Yes. It keeps coming back to the issue of selfmanagement. The vast majority of patients, particularly those with longterm conditions, already manage their own conditions for 99% of the time, and they would be capable of doing even more than they do. However, in order to manage-as any of us need to manage-you need to have information.
One of the things that we hear people being very anxious about in the general population through our helpline at the Patients Association is the further cuts to the service. There are all sorts of anxieties around and about, such as "We have only had"-we heard it mentioned this week-"25% of the cuts. What is the service going to be like when the other 75% happen?" To be realistic, we know that there is not enough resource to meet the growing need. Something has to give. Patients are very capable of understanding more information about exactly how much money there is going to be available for health and social care in two, three or five years’ time, so that they are not left a bit like children wanting the holiday in Spain when actually the parents cannot find the rent for the week. It is about enabling patients to manage their condition and to act as meaningful partners in their health care and social care relationships by making sure that they have the knowledge about the money and other resources available to be realistic about what their demands are.
I do not think that patients necessarily need longer visits. They need more effective visits from people who have read their notes. That is not a criticism of GPs or doctors necessarily, the vast majority of whom are doing an excellent job, but we frequently get complaints from patients that when they go to the doctor they are allotted only 10 minutes; they can only discuss one of their problems because they will not get more than 10 minutes.
Q138 Dr Wollaston: Sure. For you, therefore, it is an issue of the premium of time that we heard about from Dr Aitken earlier, about that and the continuity being valued.
Coming back to a point, you just used the term "cuts", but of course the Nicholson challenge was about redistribution and saying where that money went. Do you think that there is an issue about explaining to people that a service redesign shifts resource from secondary care to primary care? If we talk about that being a cut, it is a different terminology from saying that we are shifting that resource into a more integrated service that is primary care-based. That is a shift rather than a cut, but it feels like a cut, and the story that you hear is about the cut in a hospital service rather than there being a better service somewhere else in the system.
Liz McAnulty: Yes.
Q139 Dr Wollaston: How do you feel we can explain that?
Liz McAnulty: I cannot go into exactly how, although I think a key role for Health and Wellbeing Boards and the other new structures is to explain to patients more about why and how the changes are taking place. There is certainly anxiety among patients that there are cuts going on, and that it is affected by their age. Now a great deal is being done by doctors and other health care workers to disabuse people of that-that you will not be discriminated on the basis of your age. We are also aware that there have been surveys recently showing that there has been an increase in patient satisfaction with the NHS, but it is giving the information to patients in a meaningful way that needs to happen.
Q140 Dr Wollaston: You mean explaining where the service is, that it may have disappeared from one place but it is available and more appropriate within another place?
Liz McAnulty: Yes.
Dr Wollaston: Right, thank you.
Q141 Barbara Keeley: I have a question on social care, which I unfortunately think we have to describe as having been cut.
Could you tell us how important you think social care services are for those with longterm conditions, and how well served they are by social care departments currently? I understand that National Voices has said that people with moderate needs should receive funded social care. I think you will understand that that is difficult at the present time. My local authority is moving from "moderate", which it has preserved for a very long time, to "substantial" this year. If you want, you can say more about why you think people with moderate needs should be served.
Don Redding: It is part of the campaign ambition that not just ourselves but the Care and Support Alliance of which we are members-I am sure you know it well-have carried for some time. We appreciate how difficult it is to realise these things, but, while we have strongly supported the provisions in the Care Bill and worked to strengthen them and help them to align with health in a positive way, they will be less meaningful if it is such a restricted group of people that can access that set of entitlements. It is a campaign goal. It is not a budget that we have been able to fix, if you understand me.
Liz McAnulty: In answer to your first question, the social services are incredibly important, and patients value those services, particularly people with longterm conditions, most of whom want to remain at home as long as they can. We have come across some really good examples of where health and social services have worked together to make that work effectively, but there is also some concern.
I happened to be at the helpline when one of our staff took a call from a very distressed person on Thursday of last week. An elderly gentleman’s wife was being discharged from hospital, but he had just been told that she would need a carer to come in on three occasions each day to help her and that he would have to pay for that. He was really upset on the phone, and said that he had no idea that this was going to happen. There was clearly a lot of anxiety, and I understand from colleagues at the Patients Association that this is not untypical, and that there is considerable anxiety. Whether the anxiety is due to lack of knowledge of the service or in how these matters are being presented to patients, there is clearly a need for clarity for patients about what it is that they have to pay for and when. There is a builtin conflict if people have to pay for their social care but not their health care and there is going to be a drive for patients to stay in hospital longer than they need to. It is perverse.
Q142 Barbara Keeley: I do not know what others might think. From my case book, I would say that the shock of discovery of having to pay for things does hit quite a lot of people.
Don Redding: If I could just add to that, it is not only in social care but also in community health services that, essentially, we have seen that rationing bites hardest in the place where we want to start moving more resources to. The direction of travel has been wrong. We have a much reduced force of registered district nurses, for instance, and more use of health care assistants in that environment.
We have to place some hope and trust in the idea that, when making their plans for integrated care, people can look at the whole budget for a place. As I say, some of these places are big places and the budgets that they put together are big budgets, and the future in those places has to be to bring people together so that the boundaries between services become much less visible, particularly to the people who want to use the services but also to the people working within them.
Q143 Barbara Keeley: The second question is about carers and how you think they fare under current provisions, and specifically to what extent carers should have a voice in the design of services for those with longterm conditions. It has been reported this week that carers of people with cancer are often asked to perform health care tasks, such as administering drugs, without adequate training. Do you think that that is true across the range of longterm conditions, as seems to be the case with cancer? Do you have examples of the sort of tasks that carers are required or asked to perform that perhaps they do not have training for?
Liz McAnulty: The carers may be relatives or health care workers. Are we talking specifically about relatives?
Q144 Barbara Keeley: I mean unpaid family carers.
Liz McAnulty: Again, we have had a number of approaches from relatives, where they have gone in and have been told that they must come in and feed their aunt or mother or whatever. That is a real worry.
Q145 Barbara Keeley: If it was feeding a relative, you would not have a problem and you would not need to be trained how to do it, but administering drugs is a bit of a different thing, is it not?
Liz McAnulty: Yes. We know that administering drugs is done very often by carers at home, and there is some anxiety about whether they have the right doses. Of course the pharmacists are wonderful in the way that they present the medication, but there is still some anxiety. That is something that patients are very used to doing themselves, but it is difficult for some carers to have to clean up their mother or father.
Q146 Barbara Keeley: Personal care?
Liz McAnulty: Those kinds of situations, yes, but I think many carers do that all the time without mentioning it.
Q147 Barbara Keeley: The question was whether you think that carers should have more of a voice in the design of services, given their role.
Don Redding: We have to start looking at this in a different way. You have to start looking at, "Who is the care manager?" It is the person who is living with the conditions. "What is the care service?" By and large it is the carer; they are providing 90% of additional care. "Where is the support system?" That is family and community, so we need to think about how to mobilise that. Then we need to look at how the health and care services plug into that picture and support it. So, absolutely, I think that the principle of codesigning and coproducing health and well-being with groups in the community, with carers and with people with conditions themselves, is the way that we need to be going.
Codesigning is about a lot more than informing, consulting or occasionally engaging with people. It means that you take them into the shared vision and purpose of what you are doing, and they become equal partners in helping you to deliver it. Along the way, one of the benefits of that, touching back to Dr Wollaston’s question, is that people then gain an understanding of where it is that you are going, and they own that as much as you do. It solves your stakeholder engagement issues if people who are caring for or who have the conditions that you are redesigning the service for are saying, "This is what we want."
Q148 Barbara Keeley: You mentioned carers earlier in answer to Grahame Morris, in terms of the care that they provide, and as advocates. They are certainly providing the bulk of the care and then act as advocates. That is important, but do you think that there is a danger of losing track of the fact that they may be patients themselves, that they may have conditions, stresses and depression-their own conditions? Often in a family situation, it is the person who is slightly more well who does the caring, but it is very easy to overlook them, for everything to be centred round the patient and not seeing that the carer is a patient as well.
Don Redding: I am sure that is true.
Liz McAnulty: Yes, it is, but that is all the more reason why the carers should be involved along with the patients in designing the service. They know best what works in these longterm conditions, both for themselves and for the person they are caring for. They know what good service looks like, and they know where waste is occurring in the service, so they are ideally placed to be part of the design team.
Chair: You have been extremely helpful to us, and extremely patient with us as well. Thank you very much for both. We will reflect on the evidence that you have given in preparing our report. Thank you very much.