Improving Dementia Services in England - an Interim Report - Public Accounts Committee Contents

Examination of Witnesses (Question Numbers 100-119)


  Q100  Geraldine Smith: Can I say first of all I would like to be positive because I think there are some great strides made in the National Health Service overall, but this is an area that people are becoming much more concerned about. Awareness is very important. There is not a great deal of awareness about dementia. You say that early diagnosis would make a very big difference to people and it would mean them spending much less time in a care home at the end of their life. Why is that the case? What is different about it?

  Professor Banerjee: The public actually does not understand it. We have a major problem with respect to what people understand about dementia and there are fixed false beliefs, firstly that dementia is a natural and normal part of ageing, which it is just not. It is a disease that becomes more common with age but even at the age of 80 we have only got 25% of people with dementia. The idea is there that nothing can be done about dementia, when the fact is that there is a tremendous amount that can be done to enable people to live well with dementia. But in order to have that help you need to know that you have got dementia. You need to know that you have the illness. A major problem that we have in our system is that only a third of people get diagnosed, and when they do that is late in their illness generally, at a time of crisis, when it is too late to give people help. We have a system whereby people do not ask for help because they believe it is a normal part of ageing, where help is not available because services are not set up to do that; and there is an avoidance of making the diagnosis rather than facilitation to make that diagnosis. What we also found is models that show that this can change. It can change in particular areas. The strategy's first priority, first theme, was to improve public and professional attitudes and understanding of dementia, and that is a programme of work that started with the Worried About your Memory campaign that we set up with the Alzheimer's Society, and that is going to go into a much larger higher gear come March time. That will deliver a national media campaign that will help people to understand that it is legitimate to be worried about your memory.

  Q101  Geraldine Smith: Does the Report not say though that GPs' awareness has not improved?

  Professor Banerjee: I think it is improving a little. One of the things about this is that if you ask GPs to do something impossible, which is to make a diagnosis for dementia in primary care and to sub-type it, which is what you are asking them to do, they will not do it. If you ask them to do something possible, which is if you are worried about symptoms of dementia you refer people to a memory service to have a diagnosis made, then they will do that.

  Q102  Geraldine Smith: So you need those memory clinics.

  Professor Banerjee: You need the memory services and you also need the education, both in terms of the undergraduate curriculum for the primary care and other doctors, but also continuing professional development that improves the skill of our current medical workforce.

  Q103  Geraldine Smith: The specialist support services available once a person has been diagnosed—I came across a young person, a constituent in their fifties that had been diagnosed, and they were not being offered any specialist service until their condition had deteriorated.

  Professor Banerjee: There are major problems with quality of care provided for people with dementia across the country. What the strategy has done is given us a really clear picture of the warts that we have in our system, and also given us a plan to be able to deal with that. What that requires is someone to have accurate diagnosis as early as possible, plugging into services which exist and improving social care—things that will work across diversity, including younger people dementia and older people dementia. You only do that if you prioritise dementia, and the problems that we have are symptoms of the lack of prioritisation.

  Q104  Geraldine Smith: But I know, as a politician, that people talk about the Health Service and they want to know that they are not going to die of heart failure or a heart attack or cancer. The big killers are natural priorities and people are not thinking about dementia.

  Professor Banerjee: Dementia is one of the very few illnesses that people, if you talk to them, will rate as worse than death. Dementia is perceived as a worse illness to have than cancer, and it is the fact that people have not talked about it. The stigma of dementia has clouded everyone's desire to be able to talk about it so that we can do things about it. I think we are starting to dispel that and I think the strategy has identified that that is a legitimate area for us to intervene in. That is why there is this campaign to try and change that.

  Q105  Geraldine Smith: Do you accept, though, that there is still a long way to go between your strategy and what I see on the ground? What can I go back and tell my constituents who have relatives that might be suffering with dementia? What positive messages; what can you say has changed in the last three years; and what improvements; and where will we be in the next five years?

  Professor Banerjee: Is that a question to me?

  Q106  Geraldine Smith: I think all of you.

  Professor Banerjee: In five years' time I would hope that there would be a national network of memory services so that everybody, when they first have problems with memory, are referred to those services, and so that people know they have dementia as early as possible so they can get on with planning their own lives and make choices for themselves, rather than those choices being made for them later on at a time of crisis. I would hope that every general hospital would see dementia as a priority and see it as a legitimate part of what they do, because if they do it well they will do the care of their patients better; their quality will be improved by improving the quality for dementia. I would hope that every social services department would have a well-developed arsenal of services for people with dementia with which you could meet people's needs, both in people's homes and also in care homes when they need to. I would hope that we would have a third sector that was providing peer group support for people with dementia and I would hope that we would have systems to support people on the whole of their trip through dementia right from diagnosis to end-of-life care, delivering quality all the way . We could do that in five years but we can only do that with will and with a lot of concentration in delivering this. I think the strategy, if it is delivered, will deliver that.

  Mr Behan: We set out to deliver seven priorities as part of the strategy to ensure that we could be focused in the way that we move forward. The seven areas were: early diagnosis, the questions you have been asking about memory clinics; how we can improve community based services; the services that are there to support people living in the community with dementia; how we can continue to deliver and roll out the carers strategy to support people who are providing direct care to people with dementia; key challenges around general hospital care; psychiatric liaison services which exist in hospitals to ensure that exactly those people with fractured neck of femur are being assessed by a clinical specialist in psychiatry; how we can improve the quality of people's experience in care homes. We have about 240,000 people living in care homes. About 60% to 80% of those have some degree of dementia, so getting the quality of those services right.

  Q107  Geraldine Smith: Do you still have the problems with the liaison between health and social care because that still feels a problem to me?

  Mr Behan: We continue to insist, as Professor Banerjee has outlined, that this is a strategy that goes across health and social care.

  Q108  Geraldine Smith: You can say that but what I am asking is how is it actually working?

  Sir Ian Carruthers: I can talk about the South West but I know this to be the case in different parts of the country. Dementia, if you have someone in your family who has it, which I have, is the most difficult thing to deal with because not only do you see the person disappear but you also see those around them struggling to cope with something that they cannot cope with. The thing that I would actually say from my personal journey in this is the priorities are in here but we need really to systematically, at scale and pace, change some of them. The Strategy here was about two years in preparation and I think that even the Report says that it is too early to see front-line change on the ground, but it is front-line change on the ground that is actually crucial. As to where we are on health and social care, there are good examples. If you go to Torbay, where there is an integrated arrangement, you can have very fast decision-making after your assessment. Normally it takes three or four weeks; there they do it in a few days. You get very quick access. Hertfordshire, too, if you look at them as an example, they have put in an alignment of process so there is good practice between health and social care.

  Q109  Geraldine Smith: Can I stop you there because what I am concerned about is Lancaster and Morecambe and the surrounding areas that I represent. I want to make sure that they have really good care. Is one of the problems that there are different standards across the country and even the drugs that can slow down dementia, in different parts of the country people appear to have easier access. That cannot be right. That has got to change.

  Sir Ian Carruthers: I cannot speak for Morecambe and your constituency but I think that there is an issue where we should have more common standards across the whole social care horizon. However, I gather that will be a subject of great debate as we head over the next few months, because people do get different things and there are different things on offer. I know from going through this that whilst people think there is a lot of community support available, when you are faced with it, it is not as great as you think, and indeed, the Report says in here that ends up with too many people prematurely being in residential care, so we need to develop those services in order to implement this Strategy.

  Q110  Geraldine Smith: Can I say the most hopeful comments were the comments you made about where you would like to see things in five years' time.

  Professor Banerjee: Thank you.

  Q111  Geraldine Smith: If you can achieve half of that I think we will have gone a long way, but I guess it is also very expensive.

  Professor Banerjee: What we want is for those changes to be in every part of the country so the variation that exists in terms of likelihood of getting a diagnosis and getting various sorts of treatment is evened out and we lose that variation so that everybody gets good-quality care.

  Q112  Mr Mitchell: Can I just pursue that point about regional differences in prescribing. Sir Ian seemed to be saying we wanted uniformity, that people should have access all over the country to the same prescribing. Is that what you were saying?

  Sir Ian Carruthers: What I was saying was that regardless of where we live we should have access to the same standards.

  Q113  Mr Mitchell: That is not happening, is it, because at page 17 the Report says there are regional variations suggesting that people in some parts of the country who might benefit from the drugs are not receiving them. Why is that?

  Sir David Nicholson: Ian is responsible for the South West and he can tell you what the position is there.

  Sir Ian Carruthers: In the South West we have the big challenge because of the diagnosis gap. We have a fairly elderly growing population. The diagnosis gap is significant, as this Report says. That is where we have to go back, and if I can connect these things, and get GPs trained to identify people to come forward and receive treatment. The low use of some of the drugs is actually because we have low diagnosis because early diagnosis requires, in the main, early treatment and intervention, so what we have to work on, and others in the country, is really getting dementia diagnosed much earlier, and that is very much a staff training and particularly medical training issue, as Sube said before.

  Q114  Mr Mitchell: Can you supply us with some figures on that, in other words, the proportion of cases that is getting prescriptions over the country? It is not supplied in figure 7 on page 17 because that says it is meant to prove that people in some parts of the country who might benefit from them are not receiving them, but, in fact, what it says at the bottom is that this is a measure of "defined daily dose per diagnosed dementia patient". In other words, people in Yorkshire and Humberside are getting bigger doses than people in the West Midlands. It does not tell us how many people are getting the doses. It just tells us the doses are bigger.

  Professor Banerjee: I think this is a metric that is designed to show a good estimate of the proportion of people who would meet NICE criteria for the treatment of dementia who are being treated with drugs, and showing that it varies across the country.

  Q115  Mr Mitchell: Why are they getting bigger doses in Yorkshire?

  Professor Banerjee: There is more of the drug prescribed per person with dementia but there is very little prescribed per person with dementia, so what that means is that on average there are more people being initiated on these medicines in Yorkshire and the Humber than there are in the West Midlands. It is not about the dose of the medicines as such; it is about the number.

  Q116  Mr Mitchell: That is not what it says it is.

  Professor Banerjee: I know but that is because it is using the dose as a way into the amount of drug that is prescribed there.

  Q117  Mr Mitchell: Can we have the figures in a less confusing form?

  Professor Banerjee: These are National Audit Office figures.

  Q118  Mr Mitchell: Of the number of people who are getting prescriptions in each area.

  Professor Banerjee: There are data on that which are included in the Dementia UK report.

  Q119  Mr Mitchell: Can we have them?[3]

  Professor Banerjee: Yes, those are perfectly available.

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