Examination of Witnesses (Questions 20-39)
NATIONAL HEALTH
SERVICE
15 OCTOBER 2007
Q20 Chairman: So why are between
half and two thirds not receiving a carer's assessment, as they
are entitled to?
David Nicholson: We believe
that the position on dementia is better than that, based on—
Q21 Chairman: That comes from paragraph
3.18, which again you have accepted by accepting the Report.
David Nicholson: That is
about carers in general, rather than—
Q22 Chairman: So you are now going
to deal with this problem, are you?
David Behan: If I may help,
Mr Chairman, I should like to say five things on the work that
we are doing with carers. We have spent more than £1 billion
on carers since the Act was passed, and this year we shall spend
£185 million on extending the work that we have been doing
on the carer's grant to local authorities. The five things that
we are doing at the minute are: first, reviewing the Prime Minister's
strategy on carers, which we shall publish in the new year; secondly,
expanding the telephone helpline that is there to signpost carers
to the appropriate help; thirdly, carers have often told us that
they need help with access to emergency care at very short notice,
and we are making resources available to local government to expand
emergency care; fourthly, preparing carers so that they have the
skills to secure their support through the development of an expert
carers programme; and, lastly, developing proposals for a standing
commission on carers, which will be made up of people outside
Government, designed to challenge us.
Q23 Chairman: Excellent answers.
Will you now please answer the question that I asked, Mr Nicholson?
David Behan: If I could help
again, Mr Chairman—
Q24 Chairman: Why are between half
and two thirds of unpaid carers not receiving a carer's assessment,
as they are entitled to under the Carers and Disabled Children
Act 2000?
David Behan: All the evidence
is that there has been an increase year on year since 2000 in
the number of assessments carried out. The number of assessments
offered to people is about 380,000—
Q25 Chairman: That does not answer
the question. You are saying that there is an increase; you have
not answered the question that I put to you. Why are between half
and two thirds of unpaid carers not receiving a carer's assessment,
as they are entitled to under the 2000 Act? You just have to say,
"They are not, and I am going to deal with it." That
is all that you have to say.
David Behan: We acknowledge
that people are not receiving the assessments—
Q26 Chairman: Good. And you are going
to deal with that.
David Behan: And the work
that I have just described is part of the package to increase
that.
Q27 Chairman: Right. Thank you very
much. One last question from me. The Lincolnshire study was obviously
very successful, as shown in appendix six. Are you going to make
that best practice now throughout the country?
Professor Banerjee: The Lincolnshire
case study is an interesting and useful whole-systems approach
to locating people with dementia in a particular health system,
attaching costs to those individuals and working out whether they
would be best placed in other places. The data from the case study
are similar to those from other studies that have been carried
out in general hospitals, from which we know that people with
dementia spend longer on wards and have higher re-admission rates.
We know that focused work with those individuals, to ascertain
their diagnoses and tailor both their treatment and rehabilitation
to the needs determined by their dementia, will enable them to
leave hospital earlier. The value of the Lincolnshire case study
is that it quantifies that for a particular area, and it is encouraging
that local health commissioners are interested in taking the potential
savings from that and reinvesting them in community services.
Certainly, the whole thrust of the work that we will do with the
dementia strategy is to identify areas where care can be better
provided. A lot of evidence suggests that a greater focus on diagnosis
would help people at all stages, including when they are in acute
hospitals.
Q28 Angela Browning: I should first
declare an interest as a vice-president of the Alzheimer's Society.
Returning to Mr Behan and the question
of carers, I want to pick up on something. Whatever extra money
is being spent, it is patently obvious at local level that placements
in community hospitals—they are often managed by the local
GP service—which are one of the resources that are available
for respite care if carers have an emergency or are simply worn
out, are rapidly drying up and are no longer available for dementia
cases. We know that there is a shortage of spaces in nursing homes.
In fact, there is not just a shortage of spaces; there are very
few spaces with the closure of nursing and residential homes.
You have identified extra money and said that will be spent on
supporting carers in this area, but where will the beds come from?
David Behan: The work that
we will do at local level will be for health and social care to
come together to identify the needs of people with dementia and
Alzheimer's and the needs of their carers. One of our expectations
is that that assessment will enable plans to be made for how best
to put services together. You have already referred to the work
in Lincolnshire, and Professor Banerjee has referred to the work
that is being done in other places. It is from that analysis that
we expect local services to be designed and developed to meet
those needs.
We know from speaking to people—I
guess that you know this from your work with the Alzheimer's Society—that
some people are looking for emergency respite and support not
just in institutions, but in their own homes. An awful lot can
be achieved through organisations such as the Princess Royal Trust
for Carers, and Crossroads, when practical assistance, often by
friends, neighbours and relatives, can be provided to people in
their own homes. That will obviate the crisis, and allow carers
some respite and the individuals with Alzheimer's or dementia
some support by people they already know. We are looking not just
at institutional care as the basis for respite and emergency care;
we are also looking laterally at support that can be provided
within the community.
Q29 Angela Browning: One of the wards
in one of my local community hospitals that deal just with dementia
patients has closed this year, and one of the reasons given for
that closure was the hospital's inability to recruit suitably
qualified staff to man that ward. If we transfer most of that
work to the community and the people you have just identified,
and if the health service could not supply suitably qualified
people to meet the necessary standards of care that patient group,
how will neighbours and other volunteers provide that standard?
David Behan: Clearly, people's
level of dependency is different, and I am sure that Professor
Banerjee would share the differences with you. Some of our work
this year has been on prevention pilots, and five of the 29 pilots
focused on working with people with dementia. A number of those
schemes have been successful in maintaining people in their own
homes. We acknowledge in our work over the past few months that
equipping the work force with the necessary skills to provide
appropriate care is an important part of the work. I referred
earlier to the expert carers' strategy, which was designed exactly
to equip not just the work force, but carers with the skills to
care. We are optimistic that by rolling that out we can provide
a range of provision for different circumstances and needs. We
acknowledge that development of the work force is an important
part of what we need to do, and part of our work on improving
the quality of the strategy's service will take forward our thinking
on that. We will ask the expert reference group that we have set
up as part of our arrangements to contribute their views on how
we can take that forward.
Q30 Angela Browning: It seems a bit
topsy-turvy to me to close a facility before you have the alternative
in place. Will that be the nationwide experience?
David Behan: We are determined,
in announcing the strategy, to give a clear sense of direction.
We are doing that in an inclusive way. People from the Alzheimer's
Society and carers' groups are involved in the work, and we are
pretty determined to ensure that the strategy captures the elements
that people who have Alzheimer's and their carers feel are important
to support them.
David Nicholson: It is worth
saying that we are learning some quite hard lessons in relation
to all this. You are absolutely right. Certainly in my conversations
with carers and people interested in this sort of issue, they
say, "We like the look of your exciting, interesting community
service, but don't you dare take away our existing service until
we are satisfied." That is reflected in the Darzi Report
and what Ian Carruthers said in his work. It is increasingly what
the expectation of particularly the NHS will be—to be able
to demonstrate that before we close other services.
Q31 Angela Browning: That may be
the expectation, Mr Nicholson, but it is not what is happening
out there.
David Nicholson: I am saying
that it is one of the lessons that we are learning from what is
happening at the moment, and that is why we have said what we
have in the Darzi Report.
Q32 Angela Browning: In terms of
playing catch-up as far as the NHS is concerned, is it NHS policy
that there will be no more respite in, for example, community
hospitals?
David Nicholson: No.
Q33 Angela Browning: Moving on from
that, I am very concerned about the situation with GPs, because
we see some very interesting figures in the NAO Report. For example,
on page 7 at paragraph 13, we see that GPs' confidence in carrying
out a diagnosis has fallen since 2004. I wonder what you think
the explanation for that is.
David Nicholson: In a sense,
this reflects what I said in the initial answer about the confidence
of professionals to deal with these kinds of issues. There is
no doubt that there is the same amount of training and support
for GPs in these areas, but they are becoming more complex and
GPs do not feel as confident. I do not think that anything has
happened to the system to enable that to be the case, because
GPs, for example, are now supposed to have a register of people
with dementia. I think that they are having to address these issues
directly for the first time and that that is what is leading to
a reduction in their confidence in dealing with them.
Q34 Angela Browning: I found rather
strange the fact that they were losing confidence in carrying
out a diagnosis, because of course GPs see people who present
sometimes with quite complex symptoms and one of the things I
would have hoped of our primary care system is that GPs would
be the gatekeepers to the service. In other words, we do not always
expect GPs to be the person who gives the diagnosis, but we do
expect them to make an appropriate referral. I see on page 9,
in relation to memory services recommended by NICE, that 69% of
GPs were aware that they could refer a patient to a memory service.
If their own confidence in carrying out a diagnosis is reducing,
why are not more of them referring to somebody who can say, "Yes,
it is dementia"? Why is there a conflict in those two sets
of stats?
Professor Banerjee: Perhaps
I could start off on that, because I think it is a very striking
finding from the Report that GPs' confidence has decreased over
that period. I think that it is quite possible for people's confidence
to decrease as their knowledge about dementia increases. I think
that GPs' knowledge about dementia has increased in the last five
years. It used to be the case that people thought of dementia,
and thought of making a diagnosis of dementia, only in terms of
the most severe state of dementia, so right at the end of it when
people have very little in the way of memory, have very clear
impairments of their function and maybe have all sorts of other
behavioural problems in dementia as well. At that point, it is
relatively easy to make a diagnosis of dementia, because of the
severity of it.
One of the things that has become clear
is the need to make those diagnoses earlier and the fact that
it is possible to make diagnoses quite early in dementia now.
However, it is more difficult to make those diagnoses earlier
in dementia. The earlier it is, the more there is the need for
specialist input into making the diagnosis of dementia, so I think
that those GP results are explicable in terms of the field developing
and an acknowledgement that diagnoses need to be made earlier,
which is a more complicated thing.
The important point that comes from that
is the second point that you were making, which is about who should
make the diagnoses. It is a terrifically important point, which
has not been directly addressed by much of the work in the area,
including the excellent NICE/SCIE clinical guidelines. One thing
that our strategy will explicitly address is who should make the
diagnoses of dementia. Should it be a primary care diagnosis,
or should it be a diagnosis that is made by a specialist, which
could be GPs with a specialist interest or neurologists or geriatricians—whatever,
but a diagnosis that is made by a specialist service—with
care then carried on it the rest of the community? That question
is yet unanswered. There is tremendous variation in activity,
but there are good examples in the country of systems that have
been set up to deliver diagnoses early, accurately and effectively,
communicating it in such a way that individuals feel supported
through the process and walk with good-quality information into
living the best life that they can with their dementia. The Alzheimer's
Society has been part of putting those processes in place.
Q35 Angela Browning: Chairman, I
should like to pursue one or two questions with Professor Banerjee,
but I might ask you if I can dip back in after others have had
their chance to talk.
I take a particular interest in mental
health, having served on the Mental Health Bill Committee and
the scrutiny committee. One thing that we know really works is
when a GP practice has a community psychiatric nurse or someone
from the mental health services attached to the practice so that
there are not long waits for referrals. Would you, Professor Banerjee,
envisage that if, as the Government have promised, there is more
involvement of mental health services attached to GP practices,
they would deal not only with depression, but with dementia patients?
Would that be a help?
Professor Banerjee: You really
hope that they would, absolutely, because the case management
of dementia, following on from diagnosis, must be a collaboration
between primary care and secondary care. One thing that old age
psychiatry services throughout the country have done very well
is learn to work with primary care. It is an entirely community-based
service, and there are very good links. The focus of the strategy
will be to ensure that there is sufficient capacity within the
system to work with people not only at the most severe and complicated
end of the spectrum, which is where mental health services have
often rationed their care, but at the earlier end of the spectrum,
whereby good-quality support there may prevent harm further down
the line. I am agreeing with you—in a long-winded way.
Angela Browning: I have about a
dozen other questions, but I shall try to distil them, Chairman,
for later. Thank you.
Q36 Mr Touhig: Mr Nicholson, the
Chairman referred to figure 13 on page 26, where we see that as
few as one in three people with dementia receive a formal diagnosis,
and that at best it is 50%. Do you not find that totally unacceptable?
David Nicholson: Absolutely.
It is one of the main reasons why the Government decided to identify
dementia as a priority.
Q37 Mr Touhig: We agree that it is
unacceptable, we agree that it is a priority, and we spend more
on dementia care than we spend on cancer, heart and stroke combined,
yet under a ranking we are in the bottom three EU countries for
dementia care.
David Nicholson: Absolutely.
We spend most of our money at the most complex end rather than
upstream.
Q38 Mr Touhig: Why are we so far
behind then? We are behind Italy, France, Spain, Germany.
David Nicholson: There are
a series of reasons. The first and most obvious is that our services
often reflect a history of services in this country, where, historically,
mental health services were focused in large institutions dotted
around the country, and there was relatively little development
of community services for that group of patients. Most of the
focus on improving mental health services over the last few years
has been focused on adults. But under the age of 65—
Q39 Mr Touhig: There are 560,000
people in England with dementia, and that will rise by 30% in
the next 15 years. The Alzheimer's Society says that it will rise
by 40%. It is not something that has arrived on the horizon; it
has been there for some time.
David Nicholson: It is—
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