Examination of Witnesses (Questions 60-79)
NATIONAL HEALTH
SERVICE
15 OCTOBER 2007
Q60 Mr Touhig: They are being sedated,
aren't they?
Professor Banerjee: When
managing people with dementia, drugs are part of the management.
They should be only part of the management. The guidelines that
we have very clearly state that it is very important that individuals
should try psychological and social methods of managing behavioural
problems before resorting to medication. I have concerns about
the findings you are talking about. There needs to be better coherent
input from mental health services into care homes wherever they
are, so that we can ensure that those people with dementia who
have behavioural problems, in those care homes, receive these
sorts of medications only when they really need to. I think there
is every possibility that much of this medication use could be
decreased by effective liaison with community mental health services
for older people going into care homes. The third part of our
strategy is all about delivering good quality care, and that has
to include care homes and the right management of behavioural
problems.
Mr Touhig: That is a very helpful
answer but I still do not know why you tolerate what happens in
care homes.
Q61 Dr Pugh: In terms of the population
of people with dementia, they are going to be known to a number
of different agencies, are not they? They are possibly going to
be known to their GP, the mental health trust, the acute trust
and social services. Are there any sort of general stats or profiling
that you have done, that show exactly how many agencies a person
may be known to, once they show signs of dementia, or how many
agencies they are in contact with?
If I can follow that through: if they are
in touch with multiple agencies—because they may be in the
local hospital from time to time, they may also connect with the
mental health trust and they may also have contacts with social
services—is there a concern about there not being somebody
who is primarily responsible, and if there is, should that primary
person responsible for their care and health be their GP, or someone
else?
Professor Banerjee: People
with dementia have all the problems that older people have, so
they will be in touch with multiple services, just as older people
are. Everybody has a GP. People have episodes of acute illness;
they will need to go into hospitals; they have accidents. But
they also have the problems that come with dementia; and the inevitable
progressive decline of dementia, which means that individuals
lose functional ability and need support, means that they are
much higher users of social care—both community-based social
care and social care in care homes. What this means is that there
is this complex web, and, essentially, the more complex the case
of dementia, either because of severity or because of co-morbidities—either
physical problems that they have, or psychological problems—the
more individuals will be involved.
The process of care management for dementia—of
helping the carers to juggle that complex web of care—is
a really complicated task, and many carers find being presented
with that very difficult. What they need is help to do that. The
GP is the default setting for managing these sorts of care. Obviously,
it is wider than the GP; there is a primary care team that can
help with that. I think, in dementia—and this is one of
the things that comes out of the National Audit Office Report—that
in some cases it may be that a more specialist approach to case
management and care management might be more effective in the
longer term.
The one thing that clearly comes out from
talking with carers and people with dementia is the desire to
have a single point of contact to help with care. One of the challenges
that we will face in formulating the strategy is how to ensure
that there is such an individual who can go from the time someone
is diagnosed—which may be quite early, when they are in
touch with no services, or only very simple services—right
through their 12 or 14-year career with dementia. So I think there
is a case for those specialist services that are engaged at the
beginning in making the diagnosis, continuing to have a role as
the dementia progresses; but that clearly has to be one that works
very closely with the whole primary care team, in order to be
able to deliver care, because the physical needs of the individual
need to be met, as well as their mental health needs and dementia
needs.
David Nicholson: There are
different models that work in relation to this, if you look across
the country. Some are very well rooted in primary care and some
are rooted in secondary care, but I think Sube is absolutely right:
wherever you go, what carers say is that they want one point of
contact. People will say in the service that one of the issues
about dementia and our progress with it is that nobody owns the
issue in the system. So it is vital that we get this right.
Q62 Dr Pugh: That person need not
be the GP. Could it be for example someone attached to the GP's
surgery?
David Nicholson: I have seen
it operate where it is a community psychiatric nurse; I have seen
it operate where it is a health visitor; I have seen it operate
where it is a GP; and we have seen it operate where there is a
multi-disciplinary team from a secondary care perspective. It
can work in all those areas, and Sube and his team are going to
look at these, and see which is the most effective for the patients,
but also what is most effective for the carers, and come up with
a set of recommendations in his strategy.
Q63 Dr Pugh: May I go to the issue
of diagnosis which has been dealt with by a couple of my colleagues?
GPs are less confident, people are severely undiagnosed in care
homes and when they are admitted to acute hospitals mental health
problems often go unnoticed. Is there not a limited motivation
to come up with a diagnosis, because if the diagnosis is arrived
at there is little in the way of efficacious treatment? Is one
of the reasons why GPs are slower to make the diagnosis because
even if they do so they have little to offer?
David Nicholson: I can only
offer this as a general point. I went into this issue with a similar
question: what incentives are there in the system to identify
these people because you would have to provide lots of services
for them if you did? In actual fact that is not the case. Higher
levels of identification do not necessarily mean that more services
are required, but rather people require relatively small amounts
of service when they need it. I do not believe that the service
is operating in that regard. Historically, if you look across
the country, investment is more likely where a small band of enthusiasts
have worked really hard and fought for it.
Q64 Dr Pugh: If you get an earlier
diagnosis, will the effect simply be that the case is better managed
and the person's needs will be better seen to, or will it genuinely
be the case, and is there empirical data to support this, that
the onset and development of dementia can be retarded or slowed
down?
Professor Banerjee: No, we
have no treatments at the moment that can either arrest or reverse
the dementia process or even slow it down. But to focus on the
need to do that as the only thing that might be positive for people
with dementia is to miss a whole world of positive interventions.
You talked about just meeting the people's needs better. There
is no "just" there. That is a gigantic thing to do.
Dr Pugh: I am sorry. That was poor
phrasing.
Professor Banerjee: There
is a widespread misconception that there is no value or there
is only little value in the social and psychological elements
of intervention that can be deployed. It is simply not true. One
of the things that is really good about the NAO Report is that
it makes that clear. This is one of the public misconceptions
that we need to nail in the strategy because there are good things
that can be done. People need to understand that there is value
in making the diagnosis so that individuals can avail themselves
of those positive interventions.
David Nicholson: That is
absolutely true. Speaking more recently to people who have used
the memory clinic services that Sube operates, all patients said
that it improved their confidence. That is a massive thing for
people generally and for that group especially.
On the wider issue about the system, there
are two points. There are talks in the NAO about a business case
for investment in dementia. One of the things that the working
group is working on is a business case which sets out investment
early and the benefits to society, the public sector as a whole
and the NHS, of making that investment early. There is some useful
work showing that it is beneficial, but some years down the line.
A second piece of work has already started which is reflected
in the Lincolnshire work. It sets out to the NHS in the short
term that there are benefits if you intervene and manage dementia
earlier for patients: you get less admissions to acute hospital
and less intervention at that level.
Q65 Dr Pugh: Thank you. I have only
two minutes left and I want to put two relatively quick but quite
different questions. The GP gets QOF (Quality and Outcomes Framework)
points for managing the condition a little bit better. Are you
convinced that the system of awarding those points, and so the
remuneration that comes with it, is effectively assessed and measured?
We have all acknowledged that the decline of the patient will
carry on as it will in terms of their physical condition. How
can one legitimately encourage those GPs who intervene successfully
to ameliorate the general background conditions of the patient
and those who do not?
Mark Britnell: The original
statement from the Chair was that the analogy was cancer in the
1950s, and the question was whether people will continue to place
their heads in the sand because this simply means more cost and
more hassle. The first thing to say is that there is obviously
an emerging evidence base now, from both the NAO and the "Dementia
UK" Reports, which makes it easier for clinicians and other
professionals to present a clearer evidence base for investment
to local commissioners be they in health or social care. As Mr
Nicholson said, we are this year guaranteeing that there will
be a specific commitment for PCTs to produce a commissioning framework
for dementia in the operating framework for 2008-09.
On GPs, QOF points at the moment stand
at only 20 out of 1,000. Clearly, because that is set to double
or treble in size over the next 20 or 30 years, as Ara Darzi will
announce in the next stage review, we will look at the clinical
evidence base for QOF points.
Q66 Dr Pugh: You are convinced that
the money is being well spent. My final is question is simply
that co-morbidity associated with mental health often occurs alongside
dementia, but is often masked by it. What percentage of mental
health patients are known by the NHS to have co-morbidity—in
other words, some other psychological malaise apart from dementia?
Do we know?
Professor Banerjee: In those
people with whom we are in contact, we do know, and we have good
epidemiological data as well. Probably about 20% of people with
dementia of all sorts have depression at any one time in their
illness. That depression can be treated with anti-depressants,
and other psychological treatments if it is early in the illness.
In terms of psychosis, it is probably more like 6% to 10% of people
who have that at some point in their illness.
Q67 Dr Pugh: Is the answer about
30%?
Professor Banerjee: Overall,
yes, if we are talking about all co-morbidity including psychosis
and anxiety.
Q68 Mr Davidson: May I ask about
the pattern of dementia? Is there anything in that that would
be helpful to our understanding of this? Is it predominantly urban
rather than rural, or north rather than south? Are there any discernible
differences?
Professor Banerjee: What
is striking about dementia is that it is only really associated
with age. If we know the age structure of the population, we know
what the relative levels of dementia will be. That is made clear
in the "Dementia UK" Report. Dementia occurs in men
and women and across the class divide, so it happens to rich and
poor people, and it happens in the developed and the developing
world.
There are suggestions that higher levels
of educational attainment might be slightly protective, but many
people with extremely high levels of attainment go on to develop
dementia. In epidemiological terms, it is important that a proportion
of dementia, perhaps between 20% and 30%, has vascular causes.
What is good for your cardiovascular health is generally good
for your mental health, because there are vascular risk factors
for Alzheimer's, which is in turn a risk factor for vascular disease.
Apart from the longevity of the population and its cardiovascular
health, there is little to determine whether people develop dementia.
Q69 Mr Davidson: May I clarify or
query one of those points? You said that there was no correlation
with social class, but longevity is associated with social class,
so presumably lots of poor people in my area will die before they
get Alzheimer's.
Professor Banerjee: You are
absolutely right. My point was essentially about what has an independent
effect when we create a model that controls for all of the factors.
The effect of class seems to be mediated through, for example,
smoking behaviour and cardiovascular health, and your life expectancy
is lower, so you have less time in the stage of life when you
are most likely to develop dementia. You are right, but taken
as a whole, if you are poorer, you are more likely to develop
dementia if you live to a particular age.
Q70 Mr Davidson: For poor areas such
as mine, where more people die earlier, dementia would not be
as much of a priority as it would be in prosperous areas, where
people tend to live longer.
Professor Banerjee: You are
talking about minute differences. The difference in life expectancy
between poor and rich areas is between the 70s and 80s.
Q71 Mr Davidson: No, it is not. Life
expectancy in my constituency is lower than the expected age to
which the pension age will rise by the end of the decade.
Professor Banerjee: The exponential
increase in dementia happens around age 60 to 65, so it is the
years lived afterwards that count.
Q72 Mr Davidson: May I ask about
the extent to which dementia can be cured, particularly by contact
with lawyers? I am thinking in particular of Ernest Saunders and
General Pinochet. There was a lot of discussion at the time about
those miracle cures. Was it misdiagnosis in the first place and
a sharp lawyer, or was there anything medical about those cases
that might be of interest to us?
Professor Banerjee: I was
not personally involved in those cases, but I can tell you—
Mr Davidson: I was not suggesting
that you were General Pinochet's surgeon.
Professor Banerjee: No, but
what I can tell you is that dementia does not get better. In some
forms of dementia, month on month, one might get a little bit
better and then a little bit worse, but the definition of dementia
is a progressive decline. Sometimes it is a bit stepwise, sometimes
a bit wiggly and sometimes a straight line, but dementia is decline,
and there is nothing that makes it go away.
Q73 Mr Davidson: Paragraphs 4.1 and
4.2 refer to whole-system working, and the point is that whole-system
working should be apparent in this area. Paragraph 4.2 has a quote
from somebody in a focus group who said: "I receive different
phone calls from different professionals about the same issues,
and no one knows anything about the others. It's just a continual
round of questions." That seems to sum up so much of the
health service. Is this area any worse or better, in terms of
people not talking to each other, than others? In health and social
care services, it has always struck me how much people operate
in silos and are precious about their own element of the situation.
They do not want to communicate, or are unable to. Is it any worse
here than anywhere else?
David Nicholson: While that
is a quote, I could take you to places where the exact opposite
happens and people are very satisfied with the way that services
are integrated. But it is true that it is a common criticism of
health services, particularly for long-term conditions, where
a whole series of agencies are involved.
I do not know whether it is any worse for
dementia. My guess, having studied it more recently, is that it
probably is, largely because there are interfaces between primary
and secondary care; social care, the voluntary sector and health
care; and mental health and generic services. Where all those
link is where I think you get the problem. That is why, to me,
it makes an overwhelming case that a care management approach—where
an individual or a small group of people co-ordinate the care
for patients—is absolutely central to getting the strategy
operating.
Q74 Mr Davidson: I understand the
point that it is a particularly complex area with a number of
participants, but there must be many areas in the health service
where the same applies. Is it worse here because the matter has
been less of a priority for the centre to focus on? Have people
therefore been able to get away with bad professional practice
that they did not get away with in areas of the service that get
a greater degree of attention and priority?
David Nicholson: There is
no doubt that there has certainly been less attention to making
it happen. As for whether it has turned out in practice to be
worse, I would guess that it has, but I do not know directly.
Do you have anything to say on that, Sube?
Professor Banerjee: It is
more complicated in dementia cases. Co-ordinating care is complicated
in dementia, but it is not impossible. One thing that one does
have in cases of dementia is time, if it is an individual's job
to help bring together the elements of care, and if people have
the most important element of information, which is that the individual
has dementia. One cannot expect a person with dementia to respond
in a way that a person with dementia would not respond—you
send an invitation saying: "Come to this place at this time,"
and if the person with dementia is living alone, there is no chance,
or very little chance, that they will do so. You need the information
that somebody has dementia and to factor that into how the systems
work, and then you can get good quality care out of the system.
Q75 Mr Davidson: You made the point
that this was not necessarily universally true, and that there
are examples of good practice and so on. Is there a mechanism
by which good practice is disseminated, or does it just grow and
blossom on its own?
David Nicholson: There are
all sorts of levers around for good practice. The most obvious
one for mental health is CSIP—I hope that someone will remind
me what it stands for.
David Behan: Care services
improvement partnership.
David Nicholson: Yes, that
organisation is responsible for doing that very thing in relation
to mental health services. The issue is that it has been predominantly
focused on 16 to 65-year-olds, rather than over-65s, with the
activities that it has got. This strategy gives us an enormous
opportunity to take that forward for dementia.
Q76 Mr Davidson: The final area that
I want to touch on—this relates to the service being a Cinderella
service—is the section dealing with the access to and quality
of domiciliary care, which could be improved. To what extent is
the fairly damning indictment of staffing provision in the service,
in paragraph 3.15, an indication that it really is seen as a Cinderella,
low-priority service that nobody really pays much attention to?
Does it not indicate that staff in this section are considered
almost as the lowest of the low?
David Behan: Certainly, 70%
of the social care work force is without qualification, and many
of them are without training. In my earlier comments, I addressed
the importance of equipping the work force with skills. The sector
skills council for the social care sector is Skills for Care—
Q77 Mr Davidson: How did we get into
the situation in which 70% are on the lowest wages and have the
least training? Presumably that did not happen out of the blue
one day.
David Behan: The evidence
is that they are not now on the lowest wages. A lot of the staff
will be paid above the minimum wage.
Q78 Mr Davidson: I was asking how
we got into that position. I understand your point that it may
be getting better, but it was not right then. I am trying to clarify
why it was in such a mess when the Report was written.
David Behan: The history
of the home help service, to go right back, was that it started
as a nursing service for Jewish women during the first world war.
As it went on through the '40s, '50s and '60s, it delivered practical
help to people in their homes, such as lighting fires in coal-mining
areas for coal miners who could not light fires. In the '70s,
and particularly in the '80s and going into the '90s, that kind
of provision was not required.
Figures show that the home care services
focus increasingly on maintaining people in their homes, so we
provide support to a smaller number of households, but those households
are getting an increased number of hours. The task is no longer
giving practical assistance such as lighting fires, but assisting
with personal care—bathing, toileting and feeding, et
cetera. So, we in the social care sector have been faced with
equipping those social care staff, or domiciliary care workers,
with the skills to provide that intimate and personal care. So
you will find, for instance, training courses through all employers
on things like lifting and handling, appropriate bathing and appropriate
control. The challenge around the dementia figures is to begin
to ensure that those staff are able to recognise and acknowledge
dementia and provide that service.
Q79 Mr Davidson: I understand all
that, but I wanted to clarify whether you thought that it was
simply because the work was seen as women's work that it was given
a low value and was low paid, or whether other issues were at
play that might have implications for other parts of the public
service. Clearly, I am not going to get much out of that.
Will you clarify how it is that we are
being told in the second section that: "the high number of
home care staff without English as their first language"
have communication problems, notwithstanding that communication
skills are: "a requirement of the Common Induction Standards"?
If the common induction standards are adequate and people are
meeting them, why are there still communication difficulties?
Are people cheating the tests? Are the test standards too low?
Nothing could be more distressing for an
elderly person than to be unable to communicate with the person
who is attempting to care for them. I can understand that not
having English as a first language might not always be a difficulty—
for example, it would be ideal to have Gaelic speakers with someone
from the West Highlands whose first language is Gaelic, or to
have Punjabi speakers, as appropriate. But it seems to be adding
distress to distress if the elderly person's first language is
English but the people who are involved with them cannot speak
English, or cannot speak it adequately. Why is that allowed to
happen?
David Behan: I completely
agree with you. The Report, the Department and the Regulator have
been very clear that it is not acceptable. If someone cannot communicate
in the person's first language, they will not be able to help.
| 
