Examination of Witnesses (Questions 320
- 340)
TUESDAY 25 JANUARY 2005
PROFESSOR CAROL
BRAYNE, PROFESSOR
CLIVE BALLARD
AND MRS
LINDA KELLY
Q320 Baroness Walmsley:
Yes.
Professor Brayne:
I am not aware of any reports other than the general scientific
reports about the migration because we have a lot of able folk
coming in as well as we are recruiting scientists at PhD level
and so on. What I have seen since the demise of the regional research
and development is the lack of the NHS R&D work at the regional
level, so you could bring junior scientists on, both medical and
non-medical, in the local area and make them ready to compete
in the national setting and put them through the system that way.
That worked extremely well in the regions. It is the same argument
we have had recently about the stellar research departments, that
you cannot have a five star department unless you also have three
and four star ones, you have to have the different football teams
in order to generate the very top level. We saw that in action
with our regional funding because then you could take the best
of that bunch and put them forward for the MRC funding or the
highly competitive funding. Could I just comment on the policy
issue? Although I said that many of the councils are saying the
right things and putting out bids in the right areas, that is
always responsive mode, so they put out a call and then there
are tenders and then the quality of the work and the area of the
work is totally dependent on the community that already exists,
but it does not fill in the gaps. It may continue excellence in
certain areas and make that better. If we want to spread out across
the areas we will have to have another approach, not this constant
tendering because we have it from the NHS, we have it from all
the councils and we have it to some extent from the charities
as well. I think the scientific community is constantly in a position
of having to bid again and again and again often for the same
thing which you know would be valuable if it was done. It is a
waste of scientific time to keep bidding. It will be done in the
end because somebody will fund it.
Mrs Kelly: I would
agree with Carol. I think that you have to have proactive as well
as reactive calls for applications. I think the link from policy
to research is actually quite weak at the moment from our perspective.
There have been some quite nice examples in the last two or three
years where they have got a group of scientists together and asked
what they think are the key scientific questions and then they
have looked at funding some of that work. If you do it this way
you get better quality research.
Q321 Baroness Walmsley:
When you say they have got groups of scientists together, who
do you mean?
Mrs Kelly: We have
done some of that. An example was with stem cell work, which is
not quite ageing but perhaps relevant. Something like 4,000 articles
were published in 2002 on what we could do. We put together a
facilitator network and got everybody that we knew interested
in the area to go and attend a conference and we asked them what
they would like to do and then we tried to support the best idea
there. The reasoning behind it is that you get people swapping
ideas and you also get rid of things that are not viable, particularly
in quickly emerging areas. We then got involved with the MRC and
we asked the MRC if they would be interested in helping us do
a conference and they did a stem cell conference. That does not
negate the reactive applications at all, it has added to it and
we do it in a rather modest way, but I think there is room for
other groups to do that. It is very beneficial particularly in
emerging areas where there is not that many scientists but people
have come from a different angle.
Lord Soulsby of Swaffham Prior:
When we were in Washington we saw some very active young groups.
There was one group that our adviser knows very well and it is
an Englishman who is in charge of it. He comes over here and he
knows where to go to convince the people to go and tells a sad
story of low salaries here, the difficulty with housing and so
on and so forth. So the best people are going there. They are
full of excitement as to what they are doing. How many will come
back? I do not know. It is stimulating to see them and sad to
know that it is taking place. I think there are some centres in
this country where there is an exchange scheme and Cambridge is
one of them.
Q322 Chairman:
Happily, one of the young researchers I spoke to was coming to
the Sanger Institute next month with similar excitement, wanting
to see what is happening in this country.
Professor Brayne:
Maybe one of the constructive things is greater encouragement
of this exchange, like the MIT programme that we have from Cambridge
which does encourage that. We have had people coming through our
Masters programmes who do a couple of years with us and a couple
of years in the States, so they are very familiar with both environments
and then they can work quite easily across the Atlantic. It is
very stimulating for all of us to have that kind of exchange.
Professor Ballard:
Obviously one of the ways of trying to nurture promising younger
scientists is through research fellowships and certainly the Alzheimer's
Society supports those fellowships, as I am sure the Parkinson's
Disease Society does and the research councils, but there are
relatively few of them and particularly few in the area of neurodegeneration
and so they become extremely competitive. Although it means that
the people who are successful are usually extremely good quality,
they are very limited in number and in terms of developing capacity
that is probably not quite sufficient. Some of the initiatives,
such as the ones that Carol mentioned at a regional level, used
to be very helpful in supporting that kind of development, and
that does not really exist any more.
Q323 Chairman:
Why does it not exist now?
Professor Ballard:
I am not sure. Carol might know the policy better than I do. I
think what has happened more and more is a lot of funding has
been given in slightly different ways, either to indirectly support
trusts who are supporting research in other ways or as part of
specific commissioning calls and I think those can be valuable
in their own way, but there is a loss as part of that as well.
Q324 Chairman:
And this is NHS money for research?
Professor Ballard:
Yes.
Mrs Kelly: I think
the reason is that people development per se is a judgement
and people are trying to focus on that.
Chairman: We might
have some witnesses from the NHS before us before too long.
Q325 Baroness Walmsley:
Neurodegenerative diseases are clearly seen as priorities by the
NHS and, of course, the pharmaceutical industries. Do you think
there is sufficient co-ordination of effort between the two? Is
the focus more on the treatment of problems as they arise or is
the emphasis on prevention? Is the focus more on the one than
the other or is the balance about right?
Mrs Kelly: I would
slightly challenge the statement that they are seen as priorities
by the NHS. I think if we really want to tackle it you have to
take the person as a whole person. I think the silos of psychiatry
and neurology are a very good example. In Parkinson's you can
go to a neurologist, but if you had dementia you are meant to
go to a psychiatrist and that seems to me not quite right. I would
challenge whether they are a priority. I think the treatment of
elements of neurodegenerative diseases are priorities but I think
we need a whole person approach to it. I think the pharmaceutical
industry has a wider remit and clearly might be able to comment
even better than I can. They do early drug discovery and put products
onto the market and I think that is really where they are. I am
not sure the NHS and the pharmaceutical industry overlap that
much in our area of expertise. With regard to prevention or treatment,
if people could get the prevention of Parkinson's disease they
would. I think if one could produce a vaccine that would be developed.
Q326 Chairman:
Where is the funding going then?
Mrs Kelly: In the
NHS?
Q327 Chairman:
And the pharmaceutical companies. Is it really on treatments or
on prevention?
Mrs Kelly: The biggest
study we have done into Parkinson's disease is actually in surgery.
Rather than leave it to the end stage, are you better to get it
really early on and give people a better quality of life? It is
a study costing about £10 million. It would be a very good
use of money. In the pharmaceutical industry it tends to be cell
death and ageing and general types of research like that and rarely
in surgery, more in medication and different types of medication
or existing medication and different uses.
Professor Ballard:
I think the pharmaceutical industry has a very specific remit,
which is to develop products that have a marketable value and
they can be successful in developing several treatments which
have moderate but important clinical benefits in terms of symptoms
for people with predominantly Alzheimer's disease that the same
treatment might help. I think that has been important but there
are huge, huge gaps. For example, earlier I mentioned vascular
dementia. You would expect, because of the studies into strokes,
that things like aspirin, treatment with hypertension drugs, would
be effective, but those studies do not exist because there is
not an economic priority to drive those studies forward and nobody
is funding them either. So there is a huge gap in the market.
All the companies have been very helpful in developing symptomatic
treatments, but they have left big gaps and it needs a better
strategy if you are going to cover the breadth of people. Most
of the effort is currently going in to developing drugs which
might modify the disease caused and therefore there are several
studies in progress at the moment that are looking at treatment
approaches. There are a number of methodological issues around
how you measure that in a clinical trial that are also being wrestled
with in parallel. I think the prevention studies have not really
had the same emphasis. There are epidemiological studies and case
control studies that have compared people who have developed dementia
and who have not and who have looked at lifestyle facts and things,
but the level of evidence is fairly weak from a lot of those studies
because there are so many complex factors to consider that can
bias the apparent findings. Carol knows this area an awful lot
better than I do. There are only a handful of actual properly
controlled trials that are investigating those kinds of issues,
and really there is a much bigger need to invest in those kind
of prevention trials, but they are long-term trials that are expensive
to fund and certainly from a pharmaceutical company point of view
they wouldn't be a worthwhile economic investment. So it has to
be part of an overall strategy of developing treatments.
Professor Brayne:
The pharmaceutical companies by definition can only address real
tertiary and secondary prevention, tertiary being when the disease
is manifest and secondary being more related to screening. I think
the pharmaceutical companies are paying a great deal of attention
to the area which might be secondary prevention and they have
given a lot of attention to this category which you may have heard
called mild cognitive impairment. In the category mild cognitive
impairment people have been shown to be at greater risk of developing
dementia on follow up. However, for an individual it is not a
terribly good predictor because, depending on the setting, between
a third and a half might go on to develop dementia. However, if
you put that against, say, hypertension, we do the same thing,
we treat people who would not have gone on to have a stroke, but
we treat the hypertension in order to treat the stroke. You need
a very substantial amount of evidence to justify treating large
sections of the population for a possible risk of conversion to
dementia over time. Judging by the conferences, the pharmaceutical
companies are really focusing in on this early stage dementia.
The implications of that, where they have trial results, suggest
that if they reduce that conversion to dementia even by a small
percentage it would be really very substantial, because it would
suggest that you could go out at the primary care level and identify
individuals who might be at greater risk and start treatment,
in which case you have a very large population to treat. I think
we need to be very aware from the public health point of view
that that is a very substantial cost on the horizon if there are
positive trial results coming out. There are all sorts of issues
to do with screening tests. I think the pharmaceutical industry
is very focused on treatment, but they are pulling it into the
normal range very much at the moment from my perspective and from
our population distributions. If that were applied to the population
then a huge section over the age of 80 and 85 plus would be eligible
to receive such medication. On primary prevention, cigarette smoking
is a good example of one which is probably a risk, it is almost
certainly a risk factor for dementia and so the things that are
going on at the moment in order to reduce exposure to cigarettes
are likely to have a beneficial effect later on. Alcohol probably
has an inverse relationship with a split projection and then a
risk with it. There are things happening in the population which
might tell us about prevention and the impact on the population
later and this is perhaps where the White Paper on public health
comes in. The area of public health and neurodegenerative disease
could be economised by all the clinical research networks that
Clive has mentioned because they are a little bit silo based,
they come out through the cancers, diabetes and so on, but public
health has common factors which run right across. Ageing fits
in with that agenda really, ie what is the appropriate action
that we should take in terms of research and care across these
wide areas, because individuals will have diabetes and dementia
and possibly cancer and so on, but the clinical research networks
are in silos. So I think there is quite a concern there. The evidence
on real prevention of dementia from trials has been quite disappointing.
The HRT trial for dementia was stopped because it appeared that
the people on HRT had a greater risk of cognitive impairment and
there was a lot of debate as to why that might be. The trials
for primary prevention of dementia have not really thrown up anything
very positive. There is some promising work on physical exercise
and cognition, but these are studies which are extremely difficult
to do and they really do need stable support to be able to do
them. I would hope that that is the sort of thing where, because
physical activity is coming out as a general exponent for good
health, we should be able to make that agenda up through the public
health initiatives. I do not know exactly what is happening there,
but I understand there is going to be a co-ordination of public
health research to try to make it more strategic. You may know
more than I do on that.
Chairman: I suspect
not.
Q328 Baroness Hilton of Eggardon:
Do you have a social class correlation in relation to dementia
and lifestyle from the point of view of better nourishment, perhaps
more exercise?
Professor Brayne:
It is very difficult to disentangle different effects. There does
appear to be an education effect. There is a difficult issue there
in relation to education or lifestyle and span of life. You might
have a lower risk at a particular age, but whether or not you
will die with dementia may be different because you live longer.
There are two issues there.
Baroness Hilton of Eggardon:
It catches us in the end!
Q329 Baroness Walmsley:
We sometimes come up with bonus effects of things. You mentioned,
for example, stopping smoking reduces pulmonary disease, but it
has an effect in terms of dementia. There is quite a widespread
prescribing of statins at the moment to keep cholesterol down,
presumably to avoid vascular disease mainly. I heard that high
cholesterol presupposes people to Alzheimer's as well. Could that
be an unexpected benefit, this widespread prescribing of statins?
Professor Ballard:
It could be, but it needs to be evaluated much more carefully.
I have seen about five epidemiological studies looking at statins.
You might have seen more. Most of them seem to indicate some potential
reduction of risk. However, I always get worried when the results
are not consistent. If you look at the different studies, some
of them suggest it is all people with dementia; some suggest it
is people with just certain types of dementia; some suggest it
is only certain statins or that it is all statins or all lipid
lowering agents. When you have that degree of inconsistency, it
makes you a little worried about what the studies are really showing.
There are two studies published that were placebo control trials
which appeared to show no reduction of risk, although those trials
were not predominantly looking at cognitive outcomes and they
were in younger people so the statistical power of the studies
was limited. Nonetheless, they do not provide much support for
the hypothesis. What is required is a proper study in a higher
risk group of individuals with proper end points that are cognitive.
Going back to what Carol said about the HRT story, one of the
possible explanations for the HRT and the statins might be that
people who are of higher levels of education will generally look
after themselves better, have a better diet; they will be more
likely to go to their GP. If they are more likely to go to their
GP for statins, they are probably also more likely to go to their
GP for treatment of blood pressure, so there could be quite a
lot of non-specific factors which are leading to an apparent reduction
of risk in those individuals, which is why I think it needs to
be examined carefully.
Q330 Lord Soulsby of Swaffham Prior:
I have three questions which are all part of one another. The
first one is crystal ball gazing. What do you perceive the opportunities
are for research neurodegenerative diseases over the next five
to 10 years in the short term and, in the longer term, over 10
to 25 years? What are the hopes and expectations?
Professor Ballard:
The Alzheimer's Society is similar to the Parkinson's Disease
Society. We look at research in care, cure and cause. I do not
want to neglect the care area because there is enormously important
work that has been done and needs to be done. One of the priorities
for me and for members of the Alzheimer's Society is to implement
what we know about how to provide good quality care into practice.
What happens at the moment is that isolated research studies show
that if you provide care in a particular way it can dramatically
improve people's quality of life or reduce the need for sedative
drugs and other things. Yet, when you look around the country,
that practice is almost never implemented. In terms of care there
are some huge issues. In terms of more biological type work, in
the last few years we have developed so much better understanding
of the molecular biology of Alzheimer's disease and other dementias
that it has created tremendous new opportunities. There are now
a whole number of different strategies for trying to reduce the
accumulation of amyloid protein in the brain, which is in the
plaques in Alzheimer's disease. One of those is the Alzheimer
vaccine which has been in the press quite a lot. There are a number
of other approaches to tackling the same thing. There are also
a number of approaches being developed to try and stop the development
of tangles in nerve cells in Alzheimer's disease and again there
are some agents in clinical trials at the moment. We heard mention
of stem cells earlier. To me, one of the really exciting things
in the last year or so is the fact that we all have these stem
cells in our own adult brains and there is some evidence that
they increase in response to stroke and to Alzheimer's disease.
If we understood that process better, there might be possible
opportunities to increase brain self-repair, for example. This
is a personal view but in terms of the biological developments
I would see the anti-amyloid approaches, particularly the vaccine
and some of the approaches based on enhancing self-repair through
stem cells as probably the most exciting things that are likely
to lead to more substantive treatments in 10 years.
Mrs Kelly: Genetics
and genetic mutations translating into clinical benefits. Use
of stem cells or not is very exciting. Environment factors and
their role, even things like pesticides etc. Pragmatism. We have
talked a lot about having exercise, stopping smoking and that
sort of thing. I do not think you have to wait for research to
try and get people doing that. I would like to reinforce Clive's
point. There is some very good treatment around, and if 100 per
cent got the very good treatment it would move up the quality
of care quite significantly. That is not to negate the fact that
there have been breakthroughs, but there is some stuff out there
which, if we implemented it better, could help a lot of people.
The other thing is gene therapy and translating that into clinical
benefit. That would be our list.
Professor Brayne:
With the public health hat on and the epidemiology hat on, the
exciting thing for us and the reason why I went into epidemiology
was the ability to take the new biological findings and see what
impact and meaning they had in the population setting, to take
the likelies, the most exciting things and to test out the other
areas of possible causation like pesticide exposure. Because of
that background, I also have the caution which is that findings
are likely to be less exciting. You put them in a setting and
a context so it seems less exciting because you are immediately
saying, "Yes, stem cells are exciting technology." When
you think about it in relation to people with dementia who are
aged 85-94, it may not be appropriate. We have to have a balance.
Again, it comes back to the public health type of research, taking
the novel science and trying to make it meaningful for populations
and having a research base ready and waiting to translate that
work. We have not had that research base ready and waiting to
test things out and to translate the findings. I think it is possible
to create that base possibly through the clinical research networks,
by having proper, decent registers of patients, good information
technology to be able to model what is going to happen in the
populations in the immediate and the long term future, so that
we can much more quickly move from good findings to meaning at
the population level. At the moment it takes us many years. I
do not think that is necessary. Epidemiology is an exciting population
research to be able to translate those findings into meaningful
results quickly.
Q331 Lord Soulsby of Swaffham Prior:
At the molecular biological level, what are the animal models
you can use for these various conditions?
Professor Ballard:
There have been tremendous developments in that. Probably the
most useful model that has been used to develop most of the drugs
that are currently in clinical trials has been a so-called transgenic
mouse model. These are various strains of mice that carry the
genes that cause early onset familial Alzheimer's disease. As
these mice get to about 12 or 18 months of age or even older if
they can survive longer, they will start developing some of the
pathologies. They are not perfect models of Alzheimer's disease
because most of these mice will develop amyloid pathology which
is the protein that develops in the plaques. They will not develop
some of the other changes that happen in Alzheimer's disease.
People are working on refining the models and trying to cross-breed
different models but nevertheless, particularly as a lot of the
drugs in current development are trying to target this particular
protein amyloid, this does appear to be a very useful model for
investigating those drugs. People have started in the last few
years using fruit flies much more widely as well. For example,
there was a very exciting study that came out last year looking
at treatments to try and stop the development of tangles in nerve
cells in fruit flies. Obviously, given the life length of fruit
flies, it is much easier to do these studies over a quicker time
period. I do not think that negates the need to then look at them
in mammal models but it might give you an initial way of looking
at it in a relatively cost-effective way before taking it on to
the next stage of development.
Q332 Lord Soulsby of Swaffham Prior:
With respect to animal models, are there any naturally occurring
animal models in the restricted genetic populations of dogs and
cats and wild animals?
Mrs Kelly: Not in
Parkinson's disease. It does not occur except in humans. You are
initiating it with chemicals which is why it is a limited model.
Professor Ballard:
I think the transgenic models are the best models at the moment.
There are certainly some strains of mice that, as they get older,
seem to lose nerve cells in certain parts of the brain that we
can investigate, but they are probably not quite such good models
for Alzheimer's disease as the transgenic models.
Q333 Lord Soulsby of Swaffham Prior:
You mentioned the complementary activity and social gerontology.
How can one interact in a complementary way with the other sciences
connected with ageing like gerontology for a better understanding
of some of the dementias?
Professor Ballard:
It tends to take strategic development. We mentioned developing
partnerships. On an ad hoc basis, the Alzheimer's Society
has tried to do that as well. As scientists, I think we all try
and develop partnerships but it is very much about people you
have met, what you see and information you have seen. It just
requires a much more cohesive approach to try to put together
people with different major areas of expertise in order to set
up a proper strategic agenda. It is mainly about communication
between different people with different expertise before you can
really see how you can best put those expertises together.
Mrs Kelly: We have
found it very difficult to do. Our only solution has been to get
people together because it is so cross-disciplinary. You are trying
to get people to look at a theme. Unless you physically get them
in a room and say, "This is the subject for the day"
we find we fail quite badly.
Professor Brayne:
There are two models which can work. One is the complex intervention
model. Essentially, it is project or theme based. In our own academic
department, the diabetes model has worked extremely well with
physical activity in high risk individuals to prevent the onset
of diabetes. In that team developing those complex interventions,
which is MRC funded, they have social scientists of varying backgrounds
including psychometricians, psychologists and more sociologically
orientated folk to bring in that whole set of disciplines; and
the epidemiologists and the triallists and the primary care physicians
and academics. That has taken about five years to gestate and
get to its current very strong format. The other model which can
work well is something like the CFAS study. It is totally dependent
on secure, stable funding over a period of time. It is a sufficiently
large study that we have been able to develop themes within the
work. It straddles across from the molecular end, the work done
on blood or brains or whatever, right through to the policy end
and legal aspects of brain donation, for example, sociological
aspects of brain donation. We have been able to support a very
wide range of studies because of the core theme of an ageing population
in the research which has its own core focus. We can add on lots
of different things as well and that has been very successful
so we are bringing people together but it is around a study to
collaborate.
Baroness Walmsley:
I wondered what was the potential for the big NHS online medical
records project for your sort of population studies?
Q334 Chairman:
Assuming for the sake of argument that it works.
Professor Brayne:
It is enormous. If the data is collected accurately by the professional
carers, specialists and practitioners at the ground level and
entered correctly, it has the potential to transform the work
that we do because we would spend so much less time trying to
create the populations. In one study I did recently, it was very,
very hard to recruit cases and controls of Alzheimer's disease
because of the data protection laws and the whole mass of legislation.
Working straight through the NHS to case registers where people
have already been asked whether they are opting in, in a generic
sort of way, to being approached about research would make a huge
difference.
Q335 Baroness Walmsley:
How long do you think it will be before that happens?
Professor Brayne:
I do not know. It has been in the offing. People have been trying
with IT in the NHS for some time. The technology is a lot better
now but I should think, at the earliest, it must be about 10 years.
Chairman: If you
have any supplementary evidence or points to make on that, we
would be very interested to receive them after the session.
Q336 Lord Soulsby of Swaffham Prior:
Do you think the research councils and other research funding
organisations give appropriate recognition to the importance of
ageing in general and to neurodegenerative diseases in particular?
If not, what actions do you think should be taken or could be
recommended?
Mrs Kelly: No, I
do not. One of the reasons is it is such a vast area. Perhaps
it would be quite helpful to pick up on some key questions and
try and move some key questions forward. Then, when we have success
with that, get some more key questions. The benefits of that would
be three fold. One, people could see something happening. Two,
it gets exciting because you get expertise in the area. You do
get people with a buzz. You get people wanting to move it forward.
Also, you can get lots of stakeholders involved in that which
I think again is very positive. One of the challenges of neurodegenerative
disease in ageing is because it is so vast and it affects so many
people. It is almost overwhelming. If you could narrow it down,
it would help.
Q337 Lord Soulsby of Swaffham Prior:
One of the things about neurological research seems to me that
it is quite long term and it is not like material where you can
do your experiment in a day and a half. It takes weeks. I am familiar
with the spongiform encephalopathy research and you have to wait
hundreds of days until you know something. That must put a lot
of people off.
Mrs Kelly: I totally
agree. I think it is not right. You could have a balance of some
tangible outputs, even within three to five years. That would
be perfectly reasonable and again would get a sense of energy.
Once you get a sense of energy, it does make things happen. When
you have people saying 10 or 20 years, it is a very long time
away. That is not at all to negate big studies and properly controlled
studies, but we should have specific ones for specific questions
and try and get a little more energy into shorter term output
studies that would benefit people. It would get some enthusiasm
into it and get more people involved. It would attract funding
and quality people. Research does have an element of fashion about
it and therefore if you get things fashionable you attract people
to you.
Professor Ballard:
I agree with all of that. Although you might have some longer
term objectives to develop something which could be a cure or
substantially change pathology, when you are looking at research
studies you obviously have milestones along the way, each of which
will lead to significant output. At the moment, there have been
so many developments in the last few years, it is an incredibly
exciting area. The difficulty is one of capacity. I do not think
there has been sufficient funding allocated to it, but it depends
what people want to achieve. There is a natural tendency for the
number of researchers researching an area to adjust so that it
is equivalent to the funding that is available. What is happening
in the UK more and more is that there is a modest number of very
high quality groups that are researching the area and those groups
will carry on researching the area and producing some high quality
output. If as a country we want to be in a position where we are
making a more substantial difference to research in these areas,
the funding needs to be much broader than that. We should not
just be encouraging a small number of elite groups to continue
to pursue their research. It is really a decision about how much
we feel the UK should be contributing to this area as a whole
and also the priority put on the question. When we were talking
about some of the numbers earlier, 750,000 people with dementia
in the UK, that is an awful lot of people. If you consider that
alongside something like cancer, for example, which is also a
very important question, the magnitude of funding available for
cancer research is many fold above that available for dementia
research.
Q338 Chairman:
Have you any figures that could illustrate that?
Professor Ballard:
Not off the top of my head. I can provide some supplementary evidence.
Chairman: We would
be very interested to see that.
Q339 Baroness Walmsley:
Do you think it is because the people with these diseases are
less vocal than the people with cancer?
Professor Ballard:
I am sure that is true. It is one of the reasons why charities
like the Alzheimer's Society and the Parkinson's Society have
been very important. Certainly for Alzheimer's disease, it was
not really until the late 1970s with the setting up of campaigning
organisations that people had heard of Alzheimer's disease. It
is not a new disease. It has been coming for a long time but nobody
had heard of it until there was an organisation to campaign for
it. Even now, because the people themselves often are not in a
position to be vocal and therefore rely on other people to act
on their behalf, they do not have the same kind of recognition
and representation that other groups of people with serious illnesses
have.
Professor Brayne:
Some people have commented that the age group predominantly affected
has an impact on whether something is discussed at length.
Mrs Kelly: There
is another important thing that we should not forget. Truly, there
has been a huge move forward in understanding of the brain, mapping
of the genome and everything. Particularly over the last five
or 10 years, things about brains have come up. Before, if you
spoke to someone with Parkinson's, the future was very bleak,
whereas now there is potential hope. That allows people to be
more vocal. I think there is an age component but I also think
there is an available opportunity component as well. From my perspective,
it is a really important time to push it. There is opportunity
out there and we might not want all of it in the UK but we should
grasp some of it.
Q340 Chairman:
That is one of the possibilities for this Committee. We can make
recommendations and ensure at least that those who should hear
them do hear them. If you have further thoughts on this, we would
be pleased to hear them.
Professor Brayne:
This comes back to the very first question you asked about: is
it useful to split Alzheimer's, vascular and so on. Clearly, the
labelling of Alzheimer's disease has allowed these charitable
efforts to succeed. It is exponential compared to how it was in
the early 1970s and 1980s. It is enormously successful but it
is still dwarfed by the success of the cancer charities. In the
States, they raise a lot of money. It probably is not equivalent
to cancer but there is a lot more money for Alzheimer's research.
The only problem about it is the need to keep enfranchised those
individuals who receive other types of diagnosis, where people
say, "I am not sure if it is Alzheimer's or something else",
or the vascular dementia groups, who feel sometimes almost excluded
from the debate about Alzheimer's disease.
Professor Ballard:
That is true. The Alzheimer's Society would recognise that as
well. There has been a big campaign about vascular dementia that
has recently started. It becomes a bit of a dilemma because, at
one level, people now know what Alzheimer's disease is, so it
is easy to talk about and people recognise it. I think it does
lead to other people being neglected. If you look in the research
literature, be that basic science or clinical trials, there is
an incredible paucity of work looking at people with vascular
dementia compared with those with Alzheimer's disease. Even within
the Cinderella area of research, there is a Cinderella group within
the Cinderella area.
Chairman: May I thank
the three of you very much indeed for giving us of your time and
expert opinions. Can I re-emphasise my invitation? If there are
any points that occur to you following this discussion where you
could provide more specific information, please let us know. Our
process is that we will begin drafting within a few weeks so,
if there is anything that you want to draw to our attention, the
sooner the better. Once again, thank you very much for a very
helpful session.
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