Examination of witnesses (Questions 1
- 19)
MONDAY 27 APRIL 1998
MR JIM
JACKSON, DR
SHEILA SIMPSON,
MS PATRICIA
MCLAUGHLIN,
DR BILL
MCKINLAY,
DR DOUGLAS
GENTLEMAN, MS
CATHERINE SYMINGTON
and MR PETER
DAVIES
Chairman
1. Good morning, ladies and gentleman. May
I welcome you to this session of the Committee. Before I ask you
to introduce yourselves for the purpose of the record, could I
perhaps explain what we are about. Eric Clarke, the MP for Midlothian
and one of the local Members, suggested to the Committee some
time ago that it would be a good idea if we were to have a look
at the particular problems that your organisations are confronted
with, in particular the lack of appropriate facilities for treating
young people, the question whether available funds could perhaps
be better used, the geographical problems and all sorts of other
issues which are involved. The Committee agreed with Eric that
it would be a very worthwhile session and so we will publish the
evidence that you give us today in response to our questions.
I would hope that we will be able to finish at about 12.15 or
thereabouts and if there are any points that we do not cover,
you will have an opportunity to sum up at the finish. Could I
therefore begin by asking you if you would introduce yourselves
to the Committee, please?
(Dr Simpson) I am Dr Sheila Simpson. I am a clinical
geneticist from Aberdeen Royal Hospitals NHS Trust and I also
chair the Professional Advisory Committee for the Scottish Huntington's
Association.
(Ms McLaughlin) I am Patricia McLaughlin, National
Manager of the Scottish Huntington's Association.
(Mr Jackson) Jim Jackson, Executive Director of
Alzheimer Scotland, Action on Dementia.
(Dr McKinlay) Dr Bill McKinlay. I am a clinical
psychologist and I run a Case Management Service, a consultancy
company. I am also with the Scotcare National Brain Injury Rehab
Unit and I am one of the editors of the journal Brain Injury,
which is a medical scientific journal in the field.
(Ms Symington) I am Catherine Symington. I am
the Director of Services for the Head Injuries Trust for Scotland
and am at the moment Vice Convenor for the Scottish Head Injury
Forum.
(Mr Davies) My name is Peter Davies. I am the
Development Director with Rehab Scotland, which provides vocational
and community re-integration services for people with disabilities,
and I am currently Convenor for the Scottish Head Injury Forum.
(Dr Gentleman) I am Douglas Gentleman. I am the
Consultant in charge of the Centre for Brain Injury Rehabilitation
in Dundee and Honorary Consultant Neurosurgeon.
2. Thank you. Before we begin with questions,
are there any brief opening submissions or statements which any
or all of you would care to make to the Committee? I would not
want you to pre-empt the questions we may have because sometimes
"brief" is interpreted as a 40-minute statement, but
if there are any short opening remarks you would like to make,
then we would be pleased to hear them?
(Ms McLaughlin) These three particular client
groups have come together as we believe that they represent the
largest separate diagnostic groups within the field of brain disease
and those for which there is wide recognition that relevant services
could and should be improved. In this respect, we believe that
these groups have an emblematic standing for many other diagnoses
and improvements for these client groups would have a natural
spin-off effect on the care provided for other brain conditions.
(Dr Simpson) As I said, I am a clinical geneticist
and I specialise in inherited diseases. I just want to say to
the Committee that they may not have heard much about Huntington's
disease before today. This is not because it is an especially
rare disease. There are about three times as many Huntington's
patients as there are affected AIDS sufferers in Scotland but
it may be because of lack of official recognition of Huntington's
disease as a discrete problem with unique needs for care and management.
Those affected, who lose control of their personality, their control
of their bodies and emotions, are cared for in a range of unsuitable
places such as nursing homes for the elderly and psychogeriatric
units, plus carers and those at risk have little or no information
about the disease and available diagnostic tests. They are, however,
aware of discrimination in the workplace and the effect on their
social circumstances. AIDS has a low infectivity but if your parent
has Huntington's disease, whether male or female, then you are
at 50 per cent. risk of inheriting it. There are tests to predict
this and tests for pregnancies but a minority, less than 10 per
cent., take advantage of this. In Grampian Region we have a 25
per cent. or greater uptake of these tests because of my interest,
I believe, but in general there are no resources for teaching,
prevention or caring of this disease and no opportunity for sharing
knowledge and expertise such as my own. More than £1 million
per person is spent in some areas on each affected AIDS individual
with great effect. HD requires designated resources to provide
care for this patient group.
(Mr Jackson) If I may say a little, Chairman,
on behalf of younger people with dementia, there are really four
messages we want to give to you today. The first is that we are
looking for recognition that the needs of younger people with
dementia are often different from the needs of older people with
dementia. There has been quite a lot of publicity about Alzheimer's
disease but we particularly want to distinguish the needs of younger
people. The second is that the initial key to everything is better
and early diagnosis. Then this, thirdly, needs to be followed
by referrals to agencies that can provide information, support
and advice. Current services, current limited services, are very
disjointed. You may get a diagnosis, it may be late, but passing
on to other agencies may not occur at all. Then finally, we are
looking for support services in the community that do not lump
younger people with dementia with older people, and this includes
day care, home support, respite care, residential and nursing
home care. Taken together, those four points are the crux of our
arguments as to how services for younger people with dementia
might be improved.
(Mr Davies) Mr Chairman, first of all, we are
very happy to have this opportunity to meet you. You have the
submission and I just wanted to touch on one or two points to
emphasise them. First of all, it is important to understand that
traumatic brain injury is something that affects principally young
men. About 75 per cent. of those affected will be young men in
their late teens or early twenties and after injury they will
have a normal life expectancy, so the problems that arise are
very long-term problems; they are not ones that are amenable to
short, sharp solutions. Secondly, a minority of these people require
surgical input, so while only about 10 per cent. will go to a
neurosurgery unit, not even that number will actually get an operation.
There is a very large number of people who do not receive those
services and who tend to get lost in the system. We are rather
worried, therefore, that there seems to be an absence of good
pick-up and identification particularly coming from district general
hospital level and that there needs to be a continuum of funding
and resources which can identify people early and provide a continuum
of services through. We are concerned about the current debate
about re-organisation of the health services. To have a debate
is fine but you may simply end up moving the gaps in the net;
rather than closing the gaps in the net they just move them around.
We believe also, in the context of that re-organisation, that
there is a major need for education of primary care providers
on the scale and nature of the problems and the availability even
of the current resources. The second point that we wish to make
is that there is an absence of specialist services for children
in Scotland and that is something that requires urgent attention.
Thirdly, there is a need for specialist resources to be available
where the people are at a local level, not simply concentrated
geographically, and the ability of the current service provision
to spread out the services is very limited, or appears to be.
The fourth and final point is that we were very happy last year
when the new Minister, Mr Galbraith, agreed to acknowledge brain
injury as a specific disability group for community care planning.
This was very welcome. What we now need is a strategy to make
something of that because at the moment it appears that those
responsible for the planning and commissioning of services are
not too clear about the scale and the nature of the problem.
3. Thank you. I am sure the Minister, as
a former brain surgeon, is only too well aware of the problems,
but we will ensure that he gets a copy of the transcript of this
morning's proceedings. Does anyone else wish to say anything at
this stage? If not, may I thank you for setting the scene for
our proceedings this morning. There are, of course, other organisations
and other illnesses that are perhaps in a similar situation to
yourselves, and it may be that some of our Members will ask you
at some point about those and you may be able to give us some
information about them, but I think what you have just said sets
up the first question very nicely because none of you has referred
to the numbers of people that we are talking about. So could you
tell us in relation to your own organisations how many people
are actually affected by the conditions that you represent, either
directly or indirectly, for example, of course, family members?
Do you know in general terms how many people are affected?
(Dr Simpson) With Huntington's disease there are
usually about 600 affected by the clinical features of the disease
but about five to eight times that number, perhaps about 4,000,
at risk with significant morbidity attached to that.
4. These are Scottish figures?
(Dr Simpson) Scottish only, and then double that,
about 8,000 of their carers and partners, who have also significant
problems associated with being an HD family member.
(Mr Jackson) For dementia there are 2,500 younger
people with dementia, and that is defined as under 60, out of
the 60-61,000 people in Scotland who have dementia, and roughly
equivalent numbers of family carers.
(Mr Davies) As far as traumatic brain injury is
concerned, according to Scottish Office figures from hospital
discharge data, the figures we have are for 1995 which showed
just under 13,500 patients aged 14 and over and 5,200 children,
that is 0 to 13, and that is the annual figure, so you should
expect that every year. In terms of family members, all of them.
You can multiply it by all the family members.
5. Are most of those as a result of road
accidents?
(Mr Davies) Probably the majority, yes, but in
urban areas you also get quite a high proportion of assaults and
there is a high level of alcohol involved in such injuries.
(Dr Gentleman) And also many falls. It depends
what kind of head injuries we are looking at. In the most severe
category, yes, you are quite right, 60 per cent. approximately
are the result of road accidents, but if you look at the group
of head injuries as a whole who require rehabilitation or who
end up disabled, then falls become quite important and so do assaults.
Mr Clarke
6. May I assume that mainly the Huntington's
argument or discussion is the fact that you are talking about
statistics but this is the sort of disease where nobody tells
each other or the next-door neighbour, "My father suffers
from this disease." It is a taboo and it is difficult to
assess in a survey. I believe you have done a survey in Grampian
in depth but that has not been done in the rest of Scotland, has
it?
(Dr Simpson) Yes, that is correct.
7. And that is what is needed to be done?
(Dr Simpson) Yes. The Grampian population are
reasonably well documented but there are still pockets where they
do not present themselves to the medical services because, historically,
affected individuals are taken off and literally locked up in
psychiatric units, so they have a fear of the medical services.
But in Grampian Region we are fairly well documented and recognise
that there is a significant morbidity attached within the families
by being a member of a Huntington's family, of others being affected
by it.
8. Is it your estimate that in Scotland
there are a lot more people suffering from this?
(Dr Simpson) Yes. The figures available from the
Registrar General of those affected are less than half of those
who are actually affected by the disease, judging by my own experience
in Grampian where, when they are sought out, the true figures
emerge.
(Ms McLaughlin) Could I add a brief comment to
that. As an Association we have provided an advisory service,
funding available to act as a specialist adviser in a regional
area. On three separate occasions—in Lothian, Fife and Glasgow—we
were given an estimated number of those with HD. Each time we
had an adviser in post the number of referrals doubled the original
number estimated. We think that is a very strong indication of
need—that when the service was on the ground—many
more people came forward than was previously anticipated.
9. Is it the case that you are worried that
the diagnosis, or the ignorance attached to it in the medical
profession, of these particular diseases is not prevalent? For
instance, I have heard that some new people who are studying medicine
have not ever seen or diagnosed it. They may have mentioned it
but they have no idea what these people in their early symptoms
or other symptoms have. In other words, there is a lack of input
into the knowledge that is being portrayed to students in the
medical profession of this particular disease? Is that correct?
(Dr Simpson) Yes, it is correct. There is a vast
lack of knowledge about the clinical features of the disease,
which are only just coming to light as genetics has uncovered
the genetic basis of the disease and more families are coming
forward. So clinicians have a lack of experience in diagnosis
and management of the disorder. That is slowly improving but the
resources are not available to enable this to happen quickly.
Miss Begg
10. I am wondering if those from the Scottish
Head Injury Forum can estimate how many? The figures you have
just quoted will include everybody from the very mild to the very
severe. Can you estimate what proportion of those figures will
be classed as so severe that they can no longer be looked after
in a conventional family setting, that they need the level of
care that I think we are looking at today, which requires specialist
help beyond the normal specialist help, that living in a conventional
family would be beyond what they are capable of or what their
family would be able to cope with?
(Dr Gentleman) Maybe I can try to answer that.
I think at one extreme of the spectrum you have people who it
is fairly clear from an early stage will not be able to go back
to a normal family setting, as you put it. There is a much larger
group of people, though, who have the potential to go back and
lead very fulfilling and independent lives in the community if
they are helped to do so. If they are not helped, they will not,
and historically if we look at what happened to many of these
people, they were put into institutions of one sort or another
and tucked away out of sight, which probably reflected society's
attitudes as much as anything else. But times have changed greatly
and, quite rightly, people want more than just the acute care
after they have had a road accident or a fall, and there is plenty
of evidence now, particularly from North America, that specialists
who work in the field of brain injury are able to achieve outcomes
which otherwise might not be achieved. For example, in the unit
which I run there are 30 experts of one sort or another and only
two of us are doctors. There are about 15 nurses, there are therapists
of various sorts, dieticians, social workers, rehabilitation assistants
and so on, and also within the rehabilitation team (if I can put
it that way) are the patient and the patient's family and we try
and work as a group looking in a very holistic way at what the
problems are after the road accident. It might be that the problems
are very obvious to everyone, for example the inability to walk
due to paralysis of the limbs. That is actually relatively unusual
after a severe head injury. It is much more common to have hidden
disorders, as it were, disorders of thought processes, of communication,
of information-processing in the brain, of emotional control,
of decision-making, which may be quite invisible to a casual observer,
perhaps even invisible or confusing to members of the family,
but which can actually wreck that person's life unless they are
helped to adjust to that. In a sense the challenge for those of
us in this field is to do as much as we can for as long as we
can for the large number of people who have that kind of problem.
As in any spectrum, there are not any clear-cut goalposts, if
you like. You go from people who are very severely damaged indeed
to people who, as you quite rightly said, have very mild head
injuries and, as it were, have escaped and are indistinguishable
after the injury from what they were before, but in the middle
you have quite a large group of people and it depends what question
you are asking really as to how many there are. If you are asking
how many people need the kind of expert rehabilitation programme
which has a medical or clinical orientation initially, you are
talking of a ball-park figure of 1,000 people a year in Scotland.
If you are talking about the people who do not require much in
the way of medical help but who require help to get back into
life, their relationships, their job and so on, it is rather more
than that; perhaps 2,000 would be a reasonable estimate. Peter
might have further views on that because that is very much his
field. The point, though, is that it is a very much larger figure
than all the conventional studies have suggested because they
have largely been derived from populations looking at the severe
end of the problem—and I say this as someone whose background
is neurosurgical. If you look at the patients who come to the
Neurosurgical Unit you only see one part of the problem and under
the water, as it were, there is a large iceberg of very large
problems and there is now good evidence that people who come nowhere
near needing a neurosurgeon's help nevertheless can be quite badly
damaged as a result of the injury but have the potential to make
a good outcome if they get help.
(Mr Davies) Chairman, if you like to look at Appendix
10 of the submission we made, there is a very recent report for
the Chief Scientist's Office by Professor Teasdale and others,
which is a follow-up study of 3,005 people admitted to general
hospitals in Glasgow with head injuries, not to the specialist
neurosurgical unit but to general hospitals, a one-year follow-up,
and at one year he is talking about 1,400 adults who are still
moderately to severely disabled and even if all patients who are
not traced have made a good recovery, the estimate indicates a
minimum of 940. So out of 3,000 that is the sort of scale of the
problem.
Mr Clarke
11. We have asked you all to appear together
because the groups whose interests you represent have certain
things in common. In what ways do you differ in terms of care
needs?
(Ms McLaughlin) I think one of the key components
is that there have been no studies in Scotland. There is no specialist
centre at all for people with Huntington's disease. There is an
absolute lack of clinical leadership in Huntington's disease.
Those with HD can be seen by a host of different clinical managers
and in actual fact it very much depends on their luck as to who
they are seen by. The one key element is that there is no centre
of excellence apart from the management clinic that Dr Simpson
operates through her own particular interest. There is no other
place where someone can be seen holistically and where their total
clinical needs can be assessed.
(Dr McKinlay) Could I say that I think there is
a considerable overlap at one end of the head injuries spectrum.
At one end there are those who will require continuing care, either
in some kind of setting away from home or in their own home, and
there is an overlap there with perhaps the later stages of dementia.
The head injury group, of course, does also have an end, quite
a big end, where return to work at some level is, in fact, possible.
Very small percentages achieve that without specialist help but
evidence particularly from North America shows that that can be
achieved with specialist help. The other way in which the groups
overlap is on the question of the services to which they have
access. These groups are all groups in which psychological problems
are common but actual psychiatric diagnoses, such as a major depression,
for example, are relatively uncommon and so they are often squeezed
rather uncomfortably into conventional psychiatric services but,
in fact, their problems do not quite fit.
(Mr Davies) The final and most obvious difference
is that head injury does not degenerate. If you have a head injury,
you get rehabilitation and you get to a point and there you are;
it is not a degenerative condition.
(Dr Simpson) That is obviously a reasonable comment.
Huntington's disease is a degenerative condition but if they have
adequate resource and information the families can be enabled
to have the affected member within their home for much longer
and without expensive crisis intervention and management. The
other major issue, of course, is that Huntington's disease is
an hereditary disorder, so that there is a generation growing
up looking at the affected member, knowing that they too may be
affected as they approach their thirties and early forties and
you must not forget also that this disease strikes people at the
peak of their earning power and the peak of their responsibilities
in their thirties and forties when they already have children
and they have a family who then become dependent on the system.
12. Do you know what percentage of cases
are hereditary?
(Dr Simpson) Huntington's disease is always hereditary.
It is a disorder with a very low mutation rate and if your parent
has the disorder you have a 50 per cent. risk of inheriting it
whether you are male or female.
13. Can it skip a generation?
(Dr Simpson) No, it cannot. If you inherit the
mutation, which we now have been able to document, then you will
develop the disease. There is evidence about the size of that
mutation and the age of onset, but the vast majority are in their
late thirties or early forties when they are diagnosed.
Mr McAllion
14. Chairman, perhaps I could ask a couple
of questions. Dr Gentleman referred to the problem of the people
who have head injuries but who have hidden disorders that are
not visible and they need a lot of help before they can get back
into work. Would the Benefits Integrity Project, which submits
all applications for benefit, cause a problem for this group in
particular?
(Dr Gentleman) I think it would because it is
very easy to miss the problems which these people have unless
you have specialist knowledge in this field. It depends obviously
on the knowledge of the person doing the assessment and it depends
what he or she is looking for, and inevitably also people who
have had a head injury are capable, as it were, of putting up
a smokescreen of cover. They manage to muddle along to an extent
in their life, and without in any way wishing to pull the wool
over the eyes of the person doing the assessment, that can be
what happens, so that important deficits which stop them from
working are quite simply missed. You do actually need a fair bit
of specialist experience in this field to know what it is you
are looking for.
15. So there is a real danger that adjudication
officers or even medical services will not pick up these people
with serious problems and simply deny them benefit and try and
force them into some kind of work should it be available?
(Dr Gentleman) That is exactly right.
16. I think it is important that that should
be put on the record.
(Dr McKinlay) Could I perhaps add on the same
lines this phenomenon, often called lack of insight, is a common
post-head injury problem and they may have a falsely optimistic
view. They may, in fact, tell you in good faith that they plan
to go back to work soon but you know that there is no prospect
of that.
(Ms McLaughlin) Picking up Mr McAllion's point,
in the last two weeks I have actually been bombarded with calls
from our membership and our staff asking for more information
about the Benefits Integrity Project because many of them have,
in actual fact, been approached and are very concerned about the
likelihood of the alteration in their particular benefits, and
these are people who are in the late stages of Huntington's disease.
So there is a definite concern in our client group about this
at the moment.
17. What kind of action should Government
be taking to make sure that people are not missed in this process
and forced off benefit who should not be?
(Mr Davies) The critical one has to be education.
I think it probably cuts across all the groups but the people
doing these adjudications need to understand what it is they are
seeing and need to be able to interpret that in an appropriate
way and not, as Dr McKinlay said, take what they see at face value.
That is why, I suppose, certainly as far as brain injury is concerned,
it is often called the hidden disability, because you have the
walking and talking wounded who look fine, can talk all right
for ten minutes or so and after that things begin to break up.
Miss Begg
18. May I add another point on the nursing
service. Is it not the case that Huntington's is like MS, though,
that they actually need re-assessment regularly because it is
degenerative, and so if the benefits are worked out at one point
in time, six months later they actually need a great deal more,
so it is not a case that they must not be re-assessed? They need
constant re-assessment to make sure that their needs are being
constantly updated and met?
(Ms McLaughlin) Absolutely. I think the points
being made on the calls I had were the suggestions that it was
actually going to be reduced. These were people with a degenerative
condition who were becoming worse. I think this just was due to
the lack of knowledge at the time of the assessment.
Chairman
19. Most of us got inundated with mail from
constituents who were concerned. Certainly in one or two cases
the concerns have been voiced without justification because none
of us knows yet what will happen but we can well understand why
people were alarmed about any possible change to the situation.
(Mr Jackson) May I make a more general point about
benefits, Chairman, that for people with dementia there is no
doubt that a large number of them fail to claim the benefits to
which they are entitled. We have one specialist welfare benefits
project for people with dementia in Glasgow which is entirely
funded by charitable funds because we can find no statutory funding,
yet we understand that the Chancellor of the Exchequer is keen
for older people to receive the benefits to which they are entitled.
So my answer would be that one of the ways of encouraging benefit
take-up is to have a series of specialist projects for people
with these illnesses, because the lack of self-awareness that
Dr McKinlay referred to means that people with dementia, and I
suspect with other conditions, will not actually go and apply
for the assistance they need, and what you might call the more
general welfare benefits advice that is available through local
authorities, citizens advice bureaux, does not actually reach
this group of people.
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