Examination of witnesses (Questions 20
- 39)
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
Miss Begg
20. I am a patron of the Motor Neurone Disease
Association and their complaint—and I wonder if you share
it—is that because the disease is so rapidly degenerative
there is no way that the benefit system or the actual needs can
be met on a timescale and within the normal set-up. By the time
they assess someone to need a self-propelled wheelchair, they
are already needing an electric wheelchair and so it goes on.
Is that a common problem with diseases such as Huntington's?
(Ms McLaughlin) I would say there is a degree
of that, obviously not the same element as motor neurone, but
I have experience of people who have been in that trap, that by
the time bureaucracy sorts out that one problem, they are indeed
on to the next stage.
21. Have you come up with any kind of solution
to that? The bureaucracy is always going to be behind. Is there
anything that can be done to speed it up or are you, as a charity,
trying to fill that gap?
(Ms McLaughlin) I think we are trying to fill
that gap with absolutely very limited resources. The majority
of what we do is funded through charitable means. We have some
small projects through Mental Illness Specific Grant but, for
example, in the areas where we have managed to get an adviser
in post, they will link in on the Benefits Integrity Project with
those particular clients, but we just do not have the resources
to do that across Scotland.
(Dr Simpson) The voluntary organisation by its
very nature tends to be reactive to crisis situations when people
telephone for help, whereas in an ideal situation if patients
were assessed at regular intervals, then the clinician as part
of a wider team may be able to plan ahead and provide adequate
resources for individuals as well as the patient group.
22. Do clinicians do that? My understanding
is that most clinicians would not see that as part of their role
or their job?
(Dr Simpson) I think there is a wide difference
in clinicians. We are all humans and we all have a variety of
interests, which means that our enthusiasms and energy are spread
thinly, but I think, like my colleague at the end of the table,
there are particular diseases that touch us. Huntington's disease
touched me some 12 years ago, and so I have a special interest
and, therefore, with my patient group I am able to provide a different
sort of service but that is not generally available.
23. So you would see that as a solution
to helping the bureaucracy to get in gear much more quickly to
be able to react? Rather than being proactive, that would be much
more reactive?
(Dr Simpson) Yes, with a baseline of knowledge
about an individual as well as a patient group, one can make suitable
plans and arrangements.
(Dr Gentleman) It provides a model of good practice.
Someone who is an enthusiast for their particular field can show
what can be done with a bit of extra will and perhaps the imaginative
use of existing resources, and then often that is a model of what
can be done to others who maybe had not thought of that.
24. I was wondering whether the fact that
very often we see disability as a medical thing and a clinical
thing can sometimes get in the way of dealing with the social
solution to the problems presented, when from what you are saying
you can say that it is getting the two in harmony, that one can
inform the other?
(Dr Gentleman) Yes.
25. But is it the case that sometimes it
is a barrier, that seeing everything clinically means that they
forget to see the holistic or the full picture?
(Dr Simpson) I would agree. I think what I see
myself as, as a clinician, is a co-ordinator in that I refer to
colleagues for support and help. I can perform neurological examinations
and give therapy as appropriate, but I am also aware of the other
needs of the family and can co-ordinate that service and have
documentation for each patient about the holistic approach to
their care, and I think that is applicable, hopefully, to the
other disorders.
(Mr Davies) I wish to make the comment that I
think this is an important point that follows through into the
way services get delivered into the community. We have experience
in a number of the organisations within the Head Injury Forum,
certainly within my own organisation, that there is this boundary
between what is seen to be medical and what is seen to be social
and the resources follow it. I have had experience of going to
health boards looking for money with all the health gain arguments
and everything else, and people turn round and say, "Where
is the medical benefit?" and we say, "Well, we thought
you were a health board," and the result is that the experience
of recovery from head injury or the experience of the progress
of a degenerative disease is a continuous one and the problem
is that the resources and the services do not match that continuum.
(Dr Gentleman) If I may say a word as someone
who has had a fairly traditional medical upbringing, if you like,
I learnt fairly early on in this field that the way to make progress
is to kick the barriers down, to kick the doors open, and to build
bridges. There are all sorts of barriers, you are quite right,
not only between the medical or clinical and the social side but
also within the medical sphere, and if we look at it only from
our own compartments we get nowhere. If we network effectively
then we do get somewhere.
(Mr Jackson) The same argument applies to dementia,
that after diagnosis frequently people are not referred on to
other agencies, either in the statutory local authority sector
or the voluntary sector. This is absolutely crucial in the case
of dementia especially for younger people with dementia when they
have to give up their jobs: the impact on family incomes can be
absolutely devastating. So it is absolutely crucial that people
are given access to the welfare benefits, which do go a long way
to help people. We are also concerned about the barrier between
diagnosis and the next lot of services.
(Dr McKinlay) Could I perhaps add that I think
that opens up what is really a key issue in brain injury. We have
heard that only a small proportion actually go to neurosurgery.
Neurosurgeons, with a few exceptions, of which this is one, are
really interested in doing neurosurgery, as they should be. When
a patient does not require an operation, they are then discharged.
Patients are often discharged from neurosurgery hours after injury
with only very cursory follow-up focusing on particular issues.
They are then dispersed to general hospitals, to a variety of
different wards—casualty, orthopaedic and so on—all
round the country. There are many others who are never in the
neurosurgeon's hands. The neurosurgeon's consulting is done by
telephone. They perhaps have a scan done in Monklands, there is
nothing to be done surgically, they do not go to the neurosurgeons.
This means that these patients are dispersed among a very wide
variety of different specialists and the knowledge of rehabilitation,
of what it can achieve, the knowledge of the long-term problem
of these patients, just is not there. So there is a lack of a
referral route and many of them simply fail to make contact with
Scotcare, Astley Ainslie, Rehab, the things that are there, but
the majority, in fact, who would benefit from Rehab never come
anywhere near it and the result is a tremendous waste of human
and probably financial resources as they fail to return to work,
fail to make the best of things.
Mr McAllion
26. On the lack of referral, I think it
was Mr Davies who mentioned earlier on that the forthcoming re-organisation
of the health service which takes place in April will move the
gaps around rather than fill the gaps. I know in my own area we
are going down from four trusts to two trusts in Tayside. One
of them is a huge primary care trust and its budget will go up
from £60 million to £200 million. Does that cause concern
for you in the kind of services that will be supplied in future?
(Mr Davies) I think we are concerned that without
a proper strategy being in place, then what will happen is that
the holes will get moved around. In principle, if you are amalgamating
trusts you should make the holes smaller and the mesh finer, if
you like to continue the analogy. The possibility is that through
a process of harmonisation they all end up with there just being
more of them and just bigger. So that is why our view is that
there is a need for good education of those trusts and a need
for a proper strategy in place to deal with these less common,
more complex issues.
27. Alzheimer Scotland in their evidence
say that while "age-specific home support, respite care and
long-stay care are essential for younger people with dementia
... there is almost a complete absence of such facilities in Scotland".
Would you like to enlarge on the word "almost"? Why
"almost"?
(Mr Jackson) "Almost" because there
are some services. There is a project in Edinburgh funded by Allied
Dunbar for younger people with dementia. There is also the use
of Marchall House provided by Lothian Health Care, which provides
24 places for long-term care and some respite care. In what was
Central Region, which is now the separate local authorities of
Falkirk, Stirling and Clackmannan, the three authorities collaborate
in a dementia care initiative which provides a number of very
innovative, small-scale projects which are particularly targeted
on younger people with dementia. We also have a project in Glasgow
using Mental Illness Specific Grant, which actually reaches some
47 people. Numerically for Greater Glasgow that is a very small
number and so that is our argument for saying there are almost
no specialist services throughout Scotland.
28. And you prefer to see these four different
examples as best practice, or are there examples of best practice
anywhere else, in England, for example?
(Mr Jackson) In England my understanding is that
there is a similar problem, but again where there are particular
local authorities or particular consultants that have developed
specialist services for younger people, they are irregularly placed
but they do exist. So we have examples in Scotland, we have examples
in the rest of the United Kingdom of how specialist services can
be provided but they are very much the exception rather than the
rule.
29. But these are best practice and these
are the kinds of things we should be building upon in Scotland?
(Mr Jackson) Yes.
30. Just explain to the Committee why it
is essential that the facilities should be age-specific?
(Mr Jackson) I think, Chairman, if you put yourself
in the position of any one of us in the room being given the diagnosis
that we have got dementia and then, when you need to go to a day
centre, you discover that you are 20 or 30 years younger than
anyone else in the room, where people are interested in activities
or interests of 20 or 30 years ago, it means that you are not
treated as the person you are. You are treated as an older person
when (a) you are not and (b) your interests are different. Certainly
younger people with dementia in their early stages of the illness
say they want services organised around their own needs, not services
for older people in general.
31. You say younger people. How young can
people actually get dementia?
(Mr Jackson) There are exceptionally small numbers
under 40. You would normally say younger people with dementia
starts around 40 and the incidence accelerates up through the
ages. If you used under 65 as the definition of younger people
with dementia, I would have given you the figure of 5,000 instead
of 2,500. So they are numerically quite small and they are dispersed
across the community. You may be only one of a small percentage,
but to paraphrase the late Harold Wilson on unemployment, if you
have dementia you have it 100 per cent. We have to be careful
with how we use the figures because for you it has a catastrophic
effect on your life, the impact on your family, especially those
families where you have children, or if you have a second marriage,
again the impact where you might have very young children is absolutely
devastating. So what these people are looking for is services
that relate to them as they are, not as to the general needs of
older people with dementia.
32. Does everyone else share Alzheimer's
view about this problem?
(Dr Gentleman) Yes. If you take stroke as another
example, which has many similarities with head injury—a
sudden devastating event that takes place—my experience
of looking after patients who have had a stroke is that the ones
in their fifties, for example, do not want to be bracketed together
with the ones in their seventies or eighties, whom they see as
old men and old women. They see themselves as having been fit,
active adults with lives, careers, mortgages, children, commitments
and so on, and they want the services provided to them to reflect
the needs they have, not to be bracketed with another group of
people. Stroke is another example of a condition which can affect
younger people. The youngest I have treated in the last year was
23 and, in a sense, someone like that will have more in common
with a head-injured teenager than they will with somebody in their
seventies who happens to have had a stroke.
(Ms McLaughlin) I would fully endorse what has
been said by those before me but I would add that one other aspect
about Huntington's disease is the choreic movements that come
with the disorder, which means that as the person progresses they
often need much more space to move around in and I know of several
occasions where those particular clients have not fitted into
an ordinary residential or hospital care placement, basically
because of the space they needed to move around in. In fact, it
could cause some particular difficulties for those who were living
within the same confines.
(Mr Davies) Of course, head injury is something
that can affect very young people and we see in the figures we
have provided something over 5,000 a year young people aged under
13 in Scotland sustain head injuries. Those problems will be there
for a very long time, for the whole of their lives very often,
and are poorly recognised by the downstream services, by the education
services and so forth, and because the brain remains a dynamic
system through into the late teens, the problems and the effects
of the head injury may not be seen for ten or twelve years after
the actual event. So there are very major problems for that group.
(Dr McKinlay) If I may say so, it used to be the
case that people believed that children did very well after head
injury and many health professionals still believe that to be
so, but the evidence in the last ten years or so, including some
very large follow-ups, shows that if you follow them up downstream
over ten or twenty years, in fact, it is much worse to have a
head injury as a young children than it is as an adult and that
the social and occupational difficulties become magnified as the
years go by.
(Dr Simpson) The other issue which I must underline
is the hereditary nature of Huntington's disease. We are talking
about an affected group in their thirties and forties, a young
group inappropriately placed often for care. There is significant
morbidity within the families which is rarely addressed and there
are zero resources for enabling young people to cope with this
disease within their families. Traditional genetic clinics can
tell them their risks. If they are under 18 they may not even
be able to get a test if they wish, and so we have the situation
of school drop-out, drug abuse, leaving home and so on, which
I have seen in my own practice, which is very difficult indeed
to resource and to cope with.
Mr Welsh
33. There seems to be a gap opening up between
medical needs and the everyday living problems. In your opening
statements two things struck me, the phrases "recognition
of needs" and "lack of identification and early diagnosis".
That later was described as a medical and social division; in
other words, people seem to be being caught between two stools,
that there is a need for medical resources and there is also a
need to follow through to assist everyday living, and because
of these two themes that means that overall needs are not being
met; in other words, it is not just a medical problem, it is not
just a social problem, it can be both. How can that be solved
and who should be solving it?
(Dr Simpson) I am happy to answer that initially.
I think co-ordinated care is the answer. Once a diagnosis is made
and people understand the disease and its progression, whether
it is Huntington's or any of the others that my colleagues here
are representing, then appropriate care can be asked for and sought
out. Whether it is available in our various regions is another
matter but if it can be described as necessary for proper support
of the families and that individual, we would hope to create that
awareness of that need and hope to have it resourced. For instance,
I am aware that simple day sitting care is necessary for Huntington's
disease; it is virtually impossible to find. Day care, when a
patient is taken out to during the day only, is virtually impossible
to find but I keep asking for it and now and again I get a placement
and so on. So we need co-ordinated care. Units for the care of
these various disorders would be ideal in that the recognition
of the disease and the resources available would then be established.
Miss Begg
34. My question is really, where are these
people just now? I, from my own family background, had an uncle
who had Parkinson's and on the other side of the family an aunt
who had hydrocephalus, and so both of them found themselves when
they were my age in a geriatric ward. This was over 20 years ago
and my cousins would go up to the hospital every night and every
weekend. That was their life and they both had young families.
From what you are saying, is that still the case?
(Dr Simpson) Yes.
35. I am quite horrified that there are
people who are younger than many of the people here who are sitting
languishing, and both my uncle and aunt vegetated; there was no
stimulation, nothing for either of them. So they are still sitting
in geriatric wards?
(Dr Simpson) This still happens.
36. So in effect, long-stay care of the
elderly beds as well in long-term hospitals? That is quite frightening.
(Dr Simpson) Yes.
(Mr Jackson) Chairman, could I come in and answer
Mr Welsh's question. There is a short-term solution to that problem,
or a less radical solution, which is that everyone is appointed
a key worker who is working with that person through the progression
of their illness and it follows straight on from diagnosis. If
that happened automatically, it would not matter too much whether
we used the current structures. A more radical solution is to
say that we should consider re-examining the boundaries between
health care and social care so that it automatically happens and
the budgets go along with the needs of the person and it is not
a case of, "Is it in the social work budget or is it in the
health budget?"
Mr Clarke
37. On that point, may I ask a question.
There is not respite care and there is not constant care for certain
people?
(Dr Simpson) That is correct.
38. I know that in the Lothians. There is
not. I am asking the question, is that the case throughout the
whole of Scotland?
(Dr Simpson) Yes.
39. It was the Sue Ryder Home we had to
put a person into. I am saying me, not me but the Huntington's
people got this person into the Sue Ryder Home down in Duns who
came from Gorebridge in my constituency. This is what started
my interested in the Huntington's Association for the positions
and respite care. People are going into respite care. They are
going to live in a hospital in a geriatric ward. Dr Hurd, who
runs the whole thing, knows they should not be there but it is
better than nothing at all. I am finding that in my own area and
I have been to the top. I have met them all and I get the statistics
shoved up my nose that it is only a very small proportion, but
to the person concerned and to the family concerned it is 100
per cent. I am answering my own question, but is that the case
in Scotland?
(Ms Symington) May I say on that question of respite
care, in the Head Injuries Trust we are seeing people for a lot
longer than many of the other services. It can be for years and
years. We can sometimes be the only provider of support to the
individual and many of our clients, being younger men, have had
to go back and live with parents whom they had either left or
had intended to leave, so their ageing parents are coping with
someone who can be very difficult a lot of the time, and to enable
them to continue to cope they need regular, structured, appropriate
respite. Whether it is residential or whether it is home-based
should be decided on the needs of those individuals. On the reverse
side of it, the younger men again who are married or have young
families, their children need respite from this person who can
often be quite difficult, have mood swings, be very changeable;
it is very difficult for them to have their friends in and around
their house in the way they would expect to and they need some
form of respite as well.
Chairman: Before I
bring in anyone else, I will ask Michael Moore because Michael
was wanting to concentrate on respite care and there is a follow-up
point you wanted to raise and we can get the answer to both.
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