Examination of witnesses (Questions 40
- 55)
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
Mr Moore
40. There is the danger the way the questioning
goes that by the time we get to the things I was going to ask
probably most of the themes have been covered, and I apologise
if I am asking similar questions to some of the ones you have
already heard. One of the things I think we have lacked so far—we
have got impressions and we are all very sympathetically sitting
around saying we can understand that but can we actually get some
specifics about how many? You talked about something like 13,500
people with traumatic brain injury per annum who require assistance
either socially or medically for a long time afterwards. How many
of those families actually get access to respite care on a regular
basis, and if we all had that magic wand which sadly we do not
have, what would be the model if we were able to approach it,
and how does that affect the other groups as well?
(Dr McKinlay) Could I say, first of all, that
many will not require respite care out of that group, so they
are a relatively small proportion. The 13,500 do not have trivial
injuries. They either have a skull fracture or an intercranial
injury, but many of them will, nevertheless, make a good recovery.
We think about 5,700 have moderate to severe injuries and 800
have severe. It is going to be a proportion of that 800 new per
annum who will require respite, I would have thought.
41. How much respite?
(Mr Davies) I think it is important not to be
too narrow in the way we define the term "respite".
The Head Injuries Trust Scotland, and my own organisation, Rehab
provide a range of different things for people to do during the
day. Our services are concerned with people returning to work,
and when we first started those Dr McKinlay and colleagues did
an evaluation of the impact on the stress levels of the families
of the people who were in the services and their stress levels
went down dramatically once the people came in because now their
family member had something to do all day and was not around the
house annoying them and so forth. So we know that, simply by providing
appropriate activities and helping people to move on, this has
also a respite effect, thought it is not called respite, and the
people who have the potential to benefit from those services is
a much larger number. We estimate 2,000 new cases a year, something
of that order, in Scotland.
42. I am trying to get a feel for how adequate
provision is, so how far away are we or are we actually perfectly
in equilibrium?
(Ms Symington) In our client group we have a total
of over 600 people who have been registered with us over the last
five years, and of those, a handful receive regular, planned respite.
43. And Alzheimer's?
(Mr Jackson) Of the 2,500 people younger people
with dementia, if we take the figures that are there from Forth
Valley and from Tayside, some 70 to 80 per cent. will be known
to the services. That is 1,600, but of those 1,600 when questioned,
most of them will say that they receive inadequate services. I
am happy to write to the Committee with the figures because I
have not got them at the tip of my memory.
Chairman
44. Thank you, that will be helpful.
(Mr Jackson) But there was another report written
about respite care some years ago, Chairman, called The Patchwork
Quilt, which was funded by the Scottish Office, and it is
possible to do calculations from the figures contained in that
report showing that there is a major shortfall in respite care
and although the Scottish Office have issued guidance since this
report and have been encouraging local authorities, from the point
of view of the people with dementia we are still reporting a major
shortfall.
(Ms McLaughlin) There have been no studies done
particularly within the Huntington's group with regard to the
Scottish-wide respite figures, apart from a small study in Aberdeen.
(Dr Simpson) That is out-of-date but at that time
about 5 per cent. of the affected group were receiving respite
care and a far greater number than that required it, and the respite
care was inappropriate and it was in a nursing home with no adequate
knowledge of the disease.
(Ms McLaughlin) What I am aware of is regular
enquiries seeking respite and there is no appropriate respite.
There is not one particularly appropriate respite place within
Scotland that we could recommend. There are obviously respite
beds available at various locations within the health service
or nursing homes but I have to say that there is not one which
would come to mind that I could recommend to someone particularly,
apart from the Sue Ryder Home in Marchmont. That is the only place
that I am aware of that would readily take and be able to take
and to provide an appropriate form of care for people with Huntington's.
(Dr McKinlay) Could I say that, as far as brain
injury goes, it would be wrong to be too gloomy. I first worked
in this field in 1967 and then there was absolutely nothing and
the provision here contrasted sharply with what we found in the
States or France or Germany. We do now have the nucleus of services
for the brain injured. We have the three national units, Scotcare,
Astley and Fergusson; we have the Head Injuries Trust and Headway,
which provide information, respite, volunteer programmes, and
we have Rehab Scotland providing vocational re-entry. So we have
the nucleus, we have services which work and which could be built
on. Our problems are really lack of referral into them, which
means that people do not get equal access—it depends on
your luck whether someone who knows about them refers you or not;
the lack of services for children and this problem of the holes,
the boundaries, the patient who ends up languishing in a psychiatric
ward for six months while the social workers and the hospital
argue about who is going to pay. These, I think, are the outstanding
problems.
45. One of the other things that was raised—and
again could I, for the record, ask you to give us some specifics
of it—was the inappropriateness of some care that is provided
because of age gaps and so on. Is that because of the nature of
the treatment that is being offered or is it because of the socialising
aspect of it? The comment was made earlier on about people in
their fifties who look at the people around them in their seventies
and say, "These are old people. Why am I here?" Again,
could I ask you to tease out some specifics about the nature of
the ideal solution you would like to move towards for each of
your client groups?
(Dr Gentleman) From the head injury point of view,
there needs to be, as it were, a basket of services ranging at
one end of the spectrum from quite intensive rehabilitation facilities
designed to restore somebody as close as possible to the way they
were before, and at the other end of the spectrum, recognition
that that person will never be as he was before but, nevertheless,
is entitled to have as good a quality of life as can be found,
and that will obviously include, for example, respite care. There
are some good respite facilities around. Some of them are not
age-specific; some of them are. What is often assumed—and
I do not think this has been specifically said yet this morning—is
that the families will gladly take on the role of informal carer
and I think there is a very great gap between what is and what
should be provided to support families who are thrust, due to
force of circumstances, into this role of carer. I think those
who are concerned about this try and do their best to make sure
the family is protected as well as the patient when the arrangements
are set up in order to provide for long-term support to the patient,
because otherwise what you get is a situation which I have encountered
on a number of occasions, which is that, due to the strain on
the carer, family tensions build up, small rows become big rows
and eventually the wife decides she is going to divorce her husband
or children are estranged or whatever, and the patient or ex-patient
and the family are left worse off than they were at the beginning.
If, on the other hand, you can support the family—and respite
is certainly part of that but only one part of that—then
you can, as it were, keep the ship afloat for a very much longer
period of time. Sadly, these are things which are much more difficult
to measure than some other things which can be measured. Perhaps
for that reason I do not know that there are any very hard numbers
around which we can give you on that but perhaps Peter or Catherine
can give you harder numbers than I can about that. I can certainly
give you a feel for the fact that there is a considerable gap
between the amount of support which carers get and what I believe
they should get in a caring society.
(Mr Davies) To continue with a couple of points,
because I do not want to go on too long on this, I think that
from our point of view and the people we work with, the issue
is not about inappropriate services; it is that you just do not
get the services. They disappear into the woodwork and maybe get
picked up by the GP, maybe by the social worker. Again referring
to Professor Teasdale's recent study, only a small minority of
those 3,005 got any treatment and of those who got it, what they
got was physiotherapy, which was the predominant service, not
because it is what they needed but because it was what was available,
and that phenomenon has been found in repeated studies done through
the years. The second point is that it is important also to look
at the economic impact of this. A European study a few years ago
found that in 35 per cent. of cases with severe injury, within
five years a family member gave up work to look after the person,
which has other repercussions, economic and social. The third
point is that there is a need, and one of the things that the
Scottish Head Injury Forum is proposing to work on next year as
part of its work is the need to develop clear criteria for referral.
If we look at one or two cases of good practice, for example the
Through-Care Project in Glasgow Royal Infirmary which picks up
people at the A&E Department and follows them through, it
does have an impact on the services that people get and how appropriate
they are. If you follow them through they do not get lost in the
system and we suspect, though we cannot demonstrate it yet, that
they will actually have a better outcome in the long term because
they get appropriate services.
(Ms McLaughlin) With regard to our own client
group—one of the great problems is that the condition is
not understood at the highest level of commissioning and planning,
and because of that there are marked physical, behavioural and
economic problems, that we have not even touched on. Speech and
language problems, dietetic and physiotherapy problems that people
do not get regularly looked at. Even within the medical professions
there is a lack of education and understanding that early intervention
from those three particular areas could certainly greatly enhance
that person's quality of life. I think that compounds our problems
for accessing services because, if they do not fit into the mental
health strategy or the young physically disabled strategy, clearly
then we get missed again and neither of these groups develop this
expertise.
Chairman: Unfortunately,
we have only ten minutes left and your answers have led us nicely
to the concluding points that we wanted to put to you, which we
need to get further clarification on. Had you anything further,
Michael?
Mr Moore: One thing
it would be helpful to know at some stage is, you have talked
about the lack of support for carers and how much training, if
any, happens for carers. It would be useful to know that. Maybe
that can be caught up in the answer to Anne Begg's question.
Miss Begg
46. What has become obvious this morning
is that there is a need for co-ordination, there is a need to
break down the barriers between what is medical and what is social
and a need for a more multi-agency approach. There is not just
a simple solution. The Scottish Head Injury Forum say in their
submission they would like to see "a multi-agency and cross
departmental working group" convened "to consider and
make concrete proposals and recommendations on planning, commissioning
and funding of services for adults and children with [obviously]
traumatic brain injury" because that is your position on
similar needs. Do you all think that that is the way forward,
that part of the solution is to set up a working group that can
start to co-ordinate all of those things and look at and take
the arguments we have heard this morning forward and start to
find solutions? Do you think it should be the different groups
or do you think one group Scotland-wide would be able to look
at all the different aspects for the different conditions we have
heard about this morning?
(Ms McLaughlin) If I could answer that, it would
also answer Mr Welsh's question which I never quite got round
to answering. On the short-term element I put down four key points,
the first being that I really feel that we need a task force,
which has to be multi-agency commissioned at the highest level
to enable all these client groups initially to get together and
take this forward. The next point was that within this group we
could determine shared priorities and then also look at those
singular priorities that were specific to our own client groups.
If this group could map and perhaps audit the current services
that are now available and then develop the strategy that would
help towards the development of a much improved services on all
three client groups.
47. When you say "at the highest level"
you are talking about the Secretary of State or the Minister for
Health?
(Ms McLaughlin) Yes. My own experience is that
trying to do it at a local level, even a local health board level,
is very cumbersome and does not work.
48. Is part of that because of the numbers?
Although the numbers are quite big they are actually quite small
within the different health board areas and you really do need
an all-Scotland approach?
(Ms McLaughlin) Yes. The numbers may be small
but, as you say, they are absolutely disproportionate to the needs
and I think those two key elements, small but disproportionate,
compound that problem of doing it locally.
49. Does everybody else see that as a way
forward?
(Mr Davies) Yes, basically.
Mr Welsh
50. In many ways we have been looking at
the problems. However, we have heard about a nucleus of assistance
to the brain injury service. Before I leave it, has any progress
been made because in many ways your organisations are shining
a very bright light into previously dark areas where families
simply coped with long-term problems? Do you think that any progress
has been made along similar lines to brain injury?
(Ms McLaughlin) I have to say not in Huntington's
Disease. I think that is the honest answer. With regard to services
and provision, I could not answer that otherwise, apart from the
one exception that there is a management clinic operated by Dr
Sheila Simpson, which is the only light that I see. I have to
say that is the current situation.
(Mr Jackson) May I say for people with dementia
I think that there is some recognition. What is striking is how
few local authorities and health boards have translated that recognition
into specific services. There are very small numbers of services:
one in Edinburgh, one in Glasgow, one in Central Region, one in
Kirkcaldy also and there is Marchall House in Lothian. These are
the only specific services we can identify for younger people
with dementia all over Scotland, so I am afraid we cannot be optimistic.
51. It is depressing. I know that Huntington's
chorea people are put into mental institutions where they lack
stimulation and where, in fact, they were inappropriately being
cared for. The Scottish Office would say that while it is acknowledged
that long-term institutional care within psychiatric hospitals
is not always appropriate, the number of patients in these categories
are small and they say the health boards and NH trusts have to
meet all the health needs locally within the resources available
to them. Is that a fair point? No. Okay. The Huntington's Association
has said that what is required is a re-allocation of resources.
Could you explain what is meant by that and how it could be done?
(Ms McLaughlin) What we feel is that there is
such a lack of understanding at the moment of Huntington's Disease
within various health board and social services resources that
are available. People are often misplaced in long-term psychiatric
wards, which can be very costly and they are still not getting
appropriate services within that. There is a lack of community-based
facilities with regards to HD and in that regard the cost implications
of any community based services have never really been looked
at.
(Dr Simpson) May I say that Grampian Region actually
has, in its efforts to decant people from long-stay psychiatric
units, been looking at the possibility of using that money to
fund community care for a small number of Huntington's patients
and, with lobbying, they are considering creating a unit for HD
patients for long-stay and as a resource unit. At the present
time the funding is a major issue and it has not been funded,
but that avenue of using money at present allocated to inappropriate
long-stay care to fund more appropriate care is one which I would
see as a hopeful avenue.
Mr Welsh: Could I
say I did not know about Woody Guthrie and I did not know about
Huntington's chorea until a local group got in touch with me.
I wish you all success in publicising this problem and, hopefully,
getting a solution.
Mr McAllion
52. In the very near future we will see
the publication of the review of the acute services in Scotland.
Is there any threat to the four specialist neurosurgical facilities
in the four cities, and if so, what would your reaction be to
any rationalisation which removed them from any of the four cities?
(Mr Davies) We would be very upset. What is needed
is to make the specialised services more available not less available
and not just at neurosurgery but right through the whole rehabilitation
continuum. I think that is a very important point that needs to
be very clearly established.
(Dr Gentleman) The short answer to your first
question is yes, I believe there is a threat, and the second question
can be answered by saying that to rationalise—which is a
"weasel" word, I think—on fewer than the existing
sites would actually make it more difficult for people to access
the service, and I think personally it would be quite hard to
justify in terms of quality of service or any other argument.
Could I say, though, that the acute services review was quite
imaginative in that it looked beyond the acute services towards
the integration of acute services with rehabilitation. In fact,
I sat on one of the sub-groups specifically to try and bridge
that gap between acute neurosurgical and neurological care, on
the one hand, and neuro-rehabilitation services, and in that sense
we are looking at a little bit more than just to acute services
but to what happens beyond, and that is very welcome.
Chairman
53. Could I ask two final short, quick questions.
Is it more important that institutional care when needed should
be local or should it be appropriate, and to what extent are you
consulted, if at all, by either the Scottish Office or health
authorities when services for your constituents are being planned?
(Dr McKinlay) I think I am answering the question—I
hope I am—in saying that it plainly is important to have
local services but it is also important to have units which are
sufficiently concentrated to have the experience and the expertise
to do the job properly. I feel, and I know that Rehab Scotland
feel, that the answer is to have an outreach from these specialist
services rather than just identify half a body here and there
which is meant somehow to know about these issues and be able
to provide rehab. So to provide things locally as a matter of
outreach from specialist centres is the best approach.
(Dr Simpson) Yes.
(Mr Davies) I think that is a very important point.
The second point, however, is that the Scottish Head Injury Forum's
relationship with the social work services group and the Scottish
Office health department is generally very good, a very good working
relationship and good communication with them. When you get down
to the next level, to a more local level, it is much more variable.
I think that is worth saying, and that depends upon local perceptions
of need and local attitudes and the difficulty then arises that
even if you have, for example, developed a good working relationship,
as we do, if you take, for example, the rehabilitation consultants
in Raigmore Hospital and you discover that they have the services
of a neuropsychologist two days every two months and the waiting
list to see him is 18 months, you begin to understand the nature
of the problem when you get down to local level.
54. I will give you a chance to sum up and
raise any points that has not been covered and I will bring in
Mr McAllion, but you wanted to answer that?
(Ms McLaughlin) Yes. I would say that, with regard
to those two particular points, if an emphasis had to be given
it would be appropriate bearing in mind that there are very little
services, but obviously locally-based services would be very much
on the outreach element, perhaps like the one that our advisers
do now. They get to know the local area, which assists the appropriateness
of services in future.
(Mr Jackson) For people with dementia, Chairman,
we have to try and design local services to be appropriate because
to be local is to be accessible. I do not think we want to go
back to an era where we see centralisation in large asylums miles
from anywhere and I think there is a great challenge for small-scale
projects where staff are multi-skilled, so that there may be only
a small number of younger people with dementia but they maybe
also cope with other younger people with other illnesses from
time to time.
55. We have now come to the summing-up.
Are there any final points you would like to bring to our attention?
Who wants to go first?
(Dr Gentleman) May I try and set our problem in
an international context. We are, sadly, far behind comparable
countries in terms of our provision of services, certainly for
brain-injured patients and I suspect the same is true for the
other conditions as well. If you compare us to North America,
we are simply not in the same league. If you compare us to our
EC partners, we do rather badly. If you look at Australia, Israel,
other comparable countries, we are very much further behind. I
think we are waking up now for the first time to the fact that
we are so far behind. I sometimes travel abroad and quote figures
about numbers of staff, about levels of services, and they think
that this is some elaborate British joke being made by their visitor.
They find it genuinely hard to believe some of the figures which
I quote and I suspect that is a common experience among us on
this side of the table. We do have a long way to go but it would
be wrong to say that nothing has been achieved over the years
in all the fields. I think in head injury we were very pleased
last year that head injury was recognised as a specific disability
by the Minister. We have also seen a gradual but too slow increase
in services. We have seen an acceptance, I think, of the need
to kick down the barriers and to work on a multi-agency basis.
That is absolutely crucial to the way forward and frankly I think
that would have been a very difficult climate to achieve that
even ten and certainly 20 years ago. So in that sense we have
the beginnings of understanding.
(Mr Jackson) May I speak for dementia. I think
we are at a very interesting time for dementia care because for
the first time we are beginning to see some medical treatments
becoming available. They are not wonder drugs, they will not cure
the illness, but they do offer some delaying of the progress of
the illness, and I think the problems that we have described for
younger people with dementia, where there is poor diagnosis or
late diagnosis and there is lack of referral, will become even
more critical because people will be looking for accurate diagnosis,
for appropriate prescriptions of these drugs and for the vast
majority of people who may not in the short term be helped by
these treatments, it becomes even more crucial, having had their
expectations raised, that there is care available.
(Dr Simpson) Chairman, thank you for the opportunity
to say a little more. My first emotion is frustration at the lack
of ability to help these families within Scotland, despite the
fact there is an increasing body of medical and genetic knowledge
about what we can do to give these individuals a better quality
of life for longer and to support the families and those at risk
through very difficult times. We do not have the resources available
to some of our colleagues here today. I see Huntington's disease
very much at the beginning of a lobbying process for more education
and more resources and a greater understanding of the complex
needs of these families, and as a clinical geneticist working
in the field, there are pockets of local knowledge but no resource
for outreach within Scotland.
Chairman: Thank you
for that. I have to say that when Eric Clarke first suggested
this I think we wondered exactly what sort of form it would take
and I would like to express my appreciation to Eric, and I am
sure all the Committee would, because this has been a fascinating,
interesting and worthwhile session this morning. I am only sorry
we did not have more time with you but when we arrange Monday
meetings in Scotland we have to do so several weeks in advance
and we never know what the business of the House of Commons will
be. It is the case that sometimes on a Monday we do not have to
be there until six or seven or even as late as ten. Unfortunately,
today we have to be there at 3.30 and have to catch a plane at
1.30. But I hope you will agree, and I am certain I speak for
all the Committee and staff, if I say that it has been very worthwhile
for us and I hope you will feel it has been for you. In addition
to publishing the evidence you have given us this morning, we
will also publish the written submissions which were made to us
and there is a Scottish Office paper also. So it will be quite
a comprehensive publication and, hopefully, it will be useful
to you in your efforts to improve the situation that exists. No
doubt individual Members of the Committee will also want to see
how they can matter in their own way and in relation to their
own constituencies. So on behalf of the Committee, ladies and
gentlemen, may I thank you all very much for your attendance this
morning and thank you for the evidence that you have given to
us. It is very helpful to us as individual MPs, it adds to our
knowledge, and is very helpful to the work of the Committee. Thank
you very much.
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