Examination of witnesses (Questions 40
THURSDAY 15 MARCH 2001
WHEELER and MS
40. You are also working with those who have
experienced strokes as well as people involved in traumatic brain
injury. What is the breakdown of numbers that we are talking about?
(Mr Curley) In Headway's case we surveyed all our
groups last year and found that just over one half of Headway
groups are now providing some kind of support to stroke survivors
and indeed to survivors of other types of acquired brain injury,
people who maybe have had an operation for a benign brain tumour,
people who have had encephalitis and so on. In Headway's terms
we reckon that about ten per cent of the people we are helping
throughout the movement have had acquired brain injury other than
traumatic brain injury.
41. Would the balance of services and support
differ in any way?
(Mr Curley) That we provide or that are provided generally?
42. That are provided or need to be provided.
(Mr Curley) If you started to compare where we are
in terms of services for people with traumatic brain injury, say,
to people who have had strokes, we are light years behind. Last
year national clinical guidelines for stroke were published and
that accelerated the process of improvement. All over the country,
as a result of those guidelines, health authorities are requiring
trusts to produce care pathways for stroke. There are very few
examples where there are published care pathways for people with
traumatic brain injury, so we are long way behind stroke provision
in Headway's view.
43. Could the provision be built on to that
which exists for stroke rehabilitation or does it need to be provided
separately and distinctly?
(Mr Curley) I think there are lots of distinctions
between the needs of people who have survived a stroke and the
people who have had a traumatic brain injury. One of the most
important is that most people who have had a traumatic brain injury
are young men under the age of 35 who ought to have a lifetime's
productive economic activity ahead of them and who, with proper
rehabilitation, could have, whereas for stroke survivors many
of those people are over the age of 60.
44. Could I take you on to the question of co-ordination
between services, whether it be health authority or social services,
the interlocking with the benefits system? I think Mrs Hicks gave
us a very clear example of a lack of joined-up thinking in terms
of her own experience. How well do those agencies, clearly the
Benefits Agency and the Employment Service, work together in such
(Mr Curley) Again, in terms of our own experience
from the people who contact us and the people we talk to in Headway
groups, all too often the Benefits Agency shows it has very little
understanding of brain injury. This is particularly noticeable
where a general practitioners carry out assessments for disability
living allowance. All too often we hear of cases where people
with a brain injury are either refused a disability living allowance
or have been receiving it and then the allowance is withdrawn?
The commonest problem there is that the assessor and the assessment
process do not enable the person to express the huge cognitive
problems they have got. I have lovely classic stories such as
the doctor asks the survivor, "Do you enjoy gardening?",
and the survivor says, "Oh yes, I love gardening", but
the carer interrupts and says, "But he has not gardened for
ten years". If you are not careful, if there is not a carer
there or, as often happens, the carer's opinion is excluded, or
the carer is told to leave the room while the assessment takes
place or is told not to speak, then doctor says, "Do you
enjoy gardening?", tick, "Yes", and so the process
would go on. There are big problems with the ignorance within
the Benefits Agency assessment processes of the severe problems
people face, which are not to do with physical disability but
to do with cognitive disability.
45. I noticed Mr Wheeler was nodding while you
were speaking there. I presume he would agree with that. I assume
you have had some personal experience.
(Mr Wheeler) Not quite as extreme as what Kevin was
talking about there. The problem I had was when I took medical
retirement and went to Rehab. My intention was to be back at work.
I wanted to be back at work. That was very important to me, so
I was on a pension through the Post Office. That was fine. But
for me to try and get disability allowance, I was able to get
disability allowance but (and I might be incorrect with my figures
here) it was about three or four months and I still had not got
a job then so I had to cope just on the pension. I did work out
my finances and my brother helped me of course, and so I was able
to cope, but I was not very happy that I was not able to get the
disability allowance for very long. I am about 90 per cent sure
of this, but part of that was due to the fact that I had too much
savings and I was very frustrated about that because, being a
postman, which is what I was before I took medical retirement,
as I am sure you will know the pay base was not very high, I thought,
"I have saved my money and my disability allowance has been
closed within a few months". I thought it was rather unfair.
46. Can I ask generally, perhaps to Jenny Garber
or to Kevin Curley, about the level of vocational rehabilitation
services that may exist through the Employment Service or elsewhere
and how people access that?
(Ms Garber) My experience is that again there are
pockets of good practice but generally speaking you are going
to come up against the same barrier of ignorance about the hidden
parts of the disability. Even where you have disablement employment
advisers and people go through the Employment Service process
there may be lack of understanding of exactly what that client
is going to need in terms of structuring a workplace to make it
viable for them. Secondly, there is a really difficult problem
with the length of work placements that the Department of Employment
can find for people attempting to return to work because they
work on a six-week placement maximum. That is barely long enough
for a person with cognitive difficulties to have got their way
round that system at all. Then they have to leave and they cannot
return to that place, they have got to go to another one, so you
start the process all over again. There is alsoand this
is a very recent experience of mine in the NHS Trust I work ina
push on the part of the people giving those placements, the employers,
to make it right for the client, so they tend to write very good
reports at the end of a placement which actually does not describe
all of the details that you as a clinician would want to be described
in order to make best use of those practice experiences. It is
a very difficult system. It does not really fit with the need
for the client group.
47. How well do the agencies, employment, benefits,
link in with the voluntary sector, particularly Headway?
(Mr Curley) Again it is so difficult to generalise
because the position is very varied across the country. I would
like to tell you about one example of particularly good practice
because it is very heartening if only we could replicate this
all over the country. This is from Aylesbury Vale where the community
head injury service there for the past three years has co-operated
with the Employment Service, with social services and with Headway
and has drawn in funding from all those places plus European money
and as a resultI saw the statistic this weekno less
than 64 per cent of the patients with severe brain injury who
have been through their vocational rehabilitation programme in
Aylesbury Vale went on to either full time or part time employment
and were still in employment at the one-year follow-up stage.
That is astonishing. It is such good practice that the NHS awarded
a Nye Bevan award to the Aylesbury Vale service last year. I am
afraid that is very rare. In many parts of the country I think
it is fair to say that there will be no specialist vocational
rehabilitation for people with brain injury.
48. Ms Garber, how wide is the concept case
management and how widely do you think it is actually used?
(Ms Garber) I think the concept of case management
is critical. The evidence that you have heard this morning gives
you a feel for a very tough and complex area of disability which
needs careful managing. The case managers as titled are not used
within the NHS or within social services but I do not think the
title matters. I think the important thing is to have somebody
who can take an overview, who can manage transitions, who can
manage referrals on, and that person has to be somebody who is
listened to by the clinical teams. My own view is that that can
be done perfectly adequately by a specialist social worker but
we need to have local authorities taking that aspect of work seriously
enough to devote resources to it.
49. It is not widely used at the moment?
(Ms Garber) It is not widely used. There will be social
workers in some places, there will be care managers, but because
of the priorities of the department they come from they are rarely
able to give enough time to do sufficiently the job.
50. There has been recently announced the National
Service Framework for people with long term conditions and the
NICE management guidelines presumably are going to help with this.
Have you had any input in that process or will you have any?
(Mr Curley) Speaking for Headway, we have been assured
by NICE that there will be patient representatives on the development
group for head injury clinical guidelines and we would hope very
much that Headway will be able to appoint one of those patient
representatives to that group. We would attach enormous importance
to those clinical guidelines. I mentioned earlier that we have
seen what a big difference they are making in terms of stroke
services and we believe that potentially they could make a big
difference in terms of head injury services. Obviously we welcome
the National Service Framework. If it is going to spell out national
standards for brain injury services and what they aim to achieve,
how they should be developed and delivered, how to measure performance
in every part of the country, this would be considerable progress.
The only cautionary note I would make is that I looked back at
the National Service Framework for mental health a few days ago
and in his introduction Frank Dobson said, "... and we are
accompanying this National Service Framework with an extra £700
million over the next three years". In terms of brain injury
services money is not all of the answer, as you have heard from
my colleagues. There are lots of other issues to do with training
and attitude, but money has to be part of the solution. If rehabilitation,
as we know from many people with brain injury, costs £50,000
per person even for half a year's rehabilitation, then the National
Service Framework would have to be accompanied by extra resources.
51. But you have got input into the process
of writing the National Service Framework?
(Mr Curley) Yes, we are leading members of the Neurological
Alliance and we have been invited to be involved in the process.
(Ms Garber) The United Kingdom Acquired Brain Injury
Forum, of which I am part of the Committee, would also want to
be part of that process, clearly, and are beginning some work
on integrated service frameworks.
Dr Brand: We had a debate in Westminster Hall
on neurological services and it was raised that we need more resources.
52. Just very quickly. I had a friend whose
son was knocked off of a bike in the Strandthis is a good
few years agoand I tried to help the family. He ended up
in Putney Hospital and subsequently died but all the things you
have described I certainly experienced with them. Just to help
us as we prepare the report and recommendations which we hope
the Government of the day will react on. Are you really saying,
all of you, that it is all down to more money or is there something
more simple that we could do to help?
(Mr Curley) I think there have to be more resources.
There are simply not enough beds in dedicated rehabilitation centres
or places within community based rehabilitation teams. I think
it is clear from what my colleagues have said it is also about
training. It is also about access to information. It is also about
this wider concern to respect the patient and respect the carer
and recognise that the carer can be a crucial part of the solution,
a crucial part of the rehabilitation of people rather than an
old fashioned attitude of excluding the carer "please go
out of the room while I talk to the patient". So there is
much more to it than money I think.
(Ms Garber) Yes, I would agree. I think it is stimulating
a push towards training and accreditation and the understanding
of brain injuries as a specific disability.
53. Just a final one to Mr Curley. In their
evidence the Department of Health talk about getting people to
have functional independence and their Job Retention and Rehabilitation
Pilots. To what extent has Headway been consulted or involved
(Mr Curley) If this is in connection with the requirement
that every health authority produces a joint investment programme
on welfare to work for disabled people then I am confident that
our local groups in some areas are being involved in that process.
In terms of our UK wide operation we have not been involved in
Chairman: If there are no further points can
I thank our witnesses for their co-operation. I think Mr Curley
and Ms Garber would have no objection to me particularly thanking
Mr Wheeler and Mrs Hicks for coming along and sharing with the
Committee your own personal situations. It has been most helpful.
If there are issues you think we have missed or you wish to expand
upon which we have not had time for, please feel free to write
to us. If you wish to stay for the rest of the session we will
be very pleased to see you. Thank you very much.