Examination of witnesses (Questions 20
- 39)
THURSDAY 15 MARCH 2001
MR KEVIN
CURLEY, MRS
ANGELA HICKS,
MR PETER
WHEELER and MS
JENNY GARBER
20. Obviously you are a specialist in this area,
so could you give us an approximate guess on how many social work
departments are offering a reasonable service as compared to those
who are not offering a reasonable service?
(Ms Garber) That is very difficult. Kevin might be
able to answer that more appropriately because he has just done
some survey work on it.
(Mr Curley) Could I comment on that, Chairman? Headway
wrote to every social services department in England in the second
half of last year and we got a 62 per cent response rate. In response
to the question, "Do you have one or more specialist brain
injury social workers?", the answer was yes in the case of
27 per cent of those departments. However, when you analysed those
responses it turned out that something like half of those people
are in fact social workers within physical disability teams with
quite widespread case loads. Our best guess would be that something
like 13 per cent of social services departments in England have
some kind of specialist social worker. They may be calling that
person a case manager or they may be calling them a brain injury
social worker, and they may be located within a multi-disciplinary
team and they may not.
21. Is that all about resources or is it about
attitude? In other words, do you think it is because they cannot
get the social workers or do you think it is because they do not
think it is a priority for them?
(Mr Curley) The answer to that lies in the other question
we asked, which is, "Do you have any kind of written strategy
or plan for the provision or development of services for people
with traumatic brain injury and their carers?", and only
24 per cent of social services departments that responded had
any kind of written strategy or plan for service provision for
this client group whereas, if you were to ask them, "Do you
have a strategy or plan for people with mental health problems
or for older people?", you would be astonished if they did
not have a strategy or a plan. For this client group we are talking
about 75 per cent of local authority social services departments
having no plan.
22. In other words it is attitude rather than
resources?
(Mr Curley) It is attitude and lack of priority.
Mr Austin
23. Can I ask specifically about the children
who have a parent or a sibling with a traumatic brain injury?
(Ms Garber) I think this is a very worrying area.
If you work, as I have done, alongside families from the point
of trauma right the way through to community re-integration, you
can see the effect on children is quite dramatic. There has not
been a tremendous amount of research done but what there has been
and published is very worrying. There is a very good comparative
study with the children of brain injury families and children
with parents with severe mental illness. What you are looking
at is later on in life disrupted schooling, disruptive behaviour
and quite serious signs of stress. They are a client group that
really needs attention. I do not know of anywhere in the country
that would focus on the children that would give time, even where
you have a specialist social work service focusing on family stress.
It is usually the primary carer who gets the most attention.
24. If a parent thought that there was some
problem later in their child's behaviour which they may attribute
to that, would they have very great difficulty in re-accessing
services, even if they can provide them in the first place?
(Ms Garber) I think you would go through the child
psychiatric services. The worry is that it might not be tracked
back to the cause of that and it would be so much better, surely,
to be preventative rather than wait for a crisis to occur in later
life?
Chairman
25. I was struck by what you said there, Ms
Garber, about good practice often being where the hospital social
worker plays a key role. You heard my question about case managers
or some co-ordinator, some key person, who is there to offer the
kind of support that clearly was not available in the situations
that we have heard about from Mr Wheeler and Mrs Hicks. I was
also struck by something David Turner said—some of you will
know David Turner.
(Ms Garber) Yes.
26. I have known David very many years, as you
probably know. I read his evidence last night and he says that
one of his concerns about local authorities—and he incidentally
has a background of local authority social work as you well know—is
that the lack of recognition has global effects, as he describes
it, that are caused by severe brain damage. He says that the effects
can fall into each of the usual community care plan client groups,
ie, mental health, elderly, learning disabilities, physical disabilities,
but most people with a severe head injury will fit into two, three
or four of these divisions, a great bureaucratic barrier in finding
the right services for the individual and his or her family. I
thought that was a very important point, reinforcing what you
said about the good practice being provided by somebody who is
actually outside the department effectively, based in a hospital,
presumably.
(Ms Garber) I would not say outside the department.
27. I appreciate that, but they are frequently
hospital located. What I am trying to understand is, we are looking
at what could be better practice. Are hospital social workers
key people in this issue? Is this question of the categorisation
an issue that we need to look at particularly closely?
(Ms Garber) I think it might be a false distinction.
I think if you had a brain injury aware local authority who were
prepared to put in a wide service then that service ought to be
able to go in and out of the hospital because your client is coming
through a hospital service but needs to have discharge well planned.
Who better to do that than somebody who understands the longer
term? I would like to see a service that has workers who are placed
wherever; it really does not matter where their base is. Perhaps
I could say a few words about the head injury social work team
that was set up in Sheffield as part of the National Traumatic
Brain Injury Study. What we set up then was a two-person team,
which turned out to be inadequate in terms of staffing, who met
the family at point one, as soon as possible after injury and
then were able to follow across hospital boundaries, so you were
not tied to a particular hospital; you could move with your client,
through to outpatient rehabilitation and then on into the community.
You will appreciate that that actually gives you as the worker
a good idea of the resources of each of the service and treatment
areas that your client is going through but enables the family
to have a person to help them through with transitions. You have
a person who can manage those transitions and manage those discharges
and referrals on. That is exactly what we were talking about.
Where you come up against a great difficulty is the length of
time that the difficulty is going to be with the client. We are
talking about a lifetime access to services, not necessarily of
the same intensity. You need to have something in place in the
community that can then pick up and give people access as they
require later. We are talking about a commitment of time from
local authorities that is probably quite scary if they start looking
at it because it may look like a low volume service initially
but over time it becomes quite a high volume service.
(Mr Curley) Could I make a point about reinforcing
what David Turner said in his evidence about brain injury being
a separate disability and by making a comparison with the situation
in Scottish social work departments. For the past five years every
Scottish local authority social work department, in preparing
its community care plan, had has to identify as a separate category
within the plan the needs of people with brain injury. As a result
that has helped to generate far more priority and attention to
that client group within Scottish social work departments. When
you look at English social work departments' community care plans,
and now most recently health improvement plans which have often
taken in and subsumed the community care plans, you find, as we
did last year, that—we got a hundred per cent response from
English health authorities, so we can say with authority that
only 33 per cent (meaning 33 health authorities) identified the
needs of people with brain injury anywhere in their health improvement
programme. If you make that comparison with Scotland, if there
was a framework within which the health authorities and local
authorities in producing these plans had to identify the way they
were providing and the way they were going to develop services
for people with brain injury, recognising that it is a separate
disability that spans these other distinctions that David Turner
wrote about, that would be a great impetus for change and improvement.
28. Going back to Scotland, I am told that in
Scotland there are social workers based in the neuro-surgery units.
Are they specialising there or are they general hospital social
workers who happen to be attached and they work in other specialisms
as well? Do you know?
(Ms Garber) I do not have the knowledge about everyone.
29. Can you find out?
(Ms Garber) I know again that there are some pockets
of extreme good practice. Kevin is right: with that framework
behind them there is an impetus more for development.
Chairman: I would like to bring Peter Brand
in at this stage. I was going to trespass on his territory by
asking about the way we are moving towards PC teams and also perhaps
we can throw in the issue of care trusts. Obviously we are wrestling
here with the divide between health and social services. One wonders
whether new models might be developed that might address this.
Dr Brand
30. Can I ask a question first of Mr Curley?
Looking at the health improvement programmes and also looking
at your survey returns, and presumably we can assume that 36 per
cent of non-respondents had no interest in brain injury, which
makes the figures even worse, have you looked at how far these
local authorities are away from the tertiary head injury care?
Looking at some of the evidence we have had, one of the big blocks
appears to be between tertiary care and primary care. Most patients
tend to go from tertiary care back into a local secondary care
provision of some sort where any expertise that might have been
available gets lost before people get discharged into the community.
(Ms Garber) Yes; yes.
31. That is a pattern. Do you recognise it in
some of the responses you have had from social services where
they are at the end of a line of expertise and therefore do not
recognise that there is a need?
(Mr Curley) Overall we have found very few returns
from social services departments which suggested that they gave
any priority to this client group and that was the overall finding.
As I said, only 13 per cent as far as we can tell employ any kind
of specialist worker, either operating as a case manager or operating
within a multi-disciplinary team.
32. It might be interesting, Chairman, to find
out whether that 13 per cent are located near centres of neurological
excellence and therefore there is an awareness there, and that
the further you get away from your tertiary care the less the
concern is in social services departments.
(Mr Curley) We have not done that mapping that you
are suggesting and it would be an interesting exercise. Anecdotally
we know of relatively good practice in, for example, Dudley, Nottingham,
Sheffield and Derby. I suppose you could say that that follows
the pattern that you are suggesting.
Dr Brand: There is a real problem in isolated
communities like the Isle of Wight which I represent, where the
incidence is fairly low, of setting up expert services but that
is no excuse for not having an awareness of the need. Do you think
PCTs are going to make a difference in this?
Chairman: And what about care trusts?
Dr Brand
33. I think we do PCTs first and then we will
see whether the model should be care trusts because that of course
combines the responsibilities of both.
(Mr Curley) In Headway we have been struggling to
help local Headway groups to understand the implications of primary
care trusts. About ten months ago I wrote a detailed guideline
for groups on this subject, having spoken to chief executives
of a number of primary care groups and a director of planning
in two health authorities, and at that time (and I think still)
the picture was unclear as to exactly what impact they will have.
As far as I can see there is going to have to be co-ordination
across several primary care trusts in relation, for example, to
the purchasing of specialist rehabilitation for people with brain
injury because the costs are so high. We took a hypothetical example
when I was discussing this with a planning manager in Derby: a
minibus full of young men going to a football match crashes on
a Saturday afternoon and you have eight young men under the age
of 25 with severe head injuries who all live in the same area
of Derby. You could be faced therefore with £800,000 worth
of rehabilitation to find post acute rehabilitation for those
people if they are assessed as needing it. There is no way that
a primary care trust is going to have that kind of budget, that
kind of purchasing power, and therefore the arrangements would
have to go up. It was interesting: we discovered when looking
at the report of the National Specialised Commissioning Group
annual report that the one subject which most regional specialised
commissioning groups have chosen to look into after they have
dealt with the ones they are required to examine by central government
was neurological services and that arose from a particular concern
about how brain injury rehabilitation in some of these regions
was going to be funded, because the word coming from primary care
trusts is that this is not something that they are going to be
able to budget for because the costs can be so enormous.
34. So it is not only the expertise that needs
to be located regionally but the resources also ought to be in
your opinion?
(Mr Curley) I think it is difficult to see how one
primary care trust could have either the expertise or the funds
to deal with the sort of situation I have just described, and
indeed with lesser situations.
35. Mr Wheeler, there was some difficulty in
finding you a place near your home or near your relatives. Was
that because there was not a bed available or because there was
not a contract for your medical needs with the hospital that you
wanted to go to?
(Mr Wheeler) I can only answer that very vaguely because
at the time I was completely out of action. To my knowledge and
from what my brother has told me I think there were no adequate
beds available.
36. That was the one in the Midlands, was it
not? What about the one in Edgware?
(Mr Wheeler) He could not find anything in north London
nearer to where my brother lived at the time, which was Edgware.
There were no suitable beds.
37. Can I ask Mr Curley whether nationally you
have evidence that the disappearance of ECRs (extra contractual
contracts) which meant that money could follow patients, with
OATs, which is out of area treatment, has made a difference? I
certainly am getting evidence about it.
(Mr Curley) Our evidence is anecdotal and it is based
on last year, just over 5,000 enquiries to our information team.
Sixty per cent of those enquiries are from carers and survivors
from brain injury, so it is anecdotal, but we get many stories
of people who are refused out of area treatments at specialist
brain injury assessment and rehabilitation centres despite specialist
reports having been prepared, often by the health authority's
own specialist staff recommending that people have those treatments.
I cannot give you a number throughout the country because I do
not think anybody would collect that information, but anecdotally
we know that this is a common theme of people who telephone Headway
looking for help. It seems to be a problem that these sorts of
out of area treatments are expensive, but it is also often, if
I can put it this way, an arrogance on the part of some health
authorities that because they have something called the rehabilitation
service that can cater for everybody who needs rehabilitation,
even though the rehabilitation service may well be geared up principally
to deal with physical rather than cognitive rehabilitation.
Mrs Gordon
38. Mrs Hicks and Mr Wheeler, you spoke very
eloquently about the support that Headway had given you in the
recovery process and their role in that. I just wondered if there
was anything else that you wanted to say about voluntary sector
help that you received during that process. Perhaps I could ask
Mr Curley about what you feel could be done to help organisations
like yourselves, how you could enhance your role given that you
rely on I think 98 per cent voluntary donations to keep your organisation
going. What would actually help you in your work?
(Mr Wheeler) I would like to make a very important
point which I do not think I had the chance to make. That is that
though I have made a very good recovery and I look a hundred per
cent to everybody round the table, it is very important to have
ongoing treatment and care which is provided both from Headway
and also from Rehab UK. I feel fine but there are still a lot
of psychological problems there and I am sure that would be the
case for everybody who has had serious head injury who has had
the good fortunate to make such a good recovery as myself. I think
that is something that has not really been talked about yet round
the table.
39. How does Headway give you ongoing care?
What do they do?
(Mr Wheeler) For instance, if I am having psychological
problems where I am feeling a bit low, so to speak, and it is
quite difficult for me to put things into perspective, the normal
household things that I could handle with no problems at all in
the past I could possibly get myself into a terrible mess worrying
about, completely unnecessarily it would have appeared to me before
my injury, I can contact people at Headway in Moseley at the hospital
there, and also, quite importantly, at Rehab UK who were the people
who took me on when I decided to take medical retirement which
was through a psychologist who I had who was connected with head
injuries rehabilitation and Headway plus the Post Office Occupational
Health Services, who were excellent when I decided to take medical
retirement. It was a big decision because I was proud to be back
at work and I thought I would work again. The Post Office were
brilliant. The problems at work were the shop floor. Everybody
I felt was against me, which they were not. I do not like to criticise
my work mates. I just found it impossible to cope with the work
place and the bickering and backbiting that you get everywhere
I think in the work place. I thought it was all being aimed at
me. Then, 14 months after my head injury, I had a very bad convulsion
which was a complete backward step for me. I thought I was making
really good progress and I felt awful. I lost all my confidence
and this is why I am saying that the ongoing help provided by
Headway is essential. I can go back to them because although my
confidence is probably about 80 per cent, it is still very brittle
and I need that support.
(Mr Curley) Thank you for the invitation, Chairman.
I had come promising not to say anything about money for Headway
but as you have given me the invitation perhaps I can say two
things. First, most Headway services are delivered locally by
local Headway groups. They are not delivered from the office in
Nottingham where I work. The problem for many local Headway groups
is that although the social services department will contract
with them and pay them a daily rate for providing activity and
long term rehabilitation in a Headway house, they invariably will
not or cannot provide the necessary funds for the development
of new services. All over England you will find that where Headway
groups are trying to develop new services, whether that is long
term rehabilitation or family support or trying to address the
needs of the children in families and so on, they are doing it
with short term money such as National Lottery grants and it is
very fragile indeed. I suspect this is a bigger problem than Headway
and funding from social services for brain injury. There does
need to be a recognition that if the voluntary sector and Headway
groups are going to develop services for people with brain injury
and for families there has to be some development money. You cannot
just pay organisations pounds per person per place in a Headway
house. Otherwise, as I said, the developments will not occur.
The second point I would make is that the Department of Health
has a really useful grant fund for organisations like Headway.
It is called the section 64 fund. It is hopelessly over-stretched
and it would have huge ripple multiplier effects if that small
Department of Health fund were to be increased.
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