Examination of witnesses (Questions 1
- 19)
THURSDAY 15 MARCH 2001
MR KEVIN
CURLEY, MRS
ANGELA HICKS,
MR PETER
WHEELER and MS
JENNY GARBER
Chairman
1. Can I welcome colleagues to this session
of the Committee and particularly welcome and thank our first
group of witnesses. Can I also take the opportunity to place on
record the Committee's thanks to all those people who have submitted
written evidence to this short inquiry. We are very grateful.
We have received a huge amount of information which is very helpful
to the Committee. Can I begin by asking our witnesses to introduce
themselves briefly to the Committee?
(Mrs Hicks) I am Mrs Angela Hicks and I am here because
my husband had a severe brain injury 17 months ago.
(Mr Wheeler) I am Mr Peter Wheeler and I had a serious
head injury in July 1994.
(Mr Curley) I am Kevin Curley and I am the Chief Executive
of Headway—The Brain Injury Association.
(Ms Garber) I am Jenny Garber. I am a social worker
by profession and now a brain injury case manager working both
privately and in an NHS Community Trust.
2. Can I begin by asking Mr Wheeler and Mrs
Hicks to say a little bit about their own experiences, how you
have perceived the services that have been there to support you
in your circumstances, or not there as the case may be? Obviously
we have read lots of submissions where questions have been raised
about people who have had specific difficulties. We want to try
and look at the key themes in relation to what we can perhaps
recommend should be done about addressing some of the problems.
Would you like to describe briefly your experiences to the Committee?
(Mrs Hicks) I would say that the acute care that my
husband received was very good and that there was a strong attention
on his progress, particularly medically. However, that did not
extend to the family and I felt extremely excluded; I felt that
I had very poor information. There was a lack of communication
between professionals and to me. I felt extremely isolated. That
is a theme that has run right through from the very beginning
to where we are now and it continues to date. The most supportive
area I have had has been Headway which has been the only consistent
source of information and support and advice throughout our experience.
3. Just out of interest, where are you from?
(Mrs Hicks) I live in Essex.
4. So your husband was treated at a hospital
in Essex, was he?
(Mrs Hicks) My husband was treated initially at a
general hospital in Essex. He was too critically ill to be transferred
for three days. He was then transferred to a neurological unit
and specialist intensive care where emergency surgery was carried
out. He was very critically ill for some time. He was then transferred
back after three and a half weeks to a general hospital. He was
placed in an orthopaedic ward for two weeks where many of the
staff knew nothing about how to manage a brain-injured patient
with a tracheostomy. By then I had learned a great deal just by
watching and listening and asking questions. He then spent four
months on a general hospital ward where his emotional vulnerability
was acute because the nursing staff did not have the time, expertise
or knowledge to know how to deal with a severely brain injured
patient.
5. If he had had his injury in another part
of the country would the system have been different? Are you aware
of more appropriate care pathways in other areas?
(Mrs Hicks) I am aware through my discussions with
Headway that it is very patchy across the country and where you
live has a strong impact on the type of care you receive. Obviously
it is best to talk to them in more detail. There was a very stark
difference between the five months that he spent in the general
hospital and the subsequent five months that he spent at the Regional
Neurological Rehabilitation Unit at Homerton in Hackney where
both I and he had incredible support. We felt involved, included,
part of the process, part of the solution and not part of the
problem. The comparison is just incredibly stark.
6. So there are models of good practice that
you would point to?
(Mrs Hicks) Absolutely.
7. He ended up on a general nursing ward with
what kind of other patients?
(Mrs Hicks) It was loosely termed the rehabilitation
ward. It was predominantly elderly people. I could not really
match the word "rehabilitation" with the death rate.
It was during the `flu epidemic of late 1999, early 2000.
8. So your experience is quite recent?
(Mrs Hicks) Oh yes. The injury was in October 1999.
9. Mr Wheeler, tell us a bit about what happened
to yourself and your own views on how you have been treated.
(Mr Wheeler) It was a cycling accident in Kent. I
was moved from Canterbury to Atkinson Morley in Wimbledon. The
emergency treatment was fine but then I was moved on to Heartlands(?),
just like Angela's husband. It was an orthopaedic ward which was
totally insignificant once again, and my parents, my brother,
Headway, were the help. My Mum and Dad brought me out of hospital,
I was at home and then Headway came into it as well. Headway in
fact went to Heartlands Hospital in Birmingham, which is near
home. I was transferred there after my coma, and Headway came
to visit me, Mary Boyer who has retired now, and this information
was not given at all to my parents and my brother. They found
out about this quite a while after I returned home. From being
at home they switched me to the Head Injuries Rehabilitation Hospital
in Moseley and I was there for three days a week for treatment
to rehabilitate my memory loss, etc. They could do nothing with
the deafness in the left ear which is for life.
10. You mentioned that you were transferred
on to an orthopaedic ward. Were you having orthopaedic treatment
of any kind at the time or was it just that you were placed on
that ward because there was nowhere else for you to go?
(Mr Wheeler) I was transferred to that ward basically
because it was closer to home. My brother, who lived in Edgware
at the time, attempted to get me transferred to a hospital closer
to Edgware when I was off coma in intensive care, and he had no
help at all with that. That is why I was transferred. There were
no vacancies in Smethwick which would have been suitable for head
injuries. They just transferred me to an orthopaedic ward which
was totally unsuitable.
11. Looking back on your own experience, both
of you, quite recently, you mentioned, Mrs Hicks, that there are
examples of good practice. How do you feel your experience might
have been managed differently? If we are looking at improving
the system, which is the focus of our inquiry, how do we pick
up some of these points, what would have been helpful to you in
relation to your experiences? How could the system have been bettered
in your own situation?
(Mrs Hicks) First of all you have to recognise that
ultimately the family is hopefully going to take care of the person
and work with the person that has the head injury. If you exclude
them and do not involve them then you are likely to set up long
term problems. As I said, the family is part of the solution,
not part of the problem. Therefore, you need clear information
and you need to understand what is happening, what the implications
are for your partner or the person who has had a head injury.
You need to have communication with the professionals. You need
emotional support, which is not forthcoming in any way, shape
or form. That is something that you need to go out and find yourself.
I can say that if it was not for Headway I would not be in a fit
state to talk to you today. You need appropriate treatment with
people who understand the effects of brain injury. I saw numerous
cases of staff who did not understand. I do not blame the staff
for that. I blame inadequate training and inadequate resourcing.
12. Obviously you have had great support from
Headway. One of the things that I have learned as a member of
this Select Committee is that so often people who are facing particular
problems are often better helped by those who have had the same
problems themselves. I have certainly found that in mental health
on many occasions. Are you arguing on that basis that the state,
local authorities and health authorities can never offer that
kind of insight into what you are going through?
(Mrs Hicks) No.
13. Or are you saying that there are steps that
can be taken to afford you the kind of support and advice that
clearly was lacking early on in your case?
(Mrs Hicks) I think there needs to be a marrying of
the two. I found that it was very rare that information was ever
offered to me within the health service, social services setting.
I had to seek it; I had to find it; I had to make appointments,
I had to badger people. It was quite common for people to come
and stand at my husband's bedside, discuss his case, ignore me
completely and walk on. That was common practice. I would have
to say, "Excuse me. Could you just tell me what is going
on?" Probably the starkest illustration would be having the
first case conference which discussed my husband's care package
when he was to be discharged. I am a primary school head teacher.
I was intending to return to work in the September following his
discharge. I met the social worker five minutes before the case
conference for the first time. We discussed his care, the package
that would happen, the community care that would need to be there
because he needs 24-hour supervision. They said they would cost
it, work out what it would be, present it to panel. I went away
traumatised. Having seen the effect that inadequate training could
bring on him, the thought of allowing people into my home who
may know nothing about brain injury, where there could be no guarantee
that there would be continuity of care, I could not offer that
to my children and my husband, so to me the only alternative was
to give up work. I believe that there are other government departments
that would quite like to retain head teachers and teachers at
the moment. I rang Headway in desperation. That was the first
time that somebody said to me, "What about the direct payment
scheme?" I asked, "What is the direct payment scheme?",
and they explained that it was a scheme where the costs were analysed,
we were then given the money and we became the employers of the
carers. Going back to social services, when I asked why this had
not been told to me, they said, "We thought it would be too
complex for you to manage". I do not know on what basis they
made that decision. I was incensed, so yes, if social services
are promoting independent living through the availability of direct
payments—and Essex social services in their document Equal
Lives say that they are doing that—they need to do it
effectively. The professionals who are in the health authority
need to be communicating with the people they are caring for.
14. Mr Wheeler, can I ask you about your views
on the relationship between the health service and social services
in your case? Clearly there are distinct guidelines and organisational
frameworks within which they operate. From your point of view
has that caused you any problems?
I am anxious to explore the organisational difficulties
that we as a Committee have picked up between the National Health
Service and the local authority social services, two different
frameworks. One of the themes of evidence that has come through
loud and clear is the need for some case manager, some co-ordinator,
some key person, who understands exactly what Mrs Hicks has just
described, who has got insight into the circumstances that you
have faced. What I am anxious to work out is where that person
is best placed, or are we talking about two different people in
local authority or in the health authority or what?
(Mr Wheeler) Angela Hicks described a great deal of
the problems that were relevant to myself. If it had not been
for Headway and my parents and my brother I do not think I would
have gone anywhere because I was not well enough. The first year
I was not well enough to do anything. My memory loss was terrible
and I was not well enough to appreciate the seriousness of the
accident. It was all down to Headway, my parents and my brother.
Then later on, when I did realise and I did return to work, I
had to take medical retirement for psychological reasons. My back-up
support was non-existent. Without their help I do not really know
where I would have been. I think I would have had a lot of difficulty.
I think it would have been impossible because it took me a long
time to recognise the seriousness of my accident and it was through
the help of Headway, head injuries rehabilitation and later on
Rehab after I took medical retirement, that I was able to cope.
Mrs Gordon
15. Mrs Hicks, your husband is lucky that he
had your support to fight for him and Mr Wheeler that he had his
family to support him and help him through the treatment system.
What do you think happens to people who do not have that support
or are not articulate enough to be able to work their way through
the system?
(Mrs Hicks) I was devastated on the day that my husband
left the general hospital. He had been sharing a bay for three
months with an elderly gentleman who was very cantankerous and
very difficult with the staff; he kept forgetting things like
his phone number. His family kept shouting at him and saying,
"For goodness' sake, you have lived here for long enough.
Can't you remember your number?" On the day that we left
after three months I discovered that he had had a blood clot removed
and he had suffered a head injury. It was very apparent that neither
the nursing staff nor his family had any understanding that how
he was behaving was probably largely due to his head injury. They
said, "He has always been grumpy", but this was different.
I still think about him now. I wonder what has happened to him.
I think that if the family are not supported and they believe
some of the things they are told, which I did not, then people
have their lives wrecked. I do not think they have the ability
to go anywhere. I think also, reading further, you are then looking
at people who are likely to suffer in other ways in terms of turning
to crime, turning to other difficult paths because they do not
have the support, because they do not understand their problem,
because the family do not understand their problem. There are
some families who either cannot or do not know how to fight. My
husband and Peter are lucky because they have families that are
strong.
16. How did you hear about Headway?
(Mrs Hicks) I saw the poster on the day of my husband's
accident and felt relieved that that would not ever involve us.
After a week I realised I needed information and there was a poster
in the ward and I went and got the number and I rang and that
was the beginning of tremendous support in terms of reading material,
help lines, professional counselling, art therapy workshops for
my children, advice with solicitors and seeking compensation,
knowing what questions it was you needed to ask. If you do not
know what you need to ask you are stuck. That was the guiding
light from there.
Dr Stoate
17. Ms Garber, can you tell me what particular
problems there are that social workers face in the management
of head injury patients?
(Ms Garber) Yes. I had this question in advance and
what I did was to ask some of my colleagues because I am part
of a national group, a brain injury social work group. From my
own experience and from theirs the points that they would want
to put to you would be that it is an extremely complex disability,
as we can see not understood even by health professionals who
deal with it on a regular basis sometimes. It takes a lot of time
to go through the right process with the family. If you are working
with a client who has had a brain injury you can see family need
but maybe your remit is not to deal with that family need. Nevertheless
that is an impact on you as a worker. Social services departments
tend to have very limited understanding of brain injury. There
are very good practice pockets around the country but by and large
it is not a well understood disability in social services. There
is very limited training money within social services budgets.
You can appreciate that their priorities are elsewhere, so to
skill up the social services force to deal correctly with this
issue is problematic. There is very limited management understanding.
You will appreciate that there will be hospital social workers
and community social workers who will be attempting to tackle
individual problems but their line manager will not understand
the difficulties of the work that they are doing. That is a major
issue. Supervision is likely to be appropriately given and perhaps
to some other areas of social work. There is also likely to be
limited community resources that are specific for brain injured
persons. Therefore you are tailoring what resources there are
to the needs of your client. There is particularly good work done
by some of the clinicians in other areas of the world. I would
draw your attention to Barry Willer who is a psychologist in Canada
who talks about the "whatever it takes" method, meaning
that you use the local support, you use the personal support networks
and community support networks. That is a very good theoretical
proposition but it takes a lot of time to do that. If you have
somebody whose disability is hidden, who walks into a community
group, behaves badly and perhaps does not turn up on time, they
are going to get themselves excluded. You as the worker have to
make sure that resource works for your client and that takes time.
Social services are under great pressure at the moment. Their
workers are always stretched so there is rarely the time to give
to those cases.
18. So social services are not really very good
at all at handling this problem?
(Ms Garber) I think so, but not in every case. I would
say that there are authorities where there are pockets of extremely
good practice but it is not widespread.
Chairman
19. What is that good practice?
(Ms Garber) That good practice says that there will
be a social work presence in a hospital at an early stage that
understands the longer term nature of the problem, that there
will be some understanding of brain injury as a specific disability
and not putting it into a box it does not fit into. Social services
tend to look at their longer term services in terms of mental
health, physical disability and learning disability, and people
with a brain injury may have needs that could be serviced by the
skills of any one of those but it does not quite fit into any
of those boxes. If you plonk it into one or the other you are
going to get boundary difficulties. Where you can have permeable
boundaries, where you can have services that are open to a client
who may not absolutely fit into your box, that is going to be
the better service, where you can give your care managers or social
workers, whichever they are designated, time enough to do brain
injury social work well. It does happen around the country but
it is not a priority in local authority services.
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