Examination of witnesses (Questions 93
- 109)
THURSDAY 15 MARCH 2001
YVETTE COOPER,
DR SHEILA
ADAM and MS
JUDY SANDERSON
Chairman
93. Minister, can I welcome you and your colleagues
and thank you for coming along this morning because I appreciate
this is not entirely your area of specialty, so we will take that
into account in respect of your answers.
(Yvette Cooper) Thank you. I have with me Dr Sheila
Adam, Deputy Chief Medical Officer, and Judy Sanderson, who is
the Team leader responsible for neurological services whom I have
also asked to sit at the table in case there are any detailed
questions anybody has, if that is alright.
94. That is very helpful. Can I begin by thanking
you for the written evidence you have given to this inquiry, which
is helpful, and pick up the point you have just made about who
does what in the Department. One of the problems that we have
had in respect of this area has been the witnesses who have said
to us, "We do not slot into any neat category and frequently
we cover a number of categories and fall between several stools."
Would you or one of your colleagues describe how this area is
handled within the Department itself at this point in time?
(Yvette Cooper) I will say a couple of things and
then hand over to colleagues to describe departmental structures.
This is something which affects a lot of conditions. Inevitably
any condition is affected by lots of different, sometimes fragmented
services, and one of the challenges in any service, whether it
is about the NHS provider side providing services or whether it
is the Department of Health policy implementation side, exactly
the same questions and tensions arise for many different conditions
and problems. I think that is one of the things that we have tried
to pick up in our approach to national service frameworks, which
is to take that comprehensive approach and draw together all of
the different elements, whether it is about prevention, whether
it is about social services, whether it is about acute care, or
whether it is about rehabilitation and to do that on the policy-making
side but also on the service delivery side as well. We would recognise
that in a lot of these areas (this area as much as any) there
are these kind of difficulties and that is exactly the kind of
approach which the NSF is supposed to address and I know we will
come on to that later. I do not know who wants to discuss the
departmental structures.
(Dr Adam) Obviously this is an area that crosses the
three main business groups in the Department of Health. The NHS
Executive is taking the lead on health services for people with
head injury both in the acute phase and during rehabilitation
and continuing care which requires a clinical input. Obviously
social services also play a key role in the rehabilitation and
longer-term care and they are, as you know, within the Social
Care Group of the Department. We are also concerned to integrate
thinking on prevention of head injury and the lead for that sits
within the Public Health Group. I think the other two bits of
the Department to mention are the regional offices of the NHS
and of the social care regions because obviously in terms of implementation
and performance monitoring and management they play the lead roles.
So I think it is an area that genuinely needs to be reflected
in each of the three business groups in headquarters and in the
two sets of regional offices.
95. I ask you, in looking at how you handle
this area, what kind of figures do you have on the number of head
injured people there are in England? We would be interested in
your comments on the collection of data by different elements
within the Department, obviously there is the health side and
there is the social services side who are dealing with different
parts of this problem. Also, how do you offer definitions, because
there are, as we have been reminded of on several occasions this
morning, marked distinctions within the term "head injury"
or "brain injury", or whatever that clearly do cause
difficulties sometimes. I was very interested in Headway's evidence
to the Committee, which I think you may have seen, where they
refer to a Parliamentary answer given—I do not think it
was by yourself, Minister—on 5th February, where they say
a written answer to a Parliamentary question on support erroneously
quoted statistics which referred only to traumatic brain injury.
The definitions are obviously causing people some problems at
a grass roots level and, clearly, there may be some confusion
within the Department at a national level. Can you tell us a bit
about how you do define it? How is it recorded and how do you
pick it up in developing your policy at a national level? To develop
that you need to know how many people you are dealing with.
(Yvette Cooper) The figures that we have and are collected
and we have submitted to the Committee in Annex A of the memorandum
that we sent. That sets out the finished consultant episodes via
the main diagnosis in NHS hospitals, and those are the figures
that are collected. We would accept that there are difficulties
with the figures and there are difficulties with the way in which
they are collected or the diagnosis is made at the time. There
is not an easy solution to this. However, the National Service
Framework for long-term neurological conditions will cover the
issues around head injury. One of the things that may be appropriate
for early work, as part of the National Service Framework, may
be to assess the data currently collected, and to look at what
improvements might be made or what research might be needed. I
do not know if anybody else wants to add anything on the way the
figures are collected at the moment.
(Dr Adam) If I can add a concern about the difficulties
measuring both the severity of injury and measuring the outcome
and trying to make a connection between the severity and the ultimate
outcome and the interventions that have been made. We do find
that extremely difficult at the moment. As the Minister has said,
this should be one of the focal points in the development of the
information strategy to underpin the National Service Framework.
96. If I can look at it in practical terms at
a local level, I mentioned in the first session that I was struck
by the written evidence from one witness, that you may have seen,
who talked about one of the problems of the head injury at a local
level is being dealt with by local authorities and the community
care provisions slot into certain categories, they went into detail
about mental health and learning and physical disabilities. There
problems are frequently in more than one of these categories,
will the framework offer any clarification as to how, perhaps,
at a local level a community care plan may link and bring in additional
criteria that will enable such people who do feel they do not
fit in anywhere to have their needs addressed more coherently
than is happening at the moment?
(Yvette Cooper) There is an opportunity for the National
Service Framework. The position at the moment is that we are at
a very early stage in terms of scoping it. Decisions have not
been taken about the scope that it should have and about an external
reference group to take the work forward. There is a huge amount
still to do in terms of deciding what should be in it. Certainly
that would be the intention behind the National Service Frameworks.
I think what has been the strength of the previous National Service
Framework, which is certainly something that we would expect to
apply in this area as well, is the fact that they are comprehensive
including the potential for and prevention following a patient's
journey through all of the different aspects of their experience,
including involvement of acute healthcare and social services,
as well as community care. Drawing all of those things together
gives us the opportunity to address exactly the kinds of things
that you are talking about. Obviously it is difficult for me at
this stage to say exactly how they might be able to do that, that
would certainly be the intention.
97. It is fair to say that we have looked at
mental health and were very impressed by the National Service
Framework's impact there, the only slight problem was that it
was very aspirational and sometimes it missed some of the practical
difficulties that people face at a local level. That is the area
I am concerned with on this particular point. There has been some
fairly important reports in relation to the rehabilitation of
people, for example Welsh Affairs Committee produced a report
and the Warwick Study. What has actually happened since these
reports, because I cannot see that there has been a great deal
of follow-up from the Department? Certainly witnesses indicate
that change has happened as a consequence of some of the points.
(Yvette Cooper) The impact of the Welsh Affairs Committee
Report on Services in England has been very limited indeed on
some of the issues. I cannot answer for the way in which they
have been picked up in Wales. I think that was not a central issue
for English services. The Warwick study was published, circulated
and the best practice from Warwick study was circulated to the
NHS. I understand that some of most important issues around it,
for example case managers for rehabilitation, are being picked
up. Obviously what we are not aware of is quite how widely it
has been implemented, and that is one of the things that the NSF
needs to follow up. In the wake of the Warwick work there has
been other work, which is starting to come into play. There was
the Safe Neurosurgery 2000 Report and the Glasgow Report, which
are now being looked at in detail by the joint working group that
was set up in the Autumn between the Regional Specialised Services
Commissioning groups of the NSS and the Society of British Neurological
Surgeons. What that is looking at, is how the key messages from
those two reports might be implemented, including the implications
for service configuration and networks, and so on. I would envisage
a lot of their work feeding into the NSF, but they have already
begun working, so there may be things there that could be picked
up in advance of the NSF framework. In addition to that there
are the NICE guidelines for the assessment and management of acute
head injury, recently commissioned and currently be scoped. I
think I would accept that there is a huge amount to do, following
the publication of the Warwick Report. In the end, because the
Warwick Report does not provide all of the answers we need, there
is a lot more policy work that still needs to be done before implementation
can take place.
Dr Stoate
98. I would like to pick up on the NICE guidelines,
can I ask for some clarification, from the evidence we have received
it is not explicit as to whether the NICE guidelines include rehabilitation
or not, can you help us with that one?
(Yvette Cooper) The answer is no if you are talking
about long scale rehabilitation. The extent to which you are talking
about the way in which rehabilitation needs to be started straightaway
then there may be scope to look at it. The focus of the NICE clinical
guidelines is the clinical assessment and management of head injury.
The decision not to include rehabilitation was taken for two reasons.
Firstly the evidence base is much stronger for the immediate clinical
management of head injury than for longer term rehabilitation.
Secondly, because rehabilitation must be tailored to the needs
of each individual, it just may not lend itself to NICE clinical
guidelines in the same way. Certainly the intention has been for
the NICE guidelines to address immediate care, and for the National
Service Framework to pick up the detailed work around rehabilitation.
99. Moving on to the National Service Framework,
which is something that you touched upon, I appreciate it is in
its early stage, so you may not be able to give me specifics,
the evidence that we have been given says, "We would expect
it to cover rehabilitation", but it is very unclear about
that. Can you be a bit more explicit about that?
(Yvette Cooper) We have worded it in those terms because,
until we have set up our external reference group and they have
begun their discussions, it would be wrong to try and answer every
question about what it might include and what it might not include.
Our intention would be that it has to include rehabilitation as
well. All of the previous National Service Frameworks have looked
at everything from prevention, acute care rehabilitation, right
through a patient's journey. The intention would be for rehabilitation
to be included, with the proviso that we still have to agree the
precise scope of the NSF. Nevertheless, the intention of ministers
is that head injury rehabilitation should be included.
100. I am very, very pleased to hear that, obviously
that is a great concern of this Committee because rehabilitation
is really what we are looking at the most. You mentioned the Royal
College of Surgeons before, but of course surgeons do not deal
with rehabilitation. This is an issue we are keen to pin down.
You are prepared to say that you are expecting this to happen
and you want to see it.
(Yvette Cooper) Yes, I expect and want to see the
rehabilitation of head injury in the NSF.
101. Moving on about the NSF, it is already
stated that it will not be ready until 2005. What will the Government
do about rehabilitation between now and then, that is obviously
a considerable way off, and is there anything you are doing between
now and then to help rehabilitation services?
(Yvette Cooper) It may be that some of the work that
is commissioned as part of the NSF may lead to more rapid progress.
There may be areas around research that may be important that
will need to take place and may actually provide for things that
could happen more quickly. There is also some guidance on rehabilitation
and employment that was issued in 1999, joint guidance between
the Department of Health, the Department for Education and Employment
and the voluntary sector, which was about interagency partnerships
around this rehabilitation and education and helping people back
into work, all those kinds of areas as well. That guidance has
also gone out. What we are now working on is a pilot on job retention
and rehabilitation with the DfEE and the DSS. That work is also
under way at the moment. I think that will provide us with some
scope for progress in the short-term as well.
(Dr Adam) In a slightly different context, the context
of intermediate care, as you will know rehabilitation is a major
component of that, with a view to helping people move through
hospital and possibly preventing the need for long-term institutional
care. Although it is not linked specifically to head injury, we
have been very clear that intermediate care, although primarily
focused on older people, will be there for each service who can
benefit from it. In terms of taking forward the general rehabilitation
agenda over the next two or three years there will be investment
through intermedicate care, and I expect to see some progress.
Obviously, the second point, this is very staff dependent, it
is another of those areas where we are looking at the work force
and capacity building. Just to make the link back to the NSH Plan,
where there are proposals to increase the number of therapists
between now and 2004, and we know that they play a key role in
any rehabilitation programme. That is the background context while
we do the more detailed work on neurological conditions and head
injury in the NSF.
102. What we have heard from our previous witnesses
was that the services currently in rehabilitation are very patchy
across the county. There are some examples of excellent practice
and some examples of where little seems to have been, that is
obviously of great concern to us. One of the witnesses said earlier,
if the government raised the priority of that, and the government
was pushing from the centre it might concentrate chief executives
minds more in terms of providing those services. We also heard
from Dr Turner-Stoke who felt that the evidence of rehabilitation
was now extremely good, despite the Warwick Study that you mentioned.
Given that the evidence is now getting much stronger and given
that our experts tell us that more emphasis from Government would
raise the profile, is there anything you think that the Government
should be doing or could be doing to try and raise that profile?
(Yvette Cooper) By setting out our choice of subjects
for the NSF that is a sign that the Government are starting to
raise the profile around these issues. You will be aware that
the NSFs are major pieces of work in terms of policy development
and implementation and there are also other major pieces of policy
being implemented across the NHS. We have quite been quite careful
to take each NSF one stage at a time and not to try and do NSF
on absolutely every single subject under the sun, all at once,
because we cannot cope in terms of developing the policy in the
right way, but also the NHS will struggle to implement all of
these changes, and quite substantial changes in other service
development, all at the same time. By focusing on cancer, heart
disease and mental health over the first few years those are very
much prioritised in the minds of chief executives and the minds
of the NHS across the board. The next stage of the NSF programme
will focus on renal services, health services for children and
on long-term neurological conditions. That is exactly what we
are doing and we would expect increasing interest in the NHS across
the board as the process of the NSF takes place and as the work
is done. We will need to draw on what is happening right across
the NHS and draw people into the process of development over the
next few years. It will not simply be that we tell people at the
end of the process in four years' time or five years' time what
will happen, we will need to draw people into the process of development
in the same way we did with the NHS Plan as we go along. That
does provide us with the opportunity to raise the profile of rehabilitation
across the board.
103. That is very encouraging and it is very
good news to hear that the government has plans to make a big
difference. Can you outline what the current guidelines are for
health authorities, because there is a very patchy take-up at
the moment? What is currently being told to them?
(Dr Adam) I think probably the best answer is the
detailed guidance which has just gone out on intermediate care,
which includes a section on rehabilitation. That is certainly
the most recent statement we have made, and the most comprehensive.
It is also, as you know, linked to investment. In the minds of
your chief executives that is going to be quite influential. We
are just in the process of looking at the proposals for service
development for the coming financial year 2001/2002 and we are
certainly seeing rehabilitation within intermediate care playing
through.
John Austin
104. Whilst I welcome the comments that Dr Adam
made about intermediate care and welcome the emphasis that the
Government puts on the expansion of that facility, by and large
that has been seen as and area, predominantly, in terms of the
care of elderly people, is it necessarily the right sort of focus
or location for the young person who has acquired their brain
injury at a young age in a road traffic accident?
(Dr Adam) We have certainly been clear that we do
see older people as the prime service users but we have also been
very clear that, where the services are appropriate, they should
be available to a wider group of people. I would not want to see
a 25 year old being looked after among a group of very elderly,
very frail people; that would not be appropriate. But the types
of services that we will see developing may have something to
offer younger people too. Obviously, it is important when we talk
about head injury to be clear that we are not just talking about
the generic rehabilitation services but we are also focusing on
the more specialist neuro rehabilitation services, part of neuro
science services. Thinking on these will really be developed through
the NSF, and in the work that is now going on in the joint working
group, looking at the early implementation of the two reports
that the Minister mentioned earlier. What we are trying to do
is knit together local service development over the next few years
with the thinking that we will be taking forward in the NSF to
look at how we can build better services for the particular group
of people that we are talking about this morning.
Chairman
105. One of the points that was raised in the
earlier session was not so much John's point about inappropriate
placement in the care sector but inappropriate placement after
tertiary provision, within say general wards or wards, as in one
instance, full of older people where a younger person with this
kind of problem is really inappropriately placed. Is that a concern
you have about the practicalities at the present time?
(Dr Adam) It is a concern that I hear often when I
talk to people about services for people with brain injury. For
me it would be one of the issues that I really want the NSF to
focus on. Without jumping ahead I am sure we will want a group
of people looking specifically at services for people with brain
injury. Within that I think we want to look very carefully at
what the present problems are, what the service gaps are, and
what we need to do to begin to address those. I think we are all
conscious that this is a service that will benefit from a thorough
look across prevention through acute management to rehabilitation
and care, and I do think the NSF is going to give us the opportunity
to do that.
106. The Minister mentioned the concept of the
case manager and the idea of a co-ordinater from whatever professional
background has come over loud and clear this morning as a clear
area of need. Where that person has existed in a positive way
it has been extremely helpful to families and to patients. Looking
at the current structure where do you view the most appropriate
professional role to undertake that process? We have heard of
various people doing the job but obviously in many areas nobody
is doing the job and it is meaning that patients and their families
have not got that key guidance and support at a very difficult
time.
(Miss Sanderson) There is guidance out there insofar
as the Warwick Report summary is out there which concentrates
entirely on good practice and the findings of the Warwick Report.
The Warwick Report was a best seller within the NHS and Warwick
University had a lot of demand for the full reports so that people
could read it to learn the lessons and apply them to services.
(Dr Adam) Certainly the learning from a number of
areas where case management has been proposed has shown that it
is an approach that works well for different groups of people
with complex and continuing needs. To some extent it is more about
personal attributes and skills than any particular professional
background. Obviously therapy staff, nursing staff, social services
staff, would all be suitable in theory, but we would be looking
for the right kind of person who wanted to do this work as well
as making sure that they had some core clinical and practice skills
that they would need to do assessments, plan care and monitor
progress. We would very much support that approach, and I think
the pro-active management of rehabilitation and also handling
transitions, for me, comes very clearly out of the Warwick Report.
People are vulnerable when they move from one team to another
or from one setting to another. We need to look at better ways
of handling case management from one team to another team, or
from one setting to another setting.
(Miss Sanderson) Warwick did not identify a specific
staff group as being the perfect case manager. They saw different
people in the role who came from different professional backgrounds.
It was an interest in patients and patients' families and patient
rehabilitation that made a successful case manager rather than
their background.
107. What interested me in particular was the
role of the hospital social worker, which is a key element here
because clearly they are employed by the local authority but working
within a hospital situation. If a person is leaving the hospital
sector to live in the community they would be ideally placed to
ensure that resources were brought in to support that person in
their own home and also to address this problem of community care
plans specifically looking at the particular needs of this group
of people.
(Miss Sanderson) We are looking really at a combination
of two factors here. People need rehabilitation to the best state
of functioning they possibly can, but once someone has been rehabilitated
and goes back home they then need the support within the home.
This support should look to give a good quality of life, to try
to minimise some of the deficits people suffer after brain injury,
and to relieve some of the tensions that are within the home.
A brain-injured person may have suffered personalty change and
once out of hospital families may get what appears to be a stranger
coming home. This does not seem to be the person you were married
to before or your son or your daughter—and that does create
a lot of problems which do need support.
108. The message we are getting is, yes, the
acute phase is handled well, the tertiary side is handled well,
but the response and what happens after that is where people are
saying—
(Miss Sanderson) And the link between the two.
Chairman:—We need to do better.
Mr Burns
109. Notwithstanding the fact that the Warwick
Report was a best seller in the NHS, how confident are you that
it is not a flawed document?
(Miss Sanderson) It was peer reviewed to make sure
it was methodologically sound. It did look at a number of new
areas as far as research into rehabilitation was concerned. We
have no evidence to show that it is a flawed document. What it
did not do was find the evidence to support the primary purpose
it was set up to look at, which was the association between the
amount of input of rehabilitation a patient receives and the final
outcomes.
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