Examination of witnesses (Questions 54
- 79)
THURSDAY 15 MARCH 2001
DR LYNNE
TURNER-STOKES,
MR JOHN
POPE, DR
KEITH ANDREWS
and DR BRIAN
MOFFIT
Chairman
54. Can I welcome our second group of witnesses.
Again thank you for being willing to come and give evidence in
this brief inquiry. Can I begin by asking you each to briefly
introduce yourselves.
(Dr Turner-Stokes) I am Lynne Turner-Stokes. I am
a consultant in rehabilitation medicine and I am Director of the
Regional Rehabilitation Unit at North West London Hospitals Trust.
(Mr Pope) I am John Pope. I am the Chief Executive
of North West London Hospitals. I am responsible for the unit
that Dr Stokes has talked about.
(Dr Moffit) Brian Moffit, consultant neurologist working
in brain injury. I am working in the independent sector in St
Andrews Hospital.
(Dr Andrews) Keith Andrews. I am the Medical and Research
Director at the Royal Hospital for Neuro-disability in Putney.
I also wear other hats as the Chairman of the Neuro Rehabilitation
Sub Group for the London Specialist Commissioning Group. I have
also been both the Secretary and Chairman of the United Kingdom
Acquired Brain Injury Forum.
55. Thank you very much. I think you were all
present for the earlier session so you have a broad idea of the
areas that we are exploring, particularly the experiences of our
two witnesses who have faced problems directly in their own personal
circumstances.
(Dr Turner-Stokes) Yes.
56. Can I ask you, picking up the points that
were raised by the previous witnesses, what your views are on
the best organisational framework for this area of care provision?
I am particularly looking at the fact that we now have a radically
changing scene in primary care and there may be different models
operating in different areas. We mentioned care trusts and also
we obviously recognise certain parts of the country—before
the Committee began we were discussing the position in the Isle
of Wight, which Peter Brand represents—obviously are some
distance from specialised care. So I would be interested in how
you feel we may address improving the organisational framework
at the present time?
(Dr Turner-Stokes) I think in terms of organisation,
one has to realise that there is a huge variety of severity of
brain injury from small volume, very intensive need, down to the
larger numbers of very mild injuries in medical terms which nevertheless
have very significant cognitive effects and impacts on the social
and family set up.
57. I appreciate that.
(Dr Turner-Stokes) Therefore, I think what you need
to do is think not just in terms of a district or an area with
boundaries that people have to then move across but you have to
think of networks. There may be regional centres, tertiary centres
for people with particularly complex problems but then equally
district specialist services with specialist trained therapists,
rehab nurses, consultants in each district that can take either
the less severe or else people who have progressed from the tertiary
centres. Then down to the community in making sure there are people
in the community, not necessarily now so much led by doctor specialists
in rehab but neuro-psychologists who support the family and community
networks and that really is down often at the GP level. I think
the GPs often do not have a lot of experience themselves in managing
head injuries nor a lot of time but at PCT level clearly they
can put in the services and maybe the community teams can be based
perhaps around the PCTs.
58. What about from your own experience? We
have talked about the idea of a case manager, we have talked about
a key person who flows between the hospital and the community.
Certainly mention was made in the earlier session about the role
of the hospital social worker. In your own experience and in your
own work situation, who covers that role currently, is it addressed
in any way?
(Dr Turner-Stokes) In our own unit we have a key worker
for each patient and somebody who hopefully will be the continuous
advocate for that patient throughout the time that they are on
the unit.
59. What position is that person: a nurse?
(Dr Turner-Stokes) It will be any member of the team.
It is usually a therapist, it may be a nurse, sometimes it is
actually a doctor if that is appropriate. That is just the time
that they are on the unit and possibly following a little bit
after they go home. Where the failure is is at the point that
we then pass on to one of the other services, even if it is a
good community team. We have to hand over everything to that next
person and so a lot of the continuity is gone. I think the carers
often feel that in a way more acutely than the patient. I think
there does need to be somebody who is following that patient all
the way through from their acute injury and out and a constant
source but obviously within each team I think it is important
also that in each service they have somebody who is the advocate
for the patient, particularly bearing in mind that you may be
having meetings, ward rounds and so on, in a medical setting where
the patient is not actually physically present. There needs to
be somebody who is an advocate for the patient and who knows what
they want perhaps in the rest of the team discussions.
60. Has anyone else any thoughts on this general
area, both the structure question and the issue of this key person
who will be the focal point?
(Dr Andrews) I think there are probably three levels.
I think there are some very good practices around. One is the
one at Queen's Square which Richard Greenwood runs which takes
people certainly from one catchment area, straight from the neuro-surgical
units into a unit where they are only there for six weeks but
during that time a whole assessment can take place, whether they
can go home, whether they need to go to a district rehabilitation,
regional rehabilitation or one of the super specialist rehabilitation
units. I think the second very good model of care is actually
the one which Lynne Turner-Stokes herself runs which is really
a co-ordination not only from the regional centre but works with
the district services and links very closely backwards and forwards.
I think the third element is one which Riverside Health Authority
runs with a co-ordinator for people who do have brain injury or
severe disabilities and work in negotiation with social service
departments.
61. Who is that co-ordinator?
(Dr Andrews) That actually is an occupational therapist
by background but it could be just about any profession.
62. Sure.
(Dr Andrews) The specialist commissioning group for
London actually has taken a great interest in this and one of
the things from the recommendations which are coming forward is
that there needs to be a co-ordinator to get people through from
the acute services into the most appropriate service. Once you
get somebody working people through that system, they need a budget
to be able to do that, you can then hand over eventually to a
case manager who will then take people through the next stage
of the system back into the community. I think one of the biggest
problems is this relationship between health and social service
departments and unless that is co-ordinated much more effectively
then really this is where all the barriers really build up. A
lot of that is tied around who is taking responsibility for the
funding and understandably everybody is protecting their own little
budget.
63. As a Committee we have put forward various
solutions on this issue which have not so far been taken up by
the Government. We remain hopeful they may come round to our way
of thinking at some point. The role of hospital social workers
strikes me as being very important. Obviously the hospital social
worker is based in the hospital but actually employed by the local
authority. If you are looking at organising care packages that
will be funded primarily by the local authority, are they not
in a position to carry out that function effectively by virtue
of their relationship with other organisations? Are you saying
that is not working or we need to replicate that or put forward
alternative figures who will operate between the two structures?
(Dr Andrews) Our hospital is a charity and therefore
we have been able to take a little bit more of an innovative approach
to this. In fact we decided at the end of the day although patients
are entitled to their own social worker that we would actually
appoint social workers ourselves largely because some of the problems
which Jenny pointed out this morning are that social workers do
not have the expertise in this area. Our social workers develop
that expertise and then can support the social service social
worker in the management of those people and they turn to our
social workers for that advice. That might be a model that you
need the adviser to help people through the system in what to
do to give them expertise.
64. Do any of our other witnesses want to add
anything?
(Mr Pope) Perhaps just to comment on parallels. We
are looking for solutions today in some ways about how to move
things forward. If you look at what has happened around delayed
discharges generally in hospitals around winter there has been
a lot better connection between social services and health, and
I certainly feel that as a Chief Executive. There has been a lot
more interaction with the Director of Social Services and heads.
I think that has in some ways been forced but it has worked a
lot better. I think you can see it change, despite the organisational
barriers, people recognising the needs of both sectors. It is
the question of resources which causes that block. I think the
other thing is that we are hearing a lot about good practice and
you will see much of what is being pushed within the NHS, which
you are well aware of, is that sharing of good practice and making
it available and people copying rather than reinventing the wheel.
I guess you have a lot of that in the evidence that you have received.
It is one of the things that I would encourage and support from
my perspective. That is the way forward, it is about the network
using voluntary sector, health, social services but getting people
together in groups to encourage that and perhaps the vehicle for
that is through national guideline frameworks which give people
a degree of flexibility but say "These are the keys that
make things work" and "You can see it working in X,
Y or Z." I think those are the things that would perhaps
help break down some of those barriers and build on some very
good practices. There will be an issue about resources inevitably.
65. Do you see from your own point of view any
models that operate? You mentioned there are other areas where
similar co-ordination issues are being addressed. It strikes me
looking at the community in certain areas that you have a model
there where the midwife follows through the patient right the
way through in to the place and back out.
(Mr Pope) Yes.
66. Are there other models that you see which
might be replicated in a way that overcomes this problem of continuity,
of leaving people without anything, without acute care, without
tertiary care, dumped into some sort of ward where it is inappropriate
and they might as well be back home?
(Mr Pope) I would not say necessarily a particular
example like that but you will be aware probably of the cancer
collaborative work which is going on which is bringing all the
parties together to realise what actually goes on across the stages.
I think it has been a revelation to people who thought they had
done a good job, thought they had got the patient into the right
setting and you have often got the patient or the carer saying
this was lousy. I think using those kinds of techniques firstly
shows people what the connections are and then show the continuity.
It is either about an individual or having common information
in processes which often are not shared. The routine things you
have when you enter any of the sectors are "What is your
name? What is the problem?". You repeat all the same things
again. There is a shared care record which does apply in maternity
and is something that moves around with the patient. That is empowering
for the patient or the carer and certainly it helps professionals.
I think there are some examples but maybe other people would add
to that.
67. Dr Moffit, have you anything to add?
(Dr Moffit) A number of patients who have come into
the independent sector to niche providers come basically from
mental health services. There is certainly a good model that exists
there through the Care Programme approach where there are key
workers identified for individual patients and really it is the
responsibility of that key worker, shortly to be renamed co-ordinator,
to take on that specific function of co-ordination of care through
the different phases, helping the individual to identify appropriate
placement in the first instance, maintaining the linkage with
the placement during the period the individual is out of area
and helping to facilitate their return back into their home area.
It is helpful too because sometimes it assists in the crossing
of the boundaries that have been mentioned in relation to health
and social services because the mental health service often has
quite good bridging across those bodies.
Mr Austin
68. I want to go on to rehabilitation but can
I just go back to Dr Andrews and the London Commissioning Group.
The point you made, Dr Andrews, was that individual GPs are unlikely
to develop skills or have the knowledge of the Commissioning Group's
services. I think we heard also from Mr Curley from Headway the
kind of problems the PCC might be faced with if a bus load of
young people were involved in a road traffic accident.
(Dr Andrews) Yes.
69. Does the Commissioning Group that you are
involved in also involve the pooling of funding? Did the Commissioning
Group come together voluntarily?
(Dr Andrews) It was the Commissioning Group who decided
that one of the big issues was the need to look at neuro-sciences
generally. For the Commission some of the more difficult areas,
the very expensive areas, are largely the low volume but high
cost areas. Therefore we have tried to find solutions within the
present system. The problem with the PCTs, the difficulty is that
the care of patients is the responsibility of the general practitioner
who we would not want to take that responsibility away from, that
is where the care should be. On the other hand, if they are going
to see one patient every ten years as an individual general practitioner
they cannot get the expertise and in fact the NHS Executive has
already looked at the commissioning of neurological services within
general practice and also feels that there is this big problem
of the very rare conditions and how you get round the lack of
expertise and the risk of a large number of people having that
sudden problem all at once and therefore you need to balance out
the risk factor. Therefore I think we are now beginning to look
at the possibility of top slicing some of that money or at least
PCTs joining together as a commissioning group to look after this
group of people.
70. Can I now turn to the provision of rehabilitation
services. Part of the evidence which has been put before us is
the Warwick Study and we were talking about the need for co-ordination
of services but resources are clearly an issue as well. On the
basis of the Warwick Study is there sufficient evidence to warrant
putting more money into rehab services? What has been put to us
in part of the evidence was the study failed to establish a "substantially
significant link" between the amount of rehabilitation input
and patient outcomes. The other point which is made is the concentration
of resources. Ten per cent of the most seriously injured persons
consume 90 per cent of the resources. Maybe there is an argument
for saying more effective use of the resources might go on some
of those less damaged. How do you respond to that?
(Dr Turner-Stokes) I do not want to be rude and offend
anybody who was involved with the Warwick Study but I have to
say it was a very poorly designed study in very many ways.
71. I think it is important if you feel that
that we get that on the record.
(Dr Turner-Stokes) Perhaps I ought to just say why
I think it was a poorly designed study. If you take a mixed bag
of head injuries, anything from two months to ten years down the
line, and you collect some arbitrary measures like sometimes GCS
or sometimes post-traumatic amnesia and sometimes you do not collect
those at all because the information is not available, and you
collect a certain amount of information on records of therapy
but probably not a lot and none of that in relation to actually
what the patient might need, and you may collect those measures
on three different occasions bearing no relationship to the time
of the injury—and I hope I am not misquoting any of this
anywhere—and you bung it in a database and you see what
comes out then the answer is not a lot. Really one has to say
this is really where research was in stroke in the 1970s where
there were quite a lot of published studies that demonstrated
that rehabilitation to stroke was not effective. What we know
is subsequently when we have done better, properly, systematically
organised studies, analyses, we show that it does work when we
sort out all those difficulties. Since the Warwick Study started
there have been some properly designed studies, in particular
the one published by Derek Wade and the one which is about to
be published, I think, by Richard Greenwood, which really have
shown benefit and they are really proper randomised controlled
trials. I think the weight of evidence presented by the Warwick
Study is not strong. I am sure you are aware we have reviewed
critically the evidence that there is and there is good evidence.
It is in Clinical Rehabilitation by the way, I will give
you a copy if you have not got it. There is good evidence that
post acute rehab can both reduce length of stay and increase functional
independence. There is evidence for cost effectiveness in randomised
controlled trials and evidence that more intensive therapy can
both reduce length of stay and produce net cost savings. I would
say that I think if we can take the lead from stroke research
in particular, where we now know there is good evidence that rehabilitation
in another condition that gives you severe complex neurological
disability, co-ordinated rehabilitation is an effective way of
managing that, then I would say that looking at future evidence
in head injury you would have to take the null hypothesis that
turns it the other way round and says "We have to show that
it does not work in head injury" because there is every reason
to suppose that it should. The final point that I would make with
regard to your point about putting all the money towards the severity
of the injury, we know there is a relationship between therapy
input and outcome. It is based on the fact that the more severe
your injury, the more disabled you are, the more complex you are,
then obviously you are going to need more rehabilitation input
but obviously your outcome is going to be poorer at the end of
the day. That is the danger when you separate out research findings
from what we know to be true in clinical practice and see it in
vacua, as it were. I think that you only have to look at patients
with very, very severe injuries who have spasticity, deformity,
immense distress and say "sorry you cannot have the rehab",
I think we are way past the time that we can do that ethically.
(Dr Andrews) Chairman, can I just make a comment on
that. I would not like to throw out the baby with the bath water.
In fact the study was an extremely difficult one. It took a very
difficult area of community rehabilitation at a time which the
report acknowledges community rehabilitation was just in its infancy.
It did not have protocols, it did not have guidelines, it did
not have methods of treatment. In fact it came up with quite a
bit of information which is helpful. One is it pointed out the
enormity of the problem of people in the community who have brain
injuries. It demonstrated that the physical problems improved
and the great difficulty was really the mental problems, the ones
of concentration, the ones of behaviour and that although there
was no change in memory there was a change in the strategy of
dealing with those memory problems. Therefore you were training
people how to overcome those. If you just measure what their memory
was like, it was bad, and did not change but the methods of dealing
with it did. I think they also emphasised, of course, the importance
of teams and good teams and well integrated teams have better
responses than poorly integrated teams. It demonstrated the great
benefit of a case manager. I think you have to take all of that
into account. The average amount of time spent on treating these
patients over 18 months was 64 hours-seven minutes a day. If you
take even the most intensive period, which was the first month
of intervention, that was still only seven hours-14 minutes a
day. Quite honestly if that was a drug trial and we were trying
to use minimal levels of the drug you would not get it through
an ethical committee. The fact that we managed to demonstrate
anything at all I think is amazing.
Dr Stoate
72. You will be aware that we are just about
to see the Minister so a quick question to all of you really that
is aside from all these resource issues, what do you think the
Government could be doing and should be doing to improve rehabilitation
for brain injured people? I do not know who wants to start off.
(Dr Turner-Stokes) Make it a priority. The way that
I see it, we have obviously talked about some of the things that
are missing, including resources and training and so on. I think
the other thing that is really missing, now that the centre is
being quite prescriptive about exactly what the priorities are—and
John has a list that he has got to work through—when I go
along and say "I want to develop more rehabilitation"
John says "Well, yes, but it is not actually in my priority
list and I have got to deliver on these and I have not got to
deliver on that, so come back next year" and so that goes
on. I think it is also about seeing that it really is a priority
and particularly because patients with severe head injury do block
beds in the acute hospitals so not only are they not being treated
properly and their families are not being managed properly but
they are actually sitting there blocking a bed and preventing
the chief executives meeting the targets that they do have to
deliver on. So there is good reason why it should be a priority
although possibly quite small in number.
73. Is that a Government issue or a local social
services issue? What I am trying to get at is what should the
Government as a Government be doing?
(Dr Turner-Stokes) I think it is a Government issue
because if the Government put it on the top priority for chief
executives for next year to make sure that they have got properly
co-ordinated rehabilitation services for acquired brain injury,
and I would put in the young strokes actually, I disagree slightly
with Keith on that, I would separate the young strokes out from
the old strokes and say that acquired brain injury of whatever
sort needs services. That I think should be a priority.
74. Mr Pope, what do you think as Chief Executive?
What is your view about that?
(Mr Pope) Undoubtedly if you are trying to improve
services for these types of patients then yes prioritise it. It
is just the context, I think, from my perspective of the range
of things that I have to do as a Chief Executive. The things which
in some ways you often miss are things about people resting in
beds receiving inappropriate care. One of the things I was talking
about, if you looked at one bed within my acute hospital, you
will get 90 patients through that bed in a year and if there are
one or two patients who are slow stream but not being given appropriate
care you can just see where the advantages could be but it is
unlocking resources elsewhere down the line. That will not give
much resource to rehab. I think there is the bit of working across
the sectors and showing, as in many of these things, the costs
are in other parts of perhaps our funding from Government, it
is not necessarily in health, in social care there is the effect
on business. I think it is trying to see the whole and trying
to say we recognise that is how we value what we do. Often we
are driven by numbers which we can quantify and that is quite
interesting about the study, I think there is a nice reflection
in there about how we value things.
75. If I were to be the Minister for Health
I would give you more money. Would you spend it on rehabilitation?
(Mr Pope) I am sure with Lynne Turner-Stokes around
I would. If you look at many of the things that are happening
at the moment there are real targeted funds going in and they
do get spent on those particular areas. There is a separate debate
about whether there is sufficient money going into the health
service or social care and we are on a five year programme to
increase resources so it is not going to happen overnight. If
it was then I think given the drive there and a set of guidelines
then you would see it happen.
76. You would spend the extra money on rehab
and how would it be used if you were spending it on rehab?
(Mr Pope) I think you have to be clear that it is
not just within my sector, it is making sure that it goes across
all the sectors because the barriers will still remain. We are
hearing that there are relatively small numbers and high costs
so you have to go down into the specialised commissioning route
where you actually have a bit more clout. It should not necessarily
be something directed through the chief executive of primarily
an acute trust with acute medical physicians with the benefit
of the regional rehab unit. I think probably through specialised
commissioning would be a way that you would get that targeted.
77. Providing the Government raises the profile
and raises the priority you think everything will get better,
that is the message?
(Dr Turner-Stokes) More money.
Chairman
78. If all of a sudden there was a shot across
the bows of chief executives from Richmond House to say "We
are kicking you up the backside in this area", this could
come as a consequence of what we may say. I get the general impression
that there is not a lot going on in Richmond House in this area.
I hope we can get them to think seriously about how we can improve
things. I want to use the term priority. I want to say can we
look at these things in a more focused way. If you have that message
coming in through your regional people and people who lean on
your waiting list, how would that concentrate your mind, not just
your mind but other chief executives' minds on addressing some
of the problems we picked up that need to be looked at. What could
we do that is not happening now?
(Mr Pope) I think one of the things that undoubtedly
will concentrate your mind is you would get another priority or
something that you are trying to focus on. It does have an effect,
I think you just have to see it in the context of all the other
things that you have to do and what we are trying to achieve within
the NHS. At the moment, I slightly digress perhaps, we are trying
to make sure that the vast volume of care, particularly around
emergency patients, sees a dramatic improvement because it is
not good. Although we are hearing terrible stories here, what
we do know is it is very patchy across the country. I think we
have the needs of the many versus the needs of the few. I think
we have got that right within the NHS and that is what we should
be trying to do, but with some kind of direction and support then
undoubtedly you will focus on these kinds of services. I know
within my organisation I have a team of people who will take that
forward, they will not need much encouragement from me to do that.
They might ask for help and support around training and encouragement
across agencies and that is what I would have to do as a Chief
Executive. So undoubtedly it will have an effect. There are things
we can do better than we do now and that is why talking to each
other and perhaps picking out some of the bad examples where you
can see where things have gone wrong and listening to carers and
people like Headway who say "Actually this is a lousy service,
it is not doing anybody any good", is good.
79. You mentioned winter pressures and a lot
of positives which came out of that.
(Mr Pope) Yes.
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