Select Committee on Health Minutes of Evidence

Examination of witnesses (Questions 54 - 79)




  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.


  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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