Select Committee on Health Minutes of Evidence

Examination of witnesses (Questions 40 - 53)



Mr Austin

  40. You are also working with those who have experienced strokes as well as people involved in traumatic brain injury. What is the breakdown of numbers that we are talking about?
  (Mr Curley) In Headway's case we surveyed all our groups last year and found that just over one half of Headway groups are now providing some kind of support to stroke survivors and indeed to survivors of other types of acquired brain injury, people who maybe have had an operation for a benign brain tumour, people who have had encephalitis and so on. In Headway's terms we reckon that about ten per cent of the people we are helping throughout the movement have had acquired brain injury other than traumatic brain injury.

  41. Would the balance of services and support differ in any way?
  (Mr Curley) That we provide or that are provided generally?

  42. That are provided or need to be provided.
  (Mr Curley) If you started to compare where we are in terms of services for people with traumatic brain injury, say, to people who have had strokes, we are light years behind. Last year national clinical guidelines for stroke were published and that accelerated the process of improvement. All over the country, as a result of those guidelines, health authorities are requiring trusts to produce care pathways for stroke. There are very few examples where there are published care pathways for people with traumatic brain injury, so we are long way behind stroke provision in Headway's view.

  43. Could the provision be built on to that which exists for stroke rehabilitation or does it need to be provided separately and distinctly?
  (Mr Curley) I think there are lots of distinctions between the needs of people who have survived a stroke and the people who have had a traumatic brain injury. One of the most important is that most people who have had a traumatic brain injury are young men under the age of 35 who ought to have a lifetime's productive economic activity ahead of them and who, with proper rehabilitation, could have, whereas for stroke survivors many of those people are over the age of 60.

  44. Could I take you on to the question of co-ordination between services, whether it be health authority or social services, the interlocking with the benefits system? I think Mrs Hicks gave us a very clear example of a lack of joined-up thinking in terms of her own experience. How well do those agencies, clearly the Benefits Agency and the Employment Service, work together in such cases?
  (Mr Curley) Again, in terms of our own experience from the people who contact us and the people we talk to in Headway groups, all too often the Benefits Agency shows it has very little understanding of brain injury. This is particularly noticeable where a general practitioners carry out assessments for disability living allowance. All too often we hear of cases where people with a brain injury are either refused a disability living allowance or have been receiving it and then the allowance is withdrawn? The commonest problem there is that the assessor and the assessment process do not enable the person to express the huge cognitive problems they have got. I have lovely classic stories such as the doctor asks the survivor, "Do you enjoy gardening?", and the survivor says, "Oh yes, I love gardening", but the carer interrupts and says, "But he has not gardened for ten years". If you are not careful, if there is not a carer there or, as often happens, the carer's opinion is excluded, or the carer is told to leave the room while the assessment takes place or is told not to speak, then doctor says, "Do you enjoy gardening?", tick, "Yes", and so the process would go on. There are big problems with the ignorance within the Benefits Agency assessment processes of the severe problems people face, which are not to do with physical disability but to do with cognitive disability.

  45. I noticed Mr Wheeler was nodding while you were speaking there. I presume he would agree with that. I assume you have had some personal experience.
  (Mr Wheeler) Not quite as extreme as what Kevin was talking about there. The problem I had was when I took medical retirement and went to Rehab. My intention was to be back at work. I wanted to be back at work. That was very important to me, so I was on a pension through the Post Office. That was fine. But for me to try and get disability allowance, I was able to get disability allowance but (and I might be incorrect with my figures here) it was about three or four months and I still had not got a job then so I had to cope just on the pension. I did work out my finances and my brother helped me of course, and so I was able to cope, but I was not very happy that I was not able to get the disability allowance for very long. I am about 90 per cent sure of this, but part of that was due to the fact that I had too much savings and I was very frustrated about that because, being a postman, which is what I was before I took medical retirement, as I am sure you will know the pay base was not very high, I thought, "I have saved my money and my disability allowance has been closed within a few months". I thought it was rather unfair.

  46. Can I ask generally, perhaps to Jenny Garber or to Kevin Curley, about the level of vocational rehabilitation services that may exist through the Employment Service or elsewhere and how people access that?
  (Ms Garber) My experience is that again there are pockets of good practice but generally speaking you are going to come up against the same barrier of ignorance about the hidden parts of the disability. Even where you have disablement employment advisers and people go through the Employment Service process there may be lack of understanding of exactly what that client is going to need in terms of structuring a workplace to make it viable for them. Secondly, there is a really difficult problem with the length of work placements that the Department of Employment can find for people attempting to return to work because they work on a six-week placement maximum. That is barely long enough for a person with cognitive difficulties to have got their way round that system at all. Then they have to leave and they cannot return to that place, they have got to go to another one, so you start the process all over again. There is also—and this is a very recent experience of mine in the NHS Trust I work in—a push on the part of the people giving those placements, the employers, to make it right for the client, so they tend to write very good reports at the end of a placement which actually does not describe all of the details that you as a clinician would want to be described in order to make best use of those practice experiences. It is a very difficult system. It does not really fit with the need for the client group.

  47. How well do the agencies, employment, benefits, link in with the voluntary sector, particularly Headway?
  (Mr Curley) Again it is so difficult to generalise because the position is very varied across the country. I would like to tell you about one example of particularly good practice because it is very heartening if only we could replicate this all over the country. This is from Aylesbury Vale where the community head injury service there for the past three years has co-operated with the Employment Service, with social services and with Headway and has drawn in funding from all those places plus European money and as a result—I saw the statistic this week—no less than 64 per cent of the patients with severe brain injury who have been through their vocational rehabilitation programme in Aylesbury Vale went on to either full time or part time employment and were still in employment at the one-year follow-up stage. That is astonishing. It is such good practice that the NHS awarded a Nye Bevan award to the Aylesbury Vale service last year. I am afraid that is very rare. In many parts of the country I think it is fair to say that there will be no specialist vocational rehabilitation for people with brain injury.

Dr Stoate

  48. Ms Garber, how wide is the concept case management and how widely do you think it is actually used?
  (Ms Garber) I think the concept of case management is critical. The evidence that you have heard this morning gives you a feel for a very tough and complex area of disability which needs careful managing. The case managers as titled are not used within the NHS or within social services but I do not think the title matters. I think the important thing is to have somebody who can take an overview, who can manage transitions, who can manage referrals on, and that person has to be somebody who is listened to by the clinical teams. My own view is that that can be done perfectly adequately by a specialist social worker but we need to have local authorities taking that aspect of work seriously enough to devote resources to it.

  49. It is not widely used at the moment?
  (Ms Garber) It is not widely used. There will be social workers in some places, there will be care managers, but because of the priorities of the department they come from they are rarely able to give enough time to do sufficiently the job.

Dr Brand

  50. There has been recently announced the National Service Framework for people with long term conditions and the NICE management guidelines presumably are going to help with this. Have you had any input in that process or will you have any?
  (Mr Curley) Speaking for Headway, we have been assured by NICE that there will be patient representatives on the development group for head injury clinical guidelines and we would hope very much that Headway will be able to appoint one of those patient representatives to that group. We would attach enormous importance to those clinical guidelines. I mentioned earlier that we have seen what a big difference they are making in terms of stroke services and we believe that potentially they could make a big difference in terms of head injury services. Obviously we welcome the National Service Framework. If it is going to spell out national standards for brain injury services and what they aim to achieve, how they should be developed and delivered, how to measure performance in every part of the country, this would be considerable progress. The only cautionary note I would make is that I looked back at the National Service Framework for mental health a few days ago and in his introduction Frank Dobson said, "... and we are accompanying this National Service Framework with an extra £700 million over the next three years". In terms of brain injury services money is not all of the answer, as you have heard from my colleagues. There are lots of other issues to do with training and attitude, but money has to be part of the solution. If rehabilitation, as we know from many people with brain injury, costs £50,000 per person even for half a year's rehabilitation, then the National Service Framework would have to be accompanied by extra resources.

  51. But you have got input into the process of writing the National Service Framework?
  (Mr Curley) Yes, we are leading members of the Neurological Alliance and we have been invited to be involved in the process.
  (Ms Garber) The United Kingdom Acquired Brain Injury Forum, of which I am part of the Committee, would also want to be part of that process, clearly, and are beginning some work on integrated service frameworks.

  Dr Brand: We had a debate in Westminster Hall on neurological services and it was raised that we need more resources.

Mr Amess

  52. Just very quickly. I had a friend whose son was knocked off of a bike in the Strand—this is a good few years ago—and I tried to help the family. He ended up in Putney Hospital and subsequently died but all the things you have described I certainly experienced with them. Just to help us as we prepare the report and recommendations which we hope the Government of the day will react on. Are you really saying, all of you, that it is all down to more money or is there something more simple that we could do to help?
  (Mr Curley) I think there have to be more resources. There are simply not enough beds in dedicated rehabilitation centres or places within community based rehabilitation teams. I think it is clear from what my colleagues have said it is also about training. It is also about access to information. It is also about this wider concern to respect the patient and respect the carer and recognise that the carer can be a crucial part of the solution, a crucial part of the rehabilitation of people rather than an old fashioned attitude of excluding the carer "please go out of the room while I talk to the patient". So there is much more to it than money I think.
  (Ms Garber) Yes, I would agree. I think it is stimulating a push towards training and accreditation and the understanding of brain injuries as a specific disability.

Mr Austin

  53. Just a final one to Mr Curley. In their evidence the Department of Health talk about getting people to have functional independence and their Job Retention and Rehabilitation Pilots. To what extent has Headway been consulted or involved in that?
  (Mr Curley) If this is in connection with the requirement that every health authority produces a joint investment programme on welfare to work for disabled people then I am confident that our local groups in some areas are being involved in that process. In terms of our UK wide operation we have not been involved in that.

  Chairman: If there are no further points can I thank our witnesses for their co-operation. I think Mr Curley and Ms Garber would have no objection to me particularly thanking Mr Wheeler and Mrs Hicks for coming along and sharing with the Committee your own personal situations. It has been most helpful. If there are issues you think we have missed or you wish to expand upon which we have not had time for, please feel free to write to us. If you wish to stay for the rest of the session we will be very pleased to see you. Thank you very much.

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