Select Committee on Health Minutes of Evidence

Examination of witnesses (Questions 20 - 39)



  20. Obviously you are a specialist in this area, so could you give us an approximate guess on how many social work departments are offering a reasonable service as compared to those who are not offering a reasonable service?
  (Ms Garber) That is very difficult. Kevin might be able to answer that more appropriately because he has just done some survey work on it.
  (Mr Curley) Could I comment on that, Chairman? Headway wrote to every social services department in England in the second half of last year and we got a 62 per cent response rate. In response to the question, "Do you have one or more specialist brain injury social workers?", the answer was yes in the case of 27 per cent of those departments. However, when you analysed those responses it turned out that something like half of those people are in fact social workers within physical disability teams with quite widespread case loads. Our best guess would be that something like 13 per cent of social services departments in England have some kind of specialist social worker. They may be calling that person a case manager or they may be calling them a brain injury social worker, and they may be located within a multi-disciplinary team and they may not.

  21. Is that all about resources or is it about attitude? In other words, do you think it is because they cannot get the social workers or do you think it is because they do not think it is a priority for them?
  (Mr Curley) The answer to that lies in the other question we asked, which is, "Do you have any kind of written strategy or plan for the provision or development of services for people with traumatic brain injury and their carers?", and only 24 per cent of social services departments that responded had any kind of written strategy or plan for service provision for this client group whereas, if you were to ask them, "Do you have a strategy or plan for people with mental health problems or for older people?", you would be astonished if they did not have a strategy or a plan. For this client group we are talking about 75 per cent of local authority social services departments having no plan.

  22. In other words it is attitude rather than resources?
  (Mr Curley) It is attitude and lack of priority.

Mr Austin

  23. Can I ask specifically about the children who have a parent or a sibling with a traumatic brain injury?
  (Ms Garber) I think this is a very worrying area. If you work, as I have done, alongside families from the point of trauma right the way through to community re-integration, you can see the effect on children is quite dramatic. There has not been a tremendous amount of research done but what there has been and published is very worrying. There is a very good comparative study with the children of brain injury families and children with parents with severe mental illness. What you are looking at is later on in life disrupted schooling, disruptive behaviour and quite serious signs of stress. They are a client group that really needs attention. I do not know of anywhere in the country that would focus on the children that would give time, even where you have a specialist social work service focusing on family stress. It is usually the primary carer who gets the most attention.

  24. If a parent thought that there was some problem later in their child's behaviour which they may attribute to that, would they have very great difficulty in re-accessing services, even if they can provide them in the first place?
  (Ms Garber) I think you would go through the child psychiatric services. The worry is that it might not be tracked back to the cause of that and it would be so much better, surely, to be preventative rather than wait for a crisis to occur in later life?


  25. I was struck by what you said there, Ms Garber, about good practice often being where the hospital social worker plays a key role. You heard my question about case managers or some co-ordinator, some key person, who is there to offer the kind of support that clearly was not available in the situations that we have heard about from Mr Wheeler and Mrs Hicks. I was also struck by something David Turner said—some of you will know David Turner.
  (Ms Garber) Yes.

  26. I have known David very many years, as you probably know. I read his evidence last night and he says that one of his concerns about local authorities—and he incidentally has a background of local authority social work as you well know—is that the lack of recognition has global effects, as he describes it, that are caused by severe brain damage. He says that the effects can fall into each of the usual community care plan client groups, ie, mental health, elderly, learning disabilities, physical disabilities, but most people with a severe head injury will fit into two, three or four of these divisions, a great bureaucratic barrier in finding the right services for the individual and his or her family. I thought that was a very important point, reinforcing what you said about the good practice being provided by somebody who is actually outside the department effectively, based in a hospital, presumably.
  (Ms Garber) I would not say outside the department.

  27. I appreciate that, but they are frequently hospital located. What I am trying to understand is, we are looking at what could be better practice. Are hospital social workers key people in this issue? Is this question of the categorisation an issue that we need to look at particularly closely?
  (Ms Garber) I think it might be a false distinction. I think if you had a brain injury aware local authority who were prepared to put in a wide service then that service ought to be able to go in and out of the hospital because your client is coming through a hospital service but needs to have discharge well planned. Who better to do that than somebody who understands the longer term? I would like to see a service that has workers who are placed wherever; it really does not matter where their base is. Perhaps I could say a few words about the head injury social work team that was set up in Sheffield as part of the National Traumatic Brain Injury Study. What we set up then was a two-person team, which turned out to be inadequate in terms of staffing, who met the family at point one, as soon as possible after injury and then were able to follow across hospital boundaries, so you were not tied to a particular hospital; you could move with your client, through to outpatient rehabilitation and then on into the community. You will appreciate that that actually gives you as the worker a good idea of the resources of each of the service and treatment areas that your client is going through but enables the family to have a person to help them through with transitions. You have a person who can manage those transitions and manage those discharges and referrals on. That is exactly what we were talking about. Where you come up against a great difficulty is the length of time that the difficulty is going to be with the client. We are talking about a lifetime access to services, not necessarily of the same intensity. You need to have something in place in the community that can then pick up and give people access as they require later. We are talking about a commitment of time from local authorities that is probably quite scary if they start looking at it because it may look like a low volume service initially but over time it becomes quite a high volume service.
  (Mr Curley) Could I make a point about reinforcing what David Turner said in his evidence about brain injury being a separate disability and by making a comparison with the situation in Scottish social work departments. For the past five years every Scottish local authority social work department, in preparing its community care plan, had has to identify as a separate category within the plan the needs of people with brain injury. As a result that has helped to generate far more priority and attention to that client group within Scottish social work departments. When you look at English social work departments' community care plans, and now most recently health improvement plans which have often taken in and subsumed the community care plans, you find, as we did last year, that—we got a hundred per cent response from English health authorities, so we can say with authority that only 33 per cent (meaning 33 health authorities) identified the needs of people with brain injury anywhere in their health improvement programme. If you make that comparison with Scotland, if there was a framework within which the health authorities and local authorities in producing these plans had to identify the way they were providing and the way they were going to develop services for people with brain injury, recognising that it is a separate disability that spans these other distinctions that David Turner wrote about, that would be a great impetus for change and improvement.

  28. Going back to Scotland, I am told that in Scotland there are social workers based in the neuro-surgery units. Are they specialising there or are they general hospital social workers who happen to be attached and they work in other specialisms as well? Do you know?
  (Ms Garber) I do not have the knowledge about everyone.

  29. Can you find out?
  (Ms Garber) I know again that there are some pockets of extreme good practice. Kevin is right: with that framework behind them there is an impetus more for development.

  Chairman: I would like to bring Peter Brand in at this stage. I was going to trespass on his territory by asking about the way we are moving towards PC teams and also perhaps we can throw in the issue of care trusts. Obviously we are wrestling here with the divide between health and social services. One wonders whether new models might be developed that might address this.

Dr Brand

  30. Can I ask a question first of Mr Curley? Looking at the health improvement programmes and also looking at your survey returns, and presumably we can assume that 36 per cent of non-respondents had no interest in brain injury, which makes the figures even worse, have you looked at how far these local authorities are away from the tertiary head injury care? Looking at some of the evidence we have had, one of the big blocks appears to be between tertiary care and primary care. Most patients tend to go from tertiary care back into a local secondary care provision of some sort where any expertise that might have been available gets lost before people get discharged into the community.
  (Ms Garber) Yes; yes.

  31. That is a pattern. Do you recognise it in some of the responses you have had from social services where they are at the end of a line of expertise and therefore do not recognise that there is a need?
  (Mr Curley) Overall we have found very few returns from social services departments which suggested that they gave any priority to this client group and that was the overall finding. As I said, only 13 per cent as far as we can tell employ any kind of specialist worker, either operating as a case manager or operating within a multi-disciplinary team.

  32. It might be interesting, Chairman, to find out whether that 13 per cent are located near centres of neurological excellence and therefore there is an awareness there, and that the further you get away from your tertiary care the less the concern is in social services departments.
  (Mr Curley) We have not done that mapping that you are suggesting and it would be an interesting exercise. Anecdotally we know of relatively good practice in, for example, Dudley, Nottingham, Sheffield and Derby. I suppose you could say that that follows the pattern that you are suggesting.

  Dr Brand: There is a real problem in isolated communities like the Isle of Wight which I represent, where the incidence is fairly low, of setting up expert services but that is no excuse for not having an awareness of the need. Do you think PCTs are going to make a difference in this?

  Chairman: And what about care trusts?

Dr Brand

  33. I think we do PCTs first and then we will see whether the model should be care trusts because that of course combines the responsibilities of both.
  (Mr Curley) In Headway we have been struggling to help local Headway groups to understand the implications of primary care trusts. About ten months ago I wrote a detailed guideline for groups on this subject, having spoken to chief executives of a number of primary care groups and a director of planning in two health authorities, and at that time (and I think still) the picture was unclear as to exactly what impact they will have. As far as I can see there is going to have to be co-ordination across several primary care trusts in relation, for example, to the purchasing of specialist rehabilitation for people with brain injury because the costs are so high. We took a hypothetical example when I was discussing this with a planning manager in Derby: a minibus full of young men going to a football match crashes on a Saturday afternoon and you have eight young men under the age of 25 with severe head injuries who all live in the same area of Derby. You could be faced therefore with £800,000 worth of rehabilitation to find post acute rehabilitation for those people if they are assessed as needing it. There is no way that a primary care trust is going to have that kind of budget, that kind of purchasing power, and therefore the arrangements would have to go up. It was interesting: we discovered when looking at the report of the National Specialised Commissioning Group annual report that the one subject which most regional specialised commissioning groups have chosen to look into after they have dealt with the ones they are required to examine by central government was neurological services and that arose from a particular concern about how brain injury rehabilitation in some of these regions was going to be funded, because the word coming from primary care trusts is that this is not something that they are going to be able to budget for because the costs can be so enormous.

  34. So it is not only the expertise that needs to be located regionally but the resources also ought to be in your opinion?
  (Mr Curley) I think it is difficult to see how one primary care trust could have either the expertise or the funds to deal with the sort of situation I have just described, and indeed with lesser situations.

  35. Mr Wheeler, there was some difficulty in finding you a place near your home or near your relatives. Was that because there was not a bed available or because there was not a contract for your medical needs with the hospital that you wanted to go to?
  (Mr Wheeler) I can only answer that very vaguely because at the time I was completely out of action. To my knowledge and from what my brother has told me I think there were no adequate beds available.

  36. That was the one in the Midlands, was it not? What about the one in Edgware?
  (Mr Wheeler) He could not find anything in north London nearer to where my brother lived at the time, which was Edgware. There were no suitable beds.

  37. Can I ask Mr Curley whether nationally you have evidence that the disappearance of ECRs (extra contractual contracts) which meant that money could follow patients, with OATs, which is out of area treatment, has made a difference? I certainly am getting evidence about it.
  (Mr Curley) Our evidence is anecdotal and it is based on last year, just over 5,000 enquiries to our information team. Sixty per cent of those enquiries are from carers and survivors from brain injury, so it is anecdotal, but we get many stories of people who are refused out of area treatments at specialist brain injury assessment and rehabilitation centres despite specialist reports having been prepared, often by the health authority's own specialist staff recommending that people have those treatments. I cannot give you a number throughout the country because I do not think anybody would collect that information, but anecdotally we know that this is a common theme of people who telephone Headway looking for help. It seems to be a problem that these sorts of out of area treatments are expensive, but it is also often, if I can put it this way, an arrogance on the part of some health authorities that because they have something called the rehabilitation service that can cater for everybody who needs rehabilitation, even though the rehabilitation service may well be geared up principally to deal with physical rather than cognitive rehabilitation.

Mrs Gordon

  38. Mrs Hicks and Mr Wheeler, you spoke very eloquently about the support that Headway had given you in the recovery process and their role in that. I just wondered if there was anything else that you wanted to say about voluntary sector help that you received during that process. Perhaps I could ask Mr Curley about what you feel could be done to help organisations like yourselves, how you could enhance your role given that you rely on I think 98 per cent voluntary donations to keep your organisation going. What would actually help you in your work?
  (Mr Wheeler) I would like to make a very important point which I do not think I had the chance to make. That is that though I have made a very good recovery and I look a hundred per cent to everybody round the table, it is very important to have ongoing treatment and care which is provided both from Headway and also from Rehab UK. I feel fine but there are still a lot of psychological problems there and I am sure that would be the case for everybody who has had serious head injury who has had the good fortunate to make such a good recovery as myself. I think that is something that has not really been talked about yet round the table.

  39. How does Headway give you ongoing care? What do they do?
  (Mr Wheeler) For instance, if I am having psychological problems where I am feeling a bit low, so to speak, and it is quite difficult for me to put things into perspective, the normal household things that I could handle with no problems at all in the past I could possibly get myself into a terrible mess worrying about, completely unnecessarily it would have appeared to me before my injury, I can contact people at Headway in Moseley at the hospital there, and also, quite importantly, at Rehab UK who were the people who took me on when I decided to take medical retirement which was through a psychologist who I had who was connected with head injuries rehabilitation and Headway plus the Post Office Occupational Health Services, who were excellent when I decided to take medical retirement. It was a big decision because I was proud to be back at work and I thought I would work again. The Post Office were brilliant. The problems at work were the shop floor. Everybody I felt was against me, which they were not. I do not like to criticise my work mates. I just found it impossible to cope with the work place and the bickering and backbiting that you get everywhere I think in the work place. I thought it was all being aimed at me. Then, 14 months after my head injury, I had a very bad convulsion which was a complete backward step for me. I thought I was making really good progress and I felt awful. I lost all my confidence and this is why I am saying that the ongoing help provided by Headway is essential. I can go back to them because although my confidence is probably about 80 per cent, it is still very brittle and I need that support.
  (Mr Curley) Thank you for the invitation, Chairman. I had come promising not to say anything about money for Headway but as you have given me the invitation perhaps I can say two things. First, most Headway services are delivered locally by local Headway groups. They are not delivered from the office in Nottingham where I work. The problem for many local Headway groups is that although the social services department will contract with them and pay them a daily rate for providing activity and long term rehabilitation in a Headway house, they invariably will not or cannot provide the necessary funds for the development of new services. All over England you will find that where Headway groups are trying to develop new services, whether that is long term rehabilitation or family support or trying to address the needs of the children in families and so on, they are doing it with short term money such as National Lottery grants and it is very fragile indeed. I suspect this is a bigger problem than Headway and funding from social services for brain injury. There does need to be a recognition that if the voluntary sector and Headway groups are going to develop services for people with brain injury and for families there has to be some development money. You cannot just pay organisations pounds per person per place in a Headway house. Otherwise, as I said, the developments will not occur. The second point I would make is that the Department of Health has a really useful grant fund for organisations like Headway. It is called the section 64 fund. It is hopelessly over-stretched and it would have huge ripple multiplier effects if that small Department of Health fund were to be increased.

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