Select Committee on Health Minutes of Evidence

Examination of witnesses (Questions 1 - 19)




  1. Can I welcome colleagues to this session of the Committee and particularly welcome and thank our first group of witnesses. Can I also take the opportunity to place on record the Committee's thanks to all those people who have submitted written evidence to this short inquiry. We are very grateful. We have received a huge amount of information which is very helpful to the Committee. Can I begin by asking our witnesses to introduce themselves briefly to the Committee?
  (Mrs Hicks) I am Mrs Angela Hicks and I am here because my husband had a severe brain injury 17 months ago.
  (Mr Wheeler) I am Mr Peter Wheeler and I had a serious head injury in July 1994.
  (Mr Curley) I am Kevin Curley and I am the Chief Executive of Headway—The Brain Injury Association.
  (Ms Garber) I am Jenny Garber. I am a social worker by profession and now a brain injury case manager working both privately and in an NHS Community Trust.

  2. Can I begin by asking Mr Wheeler and Mrs Hicks to say a little bit about their own experiences, how you have perceived the services that have been there to support you in your circumstances, or not there as the case may be? Obviously we have read lots of submissions where questions have been raised about people who have had specific difficulties. We want to try and look at the key themes in relation to what we can perhaps recommend should be done about addressing some of the problems. Would you like to describe briefly your experiences to the Committee?
  (Mrs Hicks) I would say that the acute care that my husband received was very good and that there was a strong attention on his progress, particularly medically. However, that did not extend to the family and I felt extremely excluded; I felt that I had very poor information. There was a lack of communication between professionals and to me. I felt extremely isolated. That is a theme that has run right through from the very beginning to where we are now and it continues to date. The most supportive area I have had has been Headway which has been the only consistent source of information and support and advice throughout our experience.

  3. Just out of interest, where are you from?
  (Mrs Hicks) I live in Essex.

  4. So your husband was treated at a hospital in Essex, was he?
  (Mrs Hicks) My husband was treated initially at a general hospital in Essex. He was too critically ill to be transferred for three days. He was then transferred to a neurological unit and specialist intensive care where emergency surgery was carried out. He was very critically ill for some time. He was then transferred back after three and a half weeks to a general hospital. He was placed in an orthopaedic ward for two weeks where many of the staff knew nothing about how to manage a brain-injured patient with a tracheostomy. By then I had learned a great deal just by watching and listening and asking questions. He then spent four months on a general hospital ward where his emotional vulnerability was acute because the nursing staff did not have the time, expertise or knowledge to know how to deal with a severely brain injured patient.

  5. If he had had his injury in another part of the country would the system have been different? Are you aware of more appropriate care pathways in other areas?
  (Mrs Hicks) I am aware through my discussions with Headway that it is very patchy across the country and where you live has a strong impact on the type of care you receive. Obviously it is best to talk to them in more detail. There was a very stark difference between the five months that he spent in the general hospital and the subsequent five months that he spent at the Regional Neurological Rehabilitation Unit at Homerton in Hackney where both I and he had incredible support. We felt involved, included, part of the process, part of the solution and not part of the problem. The comparison is just incredibly stark.

  6. So there are models of good practice that you would point to?
  (Mrs Hicks) Absolutely.

  7. He ended up on a general nursing ward with what kind of other patients?
  (Mrs Hicks) It was loosely termed the rehabilitation ward. It was predominantly elderly people. I could not really match the word "rehabilitation" with the death rate. It was during the `flu epidemic of late 1999, early 2000.

  8. So your experience is quite recent?
  (Mrs Hicks) Oh yes. The injury was in October 1999.

  9. Mr Wheeler, tell us a bit about what happened to yourself and your own views on how you have been treated.
  (Mr Wheeler) It was a cycling accident in Kent. I was moved from Canterbury to Atkinson Morley in Wimbledon. The emergency treatment was fine but then I was moved on to Heartlands(?), just like Angela's husband. It was an orthopaedic ward which was totally insignificant once again, and my parents, my brother, Headway, were the help. My Mum and Dad brought me out of hospital, I was at home and then Headway came into it as well. Headway in fact went to Heartlands Hospital in Birmingham, which is near home. I was transferred there after my coma, and Headway came to visit me, Mary Boyer who has retired now, and this information was not given at all to my parents and my brother. They found out about this quite a while after I returned home. From being at home they switched me to the Head Injuries Rehabilitation Hospital in Moseley and I was there for three days a week for treatment to rehabilitate my memory loss, etc. They could do nothing with the deafness in the left ear which is for life.

  10. You mentioned that you were transferred on to an orthopaedic ward. Were you having orthopaedic treatment of any kind at the time or was it just that you were placed on that ward because there was nowhere else for you to go?
  (Mr Wheeler) I was transferred to that ward basically because it was closer to home. My brother, who lived in Edgware at the time, attempted to get me transferred to a hospital closer to Edgware when I was off coma in intensive care, and he had no help at all with that. That is why I was transferred. There were no vacancies in Smethwick which would have been suitable for head injuries. They just transferred me to an orthopaedic ward which was totally unsuitable.

  11. Looking back on your own experience, both of you, quite recently, you mentioned, Mrs Hicks, that there are examples of good practice. How do you feel your experience might have been managed differently? If we are looking at improving the system, which is the focus of our inquiry, how do we pick up some of these points, what would have been helpful to you in relation to your experiences? How could the system have been bettered in your own situation?
  (Mrs Hicks) First of all you have to recognise that ultimately the family is hopefully going to take care of the person and work with the person that has the head injury. If you exclude them and do not involve them then you are likely to set up long term problems. As I said, the family is part of the solution, not part of the problem. Therefore, you need clear information and you need to understand what is happening, what the implications are for your partner or the person who has had a head injury. You need to have communication with the professionals. You need emotional support, which is not forthcoming in any way, shape or form. That is something that you need to go out and find yourself. I can say that if it was not for Headway I would not be in a fit state to talk to you today. You need appropriate treatment with people who understand the effects of brain injury. I saw numerous cases of staff who did not understand. I do not blame the staff for that. I blame inadequate training and inadequate resourcing.

  12. Obviously you have had great support from Headway. One of the things that I have learned as a member of this Select Committee is that so often people who are facing particular problems are often better helped by those who have had the same problems themselves. I have certainly found that in mental health on many occasions. Are you arguing on that basis that the state, local authorities and health authorities can never offer that kind of insight into what you are going through?
  (Mrs Hicks) No.

  13. Or are you saying that there are steps that can be taken to afford you the kind of support and advice that clearly was lacking early on in your case?
  (Mrs Hicks) I think there needs to be a marrying of the two. I found that it was very rare that information was ever offered to me within the health service, social services setting. I had to seek it; I had to find it; I had to make appointments, I had to badger people. It was quite common for people to come and stand at my husband's bedside, discuss his case, ignore me completely and walk on. That was common practice. I would have to say, "Excuse me. Could you just tell me what is going on?" Probably the starkest illustration would be having the first case conference which discussed my husband's care package when he was to be discharged. I am a primary school head teacher. I was intending to return to work in the September following his discharge. I met the social worker five minutes before the case conference for the first time. We discussed his care, the package that would happen, the community care that would need to be there because he needs 24-hour supervision. They said they would cost it, work out what it would be, present it to panel. I went away traumatised. Having seen the effect that inadequate training could bring on him, the thought of allowing people into my home who may know nothing about brain injury, where there could be no guarantee that there would be continuity of care, I could not offer that to my children and my husband, so to me the only alternative was to give up work. I believe that there are other government departments that would quite like to retain head teachers and teachers at the moment. I rang Headway in desperation. That was the first time that somebody said to me, "What about the direct payment scheme?" I asked, "What is the direct payment scheme?", and they explained that it was a scheme where the costs were analysed, we were then given the money and we became the employers of the carers. Going back to social services, when I asked why this had not been told to me, they said, "We thought it would be too complex for you to manage". I do not know on what basis they made that decision. I was incensed, so yes, if social services are promoting independent living through the availability of direct payments—and Essex social services in their document Equal Lives say that they are doing that—they need to do it effectively. The professionals who are in the health authority need to be communicating with the people they are caring for.

  14. Mr Wheeler, can I ask you about your views on the relationship between the health service and social services in your case? Clearly there are distinct guidelines and organisational frameworks within which they operate. From your point of view has that caused you any problems?

  I am anxious to explore the organisational difficulties that we as a Committee have picked up between the National Health Service and the local authority social services, two different frameworks. One of the themes of evidence that has come through loud and clear is the need for some case manager, some co-ordinator, some key person, who understands exactly what Mrs Hicks has just described, who has got insight into the circumstances that you have faced. What I am anxious to work out is where that person is best placed, or are we talking about two different people in local authority or in the health authority or what?
  (Mr Wheeler) Angela Hicks described a great deal of the problems that were relevant to myself. If it had not been for Headway and my parents and my brother I do not think I would have gone anywhere because I was not well enough. The first year I was not well enough to do anything. My memory loss was terrible and I was not well enough to appreciate the seriousness of the accident. It was all down to Headway, my parents and my brother. Then later on, when I did realise and I did return to work, I had to take medical retirement for psychological reasons. My back-up support was non-existent. Without their help I do not really know where I would have been. I think I would have had a lot of difficulty. I think it would have been impossible because it took me a long time to recognise the seriousness of my accident and it was through the help of Headway, head injuries rehabilitation and later on Rehab after I took medical retirement, that I was able to cope.

Mrs Gordon

  15. Mrs Hicks, your husband is lucky that he had your support to fight for him and Mr Wheeler that he had his family to support him and help him through the treatment system. What do you think happens to people who do not have that support or are not articulate enough to be able to work their way through the system?
  (Mrs Hicks) I was devastated on the day that my husband left the general hospital. He had been sharing a bay for three months with an elderly gentleman who was very cantankerous and very difficult with the staff; he kept forgetting things like his phone number. His family kept shouting at him and saying, "For goodness' sake, you have lived here for long enough. Can't you remember your number?" On the day that we left after three months I discovered that he had had a blood clot removed and he had suffered a head injury. It was very apparent that neither the nursing staff nor his family had any understanding that how he was behaving was probably largely due to his head injury. They said, "He has always been grumpy", but this was different. I still think about him now. I wonder what has happened to him. I think that if the family are not supported and they believe some of the things they are told, which I did not, then people have their lives wrecked. I do not think they have the ability to go anywhere. I think also, reading further, you are then looking at people who are likely to suffer in other ways in terms of turning to crime, turning to other difficult paths because they do not have the support, because they do not understand their problem, because the family do not understand their problem. There are some families who either cannot or do not know how to fight. My husband and Peter are lucky because they have families that are strong.

  16. How did you hear about Headway?
  (Mrs Hicks) I saw the poster on the day of my husband's accident and felt relieved that that would not ever involve us. After a week I realised I needed information and there was a poster in the ward and I went and got the number and I rang and that was the beginning of tremendous support in terms of reading material, help lines, professional counselling, art therapy workshops for my children, advice with solicitors and seeking compensation, knowing what questions it was you needed to ask. If you do not know what you need to ask you are stuck. That was the guiding light from there.

Dr Stoate

  17. Ms Garber, can you tell me what particular problems there are that social workers face in the management of head injury patients?
  (Ms Garber) Yes. I had this question in advance and what I did was to ask some of my colleagues because I am part of a national group, a brain injury social work group. From my own experience and from theirs the points that they would want to put to you would be that it is an extremely complex disability, as we can see not understood even by health professionals who deal with it on a regular basis sometimes. It takes a lot of time to go through the right process with the family. If you are working with a client who has had a brain injury you can see family need but maybe your remit is not to deal with that family need. Nevertheless that is an impact on you as a worker. Social services departments tend to have very limited understanding of brain injury. There are very good practice pockets around the country but by and large it is not a well understood disability in social services. There is very limited training money within social services budgets. You can appreciate that their priorities are elsewhere, so to skill up the social services force to deal correctly with this issue is problematic. There is very limited management understanding. You will appreciate that there will be hospital social workers and community social workers who will be attempting to tackle individual problems but their line manager will not understand the difficulties of the work that they are doing. That is a major issue. Supervision is likely to be appropriately given and perhaps to some other areas of social work. There is also likely to be limited community resources that are specific for brain injured persons. Therefore you are tailoring what resources there are to the needs of your client. There is particularly good work done by some of the clinicians in other areas of the world. I would draw your attention to Barry Willer who is a psychologist in Canada who talks about the "whatever it takes" method, meaning that you use the local support, you use the personal support networks and community support networks. That is a very good theoretical proposition but it takes a lot of time to do that. If you have somebody whose disability is hidden, who walks into a community group, behaves badly and perhaps does not turn up on time, they are going to get themselves excluded. You as the worker have to make sure that resource works for your client and that takes time. Social services are under great pressure at the moment. Their workers are always stretched so there is rarely the time to give to those cases.

  18. So social services are not really very good at all at handling this problem?
  (Ms Garber) I think so, but not in every case. I would say that there are authorities where there are pockets of extremely good practice but it is not widespread.


  19. What is that good practice?
  (Ms Garber) That good practice says that there will be a social work presence in a hospital at an early stage that understands the longer term nature of the problem, that there will be some understanding of brain injury as a specific disability and not putting it into a box it does not fit into. Social services tend to look at their longer term services in terms of mental health, physical disability and learning disability, and people with a brain injury may have needs that could be serviced by the skills of any one of those but it does not quite fit into any of those boxes. If you plonk it into one or the other you are going to get boundary difficulties. Where you can have permeable boundaries, where you can have services that are open to a client who may not absolutely fit into your box, that is going to be the better service, where you can give your care managers or social workers, whichever they are designated, time enough to do brain injury social work well. It does happen around the country but it is not a priority in local authority services.

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