Select Committee on Health Minutes of Evidence



  Since my husband was critically injured in a serious road traffic accident, sustaining multiple injuries and a severe brain injury we have struggled to come to terms with the wide ranging effects of the injury on our lives. This paper outlines some of the difficulties and successes we have encountered in our dealings with services to support the brain-injured.


The General Hospital Ward

  The first five months after the accident were spent in Intensive Care and on general hospital wards. The strengths and deficiencies of the early months of my husband's treatment and care are detailed in my earlier paper "Hospitalisation after Severe Head Injury: One Family's Experience".

  The transfer from a general hospital ward to a specialist neurological rehabilitation unit had been long awaited. For some time I had been convinced that my husband had greater comprehension and potential than was generally recognised and acknowledged. Of course, I understand that medical professionals must regularly be faced with distressed relatives struggling to cope with what has happened, but there are two possibilities to which they must open their minds:

    —  The close family may be building up false hopes, seeing what they so desperately want to see rather than accepting the reality that they want to deny.

    —  The close family may be right! Their unique understanding and knowledge of their family member may well give them greater insight and ability to recognise and understand their responses.

  I had struggled to prove what I believed with written reports to senior staff and a detailed notebook of observations, comments and activities which I kept by my husband's bedside for staff and visitors. Anyone who took the time to read these reports and journals could see that my observations were not the product of an over hopeful and active imagination, but rational, precise and accurate judgements on my husband's progress.

  One key episode remains firmly etched in my mind. I was sitting with my husband and discussing our concerns with the speech therapist. She listened sympathetically as I explained how many of the staff spoke to him in a patronising manner, underestimating his intellect, "jollying" him along, giving him insufficient time to listen to information, process it and attempt to formulate a response. Under pressure to "perform" his standard response to nursing staff was to lapse into a state of panic, perseverate on the word "Yes" to everything and ultimately to "play along" as if to make them go away! His frustration was growing daily and his neurological improvement seemed to be inversely matched with emotional decline. The speech therapist was one of the few staff members who truly recognised the depth of his understanding and the accuracy of my observations. Turning to him, she asked how this patronising attitude made him feel. Both of us were taken aback by the vehemence with which my gentle husband, who was having such difficulty with expressive language leaned forward, issued a stream of confused and passionate sounds and then said "You scumbags" I know better than you do!"

  I was desperate for my husband to be transferred to the specialist Regional Neurological Rehabilitation Unit (RNRU) at Homerton Hospital, Hackney, having discussed referral with the consultant in January. My contact with Headway, the Brain Injury Association, and my own experience within the educational field had convinced me that I needed to be my husband's advocate; to be clear and decisive in trying to obtain the best possible treatment for him. I also believed that time was of the essence, since it seemed that the greatest progress is generally made in the year post-injury.

  In February I was delighted to hear that my husband would be assessed by the RNRU on 10 March, but then devastated when the Sister at Broomfield told me that if he were accepted the waiting period could be eight months. I spent the next 24 hours on the telephone to every source of advice I could think of, gathering as much information as I possibly could about rehabilitation units and prioritisation. If he did have to wait eight months, that would be 13 months post-injury—and my extensive reading suggested that the first 6-12 months is the critical period in which most progress is made. In desperation I rang the Unit direct and was assured by the Senior Sister that the wait was more likely to be six-eight weeks. I never did find out where the "eight months" suggested originated—but how easily just one comment can lead to severe emotional distress. In fact, my husband was admitted to the RNRU on 28 March, two and a half weeks after his assessment.

  I believe that:

    —  General hospital wards do not have sufficient time, training, expertise or resources to support patients with severe brain injuries. This is not to imply criticism of the nursing staff themselves, but to highlight the inevitable lack of expertise in an undeniably complex field.

Specialised Brain Injury Rehabilitation Services

  For us, Homerton represented a beacon of hope in a sea of frustration and misunderstanding. The greatest danger in building up hopes and expectations is that it is all too easy for them to crumble in the face of reality. The RNRU Homerton has an excellent reputation and I had only heard positive feedback from past patients, relatives and professionals.

  The transfer itself was difficult for both of us. We had spent the past four months on the same ward, and, whatever the deficiencies, you become used to routines and develop relationships with familiar faces. I found it particularly difficult to leave my husband at the Unit, knowing that he would now be 45 miles away from home rather than 7. Once again, we had to start to build relationships and initially both of us were somewhat traumatised by the nature, severity and effects of some of the neurological injuries on patients. It is a sobering thought to survey the dining room at Homerton and reflect that not so long ago, each patient was leading a normal, ordinary life.

  The most noticeable difference was in the way that patients were treated by almost all of the staff. It was wonderful to be spoken to as though we were a normal couple—although with the patience, care, time and insight that a brain-injured person requires. It is as much an issue of tone as it is of content. I believe it is to do with trying to be in touch with the person that they were before the accident or injury, as also highlighted by Dr Caroline McCagg, talking about brain injured patients at the JFK Johnson Rehabilitation Institute, New Jersey:

    "People respond to who he is now with the awareness of who he was before. That's very important—that you have the feeling of who they are, even if they can't convey it with words or with actions"—(Dr Caroline McCagg, —"Raising the Dead"; Channel 5; 2000)

  Of course, as in any profession, the RNRU staff are not without fault, but one of the strengths of the Unit is that Senior Staff recognise this, welcome feedback and seek constantly to improve. Other positive factors include:

    —  The specialised nature of the therapists, who have particular training and insight in dealing with neurologically damaged patients. My husband made particularly impressive physical progress, far exceeding expectations. He entered the Unit in a wheelchair, having taken a few steps with a walking frame. Five months later he was able to walk half a mile and climb stairs with supervision. He also made good progress in Occupational Therapy and was regaining some basic independence in self-care needs. This has a dramatic effect on self esteem and confidence.

    —  The range of professionals on site, including a neurological consultant, doctors and nursing staff, speech and language therapists, occupational therapists, neuro-physiotherapists, social workers and a neuro-psychologist who also offers support to relatives and children in the family

    —  The inclusive attitude towards close relatives and recognition of the family's needs as well as those of the patients. Both the patient and close family are actively involved in setting realistic goals and making explicit their hopes and expectations for achievement

    —  The accessibility of staff, therapists and the consultant neurologist, Dr Greenwood, to answer questions or discuss concerns

    —  Visits were made to our home by the therapists with my husband, so that they could accurately ascertain what modifications would need to be made whilst he was actually in the home setting

  I believe that:

    —  The field of brain injury is so very complex and specialised that there needs to be a wide ranging review of existing provision to ensure that every patient receives the appropriate level of care, support and treatment that they need and deserve at each stage of the recovery process


  On 7 June 2000 a Case Review took place at Homerton Hospital, with my husband, myself, RNRU staff and the Case Manager from Social Services in attendance (who we met for the first time that day). It was agreed to work towards a discharge date of 21 August 2000. Since my husband required 24 hour supervision and I would be returning to work as a Headteacher full time for the Autumn Term, he would need support from community carers between 8:00am and 5:30pm each weekday. The Case Manager said she would cost this and present it to the relevant panel.

  I spent the next few days engulfed by waves of fear, panic and confusion. My husband and I are essentially private people who have shared a strong, close and loving marriage. Whilst we have many friends and acquaintances, our greatest enjoyment and solace has been in one another's company. The thought of opening our home to a succession of carers was almost intolerable. There was no guarantee of continuity of care or even that carers would have any detailed knowledge of brain injury. Having seen the traumatic effect that lack of empathy and understanding had wrought on my husband in a general hospital ward, I knew I could not expose him (or me and our children) to this invasion of privacy within the sanctity of our home.

  In desperation, I turned to the manager at Headway House, Colchester, to voice my all-consuming fears and concerns. Her response was simple. "What about the Direct Payments Scheme?" she asked. This was the first time anyone had mentioned it to me and I asked what it was. She explained that it meant that my husband's care package would be costed, but we would then receive cash instead of directly provided services, enabling us to organise our own care arrangements. At last I began to see a window of hope and opportunity. If we were in control of what was happening in our own home, then I could see that it might succeed.

  I contacted Social Services immediately and asked why nobody had told me about the Direct Payments Scheme. The response was astounding. They felt that my husband's care package would be so extensive that it would be have been "too complex" for us to organise. My indignation and stupefaction was intense and brought forth a torrent of questions:

    —  How can anyone make an informed choice if they do not know what the choices are?

    —  What right do other people have to make the decision that this would be beyond our capability?

    —  On what basis was this decision made, especially as this Case Review Meeting had been our first direct contact with Social Services?

  Having made my feelings abundantly clear, the information regarding the Direct Payments Scheme duly arrived. There was excellent support offered from the Independent Living Advocacy (Essex), but, given my professional experience, I was fortunate to require little assistance. We successfully advertised for part time companions/personal assistants and received a good response. Having interviewed six applicants, two were appointed. I then put into place a comprehensive programme of training which included arranging discussion/information sessions; providing reading and video material; organising visits to Homerton and Headway House and organising external training, for example, in First Aid and Cognitive Rehabilitation. The outcome has been extremely positive. We now have two excellent carers who are reliable, knowledgeable and an invaluable support to both my husband and the family as a whole.

  It is interesting to note in the Essex Social Services consultation document "Equal Lives" (September 2000), that they aim to support and develop the principles of independent living through the availability and promotion of Direct Payments. I whole-heartedly support that premise for those who feel it is appropriate for their needs. I only hope that they are beginning to tell people about it!

  I fervently believe that:

    —  The Direct Payments Scheme gives patients and families the possibility of regaining the greatest possible degree of choice and control over their lives.

    —  This scheme should be prompted, explained and made readily available to all those who want access to it


  As my husband's August discharge date grew closer I became increasingly worried that there was still no sign of his wheelchair, despite the fact that it had been ordered by Broomfield Hospital in January. The Occupational Therapist from Homerton had made numerous enquiries, but found the person responsible at Wheelchair Services evasive and unresponsive to her messages, to the point of rudeness. Slowly, an incredible and farcical catalogue of confusion began to unfold.

  The Wheelchair Service claimed that they had already delivered the wheelchair (with an extended left foot plate and high risk seat cushion) to one of the wards at Broomfield Hospital, a signature having been obtained for its receipt. Broomfield Hospital denied this, saying that wheelchairs were always delivered directly to the OT Department and would never be accepted by a ward. The signature was not legible and could not be matched to any their staff. There was not trace of the wheelchair and both sides were denying responsibility. To add insult to injury, my husband had never required a left plate extension anyway, as the knee ossification had been on the right side! Broomfield had only become aware that we had not received a wheelchair when I mentioned it in a paper written and submitted to the hospital in June. Assumptions had been made, but no procedures appeared to be in place to check this!

  The OT at Homerton was grateful when I offered to contact the wheelchair service and Broomfield Hospital directly myself—we hoped our combined voices might bring some influence to bear. It transpired that this had now become a funding issue, since the Wheelchair Services considered the order fulfilled and were refusing to deliver another wheelchair unless Broomfield paid for it. I made it clear that this was none of my concern. All that concerned me was that my husband had the wheelchair that had been ordered for him eight months previously. Within days, a wheelchair arrived, albeit with the extension plate provided for the wrong foot which the engineer was determined to fit because that was what the delivery note said! Fortunately I managed to persuade him otherwise, but only once I had provided him with the telephone number of the OT at Homerton and he had been authorised not to fit it by his office. Another crisis resolved—but with an inordinate amount of unnecessary time and energy spent by Occupational Therapists at both hospitals attempting to resolve the problem.

  It is indefensible that poor organisation, inadequate procedures and concern over funding issues should:

    —  Cause potential distress and inconvenience to patients.

    —  Consume an unacceptability high amount of therapists' time, which could be more usefully spent working with patients.


  In preparation for my husband's discharge we began to draw up a programme for continued rehabilitation. I was pleased when he was accepted for out-patient physiotherapy and occupational therapy at Broomfield Hospital. Although the primary difficulties had been with nursing staff rather than therapists, it was gratifying to see a definite change in approach and attitude. As the Occupational Therapist remarked, she was aware that I had "strong views on what we should and shouldn't do" and was keen to work in collaboration to set up an agreed programme of support. I was delighted. I have never been aggressive or confrontational in my approach, but I have been firm in my beliefs and prepared to make them public for the sake of my husband and others like him.

  It transpired that the level of communication between the various hospitals and my husband's G.P. had been derisory and I was her primary (and sometimes only) source of information.

  Much clearer procedures for establishing communication with the G.P. need to be in place, particularly in cases of such severe injury where the patient and family are likely to need ongoing and extensive support.

  Having provided extensive support for me and my family for ten months, Headway finally met my husband. As part of my husband's rehabilitation programme, it was agreed that he would attend Headway House at Colchester for two days each week, with funding and transport provided by Social Services.


  On my husband's sixth visit to Headway we had a very difficult day when he was collected too early from Headway House and taken back to what would normally have been an empty house. Fortunately, one of our carers had arrived early and was home to meet him, but he was upset, agitated and confused because he had also missed his lunch. Having spoken at length with both Social Services and Headway House, I was assured this would not be allowed to happen again.

  Only a fortnight later, on his tenth visit to Headway, the transport failed to arrive to collect my husband from Colchester at 4.00pm. Nobody contacted Headway to inform them and I was told that the response when they contacted Social Services to ascertain how they could contact the driver and find out what was happening was "I haven't the faintest idea". I was appalled.

  My husband had been due to arrive home by 4.30pm. He eventually arrived home at 7.00pm, having been collected by one of his carers. He was distressed and exhausted, to the extent that he was unable to attend Headway at all on the following day. I was also very upset as I was trying to contend with a demanding day at work, a sick child at home and complex evening care as I had to return to work for essential training that I had organised for that evening. Having had to endure untold stress and emotional strain during the past year, situations like this add to an almost intolerable load. I also had to pay the carer for additional hours and mileage costs, which is a secondary, but nonetheless, important issue.

  I was incensed by this inadequate service. As a result of his brain injury, my husband requires consistency and structure to his day. He is easily confused and becomes agitated and distressed when arrangements do not go according to plan. I had put a huge amount of time, care and effort into planning a detailed and professional care package for him via the Direct Payments Scheme. The only part of this for which Social Services had direct responsibility were the journeys between our home and Colchester, Headway. It is the only part of his care which has failed.

  The experience of brain injury has a devastating effect upon a family, particularly where young children are involved. As a family we have coped because of the strong bonds of faith, hope and love that we share. It is only possible for us to attempt to build a new kind of normality if we are able to trust the people that are helping and supporting us. I had lost all faith and trust in the transport service and was not prepared to place my family in such a vulnerable position again. I decided that I could no longer allow my husband to be transported by Social Services. I can only assume that my letter was received as no further transport has arrived since my complaint was made. However, I have received no acknowledgement, explanation or apology since my complaint was sent almost three months ago.

  I am in the fortunate position of being able to find sufficient money to fund the transport costs for my husband. What grieves me particularly is that there are undoubtedly many who are forced to accept a deficient service because they simply have no alternative.

    —  Transport Services need to be reliable because people depend upon them.

    —  I am appalled that customer care skills can be so poor in a department that is supposed to be providing a "social service".


  Fourteen months have now passed since that dreadful day in October 1999. We continue to climb this dramatic and emotional learning curve, knowing that, in terms of brain injury, these are still "early days". We count ourselves among the more fortunate families, since my husband has made considerable progress and there is quality to our life—albeit a very different life to the one we had before. There are also many difficulties yet to be faced, challenges to be overcome and a gradual dawning of acceptance of this new life.

  I am absolutely certain that my husband has made this progress as a result of three main factors:

    —  His own inner determination and strength

    —  The continued and unshakeable love, support and encouragement of his family and friends

    —  The determination of his wife to gain access to appropriate brain injury rehabilitation services and out-patient provision, supported with information and advice from Headway, the brain injury organisation

  My great concern is that there are many unfortunate brain-injured patients who do not have such an advocate. There are many families who understandably find the intolerable stresses that brain injury places upon them just too much to bear.

  As medical knowledge and technology has advanced an increasing number of people with severe head injuries are surviving. There needs to be a corresponding increase in the provision of staff and specialised rehabilitation facilities so that patients can receive appropriate treatment for their stage of recovery.

  As Headway so eloquently puts it: "A life worth saving must be a life worth living"

January 2001

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