Select Committee on Health Minutes of Evidence



  On 21 October 1999, our lives changed irrevocably, when my husband was critically injured in a serious road traffic accident. At that time I knew very little about severe head injury. We began a long and difficult journey, as we started the struggle to come to terms with the injury and its effects. This paper chronicles the strengths and deficiencies of the early months of my husband's treatment and care. It is written in the hope that it may in some way influence and improve the experiences of those who are unfortunate enough to follow in our footsteps.

Initial Injury List

    —  Left frontal haemorrhage and right contusion, requiring craniotomy and evacuation of left frontal haematoma.

    —  Multiple fractures to the ribs, right scapula, clavicle, humerus and acetabulum; fractured and displaced pelvis.

    —  Laparotomy and cardiac arrest.

    —  Pneumothorax, right basal infection and Acute Respiratory Distress Syndrome (ARDS) subsequent to pulmonary contusion and massive blood transfusion.

In-Patient History

    21.10.99—Taken to Accident and Emergency, Broomfield Hospital and admitted to ITU.

    23.10.99—Transferred to Oldchurch Hospital for neurosurgery and admitted to ICU.

    11.11.99—Transferred to B2, Neurological ICU, at Oldchurch Hospital.

    16.11.99—Transferred to ITU, Broomfield Hospital.

    17.11.99—Transferred to B23, Notley Ward (Orthopaedic), Broomfield Hospital.

    29.11.99—Transferred to B20, Custerson Ward (Rehabilitation), Broomfield Hospital.

    28.03.00—Transferred to Regional Neurological Rehabilitation Unit, Homerton Hospital.

Acute Care

  There is no doubt that the acute care and treatment that my husband received at both Broomfield and Oldchurch hospitals was of a very high quality. The skill, care and dedication of the full range of staff undoubtedly saved my husband's life and gave him the chance to make the best level of recovery possible. At Broomfield Intensive Care Unit my experience as a relative was also very positive and I felt involved, well informed and supported. Unfortunately the care of relatives at Oldchurch ITU was far less satisfactory, an issue that I raised with the senior management at the time via a short paper entitled "The Insignificant Other?" (Appendix 1).

  Within intensive care I felt that:

    —  Acute medical care was generally of a high standard.

    —  More consideration should be given to the provision of information and support to relatives.

  As seems to be the case with many brain-injured patients, it was our experience subsequent to the initial acute treatment phase that began to cause me considerable concern.

Acute Rehabilitation

  On his return to Broomfield, my husband was transferred from ITU to an orthopaedic ward. It was soon clear that there would be no orthopaedic intervention and yet he had to remain on the ward for 12 days awaiting transfer to a ward that was considered to be more appropriate. Few of the staff had experience in dealing with patients with a tracheostomy in situ or knowledge of management of patients with brain injury. This lack of knowledge and understanding extended to the handling of relatives. I was told by one nurse "Of course this may be it—as good as he gets". Whilst I was actively seeking information and prognosis, I was traumatised by comments such as this, which were made with inadequate background knowledge and lack of sensitivity.

  My husband was then transferred to B20, which is intended to meet patients' rehabilitation needs. There is a range of professional support for patients, including physiotherapy, occupational therapy and speech therapy, but there is no specialist clinical psychologist. The consultant recognises the lack of specialist provision, but believes that staff have developed some skills in dealing with brain-injured patients. She agrees that resources are limited and the staff-patient ratio is not as high as in a dedicated rehabilitation centre. Within Physiotherapy and Hydrotherapy my husband made steady, positive progress and my involvement was actively welcomed and encouraged.

Staffing Issues

  Resourcing inadequacies soon became clear. Although the ward is loosely referred to as a "rehabilitation" ward, there was obviously a very high proportion of medical cases. It was hard to reconcile the term "rehabilitation" with the death rate on the ward! A number of the nursing staff expressed their frustration at being unable to give patients who required rehabilitation the time and opportunities that they required, for example, encouraging independence in self-care needs. On a number of occasions, long-serving members of staff said that they felt they have been able to give patients much more time and appropriate support when the rehabilitation facilities were at Black Notley, despite the superior facilities at Broomfield.

  Several less experienced members of the nursing staff professed interest in brain injury, recognising and regretting their limited knowledge and understanding. It appeared to me that training opportunities were very limited, particularly for nursing auxiliaries, who have so much responsibility for the day-to-day care and handling of patients. By the time that my husband was transferred, I found that I was becoming one source of information for them, because of my growing and passionate interest in the effects of brain injury!

Dealing with a brain-injured patient

  One of the most frustrating aspects of my husband's care during this period, was the assumption that he had very limited or non-comprehension. This was exacerbated by his communication difficulties, which became significantly worse when he felt tired, in pain, pressurised or stressed. He was regularly spoken to in a patronising manner by staff who failed to appreciate that his difficulties in expressing himself did not necessarily mean that he lacked understanding.

  My husband and I have shared an exceptionally strong and close relationship for over twenty years, and I know every nuance of his behaviour and responses. I also have considerable professional skills, expertise and objectivity that I have gained in my career as a teacher, Special Educational Needs Co-ordinator and Headteacher, which enabled me to make accurate observations and judgements about his condition. I recognise that my emotional state was intensified during this traumatic period, but I frequently felt that my judgement was considered to be unimportant and misguided—that I was a distressed wife who was seeing what she wanted to see. Consequently, I was driven to write two factual, objective accounts to the consultant giving concrete examples to substantiate my conclusions.

  It seemed to me that the validity of my observations was far outweighed by my husband's "performance" on the weekly ward round. It is hardly surprising that this ritual would intimidate a patient who has suffered a severe brain injury—I think that it would intimidate most people! Given that his injury resulted in significant cognitive impairment and expressive language difficulties, I cannot see that firing questions at him in front of a large group of people is an effective way to test his memory and comprehension, although it certainly highlighted his information processing problems. Even one member of staff referred to it as "surviving the inquisition". Two days after one particular ward round my husband still became tearful and distressed about it—his perception and description was that he had undergone "a bollocking from the doctor".

  The effect on my husband's attempts to communicate was profound. On numerous occasions I saw him unable to attract the attention of staff—at that time his difficulties in initiating and sequencing actions meant that he was unable to cope with the nurse call buzzer. All too often, hard-pressed nurses simply didn't have time to notice or respond to his attempts to communicate his needs. Many of the nurses lacked basic knowledge and understanding about dealing with communication difficulties, giving him insufficient time to process and respond to information. As a result he tended to panic, which exacerbated his tendency to perseverate and lapse into echolalia. Finally, he just gave up trying. His emotional state began to deteriorate and he started to withdraw into himself.

  The starkest illustration of the misjudgement at Broomfield of his level of understanding was illustrated when we attended The RNRU at Homerton for an initial assessment. I had explained to my husband the importance of this interview. He was assessed by a doctor who spoke to him calmly, clearly and like a rational human being. It had been so long since we had been treated as a "normal" couple that it felt totally alien! His response was remarkable—but only proved publicly what I had known for some months. No one could doubt the level of comprehension of a man who could:

    —  Say "I'm feeling very positive".

    —  Name the day, year, his location and date of birth.

    —  Count backwards from 30 without hesitation.

    —  Respond to the request to give words beginning with the letter "s" by saying: "Saint—but I'm not one!"

    —  Name a range of everyday items such as "watch", "lapel", "lace" and "ring".

    —  Carry out the instructions given in the physical examination and explain that his fingers were "not flexible on the right hand".

  I watched the growing amazement of the nursing auxiliary who accompanied us from Broomfield. As we left the room she turned to my husband and apologised profusely, saying:

    "I'm so sorry—I had no idea! I promise I'll try to give you more time now."

  He had been on the ward at Broomfield for almost four months—the doctor at Homerton had elicited these positive responses within forty minutes!

  A further example at Broomfield occurred during the two weeks that his urinary catheter was removed. During this time he did not have a single "accident" during the many hours that I was with him on the ward. However, I often arrived at the hospital and found him sitting in wet clothes and he had frequent "accidents" when I was not present. I was convinced that this was as much a question of communication and nursing strategy than continence, but felt I had no choice but to allow him to be re-catheterised given the unsatisfactory management of the problem. It is interesting to note that the catheter was removed within 24 hours of arriving at the Regional Neurological Rehabilitation Unit at Homerton. Staff carried out regular observations to try and establish a pattern and implemented an effective bladder retraining programme to achieve daytime continence.

  I believe that my husband's state of mind at Broomfield was principally preserved by two factors: my daily presence at the hospital and the relationship with his speech therapist, Teresa Eade. She recognised that there were far greater depths of comprehension than might initially be obvious. When I remarked one day that she was very good, my husband's response was "Teresa's not good. She's a bloody godsend". She clearly recognised the value of working with patients with disability as partners and this evident in her practice, professional and emotional support.

Dealing with Relatives

  The consultant and staff repeatedly tried to persuade me to spend less time at the hospital, showing concern for my emotional well-being. However, one of my major concerns was that for the vast majority of the day, my husband would sit in his chair or lie on his bed with minimal stimulation unless I was there to provide it. The response from the consultant was that if I were not there then they would do more! I have a number of difficulties in accepting this argument:

    —  Firstly, having spent months observing the workload and levels of pressure on staff, I wondered from where this "extra time" would originate?

    —  Secondly, during the time that the catheter was removed there were repeated occasions when I arrived at the hospital to find him sitting in wet clothes and, in one instance, unwashed, shaved or dressed at two o'clock in the afternoon. This did not inspire confidence that my presence was unnecessary!

    —  Thirdly, if additional therapy sessions were deemed appropriate these should have been occurring regardless, whether I was present or not

    —  Finally, even given my ongoing and unconditional love, support and time, my husband clearly became very emotionally vulnerable towards the end of his stay at Broomfield. I have no doubt that he would have developed severe emotional and behavioural problems without my concentrated support and involvement.

  I accept that staff need to be cautious in discussing likely prognosis with relatives, since every brain injury is unique and the pattern of progress is impossible to predict with any certainty. However, I found the consultant's tone particularly negative and discouraging. After each "official" encounter with the professionals (at formal meetings or case review), I felt extreme anguish and despair, doubting my own ability to recognise my husband's responses and progress. It took several days and considerable support from my family, friends and Headway to regain my positive but realistic outlook. Despite the extensive experience and self-confidence I have gained as an educational professional, I found these meetings extremely intimidating and traumatising. How much more difficult it must be for those who lack such experience. I found immense comfort, solace and vindication of my beliefs in the power and importance of the family in the article "Faith, hope and love" written by Frederick R Linge, a clinical psychologist, who suffered a severe head injury himself. (Appendix 2)

Family Support

  One of my major concerns was the lack of involvement of any support group for brain-injured patients and their families within the hospital. Prior to my husband's accident I would never have foreseen that I would contact any form of helpline or support association, as I have always been very strong, determined and independent. However, within a week of the accident I recognised my need for information, advice and support and sought this from Headway, the National Brain Injury Association. Their response has been outstanding—both at a national and local level. As a family we have personally benefited from:

    —  Their comprehensive range of leaflets, booklets, recommended further reading.

    —  A telephone helpline giving information, advice and emotional support.

    —  Friendly and helpful staff at "Headway House", Colchester.

    —  A professional counsellor who understands the effects and implications of brain injury.

    —  An art therapy workshop for children who have a head-injured parent or sibling.

    —  Advice about solicitors and seeking compensation.

    —  Support groups for head-injured people, their families and carers.

    —  Access to training about brain injury provided by professional rehabilitation staff.

  I am well aware that Headway (Essex) has sought greater involvement at Broomfield Hospital, but this has not been accepted. I fail to understand why their support has not been embraced. Their aim is simply to provide quality support for people with head injury, their families and carers. I firmly believe that professionals who work in specific areas of medicine do not necessarily fully understand the broad and long-term effects of brain injury.

  The staff as Headway House have a breadth of experience in dealing with the effects of a head injury on the whole family unit. They know the reality of life beyond discharge from hospital, and if family relationships are going to survive the potentially devastating effect of brain injury, they need every source of help that is available. If one Essex Hospital can notify Headway of any head injuries admitted and liaise closely with them, why can't the others? Hospital staff simply don't have the time—and in some cases, the knowledge and understanding—to provide the support that families may need.

  Within the general hospital wards I felt that:

    —  Staff have inadequate knowledge and under-developed skills in dealing with brain-injured patients.

    —  There is a tendency to focus on medical and physical aspects of rehabilitation.

    —  Greater emphasis needs to be placed upon dealing with cognitive, emotional and behavioural deficits.

    —  Relatives require higher levels of information and support.

    —  Headway's knowledge, services and expertise should be recognised, valued and encouraged.

Additional Issues

  My husband was due for his regular six-monthly dental "check-up" whilst he was an in-patient at Broomfield. I was amazed that there is no hospital-based provision for dental care of long-term patients and was very grateful that a visit to a dentist was arranged. However, this entailed a round trip of approximately 20 miles, an ambulance and nurse escort! To add insult to injury, the dentist did not carry out the required treatment and recommended a scale and polish on discharge (which was likely to be at least 6 months later!). Since transferring to Homerton, he has started a programme of extensive gum and hygiene treatment—although, once again this has had to be arranged with a local dentist rather than within the hospital itself.

  Home visits were made by Occupational Therapists from both Broomfield and Homerton Hospitals. There are some interesting parallels to be drawn:

    —  A home visit was undertaken by the OT from Broomfield in isolation, whereas the OT from Homerton accompanied my husband on a home visit within 2 weeks of transfer to the Unit, in order to carry out an effective assessment of his abilities and needs within the home setting.

    —  The OT from Homerton was astounded that my husband had been allowed home from Broomfield without basic equipment such as a commode being allocated. She assessed our ground floor cloakroom as being totally unsuitable for use, since she considered that attempting to transfer my husband to and from the toilet would pose substantial risk to both of us. At this point, I had already managed to cope with home visits of up to 8 hours for a period of 12 weeks—fortunately without mishap. A commode arrived within 24 hours of her referral.

    —  Broomfield Hospital ordered a wheelchair for my husband in January. Five months later it has still not been forthcoming.


  During the past seven months I have climbed a dramatic and emotional learning curve. The challenge will continue as we confront the demands placed on a family affected by head injury. We are among the more fortunate families, since my husband was admitted to the Regional Neurological Rehabilitation Unit at Homerton Hospital a little more than five months after his injury. In two months he has made dramatic progress—emotionally, physically and cognitively. It would be tempting to argue that the reason he has made this progress is primarily due to his "readiness" after injury. However, I would refute this given the positive progress that appears to be made in patients with widely varying levels of neurological functioning within the unit.

  I have experienced first hand the difference that can be made by dedicated and specialist staff who have appropriate skills, attitudes, knowledge and understanding. The staff in the RNRU at Homerton work in challenging circumstances, but the atmosphere within the Unit is overwhelmingly positive, good-humoured and supportive.

  I fervently believe that this is the quality of provision that head-injured patients need and deserve at an early stage of the recovery process.

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