Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by Headway Lincolnshire (H26)

  Headway Lincolnshire are submitting this memorandum to the Health Select Committee and hope it will add to the political debate and ensure that Rehabilitation following Head Injury receives the recognition and resources it deserves.

  It will include:

    1.  A resume of the branch and the area it serves.

    2.  Lincolnshire Health Authorities stance on Acquired Brain Injury.

    3.  Factual information on Rehabilitation which is taken from the working draft of the Joint Investment Plan for Physically Disabled Adults 18-65 in Lincolnshire 2001-2004.

    4.  Recommendations for actions by the Government and Health Authorities.

    5.  A brief history of a brain injury survivor.

1.   Headway Lincolnshire

  1(a)  Headway Lincolnshire is a small branch of Headway—the brain injury association—and provides information and support for people with brain injuries, their relatives and carers. It endeavours to increase public awareness and understanding of brain injury. The branch comprises mainly of people who have had a brain injury, family members and sometimes carers who, because of the lack of care, treatment and information they received, want to help others have a better chance of recovery after brain injury. There is a helpline for advice and counselling and monthly meetings where anyone can come and discuss their problems and seek help.

  1(b)  The branch caters for the whole of the area within the Lincolnshire County Council boundaries. It is a very large rural area with a high rate of deaths and injuries from accidents on the poor road systems. Also, as in other parts of the country, the number of people requiring treatment for head injuries from assaults is on the increase. There are no neurological specialists in the county, no head injury co-ordinator, no specialist head injury team of O.T's, physiotherapists, speech therapists, psychologists, social workers etc, no specific rehabilitation facilities for head injuries (in-patient or out-patient) and very few day centres. More lives are being saved in ICU's out of the county with the advancement of medical skills and better trained paramedics and this creates greater need for in-patient constant care and intensive rehabilitation when they return to Lincolnshire.

2.   Lincolnshire Health Authorities Stance on Acquired Brain Injury

  2(a)  Lincolnshire Health Authority state that they have not prepared a strategy for the provisional improvement of acquired brain injury services. They do plan to do so as part of their joint development work with social services and are in the preliminary stages of this work. They have a joint Development Manager funded by both the Health Authority and the Social Services department who is leading this work.

  2(b)  There are no current plans to commit any new or additional resources to acquired brain injury rehabilitation services in 2000-2001 or 2001-2002. The situation is under constant review through the annual priority setting cycle; as with all other Health Authorities they re-assess their investment decisions based on various competing national and local priorities.

  It is very frightening that Brain Injury does not appear to rate very highly on Lincolnshire Health Authorities agenda especially as it is very apparent in the county. When approached they say that it is not a priority on the Government or NHS guidelines and they have to keep in line with them.

3.   Factual Information on Rehabilitation which is taken from the working draft on the Joint Investment Plan for Physically Disabled Adults 18-65 in Lincolnshire 2001-2004.

(3a)  Day facilities for rehabilitation

  Day services are not currently available or accessible equitably across the county. There are insufficient resources in the county to deal with the Rehabilitation Agenda. There is a shortage of therapists within the Community Trusts.

(3b)  Rehabilitation Medicine Services

  Ashby Rehabilitation Centre offers specialised inpatient rehabilitation based at the Old St George's Hospital site and is the only facility of this kind in Lincolnshire. BUT THE INPATIENT FACILITY HAS NO DEDICATED BEDS FOR HEAD INJURY. It has a low ration of physio and O.T. to amount of rehabilitation beds as per Royal College Guidelines.

  Unfortunately this unit has to be relocated. A business plan for the reprovision of Ashby Rehabilitation Centre, with 16 beds at Lincoln County Hospital has been forwarded to NHS Executive Trent. No decision has yet been made on this. Ashby Centre will no longer be able to offer intermittent rehabilitation/respite care.

(3C)  Head Injury Rehabilitation Service

  This service pertains mainly to 16-55 year olds and is part of the Rehabilitation Medicine Service. It includes traumatic and non-traumatic brain injury.

  The current inpatient facility is too distant from acute services and has no dedicated beds for head injury. There is an outpatient Head Injury Clinic once a month in Lincoln and four times a year in Sleaford.

  The community team consists of one session of CNS Physical Disability per week, Community Liaison Occupational Therapist and Neuro-physiotherapist. This is part of their generic role. Neuropsychology includes specialist in neuropsychology. Art Therapist ( four sessions per week for all services). Psychological Therapist in Head Injury for family support (two session per week). There is a lack of structured brain injury care pathway for the whole county. There is a lack of facilities for brain injured patients with severe behavioural problems within the county. A deficiency in service provision for children with brain injury. There are limited day care facilities with links to educational and vocational training.

  There is no head injury co-ordinator but there is currently a research project to evaluate the impact of a H. I. Co-ordinator supporting people following moderate or severe head injury.


  Lincolnshire Health commissioned a Health Gain Programme for Head Injury in 1995 and it was identified that a Head Injury Co-ordinator was the first priority and should be employed in year one of the programme. The role of the Co-ordinator would be to see, assess and help manage patients on acute wards, arrange follow up as needed, develop and co-ordinate plans with a multidisciplinary team in relation to all aspects of rehabilitation and longer term care. The post was never filled because there was no funding available.

(3d)  Residential/Nursing Care

  There is an acknowledged lack of Specialist residential/nursing care for people under 65 across the county. People with Head Injuries can be inappropriately placed.

(3e)  Deaths records analysed by Lincolnshire Health Information Department

  Another startling fact revealed in the Joint Investment Plan was that there were 122 deaths from brain and head injury in the period January 1995—December 1999. How many of these may have been saved if there had been proper specialist care?

4.   Recommendations for Action by the Government and Health Authorities

  4(a)  The first priority is for the Government to recognise Head Injury as a separate disability. At the moment it doesn't fit into any of the categories of disabilities and the local Health Authorities say it is not a Government or NHS priority therefore is not included in their budgets.

  4(b)  Once prioritised the Government could then make recommendations to Health Authorities to include brain injury services in their own right and make funding available. There would have to be a significant financial input because rehabilitation can be very expensive—especially inpatient rehabilitation. Rehabilitation should start at day one after a head injury and is often needed for life to maintain the stability reached by a brain injured survivor. Survivors of severe brain injury have a normal life expectancy.

  4(c)  Were funding available then the Health Authorities would be in a position to engage a Head Injury Co-ordinator who would organise and lead a full multi-disciplinary team of therapists to deliver services to Head Injured people for all aspects of rehabilitation and long term care. The Co-ordinator should also have access for specialist neurological input and be able to work with families and social workers. There will also be a need to support and train nursing staff who will require specialist skills when working with Head Injuries.

  4(d)  There is a definite need for inpatient rehabilitation for some of the most seriously injured who require constant care and rehabilitation after their lives were saved in intensive care. A recommendation would be for a 20-30 bedded inpatient Rehabilitation Unit to be built, as centrally as possible, in each Health Region, eg, one in the Newark area in the Trent Region.

  4(e)  To be cost effective in some cases Head Injury Rehabilitation could be linked with Stroke Rehabilitation. Often the outcome from a head injury and stroke are very similar. In Lincolnshire, as stated in the J.I.P. working draft, under 65 stroke services are very lacking. The review of stroke services in all settings are against the Royal College of Physicians Guidelines. There is a lack of specialist teams that work across acute/community/social services boundaries. Also there is a lack of outpatient/community rehabilitation facility for stroke sufferers with high dependency needs.

5.   A Brief History of a Brain Injury Survivor in Lincolnshire to Highlight the lack of Services.

  A young man was severely brain damaged when his car was stopped dead in its tracks after a large fish van had a blow out, lost control, slewed across the road, overturned, rolled over his car and trapped him inside. He was released and taken by ambulance to Hull R.I. in a deep coma. His life was saved there and he was returned to Lincoln County Hospital after six weeks for constant care and rehabilitation. At this stage he wasn't fully conscious, was incontinent, couldn't sit or stand, was fed by a tube, couldn't speak, was paralysed down the right side, his right eye was closed and he had a tracheostomy tube. He was literally dumped in a surgical ward and the staff didn't have the know-how or time to look after him properly. Between them the family spent at least 12 hours a day looking after him. They taught him to eat, cleaned his trachestomy tubes, saw to his personal hygiene, stopped him pulling out tubes because no restraints were allowed, sat with him for hours keeping him propped up and holding his head up because there were no appropriate chairs. It was recommended from Hull R.I. that he be properly examined and X-Rayed in Lincoln to see if there were any other injuries but this didn't happen. After complaints from the family about the lack of care and attention and the intervention of his MP, the young man was moved to Ashby Rehabilitation Unit. But this proved little better because the majority of the staff had little knowledge of head injury and convenience nursing was the order of the day. Although requested by the family examinations and x-rays were still denied. The family still spent many hours looking after him and tried to encourage him to do things. He started to show signs of awareness and make progress but this was soon stemmed after he was given Haloperidol. He had many undetected injuries and couldn't communicate properly. When the staff lifted his arms to try and help him stand and walk he was in great pain. The only ways he could communicate to stop the staff hurting him were by biting or pulling hair. He was immediately branded aggressive and punished by drugs. He went all floppy, sleepy, incontinent and very weak. After finally noticing the damage the drugs were doing and receiving complaints from the parents they were stopped. Progress then started to be made again but for no reason whatsoever Carbamazepine were prescribed. These had a devastating effect and after many complaints by the parents were changed for Clopixil. The consultant stated that by trial and error they would find a drug that suited him. The young man was very confused, he had hallucinations and thought everyone was going to be killed. After complaining again the parents were given an ultimatum—stay in the hospital and be drugged or take him home. His parents opted to take him home but at this stage he couldn't walk, could hardly talk, didn't think the world was real and had completely lost three years of his memory. The promised follow up of therapies didn't materialise until complaints were made but then they were rationed. The determined parents refused to give up and eventually got more therapy sessions even though it meant a round trip of 45 miles everytime. They also managed to prove to the Social Services that they qualified for help after initially being refused. With much added input from the parents, friends and carers who covered the night shifts the young man eventually believed the world was real—he thought he had died and come back to a second life. He started to walk and talk, he had to learn to read and write again, in fact he virtually had to re-learn everything again. He still has many on going therapies and will need them for the rest of his life if he has to maintain the state he has reached.

February 2001

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