Select Committee on Health Appendices to the Minutes of Evidence


Memorandum by Miriam Lantsbury (H30)


  I am writing in my capacity as Manager of a Headway Day Centre in East London. Headway Houses are the only specialist day care centres for adults following traumatic brain injury (TBI). I want to briefly comment on the following: the lack of acute rehabilitation services following TBI; the lack of ongoing rehabilitation and support in the community, the lack of co-operation between agencies, the lack of knowledge among social services staff, the low priority placed on rehabilitation services due to financial constraints and the particular situation in East London in terms of high levels of poverty, ill health, crime etc.


  The Regional Unit for Neurological Rehabilitation at Homerton Hospital is a 24 bed unit with an average stay of four months. This means that only those with complex cognitive and often physical difficulties have the opportunity for an intensive period of rehabilitation. For those who have severe behavioural problems, rehabilitation services are few and far between and it is certainly my experience that Health Authorities are very reluctant to purchase these services, even though not providing them will often lead to family breakdown and criminal offending. For those whose injury is less severe, there is often no acute rehabilitation offered at all, in fact even today I have spoken to a lady whose husband has had a moderate injury, with a two day period of unconsciousness. He has been discharged home after two weeks, disorientated, having panic attacks and being verbally abusive to her. He has no real idea of what has happened to him and he also has visual and hearing difficulties. This scenario is repeated time and time again, yet with appropriate rehabilitation, the head injured person can make gains and the carers can learn about the injury and make adjustments that will enable them to cope when their relative is discharged.


  Following discharge from hospital there is limited opportunity for ongoing rehabilitation. It seems to be a lottery! The Outreach Service attached to the Unit at Homerton provides multi-disciplinary community rehabilitation, but the service is not even purchased by the Health Authority within which it is based. Various community trusts have community rehabilitation teams but they vary enormously in terms of their knowledge of head injury, how long services are provided for, what their criteria are etc., etc. Consequently the majority of people following TBI are discharged from hospital with no follow-up in place. The Disability Options Team (DOT) in Tower Hamlets is one of the better services I have come across but they are still limited in terms of how long they can provide services and who is actually referred in the first place.


  One of the reasons for the lack of referrals/follow-up is that there appears to be little communication between the different agencies that are responsible for providing care. Again, the lady I spoke to today has essentially been abandoned. She is trying to cope on her own with a husband who cannot be left alone. The hospital do not seem to have alerted the GP to the situation, the GP has visited at the lady's request but has not contacted social services and the lady has rung me in desperation. She has no family, she cannot go to work, she cannot get out to do any shopping or visit the launderette, she is desperate. I have alerted the duty social worker and can only hope that they may be able to provide some assistance, but it will be minimal and any agency staff that are provided to work with them will not have any understanding of TBI. This is not pessimism, this is reality. No one seems to take responsibility for picking up on people following discharge. I know that in Sussex, health and social services have joint funded a Brain Injury Case Manager to follow up everyone who is discharged following brain injury. They follow up the brain injured person and make sure they have information about rehabilitation services, community support services like Headway and access to legal advice when appropriate. It is already highlighting how many people have been falling through the net over the years.


  Acquired brain injury, which includes traumatic brain injury, is not recognised as a separate disability, therefore it is usual that professionals in health and social care are not aware of and have had no training to help them deal with and provide appropriate services for head injured people. When an individual social worker/care manager develops an interest in head injury for whatever reason, they are more likely to investigate appropriate rehabilitation and support services for a client. Generally speaking, people are offered inappropriate services within the mental health, learning difficulties and physical disabilities services. Education is key to changing this situation.


  As I have mentioned already, money is an issue. The demand on health and social services is such that, both acute and ongoing rehabilitation tends to be low down on the priority list. Many people following even a very serious head injury may be fully mobile and able to hold an intelligent conversation. However, their complex cognitive difficulties are hidden, yet incredibly disabling. Relatives and carers often have to battle with the authorities to get their relative the help they require. This is an added burden they don't need when they are trying to come to terms with the devastating situation they are in. It is even more difficult to get specialist rehabilitation, particularly when people have severe behavioural and emotional difficulties. As a society, if we are going to intervene to save life initially, we need to think about making sure that life is valued in the long term and everything possible is done to give back quality of life. For many head injured people, it is quality of life that is sadly lacking.


  It is important to look at demographics when investigating service provision in a particular area. In East London there are many factors that have an impact on all of the above. Hackney, where East London Headway House is based, has the highest stroke rate in the country. There are high levels of ill health, poverty and violent crime. Seventy five per cent of people who attend the Headway House have suffered a traumatic injury, 33 per cent of these are the victims of a violent attack. In the area of East London covered by East London & the City Health Authority, the ethnic population is estimated to be 42.2 per cent of the population although large groups like the Turkish and Jewish communities are still categorised as "white". There are approximately 300 languages spoken across London. It could be argued that the immigrant population of London is more at risk of certain types of injuries. The amount of road traffic is daunting and violent racist attacks are not uncommon. I have observed that when English has been learned later in life, English language skills are often more impaired than the first language following TBI. As far as I know there is no specialist rehabilitation for people in this situation. Rehabilitation services need to be provided bearing all these things in mind.


  At Headway East London we provide a specialist day care service for adults with an acquired brain injury and a monthly support group for brain injured people, their relatives and carers. As the only Headway House in inner London we are covering 13 London Boroughs. Despite very little attempt to publicise our services, demand is very high and for most people this is the only on-going support they receive. We are not offering formal rehabilitation, but what we do could be construed as social rehabilitation. I am constantly amazed at the number of people who have had no rehabilitation services offered or who have had acute rehabilitation with no follow-up. People are left to cope alone, the caring burden falls on the relatives and carers who are not prepared for or supported in their role.


  I wish I could paint a better picture of my experience of rehabilitation following head injury but unfortunately this is the reality. Services are limited, resources are sparse and knowledge is limited. What I should say is that when people are fortunate enough to receive head injury rehabilitation services, they are very good quality. Let's have more of them and more co-operation between all the agencies whose responsibility it is to care for head injured people.

February 2001

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