APPENDIX 14
Memorandum by Miriam Lantsbury (H30)
1. INTRODUCTION
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.
2. ACUTE REHABILITATION
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.
3. COMMUNITY
REHABILITATION
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.
4. COMMUNICATION
BETWEEN AGENCIES
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.
5. KNOWLEDGE
OF TBI
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.
6. LOW PRIORITY
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.
7. DEMOGRAPHICS
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.
8. HEADWAY EAST
LONDON
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.
9. CONCLUSION
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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