APPENDIX 1
Memorandum by Mr Mark Holloway (H3)
This information is submitted by the Acquired
Brain Injury Co-ordinator for East Sussex a post funded by Joint
Finance and based within Headway Hurstwood Park a Day and Outreach
service covering Sussex. I have been in post for two years and
work across the County (pop 750,000) aiming to assist individuals
access appropriate services, inform providers of short comings
and collate information. Since taking up the post I have had 270
people with an acquired brain injury referred to me. My remit
is broader than traumatic injury alone as it includes insult to
the brain caused by sub-arachnoid haemorrahage, meningitis, encephalitis
and hypoxia. These non-traumatic injuries present with very similar
sequelae and hence it was felt by my employers and the funders
that their inclusion is vital.
Prior to taking up this post I have worked with
brain injured people for over ten years in a variety of settings
and locations and am happy to provide the Health Select Committee
with further evidence, either in writing or in person, of the
need for thought out change. I am a qualified Social Worker and
initially began working with brain injured adults in a residential
setting. The advent of Community Care prompted the Local Authority
to close this unit and open community supported living projects.
I worked alongside a small group of brain injured people in the
new unit facilitating community reintegration. It was in this
setting I first began to understand the complex nature of brain
injury and the disjointed and chaotic manner in which it was responded
to. I later left to manage a voluntary sector advocacy project
where I continued to have contact with a sizeable number of brain
injured adults and their families all of whom were struggling
with the services as much as with the injury itself. The following
comments reflect the experience of working with over five hundred
brain-injured people.
SUMMARY OF
SUGGESTIONS FOR
CHANGE
1. Enact the Royal College of Surgeons June
1999 report in to the management of patients with Head Injuries.
2. Consider rehabilitation as a whole from
hospital bed to, where possible, community/work reintegration.
3. Recognise that inadequate long-term care
prevents positive change and promotes the entrenching of negative
behaviour. Recovery from brain injury is a process that requires
management, it is not a position of stasis.
4. Pool Health and Social Services budgets
for the provision of rehabilitation and longer term residential
and community support.
5. Recognise that current practice in terms
of moving people through the system from intensive care to home
is inadequately managed and there are other models of good practices.
EVIDENCE FOR
RECOMMENDATIONS
1. The very definition of rehabilitation
is central to the difficulties faced by brain-injured people and
their relatives. By having too narrow a definition and considering
rehabilitation to be solely hospital/building based the whole
concept of returning to community functioning is missed. Lack
of access to appropriate community rehabilitation requires some
people to unnecessarily access inpatient rehab, some to receive
no rehab and does not permit rehabilitative principles to be carried
over from the inpatient setting to the community. This can create
circumstances whereby functional gains made in a rehab setting
are not carried over and services working in the community are
not given the opportunity to learn and work appropriately.
2. The very nature of brain injury with
its varied and complex sequelae is also central to the difficulties
experienced by brain injury survivors, their relatives, carers
and those of us who work in this field. In times when it is necessary
to fight for any services, lack of initiation, memory problems
and motivational difficulties are often wrongly ascribed as an
unwillingness to engage with services.
3. Once the acute phase following brain
injury has finished there is no overall co-ordination of rehabilitative
services leading to inappropriate discharge, patients remaining
in acute beds or use of other inadequate or inappropriate resources.
4. The number of different possible funding
organisations can lead to no one body taking responsibility for
an individual, assessing their needs and accessing services as
appropriate. The current situation could be described as the antithesis
of seamless. Currently brain injured patients, post surgery, are
scattered around the County to areas of inexpertise. No care pathway
has been defined to help move patients through a system, they
end up in an environment that is unable to make adequate assessments
of need and discussions as to whether a patients fits Health or
Social Care will dominate. Acceptance of the Royal College of
Surgeons report and a pooling of budgets would prevent this from
occurring.
5. Within a General Hospital no individual,
with power, is given the brief of taking brain-injured patients
through the system.
6. General Hospital staff are ill equipped
and trained to take care of and assess patients with an acquired
brain injury. Inappropriate discharges can take place, particularly
in the case of the ambulant patient who is able to vocalise. Psychiatrists
are often ill equipped to make assessments of brain injured people
and their ability to consent to placing themselves and others
at risk.
7. The local NHS resource for rehabilitation
is chronically under funded and ill equipped to deal with many
brain-injured patients. It needs to be recognised that the needs
of brain injured patients for rehabilitation differ from those
with degenerative neurological conditions, amputations etc. The
British Society of Rehabilitation Medicine published a report
in July 1998 outlining the levels of the various therapy inputs
needed for adequate brain injury rehabilitation. Inpatient rehabilitation
without access to community rehabilitation is inefficient.
8. Patients deemed unsuitable for the local
NHS rehabilitation unit may spend many months in an acute setting
whilst funding is sought for a rehabilitative one. In one General
Hospital in East Sussex 16 patients alone accounted for 1,638
bed days in an 18 month period. At costings of approximately £400
per bed per day this is equivalent to an expenditure of £650,000
in an 18 month period for one hospital alone. (Statistics collated
by the East Sussex Acquired Brain Injury Co-ordinator)
9. Services purchased under the auspices
of Continuing Care budget are difficult to access, appear to be
granted (or not) without rigorous justification and are subject
to ending without regard to clinical need. The Health Authority's
process of decision making is not an open one. This leads to feelings
of distrust between Health, Social Services and families, creating
a siege mentality.
10. Community Rehabilitation across the
County is either non-existent, will not accept brain injured patients,
has no psychology input or is over stretched.
11. The outpatient Neuropsychology services
is chronically over stretched. There are quite simply more people
requiring assessments and support than there is time for the valuable
Neuropsychology service.
12. Social Services are unable to make adequate
assessments of people with an acquired brain injury and are constantly
in dispute with the Health Authority as to who is responsible
for funding specialist slow stream residential placements. In
one part of the County Social Services has unilaterally removed
it's input when it perceives a person's needs are predominantly
Health related. Generally speaking Social Services are requested
to become involved at the hospital or rehab unit when a person
is at the point of being ready for discharge. They are then asked
to take responsibility for some extremely expensive long term
placements/services. It is therefore rather obvious that this
process will be characterised by delay as the budget for adult
services is inadequate.
13. As brain injury is a process it is ill
served by current Social Work practice, which is based much more
on a facilitative and reactive model of care and assessment. Timely,
adequate and appropriate support can ensure that this process
of change is one characterised by increased independence and community
involvement. It can quite simply be a question of doing things
with people and not for them. For example it may take six months
to assist someone to learn how to plan and enact a suitable food
shopping regime; the alternative is to do it for them for the
rest of their lives. It requires a proactive and planned response,
it is not worthwhile applying models of care suitable for spinally
injured people. If your difficulties revolve around loss of memory,
planning skills and difficulties with initiation you will need
guiding towards appropriate constructive activity that will enable
you to develop and become less dependent on services. Many services
purchased for people with physical impairments are wholly inadequate
to meet the specific cognitive and behavioural difficulties faced
by people with an acquired brain injury. People may not need someone
to vacuum for them, they may just need reminding to do it. Frequently
these services are then rejected by the brain-injured person who
then has no contact with any service.
14. Many Social Workers respond to the client's
perception of their needs, which is often inaccurate and understated.
I am still experiencing instances where highly dependent people
are reporting to Social Workers that they do not need help and
this information is accepted as if it was accurate.
15. The raising of eligibility criteria,
charging for services and the practice of early case closure also
negatively impacts upon this client group.
16. It needs to be recognised that failure
to provide suitable rehabilitation (inpatient and community) and
inadequate access to appropriate slow stream/community services
enables poor patterns of behaviour to develop and become entrenched
by a brain injury survivor. This is not an efficient use of services
in the longer term and places strain on other budgets such as
mental health, homelessness, police, probation, prison etc.
SUGGESTIONS FOR
CHANGE
It is therefore imperative that change takes
place to the current system. I would respectfully suggest the
following.
1. The Royal College of Surgeons June 1999
report calls for brain injured people not to be left outside of
Neuro setting, even those not requiring surgery. This allows for
expertise to develop and rational criteria formed for accessing
rehabilitation services. The Royal College clearly states that
maintenance of the status quo is not acceptable.
2. Rehabilitation, as a whole, requires
consideration for all eventualities including states of low awareness,
behavioural agitation, physical impairments, community reintegration
employment etc. There is little point providing inpatient rehabilitation
for certain people, outside of their own environment, and expecting
them to transfer this to their home setting. The cost effectiveness
of rehabilitation is difficult to define and the tools used to
measure it must not be too blunt or set within a medicalised framework.
Rehabilitation is about the return to or maintenance of some form
of social functioning.
3. It needs to be recognised that provision
of slow stream services show their efficiency in two ways, firstly
by improvements to functioning but also by prevention of deterioration.
Most frequently private organisations and charities successfully
perform this role.
4. The artificial divide between Health
and Social Care needs exacerbates the very real difficulties presented
by brain injury and can cause a range of problems. Some of these
problems would be cost neutral to resolve, for example over use
of beds in an acute setting against an increase in funding of
rehabilitation beds. If ever there was a case for pooling of budgets
it surely has to be for those with an acquired brain injury. The
current system promotes inefficient use of scant resources, encourages
agencies to try to devolve themselves of responsibility and creates
a climate of short-termism and distrust. In Canada the Toronto
Acquired Brain Injury Network has gone a long way to overcome
some of these difficulties and in Britain budget pooling has worked
for other groups.
5. Responsiblity for key-working a brain-injured
person through the system from the point of intensive care to
successful community reintegration would assist with the process
of rehabilitation. The Nottingham Traumatic Brain Injury Service
does this with some great success and has managed to reinvest
some insurance payment money back in to the system. It is not
possible to perform this role with too many people on a caseload.
I hope this submission is helpful and, as previously
stated, am more than happy to provide further and more detailed
information if requested.
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