Memorandum by Leonard Cheshire (H20)
Leonard Cheshire is a leading charity provider
of care, providing 150 services in the United Kingdom alone. Since
1990 Leonard Cheshire has specialised in the provision of community
based rehabilitation for people with Acquired Brain Injury. The
resources and expertise for this client group has grown with the
opportunities available through working in partnership with other
agencies, particularly Social Services, providing up to 80 per
cent of our clients funding, Headway, the NHS and Rehab UK. Our
recent initiatives include setting up the UK ABI Forum and Workability.
We are aware that some of our concerns will
be written as part of the replies from these groups though as
Leonard Cheshire's commitment to the care of this client group
has grown with the appointment of their own National Advisor on
Acquired Brain Injury, it is most important that the following
points be raised:
1. Acute rehabilitation developmentsNHS.
This continues to be patchy and very individualised in each area.
Only a few have involved multi agencies in the strategic planning
for these service developments. "Best Value" therefore
cannot be achieved.
1(a) There is duplication of some acute rehabilitation
services and no resources for the ongoing needs of repatriation
following out of area treatments (OAT's) in the specialised neuro
units throughout the United Kingdom.
1(b) None or few of the resources are invested
for community living rehabilitation, care at home or return to
work. Hence the area of development by Leonard Cheshire.
The NHS and Health Authority solutions are therefore
short term and in the long term the expertise of the acute rehabilitation
they have invested in is wasted and forgotten due to no follow
up rehabilitation/care. It is most important that the Community
services for Brain injured clients are developed at the same pace
as the Acute NHS rehabilitation.
1(c) PCG and PCT representation is rare,
sometimes through lack of planning by the local Health Authority
purchasers, at other times due to the PCG not sending a representative.
On enquiry as to the reason for non-attendance, some GP's state
that this client groups care is too expensive for them to deal
with and have quoted how else their funds can be spent, eg many
hip replacements can be done for the same expenditure. In these
cases, consultation has either ceased or has been done by postwith
records of only 20 per cent replies before HA decision on re-allocation
If the resources for commissioning of services
for this client group are to be community based within the PGC's
and PCT's, which appears to be the trend, then they must take
specialist advise from all providers, not just the local NHS hospital
Trust, as they cannot make informed decisions and choices without
this type of input.
2. Joint workingNHS, DHSS with voluntary
bodies. Leonard Cheshire has 21 cases of spent research, papers
for cases of need etc and development initiatives within the last
2(a) In the majority of these cases the local
NHS Trusts have not worked jointly with Leonard Cheshire following
presentations of data for ABI cases of need or, have initiated
research which Leonard Cheshire development team have taken up
and then they have ceased to communicate or action, thereby Leonard
Cheshire has lost monies but more importantly, specialised resources.
2(b) It is against all guidelines for allocation
of resources, new service development initiatives, NICE and the
National Service framework recommendations, to duplicate services;
raise services without joint working considerations on onward
placements and their funding. This raises many disagreements and
a huge strain on the Continuing Health Care NHS monies or the
Continuing Care Social Services monies. Often treatment is delayed
through the non-agreement to fund further rehabilitation once
a person has passed the recovery stage of rehabilitation.
Effective Guidelines are needed for working
a joint funding criteria between Health and Social Services for
this particular group of Brain injured clients. Strong Guidelines
and recommendations are also needed to involve voluntary/charity
services that specialise in this area, so relieving the burden
of actual service delivery.
3. Social Services and Care Management struggle
to find competent care agencies to take on the necessary care
at home for this client group. There are many failures as agencies
that place the lowest bid are given the task of care. There are
cases of no or ineffectual support by social services care management
who themselves do not have managers with the necessary knowledge
to understand and therefore support this client group.
3(a) The SS care management departments are
equally frustrated that there are very few agencies that are competent
in the specialised care of the brain injured client at home. Many
agencies provide young or inexperienced carers who cannot cope
with the challenges they are faced with in the delivery of care
to the brain injured client. The carer is unsupported through
training or reference to specialist advice. Many carers leave
and packages fail.
3(b) This break down can result in the client
being cared for by an ill prepared family or, and when this breaks
down, the client being placed in a nursing or residential home.
These placements are over 70 per cent inappropriate, as in many
areas the only available resources are elderly residential or
nursing home. Leonard Cheshire has provision for specialist residential
care for this client group and access to training for all carers
working with brain injured clients. But the services have to bear
the cost of this specialised training.
It is recommended that financial provision for
specialised training by any care agencies taking on the care of
brain injured clients, be a compulsory factor in the bids/tender.
Thus Social Services and other purchasers can
establish a realistic cost for a package of care that truly benefits
the long-term results of rehabilitation for these clients. At
this point it is easy to hypothesise that this will place an additional
cost to the bids. However, with careful working of the VAT and
other similar ring-fenced monies, the additional cost could be
To conclude, rehabilitation services for brain
injured people are not available to all who would benefit. The
development of services is going ahead in the acute area of rehab,
promoted by the Medical Consultant led regional neuroscience services
or rehabilitation services (as interpreted through the recommendations
of the working party paperManagement of patients with Head
injury, June 1999).
There is little collaboration though much is
lip services only, with non-statutory sectors and this cannot
help but lead to the medical rehabilitation bias. It is well researched
that this client group has continuing needs that benefit most
from a community based rehabilitation programme in a social model
of care. In many cases throughout the world, teams are therapy
led, or have specialised advisors for trained carers who implement
care up to and including a return to employment or return to education.
Leonard Cheshire continue to work hard as an
organisation to promote the needs of this client group to all
agencies though the responses by some statutory bodies has been
slow or disappointing and we feel that action on our highlighted
statements would be beneficial to service provision as a whole.