3 Improving care for people with learning
disabilities and challenging behaviour
Improving the funding arrangements for local services
18. The Winterbourne View Concordat set out a strong
presumption in favour of the local use of pooled budgets to minimise
health and social service overlaps, reduce bureaucracy and improve
productivity. This was to cover the additional costs of increasing
local service capacity, as more people with learning disabilities
and challenging behaviour were cared for in the community. However,
only 27% of health and social care learning disability related
budgets were pooled. The Department was disappointed that so few
areas had done so. It confirmed that it would now look at mechanisms
in the Care Act to use the Better Care Fund as a way to mandate
pooled budgets and present its recommendations to the next Government
at the earliest possible opportunity, and certainly by the Summer
of 2015. The Department said that this would include working through
whether a statutory mechanism was the right approach, whether
it would achieve the intended objectives, or whether it would
have unintended consequences.[22]
19. The Department considered that giving people
with learning disabilities individual health and social care budgets
would also strengthen its actions to improve community services.
NHS England agreed that personal budgets for people with learning
difficulties would make a difference, as their choices and those
of their families, would be a driver to expand community based
services. NHS England told us that there were about 6,000 people
with learning disabilities who were in receipt of NHS-funded continuing
health care and who, as of now, had a right to a personal health
budget. Over 90,000 people with learning disabilities were already
receiving personal budgets for social care from community providers.
NHS England would also pilot, from April 2015, integrated personal
commissioning, which would bring together health and social care
budgets and which would also include people with learning disabilities.
NHS England expected that, following evaluation of the pilots,
the right to personal budgets for health and social care would
be embedded in learning disabilities services from 2016-17.[23]
20. At June 2014, for around half of people with
learning disabilities commissioned by the NHS in mental health
hospitals, their local authority did not know that they might
transfer to their area on discharge from hospital. Despite this,
the Department's considered that, for patients other than those
who had been in mental health hospitals for a long time, the responsibility
for meeting the costs of community services for people with learning
disabilities remained with local authorities on their discharge.
It believed that it should not be a local authority's expectation
that when a person was admitted to a mental health hospital, the
person was 'somehow off their books', or that it no longer had
a responsibility for them. The Department assumed that the local
authority would probably have previously met the costs of the
patient's community care before their admission to hospital.[24]
21. We were concerned about the Department's assumption
that local authorities would simply take on responsibility for
additional very expensive community care for those of whom they
had no knowledge, and for whom the local authorities received
no compensatory funding. We considered that passing funding responsibility
to local government could result in a further failure to discharge
people with learning disabilities from mental health hospitals.[25]
22. NHS England did, however, recognise that for
people with learning disabilities who had been in mental health
hospitals for a very long time, it would need to provide a 'dowry'
or 'funding endowment', which moved with the patient on their
discharge, to enable the clinical commissioning group and local
authority to commission appropriate and sustainable community
based care. NHS England considered this could be needed for around
20% of people in mental health hospitals-those who had been inpatients
for more than five years. It felt that for patients who had been
in mental health hospitals for six months or fewer, the costs
of their community based care following discharge from hospital,
would be borne directly by the clinical commissioning group and
local authority to which the patient was discharged.[26]
Improved rights for people with learning disabilities
and their families
23. Our preliminary panel witnesses told us that
people with learning disabilities, and their families, had too
little influence on decisions affecting the patient's admission
to hospital, their treatment and care, and their discharge. They
considered that measures to transform care services for people
with learning disabilities should begin with a patients' rights
based approach. We heard that families of people with learning
disabilities had been horrified at being told that their relative
was being sent to a mental health hospital, which could be a great
distance away. Families might have very little ability to secure
their relative's discharge from hospital, especially if the patient
has been Sectioned under the Mental Health Act, and the patient
might then remain in hospital for several years. This is despite
the right under the Mental Health Act, to appeal a Section, and
the right to receive help from an independent mental health advocate.[27]
24. We also heard that that the process of Sectioning
a person under the Mental Health Act could occur during a crisis
situation for the person and their family and carers. The process
could be stressful, distressing and confusing. Witnesses told
us that the Act was being used to Section people with learning
disabilities when a community place for them, such as residential
care or supported living, had failed. Sectioning was then used
as an easier route to admit them to mental health hospitals. However,
once a person was admitted under a Section of the Mental Health
Act, we again heard that they could stay as an inpatient for a
very long time. We heard that a review of how the Mental Health
Act was being used in practice, for Sectioning people with learning
disabilities, would be a necessary part of examining and strengthening
patients', and their families', rights to challenge decisions
on their treatment and care.[28]
25. Families clearly need better support in finding
out about their rights and how to exercise them, particularly
when they were facing a stressful situation, including if their
relative is being inappropriately admitted to hospital.[29]
Sir Stephen Bubb proposed that providers of community based care
services for people with learning disabilities should also have
the right to propose alternatives to a patient's admission to
a mental health hospital. He considered that this would then help
a patient's family offer their preferred alternative to their
relative's admission to hospital, and to drive changes in how
treatment for people with learning disabilities was provided.[30]
26. The Department and NHS England agreed that a
more rights-based system was needed. They told us that the next
step in transforming the care of people with learning disabilities
was to enshrine their rights in law. The Department considered
that there was also an inequity in power between mental health
hospitals and the families of people with a learning disability,
and that this had to be rebalanced. The Department and NHS England
recognised that people with learning disabilities wanted a right
to work, a right to education, a right to make their own decisions,
and a right to have somewhere that they could call their own home.
The Department believed that further progress in transforming
care would be made only when it combined the range of managerial
actions, with giving people with learning disabilities more rights
to challenge decisions on their treatment and care. It intended
to address this within a Green Paper.[31]
22 Qq 60-62, 71-81 Back
23
Qq 18, 38-40, 82 Back
24
Qq 45, 47, 63; C&AG's Report, Figure 4 Back
25
Q 47 Back
26
Qq 63-65 Back
27
Qq 5, 7-8, 10-11; Detention under the Mental Health Act, Factsheet, 'Rethink Mental Illness', NHS England, February 2014 Back
28
Qq 4, 7-8, 12 Back
29
Q 8 Back
30
Q 10 Back
31
Qq 17, 38, 46, 66 Back
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