Conclusions and recommendations
1. In
its forthcoming review of the system of NHS continuing care funding,
it is vital that the Government draws on the views and experiences
not only of NHS bodies and local authorities, but also of patients,
carers and professionals. We therefore recommend that the Government's
review of continuing care funding arrangements take the form
of a full, formal public consultation, in line with Cabinet Office
recommendations. (Paragraph 21)
2. In recent years,
in inquiries addressing as diverse a range of issues as the health
needs of children and young people, inappropriate use of NHS acute
beds, elder abuse and care for the terminally ill, this Committee
and previous Health Committees have time and again been confronted
by the problems caused by the current division of systems for
funding and providing health and social care. Nowhere are these
problems more evident than in the area of funding for continuing
care, an area in which confusion has reigned for over ten years,
resulting in frustration for health and social care professionals,
and suboptimal care and financial hardship for some of our most
vulnerable populations. (Paragraph 40)
3. In practice the
boundary between the two services has shifted over time, so that
the long term care responsibilities of the NHS have reduced substantially,
and people who in the past would have been cared for in NHS long
stay wards are now often accommodated in nursing homes. This means
that responsibility for funding long term care has to a major
extent been shunted from the NHS to local authorities and individual
patients and their families. (Paragraph 41)
4. The question of
what is health and what is social care is one to which we can
find no satisfactory answer, and which our witnesses were similarly
unable to explain in meaningful terms. The policy division between
health and social care lags far behind practice in a number of
areas, where, born of necessity, health and social care professionals
have commendably developed innovative joint working practices.
We welcome these developments and the use of pooled budgets and
other flexibilities, which are beginning to break down the division
between health and social care. (Paragraph 42)
5. Debates about where
the boundary between health and social care should be drawn have
been complicated by further debates around the definitions of
'personal care' and 'nursing care', and have led to the absurd
position where carers providing complex medical support for their
loved ones are denied fully funded continuing care at home because
they are not registered nurses. If the same care were to be given
by a registered nurse, it would be regarded as nursing care and
fully funded. Barbara Pointon, caring for her husband who has
Alzheimer's, argued that in her experience the struggle to establish
who should fund care has eclipsed the crucial issue of the patient's
actual needs. She also emphasised that from a patient and carer
perspective, 'care is care is care, whether you are talking about
someone who is unable to dress themselves or about palliative
care'. (Paragraph 43)
6. We are convinced
that so long as there are two systems operating according to quite
different principles, the highly controversial issue of which
patients qualify for fully funded NHS care, and which have to
contribute some or all of the costs of care, will remain. We strongly
recommend that the Government remove once and for all the wholly
artificial distinction between a universal and free health care
service operating alongside a means-tested and charged for system
of social care. (Paragraph 44)
7. During this inquiry,
we have heard renewed calls for personal care to be provided free
of charge, which would be a way, to use the Minister's phrase,
of resolving many of the difficulties arising from the boundary
between health and social care "at a stroke". However,
the Minister stated categorically that the Government will not
reconsider this option, arguing that it would be financially "unsustainable".
While we have not focussed in depth on this issue during this
inquiry, we dispute the Minister's argument that funding personal
care would be financially "unsustainable". It is clearly
for Governments to decide their own spending priorities - however,
we maintain that with political will, the resources could be found
to fund free personal care. Moreover, the costs of providing free
personal care need to be offset against the current administrative
costs associated with policing the divide between health and social
care. We recommend that debate in this area is informed by the
outcome of the Kings Fund study into future social care resource
requirements which is currently being undertaken by Sir Derek
Wanless. (Paragraph 52)
8. We recognise that
a unification of all health and social care responsibilities would
require primary legislation which is not an early prospect, and
we have therefore framed our subsequent recommendations about
continuing care in the context of to-day's statutory provisions.
However, we urge the Government to accept our central conclusion
that removing the structural barriers between health and social
care is the only way to satisfactorily address these, and a great
many other problems, in the long term. (Paragraph 53)
9. The
NHS has an urgent need for a single, universal set of national
eligibility criteria for continuing care to end the inequities
and inconsistencies that have developed as a result of the current
system. It is unacceptable that in one part of the country a person
with a specific set of care needs would be assessed as qualifying
for fully funded NHS continuing care, while a person with identical
needs living in a different part of the county would be deemed
ineligible, and would potentially have to fund all or part of
their care from their own means. We welcome the Minister's aim
of addressing this problem, and we welcome his conviction that
the current review will result in the development of a single
set of national eligibility criteria. However, he was not able
to give us a categorical assurance on this point. A single, national
set of eligibility criteria for NHS continuing care is crucial
to ensure coherence and equity, and we urge the Government to
ensure that a single set of national eligibility criteria is developed.
(Paragraph 69)
10. We
are concerned that it has taken so long for the Department to
recognise and address the problem of inconsistent continuing care
criteria. We recommend that the Department should consider its
own internal monitoring processes with a view to detecting problems
like this at an earlier stage in future. It also seems that an
opportunity was missed, at the time of the Ombudsman's report
in February 2003, for the Department to start work on developing
an urgently needed single set of national criteria. The Department
ought to have acted sooner to develop a single set of national
criteria, and we recommend that this work be completed as a priority,
within the 12 month timescale indicated by the Minister.
(Paragraph 74)
11. Our
evidence indicates that current eligibility criteria for NHS continuing
care are heavily weighted towards physical needs, to the detriment
of mental health and psychological needs. It strikes us as perverse
that, under current criteria, in the case of Alzheimer's Disease
the further a person's illness progresses, the less likely they
are to qualify for continuing care funding, even though they in
fact need more intensive health care to maintain a good quality
of life. Sufferers from other progressive and degenerative conditions,
including Motor Neurone Disease and Parkinson's Disease, are similarly
disadvantaged. We recommend that the Government's new national
eligibility criteria be designed explicitly to give the same weight
to mental health and psychological needs as to physical needs.
(Paragraph 84)
12. It
is not appropriate to produce separate eligibility criteria to
cover different client groups. However, eligibility criteria
must be able to adequately meet the needs of all those who need
continuing care, whatever their age or diagnosis, and the Government
should take account of this in developing its new national eligibility
criteria for NHS continuing care. (Paragraph
88)
13. It
seems to us a nonsense that two separate systems exist for assessing
eligibility for fully funded NHS continuing care and for nursing
care contributions as fundamentally both systems are doing the
same thing, which is determining NHS funding of ongoing health
care. We have heard from several authoritative sources, including
the Ombudsman, that the criteria for assessing eligibility for
continuing care and the high band nursing care are virtually indistinguishable
from each other, causing considerable problems for those charged
with applying them, and raising the possibility that, in fact,
everyone who qualifies for high band RNCC should also automatically
qualify for fully funded continuing care.
(Paragraph 96)
14. We
are surprised that these two distinct policies regarding the funding
of ongoing health care have been developed by the same Department
with seemingly no regard for ensuring coherence or harmony between
the two systems. We urge the Government to put right this confusion
and end unnecessary bureaucracy immediately. It seems to us that
the simplest way to achieve this would be to integrate the two
systems. If the two systems continue to co-exist, there must
be clarification of the interaction between them, and we recommend
simplification of the banding system. (Paragraph
97)
15. The
Minister has stated that all 28 sets of eligibility criteria now
operating are legal and in line with current guidance. However,
we have received evidence which calls this in to question, arguing
that in fact, the Coughlan case itself would have failed to meet
the requirements of current eligibility criteria, either for NHS
continuing care, or for high or even medium band RNCC, as Pamela
Coughlan's condition was stable and predictable, although she
had high level nursing care needs. Mackintosh Duncan solicitors,
who specialise in continuing care law, told us that of the many
sets of eligibility criteria they have seen which are currently
being used, "none of those criteria are in accordance with
the Coughlan judgment". These are very serious charges which
the Government must answer. The new national eligibility criteria
must be explicitly Coughlan-compliant, ensuring that all people
whose primary need is for health care will receive fully funded
care, even if this requires a fundamental revision of the definitions
and terminology of the criteria. (Paragraph
103)
16. The
Single Assessment Process (SAP) was intended to integrate assessment
processes across health and social care, and to ensure that all
older people were given a high-quality multi-disciplinary assessment
of their needs. However, we are not convinced that implementation
of the SAP system is progressing as swiftly and effectively as
the Minister implied. We recommend that the Government takes steps
to ensure that this is addressed. (Paragraph
110)
17. We
were shocked to hear that some patients and their relatives are
not offered any form of assessment for continuing care, and subsequently
do not receive assessments because they are simply unaware that
continuing care funding exists, and that they might be entitled
to it. We do not think that the onus should be on patients or
their relatives or carers to request an assessment for continuing
care:- all patients with continuing needs should be offered an
assessment automatically, before they leave hospital. In developing
its national framework for continuing care, the Government must
take steps to ensure that this happens. It should also give consideration
to establishing a system whereby every care setting, including
NHS acute hospitals, primary care and private nursing or residential
homes, should have a nominated individual whose responsibility
it is to proactively identify all those who may need a continuing
care assessment and notify the appropriate PCT, which should have
a duty to arrange for an assessment (or re-assessment) within
a specified timescale. (Paragraph 116)
18. We
have recommended the development of a single set of national criteria,
which should go some way towards ensuring that patients have the
same entitlement to continuing care funding in all parts of England.
However, a single set of eligibility criteria are only part of
the solution, because, as our witnesses pointed out, even when
using the same SHA criteria, inconsistencies have still emerged
with different PCTs interpreting the same eligibility criteria
differently because they have followed different assessment processes.
It is therefore imperative that the Government underpins its national
criteria with a national standard assessment methodology, building
on current best practice to develop a universal, standardised
assessment process backed up by a single set of documentation
which will be applied by all Strategic Health Authorities, PCT's
and NHS Trusts, in conjunction with local authority social services
departments. (Paragraph 122)
19. In
developing its national assessment framework, we recommend that
the Government should include clarification about which professionals
should be involved in carrying out assessments for NHS continuing
care. In line with the Ombudsman's suggestion, the Government
should ensure that there are sufficient numbers of trained staff
to carry out assessments promptly and professionally. The Government
should also develop a national training programme, which all those
involved in carrying out assessments should complete.
(Paragraph 128)
20. The
national standard assessment methodology must include flexible
provision for regular review, placing a specific requirement on
the organisation providing care to trigger a review whenever needs
change. At the very minimum, all patients should be reviewed every
year, but there must be scope for reviews to be triggered as soon
as they become necessary, and for these to be carried out flexibly
and promptly. (Paragraph 132)
21. Patients,
carers and relatives should have automatic access to detailed
information about the assessment process, both before it begins,
and during the process itself, and we recommend that the new national
standard assessment methodology includes specific requirements
in this area. Not only is full information-sharing crucial to
ensuring transparency, and useful in helping patients, carers
and relatives understand how decisions were arrived at. Patients,
carers and relatives can also provide a failsafe system for ensuring
there are no inaccuracies in assessments, as they are likely to
have a better understanding of their own or their loved one's
condition than any professionals. (Paragraph
136)
22. Despite
the Department of Health's guidance that assessment for continuing
care must always be carried out first, and RNCC assessment only
carried out if the patient is deemed to be ineligible for NHS
continuing care, the evidence presented to this inquiry indicates
that in practice RNCC assessments are often carried out first,
with the result that patients may not get the funding they need
because they have been inappropriately assessed through the RNCC
framework alone. In the light of our previous recommendations
concerning the confusion and overlap between the separate systems
for continuing care and RNCC, the Government must develop an integrated
system which will eliminate much of this confusion. The national
standard assessment methodology must, provide detailed guidance
on how, and in what order, patients needs should be assessed.
(Paragraph 141)
23. Monitoring
is vital to ensure consistent decision-making in continuing care
assessments. However, monitoring systems do not yet appear to
be very well developed, and we urge the Government to ensure,
as part of the national framework for continuing care, that robust,
consistent systems are put in place throughout the country to
monitor the implementation of the new national eligibility criteria
and the national standard assessment methodology.
(Paragraph 144)
24. Much
of our evidence concerned PCT review and funding panels, and indicated
that, where these exist, decisions are often driven by budgetary
concerns rather than patient need, and clinical assessments are
overturned without explanation. This should not be allowed to
continue, and we are pleased that the Minister confirmed that
the role and constitution of funding panels will be addressed
within the forthcoming national framework for continuing care.
While there is clearly a need for PCTs or SHAs to review local
decisions to ensure consistency and quality of assessment, we
question the need for a PCT panel to validate all eligibility
decisions, as we are concerned that panels will serve a gatekeeping
function to manage demand on PCT financial resources. Eligibility
criteria and related assessments must be based on the needs of
the individual, and must not take account of the financial consequences.
We therefore recommend the new national framework should stipulate
that PCT panels must only be used to assess cases where patients
have appealed against a decision, not as a final process through
which all clinical assessments must be ratified, and that the
membership of continuing care panels should include appropriate
clinical expertise, rather than clinical decisions being made
by Directors of Finance. (Paragraph 148)
25. We
are concerned at the reports we have received from many of our
witnesses identifying significant problems with the retrospective
review process. These included delays, poor communication with
patients and relatives, and lack of Government support and guidance
for those carrying out the reviews. We urge the Government to
ensure that, in any future reviews, lessons are learnt from shortcomings
in the review process identified by the Ombudsman's 2004 report
and the independent review commissioned by the Department of Health.
(Paragraph 150)
26. We
were concerned by many witnesses' doubts that SHAs' review processes
had succeeded in identifying all those who might have been wrongly
assessed, and in particular that publicity campaigns had favoured
the articulate and well informed. When we put this to the Minister,
he responded that SHAs had 'tried' to do the trawl as well as
they could, but that 'this is an imperfect world'. The Government
should have instructed SHAs to proactively search their records
to identify potential cases themselves, rather than relying on
publicity and word of mouth to encourage claimants to come forward.
We would urge the Government to endeavour to continue to identify
people who might have been affected. (Paragraph
163)
27. The
retrospective review process has brought to light serious shortcomings
in the quality of information and record-keeping in assessments
and in on-going care management. Not all records can be kept
indefinitely, and we do not want to impose an intolerable burden
on NHS organisations and care homes. However, clearer guidance
on what should be kept and how long for is clearly needed, and
we therefore recommend that the national framework for continuing
care should provide detailed guidance on this. Because of the
difficulties in obtaining contemporaneous nursing records, we
also recommend that SHAs who are still involved in the retrospective
review process should adopt a more flexible approach to the types
of evidence they will consider, including carer evidence, and
GP and hospital records. (Paragraph 167)
28. It
is beyond the scope of this inquiry to address the question of
whether people wrongly denied continuing care should be given
compensation for house sales and loss of earnings as well as simple
restitution for the actual money they spent. However, the Ombudsman
has raised this as a serious concern expressed in a number of
complaints she has received. We urge the Government to liaise
with the Ombudsman on this issue to attempt to agree a common
position. Where appropriate, complainants should have access to
adequate legal advice. (Paragraph 171)
29. We
recommend that within its review of continuing care, the Government
should take steps to enable continuing care to be delivered more
flexibly than is currently the case. Care should be organised
according to a person's needs, and the funding system should recognise
that an institutional setting is not the only, and may not be
the best, place for these needs to be met. The Green Paper on
Adult Social Care attaches particular importance to the development
of direct payments and to giving people greater autonomy in making
care arrangements. We welcome this, and urge the Government to
consider ways in which the care arrangements supported by direct
payments can be maintained if people are re-assessed as having
health care needs. (Paragraph 175)
30. We
were deeply concerned to hear that the RNCC framework has inbuilt
perverse incentives which reward dependency rather than rehabilitation
and independence. Homes that are able to provide nursing care
which successfully achieves rehabilitation for residents and improves
their quality of life often find that they are penalised, as those
patients then have their RNCC bandings reduced, and consequently
payments to the home are reduced. This fails to recognise that
it is precisely the level and quality of nursing input which enables
individuals to be maintained at a higher level of independence
and that this is jeopardised by reducing the RNCC payment. Conversely,
homes that fail to provide sufficient nursing inputs to improve
the health and well-being of residents will often have them assessed
at higher bandings because of their resulting dependency, which
may in fact reward poor care practices. The Minister told us that
he was "absolutely committed to helping people maintain their
independence". If this is the case, the Government must fundamentally
redesign the RNCC and continuing care funding systems so that
they have inbuilt incentives which reward high quality care rather
than penalising it. (Paragraph 180)
31. Despite
the fact that Ministers have claimed that the value of the RNCC
should be passed on to residents, we have received evidence which
indicates that homes habitually increase their charges to residents
by sums equivalent to the RNCC payments, which leaves the resident
no better off. We urge the Government to take positive steps
to ensure that the value of the RNCC payment is passed on to residents;
it is unacceptable for Ministers to state that this should not
be happening but to do nothing to prevent it.
(Paragraph 187)
32. In
addition to this, we have also received anecdotal evidence suggesting
that if a self-funding resident in a care home becomes eligible
for continuing care, because of current rates of NHS continuing
care funding, the home may face a drop in the fees paid and the
resident may have to move to a different care home, or be asked
to top up the NHS contribution to their care costs. Not only does
this present huge upheaval for residents, potentially forced to
move from familiar surroundings to a different care home which
is not their first choice, it could also mean that care homes
are less likely to request continuing care assessments for their
residents (particularly for those who are self-funding) if their
condition worsens. We recommend that, as part of its review of
continuing care, the Government investigates this apparent perverse
outcome of its continuing care policy. (Paragraph
188)
33. The
funding of long term care is a policy area which has, for over
ten years, been characterised by confusion, complexity and inequity.
Despite the considerable investment by Government in recent years
in researching, reviewing and changing systems for the funding
of long term care, it seems we are no closer to a fair and transparent
system that ensures security and dignity for people who need long
term care, and which promotes their independence.
(Paragraph 189)
34. The
artificial barriers between health and social care lie at the
heart of the problems surrounding access to continuing care funding,
and we believe that it will be impossible to resolve these problems
without first establishing a fully integrated health and social
care system. We have therefore recommended, as this Committee
and its predecessor Committees have done on numerous previous
occasions, that the Government removes the structural division
between health and social care. (Paragraph
190)
35. Recognising
that this radical reorganisation will take time, we have also
made a number of recommendations for the Government's forthcoming
national framework for NHS continuing care. The framework should
include: the
establishment of a single set of national criteria for continuing
care, which takes account of psychological and mental health needs
as well as physical, and which must be fully Coughlan-compliant;
the integration of the two parallel
systems for funding continuing care and nursing care, as overlap
is currently causing major confusion; the
establishment of a national standard assessment methodology to
ensure assessments against national criteria are carried out robustly
and uniformly across the country, supported by a national training
programme; the
redesigning of the system for funding continuing care and nursing
care, so that rather than rewarding dependency, as the system
currently does, the system has inbuilt incentives which reward
high quality care and promote rehabilitation and independence;
the introduction of greater flexibility in funding for NHS continuing
care, to enable people to be cared for more easily in their own
homes, where that is their preference.(Paragraph
191)
|
