Memorandum of Evidence from Continuing
Care Conference (CCC) (CC 33)
1.1 CCC welcomes the Committee's Inquiry
into NHS Continuing Care and is pleased to have the opportunity
to submit written evidence to the Inquiry.
1.2 CCC is a broad-based, independent coalition
of commercial, charitable and public service organisations that
have a common interest in improving the care of older people in
the UK based on an equitable and sustainable structure of funding.
CCC has published research on the prevention of dependency in
later life, and genetic tests and long-term care.
1.3 CCC has been acting as an advocate for
managed change since it was established in 1992, as the Continuing
Care Conference. There have been several welcome developments
in policy but substantial gaps remain. As public expectations
and patterns of demand continue to alter on the back of demographic
changes and technological and medical advances, so CCC will continue
to challenge the status quo and promote realisable alternative
2. WRITTEN MINISTERIAL
STATEMENT, 9 DECEMBER
2.1 CCC broadly welcomes the Written Ministerial
Statement by the Parliamentary Under-Secretary of State for Health
(Dr Stephen Ladyman) of 9 December 2004. A national consistent
approach to assessment for fully funded national health service
continuing care is long overdue; its lack has been a source of
great unfairness and exclusion for older people.
2.2 Whilst all the current criteria may
be fair and legal, there is little or no evidence or structured
reporting that they are being used in a systematic manner.
2.3 Most of the work by Strategic Health
Authorities (SHAs) has been ensuring that Primary Care Trusts
(PCTs) undertake reviews of disputed claims for eligibility to
fully funded care.
3. HOW THE
NHS CONTINUING CARE
3.1 It is not evident to CCC members that
Health Authorities proactively seek eligible cases. Their endeavours
have been focussed on people who have claimed and initially been
rejected. CCC does not believe it is presently routine for SHAs
to question whether individuals are eligible for fully funded
care. Therefore such assessments are largely a consequence of
a specific request or of sporadic awareness.
3.2 One of CCC's members reports, based
on the evidence of many cases coming through the member's advice
service, that assessments for continuing care appear often to
arise through a consultant's ad hoc recommendation, rather than
any systematic signposting and that, in some cases, the decision
seems to be based on views about the older person's ability to
3.3 CCC also has concerns about an apparent
lack of audit trails and public reporting regarding eligibility
considerations and decision making.
3.4 CCC continues to seek a national consistent
approach to assessment as a means for improving the present confusion
3.5 CCC has expressed serious concern that
developing new tools will further delay the remedy of present
iniquities and uncertainties. It should now be possible to select
an instrument that will provide reliable assessments. The extensive
international experience should be added to the pathfinder work
of health and social care bodies in the UK. CCC considers that
the internationally-used Minimum Data Set (MDS) is fit for the
purpose and well established; furthermore, it could facilitate
the joining up of health and social care with and through the
national programme for information technology.
3.6 It is wasteful, illogical and overly
complex to maintain the separation of assessment for eligibility
for fully funded NHS continuing care and the assessment processes
undertaken by PCTs to determine levels of NHS continuing support
in the form of the "Registered Nursing Care Contribution
to Care" (RNCC).
3.7 Although we appreciate that the wider
policy consideration does not come within the remit of the Committee's
present Inquiry, we would urge the Committee to consider the benefits
of a single assessment, and the inevitable consequence of not
pursuing such a policywhich is that people confronting
care will continue to undergo several assessments to determine
differing entitlements. This could be remedied by a single assessment
that determined varying levels of health support including fully
funded care. Such an assessment should encompass the complexity
and unpredictability of the health condition and not just its
present intensity/ severity. This approach would also bring clarity
to individual responsibilities for funding personal care, enabling
people to plan for their future and make choices, whether that
be through insurance mechanisms or supplemental payments from
3.8 CCC draws specific attention to the
lack of clarity in distinction between the higher band of dependency
determination for RNCC payment and for fully funded NHS care.
3.9 Regulation and audit of care would be
greatly enhanced through clear assessment processes with commissioners,
regulators and policy makers being able to track trends and outcomes
through the collation of data which would generate information
about activity and outcomes.
4. WHETHER THE
DENIED NHS FUNDING
4.1 CCC is well aware of cases that had
been denied funding and that have been reviewed as a consequence
of the Health Service Ombudsman's intervention and subsequent
reviews. In addition, CCC is concerned about a fundamental injustice
to, and consequent exclusion from funding of, people who were
ineligible at the time of entry into care but who, through progressive
disability, now meet the criteria. People needing care are typically
assessed at a single point in time. If found to be eligible for
fully funded care they are commonly reviewed to ensure continued
eligibility. However, if a person is ineligible for fully funded
care at the point of entry, planned reassessment is exceptional
rather than planned-for. The majority of older people needing
care do so as a consequence of disability arising from chronic
progressive illness, and can be reasonably predicted to meet eligibility
criteria at some point between initial assessment and death. To
illustrate this point we describe two typical case scenarios:
An individual may have a devastating
event, such as a stroke, that leads to an irredeemable dependency
that justifies NHS funded long-term care.
An individual may have Alzheimer's
disease that does not meet eligibility criteria but requires continuous
care for personal safety and well being. As this latter individual's
disease progresses and their condition gradually deteriorates
they will cross the eligibility threshold unseen.
4.2 Reassessment at prescribed intervals
must form part of a policy of assessment. CCC calls for assessment
to be repeated in a structured manner to ensure that eligible
people are able to receive services according to their changing
4.3 The prevailing dependency of people
in Care Homes in England would strongly support the notion that
many people have been, and continue to be, excluded from this
health service provision. CCC asks that the Committee consider
this in the context of the NSF for older people as well as the
basic promise of the NHS. As a further example, one of CCC's members
reports their anecdotal experience from a Care Home of 28 beds.
On reviewing the service users, the proprietor encouraged three
residents/former residents and their families to apply for retrospective
review of their funding decisions (or lack of initial assessment).
The review related only to residents at the home at 2 April 2001.
Of the three:
One (deceased) has had a favourable
decision made in her favour with repayment to family to follow.
One relative has not disclosed whether
they will take up the suggestion that their father could be eligiblehe
was not keen to seek redress, largely because his father had died
and he expressed the view that the "NHS is in enough trouble
at present and could not afford it!"
Another (mother still living) has
had a decision turned down locally, the matter remains unresolved.
5. WHAT FURTHER
5.1 CCC encourages the Committee to support
a statutory requirement for a standard assessment measurement.
5.2 CCC observes that assessment and commissioning
of the health service component of care is vested in PCTs but
that the regulation of care provision is the responsibility of
the Commission for Social Care Inspection (CSCI) and that, to
date, the Healthcare Commission has not been active in scrutinising
assessment practices. This anomaly should be seen in the context
of the burden of cases referred to the Health Service Ombudsman.
CCC recommends that consideration be given to the proposal that
eligibility practices and consequences are monitored, and required
to be monitored, in a structured manner by one or other of the
regulators or through a joint venture.
5.3 The development of a national approach
will require a programme of training and support for staff carrying
out the assessments to ensure competency and public confidence.