Memorandum by Citizens Advice (CC 15)
INTRODUCTION
The CAB Service welcomes the opportunity to
submit evidence to the Health Committee's review of continuing
care. It is clear from our evidence that this issue continues
to be highly problematic and a source of much confusion amongst
patients, their carers and health professionals.
Following the publicity resulting from the Health
Service Ombudsman's report in February 2003, many bureaux reported
clients seeking clarification and further information about how
the report might affect their relative's situation and what steps
they should take. In addition, those bureaux which are involved
in delivering the Independent Complaints Advocacy Service (ICAS)
have undertaken extensive work in helping clients through the
revision and restitution process which followed the Ombudsman's
report and the Department of Health's response.
Since September 2003, Citizens Advice Bureaux
(CABx) in six regions across England have been involved in providing
help, advice and advocacy to people who have had a problematic
experience with the NHS, through the provision of the Independent
Complaints Advocacy Service (ICAS). These ICAS bureaux have dealt
with a total of 96 continuing care cases over this period, 33
of which have been opened since December 2004. There is therefore
no sign yet that the advice and support needs of patients are
declining. Many of the early cases involved clients who had been
pursuing their case for some time and had already completed a
number of the stages in the review process. The more recent cases
more often involve people who are new to the continuing care system.
Through our involvement in ICAS as well as evidence
from the wider CAB network, it is apparent that the issue of NHS
continuing health care funding continues to be problematic. Following
the Health Ombudsman's recommendation, many carers have approached
ICAS bureaux requesting support during the review process of a
patient's continuing health care decision. Evidence from bureaux
suggests that whilst the eligibility criteria for continuing health
care funding remain unclear, there is also wide variation in the
outcomes of the reviews.
There is also wide variation in how NHS trusts
are carrying out the review process of decisions made since 1996,
ranging from proactively contacting patients and their carers
who may be affected, to primary care trusts being unaware that
they should be carrying out reviews at all. It is imperative that
NHS trusts have a consistent approach towards continuing health
care assessments, for both current and reviewed assessments to
be fair and transparent.
Further, it is difficult to see how a truly
patient centred or personalised service can be implemented whilst
the above confusion reigns. If NHS and social service departments
are unclear about what the rules are and how they should be applied,
given their access to NHS knowledge and information services,
patients and their carers are often left in the dark about what
the issues are regarding access to, and funding of care, and so
cannot be empowered to make informed choices. Information for
patients and carers in this area is at best minimal, and at worst,
misleading or non existent.
INADEQUATE INFORMATION
"We find it hard to understand what
is health and what is social care within our own organisations,
and yet we expect the public to understand it!" (quoted
in Continuing Health Care: review, revision and restitution,
Melanie Henwood, Dept of Health, 2004)
It is very clear from CAB evidence that the
information provided to patients and carers on the continuing
care procedures is woefully inadequate. Given the complexity of
the policy and the uncertainly of health care processionals in
how to apply it, this is not surprising. However this is nonetheless
totally unacceptable in such an important area of health care
provision, where the outcome of the decision can make a huge financial
difference to families involved.
Many CABx clients are not only not informed
of what options are available and of the funding arrangements
for each, but they are more often than not, provided with no choices
at all, and merely advised of what the NHS and/or social services
departments have decided—often involving removal of the
patient from his/her home, and being presented with the substantial
costs to patients that this decision creates.
A bureau in the South West report on the case
of a 95-year-old woman who had terminal bowel cancer was partially
sighted, nearly deaf, doubly incontinent and confused. She also
could not move without assistance, and so was also dependent on
others to feed and dress her. She was hospitalised following a
fall and spent three months in hospital. At the end of this time,
the family was informed by hospital staff and a social worker
that the hospital could do no more for their mother, and that
she should be discharged to a nursing home. The family was advised
that their mother should be self-funding. The family was provided
with no advice about how this decision had been made and what
the options were for their mother. They felt that they had simply
been given an ultimatum. The family placed their mother in a nursing
home, but found the whole experience very traumatic as they were
provided with no help or information in finding the home, and
did not receive any advice from NHS or social services.
A bureau in the North West is assisting a family
whose father had become completely dependent following a number
of severe strokes. He is completely immobile, unable to perform
any tasks unaided, unable to communicate and totally reliant on
24 hour nursing care. The family were advised that their father
would have to be placed in a nursing home, and were told that
his home would need to be sold to fund his care. The family received
no information about the assessment process, or even whether their
father had received a continuing health care assessment.
When investigating further, it was revealed that
their father had never been provided with a continuing health
care assessment. A joint assessment between the NHS and social
services had been carried out, resulting in their father being
assessed as being eligible for medium rate nursing care. The family
was totally unaware of this, and had never been informed. The
family has requested a continuing health care assessment and is
awaiting a new decision.
Given the vulnerability of patients and their
carers at a time like this, it is essential that clear information
and advice are available outlining the needs of the patient and
the options available for the patient and their carers in getting
those needs met. In order for this to happen, it is imperative
that NHS and social service personnel, firstly, are clear about
what the care needs of the patient are; secondly, are informed
about what the options are to meet the care needs, and thirdly,
and equally as importantly, recognize the importance of, and are
trained in conveying this information to patients and their families/carers.
Information is also essential if people are
to be able to properly engage with the review process. Again the
evidence is that this has not been the case. Many panels do not
appear to have a procedure to inform patients that their case
is being reassessed, let alone to ensure that they have the opportunity
to attend the hearing, and present their case, supported by an
advocate where necessary:
A client in the North West found out that his
father's case was due to be reassessed at a sifting panel and
asked if he could attend. He was told that he could not; he contacted
ICAS who questioned why the client could not attend. The PCT agreed
that the client could attend with the ICAS caseworker but as the
panel had 32 cases to reassess that day they could not have long
to put their case across. CAB would question whether it is possible
to conduct a proper assessment of so many cases in one day.
In the midst of all this confusion, there are
strategic health authorities doing their best to make sure that
the services they provide are patient centred, and aim to be open
and transparent in their decision making:
A CAB in the London region has been working with
a strategic health authority on a continuing health care review
case. The strategic health authority has developed detailed guidance
in conjunction with primary care trusts and social service departments
in their area on NHS and local authority responsibilities for
meeting continuing health care needs. The document provides information
on both current assessments and issues that may arise from the
retrospective reviews. It provides pen pictures for NHS continuing
health care and joint NHS and social care assessments. The document
has been produced for NHS and social service personnel working
in continuing health care. However, it is also available to the
public on request. The strategic health authority has provided
this document to ICAS in an attempt to ensure that people wishing
to challenge assessment decisions have clear information on which
to base their challenge.
Unfortunately, CABx have found that this type
of approach by strategic health authorities is the exception rather
than the rule.
POOR DECISION
MAKING
Many CABx report fundamental problems with the
adequacy or indeed existence of the initial decision making regarding
eligibility for continuing care. The Government issued new directions
in February 2004 outlining criteria for consideration of eligibility
for continuing care upon discharge from hospital. This procedure
should be followed prior to the RNCC assessment which assesses
the level of nursing care which will be funded directly to a nursing
home. However many ICAS clients have still not received a written
copy of the assessment made. Others have been told that they do
not qualify for continuing care as they have not met the criteria
for the highest level of nursing care. These are two separate
assessments and the criteria for continuing care are not dependent
on meeting the criteria for the highest band of nursing care.
CABx in the North West reported that a primary
care trust was not carrying out a specific assessment, but was
relying on the joint NHS and social service assessment. They stated
that if a patient was assessed as requiring the highest-level
band of nursing care, then NHS continuing health care funding
would be considered. CABx report that many of their clients suffer
from degenerative diseases, which require intensive nursing care,
but are not being considered for continuing health care assessment,
as they have previously had a joint assessment that has located
them in the middle-level band of nursing care.
A further issue relates to where the patient
is living. The guidance for NHS continuing health care assessments
makes it clear that assessments should focus on the health needs
of patients, irrespective of where the care is carried out. However
CAB evidence indicates that this guidance is not being applied,
and that where patients are resident has been used as a criterion
as to their eligibility for NHS continuing health care funding.
A CAB in the South West reported that a primary
care trust had adopted a blanket policy whereby if nurses employed
by a nursing home are caring for a patient, the patient is not
eligible for continuing health care funding. This is irrespective
of the patient's healthcare needs, and the nursing home employing
specialist nurses to provide complex health care. Further, the
CAB reported that there is inconsistency in the application of
the criteria as one nursing home might call in specialist help,
whereas another might already employ specialist nurses to manage
the same conditions; therefore people with the same health needs
are treated differently under the criteria.
A CAB in London reported a client whose aunt
had suffered from Alzheimer's. The PCT took no action fro three
months, after which they referred the case to the Strategic Health
Authority (SHA). The latter decided, on the basis of medical records
which were two years out of date, that she did not meet the criteria
for continuing care because she went into a nursing home from
home rather than from hospital. The case was referred to the Ombudsman.
The diagnosis of the health condition appears
to have a bearing on whether a patient is considered for NHS continuing
health care funding. Although a patient's physical and mental
healthcare needs should be considered at the point of assessment,
CABx report that all too often psychiatric and psychological needs
are ignored. In some cases a shortage of community psychiatric
nurses may mean that none are involved in the continuing care
assessment. This is particularly pertinent for patients suffering
from dementia and other mentally debilitating conditions.
A CAB in the North West is supporting a client
whose mother suffers from dementia. She was admitted to hospital
following a fall and a continuing health care assessment was carried
out. However, the assessment only focused on her physical condition
and healthcare needs, and ignored her psychiatric healthcare needs.
ADEQUACY OF
THE REVIEW
PROCEDURE
Many of these problems have been compounded
for patients because of the complexity and inadequacies of the
review process.
Firstly, as mentioned above, the review process
is often far from patient -centred or transparent, and therefore
patients may have difficulty in accepting that an adverse decision
is reasonable.
A CAB adviser in the south west who accompanied
a client to a review, commented that it felt as if the balance
was firmly tipped against the client. There was no guidance to
help people interpret the criteria so that they knew what were
the key points of their case which they should emphasise. In addition
the local review officer had prepared a written report which was
copied to the eight panel members but not to the patient until
the adviser requested it.
Secondly, the quality of evidence available can be
very inadequate, particularly where a case goes back several years.
There are no requirements on nursing home providers to keep records
which would enable a retrospective assessment of eligibility for
continuing care to be carried out.
A CAB in the North West reported a client who
has been trying to obtain continuing care restitution for her
aunt for the past three years. She came to ICAS when she came
to an impasse with the PCT who had said that, as the nursing home
records had disappeared they did not have sufficient records to
review the case. The ICAS case worker is trying to establish what
records are available such as hospital and GP records but the
PCT seems "disinterested". It seems likely that this
case will go to the Ombudsman.
Thirdly, the full review process can be very
protracted, which prolongs the anxiety and distress for patients
and their relatives. The process can involve panels at both PCT
and SHA. In some cases the SHA may refer the case back to be heard
by another PCT panel if they feel the first one was inadequate.
Fourthly, at its worst, it appears that people
can find their cases batted between the PCT and the SHA where
the two bodies disagree:
A CAB in Lancashire reported a client who was
told by the PCT that as they did not have the arrangements established
for the first review, she should go directly to the SHA. The ICAS
caseworker applied to the SHA accordingly and was trying to arrange
the details of the review. After a few weeks the SHA decided that
they could not review the decision until the PCT had held a review.
The PCT cannot give a date when they will have their procedures
ready.
Another client in different areas of Lancashire
went through all the reviews at the PCT and SHA level where the
panel found in his favour. The PCT objected and under the regulations
was able to request another SHA panel review. The SHA were very
shocked that the PCT would not honour their decision but admitted
to the ICAS caseworker that they could not enforce the decision.
The case has been referred to the Health Service Ombudsman, who
may find in the client's favour but also cannot force the PCT
to make the payment.
SECOND STAGE
COMPLAINTS
Where a person makes a complaint there are generally
two stages to the complaints procedure before the client has recourse
to the Health Ombudsman. If local resolution including access
to ICAS fails to satisfy the complainant the matter may be referred
to the Healthcare Commission. However, the Commission has taken
the decision to fast-track complaints it receives on continuing
care direct to the Ombudsman. This means that people will miss
out on the second stage of the independent complaints process.
We would question whether this position is right in terms of natural
justice.
CONCLUSIONS AND
RECOMMENDATIONS
CAB evidence indicates that decision making
around eligibility for continuing care continues to be one of
the least satisfactory areas of NHS practice. In our view this
stems in part from the complexity of the policy itself, which
has proved difficult to understand and to administer. This has
resulted in poor decision-making by health professionals and lack
of information for patients, leaving many confused and frustrated.
Yet these decisions, which can be very marginal, have huge financial
implications for patients and their families, often running into
hundreds of thousands of pounds.
This is highly unsatisfactory and runs totally
contrary to the principles of the patient-centred health service
which the Government is striving to create. Indeed it is difficult
to find any supporters for the current policy. Certainly it is
clear from Henwood's research (op cit) that many health professionals
are uncomfortable with current provisions and resent the amount
of time spent on assessments rather than on the direct delivery
of health care.
In our view there is an urgent need for a fundamental
review of the legal framework surrounding the definition of and
entitlement to continuing care, in the context of a comprehensive,
inclusive and public consultation. The courts have usefully explored
the principles of existing legislation and providers' obligations,
but greater transparency and clear codification is required to
achieve a fair threshold between NHS and social service functions
in a way that treats the whole person's needs. If the current
distinction between the charging for personal and health care
(which is arguably a false distinction and the root of the problem)
is to remain, then at a minimum, the aim must be to achieve consensus
over the meaning of continuing care which is transparent, fair
and equitable, and easy to administer.
With regard to the terms of reference of this
inquiry, CAB evidence indicates that the review process has had
mixed success in addressing the needs of patients wrongly denied
continuing care funding. Whilst many have benefited financially,
the process has proved distressing and alienating for many patients.
In addition, the quality of decision making has often been poor,
and the lack of information and transparency in the process has
meant that patients have found negative decisions difficult to
accept.
We consider it essential that the "development
of a national consistent approach to assessment" announced
by the Minister on 9 December 2005 includes the development of
a single set of national eligibility criteria, to be applied by
all trusts. These must be transparent and understandable to health
professionals, patients and carers.
In addition these must be underpinned by measures
to improve the procedures by which they are applied, which should
include:
— A nationally produced information
strategy for patients and carers including leaflets and guidance
on how continuing care decisions are made, and how these can be
reviewed.
— Comprehensive training for all professionals
who may be involved in the continuing care assessment process,
including GPs, social services and care home staff.
— Clear requirements on record keeping
for all health professionals including GPs, care home staff and
social services staff. This should include a requirement for periodic
reviews of patients' eligibility for continuing care, in order
to ensure that patients whose conditions vary over time are properly
assessed.
— Measures to improve the timeliness
of decision making where the review process is invoked.
— Where a trust's decision has been
referred to an SHA, the SHA's decision should be binding on the
trust.
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