Memorandum by the Health Service Ombudsman
for England (CC 23)
BACKGROUND
1. The long term NHS funding of patients
(usually elderly and disabled, often, but not exclusively in care
homes with nursing) is usually called "continuing care",
and results in all social and health care needs being paid for
by the NHS, without any form of means testing.
2. In my special report to Parliament in
February 2003 (NHS Funding for Long Term Care, HC399) I recommended
that strategic health authorities and primary care trusts should
(in summary):
— review the criteria used by their
predecessor bodies, and the way those criteria were applied, since
1996, taking into account the Coughlan judgment, Department of
Health guidance and my findings; and
— make efforts to remedy any consequent
financial injustice to patients, where the criteria, or the way
they were applied, were not clearly appropriate or fair.
I also recommended that the Department of Health
should:
— consider how they can support and
monitor the performance of authorities and primary care trusts
in this work;
— review and clarify the national guidance
on eligibility for continuing NHS health care and include definitions
of the terms used;
— consider being more proactive in
checking that criteria used in the future follow that guidance;
— consider how to link assessment of
eligibility for continuing NHS health care into the single assessment
process and support the development of reliable assessment methods.
3. The Department agreed to all but one
of the recommendations made in that report. That recommendation
was that the Department should review their guidance to strategic
health authorities on eligibility for continuing care.
4. According to the Department's figures,
nearly 12,000 retrospective reviews have been carried out, with
20% of these resulting in partial or total NHS funding for the
patient. However, in my Annual Report for 2003-04 (HC 703) I expressed
disappointment that there had been considerable delays in carrying
out the reviews and that, despite the development of new eligibility
criteria for the 28 strategic health authorities, I still had
concerns which I planned to raise with the Parliamentary Under
Secretary for Community, Dr Ladyman. I also said that I intended
to publish a further report to Parliament later in 2004.
FURTHER REPORT
5. In my further report, (NHS Funding for
Long Term Care: Follow up report HC144 16 December 2004) I reported
that, although there had been considerable effort locally to retrospectively
review cases fairly and robustly, there had been considerable
problems. Complaints to me revealed:
— significant delays in completing
retrospective reviews and a lack of capacity to deal with the
number of cases;
— difficulties of interpretation of
eligibility criteria (and the Department of Health's 2001 guidance
on which those criteria were based) to decide who should qualify
for full funding;
— confusion about the distinction between
continuing care full funding and "free" nursing care—particularly
at the higher band;
— flaws, often systemic, in the way
retrospective reviews were carried out; and
— delays in making restitution payments
to those found eligible for continuing care full funding.
6. In more than half of the cases my Office
examined we found that the assessments had not been carried out
properly. The problems included poor quality clinical input to
both assessment and decision making, inadequate documentation,
failure to consider changes in a patient's health care needs over
time, and lack of involvement of, and poor communication with,
patients, carers and relatives.
7. Our conclusion was that, while there
had been a lot of hard work at local level with examples of good
practice, and the Department of Health had instigated some improvements
in respect of `new' continuing care cases, these developments
fell short of the level of guidance and support that was needed
by healthcare professionals in this difficult area. We recommended
that the Department of Health needed to lead further work in six
key areas by:
— establishing clear, national, minimum
eligibility criteria which are understandable to health professionals
and patients and carers alike;
— developing a set of accredited assessment
tools and good practice guidance to support the criteria;
— supporting training and development
to expand local capacity and ensure that new continuing care cases
are assessed and decided properly and promptly;
— clarifying standards for record keeping
and documentation both by health care providers and those involved
in the review process;
— seeking assurance that the retrospective
reviews have covered all those who might be affected; and
— monitoring the situation in relation
to retrospective reviews and using the lessons learned to inform
the handling of continuing care assessments in the future.
8. I met Dr Ladyman to express my concerns
and shared a copy of my draft report with him. I was pleased when
on 9 December 2004 he announced to Parliament that he had commissioned
a "new national framework for the assessment for fully funded
NHS continuing care".
9. I publicly welcomed this initiative and
was encouraged when Dr Ladyman wrote to me saying that he believed
his statement went beyond most of the recommendations in my report
and that his officials intended to work closely with mine so that
the national framework could benefit from our experience.
Further Developments and Subsequent Events
10. To this end, on 17 December 2004 my
officials spoke at a special meeting (called for and hosted by
the Department of Health) to brief strategic health authorities
continuing care leads. We now plan to meet with strategic health
authorities to discuss the problems that we have identified from
our caseload of complaints. The purpose of these meetings is twofold:
— First, to make sure that relatives
and carers who complain to us with justification about flawed
retrospective review processes and consequent unsafe decisions
have their cases properly reviewed or reassessed in a fair and
transparent way.
— Secondly, to use these subsequent
robust reviews as a way of encouraging strategic health authorities
and their trusts continuously to improve their standards in future
continuing care cases. This should ensure that the majority of
disputes are properly and fairly dealt with and should obviate
the need for complainants to bring large numbers of justified
complaints to my Office.
11. To date these visits have been generally
welcomed by strategic health authorities and have proved very
useful. They have provided a forum for frank and open discussions
and we hope that they will help the health authorities to develop
an approach to continuing care that will ensure that past and
future cases will be assessed quickly, fairly and robustly. Officials
from my Office and the Department of Health have met to share
these experiences and explore the principles that we see as essential
to the national framework. We are also planning a further three-way
meeting to include strategic health authorities' continuing care
leads. Further, at a meeting with the Department on 11 February
2005, it was confirmed to my officials that the new national framework
would include national minimum eligibility criteria, backed by
suitable assessment tools, guidance and Directions.
Other important issues
12. In addition, there are two further issues
which in our view need to be considered by the Department.
13. First, the resolution of the widespread
confusion and misunderstanding of the relationship between "free"
nursing (particularly at the RNCC high band) and fully-funded
continuing care. Following advice from Counsel, we wrote to the
Department at the beginning of February 2005 to set out our understanding
of the issues and to seek urgent clarification. We have an increasing
number of complaints about this issue. Carers and relatives claim
that, given the similarity of the wording used in both sets of
criteria, those who have been found to qualify for high band free
nursing must also meet the criteria for full funding. We are awaiting
a reply from the Department.
14. Secondly, the other theme in current
complaints to me is about redress, where it is accepted that funding
was wrongly withheld. My principle is that the individual, or
their estate, should be put back in the position they would have
been in had the maladministration not occurred. I am currently
considering a number of cases where the complainants appear to
be able to substantiate claims that a house was sold, or a job
given up, to care for someone, as a direct result of the failure
to give continuing care funding at the appropriate time. I am
also looking at the interest rate which is used by trusts when
paying restitution, and at the appropriateness of botheration
payments, where the handling of the complaint by the trust or
the authority has been particularly poor. These issues are being
taken forward with the Department, rather than at authority or
trust level.
What should be in the National Framework?
15. From our experience, to produce a robust
National Framework for continuing care, the Department needs to:
— create clear, comprehensible, national
eligibility criteria;
— develop a nationally validated approach
to the assessment and documentation of a patient's health care
needs to ensure fairness and consistency and enable reasonable
and robust decisions to be made about eligibility for continuing
care, which can stand up to challenge and scrutiny;
— provide agreed definitions of criteria
used to make decisions, such as "intensity"; and "complexity",
or, better still, find improved wording to replace them —perhaps
through the use of plain English;
— clarify the situation where health
care is given by a non-NHS practitioner, such as a nursing home
employee, private carer or relative;
— review and make recommendations about
what is an appropriate decision making body (panel) for eligibility
decisions for NHS continuing care;
— agree a national standard and a set
of agreed competencies for NHS continuing care assessors;
— set up nationally organised training
for, and assessment of, NHS continuing care assessors;
— initiate a thorough review and secure
national agreement about the distinctive differences between "nursing
care" and "personal, hygiene and social care" for
the purposes of qualifying for NHS continuing care;
— examine the relationships and differentials
between NHS continuing care criteria and funded nursing care criteria
and review similar phraseology within both;
— review and clarify eligibility in
relation to degenerative conditions which inevitably lead to death
(eg Alzheimer's Disease); and
— establish a national communications
strategy to help all sections of society understand the criteria
for NHS funded continuing care.
Conclusion
16. I very much welcome the Department of
Health's broad commitment to taking the lead in developing national
criteria for NHS funding for continuing care and that this Committee
is contributing to the development of this important area of public
policy through its current Inquiry. I hope that the experience
and expertise of my Office in investigating problems with continuing
care over many years will be welcomed not only as making an important
contribution to the establishment of a robust, fair and open system
which will earn the confidence of patients, carers and professionals
alike, but also in drawing a line under the retrospective review
exercise when I am satisfied that patients and carers have received
reasonable funding decisions based on robust assessments.
Ann Abraham
25 February 2005
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