APPENDIX 16
Memorandum by the Relatives and Residents
Association (RRA) (CC 25)
INTRODUCTION
This memorandum is submitted by the Relatives
& Residents Association, a national charity established to
promote the interests and welfare of older people in long-term
care and to provide information and advice to their relatives
who support them. The RRA operates a daily advice phone line,
supports local groups of relatives and residents, works with staff
in care homes to improve quality of life for residents, runs projects
and comments on policy developments affecting older people in
relation to long term care.
EVIDENCE
1. THE MINISTERIAL
STATEMENT ON
NHS CONTINUING CARE—9
DECEMBER 2004
The RRA welcomes the statement by the Minister
announcing that national framework setting out criteria for assessing
eligibility for continuous care will be drawn up. It will go some
way to iron out the already-acknowledged regional inconsistencies
that many people have experienced in the past. However other problems
remain. On the basis of experiences described by callers to the
RRA advice line, there is a widespread lack of correct information
about the complexities of long-term care. Particular concerns
are:
— People remain confused about the
difference between continuing care and the highest band of registered
nursing care.
— There is a lack of clearly expressed
information that people can understand about the eligibility criteria
currently in use.
— Once awarded fully-funded NHS care,
they worry about the possibility of being denied NHS funding on
subsequent reassessment of needs and about the unplanned financial
consequences this might have (leading to fears that patients or
families may be faced with unplanned financial burdens, retrospective
responsibility for payment of fees and/or care home relocation/eviction).
— Health and social services staff
continue to provide wrong information to relatives and residents
about eligibility for continuing care and/or highest band registered
nursing care.
— Although social services departments
are responsible for financial assessments which must be done separately
from needs assessment, some hospital discharge teams, wrongly,
are taking financial circumstances into account at the same time
as making an assessment of needs.
— There is a burning sense of injustice
about the financial burdens experienced by those who narrowly
miss eligibility for continuing care.
2. HOW THE
CHANGES WILL
BUILD ON
THE WORK
ALREADY UNDERTAKEN
BY SHAS
IN REVIEWING
CRITERIA FOR
NHS CONTINUING CARE
AND DEVELOPING
POLICIES
The RRA hopes that the introduction of national
eligibility criteria will provide an opportunity for local authorities,
local care providers and local health organisations to improve
the quality of baseline needs assessments, care management procedures
and record-keeping. However, national guidance (though not national
eligibility criteria) has existed for some time and yet this has
not prevented the inconsistencies and inequities that have arisen.
It is also a matter for concern that the completion of the SHA
reviews has been impeded by poor quality data at local level.
This reflects a fundamental lack of regard for the older people
whose needs were being assessed. The RRA hopes that all relevant
agencies, including the Commission for Social Care Inspection,
the Healthcare Commission and the Office of the Ombudsman, will
take note of these evident failings and take steps to make, or
call for, radical improvements.
3. WHETHER THE
REVIEW OF
PAST FUNDING
DECISIONS HAS
SUCCEEDED IN
ADDRESSING THE
NEEDS OF
PATIENTS WRONGLY
DENIED NHS FUNDING
FOR THEIR
LONG-TERM
CARE
Reports from the Ombudsman reveal the scale
of the injustice that thousands of older people have suffered.
Many of these individuals have died and have not had their wrongs
righted. In other cases, the consequences of the initial assessment
decisions have been so far-reaching that they can never be reversed
even if the older person is still alive. Individuals have been
placed in inappropriate care-settings and denied access to the
sort of health care necessary to meet their needs and at cost
to their longer-term health and welfare. Houses have been sold
and capital has been spent. As well as the financial losses involved,
emotional and other psychological attachments have been broken.
Sometimes family members have been made more vulnerable as a consequence.
Furthermore, the Ombudsman has so far only been
looking at past decisions; the fear is that wrong decisions are
continuing to be made and yet the possibility of discovering them
is negligible. The Healthcare Commission complaints system is
overloaded and complaints about continuing care decisions are
simply not being investigated—yet these are cases which
need to be investigated urgently. Future health care, social and
living arrangements as well as financial circumstances rest on
the assessment decision and where a wrong decision has been made
it needs reversing as quickly as possible. Worse still, the complainant
may be old and unlikely to live for the length of time it takes
to investigate the complaint. As with past cases, the injustices
will never be resolved for those individuals.
4. WHAT FURTHER
DEVELOPMENTS ARE
REQUIRED TO
SUPPORT THE
IMPLEMENTATION OF
A NATIONAL
FRAMEWORK
The following are required:
— Robust training, repeated and updated
regularly, in applying the new criteria for all those health and
social care staff involved in assessment.
— Clear guidance on recording the assessment
decision-making process and outcome to provide an audit trail
should complaints be made.
— Copies of the assessment written
in clear jargon-free language to be provided to users and carers.
— Guidance and training for Healthcare
Commission reviewers to ensure they assess NHS performance on
implementing the new national framework.
— Guidance and training for CSCI inspectors
in ensuring that they assess social services departments' performance
on implementing the new national framework.
— Guidance and training for CSCI inspectors
in ensuring that care homes fulfil their role in monitoring changing
health care needs.
— Active liaison between all agencies
involved in all stages of assessment and review, including the
Office of the Ombudsman.
— Production of information about the
national framework that is accurate, comprehensive and written
in lay terms and is made widely accessible to the general public.
— Evaluation of the implementation
of the national framework.
February 2005
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