Select Committee on Health Minutes of Evidence


APPENDIX 20

Memorandum of Evidence from Continuing Care Conference (CCC) (CC 33)

1.  INTRODUCTION: ABOUT CCC

  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 options.

2.  WRITTEN MINISTERIAL STATEMENT, 9 DECEMBER 2004

  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 CHANGES WILL BUILD ON THE WORK ALREADY UNDERTAKEN BY STRATEGIC HEALTH AUTHORITIES IN REVIEWING CRITERIA FOR NHS CONTINUING CARE AND DEVELOPING POLICIES

  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 self-fund.

  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 and unfairness.

  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 policy—which 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 savings.

  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 REVIEW OF PAST FUNDING DECISIONS HAS SUCCEEDED IN ADDRESSING THE NEEDS OF PATIENTS WRONGLY DENIED NHS FUNDING FOR THEIR LONG TERM CARE

  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 needs.

  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 eligible—he 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 DEVELOPMENTS ARE REQUIRED TO SUPPORT THE IMPLEMENTATION OF A NATIONAL FRAMEWORK

  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.

February 2005





 
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