House of Commons - Health - Minutes of Evidence

Select Committee on Health Minutes of Evidence

APPENDIX 17

Memorandum by Help the Aged (CC 28)

SUMMARY

Help the Aged's central recommendation to the Committee is that the Government's activity to develop a new national framework for NHS Continuing Care should work towards the development of a single set of national eligibility criteria for NHS Continuing Care, supported by a single process for assessing eligibility. There must be reliable and comprehensive information available to patients and professionals to provide clear guidance on assessing needs and the funding of care, encompassing the Single Assessment Process for Older People, the Registered Nursing Care Contribution process, and NHS Continuing Care.

In this submission, Help the Aged restricts its comments to the specific issue of NHS Continuing Care. However, it is not possible to separate the issues relating to NHS Continuing Care from our position concerning free personal care, which remains unchanged. We believe that if the Government committed to providing free care on the basis of need, then some of the difficulties relating to Continuing Care could be significantly alleviated as the debate about which agency is responsible for different aspects of care receded. We would encourage the Health Select Committee to revisit the wider questions relating to paying for care, and to the division between health and social care, in a future inquiry.

Our recommendations can be summarised as follows:

— The national framework for NHS Continuing Care must address older people's access to reliable information and advice.

— There should be a single set of national eligibility criteria for NHS Continuing Care, supported by a consistent approach to the assessment of need and the tools to establish eligibility against the criteria.

— The national framework for NHS Continuing Care should also address the relationship with the RNCC determination.

— The national framework must address the assessment of eligibility, not just the criteria itself.

— The process of requesting a review must be simplified.

— Older people and their families need access to better quality information on their potential entitlement for NHS Continuing Care funding.

— Attention should be given to those individuals who live in their own homes or in residential care whose needs may, over time, develop to meet the criteria for NHS Continuing Care.

— The panels set up to make decisions about cases need to operate in an open and transparent way, and there should be clarity about the role that individual patients and their families can play in the work of the panels relating to their own case.

— Strategic Health Authorities should be encouraged to take a proactive approach to identifying those older people who may already be, or who may in the near future, become eligible for NHS Continuing Care.

— The situation of residents of care homes who are supported by the local authority should be examined as part of the Government's work around the national framework.

— The Government should address the position of self funding residents and those living in independent sector care homes in relation to the current non-application of the Human Rights Act.

— The RNCC bandings must be consistent with the new framework for NHS Continuing Care.

— Consideration should be given to how the system for NHS Continuing Care can be reformed so that it no longer rewards dependency and penalises independence.

— Patients who are eligible for NHS Continuing Care must have real choice in where and how their care is provided.

— Individuals should not be required to "top up" the NHS contribution towards their NHS Continuing Care costs in order to exercise some choices about their care.

— All frontline health and social care staff should receive training on NHS Continuing Care, and should understand their role.

— Stronger links must be made between the Single Assessment Process for Older People and determination of eligibility for NHS Continuing Care.

— Patients and their families should have access to independent advice and support where needed to ensure that they receive what they are entitled to.

1. INTRODUCTION

1.1 Help the Aged's vision is of a future where older people are highly valued, have lives that are richer and voices that are heard. Working with older people, we champion their needs so that they can better their lives. Through research, campaigning and fundraising we develop solutions, drive activities and inspire others to do the same. Our strategy is to attack and remove the major barriers to active and fulfilled later lives, and to concentrate our efforts on those older people most at risk of disadvantage or social exclusion. Our four urgent priorities are combating poverty; reducing isolation; defeating ageism; and promoting quality in care.

1.2 Help the Aged does this by providing a range of direct services in the UK to help older people live active and independent lives, funding vital research into the illnesses and social context of ageing, and funding international activities.

1.3 Help the Aged welcomes the Health Select Committee Inquiry into NHS Continuing Care, which has been an issue of great concern to some of the most vulnerable older people, and their families, for several years. Equal access to care and support is a cornerstone of the National Health Service. Yet access to NHS Continuing Care and the funding that goes with it appears to be anything but equitable.

1.4 Help the Aged has welcomed the steps taken by the Alzheimer's Society in producing the information booklet, When does the NHS pay for care? Guidance on eligibility for continuing NHS health care funding in England and how to appeal if it is not awarded, which goes some way to addressing the widespread confusion and uncertainty about what individuals with complex healthcare needs are entitled to, and how individuals should go about securing that entitlement. The availability of and access to reliable and accurate information is a major concern in relation to access to NHS Continuing Care funding.

2. THE WRITTEN MINISTERIAL STATEMENT ON NHS CONTINUING CARE ISSUED BY DR STEPHEN LADYMAN ON 9 DECEMBER 2004

2.1 Help the Aged has cautiously welcomed the statement by the Minister made on the 9 December 2004. In our view, this statement indicated a subtle yet significant change in the approach being taken by the Government in relation to NHS Continuing Care, and a recognition that the existence of 28 different criteria with different systems for assessing eligibility against those criteria is unnecessarily confusing for patients and practitioners. Help the Aged has for some time stated our belief that there should be a single set of eligibility criteria for the whole country, supported by an effective system for assessing eligibility against the criteria. The Minister's decision to announce the commissioning of a national approach to the assessment for fully funded NHS Continuing Care is therefore, in our view, a significant, if only initial, step in the right direction.

2.2 We have also welcomed the Minister's recognition of the importance of making the process "easier to understand for practitioners and patients alike." There is considerable uncertainty and confusion among older people and their families about what their rights and entitlements to NHS Continuing Care might be. Help the Aged believes that improving older people's access to reliable information and advice concerning NHS Continuing Care is an essential part of the solution to such confusion.

2.3 In our view, the case for a single set of eligibility criteria to be used by all Strategic Health Authorities is compelling. Such an approach would help to avoid a repeat of past mistakes in the steps taken by the NHS to meet its statutory obligations to provide care and support to those with complex health needs. However, a single set of eligibility criteria is only one part of the solution to the challenges posed by NHS Continuing Care, albeit a crucial one.

2.4 The Minister's statement indicates the Government's view that the 28 current sets of eligibility criteria are compliant with the law. Help the Aged cannot comment on whether this is the case. However, we are concerned that even if the criteria themselves are compliant with the law, the systems in place to assess whether an individual meets the criteria vary widely across Strategic Health Authorities. There is certainly anecdotal evidence to suggest that the tools being used in some locations raise the threshold for eligibility even beyond that set out by the criteria themselves. Help the Aged is concerned that the assessment process itself is being used inappropriately as a mechanism to "gate-keep" access to NHS Continuing Care funding.

2.5 Help the Aged is also concerned that the Minister does not appear to have made explicit the connection between the determination of Registered Nursing Care Contribution (RNCC) for residents of care homes providing nursing care and the assessment for NHS Continuing Care funding. Older people and their families are often confused about the relationship between a decision about their eligibility for NHS Continuing Care, and the determination of the appropriate level of nursing care funding to meet their assessed needs. We return to this point in greater detail below.

2.6 In summary, Help the Aged recommends:

— The national framework for NHS Continuing Care must address older people's access to reliable information and advice.

— The national framework for NHS Continuing Care should also address the relationship with the RNCC determination.

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

3.1 Help the Aged acknowledges the steps being taken by Strategic Health Authorities in light of recent attention to the issue from the Government, the Health Service Ombudsman and the media. We also acknowledge the work that has already been done by Strategic Health Authorities to review their criteria and to ensure that they are, to the best of their knowledge, compliant with the legal requirements.

3.2 The streamlining of the local criteria in operation as a consequence of Shifting the Balance of Power from 95 to 28 (reflecting the number of Strategic Health Authorities) was also a welcome move in alleviating the confusion caused by the existence of so many different sets of criteria.

3.3 However, we believe that in many instances, Strategic Health Authorities have concentrated their activities on the local criteria in isolation from the mechanisms with which eligibility against the criteria is assessed. It is therefore vital that the new national framework for NHS Continuing Care also addresses the process of assessment against the criteria, and not just the criteria themselves.

3.4 It appears that many Strategic Health Authorities have responded to requests to re-examine cases brought to their attention by older people or their families, rather than taking a proactive approach to identifying those people who may have been unfairly meeting the costs of their own care. Many older people and their families are often uncertain about whether they have been assessed against local NHS Continuing Care criteria, and indeed what the outcome might have been. Others, by contrast, find themselves in receipt of NHS Continuing Care without a need to request it themselves. Such a contrast in access to an assessment against the criteria is, in our view, unacceptable.

3.5 We have been concerned for some time about the complexity of the system for patients and their families who request a review of their care against the local criteria. The process can seem daunting, and the time and energy required can deter some people from pursuing their potential entitlement. It is not uncommon for the first hurdle to be establishing what the local criteria might be, and how to go about requesting a review. Individuals are often unclear of what their rights are, and often find it difficult to access information on the local process. The need to negotiate a path through such a complex system, of course, is often coming at a time of great stress to the individual and their family.

3.6 The intervention of the Health Service Ombudsman in recent years on this issue has been very welcome, and has provided individuals with a source of additional advice and support. In Help the Aged's view, it is vital to improve access to information and advice and to increase the transparency at a local level around eligibility for NHS Continuing Care. Better communication and openness would go a long way towards removing some of the mystery concerning eligibility, and reducing the pressure on individuals trying to establish whether they are entitled to NHS Continuing Care.

3.7 Help the Aged has also welcomed the steps being taken by the NHS to improve the mechanisms by which new cases are assessed against local criteria, the majority of whom are in acute hospital settings. However, we remain concerned about those individuals who are less visible to the system, such as those in their own homes or in residential care whose conditions may worsen over time to the point at which they may become eligible for NHS Continuing Care. In these circumstances, the individual's chances of being picked up by the system depends almost entirely on those NHS professionals who provide their care, such as general practitioners, among whom the level of awareness about NHS Continuing Care is much lower than those care professionals who are perhaps dealing with such cases on a more regular basis (such as those working in care homes providing nursing care, or in hospital settings).

3.8 Help the Aged is also concerned about the composition of, and decisions made by, panels set up to review cases and to reach a decision about eligibility. We share the concerns that in some instances, these panels appear to be overturning the advice and recommendations of healthcare professionals, including nurses. There is also considerable inconsistency in whether individual patients and/or their families can attend such panels or contribute towards them in any way. In our view, there must be a national approach to the operation of such panels as a matter of urgency.

3.9 In summary, Help the Aged recommends:

— The national framework must address the assessment of eligibility, not just the criteria itself.

— The process of requesting a review must be simplified.

— Older people and their families need access to better quality information on their potential entitlement for NHS Continuing Care funding.

— Attention should be given to those individuals who live in their own homes or in residential care whose needs may, over time, develop to meet the criteria for NHS Continuing Care.

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 Help the Aged acknowledges that the retrospective review of past funding decisions has alleviated the circumstances of those who have subsequently been found to have been wrongly denied NHS funding for their care, and we recognise the scale of the challenge facing Strategic Health Authorities. However, some areas have taken a more proactive approach to the review process than others.

4.2 We remain concerned that many of the reviews were initiated by individuals or their families approaching the Strategic Health Authority to request a review of their eligibility, rather than as a result of the actions of the Authorities in proactively identifying cases. This suggests that there may be large numbers of individuals and cases who are either unaware of their potential entitlement, or who have otherwise been "put off" from requesting a review.

4.3 The position of care home residents already supported by the local authority is also in need of further attention. Help the Aged shares the concern expressed by the Nursing Home Fees Agency and others about the individuals who may have unfairly contributed their pensions or benefits towards the costs of care which should have been provided by the NHS. The review process has, to date, concentrated on those individuals who have been financing the costs of their own care (ie "self funders").

4.4 Self funding residents of care homes providing nursing care, the majority of which are in the independent sector, are also excluded from the protections afforded to others through the Human Rights Act. Help the Aged has highlighted these issues elsewhere,[9] but believes that in the context of NHS Continuing Care, it further underlines the importance of a resolution to the non-applicability of the Human Rights Act to independent sector care homes.

4.5 A decision about an individual's eligibility for NHS Continuing Care is often only taken at a point of crisis, such as admission to and discharge from hospital. The mechanisms by which a person's slow and progressive decline can be closely monitored and measured against the local criteria is much less clearly defined. Help the Aged is concerned that many people may be going unnoticed by the NHS despite becoming eligible for NHS Continuing Care as a result of such a decline, particularly among those older people who may be living in either their own homes, or in residential care. In our view, it is therefore essential for there to be close connections between the implementation of the Single Assessment Process for Older People and eligibility for NHS Continuing Care.

4.6 In summary, Help the Aged recommends:

— The situation of residents of care homes who are supported by the local authority should be examined as part of the Government's work around the national framework.

— The Government should address the position of self funding residents and those living in independent sector care homes in relation to the current non-application of the Human Rights Act.

5. WHAT FURTHER DEVELOPMENTS ARE REQUIRED TO SUPPORT THE IMPLEMENTATION OF A NATIONAL FRAMEWORK

5.1 Help the Aged believes that it is essential for the Department of Health's work on the national framework to take account of the connection between the RNCC determination and the assessment for eligibility for NHS funded Continuing Care. In particular, the Government should re-examine the RNCC bandings to ensure that they are consistent with the new national framework for Continuing Care, and that patients and professionals are clear about the inter-relationship between the two processes. In particular, the relationship between the highest band of nursing care funding and eligibility for NHS Continuing Care is the cause of much confusion among older people and their families, and indeed among some professionals. Some of the cases which were subsequently awarded NHS Continuing Care funding were initially identified as being only eligible for the middle or high band of funded nursing care.

5.2 We are also concerned that the current system rewards dependency, and fails to incentivise recovery or rehabilitation. There is no incentive for individuals, care providers or professionals to improve a person's overall health and wellbeing, or indeed to leave a hospital bed, as the individual would stand to lose an entitlement to NHS funding. In Help the Aged's view, it is only by delivering free personal care that this anomaly could adequately be addressed.

5.3 Similarly, there is no incentive on the part of care home providers to request a review of an individual resident's eligibility against local NHS Continuing Care criteria. Care home providers are a vital part of the system for ensuring that appropriate referrals to an assessment against NHS Continuing Care criteria are made, yet are currently underutilised. In many instances, the level of fees paid by the NHS is much lower than the market rate for a place in a care home providing nursing. A resident who moves from being a self funder to being eligible for NHS Continuing Care may be faced with the prospect of having to move to less expensive accommodation. Moving such vulnerable and frail patients in such a way increases the risk of further damaging their health and wellbeing.

5.4 Help the Aged is also concerned that individuals who are eligible for NHS Continuing Care often do not have the same benefits of choice in where and how their care will be delivered. The Government is committed to extending principles of choice to the health care system, and yet there is a real danger that such choice may exclude those with continuing healthcare needs. We are deeply concerned about the prospect of individuals being expected to "top up" fees which are over and above what the NHS would pay in a care home. Such a situation would simply replicate the existing inequities that affect large numbers of local authority funded residents in care homes.

5.5 The Health Service Ombudsman has highlighted the issue of training for health and social care staff in recognising the signals that an individual may now be eligible for NHS Continuing Care. Help the Aged supports this recommendation, and believes that comprehensive training must be available to all staff working with older people in institutional settings (such as hospitals and care homes) and in the community (such as social care workers, GPs and district nurses).

5.6 Help the Aged believes that it is vital to clarify the connection between the Single Assessment Process for older people and assessment of eligibility against NHS Continuing Care criteria. The Single Assessment Process must ensure that (a) an individual's needs are recognised and assessed, (b) that an appropriate package of care is developed that responds to all the needs of the person (not just their medical needs), and (c) that the care is funded appropriately. The NHS and local councils should be encouraged to strengthen the connections between the two processes, as a means to improving the mechanisms by which changes in a person's condition can be regularly reviewed and monitored, and can where necessary trigger the automatic entitlement to NHS Continuing Care.

5.7 We also believe that individuals and their families should have access to better information, advice and support around their potential eligibility for NHS Continuing Care, as a means to remove the barriers which currently exclude people from the system. Where necessary, this may involve the need for independent advocacy to ensure that a person is able to participate fully in the process, and to ensure that an individual receives what they are entitled to. In some local areas, such services are provided by the voluntary sector, and provide a vital resource in ensuring that older people and their families have access to information and support to obtain their entitlements. This is particularly important in circumstances in which the individual may not have the capacity to pursue their own case.

5.8 In summary, Help the Aged recommends: