We reported in February 2003 on problems with the process for assessing eligibility for NHS funding for long term, known as continuing, care. Our investigations found that local criteria for determining eligibility for funding might have been over-restrictively or poorly applied by NHS bodies. Some disabled, frail or elderly people, who were in fact eligible, had therefore been denied funding of their health care and accommodation by the NHS and had paid for means-tested services arranged by their local authority. We recommended that primary care trusts and strategic health authorities, which had taken over from the former health authorities, should trace those people who might be affected, review their circumstances and where justified make restitution, and that the Department of Health should guide and support them in that work.
Responding to demand for retrospective reviews
Following our report, the demand for re-assessment was greater than anticipated. The Department of Health assured us that the reviews would be completed by 31st December 2003, but it was clear well before that date that there would be a backlog and the Department eventually extended the deadline to 31st March 2004. They later reported that by that date only 57% of the retrospective reviews (6,644 out of 11,655) had been completed and we understand that some NHS bodies might not have completely cleared the backlog by the end of 2004. Since February 2003, we have received nearly 4,000 complaints about continuing care, most of which were initially passed back to the strategic health authorities to review and resolve locally.
Local capacity to deal with the demand for retrospective reviews was severely restricted in places, contributing to considerable delays in starting on them. The Department of Health has stated that the NHS expects to pay a total of £180 million in restitution. However, it expects the strategic health authorities to find the administrative resources needed for the reviews out of their own budgets. Adequate explanations of the purpose of the reviews, and training for assessors and panel members, was either patchy or non-existent.
Despite the large numbers of claimants, we would like reassurance from the Department that sufficient efforts have been made to trace all those who might have been affected.
Reviewing and developing eligibility criteria
We recommended that strategic health authorities should review the criteria used in their areas since 1996 (when written criteria were first required) for compliance with the law as it stands and with national guidance. We also recommended that the Department of Health should review its guidance, making it much clearer who is eligible for funding.
They did not do this but asked strategic health authorities to complete the task of integrating the former health authorities' criteria which applied across their areas. This was a difficult task carried out in parallel with the retrospective reviews and required considerable effort to integrate several often-diverging sets of criteria from the former health authorities.
The processes of criteria revision and retrospective review have led to a greater understanding of continuing care and of the factors that determine eligibility. However, in the absence of revised national guidance there remain difficulties of interpretation and confusion about the distinction between continuing care funding and 'free' nursing care. This may mean that there is still scope for some people to be disadvantaged. We believe there is a compelling case for establishing clear, national, minimum criteria for determining who is eligible for continuing care funding.
The process of retrospective assessment and review
In April 2003 the Department of Health issued a suggested procedure for carrying out the retrospective reviews. Some primary care trusts were unaware of it, local expertise in continuing care was sometimes limited and support from the Department was often lacking. Many NHS bodies made considerable efforts to carry out the reviews robustly and fairly. But the complaints to us show that there was significant variation in the way NHS bodies approached reviews and that in some cases they were poorly carried out. Particular problems include:
- Assessment methods: in the cases we have seen the quality of clinical assessments and of decision-making has been very variable. We recommend that there should be nationally accredited assessment tools and good practice guidance to assist healthcare professionals in applying eligibility criteria;
- Panel procedures and documentation: membership of panels has varied considerably, decisions have been taken without the necessary clinical input and the quality and availability of relevant documentation has been limited;
- Variable communication with, and involvement of, patients and relatives: some NHS bodies have made considerable efforts to communicate effectively throughout the process. Others have done less than the bare minimum, for example sending one-paragraph rejection letters with little reasoned explanation of decisions; and
- Restitution: some recent complaints have revealed delays in making agreed payments.
Conclusions and recommendations
Most NHS bodies have made considerable efforts under difficult circumstances to make restitution to patients and their families for previous failures to pay continuing care funding. Department of Health figures show that up to 20% of those reviewed by the end of July 2004 have received restitution. And some improvements have been made to procedures for assessing eligibility in new (non-retrospective) cases. However, we do not believe these go far enough and recommend that the Department of Health needs to lead further work in six key areas to improve the national framework for continuing care and its application 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 progress of retrospective reviews and using the lessons learned to inform the handling of continuing care assessments in the future.