Responding to demand for retrospective reviews
Delays in carrying out reviews
4. A week after the publication of our report, the Department of Health asked strategic health authorities to review whether continuing care criteria in use since 1996 were compliant with the law and to determine how many people might have been wrongly assessed under non-compliant criteria. It had already asked, in August 2002, each strategic health authority to bring together into a single set the former health authorities' criteria for determining eligibility for NHS funding for continuing care. In May 2003, the Department asked authorities to carry out by 31 December 2003 retrospective reviews of eligibility for funding in cases where it might have been wrongly refused. In addition, later in 2003, the Department commissioned an independent review of progress with continuing care in nine strategic health authorities (Continuing health care: review, revision and restitution - published by DoH on 9 December 2004).
5. Although we had indicated in our report in February 2003 that 'significant numbers of people and sums of money are likely to be involved', the large scale of applications for retrospective review and restitution was unexpected. In view of this, the Department of Health extended the deadline for dealing with them to 31 March 2004. We passed on to the Department of Health early concerns that we had heard from NHS bodies about difficulties in meeting both the December and March deadlines. However, on both occasions the Department assured us that their information showed the targets would be met and we passed on these assurances to complainants, their representatives and Members of Parliament. It became evident that the Department's information was unreliable. It was very disappointing that in September 2004 the Parliamentary Under Secretary of State for Community reported that only 57% of the retrospective reviews (6,644 out of 11,655) had been completed by the extended deadline of the end of March 2004. This prompted a flood of complaints to us - mainly from frail, elderly people who were themselves carers or from their relatives - about delays in receiving a decision. Furthermore, it now seems unlikely to us that all strategic health authorities will have completed their reviews by the end of December 2004, a full year after the original deadline. In all, since February 2003 we have received nearly 4,000 complaints about continuing care funding. We are disappointed to have been told by the Department that they have not collected central statistics relating to the retrospective reviews since July 2004 and, at present, have no plans to do so. They could, therefore, be unable to round off the exercise by giving final figures for the number of cases reviewed and their outcome. This is unfortunate and we recommend that the Department keep an overview of the exercise and use the information from it to inform their handling of future claims.
6. Many of the complaints about continuing care that we received in 2003 and in the early part of 2004 concerned delays in carrying out retrospective reviews of eligibility. In the main, those strategic health authorities with the largest number of cases had the greatest difficulty completing them on time. It is clear that some primary care trusts took a long time to get started. For example, one primary care trust did not send out forms on which to apply for a retrospective review until nearly a year after we published our report in February 2003. They then said that the reviews would only take place 12 weeks after the completed forms were received. In other places, there is evidence that NHS bodies took too long to recruit, train and convene review panels. In one case, a primary care trust said in June 2003 that they were waiting for DOH guidance before they could proceed, although this had been issued the previous month. A number of others said that they were awaiting instructions from their strategic health authorities.
7. We recognise that, in some cases, primary care trusts had to wait for the relevant records and evidence to be made available. We also understand that a proportion of requests for review were not received, or at least recorded, until after the December 2003 deadline for completing reviews had passed. In many places, though, the number of claims simply surpassed the local capacity to deal with them.
Mrs Z first complained to the Ombudsman on behalf of her late mother, Mrs H, in March 2003. That same month we wrote to the strategic health authority and, as the DoH had asked, invited them to hold a retrospective review. Despite reminders from us, a review did not take place until April 2004. The delay was caused, in part, by a delay in receiving nursing records from Mrs H's nursing home, but there was evidence that the authority and the trust, to whom they had passed the request for a review, did not take any effective action on the case during 2003, apparently due to the number of requests for review received. (The authority was one that those that had the highest number of requests, according to Department of Health figures.)
Delay and failure to communicate
In March 2003, Mr N wrote to the strategic health authority applying for a refund of nursing home fees for his late mother, having noted the publicity following the Ombudsman's special report the previous month. The authority wrote back to Mr N later that month saying that the case had been transferred to the appropriate trust, which had been asked to take action.
In April 2003 the trust wrote to Mr N saying that they were unable to proceed with his claim until they had received guidance from the Department of Health.
In October 2003 Mr N complained to the Ombudsman that he had heard nothing from the trust. We made enquiries of the trust which then replied to Mr N in November, saying that they would send him a questionnaire to facilitate the processing of his application. The trust said that a review would take place within 12 weeks of their receiving the completed form. Mr N did not receive the questionnaire until 20 February 2004, 11 months after his first approach, and returned it within a few days. A review panel did not take place within 12 weeks and once again we made enquiries to find out what was happening.
It transpired that the nursing home which had been caring for Mr N's mother had closed down, and the trust had failed to follow up its original request to the home for its nursing records. A review panel was finally arranged for the end of September 2004.
8. It was clear to us well before December 2003 that large numbers of people were affected and that capacity at a local level to deliver the extensive and detailed reviews required was severely stretched. It was evident that NHS bodies needed support and guidance to enable them to carry out the reviews promptly and thoroughly if the deadlines were to be met. Yet adequate training for assessors and panel members was delayed or minimal in many primary care trusts and strategic health authorities.
9. The Department provided extra funding for the purposes of restitution (£180 million), but this did not cover the administrative resources needed to set up the retrospective assessment process.. Furthermore, it was not until well into 2004 that the Department's Recovery and Support Unit was mobilised to address the situation in those strategic health authorities that were lagging behind. The delays resulted in our receiving a large number of complaints from claimants and their representatives, including Members of Parliament, whose expectations had been raised by the Department's deadlines.
10. In view of the delays in completing reviews, and after discussion with the Department of Health and the Healthcare Commission, from 12 July 2004 we exercised our discretion to look at complaints which had been through all the stages of the local review processes, rather than expecting complainants then to go through the full NHS complaints procedure. This was mainly to avoid prolonging the delay for many frail, elderly complainants who had already had to wait long enough. But it was also in recognition of the level of independent, specialist assessment of the claim that had already been given by the trusts and/or authorities in their review procedures. Many primary care trusts told us that they had exhausted the assessors available locally and could not identify people competent to undertake a further independent review. To deal with this additional work we set up a dedicated continuing care unit of investigators to concentrate the considerable knowledge and expertise that we have developed in this area.
11. We recommend that the Department support training and development to expand local capacity and ensure that new continuing care cases are assessed and decided properly and promptly.
12. Despite the large numbers of people who did come forward, we would like assurance that sufficient efforts have been made in all cases to locate everyone who might be affected. Our February 2003 report recommended that strategic health authorities should '.attempt to locate any patients in their area who may wrongly have been made to pay for their care in a home.' We know that some strategic health authorities made extensive and comprehensive efforts to locate patients and their relatives. From the evidence available to us, we are not able to say with certainty if these efforts have been replicated throughout the country. We note, however, that new cases for retrospective review are still coming to light. The Department's own independent review also raises this issue:
'The approach to case finding in most SHAs had relied in the first instance on cases presenting themselves for review, and on those who had come forward as a result of the advertising and publicity of the restitution exercise. It was widely recognised that there could be a further task still to be completed that would entail seeking out cases. There was a concern that many of the most disadvantaged cases might have been overlooked by a process that had favoured the articulate and well-informed' (Executive summary).
13. We recommend that the Department of Health should therefore seek reassurance that strategic health authorities have made sufficient efforts to trace and contact those potentially affected.