Select Committee on Health Sixth Report

7  Retrospective review of funding decisions

149. Following the Ombudsman's recommendation in February 2003 that the NHS should carry out retrospective reviews of continuing care funding decisions, according to the Department's figures, nearly 12,000 retrospective reviews have been carried out, with 20% of these resulting in partial or total NHS funding for the patient. The Department of Health has stated that the NHS expects to pay a total of £180 million in restitution.

The Ombudsman's concerns about the review process

150. In a follow-up review published in December 2004, the Ombudsman made several criticisms of the process of reviewing past funding decisions. The first of these was that there had been an inconsistent approach to reviews:

151. The Ombudsman went on to argue that "adequate explanations of the purpose of the reviews, and training for assessors and panel members, were either patchy or non-existent".[124]

152. The Ombudsman also highlighted delays in the process which were caused by insufficient NHS capacity to carry out the reviews within the Department's initial timescale. In oral evidence, Trish Longdon, the Deputy Ombudsman, told us:

    We were concerned that we were misled as to the timeliness of reviews - and, indeed, we then asked complainants to rely on those commitments that were given. So we share your concern that commitments were given and we therefore then said to a complainant, "You should go back to your SHA and it will all be completed by …." - December/April/July - and therefore we are very, very concerned that we had assurances on which we relied which affected people.[125]

153. According to the Ombudsman, "local capacity to deal with the demand for retrospective reviews was severely restricted in places, contributing to considerable delays in starting on them."[126] Age Concern also told us that where people had been awarded a retrospective award, there have sometimes been problems with delays in the payments being made.[127]

154. Another key concern about the retrospective review process centres on the lack of communication with patients and relatives:

    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.[128]

155. Citizens' Advice gave a very worrying example of the difficulties faced by patients seeking restitution:

    A CAB adviser in the south west who accompanied a client to a review, commented that it felt as if the balance was firmly tipped against the client. There was no guidance to help people interpret the criteria so that they knew what were the key points of their case which they should emphasise. In addition the local review officer had prepared a written report which was copied to the eight panel members but not to the patient until the adviser requested it.[129]

156. We are concerned at the reports we have received from many of our witnesses identifying significant problems with the retrospective review process. These included delays, poor communication with patients and relatives, and lack of Government support and guidance for those carrying out the reviews. We urge the Government to ensure that, in any future reviews, lessons are learnt from shortcomings in the review process identified by the Ombudsman's 2004 report and the independent review commissioned by the Department of Health.

Has every case that should have been reviewed been identified?

157. In addition to inconsistency, delays, and poor patient involvement in the retrospective review process, our evidence suggests that all those potentially entitled to restitution may not, in fact, have been offered a review. This difficulty stems from the fact that, rather than proactively trawling their records for people who might have been wrongly assessed and making contact with them, SHAs relied on local publicity campaigns to encourage people who might be entitled to a review to contact them.

158. The independent review quotes a respondent as saying that "the publicity machine has worked extremely well for those who know how to use it and how to write letters".[130] A similar comment was made by the Royal College of Physicians of Edinburgh: "We would echo the experience that the articulate and intelligent are more likely to obtain 'free' care through their advocacy and those who are most disadvantaged are least likely to benefit from the review system."[131]

159. Denise Gilley of County Durham and Tees Valley SHA told us that her organisation had used local advice agencies, and also that in her area word of mouth and local networks had worked well:

    We did have one instance where somebody who was a regular attender at the local working men's club then told everybody about the payment, and the primary care trust in Easington were then contacted by the club's secretary, who asked if we would like to look at all of these others. The point I am making, apart from the fact that it is amusing, is that it did pick up some other people who were family people who should have been funded.[132]

160. However, although some local organisations have been very effective in informing people of the review, they do not guarantee universal coverage: Ms Gilley told us that the SHA had established links with the Easington working men's club but, "obviously, we were unable to replicate that across all of the working men's clubs in County Durham and Tees Valley." [133]

161. Age Concern told us that it had "concerns about the robustness with which some strategic health authorities have trawled",[134] and these concerns were echoed by the Ombudsman:

    We have some concerns about everybody who needed to know having been captured by the publicity.[135]

162. When we put this to the Minister, he told us that he was satisfied that the trawl arrangements had been thorough enough:

    Certainly we did ask strategic health authorities to carry out a trawl of people who they think might have been wrongly assessed and they should have done it automatically. I would be surprised if we have caught everybody in the net, but we tried … instructions were given to carry out a trawl to try and do it as well as we could, but this is an imperfect world.[136]

163. We were concerned by many witnesses' doubts that SHAs' review processes had succeeded in identifying all those who might have been wrongly assessed, and in particular that publicity campaigns had favoured the articulate and well informed. When we put this to the Minister, he responded that SHAs had 'tried' to do the trawl as well as they could, but that 'this is an imperfect world'. The Government should have instructed SHAs to proactively search their records to identify potential cases themselves, rather than relying on publicity and word of mouth to encourage claimants to come forward. We would urge the Government to endeavour to continue to identify people who might have been affected.

Problems with record keeping

164. An enduring theme throughout our evidence was the poor quality record keeping, and in some cases, absence of records. This has caused considerable problems in carrying out retrospective reviews. According to the independent review, the quality of individual case records varied from very bad to excellent. Instances were frequently cited where records were undated, unsigned, or contained nothing of any relevance to the needs of the resident, and where residents' notes were frequently in the wrong files. In a few instances there were situations in which records were not contemporaneous and had clearly been created for the purpose of the review.[137]

165. Michael Young of North West London SHA argued that the lack of records, and difficulty in accessing records had not been anticipated by SHAs.[138] Cath Attlee of Hounslow PCT told us that although problems with record keeping were not evident everywhere, there were "examples across the board" in all types of care settings, not only residential care homes.[139]

166. Anne Williams of Citizens' Advice also argued that in carrying out the reviews, some SHAs had been inflexible in the types of records they would accept as evidence, refusing to accepting evidence from carers, or even GPs or hospitals records, and instead would accept only the "written contemporaneous records of the nursing care that was given at that time" that was prepared by the care home. As some nursing homes have closed down, this creates an impasse, where the case "just sits on a desk and it is very difficult to get it moved forward".[140]

167. The retrospective review process has brought to light serious shortcomings in the quality of information and record-keeping in assessments and in on-going care management. Not all records can be kept indefinitely, and we do not want to impose an intolerable burden on NHS organisations and care homes. However, clearer guidance on what should be kept and how long for is clearly needed, and we therefore recommend that the national framework for continuing care should provide detailed guidance on this. Because of the difficulties in obtaining contemporaneous nursing records, we also recommend that SHAs who are still involved in the retrospective review process should adopt a more flexible approach to the types of evidence they will consider, including carer evidence, and GP and hospital records.

Restitution or compensation?

168. SHAs told us that in accordance with Department of Health guidance, they had made restitution payments to people wrongly denied continuing care, based on the actual costs they incurred adjusted for inflation, but not compensating them for any other losses they might have incurred, for example if people sold their homes, or had to give up jobs to care for relatives.[141]

169. However, in her memorandum the Ombudsman stated that it is her principle that "where funding was wrongly withheld, the individual, or their estate, should be put back in the position they would have been in had the maladministration not occurred"[142]. The Ombudsman has received many cases claiming compensation for sale of houses or for loss of earnings, and is currently taking these forward with the Department rather than with the individual SHAs or trusts involved.

170. The Minister argued that the Government's policy was based on the approach that "would have been arrived at by the Courts". He argued that providing people with compensation on the grounds that their house, had they not sold it, might have increased in value, could give rise to increasingly ambitious financial claims based on entirely hypothetical arguments, and also pointed out that, when people were made retrospective payments for continuing care, they were not required to pay back any benefits they received at the time, to which they would not have been entitled had they been receiving continuing care.[143]

171. It is beyond the scope of this inquiry to address the question of whether people wrongly denied continuing care should be given compensation for house sales and loss of earnings as well as simple restitution for the actual money they spent. However, the Ombudsman has raised this as a serious concern expressed in a number of complaints she has received. We urge the Government to liaise with the Ombudsman on this issue to attempt to agree a common position. Where appropriate, complainants should have access to adequate legal advice.

123   The Health Service Ombudsman for England, NHS Funding for Long Term Care - Follow up report, HC 144, December 2004, pp1-2 Back

124   The Health Service Ombudsman for England, NHS Funding for Long Term Care - Follow up report, HC 144, December 2004, p1 Back

125   Q246 Back

126   The Health Service Ombudsman for England, NHS Funding for Long Term Care - Follow up report, HC 144, December 2004, p1 Back

127   CC29, para 2.4 Back

128   The Health Service Ombudsman for England, NHS Funding for Long Term Care - Follow up report, HC 144, December 2004, p2 Back

129   CC15 Back

130   Para 3.43 Back

131   CC11 Back

132   Q74 Back

133   Q74 Back

134   Q126 Back

135   Q201 Back

136   Q335 Back

137   Department of Health (Henwood M ), Continuing Health Care: Review, revision and restitution, December 2004. Back

138   Q51 Back

139   Q49 Back

140   Qq95-96 Back

141   Q56 Back

142   CC23, para 14 Back

143   Q340 Back

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