The process of retrospective assessment and review
25. Our report in February 2003 recommended that strategic health authorities and primary care trusts should 'Make efforts to remedy any consequent financial injustice to patients, where the criteria, or the way they were applied, were not clearly appropriate or fair' (paragraphs 26 and 39). We also recommended that the Department of Health should 'Consider how they can support and monitor the performance of authorities and primary care trusts in this work' (paragraphs 27 and 40).
26. The process of retrospective review has produced positive results. First, in a written Ministerial statement to the House of Commons on 16 September 2004, it was announced that "almost 20% of cases have been granted recompense". Secondly, in a written statement to the House on 22 June 2004 (amended on 24 June), Dr Ladyman said that further cases for retrospective funding which had come to light should be decided within two months of all the information being received by the NHS body concerned. We very much hope that this will be the case. Finally, the experience of conducting reviews and making decisions has resulted in a higher profile for, and a better understanding of, the issues involved in continuing care - a previously largely neglected area.
27. We know that many strategic health authorities have made considerable efforts to review and integrate their local criteria and to apply them consistently and fairly to individual cases. We also recognise that, because of the sheer volume of cases and the lack of resources and support, the process of carrying out the retrospective reviews has often been demanding for staff and frustrating for patients and relatives. In view of this, on several occasions where we have received complaints that concern the same primary care trust or strategic health authority, we have made informal approaches to the body concerned to encourage them to put things right before we considered taking things further. This has often achieved a positive response and agreement to re-review individual cases. For example, in response to our letter pointing out some flaws in their retrospective review of a patient, one strategic health authority replied, 'The panel have recognised that more supporting information would be helpful, and we now therefore obtain as much documentation as is possible to support the appeals. It is our intention to formally review the process to incorporate lessons learned over the past year.' That attitude is encouraging and welcome news for complainants.
28. However, we currently have over 430 unresolved cases where retrospective reviews have been carried out, but complaints have been made that the review process was flawed, or that the decision made was unreasonable or that there were problems in obtaining payment of the monies owed to those granted full funding. The trust and strategic health authority assessments and reviews we have already examined run the full spectrum from meticulous and searching to those where claims have been rejected summarily, in some instances without any attempt to look at the patient's health care needs or to obtain their health care records or simply because of the setting in which the care was delivered.
29. In more than half of the cases that we have examined, we have found that assessments have not been carried out properly. There are a number of aspects of the review process where complaints have revealed systemic problems. They include problems with:
- Lack of consistency of approach to reviews;
- Non-robust assessment methods;
- Confused and inconsistent panel procedures and failures to obtain documentation and record reasons for decisions;
- Poor communication with, and involvement of, patients and relatives; and
- Delays in payment of restitution.
30. In April 2003 the Department of Health issued guidance to strategic health authorities in the form of a template, which contained a suggested procedure for carrying out retrospective reviews. This has been interpreted by most strategic health authorities as involving a re-assessment of the patient against the eligibility criteria, using the available evidence, followed by a hearing by a primary care trust panel, which makes a decision. In some areas, if the claimant contests the outcome of the first panel, this is followed by an appeal heard by a different panel at the strategic health authority.
31. However, it emerged that few primary care trusts were aware of the existence of the template. In any case, the suggested procedure was not compulsory, although there was an expectation that retrospective reviews would follow the two-tier process outlined in the previous paragraph. In our investigations we have therefore had to take a view on whether the procedure followed and the decision reached were reasonable - that is, robust, transparent and fair. In many cases, we have concluded that they were not. Complaints we have examined show that there was much variation between primary care trusts and strategic health authorities in the way they approached reviews and that in some cases they were poorly carried out. This variation is reflected in the diverse titles given to the different tiers of the process. We found them variously referred to as 'restitution panels', 'independent review panels', 'Ombudsman panels', 'appeal panels' or 'retrospective care panels'. This caused confusion for patients, relatives, their representatives and our investigators alike in trying to ascertain whether cases had been reviewed more than once, and the degree of independence of the second tier, if one existed.
32. In the absence of support and leadership from the Department of Health and from some strategic health authorities, our investigators were regularly receiving requests from staff at trust level, where the majority of retrospective reviews were carried out, for advice, interpretation of Department of Health guidance and even training. We also received many requests from patients, relatives and patient advice and pressure groups for clarification of the review process. Where appropriate we were as helpful as we could be. However, in our view it was a matter for the Department, not the Ombudsman, to clarify procedures which the Department, itself, had initiated. We raised this in meetings with the Department.
Mr J had successfully appealed on 1 August 2003 against a decision of the primary care trust that his mother, an Alzheimer's sufferer, did not qualify for NHS funding. However, the Chief Executive of the strategic health authority (who had initially endorsed the appeal decision) intervened to prevent the funding being paid because she considered that the decision was flawed, even though payments had already commenced.
Our enquiries revealed that the decision not to pay had originated from the primary care trust. Having disagreed with the appeal decision, they had asked two other strategic health authorities to undertake assessments of Mrs J's entitlement to continuing care funding using those other authorities' criteria. The strategic health authorities decided that, under their criteria, Mrs J would not have qualified for funding, but Mr J was not informed that they had been asked to do this and was therefore unable to be present or make representations.
We were concerned that this process had been neither transparent nor fair. The strategic health authority accepted that Mr J should have been told what was happening. They agreed that another strategic health authority would be asked to make a fresh assessment (using the original authority's criteria) on the understanding that the original authority would be bound by the decision. They also agreed that funding should continue to be paid at least until that decision had been made.
Mr C complained about the funding arrangements for his mother, Mrs C, who had been in a nursing home from October 1994 until she died in February 2000. In a separate complaint, Mrs A complained about the funding arrangements for her father, Mr E, who was also in a nursing home from October 1995 until his death in June 2002.
The strategic health authority wrote to Mr C that '.Mrs C's placement falls outside the scope of the review because the review only relates to.placements made between April 1st 1996 and 1st October 2001'. They wrote to Mrs A that, '.Mr E's placement falls outside the scope of the review because: the review only relates to placements made between April 1996 and February 2003.' We contacted the authority and questioned whether this was reasonable. We suggested that the reviews should include those who were already in nursing homes in April 1996, and not just those who entered them afterwards. The authority agreed with our interpretation of the scope of the retrospective review programme, and agreed to consider these cases and others in the same situation.
33. The quality of decision-making and of the clinical assessments on which those decisions are based has been very variable. We have found decisions made on scant evidence or on a nursing assessment rather than a comprehensive, multi-disciplinary continuing care assessment. Some assessments have only considered a patient's needs at a single point in time rather than considering the issues of stability or complexity or intensity of need from all perspectives and over the full period following discharge from hospital. Patients' needs rarely remain unchanged for long periods of time.
34. Our previous report referred to the range of different approaches that existed for assessing eligibility for continuing care funding. Some authorities had detailed guidance and procedures to support their criteria, but others relied on clinical staff to interpret the criteria with little or no practical guidance. There had also been little national guidance on methods and tools for assessing against eligibility criteria. This was leading to inconsistencies in approach and decisions both within and between health authorities. Some of the complaints we have received about retrospective reviews indicate that there is still uncertainty about how to interpret, and carry out robust assessments against eligibility criteria. We therefore recommend that, to support the application of national, minimum eligibility criteria, there should also be national good practice guidance and a set of accredited tools to assist with continuing care assessments.
Following the Ombudsman's criticism of a trust's retrospective review, a letter detailing her concerns was sent to the trust, which agreed to do the review again.
We looked again at the case once the re-review had been completed, and found that, unlike the first review:
- there had been a full multi-disciplinary review group of appropriate practitioners with a sufficient level of independence and experience, who met and considered the case;
- all possible time frames for funding were reviewed;
- the review had examined all relevant clinical documents
- healthcare needs for each time frame were debated and recorded by the panel
- appropriate rationale for the decision not to fund had been presented, and
- the decision reached appeared reasonable when compared to the eligibility criteria.
Although the review itself was done well, we noted that there had been a lack of communication with or involvement of the complainant in the review and re-review process, and that the initial shortcomings in the process warranted an apology from the Chief Executive of the trust. This is now being sought.
35. In the cases we have seen, membership of the review panels has not been consistent between primary care trusts. In some cases, decisions were made by a single officer. Some panels did not include the relevant professional or clinical input to enable full consideration of whether the claimant was eligible from an informed clinical perspective. We are aware of one strategic health authority where a chair of an appeals panel routinely refused to convene panels; and where decisions were taken without taking clinical advice, even though the process set out in the authority's documents made it clear that panels would normally be held and that clinical advice was necessary.
36. Record keeping and documentation has been very inconsistent, both for original case records and the retrospective reviews themselves. Some NHS bodies have made every effort to trace the original records and documentation, although they have not been assisted by the absence of care home nursing records in many cases, which appear to have been destroyed after a minimal period. The quality of the original records, where they do exist, has also been variable. Other bodies have made only cursory attempts to trace documentation. One strategic health authority had initially refused to take into account a reliable but non-contemporaneous report, an approach which appeared to us to be unreasonably inflexible and was changed after our intervention.
In August 2004 the Ombudsman received a complaint from Mr A that the retrospective review panel had refused funding for his late mother, Mrs A.
We called for and reviewed the papers, and found that the assessment prepared by the trust's nurse assessor was well constructed and set out a clear chronology of events. It was accompanied by a comprehensive set of multi-disciplinary assessments, undertaken before Mrs A was discharged from hospital to a nursing home. However no nursing home documents were sent to the review panel, and this was important as the nursing assessor had made reference to a rapid decline and terminal stage illness in Mrs A during January and February 2003.
We wrote to the trust, commenting on the positive aspects of the assessment. Mrs A may have qualified for funding during January and February 2003. The review panel had not identified this as a possible time frame for funding, nor had they debated the intensity and rapid decline in healthcare needs that may have been present during this period. We asked the trust to re-review Mrs A's eligibility for funding for this period, which the trust agreed to do.
37. Records and documentation generated during the retrospective review process have also varied considerably in quality. Since there has sometimes been a lack of documentation about panel membership, assessment data, proceedings and decisions in some cases, it has not been clear what evidence those panels examined. This flawed process has made it impossible for us to judge the reasonableness of decisions made in these circumstances. We recommend the clarification of standards for record keeping and documentation both by health care providers and those involved in the review process.
Solicitors complained on behalf of Mrs V, about the refusal to fund her mother, Mrs T. We considered the case and in our letter to the trust in September 2004, we pointed out that their refusal provided no explanation about how the decision was reached. In particular that:
- there was insufficient reference to Mrs T's medical, health and social care needs;
- the source of the information about her needs was not identified;
- the rationale for refusing funding referred to the providers of the care ("unqualified carers" and "no input from specialist clinicians") and not Mrs T's care needs, and
- sufficient consideration had not been given to Mrs T's changing needs.
Furthermore, we noted that the rationale used by the PCT for refusing funding stated that Mrs T "does not have any specialist nursing needs", but in the papers we received was an undated assessment, seen by an independent review panel which stated:
"fluctuations in Mrs T's mental state are unpredictable which would cause management problems in a setting where specialist skills and experience were not available".
We requested a fresh, properly conducted review.
38. Poor communication is a recurring theme in our investigations. It has also proved to be an issue in complaints about retrospective reviews. They have confirmed that NHS bodies vary greatly in how well they communicate with patients and their relatives. Some patients and relatives were kept informed of progress; at least one strategic health authority's process specifically included the sustained involvement of relatives at all stages, which we welcomed. Others had to wait for months after submitting a request for a retrospective review before they heard anything. Some NHS bodies provided well-reasoned letters explaining the outcome of the review and including relevant evidence. Others sent one-paragraph rejection letters. For example, one primary care trust failed to explain the process or the rationale for their decision to refuse full funding, despite repeated requests to do so from relatives. Another failed to explain sensitively or in any detail the reasoning for prioritising particular retrospective cases. Some trusts also failed to advise complainants about the existence of the appeals process or the Ombudsman.
39. This is a difficult and complex area and some complainants were confronted with unexplained jargon when they wanted a simple explanation of a decision. Our investigators have frequently had to spend time trying to explain the background and the detail to relatives, who have understandably been confused by the complexities and misled by some commentators and the media. One claimant, whose case we did not uphold, although disappointed with the outcome, wrote to us saying:
'Your letter did make clearer the criteria used to assess the care funding requirements, a point which we did not fully appreciate at the beginning of the complaint procedure, i.e. "having needs sufficiently intense or complex or unpredictable". Although [relative] did need "extensive caring and was unable to attend to the activities of daily living" I appreciate that this did not meet the criteria as specified.'
40. The aim of carrying out the retrospective reviews was to identify any individuals who had been wrongly refused continuing care full funding in the past and to make appropriate restitution. The Department of Health have provided around £180 million in funding for restitution to date. However, we have received a number of complaints concerning delays on the part of some NHS bodies in paying monies owed or recompense agreed. In addition, some claimants have been required to sign a declaration that the payment is for 'full and final settlement' when the payment is for monies that should rightly have been paid to the patient or the relatives at the time. We are also considering some complaints that the rate of interest applied to some retrospective payments has not been appropriately calculated or that the level of restitution granted does not provide adequate compensation for the previous failure to grant continuing care funding.
Mrs Y complained about the funding arrangements for her mother, Mrs D, who died in November 2001 aged 85. Mrs D had a high intensity of health care needs. Having conducted a retrospective assessment, the primary care trust decided that Mrs D should have been deemed eligible for funding from February 2001 until she died. However, they refused to pay restitution until they had all the invoices. They accepted that payments had been made but a small number of the invoices from the eligible period were missing. The primary care trust tried to arrange a meeting with the Finance Director, the Head of Continuing Care and Mr and Mrs Y, but Mr Y felt this would be too upsetting for his wife. We discussed the matter with the primary care trust and explained that while we accepted the need for a clear audit trail, we felt there was sufficient information in this case and that it was unreasonable not to process Mrs Y's claim. The primary care trust agreed to pay.