Independent Review of NHS Continuing Healthcare

4. Findings

4.1 CEL 6 (2008) and Assessment of Eligibility for NHS CHC

4.1.1 CEL 6 (2008) was introduced to bring clarity to the process of NHS CHC following MEL (1996) 22. The sections relating to eligibility criteria are detailed below:

44. Continuing inpatient care should be provided where there is a need for ongoing and regular specialist clinical supervision of the patient as a result of-

(a) the complexity, nature or intensity of the patient's health needs, being the patient's medical, nursing and other clinical needs overall;
(b) the need for frequent, not easily predictable, clinical interventions;
(c) the need for routine use of specialist health care equipment or treatments which require the supervision of specialist NHS staff; or
(d) a rapidly degenerating or unstable condition requiring specialist medical or nursing supervision.

4.1.2 Twelve of the fourteen Health Boards were concerned with the application of CEL 6 (2008). Changes in care have overtaken CEL 6 (2008) and it did not now adequately take into account changes in demography, advances in clinical and community care, advances in technology, expectations of individuals and families, nor advances in the role and training of other professional members in community based multidisciplinary teams.

4.1.3 The clinical interpretation of the wording of CEL 6 (2008) varied significantly, particularly in relation to the words "regular", "specialist", "complexity", "intensity", "frequent" and "rapidly".

4.1.4 There were inconsistencies in the application of CEL 6 (2008) among Health Boards in part relating to variable clinical interpretation of the criteria, in part to the relative availability of different care facilities and in part to differing strategic approaches to a reduction in NHS long-term bed provision.

4.1.5 Some Health Boards have actively pursued a policy of providing NHS CHC in private care homes, others have not. Some designated a specific number of their beds as NHS CHC beds while others did not designate any for this purpose.

4.1.6 Some Health Boards recorded no individuals as meeting the NHS CHC eligibility criteria but clearly described individuals receiving care in NHS facilities (typically cottage or community hospitals) that was, in some cases, for life.

4.1.7 These same individuals, had they been resident in another Health Board area, would have received their care in a private care home where they may have been subject to charging policies.

4.1.8 Notwithstanding the impact of an ageing population, most Health Boards believed that a reduction in provision of NHS CHC was to be expected as part of the Shifting the Balance of Care agenda.

4.1.9 A small minority of Health Boards used a decision making tool. Such a tool was suggested in CEL 6 (2008) but never produced.

4.1.10 Most Health Boards were aware of the need to undertake a regular review of individuals in receipt of NHS CHC to establish whether they still fulfilled the eligibility criteria, although none could provide detailed audit data relating to such a process and only a minority were able to indicate how many individuals had been found to be ineligible after such an assessment.

4.1.11 All Health Boards and Local Authorities acknowledged that some individuals were admitted to care homes direct from their own homes. However, the Panel could not identify any systematic screening process with the specific purpose of identifying eligibility for NHS CHC.

4.1.12 All Health Boards regarded the assessment of NHS CHC eligibility for individuals in NHS inpatient care as their responsibility. However, it was unclear whether they regarded the assessment of individuals in other settings, particularly those living in a care home, as their own responsibility or that of the Local Authority.

4.1.13 It was clear that people living in care homes had their care needs reviewed at intervals. However, it was not clear that in reviewing the care needs of those in care homes, that there was systematic consideration of whether an individual's needs had changed to such an extent that they would now meet the criteria for NHS CHC.

4.1.14 Many Health Boards emphasised that if an individual's care needs could not be met in a care home setting, then the patient would be admitted to hospital. At that point their need for NHS CHC would be assessed.

4.2 Decision Making and Accountability

4.2.1 The process relating to decision making outlined in CEL 6 (2008), as below, contains information relating to WHO makes the decision, WHERE the decision is made, WHY the decision is made and WHEN the decision is made.

43. The consultant (or GP in some community hospitals) will decide, in consultation with the multi-disciplinary team, whether the patient-

(a) needs inpatient care arranged and funded by the NHS;
(b) needs a period of rehabilitation or recovery, arranged and funded by the NHS; or
(c) should be discharged from inpatient care

4.2.2 Decision making in most Health Boards typically fell to an individual Consultant as the final decision maker with some expressing concern of feeling isolated by the process.

4.2.3 There appeared to be no routine involvement of primary care clinicians in the decision making process, although some could be involved if they had responsibilities in cottage or community hospitals operated by the NHS.

4.2.4 Clinicians were aware of the financial implications for individuals and their families of the decision regarding eligibility but were not influenced by such implications in their decision making.

4.2.5 Eligibility frequently appeared to be based on a clinical assessment of whether an individual's care needs could be met in a non-NHS setting, typically a private care home, rather than a direct assessment against the CEL 6 (2008) criteria.

4.2.6 As a result, given the variation in provision of non-NHS care, individuals who could have been managed in a private care home in one Health Board area could be managed in an NHS facility in another.

4.2.7 Some clinicians stressed that assessment of care needs could not be restricted to "a moment in time" but was an ongoing process. Some patients moved in and out of the eligibility criteria over time. It was also felt that overly rapid determination of a patient's status in regard to eligibility for NHS CHC could lead to inappropriate decisions being made about their future care.

4.2.8 Assessment of eligibility was also in part related to perceived life expectancy. Some clinicians felt that it was inappropriate to place an individual with a terminal diagnosis and a rapidly deteriorating condition, but who did not meet the current CEL 6 (2008) eligibility criteria, in a private care home unless it was certain that local community care provision was such that the individual would not require to be re-hospitalised as their condition deteriorated.

4.2.9 Furthermore, the question of defining an individual as in receipt of NHS CHC usually only arose when a move from one care setting to another was being considered. Consequently, terminal patients with high level and escalating care needs who were judged too frail to be moved, and were subsequently cared for in NHS wards until they died, would not always be documented as being in receipt of NHS CHC even though they met the eligibility criteria.

4.2.10 Managers all agreed that NHS CHC was a clinical decision, made without budgetary constraints.

4.2.11 Few Health Boards were able to provide precise financial information relating to their recent, current or projected budgets with regard to NHS CHC.

4.2.12 The Panel were concerned that there was very little evidence of over-arching co-ordination of strategic thinking about or operational accountability for NHS CHC by management in the majority of Health Boards.

4.2.13 Some Local Authorities expressed concern that they were not always fully involved in discussions about provision of care following discharge from hospital, be that in a domiciliary or non-domiciliary location, and that the final decision about the location of care should not be the sole responsibility of a secondary care clinician.

4.2.14 In some instances, Local Authorities expressed their concerns at being asked to provide increased levels of sophistication in medical care and supervision without the necessary training or support.

4.2.15 Progress towards the integration of health and social care appeared variable. Although working relationships generally appeared to be good, there was evidence of some tension between some Health Boards and Local Authorities in agreeing relative financial contributions to community care programmes.

4.2.16 Most Health Boards did describe a process of "resource transfer" from Health Boards to Local Authorities.

4.2.17 Such resources had been derived predominantly from the closure of NHS facilities, typically "residential" or "long stay" facilities and including facilities previously utilised for NHS CHC. The purpose of this transfer of resource, which had operated for many years in some areas, was to enhance services in the community in a manner that enabled more individuals who had historically required long term care in hospital to be managed in a more appropriate setting.

4.2.18 It was unclear whether the "money had followed the patient" in all instances of such resource transfer.

4.3 Documentation, Audit and the Annual Census

Documentation of Decision Making

4.3.1 The requirements for record keeping are set out in CEL 6 (2008) as outlined below:

65. All stages of decision making in relation to the determination of eligibility for NHS continuing health care, including the assessment eligibility decision, care planning and information on the subsequent provision and monitoring of that care should be appropriately and fully documented. Decision makers should be identified and the reasoning behind the decisions clearly explained.

66. It should also be recorded whether or not the individual was satisfied with the decision and what information they were given, including information on the appeals process.

67. Such records, including where eligibility for NHS continuing health care has not been agreed, should be retained for a minimum of six years. In cases involving mental health issues, the records should be kept for the lifetime of the patient. All relevant agencies and care providers will be responsible for maintaining the relevant records.

68. It is expected that any part of the decision making process would be recorded in

• The patient's clinical records
• The Single Shared Assessment
• In the formal record of the multi disciplinary team.

4.3.2 The majority of Health Boards indicated that individuals who were deemed to be eligible for NHS CHC would have this decision recorded in their case notes, typically in the record of a multidisciplinary team meeting.

4.3.3 A small minority of Health Boards used specific additional documentation to record decisions and those that did only used such documentation to indicate eligibility for NHS CHC rather than ineligibility.

4.3.4 No Health Board routinely, systematically or specifically recorded the decision that an individual was ineligible for NHS CHC at routine multidisciplinary team meetings during their stay in hospital or at the point of discharge from NHS care. This was largely due to the fact that it would be a major logistical undertaking that was felt to be excessively bureaucratic.

4.3.5 Given the above, audit of the decision making process for most Health Boards could only be undertaken via a process of retrospective and detailed case note review. As a consequence, most Health Boards were unable to provide figures relating to the total numbers of individuals assessed for NHS CHC, or those judged to be ineligible after such assessment.

4.3.6 Health Boards believed that, in cases in which eligibility for NHS CHC had been questioned, typically by relatives of an individual, there would be specific documentation in the case record that indicated that the individual was judged to be ineligible, following a multidisciplinary team meeting.

4.3.7 For the majority of Health Boards, the only information relating to NHS CHC provision and decision making available to the Panel was that published in the annual census and also that provided from appeals and complaints about decisions.

The Annual Census

4.3.8 The Scottish Government undertakes an annual census of NHS CHC in accordance with a document issued in September 2009 by Information Services Division (ISD) of NHS National Services Scotland (NSS) entitled "Balance of Care/Continuing Care Census - Definitions and data recording manual^[7]".

4.3.9 The census categorises individuals into two categories - "Category A": in receipt of NHS CHC and "Category B": in hospital for over one year, but not in receipt of NHS CHC.

4.3.10 Although detailed and comprehensive, the guidance for the annual census has not resulted in the provision of reliable, accurate or meaningful information.

4.3.11 The principal weakness of the annual census is that a one-off count on a single day in a year does not reflect the total number of people in receipt of NHS CHC during the whole year. Some Health Boards suggested that the length of stay of individuals in NHS CHC had declined over recent years, although data to support this is of variable quality, but if this is the case comparisons of provision over time based on the current "snapshot" methodology will be misleading.

4.3.12 Furthermore, most Health Boards could not explain how they made the distinction between "Category A" and "Category B" individuals, with the result that classification is unlikely to be consistent across Health Boards. Most Health Boards were unclear of the specific reasons that might lead to a patient in their care being in "Category B" (not meeting NHS CHC criteria but in hospital for over one year with no definite discharge date set).

4.3.13 During the review meetings, most Health Boards demonstrated a low level of corporate awareness of the purpose or methodology of the annual census, with some noting difficulty in collecting census data. Consequently, ownership of the information and accountability for its accuracy was generally extremely low.

4.3.14 Some Health Boards based their census return on a count of beds designated as NHS CHC beds, but acknowledged that some individuals in these beds could actually be aiming to return home or be undergoing assessment or awaiting care home placement and not actually meet the CEL 6 (2008) criteria.

4.3.15 Some Health Boards had no beds designated as NHS CHC beds, but acknowledged that individuals in some of their facilities, typically cottage or community hospitals, would never return home, and could meet the eligibility criteria for NHS CHC, but were not recorded as such.

4.3.16 Some Health Boards based their census returns on a count of specific individuals that were thought or known at that time to be classified as NHS CHC. One Health Board reported that all wards recorded NHS CHC individuals on the census day and the collated snapshot figures were then submitted to ISD.

4.3.17 Out of area placements were included within the returns for some, but not all, Health Boards.

4.3.18 Some Health Boards were uncertain if individuals with learning disabilities were included in their returns.

4.3.19 One Health Board reported that, on census day, mental health inpatients with no plan for discharge were counted as "Category A", rather than "Category B" patients.

4.3.20 Most Health Boards were unaware if individuals in hospice facilities were included in their census returns.

4.3.21 Only a small minority of Health Boards referred to any continuously collated or systematically reviewed source of internal data to inform or verify their census return.

4.3.22 Most Health Boards felt that the census figures were likely to under represent the numbers of individuals actually in receipt of NHS CHC.

4.4 Communication, Awareness and Transparency

4.4.1 Patient information guidance in CEL 6 (2008) places responsibility on Health Boards as detailed below:

73. It is important that information on assessment, eligibility, decision making processes and appeals should be made available to patients and their carers, who should be actively involved in any decisions. To this end Health Boards should ensure that the eligibility and the assessment process are clearly explained to both the patient and the carer at an early stage. This information should be in an easy to understand formal, be written from a patient's perspective and be available in any form that might be needed - Braille, audio, different languages etc - and be provided in a timely manner.

4.4.2 The guidance also states that Health Boards fully explain and document all decisions and provide copies of assessments to individuals and their carers, as well as produce an information leaflet on NHS CHC.

During the course of the review, the Panel found that:

4.4.3 NHS CHC did not appear to have been a high profile, high priority or problematic issue to most Health Boards until the media interest and publicity in June 2013.

4.4.4 There was broad acceptance from Health Boards, Local Authorities and Voluntary Organisations that most members of the general public have little or no awareness or understanding of NHS CHC.

4.4.5 The majority of Health Boards expressed the view that the language of CEL 6 (2008) was unhelpful, unclear and outdated.

4.4.6 The publicity which preceded the review had both heightened public awareness and further highlighted the deficiencies in the current guidance.

4.4.7 Local Authorities noted that the public perception of free personal and nursing care was that all elements of care were now free and that there was limited understanding of the issues of accommodation costs for many care home residents or of the financial issues relating to the personal and nursing care provision for those under 65.

4.4.8 The charging arrangements for care home residents involve a complex calculation that takes into account entitlement to free personal and nursing care, pensions and other benefits, savings and capital assets. Access to NHS CHC does impact on entitlements to benefits. However, savings and capital assets are not used to pay for accommodation costs as they would be for other care home residents.

4.4.9 There was a general acknowledgement that many professionals working in the wider health and social care system did not have sufficient knowledge of NHS CHC.

4.4.10 Health Boards had made significant efforts to raise the awareness of staff in the period following the implementation of CEL 6 (2008) but few had any systematic method of ensuring that awareness was maintained.

4.4.11 There was a consistent view from Health Boards that GPs and other primary care professionals had little awareness of NHS CHC.

4.4.12 There was also a view that NHS CHC had not been considered a key strategic issue in recent years.

4.4.13 Most Health Boards used the centrally produced NHS Scotland information leaflet to communicate information regarding NHS CHC to individuals and their carers. A small minority had developed bespoke local versions.

4.4.14 Most Health Boards only provided written information regarding NHS CHC to those who requested it or those who challenged or appealed against a decision not to provide NHS CHC. There was virtually no information freely and openly available in written or electronic form for individuals and carers to read and fully consider. Even where there was such information, there was no strategy to ensure that it was freely available in wards or relevant clinical areas.

4.4.15 The response provided by Voluntary Sector organisations reflected a very similar position to that of Health Boards and Local Authorities in terms of awareness. Whilst there is a small group of well informed staff whose work requires them to have a detailed knowledge of NHS CHC, there is a much larger group of staff, users and carers who have little or no knowledge or understanding.

4.4.16 The Panel noted in particular comments from two Voluntary Organisations:

"For us the issue is not the level of awareness that we have of these systems, rather there is a more general lack of awareness of NHS Continuing Care amongst health and care professionals, and in the general public."

"[We are] well aware of the availability of and eligibility for NHS Continuing Healthcare. We are also aware that families of people who have had a stroke are often not offered the necessary information to apply for NHS CHC, or only given the information if they ask for it. We also know that NHS staff do not always have a sufficient level of understanding of the availability of NHS Continuing Care"

4.5 Appeals

4.5.1 Guidance on the appeals process is outlined in CEL 6 (2008) as below:

122. Where an individual does not agree with the decision on eligibility for NHS continuing health care, or decision to discharge, he or she (or carer or advocate) can appeal the decision by requesting a second opinion from another appropriate, competent medical professional.

4.5.2 Most decisions regarding the appropriate venue of care for individuals who could not live at home are reached quickly, smoothly and effectively in a partnership between the individual, their carer, and a multidisciplinary team.

4.5.3 A small proportion of individuals and carers dispute decisions regarding the venue and funding of care recommended by a multidisciplinary team. Typically this relates to the decision that an individual does not require to stay in hospital.

4.5.4 It was a widely held view that disputes are more likely to relate to the financing of care in a non-NHS setting, rather than the quality of care.

4.5.5 The number of appeals had historically been low but had risen following recent publicity.

4.5.6 All Health Boards were able to provide the Panel with information relating to the numbers of appeals received against a decision not to provide NHS CHC and of the outcome of these appeals.

4.5.7 Most appeals occurred before discharge from an NHS facility, rather than when an individual was residing in a care home.

4.5.8 Recently, some appeals have been received posthumously.

4.5.9 It was unclear whether most appeals were received in writing or verbally, or through a distinct and specific appeals process other than the NHS complaints process.

4.5.10 A minority of Health Boards could provide clear documentary evidence of their appeals process.

4.5.11 Appeals were typically managed internally within each Health Board. If an appeal was received, another clinician from that Health Board with relevant experience would be identified to review the individual and make a judgement about their eligibility for NHS CHC.

4.5.12 Most Health Boards expressed the view that introducing a process of external review of appeals, in which a clinician from another Health Board reviewed the individual, as happened under the provisions of MEL (1996) 22, may improve perceived fairness, but would be more expensive and would cause delay and would be unlikely to alter the outcome of appeals overall.

4.5.13 In situations where an appeal had not been upheld, and the appellant remained unhappy with the decision, Health Boards typically managed this through the NHS complaints procedure, including referral of their decisions to the SPSO if necessary.

4.5.14 In the course of the review, some Health Boards asked the Panel for advice on the handling of outstanding appeals. The Panel advised that appeals needed to be dealt with under the terms of the current guidance.

4.5.15 Given the findings of the Review, it is likely that some individuals who meet the criteria in CEL 6 (2008) are not in current receipt of NHS CHC funding.