Independent Review of NHS Continuing Healthcare

3. Background

3.1 Context of the Review

3.1.1 Mr Alex Neil, The Cabinet Secretary for Health and Wellbeing was approached by the media in June 2013 to respond to a claim that relatively fewer people were receiving NHS Continuing Healthcare (NHS CHC) in Scotland than in England. The annual NHS CHC census was published some two weeks after the initial media interest and showed a 15% reduction in the numbers of individuals receiving NHS CHC in Scotland since March 2012. The census also showed a wide variation of provision among individual Health Boards.

3.1.2 NHS CHC is described in national guidance dated February 2008 - CEL 6 (2008)^[1]:

8. NHS continuing healthcare is a package of continuing health care provided and solely funded by the NHS. The NHS, and not the local authority or individual, pays the total cost of that care. NHS continuing health care may be for prolonged periods but not necessarily for life and entitlement should be the subject of regular review.

3.1.3 The purpose of the guidance in CEL 6 (2008) was to:

• Promote a consistent basis for the assessment of, and provision of, NHS continuing health care.
• Ensure care provision is based on robust assessment and decision making processes.
• Ensure that patients and their carers have access to relevant and understandable information.
• Agree a basis for the development of effective local agreements on inter agency and multi disciplinary working in relation to NHS continuing health care.

3.1.4 It was hoped that CEL 6 (2008) would counter early criticism of the guidance in MEL (1996) 22^[2], which included:

• People unaware of NHS CHC - when asked, some professionals did not know about it or said it "only applied in England"
• Decisions not consistent or transparent
• Decision Support Tool needed
• Decisions are financially driven or influenced
• People unaware of right for second opinion

3.1.5 Following the introduction of CEL 6 (2008), a bi-annual Balance of Care / Continuing Care Census^[3] was introduced to collate information on all individuals receiving NHS CHC across Scotland. It was intended that information derived would not only monitor the numbers of those requiring NHS CHC but also inform the Shifting the Balance of Care^[4] policy agenda. In 2011 the census became annual.

3.1.6 In March 2013, the census recorded that 1,711 "Category A" individuals were receiving NHS CHC across Scotland, a decrease of 15% from the March 2012 census. 76% of NHS CHC individuals were in a hospital and 23% of individuals were in care homes. Almost all of those in care homes were in two of the fourteen Health Board areas.

3.1.7 A further 562 "Category B" individuals were identified in the census. These individuals did not meet the criteria for NHS CHC but had been in hospital for more than one year and had no planned date of discharge.

3.1.8 The 1,711 "Category A" individuals represented approximately 5% of all those in institutional care in Scotland in 2013.

3.1.9 The remaining 33,000 individuals in institutional care were not in receipt of NHS CHC. They were predominantly cared for in private or Local Authority care homes and were eligible for assessment for free personal and nursing care^[5] irrespective of their ability to contribute to these costs but liable to charging for their accommodation costs if their personal finances permitted.

3.1.10 In July 2013 the Cabinet Secretary for Health and Wellbeing requested that an Independent Review Panel be set up to:

i. assess whether guidance was being followed, and a consistent approach was being taken across Scotland
ii. confirm whether record keeping was adequate, and decisions made were being clearly and appropriately articulated to all concerned
iii. assess whether improvements were needed to raise awareness of NHS CHC amongst professionals and the general public
iv. assess whether the decision making process was based on clinical need rather than financial circumstances
v. consider whether an independent appeals process was required

3.2 Strategic and Policy Background

3.2.1 All Health Boards in Scotland, in partnership with Local Authorities and the private and third sector, and as part of the Shifting the Balance of Care and other policies, aim to enable as many people as possible to stay in their own homes for as long as possible, and, when living at home is no longer possible to provide care in a homely setting in the community rather than in an NHS hospital ward.

3.2.2 In recent years the capacity of the care system to manage individuals' care needs in domiciliary settings and care homes has increased markedly and the absolute requirement to manage individuals in NHS hospital facilities has consequently declined. Individuals for whom there was no option but to remain in hospital care ten years ago can now be safely and effectively managed outwith an inpatient hospital setting.

3.2.3 All Health Boards and Local Authorities recognise the need to provide support, treatment, care and time to individuals who, typically after a period of acute illness or hospitalisation, wish to return home but are, in the first instance, unable to do so.

3.2.4 A variety of services, frequently referred to as Intermediate Care Services^[6], have developed to maximise the potential of individuals to return to and remain in their own homes. These services, which may be domiciliary or non-domiciliary, have developed at different rates in different parts of Scotland. Non-domiciliary services are provided and funded in both NHS and non-NHS facilities.

3.2.5 All Health Boards and Local Authorities recognise that, even with further rehabilitation or reablement, some individuals do not improve sufficiently to return to their own homes or to alternative domiciliary settings such as sheltered housing. The care needs of these individuals are then met in non-domiciliary settings, provided by the NHS, Local Authority, the private and third sector (residential, nursing or care homes).

3.2.6 Currently, there is substantial variation in the capacity in each of these sectors in different Health Boards areas. Some Health Boards have a relatively large number of private sector homes available to provide for individuals who cannot return home. Others have relatively few and two island areas have none. Some Health Boards have retained significant numbers of NHS CHC hospital beds whereas others have retained none.

3.2.7 NHS CHC is typically provided in NHS facilities but CEL 6 (2008) does allow provision of such care in care homes. In the most recent census, 23% of individuals in receipt of NHS CHC in Scotland were in private care homes, with the vast majority of these in only two of the fourteen Health Board areas. One Health Board provided 50% of its NHS CHC in the private sector, but most had less than 5% of patients receiving NHS CHC in private care homes and six Health Boards did not utilise private care homes for NHS CHC.

3.2.8 Individuals judged ineligible for NHS CHC constitute around 95% of all those in non-domiciliary care and are typically care for in private, third sector or Local Authority residential or nursing homes and are liable to Local Authority charging for accommodation costs. All individuals over 65 in such care are eligible for free personal and nursing care. All other aspects of medical care are provided without charge by NHS Primary Care.

3.2.9 The use of private care homes for patients who are in receipt of NHS CHC means that an individual care home can have two distinctly funded groups of patients under their care - a very small number of those receiving NHS CHC and the vast majority who are not.

3.2.10 While it is the case that continuing health care provided by the NHS in whatever setting is free at the point of delivery, it is also the case that, depending on individual circumstances, continuing entitlement to a range of welfare benefits is affected by extended stay in hospital.

3.3 The Review Process

3.3.1 After an initial meeting and briefing from the Health Department, the Panel operated entirely independently of Scottish Government.

3.3.2 The Panel met representatives from all 14 territorial Health Boards in Scotland. The very open discussions that occurred centred on a series of questions relating to:

• Eligibility
• Decision making
• Record keeping
• Appeals
• Communications and awareness
• Transparency

3.3.3 It was agreed at every review meeting that any comments made would not be attributable to any individual or any individual Health Board in the report in order to encourage open debate and discussion.

3.3.4 The Panel did not stipulate that Health Boards include representation from any particular group of clinicians. However, those Health Boards that did provide clinical representation tended to provide individuals from secondary care.

3.3.5 The Panel did not discuss the specific circumstances of any individual who had appealed their eligibility for NHS CHC.

3.3.6 The Panel liaised with the Convention of Scottish Local Authorities (COSLA) during the duration of the review and met with representatives from the Association of Directors of Social Work.

3.3.7 The Panel wrote to 15 Voluntary Organisations inviting their feedback on awareness and eligibility, and seven responses were received. In addition to this, a meeting was held with one of the organisations to gain further feedback.

3.3.8 The evidence gathered from Health Boards, Local Authorities and Voluntary Organisations has been used to form the basis of the report and recommendations.