Independent Review of NHS Continuing Healthcare

2. Executive Summary

2.1 In June 2013, in response to concerns raised in the media regarding the application of the guidance contained within CEL 6 (2008) by Health Boards in Scotland, the Cabinet Secretary for Health and Wellbeing commissioned an independent panel to review the delivery, monitoring and governance of NHS Continuing Healthcare (NHS CHC) in Scotland.

2.2 NHS CHC is a package of care provided and solely funded by the NHS, operated under the guidance contained in the Scottish Government's CEL 6 (2008).

2.3 The NHS pays the total cost of NHS CHC and not the Local Authority nor the individual. This may be for a prolonged period of time but is not necessarily for life and is subject to regular review.

2.4 Importantly and in contrast to other types of care package, accommodation costs are fully funded by the NHS, irrespective of the ability of the individual to contribute to these costs.

2.5 NHS CHC is not available to individuals living in their own homes.

2.6 NHS CHC is available to individuals of all ages with any illness or disability provided they meet the eligibility criteria described in CEL 6 (2008).

2.7 In 2013, 1,711 individuals were receiving NHS CHC; three quarters of whom were in NHS facilities, the remainder in private nursing homes. These 1,711 individuals represent approximately 5% of all those in institutional care in Scotland in 2013.

2.8 Approximately 33,000 individuals in institutional care are not in receipt of NHS CHC. They are predominantly cared for in private or Local Authority care homes and are eligible for assessment for free personal and nursing care irrespective of their ability to contribute to these costs but liable to charging for their accommodation costs dependent on their personal financial circumstances.

2.9 The Independent Panel received verbal and written feedback and submissions from all 14 Health Boards in Scotland, representatives of Local Authorities, and a variety of voluntary organisations, and reviewed data compiled by ISD Scotland from the annual census of NHS CHC.

2.10 The Panel concludes that:

2.10.1 CEL 6 (2008) is no longer an appropriate instrument to operate NHS CHC. Specifically:

• The eligibility criteria are open to individual clinical interpretation. Consequently, although eligibility for NHS CHC remains a clinical decision, it is subjective, varying between clinicians in the same and different Health Boards and contributing to a variation of provision.
• It has not resulted in a consistent level of provision and availability of either NHS facilities or alternative Local Authority, private or third sector facilities amongst Heath Boards across Scotland.
• It fails to recognise the needs of a wide range of differing patient and client groups.

2.10.2 Many professionals and most of the public have limited or no awareness of NHS CHC. This further contributes to variability in provision and also means that not all of those considered for NHS CHC receive an adequate explanation of the process or the appeals procedures.

2.10.3 The appeals procedures are "in house" within Health Boards, and there is neither externality nor independent advocacy other than referral to the NHS complaints procedures or finally to the Scottish Public Services Ombudsman (SPSO).

2.10.4 The annual census process is not fit for purpose in its current form. The data lacks reliability and credibility and cannot safely be used to make meaningful comparisons of NHS CHC provision among Health Boards nor over periods of time. Specifically:

• The census describes the number of individuals in receipt of NHS CHC on one day of each year, and not the total number of individuals in receipt of NHS CHC over a whole year.
• Methods of data collection vary substantially among Health Boards.
• Health Board level scrutiny of data is extremely variable.
• The data is not subject to external audit or scrutiny.
• NHS Scotland has not used the data to support the provision of care in non-NHS settings across Scotland.

2.11 The Panel recommends that:

2.11.1 CEL 6 (2008) should be completely revised and the term NHS CHC should be replaced with the term "Hospital Based Complex Clinical Care" (HBCCC). The choice of this term emphasises the recommendation that HBCCC should be a form of care that is only provided in facilities wholly funded and managed by the NHS.

This revision should adhere to the following principles:

2.11.2 Eligibility for HBCCC should continue to be decided by specialist clinicians in partnership with a professional multidisciplinary team. No specific list of eligibility criteria, or scoring system, based on a description of an individual's current or predicted future condition, prognosis or care needs, should form part of the guidance. For the future the primary eligibility question should simply be "Can this individual's care needs be properly met in any setting other than a hospital?"

2.11.3 The current annual census should be replaced. Consequently, all individuals in NHS hospital care at a point three months after admission should be considered for HBCCC unless they are a delayed discharge. At this point and every three months thereafter as necessary, a clinician and another member of the multidisciplinary team responsible for the care of the individual should assess and affirm this need on specifically designed documentation.

2.11.4 Health Boards and Local Authorities should determine the number of HBCCC beds that will require to be provided in their area. The Scottish Government should monitor progress towards more equitable provision than currently exists.

2.11.5 The Scottish Government should, via the new census recommended in this report, monitor the shift of long term care venues from NHS to more homely care settings in all Health Boards.

2.11.6 An easy to read document containing information on HBCCC should be made widely available to patients, carers and all health care professionals. The document should be reviewed at a minimum every three years and revised at that time if thought necessary. The document should be available in printed form, in appropriate languages and formats.

2.11.7 When there is a dispute between an individual, their family and a multidisciplinary team about the most appropriate venue of care the decision should continue to be reviewed on an internal basis by a clinician from the same Health Board.

2.11.8 The principles and recommendations outlined in this report should apply equally to individuals of all ages.

2.11.9 It would be unfair and unjust if those who are currently in receipt of NHS CHC are disadvantaged by the proposals and the current financial arrangements should remain for these individuals without detriment.