Independent Review of NHS Continuing Healthcare

5. Recommendations

5.1 In compiling the recommendations within this report the Panel noted that:

5.1.1 The broad policy direction in Scotland has been to reduce the numbers of individuals who spend long periods of their lives in hospital wards.

5.1.2 The population served by Health Boards vary in their rurality, levels of deprivation, and demography.

5.1.3 There is considerable variation in the number of NHS, Local Authority, private and third sector residential and care home facilities that are available in different Health Board areas.

5.1.4 This variation creates a degree of geographical inequity of access to different types of care that will persist for as long as a variation in the provision of different care facilities exists.

5.1.5 Other aspects of the provision and funding of long term care are also inequitable, specifically the restriction of free personal and nursing care to those over the age of 65 years.

5.2 After considering the evidence gathered and feedback received, it is the Panel's belief that:

5.2.1 No individual in Scotland should have to live out their life in hospital accommodation, irrespective of their age, disability or financial situation. Such an arrangement should apply only where a hospital alone can meet the individual's needs.

5.2.2 The Scottish Government should actively seek to further minimise the numbers of individuals who have no alternative other than to live out their lives in hospital accommodation.

5.2.3 Only those individuals who are required to live in hospital should be exempted from charges relating to their accommodation. All other individuals, whatever their age or disability should contribute to the funding of accommodation costs, should their financial situation permit.

5.2.4 It is the Panel's intention that the recommendations in this report will:

5.2.4.1 Support the established Shifting the Balance of Care policy to minimise the numbers of individuals who are required to live in hospital accommodation.

5.2.4.2 Minimise the inequity of the location, provision and funding of long term care as far as is possible within current geographical constraints.

5.2.4.3 Clearly dissociate the principles underlying the funding of health, personal and nursing care from those underlying the funding of accommodation costs.

5.3 CEL 6 (2008) and Assessment Eligibility for NHS CHC

5.3.1 Recommendation 1: The Panel recommend that CEL 6 (2008) is 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.

5.4 Eligibility and Provision

5.4.1 The strategic direction of care in Scotland has been to move long term care provision from hospital to non-hospital settings and the Panel believes that this direction should be continued.

5.4.2 However, in some Health Board areas, alternative care provision has not yet developed sufficiently and as a consequence some individuals currently remain in NHS hospital long term care simply because no alternative local provision of care is available. This happens particularly in rural areas, and may continue to be the case for the foreseeable future. The Panel's recommendations take account of this geographical variation

5.4.3 Recommendation 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?"

5.4.4 This recommendation mirrors the manner in which many multidisciplinary teams currently assess long term care needs for individuals who cannot return home and implicitly takes into account local variations in the availability of alternative venues of care and the development of community support services.

5.4.5 There is currently considerable geographical variation in the availability of Local Authority, private and third sector residential and care home facilities and in the development of domiciliary support services. Clinicians and multidisciplinary teams should therefore judge the appropriateness of providing HBCCC according to their assessment of both the individual's condition and care needs and the local alternative care provision in both domiciliary and Local Authority and private residential and nursing care facilities.

5.4.6 In the three island Health Board areas, where care home provision outwith the NHS is low and cannot be developed, some individuals whose care needs would be properly met in a nursing home setting in another Health Board will require to receive ongoing long term care in an NHS hospital setting or residential care with enhanced primary care support. The Panel was struck by the unique challenges of island communities and was impressed by the flexible local solutions which have been developed. Future guidance should acknowledge and encourage the innovation necessary to meet the challenges facing island Health Boards and Local Authorities.

5.4.7 The majority of individuals admitted to hospital are discharged to their usual place of residence after receiving treatment. A minority are discharged to an alternative facility usually for intermediate or long term care, and approximately 2% die before discharge. The Panel refers to care following admission, whatever the outcome, as an "episode of care".

5.4.8 There were 1,174,117 general hospital admissions in Scotland in between 1^st April 2012 and 31^st March 2013. The vast majority of episodes of care (99.5%) last less than three months. However, some individuals remain in hospital care three months or longer after admission, if complex medical problems have occurred, the medical condition of the individual has never stabilised, or if rehabilitation has been challenging and not been able to be provided in any other setting.

There were 22,169 mental health admissions between 1^st April 2010 and 31^st March 2011 of which 14% remained in hospital for more than three months^[8].

5.4.9 The Panel believes that the most appropriate definition of HBCCC for use in a new census process should be one that is based on the length of stay of the patient in NHS facilities.

5.4.10 Recommendation 3: The current annual census should be replaced. 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.

5.4.11 If the individual's care needs cannot be met in a non-NHS facility, the individual should remain in HBCCC.

5.4.12 If the individual's care needs can be met in a non-NHS facility the individual should move to such a facility in line with local and national patient choice and moving on policies^[9].

5.4.13 The Panel believes that the majority of patients who remain in hospital three months after admission will have a bona fide reason for this length of stay, most likely relating to their clinical condition and the non-availability of suitable alternative care.

5.4.14 The Panel stresses that established processes relating to choice and moving on from hospital care should be enacted at any point after admission if an individual's care needs can be met in an alternative non-NHS facility and that the Panel is not recommending that such processes can only be put into action after three months. However, in some cases in which there is dispute about the appropriate venue of care, there is currently no agreed and documented time at which such policies can be utilised. This recommendation will standardise the approach among Health Boards in Scotland.

5.4.15 The well established national system for the audit of delayed discharges^[10] from hospital settings should continue unchanged and will reinforce the appropriate enactment of choice and moving on policies, serve to ensure that inappropriate hospital stays are minimised and that Health Boards' actions to address and reduce such stays remain a focus of health and social care agencies.

5.4.16 Recommendation 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.

5.4.17 This recommendation will support the aim to reduce the number of individuals who spend long periods of their lives in NHS hospital facilities and to reduce the current inequity of provision and funding of long term care across Scotland.

5.4.18 The Public Bodies (Joint Working) (Scotland) Bill^[11] currently being considered by the Scottish Parliament will require Health Boards and Local Authorities, working together, to develop strategic plans for their areas.

5.4.19 These plans should, in the view of the Panel, include details of the current and proposed future levels of HBCCC and other forms of non-domiciliary long-term care required to meet the needs of their population.

5.4.20 In approving the integration plans for Health Boards and Local Authorities in the integrated arrangements envisaged by the proposed legislation, the Scottish Government needs to be assured that "the money is following the patient" and that joint financial plans should explicitly outline the proposals to move resources to support the principle of shifting the balance of care.

5.4.21 This recommendation for some Health Boards will mean that an active programme of re-provision of continuing care facilities in domiciliary, Local Authority residential or private care home facilities will be required. Such a process has been successfully implemented in other Health Board areas.

5.4.22 HBCCC will continue to be free of charging and clinically driven as it is provided in hospital. Those in receipt of HBCCC will continue to be affected by the regulations which govern entitlement to benefit during prolonged hospital stays.

5.4.23 The current arrangements under CEL 6 (2008) allow for the provision of NHS CHC in private nursing homes. Individuals in this situation receive funding which meets all of their costs, including accommodation costs.

All people whose needs can only be met in hospital will be treated equally, have their care and accommodation provided free and have their benefit entitlement adjusted appropriately.

All people living in care homes will also be treated equally, be subject to the same charging policies and contribute to their accommodation costs depending on their individual financial circumstances.

5.4.24 The Panel believes that this position is as fair and equitable as current variations in the provision of venues for long term care can permit and will be much more easily understood than the current arrangements.

5.4.25 The Panel recognises that the recommendations do not address the inequity in the current arrangements whereby younger adults under 65 with high levels of need do not benefit from free personal and nursing care.

5.5 Monitoring

5.5.1 Recommendation 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.

5.5.2 The process should:

a. Provide accurate "real-time" data on the numbers of individuals in receipt of HBCCC nationally.
b. Provide a means by which individual Health Boards can monitor the number of patients with prolonged (more than three months) hospital stays and take steps to reduce such stays when possible and appropriate.
c. Provide the Scottish Government with a real-time, robust and meaningful measure of the relative progress of Health Boards towards minimising the number of patients whose care is provided in an NHS hospital setting.
d. Form a basis for forward planning for future service delivery.

5.5.3 All Health Boards should continuously collate the data produced and submit regular reports to the Scottish Government indicating:

a. Monthly, the numbers of individuals in receipt of NHS care for a duration of three months or greater over the period of the preceding month.
b. Monthly, a breakdown of the justification for such stays.
c. Annually, a summary report indicating success or obstacles to progress towards the target number of NHS CHC beds for their Health Board area.
d. At least on an annual basis, Health Boards must consider the data collected and monitor progress in implementing the agreed arrangements for HBCCC.

5.6 Information for Individuals, Relatives and Staff

5.6.1 Recommendation 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.

5.7 Disputes and Appeals

5.7.1 The Panel heard evidence from various Health Boards that in the past the appeals process involved a degree of externality with consultants from other Health Boards invited to consider appeals. This was a lengthy, inefficient and expensive process which was not thought to have altered nor improved the initial decision making and in few instances resulted in an appeal being upheld on clinical grounds.

5.7.2 The Panel believes that prolonged waits in NHS hospital settings for dispute resolution are invariably detrimental to individual patient care and also result in suboptimal usage of inpatient NHS resources.

5.7.3 The current delayed discharge policy, choice policy and local moving on arrangements provide a framework in which most appeals and disputes are successfully resolved.

5.7.4 However, it is possible that some families will continue to be concerned about the most appropriate venue of care and will dispute a decision to discharge at any stage in the decision making process including the recommended three month milestone.

5.7.5 Recommendation 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.

5.7.6 In the event of continuing dispute following internal review, the Panel recommends that the NHS complaints procedure be enacted, with the option of the complainant being able to take their grievance to the SPSO.

5.7.7 The Panel's recommendations would create a clear milestone for decision making regarding the appropriate type and venue of care that would exist at three months following admission to hospital. Whilst it would remain the case that most individuals' care needs and appropriate venue of ongoing care to meet these needs would be agreed by three months, this milestone would provide a clear focus for enactment of choice and moving on policies for individuals certified at that time as not requiring HBCCC.

Specific Groups

5.8 Individuals Under the Age of 65 years

5.8.1 Some individuals under the age of 65 years have historically had their continuing care needs met in NHS hospital settings. Such individuals typically have learning disability, mental health problems or disabling neurological disease such as demyelinating disease or motor neurone disease.

5.8.2 The Panel recognises that the current situation in Scotland, in which only those individuals aged over 65 years are eligible for free personal and nursing care, is unfair and inequitable. That view was also expressed by some Voluntary Organisations, who voiced concerns that the provision of free personal and nursing care is based on age rather than clinical need.

5.8.3 The Panel believes that there is inequity in the funding of personal and nursing care needs for individuals under the age of 65.

5.8.4 The Panel believes that accommodation costs for all individuals in non-NHS settings should remain subject to financial assessment irrespective of age.

5.8.5 Recommendation 8: The principles and recommendations outlined in this report should apply equally to individuals of all ages.

5.9 Terminal and Specialised Palliative Care

5.9.1 Terminal care is currently provided and supported by the NHS and Local Authority in NHS, Local Authority and private care venues. Hospices that provide specialist terminal and palliative care are part funded by the NHS.

5.9.2 The funding of patients in hospices will be unaffected, as will be the provision of domiciliary palliative care.

5.9.3 Patients within hospices should not be included in HBCCC numbers.

5.10 Individuals with Specific Diagnoses

5.10.1 The Panel has carefully considered whether specific provision should be made for individuals with specific diagnoses, such as Parkinson's disease, dementia, stroke or mental health conditions and believes that all conditions that compromise the ability of an individual to continue to live in their own home should be treated equally.

5.10.2 The Panel does not believe that it would be appropriate, necessary or equitable to suggest any additional recommendations for individuals who suffer with a specific medical diagnosis.

5.10.3 The Panel sees no logic behind a view that any group of individuals defined by a specific diagnosis should be exempt from charging policies for accommodation costs should they require non-domiciliary care at any stage.

5.11 Other Issues

5.11.1 Recommendation 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.

5.11.2 In some Health Board areas this will mean that individuals in receipt of NHS CHC in care homes will continue to receive fully funded care in a care home setting.

5.11.3 These proposals are likely to impact on Primary Care teams and on their ability to provide sustainable, high quality care but should be in part mitigated by resource transfer. Health Boards and Local Authorities should be held to account by Scottish Government on a fair and equitable method of resource transfer.

5.11.4 The Panel considered in detail the significant issues that surround the transition of patients from hospital to a care home environment and the substantial impact that these issues have on the welfare of individual patients and the health care system. The Panel believes that too many patients currently reside in hospital beds for too long whilst awaiting assessments of need and the resolution of disputes relating to such assessments. The Panel further believes that the Scottish Government should consider whether exemption from all charging costs for a period of 30 days for all patients entering care homes would help to resolve some of the issues surrounding this period of transitional care.