LEGAL FRAMEWORK OF THE HEALTH & SOCIAL CARE DIVIDE

LEGAL FRAMEWORK OF THE HEALTH & SOCIAL CARE DIVIDE Kate Whittaker Public law and community care legal consultant Housing & Support Alliance kate.whittaker2@googlemail.com North of England Health & Learning Disability Network Event CRMZ Rooms, Kingsway, Widnes Wednesday 24th April 2013

Legal framework of the health and social care divide • Overview of social care and health duties • The s21(8) boundary – the limits of social care • Eligibility for continuing health care • Coughlan and other cases • Grogan and the relevance of banded nursing care • The National Framework for CHC and FNC • Latest developments

Overview of social care and health duties Social care services: As part of residential care: Section 21 National Assistance Act 1948: ‘residential accommodation for persons aged 18 or over who by reason of age, illness, disability or any other circumstances are in need of care and attention which is not otherwise available to them’

Overview of social care and health duties Social care services: Domiciliary and community based services: s.29 NAA 1948: ‘arrangements for promoting the welfare of persons... aged 18 or over who are blind, deaf or dumb or who suffer from mental disorder... or who are substantially and permanently handicapped by illness, injury, or congenital deformity or such other disabilities as may be prescribed’ s.2 Chronically Sick & Disabled Persons Act 1970: Combines with s.29 to convert it from being vaguely worded and generally discretionary into a set of specific services to which individual disabled people have an enforceable right, including:- practical assistance in the home support to access education &/or recreation adaptations holidays, etc.

Overview of social care and health duties Health services: NHS Act 2006 (as amended by Health & Social Care Act 2012): s.1 General duty: ‘The Secretary of State must continue the promotion in England of a comprehensive health service designed to secure improvement – in the physical and mental health of the people of England, and in the prevention, diagnosis and treatment of physical and mental illness.’ s.2 General power: ‘The SoS, the Board or a CCG may do anything which is calculated to facilitate, or is conducive or incidental to, the discharge of any function conferred on any person by this Act.’

Overview of social care and health duties Health services: (NHS Act 2006) s.3 Duties of CCGs as to commissioning certain health services: ‘A CCG must arrange for the provision of the following to such extent as it considers necessary to meet the reasonable requirements of the persons for whom it has responsibility – hospital accommodation, [other accommodation for medical purposes] medical, dental, ophthalmic, nursing and ambulance services, [maternity services] such other services or facilities for the prevention of illness, the care [and after-care] of persons suffering from illness ... as the group considers are appropriate as part of the health service, such other services or facilities as are required for the diagnosis and treatment of illness.’ General ‘target’ duties for healthcare in the area, rather than specific individual eligibility

Overview of social care and health duties Duties applying to both health and social services authorities: Mental Capacity Act 2005 and associated guidance (including Deprivation of Liberty Safeguards) Safeguarding and monitoring provisions Equality Act 2010: Duties not to discriminate in the provision of services, and have due regard to the need to eliminate unlawful discrimination and advance equality of opportunity

Overview of social care and health services Duties applying to both health and social services authorities: Duty to act compatibly with the rights under the European Convention on Human Rights (s.6 Human Rights Act 1998) Article 8 ECHR - right to a private and family life: includes the right to ‘physical and psychological integrity’ (Pretty v UK (2002) 35 EHRR 1) May require positive steps by LA or other statutory body, not just absence of interference with rights Enhanced degree of protection of Art.8 rights of disabled people when human dignity is at stake (A,B,X,Y v East Sussex &DRC): the more disabled the person is the more pro-active the steps needed But Article 8 is a ‘qualified’ right – proportionate interference may be lawful if it is in accordance with specified factors – including resources – egMcDonald v RB Kensington & Chelsea [2011] UKSC 33

Overview of social care and health services Significance of the distinction? Services from NHS bodies are free; those from LAs may be means-tested – so (eg) help with bathing is free if provided in the home by a district nurse or NHS auxiliary, but if provided by a social services-funded care assistant, may be subject to a charge- similarly with many other items and services eg equipment, therapies etc. Many other factors that make a difference to the services: very different legal duties and policies governing assessment of needs, eligibility and nature/extent of services provided – not covered here.

Overview of social care and health services Arises particularly in the context of continuing care: ‘Care provided over an extended period of time, to a person aged 18 or over, to meet physical or mental health needs that have arisen as a result of disability, accident or illness’. May include services from NHS bodies and/or from LAs. So when is it health and when is it social care?

QUESTION 1: What can social care cover? The s.21(8) Boundary – The limits of social care s.21(8) National Assistance Act 1948 (as amended): ‘Nothing in this section shall authorise or require a local authority to make any provision ... authorised or required to be provided under the National Health Service Act’ i.e. where a service could be provided by the NHS or social services then it must be provided by the NHS – NHS is the dominant service Unlawful for a local authority to provide services that could be provided by the NHS This was confirmed as meaning that the NHS should [and local authorities should not] care for (amongst others) ‘the chronic bedfast who may need little or no medical treatment, but who do require nursing care over months or years’ (Ministry of Health circular, 1957) At the time, envisaged primarily in a residential context. But similar provision restricting s29 NAA services including domiciliary care.

The limits of social care BUT changing demographics and policy, including: 1979 introduction of supplementary benefit payments (later income support) to cover the cost of private nursing home accommodation – led to closure of many NHS continuing care wards and transfer of patients to privately run nursing homes funded by social security budget- cost rose from £10million in 1979 to £2.3 billion in 1993 1993 (under the NHS & Community Care Act 1990) social services authorities became ‘gate keepers’ for such community placements – empowered for the first time to make payments towards the cost of independent nursing home placements. Residents had to pay some or all of their costs, means-tested. Led to general, but mistaken assumption that the NHS no longer had the same responsibility for funding long term care

QUESTION 2: So when is it health care? Leeds Ombudsman case 1994: Incontinent and unable to walk, communicate or feed himself: a kidney tumour, cataracts and occasional epileptic fits, for which he received drug treatment Had reached the stage where active treatment was no longer required but he was still in need of substantial nursing care, which could not be provided at home and which would continue to be needed for the rest of his life BUT Stable Substantial but low level nursing No need for specialist input Adequately cared for in ordinary nursing home

Eligibility for continuing health care Leeds Ombudsman case 1994: Highly critical: ‘When he no longer needed care in an acute ward but manifestly still needed what the National Health Service is there to provide, they regarded themselves as having no scope for continuing to discharge their responsibilities to him because their policy was to make no provision for continuing care.’ ‘I recommend that the Authority review their provision of services for the likes of this man in view of the apparent gap in service available for this particular group of patients.’

Eligibility for continuing health care Leeds Ombudsman case 1994: Led to issuing in 1995 of first continuing care guidance, requiring every health authority to prepare and publish local ‘continuing health care statements’ spelling out which patients would be entitled to free continuing health care funded by the NHS. ‘If in the light of the guidance, some HAs are found to have reduced their capacity to secure continuing care too far – as clearly happened in the case dealt with by the Health Service Commissioner – then they will have to take action to close the gap.’ Government also announced procedures enabling patients to challenge their discharge from in-patient care.

Coughlan judgment (1999) Tetraplegic Doubly incontinent Requiring regular catheterisation Partially paralysed in the respiratory tract with consequent difficulty in breathing Subject not only to the attendant problems of immobility but to recurrent headaches caused by an associated neurological condition Court held her needs were of a ‘wholly different category’ than could be met by social services – i.e. well into the territory of NHS continuing care

Coughlan ‘The distinction between those services which can and cannot be so provided [by social services] is one of degree which in a borderline case will depend on a careful appraisal of the facts of the individual case. However, as a very general indication as to where the line is to be drawn, it can be said that if the nursing services are: merely incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide to the categroy of persons to whom section 21 refers and of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide, then they can be provided [by social services].

Coughlan So, taken as a whole, the nursing or other health services required by the individual should be: (in residential care) ‘no more than incidental or ancillary’ to the accommodation that LA social services have a duty to provide, and (more generally – domiciliary care too) not of a nature beyond which a LA whose primary duty it is to provide social services could be expected to provide. Unlawful for social services to fund if they are more than ancillary or incidental to social care, or complex or specialist. The key factors are both quantitative and qualitative

2003 Ombudsman Report ‘I do not underestimate the difficulty of setting fair, comprehensive and easily comprehensive criteria... But that is all the more reason for the Department to take a strong lead in the matter... One might have hoped that the comments made in the Coughlan case would have prompted the Dept to tackles this issue... [however] Authorities were left to take their own legal advice about their obligations to provide continuing NHS health care...’ ‘The long awaited further guidance in June 2001... Gives no clear definition... If anything it is weaker... Such an opaque system cannot be fair.’ ‘My enquiries so far have revealed one letter sent out from a regional office of the Department of Health to health authorities following the 1999 guidance, which could justifiably have been read as a mandate to do the bare minimum.’

Wigan Patient (2003) Several strokes No speech or comprehension Unable to swallow PEG feed

PointonHealth Service Ombudsman case (2004) Advanced dementia ‘Some of the severe behavioural problems which had characterised his illness during its earlier stage had now diminished’, but his behaviour was still challenging Unable to look after himself His wife cared for him at home Ombudsman: The local eligibility criteria had been applied in a way that excluded the likelihood of the NHS providing continuing healthcare at home Assessment had focused on physical needs at the expense of psychological needs Assessment had failed to recognise that the standard of care provided by Mrs Pointon was equal to the care that a nurse could provide

T, D and B v Haringey LBC (2006) Two sisters (aged 3 and 19) both with tracheostomies needing suctioning about 3 times a night and replacing once a week. Living at home and mother had been trained by the hospital to make the daily routines and cope with the emergencies that might arise Court considered these functions were indicative of a primary health need, to suggest otherwise would be ‘to provide an impermissibly wide interpretation, creating obligations on a social services authority which are far too broad’

Health and Social Care Act 2001 Section 49 Designed to improve the performance of the NHS, extend direct payments for social services users and provide a fairer system of funding for long-term care including measures to reduce the need to sell one’s home on entering residential care. Section 49 confers responsibility for providing nursing care directly to the NHS, excluding nursing care from community care services. Three bands of free nursing care available alongside social services funded care

R (Grogan) v Bexley NHS Care Trust (2006) ‘That as a matter of fact registered nursing care falling within the high band (and perhaps the medium bands) falls outside that limit set by Coughlan, particularly when it is remembered that the focus of Coughlan was on nursing care and the decision of the Court of Appeal was that the care she needed was well outside the limits of what could be lawfully provided by a local authority suggests that over 20,000 people in England are being inappropriately charged for their nursing home accommodation. This means that in each English social services authority area on average at least 125 self funding or local authority funded residents should in fact be funded by the NHS ie inappropriate expenditure in the region of £2.5million per annum.’

The National Eligibility Framework for CHC & FNC National Framework for Continuing Healthcare and NHS-funded nursing care (2007; revised July 2009 – ‘the Framework’): in response to the Grogan case, sets out a unified process for establishing eligibility for NHS continuing healthcare (CHC) rather than differing local SHA eligibility criteria- mandatory guidance Decision Support Tool (DST) for NHS CHC (Sept 2009): Document used to apply the Framework to individual cases, by bringing together and recording/applying evidence, to help establish eligibility All updated November 2012 in light of NHS reforms

The National Framework NHS continuing healthcare: A complete package of care provided by the NHS, free of charge, to meet all the assessed needs of an individual who is considered to have a primary health need May be provided: in a residential setting - residential costs and food included, or in the person’s own home – if so, it is possible that additional social care may be provided which can be charged for (confusing grey area)

The National Framework Key indicators of a Primary Health Need for eligibility for CHC: NATURE - the type of health condition or health treatment and the quality and quantity of it COMPLEXITY - one or more needs or symptoms which interact making overall needs difficult to manage or control INTENSITY - needs which are so severe that they require regular interventions to manage risk UNPREDICTABILITY - unexpected changes in condition that are difficult to manage and cause significant risk All new concepts, not defined in primary legislation (i.e. by Parliament) or case law – guidance is legally inferior to these Overly complicated? However the guidance indicates that overall the application of these concepts should be equated with the Court’s ‘quality/quantity’ test as the defining issue in defining the s21(8) boundary

The National Framework The Framework transferred from LAs to NHS bodies: lead responsibility for ensuring that people are considered for NHS CHC or Funded Nursing Care responsibility for arranging end of life care If there is not a primary health need, there are two other types of NHS care which take place outside of a hospital and may be provided (free) alongside community care services from the LA: Primary care at home or in residential setting e.g. district nurses Funded Nursing Care (FNC) in a nursing home – now a single band (£109.79 per week from 1st April 2013)

Assessment under the National Framework for CHC Healthcare Checklist (Sept 2009): Screening tool to identify people who may need a referral for a full consideration for NHS CHC Local authorities have a duty to refer to health authority if they identify health issues that may need to be addressed by way of continuing care In a hospital setting, should always consider whether need for CHC assessment before discharging to local authority care End of life care: Individual with a rapidly deteriorating terminal condition should be referred for a fast-track CHC decision using the Fast Track Pathway Tool, followed by urgent procurement of a care package

Assessment under the National Framework Multidisciplinary, including all specialist and non-specialist assessments Health authority must identify individual(s) to coordinate it up to point of funding decision and preparation of care plan Follow Framework Core Values & Principles and other relevant guidance (including guidance for specific groups), e.g. Single Assessment Process, Care Programme Approach

Core values and principles The assessment and decision-making process, and the decisions themselves, should be culturally sensitive, person-centred & transparent A carer providing regular and substantial care has a right to an assessment of their needs as a carer Document the person’s wishes on how and where care is to be delivered Ensure the person and their family/carers understand the process and receive advice and info to be able to participate in informed decisions about their future care

Core values and principles Obtain the person’s consent before assessing; if capacity is in issue seek alternative consent via Mental Capacity Act 2005 and code of practice Use an IMCA where appropriate but even if IMCA not required, ensure individuals/family are aware of other local advocacy services NB the 5 principles of MCA 2005, including acting in best interests and using the least restrictive option

CHC assessment - core values and principles Decision-makers should not marginalise a need just because it is being successfully managed: well-managed needs are still needs – only take it into account if successful management has permanently reduced or removed the need Nor should the reasons for a decision on eligibility be based on:- the person’s diagnosis the setting – irrelevant the nature of the relationship of current care-givers to the person the ability of current care-givers/provider to manage care whether or not care staff are NHS-employed the need for or presence of ‘specialist staff’ in care delivery the existence of other NHS-funded care the person’s ability to fund care privately ...or any other ‘input-related’ (rather than needs-related) factors

Decision support tool Behaviour (max. is P) Cognition (max. is S) Psychological/Emotional needs (max. is H) Communication (max. is H) Mobility (max. is S) Nutrition – Food & Drink (max. is S) 7. Continence (max. is H) 8. Skin (including tissue viability) (max. is S) 9. Breathing (max. is P) 10. Drug Therapies & Medication: Symptom Control (max. is P) 11. Altered states of consciousness (max. is P) 12. Other significant care needs (max. is S) 12 ‘care domains’ in which needs are recorded against the appropriate statement/description of the level of need, corresponding with: no needs (N), low (L), moderate (M), high (H), severe (S) or priority (P)

Decision support tool Department of Health (Introduction resource pack, 2007): • Not ‘a decision making tool’ – just to support the process • Not ‘suitable for every individual’s situation’ • Not a ‘substitute for professional judgement’ (and note all the core values and principles)

Decision support tool Compare that with advice within the DST itself, which says:- • a person would be expected to qualify for NHS CC if his or her DST record contains: • one priority need [but only 4 domains carry this level], or • two or more incidences in the severe category • person may qualify where there is: • one severe need [7 domains carry this level] together with needs in a number of other domains, or • a number of domains with high and/or moderate needs

Decision-making ‘The CCG may choose to use a panel to ensure consistency and quality of decision-making. However a panel should not fulfil a gate-keeping function, and nor should it be used as a financial monitor.’ (Framework, para91) ‘The final eligibility decision should be independent of budgetary constraints, and finance officers should not be part of a decision-making panel’ (Framework, para 93) ‘Only in exceptional circumstances, and for clearly articulated reasons, should the multi-disciplinary team’s recommendation not be followed. A decision not to acceptthe recommendation should never be made by one person acting unilaterally.’ (Framework, para 91) ‘[Exceptional] means exactly what it says on the tin, there must be something truly exceptional. If more than 1% of MDT recommendations are not being followed then something is wrong: exceptional circumstances means that there is something ‘truly unusual’ (DH stakeholders meeting, July ’10)

Problem solved? In theory what local authorities are responsible for should be the inverse of the ‘primary health need’ test – there should be no gap in the provision of care, with people needing care that neither the NHS nor the LA will pay for. But the problem is: Still no definitions of ‘NHS continuing healthcare’ or ‘primary health need’ in primary legislation Limit of social services power to fund care is fixed by Parliament – s21(8) NAA 1948 Eligibility for NHS continuing healthcare is set by guidance Other policy material eg DST not necessarily consistent even with the Framework values and principles and may set the bar even higher

Problem solved? • ‘Well-managed need still a need’:Skin/tissue domain: • No ‘Priority’ band; ‘Severe’ is the highest, but even to be regarded as ‘High’ need, there would need to be ‘Pressure damage or open wound(s)/pressure ulcer(s) with full thickness skin loss involving damage or necrosis to subcutaneous tissue’, or damage/wound(s) with partial thickness skin loss and not responding to treatment • To be ‘Severe’, necrosis would need to extend so that the underlying bone was visible. • Haringey case (sisters with tracheostomies): Would register as a ‘severe’ on the Breathing domain at the most – possibly only ‘high’; absent other needs, DST would indicate no entitlement to NHS CC. • Coughlan: Tetraplegic, but would probably be assessed as moderate in terms of mobility and be ineligible overall

Problem solved? And if a person is eligible? • ‘Where a person qualifies for NHS continuing healthcare, the package to be provided is that which the CCG assesses is appropriate to meet all of the individual’s assessed health and associated social needs. Although the CCG is not bound by the views of the LA on what services the individual requires, the LA’s assessment under s47 NHS & Community Care 1990, or its contribution to a joint assessment, will be important in identifying the individual’s needs and, in some cases, the options available for meeting them.’ (Framework, para. 167) • ‘What the NHS funds is up to it – within the limits of public law reasonableness’ - S v Dudley PCT (2009) • Remember these are ‘target’ duties....

Personalisation as a route to integration? • Personal budget: (In Control definition) The user must: - know how much money they have in the budget, whether they receive it as cash (a direct payment) or not - be able to spend the money in ways and at times that makes sense to them • know what outcomes must be achieved with the money Compare with draft Care and Support Bill (July 2012): • ‘... a statement which specifies – • the amount which the local authority assesses as the cost of meeting those' of the adult’s needs which it is required or decides to meet... • the amount which, on the basis of the financial assessment, the adult must pay towards that cost, and • if, on that basis the local authority must itself pay towards that cost, the amount which it must pay’ ... no mention of individual being entitled to decide how it should be spent

Kate Whittaker Public law and community care legal consultant Housing & Support Alliance kate.whittaker2@googlemail.com North of England Health & Learning Disability Network Event CRMZ Rooms, Kingsway, Widnes Wednesday 24th April 2013

LEGAL FRAMEWORK OF THE HEALTH & SOCIAL CARE DIVIDE