CONTINUING HEALTHCARE and PERSONAL HEALTH BUDGETS

1. CONTINUING HEALTHCARE and PERSONAL HEALTH BUDGETS Kate Whittaker Public law and community care legal consultant kate.whittaker2@googlemail.com London Health Network Event, Choice Support Head Office Wednesday 21st November 2012

2. PERSONALISATION: Basics • Self-directed support • Personal budget: No official legal definition as yet In Control says that 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

3. Types of personal budget Personal budget: provision from Social Services Personal health budget: provision from NHS body – PCT/CCG Individual budget: Money from one or more sources, which may include:- Social Services Independent Living Fund Supporting People Local Education Authority (e.g. for post-16 education) Health funds for equipment, transport, employment and more

4. 3 ways of holding and managing a personal budget Direct payments: Cash paid to the individual or carers of a child to purchase and manage services themselves, with or without support ‘Notional budget’: Held by the authority, but the individual (or carers of a child) know how much money is in the budget and discuss with a care manager or other nominated person about how to spend it ‘Indirect payments’: real budget held by a third party: e.g. a user-controlled trust, voluntary or private sector organisation with CQC registration, who manage it on the individual’s behalf with input from them ... all possible in a health context

5. Outline of personalisation in social care: Individual completes a ‘self-assessment questionnaire’ The assessment is scored based on the level of need identified in the questionnaire, and converted into an indicative budget using a Resource Allocation System(RAS) A support plan is designed, with involvement from the individual, based on the indicative budget The support plan must be agreed – Funding Panel The arrangements are implemented and are subject to regular review

6. Legal basis of personalisation – social care NO CHANGE to the fundamental law governing assessment and entitlement to community care support – expansion of self-directed support/personal budgets is essentially policy laid over the existing legislation Person-centred assessments/care plans have been around for decades; legally required at least since 2004 Direct payments for social care can already do what is intended for personal budgets 1997: power for local authorities to provide them 2003: duty to provide them if people opt for services as DPs 2009: extended to additional groups incl those lacking capacity ‘Indirect payments’ by a local authority to a third party has been legal for much longer, used to make support packages more self-directed/personalised

7. Legal basis of personalisation – healthcare Also nothing new about the principle of making assessments/ provision person-centred, and giving the individual choice In the context of continuing healthcare: CHC National Framework – mandatory guidance (2007; revised 2009): - para 33 (Core values and principles): ‘The process of assessment and decision making should be person-centred.’ - para 38: ‘PCTs should commission services using models that maximise personalisation and individual control and that reflect the individual’s preferences as far as possible. It is particularly important that this approach should be taken when an individual who was previously in receipt of an LA direct payment begins to receive NHS continuing healthcare; otherwise they may experience a loss of the control they had previously exercised over their care.’ NB also Supporting People with Long Term Conditions: Commissioning Personalised Care Planning, and Valuing People Now (re. learning disabilities) must be followed in the CHC context and have strong emphasis on personalised approaches

8. Legal basis of personalisation - healthcare ss1 & 3 NHS Act 2006: ‘PCTs must determine local health needs and determine what services are to be provided to meet those, having regard to the resources available to them’; to provide services ‘to such extent as [the PCT] considers necessary to meet all reasonable requirements’ -i.e. duties are just general ‘target’ ones for healthcare for the local population as a whole Contrast with specific local authority duties to assess and meet an individual’s eligible needs, enforceable by the individual NHS – no obligation to give user choice/control/direct payments Any NHS body can offer a personal health budget (but not necessarily direct payments – see below) New right from April 2014 for everyone receiving CHC to request a personal health budget, including a direct payment (DH discussion paper on CHC PHBs, updated July 2012). But NB: right to request it but not necessarily to get it unclear to what extent PHB actually ensures choice/control to the user

9. Personal health budgets – direct payments Generally unlawful in NHS context: Garnham and Harrison v SoS for Health [2009] EWHC 574 (Admin) BUT direct payments for health now permitted in approved pilot site PCTs/CCGs, under the Health Act 2009 / NHS (Direct Payments) Regs 2010 Arrangements with local authorities / PCTs ‘subsidising’ DPs packages – s.28A NHS Act 1977 (now s.256 NHSA 2006) – especially in jointly funded packages But recent clarification that in jointly funded packages where NHS body not registered for DPs, the health element of funding can’t be paid to the individual – may have to use agency provision for that even though local authority element is via DPs A direct payments support organisation may act as an agent and help the individual manage the direct payment – a ‘managed account’

10. Personal health budgets – notional budget or indirect payments via a third party Notional budget: Patient is aware of the treatment options within a budget constraint and of the financial implications of their choices. NHS underwrites overall costs and retains all contracting and service coordination functions. Indirect payments via a third party: Third party can be a private nursing or other agency, or any voluntary organisation, or an individual carrying on a trade or business It may be an ‘Independent User Trust’ or care agency for one person or more, egGunter v South-Western Staffs PCT [2005]: “It seems to me that Parliament has deliberately given very wide powers to PCTs to enable them to do what in any given circumstances seem to them to achieve the necessary provision of services. I have no doubt that this could involve the use of a voluntary organisation such as an Independent User Trust as the supplier.

11. Personal health budget pilots PCTs and CCGs had to apply by mid-2012 Over half of PCTs nationally involved Different pilot sites testing PHBs for different conditions/groups. Commonest:- Continuing healthcare (some including end of life care) Disabled children, young people in transition – NB some are included in the SEND pathfinders pilots – testing integration of health, education and care support in line with Green Paper/Children and Families Bill Long-term conditions, COPD Mental health Some approved to provide direct payments Five interim reports so far; final evaluation was due Oct 2012 Early indications that PHBs are beneficial and relatively easy to implement in CHC context, particularly for those transferring from social care DPs Other indications so far are mixed; slow progress implementing, particularly in integrating health/social care

12. Personal health budgets within CHC pathway Person assessed as eligible for NHS continuing care Level of need is assessed and agreed; NHS CHC team discusses option of a PHB, individual/carer agrees ‘Indicative budget’ is given Care planning process led by the individual/their carer in partnership with broker and/or NHS CHC team Care plan signed off by NHS and budget holder Personal health budget is set Individual selects which way the budget will be delivered: direct payment, notional budget or 3rd party Care and support is arranged and delivered Review to ensure needs are being met If direct payment, financial review to ensure the PHB is being used as agreed within the care plan

13. What personal health budgets can be spent on In theory, ‘any services or care that meets an individual’s agreed health and well-being needs’ (DoH) Therapies and other stand-alone services: Private gym instead of traditional physiotherapy Singing lessons instead of physiotherapy to increase lung capacity and control in people with COPD (D0H example) Counselling But complementary therapies? Osteopathy, homeopathy? Not: Alcohol, tobacco, gambling, repaying debts, anything illegal Emergency care, normal GP consultations, prescription medication Probably not elective surgery

14. What personal health budgets can be spent on In a continuing care context (including joint packages with local authority): Personal assistants to provide care in the home Employed directly through direct payments Or provided through third party provider, but with (more) choice about which provider, and/or which staff are recruited or come into the home Existing staff (eg employed thro’ social care DPs) can transfer to 3rd party provider if become fully NHS funded Need to cover all associated costs, might include: care coordinators, brokers, support planners financial intermediaries if needed to hold funds recruitment, training Tax, NI, sick pay, maternity pay and all employment costs NB carers’ needs might also be met through a PHB Residential care – yet local authority DPs can’t fund this

15. Topping up? The individual cannot add their own money into the personal health budget. The personal health budget is supposed to cover the complete package. Not supposed to have private provision alongside NHS provision through a PHB on the same ‘site’ – avoid obvious two-tier system eg one patient getting better treatment than another in the next bed However, permitted to pay for ‘extra services’ eg ‘massage or more physiotherapy than your doctor thinks is necessary to improve your health’ (DoH, PHBs FAQs) – must be separate What about more hours of care than PCT/CCG is prepared to provide for within a PHB? How can this be separate?

16. Experiences of personal budgets – social care The amount isn’t enough to buy the same services that were previously provided directly by the local authority Social workers unable to explain how the allocation of money relates to meeting needs – lack of transparency from Resource Allocation Schemes (RASs) No option of staying with directly provided services – this is presented as the new way of doing things Individual and/or their family expected to do all the planning and arranging that was previously done by social workers – major issue for complex needs ‘Deflators’ applied to the amount of the personal budget to reflect input that family/voluntary carers are expected to provide – lack of transparency or checking that they want to or it is in the person’s best interests Failure to assess and meet carers’ needs in their own right; false economies due to carers’ inability to sustain role

17. Experiences of personal budgets – social care Hourly rate insufficient to get and retain properly skilled staff who will stay in post, especially where needs are complex e.g. challenging behaviour Restrictions on what you can or can’t spend direct payments on; money clawed back if you don’t spend it in a certain ‘window’ Day and respite services being closed, substitute provision can’t be obtained locally for the amount provided in personal budget Large private sector providers taking over the management of direct payments packages, eg functions around payroll, recruitment and more; dubious level of real choice/control Overall sense of duty to meet assessed needs being converted into a mere right to have an allocation – individual takes on the uncertainty of whether or not they meet their needs with that amount Greatest challenges are for those with higher and more complex needs

18. Experiences of personal health budgets – pilots User experiences: Similar issues/disputes about hourly rates and what is or isn’t included – resources pressures Similar issues about carers – failure to assess and meet their needs (eg through their own PHB), despite strong emphasis in para.45 of National Framework for CHC Lack of choice of third party provider – assumption that must use one on local NHS preferred provider list If individual does have a preferred provider, having to go through lengthy tendering process which focuses overwhelmingly on cost rather than quality/suitability

19. Experiences of personal health budgets – pilots Implementation experiences: Difficult (understatement) to integrate processes between health and social care – but various approaches being tried How to set budgets – inconclusive about different options: Based on existing amount spent on individual Individual needs assessment (by whom?) Outcomes-based approach Combination Difficulties about how to deal with family / voluntary input to care package May not want to continue doing it Can they be employed? May need to be specific rules developed to deal with this Costs: see Third Interim Evaluation Report: http://www.york.ac.uk/inst/spru/pubs/pdf/PHBEinterim3.pdf

20. Experiences of personal health budgets – pilots Overall sense that NHS bodies/professionals lag behind local authorities in terms of processes, experience, mindset, for developing and managing care packages in the community Nurses/clinical staff unaccustomed to coordinating/care managing role – they aren’t social workers Unaccustomed to individual support planning Difficult to shift assumptions that clinician knows best BMA (Nov ’12): ‘doctors remain unconvinced of the benefit of PHBs and therefore broadly unsupportiveof their introduction’ ‘Doctors are concerned that PHBs will make it more difficult for the NHS to control costs and that they will not improve clinical outcomes for patients’

21. Imminent developments April 2013: CCGs will have responsibility for delivering PHBs April 2014: All CCGs will need to have the capability and capacity to deliver PHBs in CHC context. May be by: developing the capacity in-house developing cluster capacity commissioning a third party Early 2013: Children and Families Bill to be introduced to Parliament; implementation mid-2014 onwards: All children with SEN and disabilities to have integrated Education, Health and Care Plan covering needs from birth to age 25 (Following on from Individual Budget pilots and Pathfinders) From April 2014 families children with an EHCP will have the right to request a personal budget for the support entailed

22. Biggest challenges/obstacles to extending personalisation in health (as opposed to just PHBs) Culture change for NHS bodies and professionals Uncertainty over local structures from NHS reform agenda Those with the most complex and multi-agency needs are most likely to fall through the cracks, ... and perhaps most of all: Integration of health and care (and other things)

23. Kate Whittaker Public law and community care legal consultant kate.whittaker2@googlemail.com London Health Network Event, Choice Support Wednesday 21st November 2012