Personalisation in health and social care services

SHA Conference Wednesday 7th May 2008

Toynbee Hall28 Commercial Street, London E1 6LS

with Neal Lawson Compass

Frances Pearson,

Caroline Glendinning, Professor of Social Policy and Assistant Director Social Policy Research Unit, York University. Caroline has been heavily involved in the evaluation of the Individual Budget Pilot Projects and the report of the evaluation is currently being considered by the Department of Health.

Dr Guy Daly Coventry University.

The following is based on my understanding of the situation following the SHA seminar 7th May 2008 and also draws on the work of Jon Glasby at Birmingham Health Services Management Centre. Thanks are due to our speakers and the participants in our seminar.

Direct payments … individual budgets …personal budgets … what’s the difference?

Direct payments – traditional assessment; convert ‘hours’ of care into £; typically used to employ personal assistants

What is the difference between personal budgets and individual budgets?

Personal Budgets refers to an upfront, transparent allocation of social care funding; user control over deciding how this is used and greater flexibility in how it can be used. . This could be managed by councils or another organisation on behalf of individuals should they choose, or paid as a direct payment, or a mixture of both.

The Individual Budgets Pilot is like Personal Budgets but testing the combination of a number of funding streams to give a more joined up package of support. The funding streams involved in the pilot are Access to Work, Disabled Facilities Grant, the Independent Living fund, Integrated Community Equipment fund, Supporting People fund as well as social care money.

In each case there is an assessment – hopefully only one – which forms the basis of a financial package considered sufficient to meet the individual’s needs for social care. Decisions about how that money is spent are then made either directly by the person concerned or by a person or organisation acting with or for them. Take up of Direct Payments has been highest among working age disabled people, but much lower among people with learning disabilities or mental health problems or older people. In most case they have actually had the money and employed their own personal assistants. . The money could be in the hands of a social care organisation, and the people employed might work for that or for another organisation. The important question is about who controls the decision making. Because personal and individual budgets can be used in more flexible ways, they may also be used to pay friends and close relatives for the support they provide.

Choice and control are fundamental to …

  • Citizenship
  • Independence
  • Redressing power inequalities
  • As outcome of social care
  • As vehicle for remaking citizenship (Demos)

But … conditions for exercising choice and control

  • Stability/certainty – it may be more difficult to exercise choice and control for a person whose needs fluctuate or deteriorate or move from one authority to another on the other hand, the flexibility of personal/individual budgets may allow support to be ‘saved’ up for when the person needs it rather than being delivered as a standard package regardless of changes in day to day needs.
  • Information, brokerage ‘information asymmetry’ needs to be addressed
  • Awareness of options –
  • Supply of services – is there a sufficiently large and diverse market in care to enable direct payment recipients to purchase the support they need?
  • purchasing leverage – local authorities are monopoly purchasers. Individual purchasers will have a very different relationship with suppliers of services. There will be both opportunities and risks for the independent and voluntary sector providers of services
  • specialist needs – some people may have no choice if their specialist needs can only be met by one provider/professional
  • opportunities for ‘exit’ – this is crucial to the competition element of choice.

Other risks and challenges

  • Legal constraints – Employment of people in particular brings with it a panoply of legal obligations, including PAYE and the need to comply with the Manual Handling regulations.
  • Choice not to choose
  • Transferring risk to users. Local authorities have responsibilities to safeguard vulnerable adults, and have a regulated workforce
  • Potential impact on carers and families
  • New management tasks
  • New obligations
  • Risks to equity
  • Information/access
  • Transparency

These constraints will clearly play differently with different sort of people. There is a lot of interest in the learning difficulties field. “In Control” has led developments with younger learning disabled people. .

  • These developments need to be seen within the context of already substantial private provision of social care
  • Rising eligibility thresholds – substantial/critical needs only in many places. There is no geographical equity in social care.
  • Assets test that determines access to public funding for residential care
  • 118,000 fund own care home place
  • Charges for community services
  • 1 in 4 pay means tested charges
  • ‘Topping up’ LA-funded care
  • 1 in 4 ‘top up’ insufficient local authority care
  • ‘ Self-funders’ – ineligible/choose not to use LA care -? 150,000 older people. Most self funders get no assistance from public services in their decisions about what services to pay for. About half total spending on personal social care for older people comes from private contributions – total £5.9bn
  • Unpaid care from carers has been valued at £87bn a year, four times what was spent by local authorities – more than total cost of NHS. Although that calculation was based on paying £14.50 an hour for what is presently done for free it does emphasise the enormity of the problem for those who say that social care should be free like health care.

Relation to healthcare

Caroline Glendinning et al found in 2000 that social care money (direct payments) was being used to pay PAs to carry out tasks traditionally defined as health care (such as injections, dressings, footcare, tissue care, bowel and bladder management etc).

• Although direct payments were blurring the boundary between health and social care, this was of potential concern to everyone involved (albeit it for different reasons), including public service managers, front-line practitioners, the disabled people themselves and their PAs.

• Disabled people did not find the distinction between health and social care meaningful – both were combined within a broad area of help that they thought of as personal care. Direct payments allowed both choice and control, and the integration of the different (health and social care) elements of personal care.

There could be scope to extend direct payments to some forms of health care – in particular, to people with complex needs already using direct payments for their social care, continuing health care/long-term care, health care equipment and palliative care. A major problem at the moment is the widespread refusal to allow people who have been receiving direct payments or personal budgets, but who become eligible for Continuing NHS Care to continue with their previous support arrangements. The new guidance on Continuing Care specifically precludes its deployment as a direct payment. This is very distressing for people who are seriously ill and risk losing the relationships with carers/personal assistants which they have built up over a considerable time. It also risks deterring potentially eligible people for applying for NHS Continuing Care and therefore ‘cost-shunting’ healthcare costs onto local authorities. One fundamental issue which needs to be confronted is the supposed ban on top up payments in health care. Patients who want to pay for drugs which are not available through the NHS are sometimes told that the statutory requirement that NHS services are to be provided free at the point of delivery unless specifically provided for otherwise by statute (eg, prescription charges) means that if they pay for their own treatment nothing will be provided by the NHS. This supposed principle does not seem to be applied to people who pay privately to have their toe nails cut. or buy additional physiotherapy or health-related equipment .

Early results from social care are so positive that the implications for health seem worth exploring to see if similar results might be possible here too. Not only are individual budgets delivering their primary purpose of giving people more power and control over their own support, they also seem to be leading to overall improvements in well-being and to greater efficiency (Poll et al., 2006). There is considerable overlap between people who use social care and those who use the NHS, with such connections leading to ongoing scope for tensions and/or innovation. A substantial proportion of the NHS budget is spent on people who have conditions that are long-term in nature, and this includes people who already receive direct payments for their social care (Waters and Duffy, 2007). But while there are indeed considerable overlaps, the policy and practice issues are actually very complex. We need more evidence (eg from the National Evaluation of the Individual Budget Pilot Projects) on the problems/issues at the personal budget/NHS interface, for a start.