Overview Social and health care system in England, UK Personalisation agenda in England, UK

1. Personalisation and Respite ProvisionEvidence from England, UKDr Karen JonesUniversity of Kent, England

2. Overview Social and health care system in England, UK Personalisation agenda in England, UK Respite Provision in England, UK Impact of personalisation on care recipients and carers Lessons learnt so far What happened after the evidence? What next for personalisation in England, UK?

3. Social and health care system in England, UK • Social care • Personal care and practical support for adults as well as support for their carers • Majority of Local Authorities provide care for people who are categorised as having either ‘critical’ or ‘substantial’ levels of need • Fair Access to Care Services – banding system that LAs use to assess need • Social care is means-tested: Publicly-funded care for individuals with assets of below £23,500 (i.e. self-funder market and informal carer population) • 2013-2014: Around 1.2m people are receiving services • Health care • Mainly provided by the NHS - Care is based on clinical need, not ability to pay • Charges associated with eye tests, dental care and prescriptions • Private health care and complementary treatments are available

4. Informal Care • Around a million people provide unpaid care for more than 50 hours per week (Carer’s UK, 2011) • A number of policy developments have helped shaped services for carers • Carer (Equal Opportunities) Act 2004 • Right to know about assessments • Right to have needs considered • Carers Strategy (2008) which was revised in 2010 • £400m over 4 years to provide breaks for carers • Support carers to remain healthy • Personalised support for carers • The Care Act (2014) • Strengthens the rights and recognition of carers in social care • Clear right to receive services

5. Personalisation Agenda in England, UK • Personalisation • Thinking about support service differently • Care recipient and carer sit at the centre of all decisions • Giving more choice and control how needs are met • Using existing money more efficiently - Not new money • Three important policies underlie the personalisation agenda • Direct payments (Social Care) • Personal budgets (Social Care) • Personal health budgets (Health Care)

6. Direct Payments in Social Care • Cash payments (determined by LAs following an assessment) for individuals eligible for social care services in England • First introduced in 1997 under the Community Care (Direct Payments) Act – power (rather than duty) to make payments to working age disabled adults • 2000 – Act extended to include older people • 2001 – Act further extended to parents of disabled children and carers • 2003 – A duty to provide direct payments to those who wanted one • 2009 – Extended to persons appointed to receive DP on behalf of individuals • Care recipient • Mainly used for personal and domestic support (including short-term respite in care homes) agreed in a care plan • Cannot fund long-term residential care • Cannot be used to employ relatives living in same household (except in special circumstances)

7. Direct Payments for Carers • Individuals assessed as needing services because they provide a substantial amount of care to someone aged 18+ • Aim is to support the well-being and health of informal carers • Domestic help • Equipment that would have been provided by LA • College courses • Sitting service to provide respite • Around 350,000 carers receive services; of which approximately 110,000 are receiving self-directed support • 70,000 carers currently receive a direct payment. Provisional estimates indicate that the number has risen to 80,000 carers

8. PERSONAL BUDGETS IN SOCIAL AND HEALTH CARE

9. Personal budgets • Social Care and Health Care • Personal budgets in Social Care • First proposed in 2005 as individual budgets • Greater transparency over level of budget • Greater flexibility over how it is used; • Offering choice in deployment options (in addition to DPs) • Combined a number of funding streams (supporting people funds, access to work; disabled facilities grant) • Personal budgets contain only social care funding • Personal health budgets in Health Care • First proposed in 2008 as a way of meeting health and well-being needs • Delivery better health and wellbeing outcomes through choice and control; • Greater transparency over level of budget; • Greater flexibility over how it is used; • Offering choice in deployment options (in addition to DPs)

10. Personal budgets for carers • Carers can qualify for a personal budget in social care through a carer’s assessment • Purchase support that carers are assessed as needing (including respite) • Variation between local authorities whether the personal budget is a one-off payment (i.e. equipment to help with the caring role) • Purchased support includes • Employ a gardener • Relaxation treatment • Funding for a hobby • Equipment to help with the caring role • Personal health budgets – Support for carers is calculated within the care recipient budget • PHBs cannot be used to pay informal carers living in the same household (there are exceptional circumstances)

11. Personal budgets process Assess Review Budget Personal Budgets Arrange support Support Plan Plan approved

12. Respite care provision in England, UK • Traditional service–led approach • Professionals make the decision as to what respite care is needed • Day care services • Paid carers to come into family home • Residential respite care • Personalised approach • More choice and control over respite care – personalised and flexible to meet the needs of the whole family • Day care services • Paid carers to come into family home • Residential respite care • Breaks away – with or without the care recipient • Pay for a support worker to go on holiday with family • Leisure activities • Spa days • College courses for both care recipient and carers

13. RESEARCH EVIDENCE

14. Evaluation of the individual budget pilot programme • (IBSEN: 2006-2008) • 13 local authority pilot sites were involved in the programme • Randomised controlled trial examining the costs, outcomes and cost-effectiveness of IBs (personal budgets) compared to conventional services • 959 care recipients participated in the evaluation • 510 recruited to the individual budget group (offered a individual budget) • 449 recruited to the control group (receiving conventional services) • Physical disability – 326 (34 per cent) • Older people – 263 (28 per cent) • Learning disability – 235 (25 per cent) • Mental health – 131 (14 per cent)

15. Research Team Caroline Glendinning, David Challis, José-Luis Fernández, Sally Jacobs, Karen Jones, Martin Knapp, Jill Manthorpe, Nicola Moran, Ann Netten, Martin Stevens, Mark Wilberforce Social Policy Research Unit (York) Personal Social Services Research Unit (Kent, LSE, Manchester) Social Care Workforce Research Unit (Kings College London)

16. Data collection • Qualitative data collection • In-depth interviews with budget holders, carers and organisational representatives • Quantitative data collection • Baseline data collection • Demographic information • Current support arrangements • Outcome interviews at 6 months • Care-related quality of life (ASCOT) • Single item measuring quality of life • Psychological health (GHQ12) • Health and social care service use • Analysis of IB support/care plans – costing and service use • Average = £11,150 per year

17. Impact of IBs (personal budgets) on care recipients • Impact of IBs on outcomes • Overall better social care outcomes and high perceived levels of control • Mental health cohort - IB group reported higher perceived quality of life • IBs were viewed as an opportunity to access more appropriate support • Physically disabled cohort – IB group reported higher quality care, more satisfied with help • IBs had given an opportunity to build better quality support networks • Older people – IB group reported lower psychological well-being • ‘Additional burden’ of planning and managing support. May take time for older people to develop confidence to assume greater control • Learning disability cohort – IB group more likely to feel in control over daily life • Cost effectiveness of IBs • Some evidence that IBs were cost–effective, particularly for people receiving mental health services and younger individuals with a physical disability

18. The Individual Budgets Pilots Projects: Impact and Outcomes on Carers in England (IBSEN Carers) • Karen Jones and Ann Netten – PSSRU, University of Kent • Caroline Glendinning, Hilary Arksey, Nicola Moran and Pavaneh Rabiee – University of York • IBs were initially implemented without reference to the separate needs and rights of informal and family carers. • Budgets could be expected to affect carers as well as the service users they are supporting • Overall aim of the study • To explore the identify the impact and outcomes of IBs on unpaid relatives and other informal carers

19. Design • IBSEN study collected informal carer information from the cared for • 208 carers were invited to participate; of which 163 agreed • 74% female • 57% carers aged 45-59 years • 50% provided help to an adult child • 18% provided help to a partner • Characteristics of people cared for • 54% learning disabilities • 26% older people • 15% physically disabled • 5% mental health

20. Impact of personal budgets (individual budgets) on carers • Main quantitative findings – Structured interview • Positive effects of IBs - QoL and social care outcomes • Being satisfied with support planning process • Good relationship with person cared for • Had a break with person cared for • Fewer hours spent caring • No evidence of higher formal support costs • No evidence of lower carer costs • Semi-structured interviews with carers suggested that positive effects were due to feeling more engaged within the process • IB support plans for care recipient – More money was spent on short breaks among IB budget holders who had an informal carer

21. Evaluation of the Personal Health Budget Pilot Programme in England (PHBE1) • Pilot programme was supported by a three-year evaluation (2009-2012) • Overall 64 pilot sites at outset • 20 form the in-depth evaluation with the remainder forming the wider cohort • Overall aim of the evaluation was to provide information on: • How personal health budgets are best implemented • How well personal health budgets work • Where and when they are most appropriate • What support is required for individuals

22. Research Team • PSSRU (University of Kent) • Julien Forder, Karen Jones, James Caiels, Elizabeth Welch and Karen Windle • Department of Social Policy(LSE, London) • Paul Dolan • Social Policy Research Unit (York) • Caroline Glendinning, Jacqueline Davidson, Kate Baxter and Annie Irvine • Imperial College, London • Dominic King

23. Evaluation Design • Controlled trial with a pragmatic design • Patient-level randomisation (whole site uptake) • Between group comparison (selective PHB uptake) • The evaluation covered: • NHS Continuing Healthcare • Diabetes • Mental health • Chronic Obstructive Pulmonary Disease • Stroke • Long-term neurological conditions • 1,000 people recruited to the PHB group • 1,000 people recruited to the control group

24. Data collection • Qualitative data collection • Interviews with budget holders, carers and organisational representatives • Quantitative data collection • Outcome interviews – Baseline and 12 months after consent • Care-related quality of life (ASCOT) • Health-related quality of life (HRQOL) using the EQ5D scale • Psychological health using GHQ12 • Subjective well-being • Primary care service use – GP medical records • Service use for 12 months before and after consent date • Secondary care service use – Hospital Episodes Statistics • Service use for 12 months before and after consent date • Analysis of PHB support/care plans – costing and service use • Average amount = £10,400 per year

25. Impact of personal health budgets on care recipients • Main quantitative findings • Personal health budgets associated with an improvement: • Care-related quality of life (ASCOT) • Psychological well-being (GHQ-12) • Implementation models • Budget holders know the resource level • Flexibility and choice as to services that can be purchase • Budget size • £1000 + budgets positive impact on ASCOT and GHQ-12 • Personal health budgets did not appear to have an impact on health or health-related quality of life over the 12 month follow-up period. • PHBs were cost-effective, particularly for the NHS CHC and mental health cohorts. Implementation and budget size also had an impact on cost-effectiveness

26. Impact of personal health budgets on carers • PHBE1 - Explore whether personal health budgets had an impact on informal care and on the caring role, compared to conventional service delivery • 282 participants from the main evaluation agreed that their carer could be contacted • 147 carers completed a postal questionnaire: 88 caring for a participant in the PHB group and 59 for a participant in the control group • Main quantitative findings • Carers providing assistance to a PHB holder were more likely to: • Report better quality of life and perceived health; • Lower instances of having their health affected by their caring role; • Report satisfaction with the support planning process • “It takes the pressure off of me. I’ll get a break which’ll mean that I’m not tired all the time... and I think that’s better for [son] as well that I’m not stressed out all the time” (carer).

27. Lessons learnt so far • Importance of acknowledging cultural change in organisations • Engagement with all representatives during the early implementation phase to explore: • The immediate impact on the workplace; • Training needs for frontline staff; • Identify the concerns of the middle managers that could be communicated to other representatives in the local area; • Identify and address concerns among frontline staff that could have the potential to delay the implementation process • Implementation is a key element for good outcomes • Acknowledging the cultural change • Effective support planning for both care recipient and carer • Sufficient level in the budget • Flexibility, choice and control • One size doesn’t fit all!

28. WHAT HAPPENED AFTER THE EVIDENCE

29. Personalisation in social care • Personal budgets (only social care funds) rolled out since 2008 • From 2013 - Every person eligible for publicly-funded Adult Social Care can have a personal budget • Around 600,000 people are receiving self-directed supported; of which approximately 140,000 clients are receiving a direct payment • Provisional current estimates – around 150,000 people are receiving a direct payment • Around 51,000 carers have received a personal budget (Carers Trust 2012)

30. Personal budgets (social care) for care recipients • “I have severe arthritis and a range of other health problems and as a result have very poor mobility. • I was allocated a personal budget which I really appreciate. • It has enabled me to buy the scooter and make the house modifications. • We now pay my daughter to be a carer and I have respite care in a residential setting of my own choosing”. • http://www.thinklocalactpersonal.org.uk

31. Personal budgets (social care) for carers • Deborah looks after her sister, who has Downs Syndrome, and her severely ill mother. • Both live with Deborah, who also works. Deborah has not had time-off from either her job or her caring role for many years. • Neither her sister nor her mother want to use traditional respite or day care. • Deborah used a carers personal budget to partly pay for having her garden redesigned. • She loves her garden and this gives her short breaks outdoors while still being on hand to look after her sister and mother. • http://www.salford.gov.uk

32. Personal health budgets • Personal health budgets are currently being rolled out • From October 2014 – individuals eligible for NHS Continuing Health have the right to have a personal health budget • NHS Continuing Healthcare – Package of care in England that is arranged and funded solely by the NHS • From 2015 – Personal health budgets continue to be rolled out among individuals with a long-term health condition

33. Personal health budgets (health care) for care recipients • Katie (who has Retts Syndrome) used at attend a day centre for adults with learning difficulties • “But it was not really the most appropriate place as due to staffing numbers, staff were unable to provide the required specialist care. For example when Katie had seizures”. • “The only other support we received was when Katie went into respite every other weekend. But again it is never real respite as should Katie be ill they were unable to cope” • “The situation was detrimental to Katie and too stressful for us, I tool voluntary redundancy and requested more support” • A PHB covers 153 hours of support from a personal assistant • “The consistency of care that Katie now receives means we have got to know the PAs and have become confident in their ability” • http://www.personalhealthbudgets.england.nhs.uk

34. What next for personalisation in England, UK • Continued impact of personal health budgets (PHBE2) • Address the affordability of personal health budgets within the system, and the scale of personalisation following the pilot programme • Continued impact on the workplace (including the workforce) • Market development • Continued impact on budget holders and carers • Further programmes have been announced to encourage integration of social and health care • June 2013: Better Care Fund-Encourage joint working between health and social care • November 2013: DH announced 14 local areas as Integrated Care Pioneer – lead the way in delivering joined up care • September 2014: Integrated Personal Commissioning Programme was launched – integrate health and social care funding

35. The evaluation of individual budges and the evaluation of personal health budgets were commissioned and funded by the Policy and Strategy Directorate in the Department of Health. The views expressed are not necessarily those of the Department of Health Are there any Questions? K.C.Jones@kent.ac.uk