www.pssru.ac.uk

Personalisation and Respite ProvisionEvidence from England, UK

Dr Karen JonesUniversity of Kent, England

2

Overview

1. Social and health care system in England, UK

2. Personalisation agenda in England, UK

3. Respite Provision in England, UK

4. Impact of personalisation on care recipients and carers

5. Lessons learnt so far

6. What happened after the evidence?

7. What next for personalisation in England, UK?

3

Social and health care system in England, UK

Social carePersonal 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 care1. Mainly provided by the NHS - Care is based on clinical need, not ability

to pay2. Charges associated with eye tests, dental care and prescriptions 3. 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 differentlyCare recipient and carer sit at the centre of all decisionsGiving more choice and control how needs are metUsing existing money more efficiently - Not new money

Three important policies underlie the personalisation agenda

1. Direct payments (Social Care)2. Personal budgets (Social Care) 3. Personal health budgets (Health Care)

6

Direct Payments in Social CareCash 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 people2001 – Act further extended to parents of disabled children and carers2003 – A duty to provide direct payments to those who wanted one2009 – Extended to persons appointed to receive DP on behalf of individuals

Care recipientMainly used for personal and domestic support (including short-term respite in care homes) agreed in a care plan

Cannot fund long-term residential careCannot 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 carersDomestic helpEquipment that would have been provided by LACollege coursesSitting 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 budgetsSocial Care and Health Care

Personal budgets in Social CareFirst 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 CareFirst 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 carersCarers 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 includesEmploy a gardenerRelaxation treatmentFunding for a hobbyEquipment 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

Personal Budgets

Assess

Budget

Support Plan

Review

Plan approved

Arrange support

12

Respite care provision in England, UK

Traditional service–led approach Professionals make the decision as to what respite care is needed

Day care servicesPaid carers to come into family homeResidential respite care

Personalised approach More choice and control over respite care – personalised and flexible to meet the needs of the whole family

Day care servicesPaid carers to come into family homeResidential respite careBreaks away – with or without the care recipientPay for a support worker to go on holiday with familyLeisure activitiesSpa daysCollege 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 collectionIn-depth interviews with budget holders, carers and organisational representatives

Quantitative data collectionBaseline 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 useAverage = £11,150 per year

17

Impact of IBs (personal budgets) on care recipientsImpact of IBs on outcomesOverall better social care outcomes and high perceived levels of control

Mental health cohort - IB group reported higher perceived quality of lifeIBs 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 IBsSome 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 KentCaroline 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 studyTo 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 agreed74% female57% carers aged 45-59 years50% provided help to an adult child18% provided help to a partner

Characteristics of people cared for 54% learning disabilities26% older people15% physically disabled5% mental health

20

Impact of personal budgets (individual budgets) on carers

Main quantitative findings – Structured interview

1. Positive effects of IBs - QoL and social care outcomesa. Being satisfied with support planning processb. Good relationship with person cared forc. Had a break with person cared ford. Fewer hours spent caring

2. No evidence of higher formal support costs

3. 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, LondonDominic King

23

Evaluation DesignControlled 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 collectionInterviews with budget holders, carers and organisational representatives

Quantitative data collectionOutcome 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 useAverage 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 carersPHBE1 - 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 findingsCarers providing assistance to a PHB holder were more likely to:1. Report better quality of life and perceived health;2. Lower instances of having their health affected by their caring role;3. 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:

1. The immediate impact on the workplace;2. Training needs for frontline staff;3. Identify the concerns of the middle managers that could be

communicated to other representatives in the local area;4. Identify and address concerns among frontline staff that could have

the potential to delay the implementation process

Implementation is a key element for good outcomesAcknowledging the cultural changeEffective support planning for both care recipient and carerSufficient level in the budgetFlexibility, 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 recipientsKatie (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 developmentContinued 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 careNovember 2013: DH announced 14 local areas as Integrated Care Pioneer – lead the way in delivering joined up careSeptember 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