Personal Health Budgets Inclusion London – May 2014

1. Personal Health Budgets Inclusion London – May 2014 Smriti Singh Regional Advisor (London)

2. Content • Definitions, pilot programme, national policy • How does it work? • Legislative change and guidance • Continuing care/ continuing healthcare • Beyond continuing care • What does this mean for user-led organisations? • A personal health budgets story • Questions & discussion

3. Definitions, pilot programme, national policy, related concepts, rules

4. What is a personal heath budget? A personal health budget is an amount of money to support a person’s individual health and wellbeing needs, as agreed between the individual and their local NHS team

5. Five essentials Thepersonwiththepersonalhealthbudget(ortheirrepresentative)must: 1. beabletochoosethehealthoutcomestheywanttoachieve 2. knowhowmuchmoneytheyhavefortheirhealthcareandsupport 3. beenabledtocreatetheirowncareplan,withsupportiftheywantit 4. beabletochoosehowtheirbudgetisheldandmanaged 5. beabletospendthemoneyinwaysandattimesthatmakesensetothem,asagreedintheirplan.

6. Personal health budgets – Accelerated development programme

7. National pilot programme • PilotprogrammesetupinresponsetorecommendationinDarzi Review • Review,tounderstandhowpersonalisationcanworkinhealth • Pilotfrom2009to2012 • InvolvedaroundhalfofthePCTsinthecountry.20ofthosepilotsites(mostlyindividualPCTs,somejointareas)werecalled‘in-depthevaluationsites’andprovidedmostofthedatafortheevaluation • Groupsincludedinthepilot:COPD,Diabetes,Stroke,Maternity,SubstanceMisuse,Continuinghealthcare • Datafrom2,700patients,aroundhalfofwhomwereinacontrolgroup(receivedtraditionalservices)andhalfwerehadpersonalhealthbudgets(indifferentforms) • PilotevaluatedbyexternalteamofacademicsfromtheuniversitiesofKent,LSE,YorkandImperial

8. National pilot programme • Evaluationteamproducedfiveinterimandonefinalevaluationreport • Verythoroughanalysisanddetailedsetoffindings • Someveryclearfindings: • better care related quality of life, and psychological well being (using ASCOT indicator) • no change in health conditions (no improvement but no deterioration either) • lower hospital admissions & less use of other NHS services e.g. GPs • worked well where people had choice of deployment options & flexibility over how money could be spent (outcomes were worse where this was not the case). • All of the reports: www.phbe.org.uk

9. National policy • By April adults eligible for NHS continuing healthcare and parents of children eligible for continuing care will have the ‘right to ask’ for a personal health budget, including direct payments • By October 2014, for some, this will be a ‘right to have’ • NHS Mandate says that by April 2015, anyone who has a long term physical or mental health condition, who can benefit, should have the option to have a personal health budget. • PHBs in CCG assurance framework (domain 2).

10. Legislation & guidance • Health Act 2010 allowed pilot sites to make direct payments • NHS direct payments regulations & guidance for pilot sites in place • New NHS direct payments regulations (with amendments) now in place • The regulations are supported by NHS Direct Payments guidance • PHB sustainability guidance expected in January 2014 • Guidance on the ‘right to have’ is expected later on this year.

11. NHS Direct payments regulations • Secondary legislation. Guidance will set out more detail. • Sets out rules around direct payments (other forms of PHB did not require legislative change) including…. • Who? – can’t refuse because of lack of capacity; must offer support to manage direct payments; must refuse in writing, giving reasons; patient can ask CCG to reconsider. How? – in a separate bank account; must have agreed outcomes, set out in a signed care plan… • What? - direct payments can and can’t be used for. Not for anything illegal, gambling, alcohol, tobacco, debt repayment. Also can’t employ friends and close family members living in the same home. • When – state how minimum frequency for monitoring; what to do if direct payments unused; when they can be stopped and taken back.

12. How does it work?

13. Related concepts

14. How it can work

15. Personal health budgets – Accelerated development programme

16. Related ideas and initiatives in the NHS • The House of Care • Self-care/ self management • Choice • Social of disability • Co-production

17. Related changes in health and social care • Personal (social care) budgets • SEND and Children & Families Bill

18. Continuing care

19. Continuing care • NHS continuing healthcare is the name given to a package of care which is arranged and funded solely by the NHS for individuals outside of hospital who have ongoing healthcare needs. You can receive continuing healthcare in any setting, including your own home or a care home • ‘Continuing care’ - care given over an extended period, including care provided by social services. • continuing healthcare is provided when an individual has ‘primary health need’ – NHS pays for all care • Developed through case law • Approx 2.5-3% of NHS budget; around 56,000 people in the county (about 15,000 in London) • National Service Frameworks for continuing healthcare AND separate for children’s continuing care.

20. Why continuing healthcare first? • Janet is a 45 year old disabled woman, she is a wheelchair user • Her council initially set up home care with a care agency • Didn’t know who was coming or when • Now receiving direct payments (cash in lieu of services) • Janet employs a personal assistant - significantly better quality of life, and feels more in control. • Her health deteriorates and she becomes eligible for NHS (fully funded) continuing care • The PCT cannot legally give her a direct payment • Instead the PCT sets up care package through an agency • Janet is unhappy and feels she is no longer in control.

21. PHBs in continuing care • No change to continuing car process – eligibility assessments etc have to remain the same • Budget-setting based on home care spend • Most CCGs using local authority partner(s) to make and monitor direct payments • Support planning done by continuing care assessors/ case managers. Some using independent support planners (but need clinical oversight) • Gradual uptake amongst individuals • All London CCGs or in the process of getting ready to be able to offer personal health budgets for adults eligible for CHC.

22. Beyond continuing care…

23. Beyond continuing care • NHS Mandate commitment and further policy and strategy work underway • A number of ‘Going Further Faster’ site working on personal health budgets for long term conditions • NHSE working with the integration pioneers • PHB Delivery Team work on workforce development • A number of CCGs (including some in London) working on personal health services for people who use mental helath services.

24. Implications…

25. Ensure people can benefit from personal health budgets: • Find out what is happening in your CCG – are they ready to respond to the ‘right to ask’? • Inform local people of the ‘right to ask’ for continuing healthcare patients and what it means • Understand the rights of patients and families and support them if they want personal health budgets • Ensure that personal health budgets are implemented in a way that ensures they benefit people • Keep personal health budgets on CCGs’ agendas and shape local personal health budgets beyond continuing healthcare • Ensure that the debate around personal health budgets is informed and people’s voices are heard. Help ensure PHBs are done well

26. Help CCGs with.. • Provision of PAs and PA support services • Good support planners and support planning training • Direct payments support/ brokerage • Peer support & help to set up peer groups • Support planning training • Third party services • All of the above – appropriate for people with complex health needs and understand fit within NHS.

27. A PHB story

28. Questions and discussion…

29. 1.    What support is there available to help people manage their Personal Health Budgets and are there resources  there available that will enable DDPOs to deliver this support ? • 2.    What kind of partnership does NHS England envisage developing with local user led DDPOs • 3.    What do DDPOs need to do to ensure that CCG and other commissioning bodies recognize their experiences, skills and expertise in deliver user led support and services Questions

30. To find out more: • www.personalhealthbudgets.england.nhs.uk • Twitter:@NHSPHB • Email: england.personalhealthbudgets@nhs.net • Email: smriti.singh@symbiconsulting.com