Shifting Control for Better Lives Personal Health Budgets and the Law

1. Shifting Control for Better LivesPersonal Health Budgets and the Law

2. Working together • Participatory • Collaborative • Shared learning • No question is barred! • Respectful- hearing all voices • Space to think and debate • OK to laugh as well as to reflect on serious issues!

3. Outline of Key issues • What is a personal health budget and what’s its purpose? • What’s the “deal” between the NHS and the person? (what rules? What guarantees?) • What legal ways are there for someone to have control of personal health budget money if they don’t want or can’t have a direct payment?

4. Finding our focus...

5. Personal health budget-what is it? A personal health budget is an allocation of resources made to a person with an established health need ( or their immediate representative) The purpose of the personal health budget is to ensure the person is able to call upon a pre-defined level of resources and use these flexibly to meet their identified health needs and outcomes. The person must:  • Know how much money they have in their personal budget initially and then in an ongoing way • Be able to spend the money in ways and at times that make sense to them • Agree the outcomes that must be achieved with the money

6. Professional gift model • The underlying system of power: ‘we know best’. • Professionals and commissioners work out what they think we need. • They buy things they think will help. • We have to slot in. • We feel we should be grateful and stay as passive recipients. • We have not rethought power

7. Citizenship Model • Citizen at the centre • Services negotiated • Entitlements defined • Community fully engaged • Outcomes improved

8. Tilting the balance of power • Its about shifting power and creating an improved relationship • Central focus is improving the dialogue between the citizen and the professional to create: • Greater mutual respect & understanding • Better quality decision-making • Better outcomes • This should produce a Personal Plan which is co-signed by the citizen and professional

10. Is it legal for anyone to have a personal health budget? • It is both legal, and practically possible, for anyone to have a personal health budgetfrom continuing health care funding or other NHS money, provided your Primary Care Trust is willing to do this. It is though, not yet currently legal to be paid the money directly as a direct payment,(other than in the approved Department of Health pilot sites nationally.) You can find out if your Primary Care Trust is one of the pilot sites for direct payments by contacting the personal health budget pilot team through their web site. • In the meantime many people will need to find, or create, a "third party" to hold the money.

11. Is it legal for anyone to have a personal health budget? • So, there are other ways for some-one to legally have control over their funding and their personal support/care plan, without having a direct payment. What it needs is for your Primary Care Trust to agree to paying the money to a "third party", while allowing the individual, or their representative, control over how the funding is used to meet jointly agreed health outcomes, written into an authorised support/care plan.   • The detail about these options, were laid out in the department of Health's “First Steps" document, (Pages 32 to 35 “Personal health budgets First Steps” Department of Health 2009, lay out the options for how money can be held on some-one's behalf, while the Primary Care Trust decide with you how best it can be spent, to enable some-one to have support and treatment in the ways that work best for them.)

12. What if my funding changes to Continuing Health Care Funding? A Department of Health Continuing Health Care guidance letter, (Jan 2010), emphasises the importance of people not losing control even if their funding changes to health funding . For example as in this excerpt:   “The revised National Framework (for continuing healthcare) sets out a number of issues in relation to commissioning including: • “Commissioning 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 Local Authority direct payment begins to receive NHS Continuing Healthcare funding; otherwise they may experience a loss of the control they had previously exercised over their care.”

13. What if my funding changes to Continuing Health Care Funding? • “PCTs should also be aware of the personal health budgets programme as set out in “Personal Health Budgets: First Steps” and particularly that it is only Direct Payments that will be restricted to approved pilots. The other models of personal health budgets are available under existing powers for any PCT to use. • PCTs and LAs should operate person-centred commissioning and procurement arrangements, so that unnecessary changes of provider or of care package do not take place purely because the responsible commissioner has changed .” (Department of Health Continuing health care framework guidance letter Jan 2010)

14. What restrictions are there? What can’t money be spent on? Only a few things are excluded: • Emergency or acute services • The majority of primary care services (including visits and assessments of GPs) • Anything illegal • Gambling • Debt repayment • Tobacco • Alcohol (First Steps DH 2009)

15. What can money be spent on? • A direct payment may be spent on anything (with a few exceptions) that the person believes will meet their heath and well-being needs, and which is agreed by the PCT. PCTs should be careful not to exclude unusual requests without examining the proposal on a case- by- case basis- these may have significant benefits for people's health and wellbeing. • In some cases, it may be sensible for a PCT to agree a service which would normally be funded by Social Care, or another funding stream. If that service is likely to meet someone’s agreed health and wellbeing outcomes PCTs should not refuse to purchase this because it has been traditionally commissioned elsewhere. (DH Direct payments for healthcare information for pilot sites July 2010)

16. What can money be spent on? Underpinning principles: • Personal health budgets must uphold NHS values and be free at the point of delivery and not depend on ability to pay • They must support safeguarding and quality • They must support the tackling of inequalities and protecting equality • They must be voluntary (!) • They must support the making of decisions as close to the person as possible • They must support partnership working (First Steps DH 2009)

17. Ways to “hold” the money

18. Personal health budget-ways to “hold” the money Personal health Budgets can be held in a range of different ways:  including a real budget held by a third party, or (where legislation for a PCT to be an approved pilot site applies) healthcare direct payments. (As outlined in section 3.6. pages 32 to 35 of “Personal health Budgets First Steps” document- DH 2009) What is important is that the person knows how much money is available with which to plan at the start and then in an ongoing way; and that they can decide flexibly how to meet agreed outcomes. 

20. What do we mean by a ‘third party” • We often use the term ‘third party’ to describe one of the ways of having control of personal health budget money. It describes the ‘mechanism’ that enables the legal transfer of money from the PCT to an individual’s control where • a direct payment is not possible, (the Primary Care Trust may not be eligible to offer direct payments), • not desirable (the individual may not want a direct payment) • or not feasible (the individual may not be in a position to manage their own budget).

21. An independent user trust • An independent user trust is “ a commitment on the part of trustees to manage an agreed sum of NHS money in a way that puts the individual at the heart of decision-making and gives them choice and control in their life”. • R (Gunter) v SW Staffordshire PCT (2005) In 2005, Mr. Justice Collins ruled that it was legal for Rachel Gunter’s parents to set up an independent user trust to provide healthcare at home for their daughter. This ruling is available for download at: www.in-control.org.uk

22. Some things to remember.. “ A personal health budget helps people to get services they need to achieve their health outcomes by letting them take as much control over how the money is spent on their care as is appropriate for them” (PHB: first steps, DH, 2009). “Remember, like direct payments, independent living trusts are just a tool. They are not, at heart, about money. They are about making something happen by enabling people who need support to control money and decisions about it. (Holman and Bewley, 2001)

23. Another “third party” option.. Domiciliary/nursing care agency • Will be registered with the Care Quality Commission • Will be set up to employ staff • But…will need to understand and support the purpose of a personal health budget.

24. Another third party option… Community Interest Company (a type of social enterprise) • Community Interest Companies are “organisations that run along business lines, but where any profits are reinvested into the community or into service developments” • Families or groups of individuals may join together to create a community interest company for support and to share some of the tasks involved in managing their budget.

25. Another third party option User-led organisation/voluntary organisation • All local authorities are required to support the development of a user-led organisation in their area. • Voluntary organisations are a good source of advice, information and support. They have good networks, are community-based and are not-for-profit • One example: Western Cheshire PCT and Central & Eastern Cheshire PCT, have, in partnership with CCIL, the MS Society and other third sector partner agencies, have developed a small pilot focusing on the provision of Personal Health Budgets for people currently in receipt of Continuing Healthcare funding.

26. We need to think about roles and responsibilities

27. How would we recognise a good third party ? Three guiding principles: Self-determination - Decision-making should be as close to the individual as possible remembering that involving people is not the same as sharing power. Transparency – Not only should the individual know the resources available to them for planning, they should have easy access to detailed income and expenditure Choice and Control : Third party arrangements should promote citizenship. They should be flexible and they should focus on outcomes.

28. And…..all third party arrangements must support the purpose of a personal health budget which involves: Empowering the individual to make decisions that make sense to them Tilting the balance of power towards the individual Enabling a changed conversation, better decision making and improved health outcomes.

29. Questions, thoughts, ideas?