Patients and Information Open House: Paper on personal health budgets Tuesday 17 June 2014, Leicester About this paper: There was a short discussion on personal health budgets following the “Patients in Control” presentation. Many of the issues raised went much wider than the personal health budgets and reflected things that personal health budgets highlighted or brought to light rather than caused. For example levels of funding to clinical commissioning groups (CCGs) / Foundation Trusts. There were some questions, both asked orally and written that related to the principles and practicalities of personal health budgets which we did not get time to address. This paper sets out some of the background thinking behind personal health budgets and how they work; hopefully it will address the issues raised. It is not intended to be a complete guide to personal health budgets - a range of information, practical advice and personal stories can be found on the personal health budget website1 including an introduction to personal health budgets2 and an easy read introduction.3 What are personal health budgets and who can have one?

A personal health budget is an amount of money to support identified healthcare and wellbeing needs, planned and agreed between the person, or their representative, and their local NHS team. At the centre of a personal health budget is a care and support plan. This plan helps people decide their health and wellbeing goals, together with the local NHS team who support them, and set out how the budget will be spent to enable them to reach these goals and keep healthy and safe.

Personal health budgets are only suitable for certain parts of NHS funded care and support. The presentation lists areas where personal health budgets would not be appropriate such as unplanned emergency care or operations.

1 www.personalhealthbudgets.england.nhs.uk

2 http://www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/MakingPHBHappen/Gettingmessageacross/Understanding_personal_health_budgets.pdf 3 http://www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/MakingPHBHappen/Gettingmessageacross/Easy_Read_Personal_health_budgets_2013.pdf

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They are more suitable for people who have complex health needs or disabilities. Currently adults who receive NHS Continuing Healthcare4 and children receiving continuing care5 have a right to ask for a personal health budget. In the longer term others with long term conditions who could benefit will be able to access them.

If you think you would benefit from a personal health budget, talk to your local NHS team who help you most often with your care - this might be a care manager - or your GP. Even if a personal health budget is not right for you, you can talk to them about other ways to make sure that you get the healthcare and support that works best for you.

Why are we introducing personal health budgets?

The aim of a personal health budget is to give people living with chronic health needs more choice and control over the money spent on meeting their health care and wellbeing needs. This helps people manage their heath better and reduces their reliance on acute unplanned services (e.g. hospital admissions) as well as improve their quality of life and satisfaction with the services they receive.

What is the evidence that they are beneficial?

Personal health budgets were piloted in the NHS between 2009 and 2012. The independent evaluation6 showed that they improve people’s quality of life, well-being and feeling of being in control. While they do not generally have any statistically significant effect on health status, they reduce unplanned use of NHS services - particularly by reducing hospital admissions.

How do they work – what is the process? A personal health budget involves the following stages:

1. Making contact and getting clear information. 2. Understanding the person's health and wellbeing needs. 3. Working out the amount of money available. 4. Making a care plan and agreeing the plan. 5. Organising care and support. 6. Monitoring and review.

Where does the money come from? Are we paying for expensive extras that we cannot afford?

Personal health budgets are not about new money but rather about using money that would have been spent on someone anyway, but using it differently. Evidence from the pilot programme is clear that personal health

4 https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-

nhs-funded-nursing-care 5 http://www.cen.scot.nhs.uk/files/11b-national-framework-for-continuing-care-england.pdf 6 Details of the evaluation, interim and final reports can be found at https://www.phbe.org.uk/

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budgets help people manage their health better and reduce the level of unplanned care (e.g. A&E and hospital visits).

Local CCGs decide how to allocate their resources and identifying funding for personal budgets will be part of this process.

How are we joining up across health and social care, and what have we learnt from personal budgets in social care?

Personal budgets and direct payments have been around in social care since the mid-1990s. The principles of both are the same and people introducing personal health budgets in the NHS have learnt a lot from their social care colleagues. We appreciate that not all local authorities have got it right yet and we need to learn from those that have.

In the future people should be able to have a single budget that covers both their health and social care needs.

One of the key differences about personal health budgets in health and social care is means testing. Personal health budgets have the NHS Constitution at their heart, and comprehensive care should be free at the point of delivery. However social care is means tested and people may be expected to contribute to their care.

DfE’s Special Educational Needs and Disability (SEND)7 Pathfinders are testing personal budgets across health, social care and education, and this will include direct payments.

Where else could personal health budgets work? Do they work for people with mental health issues, dementia or learning disabilities?

The pilot programme showed that personal health budgets are beneficial for people with mental health problems. Seven areas across England are helping us to explore how best to introduce them in mental health services.

"Personal Health Budgets: including people with learning disabilities"8 shows that when people and their families get the chance to write their own individual plan and have control over the money available for their support, it can help provide innovative support for individuals who may otherwise end up in high cost, poor quality residential services.

People who “lack capacity” to make decisions, including people with dementia, can still benefit from a personal health budget – someone else can

7 https://www.gov.uk/childrens-services/special-educational-needs 8 http://www.thinklocalactpersonal.org.uk/_library/Reports/TLAPIncludingLD.pdf

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manage the budget on their behalf. Hear how personal health budgets have helped people with dementia9

How are people with personal health budgets supported to plan their care?

Good quality advice, advocacy and brokerage is vital to successful personal health budgets, there is a lot of information and best practice guidance available.10

How can we raise awareness about personal health budgets? Can we set out more clearly who might be able to get one?

Personal health budgets are relatively new in the NHS and are gradually being introduced across the country. Those people who receiving NHS Continuing Healthcare are the first to have the right to ask for one. We are currently working to explore how to roll them out beyond this group of people and we will issue guidance on this in due course.

Raising awareness of personal health budgets is important and currently this is done at a local level. At a national level we are working with 28 voluntary and community sector organisations who are taking part in a programme to help them 'gear up' for personal health budgets.

How are personal health budgets monitored and reviewed?

As with all NHS care personal health budgets should be reviewed regularly to ensure the care and support is meeting the individual’s needs and that their needs have not changed. In addition to this the review looks at the budget, is it enough, too much or just the right amount and are the people spending it as agreed in their care and support plan. How often these reviews takes place varies depending on the individual’s circumstances and what has been included in the plan.

I hope this is helpful; if you have further questions, you may find the answer on the personal health budget website. You may also find the people hub11 interesting; they are the personal health budget holders peer network. Dr Alison Austin Personalisation Lead NHS England Email Alison.austin4@nhs.net Twitter @A_Austin4

9 http://www.personalhealthbudgets.england.nhs.uk/Topics/Toolkit/HowPHBswork/Stories/ 10 http://www.personalhealthbudgets.england.nhs.uk/Topics/Toolkit/HowPHBswork/Info/ 11 www.peoplehub.org.uk