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Making sense of personal budgets for M.E.

Making sense of personal budgets for M.E.

From InterAction 91, Christmas 2015

Cathy Stillman-Lowe explores personal budgets, personal health budgets and direct payments, including how people with M.E. might access them.

Local council personal budgets are a well-established part of social services provision in England.

However, personal health budgets are a relatively new concept in the NHS and are still restricted to particular patient groups. For example, people who are eligible for NHS Continuing Healthcare have a right to a personal health budget.

This article is intended to provide a broad overview of the different processes for people with M.E.

In a nutshell, what’s the difference?

  • A personal budget is for your council assessed social care and support needs.
  • A personal health budget is for your NHS healthcare and support needs.
  • A direct payment is one way of managing either of these budgets, where you get the cash to buy the agreed care and support you need.

There may be quite a lot of local variation in how the personal health budgeting process works.

In addition, while the information provided applies to England, arrangements in Wales, Scotland and Northern Ireland will be different. Please see below for details of where to find information in relation to the rest of the UK.

Aileen runs a group for people severely affected by M.E. in Northern Ireland. She says:

"The differences in the provision of health and social care are staggering and a real postcode lottery. It’s very unfair how greatly things vary depending on your postcode and what area of the UK you live in.”

Personal budgets for social care

A personal budget is the amount of money a local authority allocates for your care, based on its assessment of your needs. You can be put in charge of this budget either by telling the local authority how you would like it spent, or by the council giving you the money so that you can directly pay for your own care (a direct payment – see below).

It could also be given to a separate organisation (such as a user-controlled trust) that will spend the money on your care as you see fit, if you prefer. These are commonly known as Individual Service Funds.

Additionally, you can choose a combination of the above (for example, a direct payment with some council-arranged care and support), often called a mixed package.

With the recognition of personal budgets in the law, every individual is legally entitled to a personal budget that must be incorporated in every care and support plan (or support plan for carers) – unless the individual is just getting intermediate care or reablement support to meet their identified needs. Legally, you have a right to advocacy support if you require help to have your say about your care needs.

You can spend your personal budget in a variety of ways, for example:

  • To recruit a member of staff as a personal assistant (PA) or to buy care and support services from a care agency to help you to meet your eligible and assessed needs in your own home – for instance your personal care and social needs, pursuing indoor/outdoor activities or being part of the local community.
  • To pay for short stays in a care home or for respite care (applicable for carers who are given a break from their caring role).
  • To access a wide range of local community social and education activities and mainstream services.
  • To purchase particular aids and equipment (not provided by the NHS) that you require and are stated in your support plan as an outcome that needs to be met to promote your independence. You cannot use direct payments to buy equipment already provided by the NHS.

Michele has had a PA paid for by her local authority for more than two years now. She says:

“I find it so useful as I would be practically housebound and socially isolated without it. I found the application process quite painless and systems are in place to be able to manage direct payments, so between my PA and myself we manage to make it work well.”

NHS personal health budgets

A personal health budget is an amount of money to support your identified health and wellbeing needs, planned and agreed between you and your local NHS team. The aim is to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.

Personal health budgets work in a similar way to the personal budgets that some people with M.E. may already be using to manage and pay for their social care.

Together with your NHS team (such as a GP) you will develop a care plan. The plan sets out:

  • your personal health and wellbeing needs
  • the health outcomes you want to achieve
  • the amount of money in the budget
  • how you are going to spend it.

You can use a personal health budget to pay for a wide range of items and services, including therapies, personal care and equipment. This will allow you more choice and control over the health services and care you receive. The personal health budget cannot be used for emergency care or primary care services eg. dental treatment.

Personal health budgets are still a relatively new method of supporting disabled people to have greater choice and control over their lives.

You need to be aware that each area will be at different stages of implementing personal health budgets.

Local council direct payments

Direct payments give you the most control over your care, and mean that if you are unhappy with the services you’re getting, you can decide to change who gives you the care services without the process of going through the local authority.

However, with this freedom comes the responsibility of accounting for how the budget is spent, to ensure it is meeting your needs. There are also additional responsibilities if you decide to become an employer and hire a personal assistant with your direct payment.

Vicki has a mixture of direct payments and home care provided by the council. She says: 

“This allows me to maintain some stability with essential care, whilst also offering me the flexibility which direct payments can provide, if managed and provided properly.”

Direct payments for healthcare

If you choose this option, you get the cash to buy the care and support you and your NHS team decide you need. You have to show what you have spent it on, but you, or your representative, can buy and manage services yourself.

People with a personal health budget will benefit from health and social care working well together and, for some, a joint budget will also be beneficial.

Useful contacts

Personal budgets

The charity Disability Rights UK offers a personal budgets helpline and email service. You can also download a free factsheet, ‘Personal Budgets: The right social care support’.
Tel: 0300 555 1525
Email: personalbudgets@disabilityrightsuk.org

Personal health budgets

Find out more via your GP or on the NHS Choices website.

Peoplehub, an organisation providing peer support for people interested in personal health budgets, also has some useful resources.

UK social care arrangements

Wales: www.gov.wales/topics/health/socialcare

Scotland: www.gov.scot/Topics/Health/Support-Social-Care/Support/Self-Directed-Support

Northern Ireland: www.dhsspsni.gov.uk/articles/community-care