Guide for CCGs on Personal Health Budgets for people with learning disabilities

personal health budgets


Personal Health budgets were introduced to enable people with long term conditions and disabilities to have greater choice, flexibility and control over the health care and support they receive.

This month (April 2014), people who are eligible for NHS Continuing Healthcare (NHS CHC) will have the right to ask for a personal health budget. This right to ask will be extended to the ‘right to have’ such a budget from October 2014 (subject to clinical or financial grounds that might make such a budget unviable).

The use of personal health budgets offers an opportunity for the NHS to address health inequalities which have been highlighted on many occasions and also to improve health outcomes for people with complex health needs.

The authors of this report looked at personal health budgets for people with learning disabilities described as having complex health needs or behaviour viewed as challenging (including people with autism).

It is hoped of course that the use of such budgets and the control they might offer could lead to innovative support packages, in particular for example for young people moving into adulthood who traditionally may have been offered support in services not unlike Winterbourne View.


What they did was to work with three sites and a network of individuals and organisations supporting the roll-out of personal health budgets to people with learning disabilities.

The purpose was to identify challenges but also to point to successes and report on good practices. The authors present a number of case studies and examples in the report


What they found was a number of things were going well in some of the localities. One area worked with a local people first advocacy organisation which had service auditors checking the quality of local services. There were specific challenges, for example access to better information on outcomes that could be shared with people with learning disabilities and their families as well as commissioners and Health and Wellbeing Boards.

When considering the identification and measurement of outcomes, they found the Health Equalities Framework  enabled everyone involved to discuss risks to health inequalities, identify priorities for action and monitor evidence of progress.

They identified a number of markers of progress that they felt needed specific consideration, which were:

  • Strong local leadership – people really want to change culture
  • Working together with people and families
  • Working with important people to get the message across
  • Providing clear information about personal health budgets
  • Helping people to stay independent, and thinking about people’s whole lives – not just their illness, impairment or treatment -personal health budgets are not just about the money.
  • Treating people as equal partners and taking a positive approach to risk
  • Providing advice and support to help people plan
  • Ensuring people can take their personal health budget in different
  • ways, depending on what suits them
  • Checking with the person and family to see how well things are going

The report is then structured around these markers to offer guidance to Clinical Commissioning Groups and their partners around the inclusion of people with learning disabilities and their families in the roll-out of personal health budgets.

Conclusion and comment

The authors conclude that their findings suggest that implementing personal health budgets for people with learning disabilities can improve the quality of support and the quality of life of individuals and their families.

They suggest that people with the most complex needs, including people who challenge services and are therefore at risk of ending up in in-patient services, may benefit the most.

There is some information on costs and the potential for cost savings and the early indications suggest that there may well be cost savings for some. It is far too early to be clear about this, and of course it is within the logic of the individualised approach that there is likely to be a range of costs associated with a range of needs and responses.

The authors offer the ‘markers for success’ as a framework for localities to consider their own progress on implementing personal health budgets for people with learning disabilities and in addition to these, there are also a number of stories on the NHS England website which may offer ideas and support.


Personal Health Budgets: Including people with learning disabilities, Turner S & Giraud-Saunders A, Think Personal, Act Local

Stories about people with learning disabilities with personal health budgets

Health Equalities Framework

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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