The Transforming Care Approach

Transforming care is a national programme led by NHS England which is all about improving health and care services so that more people with learning disabilities and/or autism can live in the community, with the right support, close to home and have the same opportunities as anyone else.

The programme of work will ensure that families are:

  • getting the support they need to live long and healthy lives
  • being treated with the same dignity and respect
  • having a home within their community
  • being able to develop and maintain relationships and
  • getting the support they need to have a healthy, safe and fulfulling life.

New ways of working are being established to help families get the right help at the right time. One example of this is a greater focus on the Care-Co-ordination role to help families access and understand the offers of support available to them across health and social care systems. More details about the programme are set out here;

Education, Health and Care Plans

Health, education and social care systems are working hard to work together to share pathways and processes that work together and are easier to understand.  An Education and Health Care Plan (EHCP) will help families work with professionals based on an assessment of individual need.  

For more details click here

Care Education and Treatment Reviews

Where children or young people are at risk of a hospital admission a Care Education and Treatment Review (CETR) may be called by the family or professional.  When a CETR is called this means that the family and professionals all get together to review the needs and requirements of the young person and decide on the best next steps by working together.  A clinical expert and a family member who has had similar experiences from another area will be present to help planning with fresh eyes. Here is a tool to help planning and understanding of the process;

Easyread My Care and Treatment Review

The full toolkit on CETRs is available on the NHS England website here;

Children and Young People CTR Toolkit

Supporting Treatment and Appropriate Medication in Paediatrics (STAMP)

We started our work on overmedication with royal colleges. That work focused on the overmedication of adults with a learning disability.  We have now done a new piece of work which looks at how we can support children and young people with a learning disability, autism or both better.

Through STAMP we want to:

  1. make the lives of children and young people with a learning disability, autism or both who are prescribed psychotropic medications better.
  2. make sure that children and young people who need medication can get it for the right reason, in the right amount for as short a time as possible.
  3. help people to understand more about these medications and have the confidence to ask why they are needed.
  4. make more non-medication treatments and support available.
  5. make sure the person with their family and paid carers are involved in any decisions to start, stop, reduce or continue taking them.
  6. get more children and young people with a learning disability, autism or both to have an annual health check starting from the age of 14.

Who is involved in STOMP-STAMP?

STOMP-STAMP was launched in December 2018 by NHS England and The Royal College of Paediatrics and Child Health.

These organisations made a pledge at the launch event:

  • The Royal College of Paediatrics and Child Health (RCPCH)
  • The British Association of Childhood Disability (BACD)
  • Council for disabled children (CDC)

The pledge was:

We pledge to ensure that children and young people with a learning disability, autism or both are able to access appropriate medication (in line with NICE guidance,) but are not prescribed inappropriate psychotropic medication. Regular and timely reviews should be undertaken so that the effectiveness of the medication is evident and balanced against potential side effects. This will mean that children and young people are only getting the right medication, at the right time, for the right reason.

We, the undersigned, pledge to work together with children and young people with a learning disability, autism or both and their parents, carers and families, to take measurable steps to ensure that children and young people only receive medication that effectively improves their lives.

We pledge to set out the actions that our individual organisations will take towards this shared aim and report regularly on the progress we have made, ensuring that we can be held to account.