The Transforming Care Approach (PFA)

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

Stopping over medication of people with a learning disability, autism or both (STOMP)

STOMP stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines. It is a national project involving many different organisations which are helping to stop the over use of these medicines.  STOMP is about helping people to stay well and have a good quality of life.

Psychotropic medicines affect how the brain works and include medicines for psychosis, depression, anxiety, sleep problems and epilepsy. Sometimes they are also given to people because their behaviour is seen as challenging.

People with a learning disability, autism or both are more likely to be given these medicines than other people.

These medicines are right for some people. They can help people stay safe and well. Sometimes there are other ways of helping people so they need less medicine or none at all.

It is not safe to change the dose of these medicines or stop taking them without help from a doctor.

Public Health England says that every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.

Psychotropic medicines can cause problems if people take them for too long. Or take too high a dose. Or take them for the wrong reason. This can cause side effects like:

  • putting on weight
  • feeling tired or ‘drugged up’
  • serious problems with physical health.

Easyread STOMP

NHS England also commissioned the Challenging Behaviour Foundation to produce some new resources for families.

One of the resources is a new online medication pathway for family carers. The other is a printed version of this. The pathway covers topics such as:

  • What you need to find out before your relative starts taking medication
  • What the alternatives are to medication
  • How medication should be monitored
  • What to do if you have concerns about your relative’s medication.

The printed medication information pack can be ordered from the CBF.

STOMP pledge for health care providers

Healthcare providers are invited to email to support the STOMP healthcare pledge and for help with producing their own STOMP action plan and self assessment. Also see below for links to easy read information, new family carer resources from the Challenging Behaviour Foundation and the STOMP pledge for social care providers.

For further information click