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 fulfilling 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 can be found on the learning disabilities page on the NHS England website.
The Council for Disabled Children have produced a transforming care information sheet to help children and young people understand the NHS England Transforming Care programme.
Education, Health and Care Plans
Health, education and social care systems are working hard to share pathways and processes that work together and are easier to understand. An Education, Health and Care Plan (EHCP) will help families work with professionals based on an assessment of individual need.
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.
Tools to help plan and understand the process:
Annual Health Checks
All people with a learning disability aged 14 and above are entitled to an annual health check. This is usually with the GP or practice nurse.
The annual health check is important because it can help identify any health problems before they get worse, and help adults and young people to receive the care that they need. The Health Check also includes a health plan which will give information on how to say healthy and make recommendations for other referrals if they are needed.
The annual health check is recommended in the SEND Code of Practice guide for health professionals.
NHS England are working to make sure that more people are receiving a health check. If you think you or someone you know should have an annual health check, you can contact your GP surgery to arrange one.
More information on annual health checks is available from Mencap
STOMP
(Stop Over Medicating People with a Learning Disability and or Autism)
NHS England is leading a campaign to help people understand more about medication for people with learning disabilities. A report in July 2015 found that many people with a learning disability and or Autism are being given strong medication when they don’t really need it.
These medicines are called ‘psychotropics’. Some people are prescribed this medication to try to manage behaviours that challenge. The medication can be very useful for treating mental illness such as psychosis or depression. However there is no evidence that the medicines help stop ‘challenging behaviour’.
It is important that you don’t stop taking medicines without speaking to your doctor first.
If you are worried about medicines for yourself or someone that you know, you should talk to the person who prescribed them to you and ask for a medication review. This could be your GP, Specialist Doctor, pharmacist or nurse prescriber.
More information about STOMP
What is the Children's Dynamic Support Register
The Dynamic Support Register (DSR) has information about the child/young person and what areas of their care may require enhanced support. The DSR is a register for children and young people with a Learning Disability and/or Autism.
The information on the register helps services to work collaboratively in order to better manage a person’s support and ensure the best possible and most appropriate outcome outcomes in the community in relation to their individual needs. The information held on the DSR will depend on the person and the care and support needed.
Once identified and added to the DSR, each individuals care will be routinely reviewed in collaboration with the identified support network to make sure that all the best practice for children and young people with a Learning Disability and/or Autism is in place. In order to ensure we are providing the most appropriate care to meet the needs of children and young people, this register is reviewed weekly. With these regular reviews and a joined up approach we believe this will aid the early identification of increased risk and help us to proactively offer appropriate community support.
To support the DSR, at Cheshire and Merseyside Integrated Care Board (ICB), we have a dedicated team of Dynamic Support Keyworkers with specialist knowledge and skills in working with people who have a Learning Disability and/or Autism. By working in partnership with other agencies to offer a joined up approach to supporting families, Dynamic Support helps services to work more closely together to manage a person’s support needs effectively and ensure positive outcomes in the community.
Initially, Keyworker support will be provided to children and young people with a Learning Disability and/or Autism, who are already inpatients or are at risk of being admitted to a Mental Health setting.
Should a child or young person with Autism and/or a Learning Disability be at risk of admission to a Mental Health setting, Keyworkers will work closely with the family and alongside other agencies involved to try and prevent this happening or will remain involved to try to make any hospital stay as short as possible and endeavour to facilitate a smooth as possible discharge whilst ensuring the right support is available in the community.
LeDeR- Learning from Lives and Deaths, people with a learning disability and autistic people
What is the LeDeR programme?
Learning from lives and deaths – people with a learning disability and autistic people (LeDeR). LeDeR is a service improvement programme for people with a learning disability and autistic people.
Established in 2017 and funded by NHS England and NHS Improvement, LeDeR works to:
- improve care for people with a learning disability and autistic people
- reduce health inequalities for people with a learning disability and autistic people
- prevent people with a learning disability and autistic people from early deaths
LeDeR Reviews:
An LeDeR review looks at the key episodes of health and social care that the person received, which may have been relevant to their overall health outcomes. We look for areas that need improvement and areas of good practice. This helps reduce inequalities in care for people with a learning disability and autistic people. It reduces the number of people dying sooner than they should.
Anybody can make a referral to LeDeR if they believe that a person that has died, had a learning disability (and was aged 18+) or had a diagnosis of autism (and was aged 18+).
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Page last reviewed: 05 November 2024
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