In one of the biggest health scandals of our day, people with a learning disability and autistic people are likely to face premature mortality due to poor healthcare.

Our recent healthcare conference examined how we can positively influence change and identified the need for a balance shift, with power being placed in the hands of those with lived and familial experiences to shape a fairer future that enables lives to flourish.

What is our campaign?

A NICE Life calls on the National Institute of Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN) to include additional information in all relevant clinical guidance to highlight and address health inequalities faced by people with a learning disability and autistic people.

The aim is to create and deliver practical guidance to healthcare professionals focused on key elements such as:

• Understanding barriers to healthcare for people with learning disabilities and autistic people
• Consistently engaging with people with lived experience, their families and carers
• Addressing diagnostic overshadowing
• Understanding the law around the Mental Capacity Act, Equality Act and Human Rights Act.

Why is it important?

People with a learning disability and autistic people are more likely to experience complex physical health problems and have worse health compared to the general population.

They are also more likely to experience poorer quality healthcare and face premature deaths.

According to the 2022 Learning from Lives and Deaths (LeDeR) report, 42% of deaths of people with a learning disability in England were avoidable. Research from the University of Cambridge also shows autistic individuals are more likely to have chronic mental and physical health conditions, reporting lower quality healthcare than others.

Avoidable deaths are defined as causes of death that can be mainly prevented through effective public health and primary prevention interventions or through timely and effective healthcare interventions, including secondary prevention and treatment.

Why NICE and SIGN?

NICE and SIGN are independent, non-departmental public bodies that provide evidence-based clinical guidelines to help healthcare professionals deliver the best possible care.

The guidelines are developed by an appointed independent advisory committee comprising health and social care professionals, patient organisations and individuals.

Healthcare professionals trust them because they use relevant, reliable, and robust evidence. They also provide research recommendations for addressing evidence gaps and ways to reduce health inequalities.

Registered stakeholders comprising organisations interested in or representing people directly affected by the guideline topic are also allowed to influence recommendations at a consultation stage.

We want them to take this a step further!

How could the guidance be improved?

• Sections on learning disability and autism are highlighted in some clinical guidance, but not all, and currently not in enough detail.
• People with a learning disability and autistic people are too often left out of conversations about their healthcare. NICE and SIGN do not have a learning disability and autism advisory board to inform their guidance.
• In our current healthcare system, the age at which a child enters adult services varies depending on the service/speciality, creating ‘black holes’ in care. A named professional in the NICE guidance could help ensure diseases are managed in association with other comorbidities.

In a recent impact report reviewing how its guidance has been used to improve the health and care of people with a learning disability, NICE identified that there has been a lack of progress made in many areas. There were also high levels of health inequality for people with a learning disability and limited positive change over time.

What can you do?

Over the next few months, Learning Disability Today will explore potential solutions and share stories from people already taking action to improve health outcomes.

We will also be asking people/organisations to answer three key questions:

1. What changes to NICE/SIGN guidance would you like to see that will help end the premature mortality of people with learning disabilities and autistic people?
2. What could the sector itself do better to improve health inequality?
3. Do you have any other ideas or innovative solutions to help prevent preventable deaths?

We will share all answers in our ideas forum. Then, based on the answers, we will write an open letter to both NICE and SIGN specifying how we think it should update its guidance for healthcare professionals.

You can add your name to this open letter here.

How do we improve health outcomes and end premature mortality?

To start the debate, we have identified three key areas where NICE and SIGN could drive real change:

1. Add a section to all NICE/SIGN clinical guidance addressing the complex interaction between physical health conditions, learning disabilities, and autism.
2. To include people with lived experience of learning disability and/or autism on clinical advisory boards.
3. To include a section on the transitional period when people move from children’s healthcare to adult healthcare and nominate one professional who will lead in providing holistic, coordinated care and treatment.

Take the Pledge

Add your name to our open letter and/or share your ideas to show your ongoing commitment to helping end the premature mortality of people with a learning disability and autistic people.

Sign up today