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.

We are calling on NICE and SIGN to update their guidance to help healthcare professionals navigate the complex interaction between physical health conditions, learning disability and autism more effectively.

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 guidance that addresses the complex interaction between physical health conditions, learning disability and autism, which too often are misunderstood or neglected.

The aim is to create and deliver solid and effective guidance to healthcare professionals to help end the premature mortality of people with a learning disability and autistic people.

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.

As they use relevant, reliable and robust evidence, they are trusted by healthcare professionals. They also provide research recommendations for evidence gaps and ways to reduce health inequalities.

Registered stakeholders comprising organisations that have an interest in or represent people directly affected by the guideline topic are also allowed to influence recommendations at a consultation stage.

So, 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. Currently, 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 co-morbidities.

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. To add a section that addresses the complex interaction between physical health conditions, learning disability and autism to all NICE clinical guidance.
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 nominating one professional who will take the lead in providing holistic, coordinated care and treatment.

But we want to know what you think. 

Over the next few months, Learning Disability Today  will be exploring potential solutions and sharing stories from those already taking action to improve health outcomes.

Then together we can work with NICE and SIGN on how they can improve the treatment of people with a learning disability and autistic people to bring an end to premature mortality.

Take the Pledge

Take action and join our campaign! Sign up to our Pledge to show your ongoing commitment to making the helping prevent the preventable deaths.

Agenda partners so far:

Mencap

ARC

LD England