Learning Disability and Autism: Information for primary care staff

This webpage is designed to support Primary care staff working with autistic people and/or people with a learning disability.

Learning disability

This section contains helpful information for people working in primary care and supporting patients with a learning disability.

What is a learning disability?

A learning disability affects the way a person learns new things throughout their life. We think around 1.5-2 million people in the UK have a learning disability. 
People with a learning disability can have difficulty:
  • understanding new and complex information
  • learning new skills    
  • doing things (like everyday activities) independently  

A learning  disability  is different from a learning  difficulty . A learning difficulty like dyslexia or dyspraxia does not affect general intellect. It is possible for a person to have both a learning disability and a learning difficulty.

A diagnosis of a learning disability is usually given by an Educational or Clinical Psychologist. In City and Hackney, many people who have a learning disability will NOT have an official learning disability diagnosis even though they would meet the diagnostic criteria.

Annual health checks

People with a learning disability and autism are more likely to die of avoidable causes and face health inequalities than other people. They are more likely to have poorer physical and mental health. This does not need to be the case.

A healthcare professional measures a patient's blood pressure during a consultation.

Annual health checks are for people with a learning disability who are over 14 years old. They are carried out by a doctor or nurse once a year. An annual health check can help a person stay well by talking to a doctor or nurse about their health and finding any problems early, so they can be sorted out.

 

What happens at an annual health check?

 

 

 

 

At the annual health check the Doctor or nurse will: 

Check :

  • the persons physical health which might include checking their weight, blood pressure, their tummy and taking blood or wee samples
  • any medication they take ask

Ask about: 

  • things that people with a learning disability can have problems with like doing a poo regularly
  • other health issues the person might have (like epilepsy or asthma)
  • how they are feeling
  • any other health appointments they might have
  • any support they might be getting

Talk: 

  • about how to stay healthy and offer advice on how to stay well

 

Resources for annual health checks :

The GP learning disability register

The enhanced service (ES) is designed to encourage GP practices to:

  • identify all patients aged 14 and over with a learning disability 
  • maintain a learning disabilities register
  • offer people with a learning disability an annual health check (which will include producing a health action plan
NHS Learning Disability Register poster with photos and names of Carolyn Jones, Tony Wright, and Alpa Madan
The GP learning disability register is a list of people with a learning disability that the doctor’s surgery looks after. Most doctor’s surgeries have a learning disability register. It helps the doctor’s surgery know who may need extra support. It means the doctor can invite people with a learning disability for their yearly annual health checks and any important health screenings and vaccinations.

 

 

Updating your learning disability register

Getting the right people on the register

Many people in City and Hackney (and in the UK) with a learning disability  will not  have an official learning disability diagnosis and would have never had a cognitive assessment. This means that many people who have a learning disability may not  be on their GP learning disability register. If fact, we guess that only around 26% of people with a learning disability in England are on the learning disability register. 

Most people with a learning disability in City and Hackney  are not  supported by the local learning disability service. This makes it hard to know when someone might need extra support with their health and wellbeing. This is why it is important that we get the right people on to the learning disability register. 
Deciding if someone should be on the Learning disability register does not involve a formal diagnosis of a learning disability. It is more important to think about how much support someone might need, their skills and independence with everyday tasks (such as self-care or managing money) and what they are like when they and about in the community (travelling). Someone with a learning disability can be added to the GP LD register at any age.
This Learning Disability inclusion Tool   might help you to gather the right information and reach a decision about whether someone needs to be on the GP learning disability register.

Updating your learning disability register

We know that people with a learning disablity experience health inequalities. This means that having an up-to-date and accurate Learning Disability Register is important! You may need to check and update your register regularly.
The SNOMED code for ‘On the Learning Disability Register’ is:
  • SNOMED: 416075005

CEG searches LD01 and LD02 – what’s the difference? 

Both CEG LD searches identify patients that may have an uncoded Learning Disability by looking at specific codes associated with a learning disability diagnosis. The code list was defined by NHSE&I who have indicated which codes are more likely to be associated with a learning disability diagnosis than others (i.e. high prevalence). For that reason, search LD01 looks for the high prevalence codes and search LD02 looks for the lower prevalence codes. 
  • LD01 - May have LD but not on the register, aged 14+ (high prevalence codes) 
  • LD02 — may have LD but not on the register, aged 14+ (lower prevalence codes)
NHSE&I guidance document: I mproving identification of people with a learning disability: guidance for general practice NHS England and Improvement

Cancer screening

People with a learning disability die at a much younger age from cancer than people without a learning disability.

Many people with a learning disability find it difficult to take part in cancer screening and need reasonable adjustments to make cancer screening easier. These include things like providing information in easy read, giving the person extra time during the appointment, letting the person get to know the clinician or helping them to know what to expect.

In City and Hackney, we want to make sure more people with a learning disability go to their cancer screenings, this is so we can help stop early deaths.

Cancer screening rates for people with a learning disability in City and Hackney (as of Sept, 2025)

  • Bowel cancer: 28% (compared to 43.6% total population)
  • Breast cancer: 28% (compared to 39.9% total population)
  • Cervical cancer: 62% (compared to 77.4% total population)

  Resources for cancer screenings 

Autism

This section contains helpful information for people working in primary care and supporting autistic patients.

What is autism?

Autism is a lifelong difference in how people think, perceive the world and interact with others. It is usually thought to be neurological.
An autistic person may see, hear, feel and experience the world differently from non-autistic people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured’. Often people feel being autistic is a fundamental and positive aspect of their identity.

Autistic people have differences in three areas of development:

    1. Social understanding and communication
    2. Flexibility, information processing, and understanding (i.e. "thinking style")
    3. Sensory processing and integration

We need to look at these differences in terms of both the strengths and challenges that might arise to know how best to adapt our service to meet the needs of autistic people.

This short film was created by the University of Bristol project ‘Sensing Spaces of Healthcare’, ELFT, and Inner Eye Productions. It was coproduced with autistic people and is about autistic people’s experiences of hospitals and health care settings.

Autistic friendly GPs in City and Hackney

Autistic people are unique and individual, just like non-autistic people. However, our experts with lived experience tell us that there are some common themes that, if we can “get right” it could make places more accessible and welcoming to autistic people.

With this in mind, we coproduced the City and Hackney autistic friendly checklist for primary care settings. The checklist is designed to guide GP practice on what they need to do to be more autistic friendly.

In 2023/24 all GP practices in City and Hackney were asked to complete the checklist (as part of the CCE contracts) and identify changes that could be made to make their practice more accessible to autistic patients. This included things like adding a flag to autistic patient’s records, asking about peoples communication preferences or providing extra information on what to expect at an appointment.

In 2024/2025, all GP practice in City and Hackney were asked to complete an online training pack and a final evaluation to see what improvements they had made to be more autistic friendly .

 

Resources for Autistic friendly GP practices

Useful resources

Further learning materials

Learning disabilities

Autism

Two women standing by a blank flip chart during a training sessionOCTOBER FACE TO FACE TRAINING: Autism and reasonable adjustments training

There are still a few spaces left on our autism and reasonable adjustments training!  Come and hear from a person with lived experience about what is helpful for them when using GP services. This free training session is for anyone working in Primary care services across City and Hackney.

Date: Thursday 23rd October 2025, Time:  3pm - 4:30pm  Location: Homerton Hospital (face to face). To book on use this link

LEDER Learning from lives & deaths

A spiral-bound booklet with the word 'Review' at the top and an image of a person’s face on a gravestone

What is the LeDeR programme?

The LeDeR programme (Learning from lives and deaths of People with a learning disability and autistic people) reviews all deaths of people with a learning disability aged 4 years and over and adults aged over 18 years known to have had a formal diagnosis of autism (without a learning disability).

Why was LeDeR set up?

People with a learning disability and autism are more likely to die of avoidable causes and face health inequalities compared to those without a learning disability and autism.

They are more likely to experience a number of both physical and mental health conditions. The LeDeR programme was set up to drive improvement in the quality of health and social care service delivery for people with a learning disability and autism, leading to improved health outcomes and reduced health inequalities.

Reviews are completed by qualified health and/or social care professionals. The reviewing process involves examination of records and engaging with family members/ carers and putting together the individuals’ pathway of care and support leading up to the persons’ death. Findings from these completed reviews are shared with relevant service providers for necessary improvements to be made in our services.

You can find the annual reports for NEL here Learning from lives and deaths – People with a learning disability and autistic people (LeDeR programme) - NHS North East London

Reporting a death: 

Anyone can report a death of a person who was known to have had a learning disability or autism or both to the LeDeR programme. You can do this via this link:  https://leder.nhs.uk

STAMP/STOMP

In 2015 NHS England started a campaign called Stopping Over Medication of People with a learning disability and autistic people (STOMP). It aims to challenge when medication use is thought to be inappropriate-when use of medication is incorrect. The campaign aims to help people with a learning disability, autism or both be cared for in the right way.
If you have questions about STAMP/STOMP in City and Hackney, Shiva is the Learning disability community liaison pharmacist (City and Hackney).
Shiva Fouladi-Nashta,  shiva.fouladi-nashta@nhs.net     mobile: 07876037209
 

Resources for STAMP/STOMP