Learning Disability and Autism: Information for primary care staff

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 or complicated 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.

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, any important health screenings and vaccinations.

Many people in City and Hackney (and across 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, it is estimated 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 which 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).

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.

 

Someone with a learning disability can be added to the GP LD register at any age.

Having an up-to-date and accurate Learning Disability Register is important which means that the register needs to be checked regularly.

The SNOMED code for ‘On the Learning Disability Register’ is:

• SNOMED: 416075005

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

Both CEG 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. They have indicated that certain codes are more likely to be associated with a learning disability diagnosis than others (high prevalence). For that reason, search LD01 looks for the high prevalence codes and search LD02 looks for the lower prevalence codes. To make this clear, the searches have been renamed to:

·         LD01 - May have LD but not on register, aged 14+ (high prevalence codes)

·         LD02 - May have LD but not on register, aged 14+ (lower prevalence codes)

Improving identification of people with a learning disability: guidance for general practice NHS England and Improvement

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. Annual Health Checks are a chance for a doctor or nurse, the person with a learning disability and those who support them to review a person’s physical and mental health, and wellbeing.

 

 

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

·         ask about things that people with a learning disability can have problems with like doing a poo regularly

·         ask about other health issues the person might have (like epilepsy or asthma)

·         ask about how they are feeling

·         check any medication they take ask

·         about any other health appointments they might have

·         ask about 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 :

 

•         Annual Health Check (Easy Read) MENCAP
•         Annual health checks for people with a learning disability information for parents and carers
•       RCGP Step-by-step guide to Health Checks for people with a learning disability
•           NHS England/NDTI Learning disability annual health check toolkit

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.

 

   Resources for cancer screenings

 

·         EASY READ Bowel cancer screening test

·         EASY READ How to use the NHS Bowel cancer screening kit

·         EASY READ Bowel scope test

·         Tips for collecting your poo leaflet

·         EASY READ Breast screening an easy guide

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

 

·         Free MindEd e-learning module on STOMP for clinicians (developed by NHS ENGLAND STOMP team).

·         STOMP/STAMP NHS England

·         A NHSFutures STOMP STAMP page is available for clinicians to network here  

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

 

·         City and Hackney Autistic friendly standards

·         City and Hackney Autistic friendly checklists for primary care and healthcare settings pdf version

·         City and Hackney Autistic friendly checklists for primary care and healthcare settings digital version

·         Autistic friendly checklists: primary care examples pack

·         Autistic friendly neighbourhoods project: listening to autistic voices

·         Autistic friendly neighbourhoods project: making London Fields PCN autistic friendly closing report

Autistic people and people with a learning disability can find it difficult to access health services like going to their GP or for a dentist’s appointment. They tend to have worse health and die younger than people without a Learning disability or Autism.

It is important that health services promote good health for all people by making sure services are accessible to everyone.

Jody Barrientos is the Health Inclusion lead for Primary Care and Community (for people aged 14+, with a Learning Disability and / or Autism) and she works across the City and Hackney.

Jody can help with:

• supporting health services to promote their services to people who are autistic and/or have a Learning disability
• supporting health services to make appropriate reasonable adjustments
• sharing learning and best practice to primary care and community colleagues, when working with residents who have a learning disability and/or are Autistic
• supporting residents to be more involved in the way their local health services are delivered.
• supporting the uptake and completion of annual health checks as well as other important health screening, for City and Hackney residents
• supporting residents to be more involved in the way their local health services deliver their healthcare.

 

You can call or text Jody on 07917856551 or email at jody.barrientos@nhs.net