PRIMARY CARE
Learning Disability and Autism
The NHS has a crucial role to play in helping people with a learning disability, autism or both lead longer, happier and healthier lives.
Our NHS Long Term Plan aims to improve people’s health by making sure they receive timely and appropriate health checks, while improving the level of awareness and understanding across the NHS of how best to support them as patients.
What's happening
Training and Opportunities
The Oliver McGowan Mandatory Training on Learning Disability and Autism
Enabling the health and care workforce in England to better support people with a learning disability and autistic people.
Learning Disability Awareness and Annual Health Checks (a whole practice approach)
For any staff member who is involved in and/or has an interest in supporting people with learning disabilities (PWLD) to have annual health checks.
- Training sessions will cover what a learning disability is/is not, and the characteristics seen within different levels of LD
- Overview of LD inclusion tool to identify patients, when and how to use
- Overview of LeDeR – purpose and statistics of preventable deaths in PWLD
- Importance of Annual Health Checks and common health issues in PWLD
- Mental Capacity in relation to healthcare for PWLD
- Barriers to accessing equitable healthcare for PWLD
- AHC and health action plans – what should be considered, how to develop an effective HAP
- Effective strategies to support successful AHC’s
- Service aims and objectives of the Health Facilitation Team to support GP practices
- Learning Disability Champion proposal
- Video’s from PWLD – explanation of their experiences of health checks
Learning Disability and Autism Awareness in Primary Care - Clarity Teamnet (eLearning)
THE DETAILS
Resources & Videos
Annual Health Checks
The NHS Long Term Plan 2019 states that action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and autistic people.
People with learning disabilities and those who are autistic have increased prevalence of multi-morbidity, complexity, polypharmacy and greater likelihood of adverse events from incompatible interventions. A personfocused approach is essential to help patients and their families navigate our increasingly complex health care system.
As part of this, the 2022/23 NHS operational planning guidance continues to focus on annual health checks being delivered for those on the practice’s learning disability register with all having to have health action plans in place.
- Guides Quality statement 4: Annual health check | Learning disability: care and support of people growing older In this NICE guidance on mental health and people with a learning disability, it explicitly recommends carrying out annual health checks.
- Health checks for adults with intellectual disability and association with survival rates: a linked electronic records matched cohort study in Wales, UK | BMJ Open – A study carried out by the BMJ which concludes that annual health checks are likely to influence survival if started before a person is diagnosed with a chronic condition, especially for people with autism or Down’s syndrome.
- A Step by Step guide to Health Checks for people with a learning disability and A Step by Step guide for GP practices – The Royal College of GPs, in partnership with the Clinical Innovation and Research Centre, developed and published step-by-step guides focussed on annual health checks for people with learning disabilities. The guides collate information and resources to help GPs, practice nurses and the primary administration team organise and perform quality AHCs on people with a learning disability.
- Increasing the uptake of Annual Health Checks
- Introduction to annual health checks for people with a learning disability
- Introduction to annual health checks for people with a learning disability for families and carers.
- West Midlands Applied Research Collaboration – Videos on key information about learning disability
Cervical screening
Cervical screening can detect early changes to avoid cervical cancer developing but the number of women attending for screening is falling year on year. However, fewer than 1 in 3 eligible females with a learning disability attend their cervical screening.
‘The smear test film’ is available on YouTube or order a copy of the DVD for £3 – produced by Public Health England in association with Jo’s Cervical Cancer Trust Easy read booklet: Having a smear test. What is it about? Public Health England has also produced an easy guide to cervical screening.
Breast screening
Breast screening reduces the number of deaths from breast cancer by finding signs of disease at an early stage. National uptake of breast screening is around 70%, however evidence has shown that uptake is lower in women with a learning disability compared to the rest of the population.
Further Links
Understanding You, Discovering You. An online peer support course for autistic young people aged 16-25
This guidance supports healthcare professionals deliver good quality care for people with a learning disability and autistic people. View it here
- Autism and Neurodiversity Toolkit for government departments, produced by Department for Work and Pensions, in partnership with the Autism Alliance UK and the Autism Task Group
- It is for staff from all government departments and helps them better understand how they can support autistic people and associated Neuro-Diverse conditions
- They have also developed a Disability Passport, ‘About Me’, that aims to support disabled claimants to safely disclose their disability or health condition to their Jobcentre Plus Work-Coach / Adviser with the aim of improving communication and ensuring appropriate, reasonable adjustments are identified and put in place at the earliest opportunity
- David Gill’s story can be found on the Patient Voices website.
In order to receive the best care and health outcomes available to them, people with a learning disability should be on the GP Learning Disability Register.
Improving identification of people with a learning disability: guidance for general practice
HEE provide guidance to services to ensure health and care professionals have the training they need to support those with learning disabilities. Find out more here.
Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic.
This needs to change. LeDeR reviews deaths to see where we can find areas of learning, opportunities to improve, and examples of excellent practice. This information is then used to improve services for people living with a learning disability and autistic people.
For more information about LeDeR, visit the national Learning from Lives and Deaths website.
Resources
The National Autistic Society website lots of information about autism.
- ‘Ask Autism’, a series of online modules developed by autistic people
- My Hospital Passport, a resource for autistic people who might need hospital treatment
- Autism guide
- Autism and the NHS Long Term Plan
- Guide to help staff support people with access needs, including a guide for GP practice staff to support autistic people
- Learning disability and autism
- Annual Health Checks
See what the NHS Long Term Plan says about learning disabilities and autism.
