Learning Disability and Autism – resource hub
This page contains useful information and helpful resources to support people with a learning disability and autistic people, as well as their families, carers, and professionals working to transform care across the South East.
There are also a number of resources available on the national NHS England learning disability and autism pages, and further information for NHS professionals can be found on the South East Learning Disability and Autism Future NHS platform.
On this page:
Learning Disabilities Mortality Review
GP Learning Disability Register
South East All-age Autism Strategy
COVID 19 vaccination
The government has accepted final JCVI advice which states that people with a learning disability should be offered a COVID-19 booster vaccine. This update confirms that you are eligible for an autumn booster if you are aged 5 years or above and are on the GP Learning Disability Register.
The advice states that carers can also have the vaccine if they look after someone with a learning disability.
Resources
Easy Read leaflet COVID-19 Booster
NHS Covid-19 vaccination video – This is a short film which talks about coronavirus and the coronavirus vaccine. It describes how important it is to have the vaccine and what you should do after you’ve had the vaccine.
COVID-19 autumn booster easy read invitation letter
Flu vaccination
Individuals with a learning disability can be more susceptible to getting flu, and may become severely unwell. It is recommended that anyone with a learning disability should get the flu vaccination this winter. Carers can also get the vaccination if they help look after someone with a learning disability.
The flu vaccination can be given at the same time as the COVID19 vaccination, or they can be done one at a time if preferred.
Resources
NHS Easy Read Poster – Get your free flu jab
NHS Easy Read Leaflet – Protect yourself from flu
NHS Flu vaccination video for people with a learning disability
NHS Flu vaccinations video for carers
Misfits Theatre Company video – flu vaccination misinformation
Watch as Camilla attends her flu jab appointment in this video
Flu vaccination: Simple text resources
Video on the importance of the flu vaccination – aimed at people with a learning disability and autistic people with certain health conditions
Video on the importance of the flu vaccination – aimed at carers of people with a learning disability
Learning from Lives and Deaths (LeDeR)
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
2021/22 Action from Learning report
LeDeR general practice information guide
LeDeR reviews for autistic adults
GP Learning Disability Register
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.
Resources
Improving identification of people with a learning disability: guidance for general practice
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 person-focused 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.
Quality statement 4: Annual health check | Learning disability: care and support of people growing older | Quality standards | NICE – 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.
Don’t Miss Out: get better healthcare now (A4)
Don’t Miss Out: get better healthcare now (A3)
Annual Health Check – easy read
Annual Health Check – easy read (aimed at families/carers)
Developed by the NHS England national team Harshi’s annual health check and health action plan – YouTube
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 for people with a learning disability – Southern Health
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
Here are some resources to help with the uptake of cervical screening in people with a learning disability and autistic people:
Resources
‘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.
Here are some resources to help with the uptake of breast screening in people with a learning disability and autistic people:
Guides
Cancer Research UK – Reducing inequalities in cancer screening
Films
NHS England – South West: Breast screening for women with learning disabilities film – This video looks at the work being done in Cornwall to help more people with a learning disability attend breast screening, which has seen the number surpass that of other women attending screening. Find out how they have done this, what reasonable adjustments have been used, and how carers and family members can help people with a learning disability access breast screening.
Public Health England – Breast screening film focusing on women with learning disabilities – This is long but useful film for GPs, Practice Nurses, Health Care Assistants, Parents, Carers, or anyone supporting an individual with a learning disability who is eligible for breast screening. This film could help reduce anxiety and fear of the mammogram process.
Easy read
Public Health England – Breast screening easy guide
Beyond Words – Breast screening picture story – This may be helpful to those who cannot read or do not like words.
Breast Cancer Now – What happens at a breast clinic
Letters
NHS breast screening invitation easy read letter template
South East All-age Autism Strategy
After months of hard work and co-production with autistic people and their families across our region, the South East Learning Disability and Autism Team launched the South East All-age Autism Strategy in April 2021.
This strategy was been created to address gaps in the local provision of support for autistic people and their families, which have been further exacerbated by the COVID-19 pandemic. Although in the South East we have made significant improvements over the last few years, we are still witnessing increasing rates of referrals and a rising demand for autism services which has led to extensive waiting times for those seeking support.
In response to this, the Learning Disability and Autism Team spent several months gathering feedback and engaging with autistic people and their families in order to gain insight to form a robust strategy and map out a path to significant improvement in services.
As part of this engagement work, 10 priorities were agreed upon which give the strategy a clear focus. It is hoped that these priorities and their subsequent recommendations will set out the expectations on local health services across the region, ensuring both specialist and mainstream mental and physical health services more effectively meet the needs of autistic people and their families.
Read the South East All-age Autism Strategy below:
NHSE South East All-age Autism Strategy 21-26 – No Executive summary
NHSE South East All-age Autism Strategy 21-26 W Executive summary_ Easy read version
Easy read support
Easy read is a method of presenting written information to assist those who have difficulty reading. This is widely used to communicate with people who have a learning disability, autism or both.
Creating important documents in easy read helps us meet our legal duty to communicate accessibly – vital given as of the 1st August 2016, all organisations that provide NHS care or adult social care are legally required to follow the Accessible Information Standard.
If you work within a learning disability and autism team in an ICB or elsewhere in the South East system, please contact lauren.hammond8@nhs.net should you require any support or advice regarding creating accessible/easy read documents.