Learning Disabilities

A learning disability is a reduced intellectual ability and difficulty with everyday activities - for example household tasks, socialising or managing money - which affects someone for their whole life. People with a learning disability may take longer to learn and may need support to develop new skills, understand complicated information and interact with other people. The level of support someone needs depends on the individual.

Support for people with learning disabilities during COVID-19 outbreak

People with learning disabilities face considerable health inequalities and this will be no different during the COVID-19 outbreak. Below is a selection of resources which are available for people with learning disabilities, their families and paid-for carers:

Public Health England has produced an easy-read document explaining why it’s so important for people to keep their distance from others during the coronavirus crisis.

COVID-19 Easy Read Documents

All about COVID-19 Loss & Grief

COVID-19 Visitors Guidance

COVID-19 Grab and Go

COVID-19 Communication Chart

COVID-19 Pain Scale

COVID-19 What happens if I go into hospital

COVID-19 Why we wear PPE

Pulse Oximeter Easy Read Document

COVID 19 - Vaccination

National Lockdown - Stay at Home

Flu Vaccine Resources Package

We have developed a package of resources including newsletter copy, easy read documents (leaflets, posters, cards etc.), videos and more:

Communications toolkit, containing:

Context of premature death rates and reasons
Key messages
What GP surgeries can/should be doing
Collation of best available resources
Videos – Camilla getting her vaccine and a new collaborative with the misfits theatre company
Template newsletter / bulletin copy
Template press release
Regional advocate letter – empowering for carers/families coming up against barriers e.g. “not entitled to a free vaccine”. The letter outlines the key guidance and evidence to prove they are.
Social media messaging and graphics

Alongside the communications toolkit there is a grab pack for professionals – pulled together by our South West learning disability nurses network to aid increasing uptake. Good resource to flag with practice managers / primary care and CLDT (community learning disability teams). The pack includes tips on reasonable adjustments, a mental capacity check sheet, easy read invite letter/cards plus info on blood tests.

Lastly, we published a new flu awareness video this week – on behalf of the NHS, Misfits Theatre Company tackles the misinformation surrounding the flu vaccination head on and urges people with learning disabilities and their carers (family member or support worker) to not delay, and get their free flu vaccine today.

Learning Disabilities Mortality Review (LeDeR) Programme

The Learning Disabilities Mortality Review (LeDeR) Programme is delivered by the University of Bristol. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England. Work on the LeDeR programme commenced in June 2015 for an initial three-year period.

A key part of the LeDeR Programme is to support local areas to review the deaths of people with learning disabilities‌. The Programme is developing and rolling out a review process for the deaths of people with learning disabilities, helping to promote and implement the new review process, and providing support to local areas to take forward the lessons learned in the reviews in order to make improvements to service provision. The LeDeR Programme will also collate and share the anonymised information about the deaths of people with learning disabilities so that common themes, learning points and recommendations can be identified and taken forward into policy and practice improvements.

Who can notify us of a death?

Anyone can notify us including people with learning disabilities themselves, family members, friends and paid staff.

Click here to notify us of a death online

or call us on 0300 777 4774

Please click on the link below to read about the Learning Disabilities Mortality Review Programme

Useful Links

Learning Disabilities Mortality Review (LeDeR) Programme

LeDeR Annual Report 2019 - 2020

LeDeR Annual Report 2020 - 2021

LeDeR Annual Report Easy Read version 2020 - 2021

What we are doing in St Helens

The CCG are working to deliver the Learning Disability Mortality Programme (LeDeR) in St Helens to aim to make improvements to the lives of people with learning disabilities in the Borough. Reviews of deaths are being carried out with a view to improve the standard and quality of care for people with learning disabilities. In St Helens a local LeDeR Steering Group has been established to support the delivery of the programme. Further to the steering group, the CCG Engagement Lead chairs a sub group which focuses on Communications and Engagement. Attendees include St Helens CCG, Healthwatch, Local Authority, Northwest Boroughs and Carer Representatives. The purpose of this group is to review all easy read documents to ensure suitability in our local community and be able to embed a resource library for use in Primary Care. Each member is allocated a document for review and will share feedback at the sub group meeting. Once appropriate amendments are made this is shared with local learning disability groups, parents and carers to obtain further comments in relation to the format and content. The group updates the documentation based on patient feedback and will then share appropriately with multi-agency partners (to communicate throughout the Borough and to maintain consistency) and upload to the CCG website. The CCG has also identified a clinical lead who is also a member of the CCG Governing Body to support on any clinical information contained within the documents. For more information on this group please contact:

Paul Steele, Engagement Lead
Paul.Steele@sthelensccg.nhs.uk

Accessible Information Standard

In 2016 NHS England published the ‘accessible information standard’. The documents set out what health and social care organisations have to do to make sure that anyone with a disability or sensory loss can get the information they want in a way that they can understand or get the help they need with communication.

NHS England: Making health and social care information accessible

Annual Health Checks for people with learning disabilities

Guidance and resources to help GP's, practice nurses and primary care admin team organise and perform good quality Annual Health Checks on people with a learning disability are available here

Learning Disabilities and Cancer

It can be difficult for people with learning disabilities to find suitable information about cancer. There are books and leaflets available on cancer for people with learning disabilities from Cancer Research UK

Red Flag Symptoms of Cancer video

Learning Disabilities and Constipation

This information has been produced to help families and carers of people with a learning disability recognise the signs of constipation and help manage the condition.

Please click here for guidance on constipation for people with learning disabilities

Learning Disabilities and Diabetes

Diabetes UK provide resources to improve care for people with diabetes and a learning disability.

Easy read leaflets are available here

For professionals: NHS Rightcare Pathway: Diabetes - Reasonable adjustments for people with a learning disability who have diabetes

STOMP - Stopping over medication of people with a learning disability, autism or both

STOMP stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines. It is a national project involving many different organisations which are helping to stop the over use of these medicines. STOMP is about helping people to stay well and have a good quality of life.

Psychotropic medicines affect how the brain works and include medicines for psychosis, depression, anxiety, sleep problems and epilepsy. Sometimes they are also given to people because their behaviour is seen as challenging.

People with a learning disability, autism or both are more likely to be given these medicines than other people.

These medicines are right for some people. They can help people stay safe and well. Sometimes there are other ways of helping people so they need less medicine or none at all.

It is not safe to change the dose of these medicines or stop taking them without help from a doctor.

Public Health England says that every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.

Psychotropic medicines can cause problems if people take them for too long. Or take too high a dose. Or take them for the wrong reason. This can cause side effects like:

putting on weight
feeling tired or ‘drugged up’
serious problems with physical health.

Easy read leaflet about the project

Easy Read Documents

Easy Read is an accessible format for providing information designed for people with a learning disability. The easy read format is easy to understand because it uses simple, jargon free language, shorter sentences and supporting images.

We work with North West Boroughs Healthcare NHS Foundation Trust, our local learning disability group, to create and review Easy Read communications materials for local campaigns. Our Engagement, Involvement, Communications and Patient Experience Lead regularly attend group meetings to talk about current or upcoming projects and ask the group for their help in creating supporting Easy Read information.

NHS England easy read documents

Stay well leaflet

Blood in your pee - clear on cancer

Tummy troubles tell your doctor - clear on cancer

Breast cancer

Cough - clear on cancer

Check before you tick

2018 National Framework for Continuing Healthcare

Getting tested if you have signs of Coronavirus

Having swabs taken

What happens when being tested for Coronavirus

Going for a virus test

Gold Standard Annual Health Check

What we are doing in St Helens

In St Helens a local LeDeR Steering Group has been established to support the delivery of the programme. Further to the steering group, the CCG Engagement Lead chairs a sub group which focuses on Communications and Engagement. Attendees include St Helens CCG, Healthwatch, Local Authority, Northwest Boroughs and Carer Representatives. The purpose of this group is to review all easy read documents to ensure suitability in our local community and be able to embed a resource library for use in Primary Care. Each member is allocated a document for review and will share feedback at the sub group meeting. Once appropriate amendments are made this is shared with local learning disability groups, parents and carers to obtain further comments in relation to the format and content. The group updates the documentation based on patient feedback and will then share appropriately with multi-agency partners (to communicate throughout the Borough and to maintain consistency) and upload to the CCG website.

The CCG has also identified a clinical lead who is also a member of the CCG Governing Body to support on any clinical information contained within the documents. For more information on this group please contact:

Paul Steele, Engagement Lead
Paul.Steele@sthelensccg.nhs.uk

Pre - Annual Health Checks Document

Please click here for the document on Pre - Annual Health Checks.