Learning Disabilities

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

• Easy Read Programme Information Sheet
• Information Leaflet for Families

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

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

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

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

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

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 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 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

NHS 111

Act FAST 

Advance Statement

AHC Questionnaire

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

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

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