New Initiatives

All About Health in the South East

A new accessible online resource to provide health information all in one place for people with a learning disability, their families, and people who support them is currently being co-produced. It will be hosted by Oxfordshire Family Support Network – a not for profit organisation.

The ‘All About Health’ initiative has received funding from Buckinghamshire, Oxfordshire and Berkshire West ICP and via the LeDeR programme. It is being developed through a partnership of advisory groups and people with lived experience of a learning disability, including members of the ‘My Life My Choice’ self-advocacy group. The project is chaired by the LeDeR Local Area Contact for Oxfordshire.

The resource will see existing information and resources on physical and mental health collated into one website. It will include guidance on: identifying and sharing good practice in all aspects of healthcare, films and real life stories already available, guidance on Health Action Plans, reasonable adjustments, and hospital passports, as well as information on specific conditions such as constipation, epilepsy and sepsis.

The website platform will be tested with support staff, families and people with a learning disability before it goes live in winter 2023 at which time it will be cascaded through the local authority, care provider organisations and shared via advocacy groups for people with a learning disability.

Oliver McGowan Mandatory Training on learning disability and autism

The Health and Care Act 2022 introduced a requirement for Care Quality Commission (CQC) registered service providers to ensure their employees receive learning disability and autism training appropriate to their role. Oliver McGowan Mandatory Training

is the Government’s preferred training to meet this requirement. Health Education England (now part of NHS England) and health and care organisations are working in partnership to deliver the training in England. The e-learning includes learning relating to issues identified in LeDeR and beyond.

Tom Cahill, National Director for Learning Disability for NHS England, discusses why he champions the Oliver McGowan Mandatory Training on learning disability and autism for health and care staff in this short film.

Adapting NHS talking therapies - a pilot in Cambridgeshire and Peterborough

A mental health condition was one of the top three long-term health conditions among people with a learning disability who died in 2021 ^[28]. A pilot launched as a result of the pandemic by the learning disability and autism team at Cambridgeshire and Peterborough ICS is working to reduce this - by improving access to talking therapies among people with a learning disability. 

The team are working with staff with a learning disability background from Everyturn (formerly Insight) – a non-profit provider working on behalf of the NHS and local authorities - to develop a service for people with a learning disability.

There are already good one-to-one psychological services in the ICS for people with a moderate or severe learning disability and reasonable adjustments are in place in the mainstream NHS Talking Therapies service for autistic people. However, this pilot intends to make the mainstream talking therapies service more accessible and has used a behavioural model to adapt the therapeutic service for people who have a mild learning disability. Residents of Cambridgeshire and Peterborough with a learning disability can be referred to the service and in future may be able to self-refer.

While a typical talking therapies group is run over six weeks, the adapted sessions in the pilot, which include therapy and strategies to manage mental health, are delivered to six people with a learning disability over eight weeks. They are run in two-hourly group sessions in person, with breaks built in.

The first cohort in the scheme have already shown signs of improvements in their mental health, and the six members of the group also opted to stay in touch - creating their own social/peer support group. A short video explaining the initiative has been produced by the clinical lead and the clinician delivering the pilot.

The overall pilot will support a further five groups of six people throughout 2023. It will then be evaluated by measuring any improvements before and after the programme – asking the person concerned, any referrers, and family/friends to provide feedback where appropriate. Improvements against any clinical measures will also be reviewed. Depending on the outcomes the ICS, along with the regional and potentially national NHS Talking Therapies teams, will consider any next steps.

Using LeDeR data to inform local population health strategies

A new tool has been launched by LeDeR which enables NHS England and ICBs to access the latest data from LeDeR reviews to help inform their plans to improve the health of their local population. The LeDeR data tool was launched in April 2023 and includes data on demography*, health, and lifestyle among people with a learning disability and autistic people whose deaths were notified to LeDeR and where a review has been completed. All local leads in the LeDeR programme manage access to this insightful tool which can be used by anyone who needs the data to improve services in their local area.

The tool provides access to pertinent information within LeDeR reviews that may have affected the person, such as AHCs, mental capacity assessments, experience of the criminal justice system or DNACPR as well as information about avoidable causes of death, concerns about care, the grading of quality of care, and any positive practices.

The tool will be used to inform national, regional and local service improvement plans by enabling users to have a much more detailed understanding of their populations, causes of death, and the inequalities people face. With this greater understanding, any improvement projects can be targeted to the areas where they are likely to have the biggest impact in improving health outcomes and preventing premature mortality for people with a learning disability and autistic people.

*statistics could include geography, deaths, income, or the incidence of disease.

Applying ‘All Our Health’

The national LeDeR team advised the ‘All Our Health’ initiative – which hosts a collection of bite-sized learning on key public health issues online – with the development of new learning disability resources. The ‘ Learning disability - applying All Our Health’ guide and a new e-learning module on learning disability were published in spring 2023. They are aimed at frontline health and care staff, ICSs, local authorities, and the wider public health workforce, to support people with a learning disability and their families. The resources, which were developed by the Office for Health Improvement and Disparities (OHID) in partnership with NHS England, also include recommendations of actions that managers and others in strategic roles can take to ensure good services and effective support where appropriate for anyone with a learning disability and their families.

All about the perimenopause and menopause

A  new easy read guide for women with a learning disability all about perimenopause and menopause has been published by  balance , the menopause support website and app, in association with  Dimensions, the not-for-profit organisation which supports people with a learning disability and autistic people. Some women can experience a number of symptoms from the hormonal changes during perimenopause – the time before a woman’s periods stop – and after menopause, that is when a woman has not had a period for 12 months. Menopause is often earlier in women with a learning disability and earlier still in women with Down’s Syndrome ^[29].

Dr Louise Newson, the GP and menopause specialist who founded balance and the Newson Health Menopause and Wellbeing Centre, also interviewed Sharon Saunders, a woman with a learning disability, for her  Dr Louise Newson podcast. The two women discussed some of the symptoms Sharon has experienced going through menopause including joint pains, headaches and hot flushes as well as the importance of asking for help. They also discuss how Sharon is starting hormone replacement therapy (HRT).

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Type 2 Diabetes – a new film

People with a learning disability have higher rates of type 2 diabetes then the general population.

The North East and Cumbria Learning Disability Network and regional partners have developed a six week course with and for people with a learning disability and autistic people who have type 2 diabetes. The course includes reasonable adjustments and structured education. In this short film Natalie explains how the course has helped her to lose weight, eat healthier and understand more about her diabetes. NHS England shared the film at the start of Learning Disability Week in June 2023.