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27th April 2018

What Should Care and Support look like for those Living with Learning Disabilities?


Variations in care for people with Learning Disabilities persist across the country. Some services are good at getting it right for people, and others don’t always provide the necessary support. NICE has published two new guidelines to help improve quality of care, and to ensure people with learning disabilities, their families and carers play an active role in their own care.

Both guidelines highlight the importance of local services pooling resources and organising care around the needs of people with learning disabilities and challenging behaviour, as well as providing proper support for their families and carers.

The NICE guideline on Learning Disabilities: Service Design and Delivery, focuses on supporting children, young people and adults to live where and how they want. The recommendations aim to help local services focus on prevention and early intervention, enabling children, young people and adults to live in their local communities. This should reduce the need for inpatient admissions and for people to move away from their homes and communities for care, education or treatment.

The guideline also suggests that services are designed to help people have a good quality of life, to support physical, mental and emotional well-being and to maximise choice and control over care.

Evidence shows that older people with learning disabilities are more likely to develop serious health problems such as Pneumonia, and are more likely to die because of late diagnosis. They may find it hard to access health services because of hearing or sight problems and because of the general organisational difficulties.

The NICE guideline on care and support of people growing older with Learning Disabilities was developed in the context of people with learning disabilities now enjoying a much longer life expectancy, but with the associated challenge of not being able to rely on parents as prime carers. This guideline advises health and social care practitioners to organise regular health assessments for older people with learning disabilities because they may find it difficult to express their needs and be heard. Giving people with learning disabilities clear and regular information is essential to helping them get the care and support they need and prevent late diagnosis of age-related conditions.

There's no one size fits all solution to supporting the needs of people with learning disabilities. Both NICE guidelines reflect on this and offer a clear message that, for care and support to be truly effective, it must be person-centred, bespoke and in tune with how people receiving care want to live their lives.

*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

Gillian Leng

Professor, Deputy Chief Executive and Health and Social Care Director for National Institute for Health and Care Excellence (NICE)

Deputy Chief Executive and Health and Social Care Director for National Institute for Health and Care Excellence (NICE)

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