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6 August 2019

NICE publish updated Quality Standard – ‘Learning disability: care and support of people growing older

A joint article from the Growing Older with Learning Disabilities Group

The Growing Older with Learning Disabilities (GOLD) Steering Group has welcomed the new NICE Quality Standard (quality standard [QS187] regarding “Learning disability: care and support of people growing older”.

We hope these standards will prove useful in encouraging forward planning for people with learning disabilities as they mature. It is important that everyone recognises that these quality standards relate to people with learning disabilities of any age, as they are designed to encourage proactive action. As a group we welcome any steps to mitigate the disturbing statistics that the recent LeDeR report highlighted regarding the reduced life expectancy of people with learning disabilities.

As the quality standards note, some people with a learning disability are more likely to be susceptible to conditions of ageing from early adulthood and this needs to be acknowledged, however, this does not mean that professionals and supporters should presuppose that because someone has learning disabilities they will age more quickly or have a lower life expectancy. We should assume that all people have a ‘normal’ life expectancy and adjust that expectation according to other co-existing medical conditions. There is a concern that by not defining the age range associated with growing older, the guidelines reinforce the assumption that people with learning disabilities will die younger than the general population.

The quality standards acknowledge the importance of not just being physical healthy but of having a varied and interesting quality of life and the GOLD group would echo that as a crucial point.

Lastly, having a named professional to coordinate care as a person ages will be a great boon, as long as they are actively involved in the person’s life, working closely with the person; their family; their supporters and all professionals involved in their care.

Alongside the recently published Learning Disability Service Standards from NHS Improvement, these NICE Guidelines take an important step towards improving the consistency and quality of care received by people with learning disabilities and we hope to see an improvement in people’s health outcomes as a result.