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Better care for people with Down’s syndrome shaped by call for evidence

People with Down’s syndrome, their families, professionals, and the relevant charities are being invited to answer a government call for evidence and share their experience, insight, and expertise, ultimately shaping new guidance.

The information will help ensure that health professionals are equipped to provide the very best care and support, so that those with Down’s syndrome can live longer, happier, and healthier lives.

Life expectancy has increased from 13 to almost 60-years-old within the space of a generation, meaning that tailored and specialised support is needed to meet the additional health, education, care, and housing needs.

Minister for Care and Mental Health, Gillian Keegan, said: “I know with the right support people with Down’s syndrome can live full and independent lives. We need to work together to help organisations better understand how to provide appropriate education, housing and the best possible health and social care support.

“It is time for families to stop struggling alone and this guidance will help public authorities to put the right support in place.”

The Down Syndrome Act requires the Health and Social Care Secretary to issue guidance on how to meet the needs of people with Down’s syndrome – authorities including Integrated Care Boards, the NHS, and health commissioners are the required to follow and adhere to said guidance.

People with Down’s syndrome are at an increased risk of certain medical conditions like early onset dementia, congenital heart disease, or hearing and visual impairment.

Educational and early years support may not always meet the necessary standard and can be difficult to access – the new guidance will help ensure those with Down’s syndrome are provided with the support and care they need, which could include anything from speech and language therapy to additional educational, housing, and care support.

The call for evidence will also investigate what support is currently available and what barriers remain regarding accessing healthcare. In adult social care, questions will focus on the levels of support available to ensure personal care, community engagement and relationships can be maintained.

The call for evidence is open to everyone and will run over a 16-week period.

More information is available here.

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NHE May/June 2024

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