Statement regarding the deaths of Sandra Miller and Jackie Maguire

Carol Boys, Chief Executive of the DSA said today:

“I was horrified to read the news about the deaths of Sandra Miller and Jackie Maguire this weekend. It is frightening that people with Down’s syndrome are still losing their lives needlessly, through lack of training and awareness of the condition.”

According to Mencap, 1200 people with learning disabilities die avoidably in hospital each and every year. Tragically, Sandra and Jackie’s stories add to the evidence that poor knowledge of Down’s syndrome and its associated medical issues, a lack of resources to manage often complex health needs and discrimination within the healthcare system result in inadequate health care for many people with Down’s syndrome. We continue to see reports and hear from families about the health inequalities experienced by people with learning disabilities.

We believe that avoidable deaths can only be prevented through better understanding of the health needs of people with Down’s syndrome (by sharing best practice), improved training for health professionals / carers and support staff. Guidance documents are available from Public Heath England which summarise the reasonable adjustments that service providers should make to enable people with a learning disability access support, and are available for a range of health conditions.

The Down’s Syndrome Association  provide resources about the health of people with Down’s syndrome on our website for their families and carers.

The Down Syndrome Medical Interest Group  (DSMIG) provides information for healthcare professionals on best practice medical care for people with Down syndrome in the UK and Ireland.

The Down’s Syndrome Association Forum specifically for health care professionals has recently been developed to discuss health care, ask questions and share good practice in care for people with Down’s syndrome.

Annual health checks provides information for GPs.

The Down’s Syndrome Association continues to campaign for better health care here in the UK for those with Down’s syndrome, and are also working together with an international team of medical experts on guidelines to support the health of people with Down’s syndrome, by creating evidence-based clinical guidelines for specific medical issues which greatly impact this population. We will campaign to have these guidelines accepted by the World Health Organisation (WHO) and implemented in the UK.