Statement regarding the inquest into Richard Handley’s Death

The DSA has been appalled to hear of the circumstances surrounding the death of Richard Handley during the course of the inquest into his death. Our thoughts are with Richard’s family at this very sad and difficult time.

Richard, who had a number of health issues, died in hospital in 2012. The Coroner has been investigating the care Richard received prior to and during his time in hospital. The inquest into his death concluded yesterday with the coroner finding gross failures in treatment at Ipswich Hospital. He also found that changes in Richard’s care led to significant worsening of his condition, without which his death would not have occurred.

The evident lack of awareness and responsibility among so many of Richard’s care givers is shocking. Richard’s story adds 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. In some tragic cases, it is contributing to their deaths.

We continue to see reports and hear from families about the health inequalities experienced by people with learning disabilities.

A lack of communication between health and social care agencies can lead to health conditions going undiscovered or untreated.  All carers, whether health, social care or family must take responsibility to support eating, drinking, physical activity and toileting practices necessary for the good health of people with Down’s syndrome.

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. Guidance on constipation is available here.

Last year we were involved in the development of accessible resources about bowel health for adults with a learning disability, produced by Bladder and Bowel UK .

Whilst these publications are a useful visual resource for adults with a learning disability to understand their condition, they cannot replace staff who are adequately trained and have sufficient time to explain these important issues to those they care for. Accessible resources are only one aspect of this process.

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.