We were shocked and very saddened to hear, at her inquest, more of the details surrounding the death of Sally Lewis, a woman who had a learning disability who died at the age of 55, as the result of complications resulting from constipation.
We send our sincere condolences to Sally’s family and all those who mourn the loss of their friend. This must be especially distressing, since this process has taken such a long time to conclude, as Sally died in 2017.
We know that constipation can be an issue which affects many people who have Down’s syndrome as well. Often what starts as a treatable condition can sometimes escalate to become far more serious and, as with Sally, life-threatening.
We are pleased to be working with the LeDeR team. LeDeR are the independent body which monitors health inequalities and premature deaths of people who have a learning disability in England.
One of the projects we have collaborated on is the development of new, easier to understand NHS resources for individuals who have a learning disability, their families, support staff and health professionals to open-up healthy discussions about bowel health and constipation.
People who have Down’s syndrome have made a valuable contribution to the creation of the new materials through the DSA’s Our Voice groups, sharing their valuable lived-experience, commenting on draft versions of posters and animations.
We hope that these new materials (which are due to become available next month) will go some way in preventing other avoidable or premature deaths like Sally’s.