PCPLD Network

"Lessons learnt from avoidable deaths of people with learning disabilities or autism. People with learning disabilities are at risk of dying too young, and dying unnecessarily. The Learning Disability Mortality Review (LeDeR) in England has found that too often, those deaths are a result of failings within health and social care provision. Reflecting on this has never been more important – during the pandemic, the inequalities that many people with learning disabilities face have been put show more into stark focus. Today we focus on the stories of Oliver’s and Richard's deaths, and on what lessons we can all learn from this. Oliver McGowan died in 2016. He was 18 years old. Oliver had mild learning disabilities and autism. A recent independent LeDeR review concluded Oliver’s death was avoidable. Richard Handley died in 2012 at the age of 33, from complications arising from constipation. He had Down syndrome and mental health problems. The inquest into his death concluded that their had been “gross failures” in his care and treatment. Paula McGowan and Sheila Handley share the stories of their sons’ lives, and of the healthcare failings that contributed to their deaths. Oliver’s and Richard’s stories are profoundly important and profoundly moving. ... In this webinar, you will not only learn what can go wrong, but also what can be done to make sure things go right for people with autism and learning disabilities who need healthcare. This is an important learning opportunity for all health and social care staff, service managers, commissioners and policy makers. It will also be of interest to anyone affected by these issues, including families and carers." show less

"The Covid-19 pandemic has exposed huge problems with the way Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are made, understood and communicated with people with learning disabilities and their families and carers. There have been reports of unlawful blanket decision-making and of DNACPR orders noted without discussion with the people involved.

In this webinar, we will focus on some of the questions that have been raised over the past year. What exactly is DNACPR? Why are show more the terms DNR or DNAR unhelpful, confusing and potentially dangerous? In what circumstances is CPR not a good option, and DNACPR therefore appropriate? How should those decisions be made? Who should be involved? What if the person lacks capacity for a DNACPR decision – how can we make decisions based on best interest?

We will hear people’s experiences with DNACPR decisions.

Speakers: Dr Claud Regnard (Honorary Consultant in Palliative Medicine), Dr Kathryn Mannix (Palliative Care Physician & author) and Baroness Ilora Finlay (chair of the National Mental Capacity Forum).

We will also hear the personal experiences and views of Muireann Ní Riain (Acute Liaison Nurse for Learning Disability), Sharon Prowse (manager of a learning disability service), and Terry Barlett & Luise DeLarua (people with lived experience of learning disability). show less