An investigation has been launched in to the appalling care a vulnerable patient received whilst he was admitted to an NHS hospital in the South of England. Mr Adrian Poulton who was fifty-six received no food or water for nine days and this tragically led to his death soon after. The Downs Syndrome Research Foundation have offered their deepest condolences to Adrian’s family regarding his wrongful death and have declared that they will fight for equity and appropriate safeguards to be urgently put in place to ensure that the rights of Downs Syndrome sufferers are protected and adequately catered for. It is clearer than ever that Kim Leadbeater’s proposed Assisted Dying Bill tramples on these sensitive issues, without due regard to specific vulnerabilities and current failures in end-of-life care.
“It is deeply shocking that after so many years of reports and inquiries into avoidable deaths of people with learning disabilities, these horrific avoidable deaths still happen. This terrible story should be headline news. Compulsory staff training on how to support people with learning disabilities should be a priority for hospital trusts everywhere, but they also need to look at their systems for communicating between staff and services involved in the care of people with learning disabilities.”
That’s according to Professor. Irene Tuffrey-Wijne, Professor of Intellectual Disability & Palliative Care at Kingston University who released a statement regarding the investigation which was launched recently.
Kingston University Research Assistant Richard Keagan-Bull, who has a learning disability, responded to the news of Mr Poulton’s death:
“It’s absolutely disgraceful, horrible and upsetting. He came in for a broken hip and then he didn’t get any food. It doesn’t matter how old or young you are or whether you have disabilities, you should be treated with respect and given all the right care. We keep hearing those stories. When will they stop?”
There have been many investigations in to the state of end-of-life care in the UK. The majority of these have revealed that people with learning disabilities tend to die decades earlier than the general population.
The 2023-2024 LeDeR report which was only released last month highlights the lack of staffing and mortality rates among people with intellectual disabilities. It has also taken four years for current news stories to break highlighting the urgency for more action to be taken to assess the current situation.
In light of these issues, DSRF UK Chair Dr Elizabeth Corcoran states:
“We denounce the fact that the Assisted Dying Bill does not explicitly protect the rights of people with intellectual disabilities, as we consider that this will push heavily in an extremely dangerous direction. There are simply too many cracks in the UK’s healthcare system for further pressure to be added. Rejecting the Bill is the best course of action to explicitly protect people with Downs syndrome from euthanasia. We call on Peers in the House of Lords to firmly reject the Assisted Dying Bill. Such damning emerging evidence on prematurely occurring deaths of people like Adrian Poulton who have intellectual disabilities is a scandal that we cannot allow to continue unchecked.”
Down’s syndrome is caused by an extra copy of chromosome 21 in all or some cells of the body. A person with Down’s syndrome will have some level of learning disability. This means they will find it harder than most people to understand and to learn new things. They may have communication challenges and difficulty managing some everyday tasks. People with Down’s syndrome have distinctive facial features but they do not all look the same.
Most children with Down’s syndrome go to mainstream schools but will need extra support. Some health problems are more common in people with Down’s syndrome. These include heart conditions and problems with hearing and vision. Many health conditions can be treated. Unfortunately, around 5 out of every 100 babies (5%) will not live past their first birthday.
If you have any experience of living with down syndrome and would like to access forms of help and support, please visit:
