Adrian Poulton starved to death in an NHS hospital – because he lived with Down’s syndrome

This morning I read about Adrian Poulton‘s death. He lived with Down’s syndrome and died at the age of 56 from malnutrition. Adrian was a patient in Poole Hospital, being treated for a broken hip and had not been fed for nine days. My heart broke for him, his family, and for all other people living with Down’s syndrome or learning disabled. Being unable to advocate for yourself, to communicate you are starving to death to explain that you haven’t had anything to eat is, devastatingly, a dangerous situation without an advocate.

Adrian Poulton: disgraceful death of man living with Down’s syndrome

I am the mother of a little girl living with Down’s syndrome. We have spent a huge amount of time in hospitals over the past eight years, during which I’ve observed some good practice and, sadly, some bad practice. My daughter has always had a parent there with her to advocate and help bridge the gap between learning disability and medical staff.

There is a gap. Whilst some staff have an in depth knowledge of Down’s syndrome and its associated conditions, and provide excellent medical care, there is often a lack of understanding around learning disability, how to communicate, alongside a lack of funding and infrastructure that should be in place to ensure the safety of learning disabled people. The loss of one life due to these shortfalls is a catastrophic failing. Yet this is a recurrent issue. Adrian Poulton is one example of many vulnerable people that have been failed by our NHS.

NHS catastrophically failing learning disabled people

Learning disability nurses are few and far between. If our government truly believed in health equality for all citizens, learning disabled, or not. Then there should be massive investment in having highly trained staff in place who are qualified in caring for learning disabled people. There should be mandatory and frequent training on conditions like Down’s syndrome. This is not about putting more pressure on an already stretched workforce, but investing in more specialist staff, alongside more compulsory training.

The key is investment. And attitude. I am by no means accusing all medical professionals of bias because we have some some absolutely outstanding medical professionals working with my daughter. But I would but lying if I said I had never encountered discriminatory attitudes. To be blunt, and I apologise if this is a trigger to anyone, medical professionals wrongly assumed when I was pregnant with my beautiful daughter that I would immediately terminate the pregnancy after receiving her diagnosis of Down’s syndrome. I had to basically argue why I wanted my baby girl to be born. I am one of many mothers who have experienced this bias.

Advocating for healthcare for my daughter, since before she was even born, has been a given. The physiotherapist, who refused to refer my daughter for an orthotics assessment, is a clear example of diagnostic overshadowing. The physiotherapist stated that:

children with Down’s syndrome often have ankles that bend in.

Had that been a child without a condition, whose ankles bent in, they would have immediately been referred for an orthotics assessment to be provided with corrective insoles or supportive footwear. It is not unreasonable to say that there can be bias against treating people with Down’s syndrome within our NHS. In this case, I was able to advocate for my daughter, raise a complaint, and she was granted an assessment and further support.

Adrian Poulton’s death – and other’s – should make us ashamed

Knowing that without me there, my daughter would be unable to advocate for herself, is terrifying. I read that ‘nil by mouth’ had been mistakenly added to Adrian Poulton’s notes. A learning disabled person is not necessarily able to question that. To ask why they are not being fed. A lack of communication between medical professionals and Adrian’s parents was also a factor in this tragic death. My heart goes out to his family.

The statistics are shocking. Learning disabled people are dying 20 years early, often from entirely preventable causes. These figures should make us ashamed.

Something as simple as a communication book or chart could have saved this man’s life. My daughter’s school write down important information in a communication book, such as what she has eaten and how much she has drank. This takes minimal amount of time, but is vital information that informs the care my daughter is given at home. I think we’re all aware that the NHS is drastically underfunded, with doctors and nurses run off their feet. But let’s compare. If a non-disabled person said “I haven’t been fed or had a drink today”, why would that type of communication be more important to engage with than a learning disabled person showing they were becoming malnourished through colour loss or fatigue?

Medical staff aren’t immune from the media’s ableist narratives

Being a disabled person in the current climate in the UK is hard. I am a disabled parent of a disabled daughter so believe me when I say it is. With the constant hate spewing from our government creating a narrative that a person is worthless if they can’t work, it is clear to see how biased views can spread through the population. Medical staff are no different. They can be influenced just as much by our media who trot out hateful articles on a daily basis. Our government is responsible for creating the disgust directed towards disabled people like me and my daughter. They should be held accountable.

When it comes to healthcare, which is a vital part of having a good quality of life, learning disabled people should be properly cared for and supported. I, like many other parents and carers, am terrified that something should happen to me. Without me, my daughter would not be able to access healthcare. We need medical staff to see the human being first, not the condition. Don’t assume anything. Check in, check up. By doing so they can save lives.

Feature image via UHD NHS/Youtube.