Simple healthcare changes could save the lives of people with a learning disability
Medical professionals do a fabulous job for most people, but for someone with a learning disability, a routine trip to the doctors can be a jargon-filled nightmare.
Imagine finding out you suffered a heart attack that you never knew about, despite visiting your GP at the time. This was the reality for one patient, Leroy Binns, who has a learning disability. Throughout his life he has overcome multiple health issues, but when he was told he’d suffered a heart attack he never knew about, he was understandably shocked and upset. “I just couldn’t understand the inaccessible information I was given by doctors”, Leroy explains. “Words like cardiovascular meant nothing to me at the time and I left the doctor’s having no idea I’d just had a heart attack. It wasn’t until two years later when I went back to the doctor’s that they looked at my records and explained what had happened. I was angry. I knew about people with a learning disability dying avoidably in the NHS and I was furious this could happen to me!”
Sadly, cases like Leroy’s aren’t a one-off horror story, but a regular occurrence for people with a learning disability across the country. Indeed, research suggests 38 per cent of people with a learning disability die from avoidable causes, compared to just nine per cent of the general population, with 1,200 avoidable deaths happening every year – three people a day whose lives could have been saved if they had access to good quality, timely healthcare.
Mencap commissioned research for the launch of its campaign, Treat Me Well, which aims to transform the way the NHS treats people with a learning disability. It revealed that people who work in the NHS are not being equipped with the knowledge and understanding they need in order to make simple changes for people with a learning disability.
The survey of more than 500 healthcare professionals found that almost a quarter claim to have never attended training on how to better meet the needs of people with a learning disability. A further 37 per cent feel that care for patients with a learning disability is worse than that received by patients without. And perhaps most shocking of all is that more than half of those surveyed (59 per cent) feel that the issue of avoidable deaths doesn’t receive enough attention from the NHS.
Another survey, this time of 500 people with a learning disability, mirrors this as it reveals that more than one in five (21 per cent) think that healthcare staff are bad at explaining things to them, and a massive 75 per cent say their experience of going to the hospital would be improved if staff explained things in a way that’s easy to understand.
Not just another statistic
Behind all of the numbers is a real person, just like Leroy, who has experienced the ramifications of a lack of understanding and training on learning disability. Sadly, there are many such stories.
Nicholas Jones and his family paid the ultimate price when 27-year-old Nick died one month after being admitted to hospital for emergency kidney surgery. A coroner ruled his death was contributed to by “gross failures” in his care. His mum, Sue, described Nick as a vibrant, happy, young man with a mischievous sense of humour and so much still to achieve.
“[During his time in hospital] I had to continually repeat details about Nick’s medical condition, his needs, his abilities”, explains Sue. “I often left the hospital anxious and frightened that there was no-one available to care for Nick during the night. Instead of listening to us and making reasonable adjustments, staff dismissed our concerns and we were treated as a nuisance.
“On the day Nick died, I persistently alerted staff on the ward to the fact that he was extremely unwell and repeatedly asked for a doctor to come and assess him. I was perceived to be a hysterical, over-protective mother and no-one took my concerns seriously. Nick suffered a respiratory and cardiac arrest and I was left alone to perform CPR until the crash team arrived.
“We will never forget the sequence of events that led to Nick’s preventable death. All we can hope for now is that the failures that led to it will show how vital it is for all health professionals to be trained in how to support patients with a learning disability, hopefully, then future avoidable deaths may be prevented.”
Nick’s case is an example of how simple adjustments, such as appropriately involving and communicating with his family and carers, could have helped the situation.
A way forward
The issue of avoidable learning disability deaths is nothing new. Mencap established the issue in the national agenda ten years ago with its Death by Indifference campaign and NHS England has made real commitments to make this a priority; however, this is yet to be felt by families and the pace of change in the NHS has been too slow.
Freedom of information requests we sent to NHS Foundation Trusts and English universities have revealed that almost half (47 per cent) of hospitals do not include information on learning disability in their induction training for clinical staff, and almost a quarter (22 per cent) of universities do not include training on making reasonable adjustments to the care of someone with a learning disability – which are a legal duty under the Equality Act 2010.
The Government and NHS must ensure no healthcare professional can set foot in a hospital without proper training on learning disability.
Key to this is training on reasonable adjustments, which are often very simple adjustments to things such as using accessible language, longer appointment times or having information given in Easy Read format, that would help the 1.4 million people with a learning disability in the UK get better healthcare and prevent things being missed or misdiagnosed. These are simple changes that can save lives and will not come at a cost to the taxpayer. They could even save time and money; for example, if a patient understands their condition and how to take their medication thanks to a slightly longer appointment and more accessible information, they’re more likely to take their medication properly and therefore less likely to return for another appointment.
Thankfully, Leroy is now fit and well and has the support of his family and colleagues around him, but not everyone is so lucky. Let’s not stand for another avoidable death and deprive the world of another amazing person. The solution is simple.
Sarah Gilbert is Head of Campaigns and Activism for the charity Mencap which works with people with learning disability: