From neglect to a lack of communication, the health inequalities experienced by people with learning disabilities are well known – and mean that this group dies an average of 20 years earlier, often owing to preventable or treatable conditions writes Saba Salman.
But what gets less attention are the emergency healthcare barriers faced by learning disabled people who are also wheelchair users, such as campaigner Phil Hughes of Learning Disability England.
Despite duties under the Equality Act 2010, most NHS trusts, including ambulance trusts, do not have a formal policy relating to emergency transportation for patients who want to keep their wheelchairs with them.
A wheelchair user taken to hospital without their wheelchair is denied their independence. But, if they refuse to travel without it, they risk going without the emergency care they need.
Hughes, a self-advocate with Learning Disability England, works to raise awareness about the emergency healthcare experiences of wheelchair users.
He is also a member of Sunderland People First, part of its Stop People Dying Too Young campaign group and has helped raise awareness locally of dysphagia (difficulty in swallowing), of which he has experience.
The backdrop to Hughes’ campaigning work includes the government’s recently published 10-year plan for the NHS in England, which aims to shift care from hospitals to communities and place a greater focus on prevention.
While the plan acknowledges the health disparities experienced by learning disabled people, campaigners have criticised the lack of detail about tackling health inequality for this group.
For example, Tim Nicholls, assistant director of policy, research and strategy at the National Autistic Society, has raised concerns about the absence of a clear plan for issues impacting autistic people and on waiting times for autism assessments.
“We, and many autistic people and their families, are worried by this lack of clarity,” he says.
In addition, the Department of Health and Social Care has drawn criticism for delays in publishing its annual investigation into the deaths of every adult with a learning disability and/or autism – the Learning from Lives and Deaths Report (LeDeR).
The report on deaths in 2023 has only just been released and shows little change in the health inequalities experienced.
‘I don’t use ambulances any more. There just isn’t the equipment or flexibility for people like me’
The inability of ambulances to transport patients with their wheelchairs can lead to unsafe and delayed care, yet talks with healthcare providers about this seem fruitless, writes Phil Hughes
The ambulance crew wouldn’t let me take my wheelchair with me, and they insisted I lie down on the stretcher instead. I was vomiting and struggling to breathe.
Being unwell had already put me in a vulnerable position, but not having access to my wheelchair made me feel even more exposed and unsafe.
I don’t use ambulances any more. My sister, Karen, who supports me, tells them that I can’t be transported in a standard ambulance without my wheelchair.
can be dismissive.
Instead, they have to use different transport, such as the accessible ambulance vehicles people use to come home from hospital.
We usually need to go in when I’m vomiting, which makes it even more dangerous for me to lie down. It’s just not safe.
Angry and scared
These experiences made me feel very angry. Karen said she felt really scared. She told me, “I’m supposed to be there to protect him – and I couldn’t.”
Since then, we’ve been to a lot of meetings at healthcare organisations and raised this with people who work in the NHS and ambulance services. I’ve also brought it up at the local Learning from Lives and Deaths meetings.
But, to be honest, I feel I’m not getting anywhere with it. I keep asking questions, trying to get answers, but it’s frustrating.
We’ve got another meeting coming up this autumn, and we’ll see if anything changes then.
The responses we receive when we talk about ambulance transport and wheelchairs are basically that the current system works for the majority of people – and that we’re in the minority. That feels dismissive and as if our situation doesn’t matter.
The problem is the rules are too strict, and there aren’t enough ambulances that can safely take people in wheelchairs. It’s clear there just isn’t the right equipment or flexibility in the system for people like me.
Even though I don’t personally know lots of others in this situation, that shouldn’t matter.
We do know a mother who uses a wheelchair who wasn’t allowed to travel with her two-year-old daughter when her child was blue-lighted to hospital.
My sister Karen says: “Anyone who relies on their wheelchair for support will have faced this issue.
“One person we know doesn’t even call 999 because of it. The stretcher beds in ambulances just aren’t made for someone with complex needs.
“And when you’re really poorly, your wheelchair becomes even more essential.
“It’s also about how people communicate – once, they tried to take Philip off his chair without realising there was a groin strap. If they’d pulled too quickly, he would have ended up on the floor.”
NHS England should find a solution because it’s about safety – and lives. The ambulance is a first responder and should be equipped to help everyone.
At the very least, the service should have adapted vehicles that allow someone like me to stay in their wheelchair. If they can’t transport you properly, they’re more likely to treat you at home, which delays getting the care you really need.
It’s important for me to campaign on health inequality because I want to stay alive and have the same opportunities and rights as everyone else. I want to be valued equally, to live a full life and not be treated as less than other people.
People without disabilities should support the work to improve healthcare for those who have disabilities because we all live in the same world.
Without the support and understanding of others, our lives can be misunderstood and undervalued. Everyone has a role in making things better.
Phil Hughes is a self-advocate with Learning Disability England. He was supported by his sister Karen to contribute this article
