Ellie Musgrave talks about living with her 'terrifying' condition
A woman is campaigning to get the surgery that saved her life reinstated on the NHS.
Ellie Musgrave, from Carlisle, was diagnosed with pectus excavatum - or sunken chest - when she was a child.
It's a condition that affects around one in 1,000 children.
But the operation to fix it is currently classed as 'cosmetic', so was taken off the NHS in England back in 2019, despite still being available on the NHS in Scotland, Wales and Northern Ireland.
Prior to having the surgery herself in 2018, Ellie's condition was giving her many difficulties with her chest.
She said: "When I was 16, I started having these episodes where I could literally feel my chest collapsing.
"I could feel the bones in my chest crumbling in, and I could breathe a little bit less each time I took a breath.
"And essentially what was happening is my chest was caving in more and more and I was losing more and more lung space."
Ellie says the condition left her scared and having a hazy vision as to what her future may hold.
She said: "I was terrified. I was absolutely terrified, and as well as that, at 22 I had so many things that I wanted to do with my life and be it with my career, with my education, with my social life and I knew that I couldn't do any of those things.
"I knew that once I finished university, I was going home to be looked after until I got the help that I needed because nothing nothing was getting better.
"Everything was getting worse. By the time I had my surgery, I had 1.7 centimetres between my sternum in my spine. You're meant to have about 20/25."
Ellie believes that the operation should be made available on the NHS as she says it's not just a cosmetic issue.
"I think if you speak to any patients, they'll tell you that the way that they're suffering isn't just their self-esteem and their confidence," she said.
"They'll be struggling with things like they breathe and they'll be in pain. They'll be lightheaded. And those aren't things that just happen for something that's cosmetic."
Ellie's surgeon Joel Dunning describes the decision to remove it from the NHS England as "disastrous".
He said: "England made the wrong decision to take this off the NHS.
"They did that because they did a shortcut literature review and felt that it was just a just cosmetic issue. And for some people it just causes psychological harm.
"But they made an error and didn't consider people like Ellie for which it causes cardiovascular compromise."
In a statement NHS England said: "The current decision not to routinely commission this surgery is based on advice from doctors and a lack of clear clinical evidence to support its benefits.
"However, NHS England has reviewed its policy and arrangements are being put in place for those patients with very severe pectus excavatum, with symptoms beyond shortness of breath."
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