Man plagued by strokes appeals for funding help

PUBLISHED: 16:00 20 April 2017 | UPDATED: 16:00 20 April 2017

Jason Missen

Jason Missen

Archant

A 22-year-old man from St Ives who is so used to having a stroke at work that he’ll just “sit down and wait until it’s passed” is unable to get treatment due to a lack of NHS funding.

Every couple of weeks, call worker Jason Missen is blighted by paralysing mini-strokes and, more often, painful migraines – symptoms of a hole in his heart, or patent foramen ovale (PFO), which he was diagnosed with in 2014.

“A couple of years ago I had a stroke at work,” he said.

“My right-hand side dropped and I couldn’t speak or walk. No one saw at the time, but I told my colleagues and went to Hinchingbrooke Hospital. The hospital said it was all gone and I was discharged three hours later.

“I went to work the next day, but a week later had another one and everyone saw it. It lasted about five minutes, and I had seven more that day.

“I had an MRI scan and a CT scan that showed a bleed on the brain. They said it was a blood clot and gave me some tablets.”

Every newborn baby has a hole in their heart between the two upper chambers, but this normally closes shortly after birth.

For Jason, this didn’t happen and means that oxygen escapes from the left-side of his heart into the right, causing the mini-strokes and migraines.

“I feel helpless when I’m having a stroke,” he said.

“Most of the time, it happens for a couple of minutes and sometimes I go to hospital, but I rarely do because there’s nothing they can do, so I go back to work.

“If a stroke comes I go back to work or sit down and wait until it’s passed. I first notice when I get pins and needles in my right arm and when I try to move it but can’t and my right side drops. I tell my supervisor and then take a little break.”

Although Jason has had a recorder placed on his heart to see if his heart rate has an impact on his strokes, the condition can be fixed with keyhole surgery – a procedure which can be completed in a day and costs about £25,000.

“I didn’t know what to do,” Jason said.

“I was still having these migraines [after the tests] so I asked the hospital if I could be considered for this operation at Addenbrooke’s Hospital. They said they would get back to me, but I waited for a year and no one would ever get back.”

In February, Jason went to his GP and was referred to Papworth Hospital, but was told there was a “current pause” in funding for the procedure.

He said: “It’s not a major operation and you’re in and out. I’ve had to go part-time at work, but hopefully this would mean I get to go back to work full-time.

“It’s very draining and I have to take time off work and nothing’s happened,” he added.

“I try to stay positive and I’ve always looked to do that, but I have found it quite difficult recently, knowing it’s not possible to get better.”

Jason said he’s not sure whether the strokes will get worse, or even prove fatal, and that other than fitting a pacemaker, not much more can be done for his heart.

As a result, he’s set up a parliamentary petition to get PFO funding back.

A spokesman for Papworth NHS Trust said: “The patent foramen ovale (PFO) closure procedure is not currently funded by the NHS, although we were recently able to treat a number of patients as part of a trial run by NHS England.

“Unfortunately, until the results of this evaluation are known NHS England is not yet in a position to allow this procedure to be considered for future funding. Until a decision is made we would advise patients affected by this to contact their consultant to discuss treatment options.”

To sign Jason’s petition, visit change.org/p/uk-parliament-funding-for-pfo-closures.

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