Sian Mara, 35, was enjoying a holiday in Cuba with her husband Jason and her 12-year-old daughter when it happened. Sian, from Chard in Somerset, recalls: “It was just a normal day, I’d been swimming and playing volleyball in the pool with my daughter, went upstairs to get ready for dinner, had a shower and then I had a sudden headache. I felt as though I was going to pass out, so I sat on the floor so I didn’t fall and then I just couldn’t get back up again.’’

Fortunately there was a doctor on site at the hotel who was summoned by Jason. Sian was taken to hospital where she had CT scans and she was told she had had a stroke. Completely paralysed down her left side, she spent the next two and half weeks in Cuba until she was cleared to fly home.

“It was completely out of the blue,’’ she says. “I’m only 35 and was probably in the best health I’ve ever been in, going to the gym six days a week. I’d never had any health issues and no family history of medical problems. The last time I’d been to the GP before that was two years before for a urine infection.’’

At Musgrove Hospital back in the UK, they did a series of tests and found that Sian’s stroke had been caused by a hole in the heart or patent foramen ovale (PFO). This could cause another stroke.

Every newborn baby has a hole in their heart between the two upper chambers, but this normally closes shortly after birth. When this doesn’t happen, there can be an increased risk of strokes.

There is a procedure – called a PFO closure – to close a hole in the heart but the NHS in England decided to stop paying for this operation in 2016. Now, victims face a lifetime of medication or having the operation done privately, which can cost up to £20,000. Initially, Sian was relieved that Musgrove had found the underlying reason for her stroke.

She recalls: “Because I was worried they weren’t going to be able to find a cause. I thought that if you know what has caused it you can prevent it happening again.’

“I was shocked when I was told there was a procedure they can do to close the hole, a day-surgery procedure not even requiring a general anaesthetic, but, unfortunately, it’s not funded.

“In my naivety, I thought maybe I can have it done privately but, to my horror, I was told that it costs £18,000.

“Obviously I was born with this PFO and have been walking around with it for 35 years but now I know it’s there, it’s like I’m walking around with a timebomb, waiting for it to go off again.’’

Sian, who, ironically, is the deputy practice manager in a GP’s surgery, is now on medication to prevent blood clots. She is waiting for an appointment with a cardiologist in Bristol to see whether she can be classed as an exceptional case to qualify for individual funding.

Strokes, which occur when the blood supply to the brain is cut off, are the third most common cause of premature death and a leading cause of disability in the UK.

It has been estimated that about 57,000 people in England suffered their first stroke in 2016. While the rate of first-time strokes in the population has fallen by 8% since 2007 and the percentage of first-time strokes suffered by over-70s dropped from 64% to 59%, during the same period, the rate for those aged 40 to 59 increased from 15.3% to 20%.

There appear to be no figures on the number of strokes caused by PFO, but they are clearly far from rare. Sian herself knows another man under the age of 50 in Chard, population 13,000, who has had a PFO-related stroke. A brief search of the internet reveals scores of cases, many of which have been reported in the press, of relatively young people who have suffered and have then been turned down forcorrective surgery on the NHS.

Lydia Payne, from near Hereford, was a fit and active 34-year-old. One Sunday in 2016, she and her partner Philip had walked their dog and had their roast dinner, then she was sitting down making a phone call when her life changed.

The left side of her face froze, she couldn’t speak and her left side was paralysed. Fortunately her partner Philip recognised the stroke symptoms and rushed her to hospital where she was diagnosed as having had a stroke and was given emergency treatment. She had no history of high blood pressure or high cholesterol but tests revealed a large PFO.

Recovery for Lydia has been long and hard. It has taken her two years to fully regain her speech, but her walking is still not yet back to normal.
Lydia says: “I saw a heart specialist who basically told me it’s not a case of if, it’s a case of when. She said, `You have the PFO, I cannot tell you the plaque isn’t going to build again and fire off another clot. You need the surgery but, I’m really sorry, as it stands, NHS England won’t fund this surgery’.’’

Like Sian, she found that to have the operation done privately would cost around £20,000. Apart from the obvious concerns about her health and physical disabilities, the stroke has brought a whole raft of difficulties in its wake.

“My personality changed overnight. I went from being a confident outgoing person to somebody who just too anxious to leave her own house,’’ she says.

Previously she had had her own body-piercing business but she has had to close that and rely on welfare.

“Unfortunately all of the services are geared to deal with older people. So, for someone of my age, they didn’t know where to send me for physio. We went private in the end because it was going to  be 18 months before I could get a neurology appointment, but we paid £350 and I got to see him within four days.’’

She was put on blood thinners and statins but the medication brings its own problems.

“I’ve had to go on meds which make me ill. The clopidogrel [a blood thinner] is horrible and the bruises are insane and my joints hurt. “It’s horrible medication and I’m going to be on medication for life.’’

She had a hysterectomy at an earlier age, but cannot take HRT because of the blood clot risk, which puts her at greater risk of certain cancers. Lydia has two boys, aged 15 and 11. Her eldest son is registered blind.

“Obviously he’s really dependent on me, but I haven’t been well enough, so he has to spend more time with his dad and that’s really frustrating.’’

According to an NHS report on patent foramen ovale closures prepared by the Newcastle and York External Assessment Centre, carrying out the procedure in NHS England is not cost-effective.

It states: “The lifetime costs to the NHS of a patient receiving a PFOC procedure was estimated at £12,956. For patients managed by medical therapy, the total cost per patient was estimated at £7,596.’’

That’s a saving of £5,360. But, as Sian points out: “If I was to have another stroke, it’s going to cost the NHS a hell of a lot more than £5,000. Prevention is better than cure.’’

Different Strokes is an organisation which supports younger stroke survivors through active peer support and independent recovery. Lauren McMillan from the organisation says: “Unfortunately stories such as Lydia’s and Sian’s are not rare.

“Since funding for PFO closures was cut by the NHS in 2016 we are increasingly hearing from families who are living the same nightmare. “In 2017 new data was presented at the European Stroke Organisation conference in Prague, following a study which demonstrated that closing the hole can reduce the chance of another stroke by nearly 80%.

“At Different Strokes we feel it is absolutely vital that this funding is urgently re-instated. “The long-term benefits of this operation are undeniable and allow survivors and their families to move forward without living in constant fear of another stroke.”

Sian Mara echoes those sentiments: “My recovery has been so hard and the exercises have been so difficult and the thought that I’ve done all that for nothing, just to have another stroke is terrible. It’s the last thing I think about when I go to bed and the first thing I think about in the morning. It’s so frightening to live with.

“This is not just a headache, this is people’s lives. It has such a profound effect, not just on the person, but on their family as well.’’