It's time to talk about PFO closures...

We’re currently running a campaign to raise awareness of strokes caused by PFOs, with the hope that funding for PFO Closures will be reinstated by NHS England this year.

A patent foramen ovale, or PFO for short, is a hole between the two receiving chambers (atria) of the heart and is found in around 25% of the population. Ordinarily it causes no problem, but in some people and for reasons that are not well understood, it can allow a blood clot formed in the lower body veins access to the left side of the heart which connects with the brain. These blood clots are normally captured by the lungs but a PFO can allow them to pass from the right to the left side of the heart during certain circumstances and from there they can pass directly into the brain, blocking an important artery and causing a stroke.

For many of the people that we support at Different Strokes, careful investigations by their stroke doctor have concluded that the only potential cause for their stroke was a PFO. Typically medication will be prescribed to reduce the risk of a further stroke or TIA (mini-stroke), but it is right to ask whether or not a PFO should be closed. Cardiologists are able to close these holes with a low-risk keyhole procedure, but NHS England stopped routine funding of this operation in 2016 due to perceived ambiguity about its effectiveness. This has meant that more stroke survivors are living with a PFO and are on an ever-growing waiting list if funding is reinstated.

At Different Strokes we know how important this is to our beneficiaries. On the next page, we share examples of the personal impact this issue is having on some of our members.

The Personal Impact…

“A year or so after my stroke, I was tested for a PFO and this was formally diagnosed as the cause. I have had a number of TIAs (transient ischemic attacks) or mini-strokes in recent years, the most recent one being in May 2018, and my consultant has said that I need the PFO Closure operation, and will probably have another full-blown stroke at some point if I don’t have it. I live every day to the limit that I can and try to enjoy life, but I’m constantly thinking to myself ‘When will another stroke happen, and how bad is it going to be? Could another stroke be worse than the first one?’ I live with this anxiety day in, day out, feeling like a ticking timebomb. I really want this operation so that I’m able to actually get on with my life without worrying when a stroke will reoccur, and what that will do to the quality of life for me and my family.”
Ann Marie had a stroke aged 44

“I was absolutely devastated to find out that I was unable to have this operation on the NHS. I feel like there is nothing else that I can do to reduce my risk of having another stroke and that this chance has been taken away from me. I feel like it is really unfair. The impact on my children and husband if I were to have another stroke is what really plays on my mind. My eldest son, who is 10 now, has become very anxious since my stroke.
He can remember what happened to me and panics a bit when my husband is out in the evening and I am looking after him and our other children by myself. He is worried that I am going to have another one. We tell him that it is unlikely that I’ll have another but unless I have the PFO closure I don’t think I can honestly tell him that we have done everything possible to reduce my risk of another. That is heart-breaking.”
Catherine, had a stroke aged 40

A decision made by NHS England in May could change everything…

Since stopping the procedure there are now three separate recent clinical trials, all showing very strong evidence of the clinical benefit of PFO closure. These studies, in a follow up period of between 2-10 years, looked at recurrent strokes for the group of individuals where no other cause of stroke was found except the presence of a PFO. The risk of recurrent stroke in the medical therapy group was 4.5% compared to just over 1% for people who had a PFO closure.

Dr James Bentham, Interventional Cardiologist, Leeds General Infirmary said:

“This has been a difficult time for patients with a PFO who have had a stroke of unknown cause and who want to have their PFO closed. Since 2017 we have had excellent quality medical evidence published in the top ranking medical journal that has demonstrated the potential advantage of PFO closure to prevent further stroke. Unfortunately these trials were published after NHS England had begun their work evaluating PFO closure for stroke prevention and this work is now coming to an end. We are excited and hopeful that this therapy will finally become available to our patients in the UK.”

The good news is that a final decision will be made this May as to whether PFO Closure for the prevention of recurrent cerebral embolic stroke will be routinely commissioned by NHS England. Encouragingly, the provisional conclusion is that there is sufficient evidence to support a proposal for the routine commissioning of this treatment for individuals who meet relevant criteria, and a public consultation took place during March 2019.

For people in this position, reinstatement of funding would give them the chance to have the operation that they really need, and prevent them from having to make the agonising decision of whether to rely on medication only or pay around £20,000 to have the operation privately.

For anyone in this position or to find out more about this, please contact your stroke doctor for advice and discuss with them whether you meet the criteria to be referred to an interventional cardiologist to consider PFO closure.