Many of the people that we support at Different Strokes have received the news that the only potential cause for their stroke was a PFO (patent foramen ovale) commonly known as a ‘hole in the heart’.  Typically medication will be prescribed to reduce the risk of a further stroke or TIA (mini-stroke).  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 eventually reinstated.

Last year we shared Catherine’s Survivor Story following her stroke in 2017 aged forty. You can read her story HERE. Today, Catherine shares how the decision by NHS England to cut funding for the PFO closure operation is impacting her and her family.

“It was about six weeks after my stroke in July 2017 that I went and had a bubble scan that identified I had a PFO.

Prior to this I had lots of other tests to try and work out the cause of my stroke – I had an MRI to check the blood vessels in my neck hadn’t dissected, I had a heart echocardiogram  and blood tests to check for unusual  clotting factors,  all when I was an inpatient immediately after my stroke.  These tests all came back negative.  My blood pressure and cholesterol were normal too.

I found the bubble scan fascinating.  I was injected with saline into my arm.  The saline had been agitated so had lots of bubbles in it.  The cardiologist performed a heart echocardiogram (echo) and we watched the bubbles enter the top chamber of my heart and saw a few travel across through a hole to the other side of my heart.  The doctor asked me to cough and pushed down on my tummy to increase the pressure and both of these things increased the flow of bubbles.

I was then referred for a trans-oesophageal echocardiogram (T.O.E.) which is a more detailed scan of the heart.  A camera was inserted down my oesophagus and the cardiologist was able to see my heart structure in more detail.  The TOE confirmed the presence of a PFO.  It also confirmed that I have an atrial aneurysm which I understand increases my risk further.

In a way, I felt relieved that the cause of my stroke had been identified.  I was then referred to a surgeon to discuss the closure of the PFO.  He talked through risks and benefits of closure and informed me that evidence to support closure was increasing and he thought it was worth doing for me.  I signed all the consent forms for closure and went away to wait for a date for the pre-op assessment.

In the meantime, the consultant rang to inform me that I would need to ask my GP to request funding.  I contacted my GP who did an independent funding request for me.  This was declined by the commissioning team as funding is not available for this procedure.

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.  I’m a fit and healthy working mum.   I do all that I can to stay healthy – I eat a balanced diet and exercise to keep fit. I don’t feel like I could do anything more myself to prevent further strokes. My husband and I have worked for the NHS for almost twenty years and I feel angry that I am being denied the one thing that would help lower my risk of another stroke.

The operation would offer me closure – not just physically but also psychologically.  I am desperate for the peace of mind it would afford me and my family.

I have a friend from university who also had a stroke a few years ago due to PFO and had his closure done on the NHS then.  It seems unfair that funding was available but has been taken away.

The worry of the possibility of another stroke is constantly on my mind.  I wear a medical alert bracelet with my husband’s phone number on it when I am out by myself or with our three children just in case something happens. Sometimes I worry that things that wouldn’t have bothered me before the stroke, like pins and needles or a headache, could be the signs of another stroke.

The impact on my children and husband if I were to have another stroke is what really plays on my mind.

I feel sad that I have to live with this constant anxiety of knowing the cause of my stroke but not being able to have the necessary treatment.

My eldest son, who is ten 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.  If I drop something and he hears a noise he straight out of bed to check that I’m OK and often tries to stay awake until my husband is home.  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. 

I think my husband and parents worry about the risk of me having another stroke too but they don’t share those thoughts with me.

If I could speak to the people making this decision I would ask them to try to imagine the constant stress and worry caused to those of us in this situation, who live with on a daily basis. 

I would ask them to come and see my son when he is in tears worrying about me and explain to him that there is a procedure, which until recently was available on the NHS, that mummy would love to have done as it is the only possible thing that could help lower the risk of another stroke but actually it is no longer available so she cannot have it.

I would like them to imagine having a life-changing (and potentially life-threatening) illness, finding out the cause and being told that something could be done but the necessary treatment isn’t funded on the NHS. “

This vital decision that is affecting Catherine and so many others 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.

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. In March we wrote to over two thousand neurologists and cardiologists and asked them to use their voice in the consultation and advocate for funding to be reinstated. 

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. We will keep you up to date with this important issue in the coming months.