Hole in heart

[Becky124]

Hi my sister in law has just had her 5th stroke she’s been having them since she was 18 she is now 29 and has just had another that has affected her speech.she has been told that she’s got a pfo (hole in heart) but the nhs do not have the funding to close them any more.the hospital are saying that is what is causing the strokes and her only option is to go private is this right

[Chappychap]

The British Heart Foundation (the charity who sponsor this web site) have experienced cardiac nurses whom you can telephone on 0300 330 3311. I'd definitely give them a call.

I'm a bit suspicious of the advice you've already been given. If a procedure is known to be effective then the NHS, cash strapped or not, generally finds the resources to get the job done.

[Becky124 in reply to Chappychap]

Thank you I will give them a ring. The hospital said they used to have the funding for it but don’t anymore.

[Midgeymoo17]

there has been a major restructuring to the funding of care for this type of problem. it may the hospital your sister is at no longer has funding for this procedure and she needs to go to another hospital as the new funding structure only supports certain units to do it.

[Becky124 in reply to Midgeymoo17]

Thank you that’s really helpful I didn’t even think of that we’ve tried all our local hospitals.we are in Walsall West Midlands she was referred to newcross hospital Wolverhampton and we were told that although she needs it the funding will get turned down even if they appeal and that the only way she will get it is if she pays private.she doesn’t own her house and isn’t in work due to the strokes,i don’t know how she’s meant to pay for the operation privately as it’s really expensive.

[Midgeymoo17 in reply to Becky124]

Really- sorry. I wrote that in a rush and confused it with ASD closure (is also a hole in the heart in a similar location- just bigger). Having checked just now the guidance on NHS England it corroborates what you said initially- quoting below:

"The NHS Commissioning Board will not routinely fund Percutaneous Patent Foramen Ovale (PFO) Closure for the prevention of stroke.

There is a current lack of evidence of a suitable quality or statistical significance to demonstrate that percutaneous PFO closure for recurrent stroke shows sufficient benefit for patients. The evidence is not yet of sufficient quality to make a long term judgment regarding whether or not the benefits of percutaneous PFO closure outweigh the risks or that it is good value in the context of the provision of NHS services"

Sorry- the reason ASD are often found is the same one. It may still be worth requesting a second opinion as that statement does not preclude the funding- just makes it very difficult.

[LJR1985]

Hi Becky. That sounds ludicrous. I had a TIA linked to a Pfo in May. I am not getting a closure at this stage but remaining on blood thinning meds and will be seen by cardio every two years. The advice from my cardiologist is that if it happens again I will be sent to Papworth for closure on the NHS. So that seems very odd. I live in Norfolk. Papworth does a lot of PFO closures. Check their website. I would certainly challenge this after five strokes. Clearly whatever they are currently doing is not working.

I wish you luck.

[Becky124]

Thank you very much for your advice it doesn’t seem right to us either they’ve told us its thirteen thousand five hundred for her operation and £400 extra a night If she needs to stay in but shouldn’t have to.there saying the funding was cut in 2013 for pfo so even if they apply it will be turned down.we just can’t understand how after 5 strokes they can say no.