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Following Doctors advice results in treatment funding withdrawl
FrustratedRegular
Posts: 9 Forumite
Decided to do the usual and change ID to be able to rant about a personal matter.
Due to my medical issues fertility was always assumed to be a problem but until meeting my wife wasnt a concern so hadnt been tested. When we wanted to start trying had a test done and it was fairly low but nothing that would make treatments tricky.
My wife has long term infertility issues previously diagnosed and had attempted medication based treatments with her ex for 5 years as he was deemed to be very healthy in the fertility space.
So, get referred to the local hospital, they repeat tests on both of us. Tests come back the same. They advise IVF is the way forward so an application goes in for funding. Comes back successful and passed to another hospital that has hardly any waiting list :T
We go, series of blood tests, all ok, review of wife, all ok, another test on me, never got told the results but had the appointments and was told that we need to call them on the Xth day of my wifes next cycle and an appointment will be made to come in and collect the drugs etc.
We call, and get told the registrar needs to speak to us. Speak to them and they say they were checking their files again and noticed my results had come back at absolute zero so have to abort the cycle and come in to discuss next steps.
Obv devastated and feel its wrong they hadnt checked the results earlier. Go in, get told I need to see another specialist outside of the clinic and in the NHS hospital. As about the IVF funding and told not a problem
Go see him and he says he needs to change my long standing treatment but first must wait 4 months for that to clear the system. Take new treatment for 6 months or so if it works then try to conceive naturally for a year. If that doesnt work then go back for the IVF. If the treatment doesnt work then look for a doner
Ask do we need to do anything about funding? Answer, No.
With what we were told would be a 2 year wait with no guarantees it would work the Mrs decides to go to uni, applies and is accepted.
18 months on, treatment has worked, count returned and went up into the normal range but no kids appear. Not surprising but the Dr insisted on trying naturally and his demand to have sex at least every other day wasnt all bad
Go back and see him again and he notes that in the last test my count has dropped significantly again, still there and good enough for IVF but as its unexplained best to put it on ice than risk losing it again. So he refers me back to the IVF clinic, see a new Dr there says NHS will pay for 5 years of freezing.
Speak to him about wife and her uni and not being best timing and he says not a problem, fundings in place, no time limit.
Was told a letter would turn up after the freezing confirming what they'd managed to get. 3 calls later, no replies so email one of the consultants (had never met them). They apologised confirmed the results of the freeze, and I said about the IVF being on hold which he said wasnt a problem just call when ready and they'll repeat the initial meeting again.
Fast forward to now and I get a letter from the clinic saying that I need to pay for the last 18 months of storage and the next 6 months or sign a letter to say they should destroy them. Phone them, get told "NHS never funds storage except for cancer patients". Say this isnt what I was told at the time and they suggest speaking to the CCG who have taken over funding from the PCTs.
So speak to them, nice woman, very symapthetic. Says she'll look into it and come back to me.
Get an email from her today saying that funding isnt paid for by them contrary to what the Dr said but even better, that despite the 4 Drs saying the delay was fine that actually it was the PCT that had to agree it and because we hadnt told them that funding is now withdrawn.
Obv if the Drs had told us this she would have put her uni on hold and one the IVF instead. Going to school with a kid was never going to be ideal but better than losing the chance to have a kid.
Need to work out how to escalate the complaint esp as shes just started her final year so now would be an even worse time to put uni on hold.
Havent told the wife yet, no idea how to break it to her.
Due to my medical issues fertility was always assumed to be a problem but until meeting my wife wasnt a concern so hadnt been tested. When we wanted to start trying had a test done and it was fairly low but nothing that would make treatments tricky.
My wife has long term infertility issues previously diagnosed and had attempted medication based treatments with her ex for 5 years as he was deemed to be very healthy in the fertility space.
So, get referred to the local hospital, they repeat tests on both of us. Tests come back the same. They advise IVF is the way forward so an application goes in for funding. Comes back successful and passed to another hospital that has hardly any waiting list :T
We go, series of blood tests, all ok, review of wife, all ok, another test on me, never got told the results but had the appointments and was told that we need to call them on the Xth day of my wifes next cycle and an appointment will be made to come in and collect the drugs etc.
We call, and get told the registrar needs to speak to us. Speak to them and they say they were checking their files again and noticed my results had come back at absolute zero so have to abort the cycle and come in to discuss next steps.
Obv devastated and feel its wrong they hadnt checked the results earlier. Go in, get told I need to see another specialist outside of the clinic and in the NHS hospital. As about the IVF funding and told not a problem
Go see him and he says he needs to change my long standing treatment but first must wait 4 months for that to clear the system. Take new treatment for 6 months or so if it works then try to conceive naturally for a year. If that doesnt work then go back for the IVF. If the treatment doesnt work then look for a doner
Ask do we need to do anything about funding? Answer, No.
With what we were told would be a 2 year wait with no guarantees it would work the Mrs decides to go to uni, applies and is accepted.
18 months on, treatment has worked, count returned and went up into the normal range but no kids appear. Not surprising but the Dr insisted on trying naturally and his demand to have sex at least every other day wasnt all bad
Go back and see him again and he notes that in the last test my count has dropped significantly again, still there and good enough for IVF but as its unexplained best to put it on ice than risk losing it again. So he refers me back to the IVF clinic, see a new Dr there says NHS will pay for 5 years of freezing.
Speak to him about wife and her uni and not being best timing and he says not a problem, fundings in place, no time limit.
Was told a letter would turn up after the freezing confirming what they'd managed to get. 3 calls later, no replies so email one of the consultants (had never met them). They apologised confirmed the results of the freeze, and I said about the IVF being on hold which he said wasnt a problem just call when ready and they'll repeat the initial meeting again.
Fast forward to now and I get a letter from the clinic saying that I need to pay for the last 18 months of storage and the next 6 months or sign a letter to say they should destroy them. Phone them, get told "NHS never funds storage except for cancer patients". Say this isnt what I was told at the time and they suggest speaking to the CCG who have taken over funding from the PCTs.
So speak to them, nice woman, very symapthetic. Says she'll look into it and come back to me.
Get an email from her today saying that funding isnt paid for by them contrary to what the Dr said but even better, that despite the 4 Drs saying the delay was fine that actually it was the PCT that had to agree it and because we hadnt told them that funding is now withdrawn.
Obv if the Drs had told us this she would have put her uni on hold and one the IVF instead. Going to school with a kid was never going to be ideal but better than losing the chance to have a kid.
Need to work out how to escalate the complaint esp as shes just started her final year so now would be an even worse time to put uni on hold.
Havent told the wife yet, no idea how to break it to her.
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Comments
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Didnt realise how long that had got. Sorry.
Not sure what Im asking or expecting from here either. Putting something out there and venting can help though0 -
I suspect is that what they have meant to say is because of the timescale, you would need to apply again in case there were changes in your circumstances and you don't meet the criteria any longer. Treatment can be postponed and funding can remain in place, but not after a couple of years or more.
Don't despair though, it is likely that you need to apply again, but it does not mean that it won't be granted again. Get your or your wife's consultant to re-apply and follow it up with your CCG to avoid unecessary delays.0 -
I suspect is that what they have meant to say is because of the timescale, you would need to apply again in case there were changes in your circumstances and you don't meet the criteria any longer. Treatment can be postponed and funding can remain in place, but not after a couple of years or more.
Roughly is what they are saying but the Drs had said the 3-4 years of uni wasnt a problem either medically or funding wise
You are missing the paying £600 for storage to date and £300 a year going forward thoughGet your or your wife's consultant to re-apply and follow it up with your CCG to avoid unecessary delays
She doesnt have a consultant, she was discharged from the consultant as soon as they agreed IVF was the route forward. We only saw them at that clinic twice, an initial appointment where tests were organised and a second appointment where they said test were on paper all perfect for both of us other than her known PCOS and as hormones consistently show shes ovulating there is no point doing anything other than IVF0 -
Well a slight plus, the IVF clinic have admitted they made a mistake over the cost of storage so have agreed to waive the fees to date and the rest of this year and then a reduced fee going forward.
On the downside, everyone is saying what the doctors told us was wrong, that the PCT failed to tell us we needed to do anything else but despite that funding is still withdrawn.
No idea how to tell the wife without (a) upsetting her or (b) having her go ballistic.
How would you tell your partner that following the Drs advice now means you cannot have treatment?0 -
You can't not tell her.....People don't know what they want until you show them.0
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FrustratedRegular wrote: »How would you tell your partner that following the Drs advice now means you cannot have treatment?
Have they said that no future funding will be forthcoming? Or is it just that your previous funding application has lapsed?
As far as telling your wife, just tell her. Avoiding upset is probably impossible, so just be yourself and tell her the truth. This affects both of you.0 -
Is it withdrawn for good or do you need to apply again?0
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Kayalana99 wrote: »You can't not tell her.....
That depends if I can argue for it to be reinstated as all we did is follow the advice of the doctors. If I can, there is little point in making her angry by telling her it was ever withdrawn - she isnt a rational/sensible person when annoyed/wrongedIs it withdrawn for good or do you need to apply again?
They said we would need to go back through being referred to a consultant, repeat the tests (took about 18 months last time) again, assuming they agree IVF is the way forward then applying again. They will consider if we are eligible for funding, considering we have had previous funding (though no actual attempts) and if successful then go back to the bottom of the waiting list.
Obviously they may decline next time having already had previous funding and some of it spent. Of cause in the time all this will take the NHS/ local rules for funding may change. When we actually moved to this area the local PCT werent funding IVF but because the prior PCT had approved it they had to partially honour it (they did reduce it from 2 cycles to 1 cycle of funding)
Even if it does all go relatively smoothly you are talking at least a 2 year delay which if you believe the NHS Choices stats reduces the chances of success by almost a third and adds a lot of stress to both of us. All because we trusted what the Drs told us was true.0 -
A good place to look for advice on getting your funding reinstated would be on the Fertility Friends Forum. Sorry, can't post a link to it at the moment, but googling will find it. Sadly lots of people have to fight to get treatment so you should be able to get good, practical advice from those who have actually had to do it.
Please don't put off treatment for too much longer as it could still take you many years before you have a baby. IVF is not a magic solution, and with you both having fertility problems the chances of success are already going to be diminished. It took us over 5 years and cost us well over £20,000 to have our daughter so I know too well what a physically and emotionally draining process it is.
Hopefully you can get the funding sorted and you have a happy ending to your story.0 -
Go private .. Or adopt.
PCT would not fund my chemo being given to me in a less toxic way as the bean counters in "N.I.C.E" state it wasn't cost effective to treat in that way. As I couldn't afford to do fund it myself privately i had to accept their decision.
The nhs isn't a never ending money pit sadly hard choices have to be made.Spelling courtesy of the whims of auto correct...
Pet Peeves.... queues, vain people and hypocrites ..not necessarily in that order.0
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