# End of tether with South Wales NHS IVF



## MissMayhem (Feb 24, 2013)

Hi all sorry to be a gloom and doom and apologies to the two girls I previously pm don't want to be rude but don't want first time I make contact in ages to be a moaning. Am really sorry to be negative as know we're all in the same boat here vut is  anyone else having a nightmare since they did this new super clinic at Neath??! We were told months back we couldn't start IUI as clinic was closing. Were devastated when we were told we'd be waiting months to transfer to new consultant. Then had a call out of the blue from our consultant on Easter Sunday and told good news and to scrap IUI as now at top of IVF list! Appointment folowed and told my BMI had crept up so to get it back down and we'd be in. Managed that within four weeks and waited for appointment. Cutting a very long story short they had messed up again so further delay and was told yesterday that would be August possibly before appointment (and in meantime couldn't do IUI either because of change in BMI ruling). Husband contacted consultant today as I've been so upset and she's backteacked on everything and said because my BMI went up I now have to wait another YEAR from the date I got it back down to be eligible. Am so shocked. So close to giving up! Just wanted to know if anyone else has been pushed from pillar to post and given conflicting info constantly and, if so, what the hell do you do about it??! Terrified to complain officially in case it makes thibgs worse as no way can afford private


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## Sarapd (Dec 4, 2012)

Rounds - We were pushed from pillar to post constantly and the goal posts kept changing. We waited almost 3 years to get to the top of the list and even then it was only because I was about to turn 40 that we had our first cycle.  Make an official complaint - we did.  I am still incredibly angry with IVF Wales because if we'd known the waiting list was so long we'd have gone private years ago.  We found the admin side of things abolutely shocking but were happy with the medical care.  The new clinic in Neath is meant to be opening any time soon so that MIGHT help.
Good luck.
Sara. xx


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## Mrst83 (Apr 11, 2013)

I'm so upset with this place. We had a scan and they told me I had PCOS right ovary quite badly affected and I've worried about it for over a years visited my gp to ask her very kindly to do the tests required for us to try a cycle at crgw so we don't ave to any. Nothing was relayed back to our gp and when she received my scan there was no proper record of it just some notes and apparently I have no cysts on my ovaries... I'm just bewildered now


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## misskitten (Oct 31, 2010)

Hi Rounds, IVF Wales are so frustrating! We waited 2 1/2 years for nhs cycle 1, but I was referred to Bristol. I know they are still going to be referring some people to Bristol BCRM for the current financial year while the new Neath clinic is starting up. 

Have you tried approaching your AM? They should be able to write to the Health Board and Health Minister on your behalf and get responses quicker than you might if you did this yourself. May be worth a try. 

Good luck x


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## Mrst83 (Apr 11, 2013)

Hi I don't mean to sound so negative and squash anyone's hopes but we asked if we would be seen any quicker if we were willing to travel which we are we were told we would have that option until we were at the top of the list......not much point then


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## kara76 (Dec 14, 2004)

So sad to hear of troubles with the waiting list , this is exactly why I asked for people to speak to the media many months ago . The trouble is health boards have changed, the so called super clinic didn't open on time , funding was pulled way to early from lwc and the second cycle of ivf on the NHS went to this ladies nearing the age cut off point first all this meant waiting times were affected badly .

My advice is if you can afford to self fund 1 cycle while you wait , anymore than one and you affect your NHS cycles


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## Mrst83 (Apr 11, 2013)

Hi kara thanks for your words to us. We have now been told that have us put on the list from October 2012 which is at least a year later than it actually is, can't speak to anyone there. Rang 8 times Thursday and Friday as they said that's the only days the appointment lady works. So frustrating. We're hoping to egg share at crgw while we wait and my gp is being really helpful getting tests done for me as ivf Wales only done half of them. I feel so cross with them as they also told me after pelvic scan that I had polysystic ovaries but when my gp requested my notes on my behalf ( as they wanted to charge us fifty quid) the doctor said that I haven't. I've worried about it for months. Hey ho it's not just us I guess and crgw seems amazing xxx


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## Mrst83 (Apr 11, 2013)

Hi gals really don't know what to do now. I finally managed to speak to ivf Wales, ten calls all in all before someone answered. Well they say that I wasn't put on the waiting list from when we were referred which was oct 2011 but we were put on from October 2012 " that's how it's done" I was told. So we're actually a year down the list than we thought we were. Is this the way it's done? Do you usually wait for 12 months before they put you on the list? Grrr it's so frustrating coz there's nothing you can do. They hope they will have an appointment for me in may. This will be 3 years since we first went to our GP. God only knows how long our journey Is going to take if ivf Wales take this long to even start it.


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## Sarapd (Dec 4, 2012)

Hi Mrst83
As I understand it, you are put on the list and it is a minimum of 12 months after that.  Apparently this is because "many" couples conceive in this time, although by the time you get to be seen it's normally quite a while by then so unlikely to happen but that's just my opinion.  You need to keep onto them - that's what the consultant told me.  We went to our GP in June 2013 and we've just had our first cycle and that was only because I was turning 40.  We spoke to the manager of IVF Wales, Stephanie Herring and she was quite good.  We did put in 2 formal complaints but I don't think anything has changed as a result of them.  
We did receive good treatment from the medical staff but if you want to do something unproven, like steroids for immune problems, be prepared to argue your case.
We're waiting for our second cycle that the consultant told us not to delay with but in the next breath told us there was a waiting list of 9 months.  Not sure how much of a fight is left in me any more.......
Good luck!
Sara. xx


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## Mrst83 (Apr 11, 2013)

Aww Sara, thanks for your reply and your knowledge. Sad to hear your losing the will though. It's frustrating as its a hard thing to deal with and cope with anyway ( well I find it tough) but we really shouldn't have to battle with staff for info or fight for a right for treatment. I think that is what's hardest. I understand when they say wait as some people do get pregnant but we'd already been trying for years anyway so why delay any longer. The world is full of babies in the summer too or is it just nicer to push a pram in the summer I don't know but they seem to be everywhere. dH is great though but suffered a few of my meltdowns this week.we can't afford private treatment but we have been accepted to egg donor at crgw so hopefully we can get one cycle in there before my ivf appointment which will hopefully be may. Hoping we won't need it though xx thanks again Sara and stay strong.....as they say don't let the buggers get you down


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## misskitten (Oct 31, 2010)

Hello Ladies

Sarah, I remembered reading that you'd been told it might be a 9 month wait for second NHS Wales IVF cycle. Well today I actually managed to get through to IVF Wales on the phone and I was told that I will have a planning appointment in December or January and that is the waiting time for second cycles. Good job I called though as they need a 'second cycle form' filled in which obviously I had not received! 

So yes it is a 9 month wait for second cycles. The other thing is they said it will not necessarily be in Bristol even though I know they are continuing to use them this financial year. As far as i'm aware IVF Wales aren't in a position to be taking on patients anyway, and some staff are being transferred to the new Neath clinic.

Bit disappointed but what can you do?!


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## Mrst83 (Apr 11, 2013)

It's a little more than a bit disappointing when need icsi that's over 8 grand and can't afford it privately.  Been fobbed off for ages it's an absolute joke they can't even get it right if I have PCOS or not! I can't begin to tell you how upset angry and frustrated I am at this place. My GP referred me immediately after 2 sperm samples showed very low count, were not suddenly gonna get pregnant over night. Waiting 12 months just incase I do is again just fobbing me off for either not putting me on the list ( which did actually happen) in the first place or just for their incompetence, breaking my heart bit by bit along the way


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## smcwales (Apr 28, 2010)

If you do get a chance to be transferred to BCRM I would take it.  We went over last October and I am currently 27 weeks after my first attempt (ICSI)  The difference in the clinics is unreal.  Cardiff you feel like you are sat in the corridor waiting at BCRM it has it's own section the only people you see are there for IVF.  They make you feel right at home are very friendly and helpful.  

I feel all your frustration in the wait and I really hope you all get seen soon xx


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## misskitten (Oct 31, 2010)

congratulations smcwales, I completely agree. 

My experience at BCRM was really good. I felt they looked after me better than CRGW did. Don't know about other people's experiences but I felt in better hands at the NHS clinic compared to the private one - ultimately they are businesses out to make a profit, and I felt they were not so concerned about overstimulating me. CRGW also blamed my egg quality for my failed cycle, which really upset me at the time, but my eggs were good quality on my second cycle so I think they were just passing the buck! 
I hope I'm referred back to BCRM and if I did pay for another cycle I would go back there. 

Mrst83 - waiting and uncertainty about the future is the hardest part of all this and every person here will understand that. I hope you get answers soon x


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## misskitten (Oct 31, 2010)

There is no pleasure during any part of IF. The financial implications, effect on your relationship, feelings of jealousy and anger, waiting and having no control is all s%#*t!!!

The further along this path you go, the more painful it feels.

But who said life is fair? 

It has helped me having other women to connect with and to put my own situation in perspective, and to me this is a small positive.


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## Mrst83 (Apr 11, 2013)

Hi just a little note. I'm sorry if my ranting and raving the other day may have dragged anyone down.....I really am had a meltdown on hubby after gp appointment which they 'don't know' anything either! Thanks for your kind words all . It is nice to know your not alone xxx hope your all enjoying the sunshine ( and thunderstorms)


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## beckha (Feb 22, 2011)

kara76 said:


> So sad to hear of troubles with the waiting list , this is exactly why I asked for people to speak to the media many months ago . The trouble is health boards have changed, the so called super clinic didn't open on time , funding was pulled way to early from lwc and the second cycle of ivf on the NHS went to this ladies nearing the age cut off point first all this meant waiting times were affected badly .
> 
> My advice is if you can afford to self fund 1 cycle while you wait , anymore than one and you affect your NHS cycles


I thought you could self fund 2 cycles then still use your 2 NHS?


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## MissMayhem (Feb 24, 2013)

This is a very old thread for me to come back to now but just wondered about the NHS clinic in Bristol - would any of you know if you  can self-fund cycles with them? Know that you can't do it with IVF Wales. Am leaning towards CRGW for private, was a bit peed off that their 3 cycle package only saves you financially if it doesn't work 'til the last go as if you get pregnant sooner you just lose all your money as all cycles have to be used in a year. I know if you get that baby in your arms you can't measure that financially but it's still a big rip off if you end up, in effect, paying double for one treatment! Think most of the private clinics do the same though. Any update on Bristol would be fab, hope you're all doing well.xxx


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