2nd IVF Funding - Feedback please

[Sarahob]

Hiya Girls

Well I am totally annoyed (could think of several other words but think I might get moderated if I use them!!!)

I am in North Wales and have been trying on and off all day to find out an answer regarding the funding! Its been driving me crazy! Each person I speak to gives me a different department or person to speak to!

I know how much hard work you must have done Kara and please don't take this as an ear bashing to you! But my god if this funding was agreed last year and no one knows who is dealing with it several months later, it really is a joke! I work for the government and this just stinks of red tape.... takes months for changes to happen but they have had months! How come no one knows the department who should be answerable!

My final call today was to the Welsh assembly and they gave me details of the MP for Health and Social Funding, the lady I was talking to said I should put a complaint letter together and send that to her! Somebody somewhere knows what is happening and when!!!! At this rate we will all be over 40 before anything happens!!!

Sorry for the rant, its just so frustrating!!!!

[Sam76]

evening all

ratsy - well done on progress so far!
kara - thanks for all your help - make sure you're not overdoing things though! 
sarah - sorry you've had a frustrating day - unfortunately there's probably more of that to come if we're to get any answers.

i did try to phone this morning - a number on the WAG website - and line was completely dead

I'm happy to write to JE's boss too to express frustration and request information - whilst recongising that this is out of the hands of the clinical staff who are trying to move this along and keep us up to speed with developments as they occur. (DH reckons we need to pick our battles carefully and make sure we're going after the right people.)

i think we need to ask someone to explain who all the players are and how the process works between edwina hart agreeing funding and patients getting treatment - and who we should contact with queries and complaints. Since we know that Edwina Hart made the announcement, maybe we should start at the top  and write to her too asking her to comment? (on why things are taking so long, what (if anything) has actually happened since the funding was agreed and whether April was the date that they would start looking into how funding would be used - not actually starting to get patients treated as has been the suggestion)

....dinner burning so will have to nip out for a mo and pop back later....

xx

[SarahJaneH]

It is maddening reading this - the inconsistency of what people are being told, even from the same clinic, the lack of communication between clinics and hospital management and clearly nothing has been done in the 5 months since the announcement was made.

We had already decided to pay for 2 cycles before the announcement was made and forfeited our second free go with this tx as we are still on the waiting list for our first nhs go, but I very aware that we are really lucky to be in a position to do this. I really feel for everyone whose hopes have been raised during what is already a traumatic and emotional time. I'm happy to phone / write etc if it will help keep this issue in the minds of the powers that be and get something done. Sarah, were you given the Minister for Health's details? I wonder whether it is worth a single letter to her with a list of everyone's names who is willing to add theirs - what would be more effective, that or lots of individual letters? Kara, any ideas? The page below is about writing to ministers at the assembly, it seems sometimes civil servants reply on behalf of ministers, but organisers of campaigns should get a letter from the minister.

http://wales.gov.uk/about/cabinet/writingtowelshministers/?lang=en

Sam, just read your post while about to post, I agree, a letter asking Edwina Hart for comment on the ensuing confusion might just get her to press the right buttons lower down the chain. I know health is a devolved issue in Wales, but surely they won't want bad publicity around the general election as it will reflect badly on the party, whether it relates to westminster or not.

Good luck ladies, will do whatever I can to help  



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[ratsy]

Hi sam

Yes i agree with your dh ,We need to write to edwina aswel

Im not sure of the address for her tho now its welsh assembly but that it

I think its awful getting peoples hopes up and then nothing , i dont think they realise this is our hopes and dreams in there hands its cruel and very stressful  

Dp got me thinking he reckons we wont even here anything till after the election he thinks it will depend on that it does seem odd that nobody knows who is dealing with things everybody passing the  buck its like there holding back

Rxx

[kara76]

i should get info from edwina i would have thought! keep writing girls

[Sarahob]

I've got the address of the Health Minister, I'll put the details on here in a bit!
Only thing is the lady who gave it me said it was to register a complaint over the way we can't get an answer to a very simple question! So whether it will do any good remains to be seen! But hell, I just feel like complaining now so will write anyway!
I just can't get my head around the fact the funding was agreed months ago, so why is there not a department been set up to deal with it! Or if there is, why is it so difficult to find them or speak to them!!!! Doesn't make any sense!
xx

[kara76]

totally agree its not really on

when edwina announced the funding she did mention that provisions would need to be made for the extra cycles but i still cant understand why clinics are not pushing forward with the second cycle.

i am in touch wth someone who sits on the all wales fertility group which no doubt will be part of this so i hope to hear something soon but like with anything this is gona take time!

[Sarahob]

Thanks for your continuing support and fighting Kara, we do all appreciate it! Must be so frustratimg for you coming on here and reading our "rants" after all your hard work!

One day, hopefully sooner rather than later, we'll be thanking you with news of our own little bundles of joy arriving !!!

[Jule]

Hi everyone just been reading back, another thought why dont you all contact your local am's aswell.  I done that initially and they wroteto Edwina Hart for me.  Just a thoght as it may be worth getting other people on board and my am is who initially got the ball rolling with the petition.

[kara76]

i just want you girls to get your treatment that we all fighted so hard to get. when i get any news i will post it up

another way to get your voices heard is the media, not ideal as i know plenty of you wouldnt want that but it could be an option!