# 2nd IVF Funding - Feedback please



## julespenfold

Hi All

I thought I would start this thread as there seems to be a lot of different things coming out of the clinic re what is happening and it may be easier for us to post in one place.

I last spoke to the Clinic back on the 16th March and was told that nothing had been settled yet as to when they would start doing planning appointments. They did confirm that I meet the criteria and would be allowed a second go but they were not allowed to book me in for planning. They did say that the priority would be given to those nearer to 40 and poor responders, which I don't think I am but will know more at follow up.

They have said they may be able to do my planning appointment when I have my follow up on 13th April but couldn't make any promises.

I understand from other posts that there is a questionaire being sent out, but this doesn't seem to be for everyone and that they had a meeting on 22nd march but nothing appears to have been resolved. I believe that they have now said they should know more at the beginning of April.

If anyone has heard anything else please post 

Thanx jules


----------



## kara76

good idea jules and i hope that come 1st april everything will be sorted

i am quite prepare to send an email to my contacts within the welsh assembly if funding is not granted on the 1st april


----------



## julespenfold

Thanks Kara, hopefully they will have it sorted soon x


----------



## Shellebell

I have changed the title and made it sticky for you


----------



## ratsy

Hi  Jules 

My DP  phoned this week  and the clinic said they will be sending out the questionaire in the next couple of weeks ,And no planning appointment can be made untill there back in ,And youve got to send them back asap 

They also said the same that its people near to 40 and peole with low egg reserve that will be seen first and they should all be seen by December 

Im 39 in july so im worried that i wont  get seen this yr i havnt got alot of time left  

Good idea about this thread its so frustrating waiting  for news and we can all help each other, As i was told by another ff that the questionaire was being sent out to her in the next couple of days when dp phoned it was next couple of weeks so dont really know what to think  there telling us all different things  

We will have to get kara to kick   she wont take no messing    

R xx


----------



## Sarahob

Hiya Ladies

what a great thread! I've had my first tx at Liverpool Womens Hospital, resulted in a BFN at the beginning of March... I have a follow up appointment on 14th April... 
We have unexplained infertility, well thats what we have been told all the way so far, whether that changes on the follow up we'll just have to wait and see!

I was really hoping to be told at the fu that we were entitled to a 2nd NHS attempt, I think we qualify! Am just wondering from your comments if it would be worth phoning the clinic to see about this questionnaire! Am desperate to start tx again like everyone else!

Any thoughts?
xx


----------



## jk1

Hi everyone - good idea this thread Jules!!

My husband was told on Tuesday that they would send the questionnaire out to us within the next couple of days but nothing has turned up yet - going to ring again tomrrow and will probably just keep trying until we get one!!

It does appear that people are being told differnt information - but like you say Kara, it may be that they are just waiting for April to finalise things.

Jo xx


----------



## Sam76

Just to let you know that I have a follow-up appointment on Tuesday following first failed ivf cycle in Feb. Will be asking what happens next so will let you know what I find out... (pity appointment wasn't 1st april as i have a feeling things will still be in limbo on tuesday)

xx


----------



## ratsy

Sam 

Ive got an appointment april 1st so il let you know if i find out anything 

R xx


----------



## julespenfold

Hi Guys

Thanks for making it sticky Shelly.

Sarah, I would probably give the clinic a ring they may be able to tell you over the phone if you qualify and if you need to go on any lists for questionnaires etc.

Ratsy I know what you mean about the possible wait of over a year I think I will go doolally. I'm only 35 (36 Sept) so technically got a few good years but if they say its a year may see if I can do a self fund inbetween as haven't self funded yet.

Jo - let us nkow what they say re the questionnaire maybe they are holding of until April?

Sam & Ratsy good luck with your fu this week hoepfully they will give you both definate answers.

Jules xx


----------



## PixTrix

great thread Jules.

Well I rang today to cancel my planning appointment that I had booked for august because not likey to have had op befor then and asked how they were dealing with the second NHS and he said will be doing those approaching 40 first which I think is very fair and then asked how are they dealing with the rest of it and he said questionaires woud be sent out. I asked if they were going to everyone and he said um yeah at a request do I want one? Well yes please. How is everyone that doesn't read here and don't ring up supposed to know this? Anyway will eagerly await the questionaire fill it in and get back asap!

I have got to say I do sympathise with them at the clinic, can't be easy


----------



## josiejo

Looks like I am going to have to call again then to get one of these famous questionaires as the lovely nurse I spoke to didn't know anything about them nor did the other nurse who I am sure she said was Debs. 
I will wait until after the Easter break and hopefully they will know a little bit more by then.
Hopefully I will get a lottery win then we won't have to worry about the funding lol


----------



## jk1

Hi all,

I got my questionnaire today so didn't need to call after all!!

Its only one side of A4 and just asked all the normal questions about me and DH (height, weight, BMI, if you are a smoker etc).

Sounds like they are on their way!!

Jo xx


----------



## Queenie1

thanks for the info 

think i will phone tomorrow for one  as well


----------



## julespenfold

My understanding was that the questionnaires were to establish if you meet the criteria? do you think I need to ring to get one as I have already been told I meet the criteria or just wait until the fu and do one then nec?


----------



## jk1

I don't know - it might be worth getting them to send you one and filling it in anyway - it can't do any harm


----------



## kara76

ladies now is your chance to speak out about how very important this second cycle of funding is to you

i have had ITV on the phone this morning and they want to talk to ladies/couples that will benefit from the second cycle of IVF.

so if your interested i need your full name and contact telephone number and i will pass it along to the lady is question who will then contact you. 

i understand not everyone will want to speak out for lots of reason, family etc etc but i really hope someone will.

this will be done tomorrow/thursday.


----------



## Sarahob

Oh my goodness Kara! That's huge! I will have to check with my DP but as he hasn't even told his family about our tx I don't think he would agree to it. Am so sorry not to be more supportive, I can see how much work you have done on this... I'm trying to contact my clinic today to ask if they know if I will qualify for 2nd free tx or about the elusive "questionnaire".. will let you know what they say!


----------



## kara76

ok thanks sarah. your clinic might be dealing with the funding a different way and might not be doing the questionaire!


----------



## angharad71

Hi Ladies,

Good luck with this. Health Commission Wales make the funding decisions and they were the ones who agreed to me being fast tracked down the NHS route. Perhaps if people are having difficulty in accessing timely treatment they could consider writing to them.

A x


----------



## julespenfold

Hi Guys

Unfortunately DP does not want the fact we are going through IVF to be general knowledge. If they will keep it anonymous I am more than happy to talk to them

Jules x


----------



## kara76

ok hun, i think thats the case for many

i am passing on the details of one brave FF to ITV wales...will let the lady in question say who she is once she has spoken to ITV!


----------



## Sarahob

Hiya Ladies

Phoned Liverpool Womens Hospital this pm where I had my first unsuccessful tx. Asked them about the funding and they said it was nothing to do with them, they only do the tx. She was nice about it tho! She suggested ringing my GP or Primary Care Trust.

I phoned the GP and have to phone back again tomorrow to speak to the Secretary... 

I phoned the PCT who asked me to phone again tomorrow morning as the lady who dealt with funding had finished for the day. The lady I did speak to suggested I also phone the Health Commission (I think Angharad suggested this earlier!) No joy from them tho, just an answer phone message saying they are away until 6th April!

Urgh! Its crazy... why can't we get answers!!!!
So annoying!

xx


----------



## kara76

maybe the media will be able to shed some light on things come thursday!

the funding i assume will come through health commission wales as wales is treated as a whole so PCT would probably not have that information. if clinics havent recieved the funding then they are stuck and i would imagine they will wait for this before deciding on how to manage lists etc etc. IVF wales may well have the upper hand in this because i have kept them informed throughout and they will there when the extra funding was announced, shame other clinic didnt show an interest!


----------



## Sarahob

Its annoying isn't it! Part of me wishes they hadn't announced the prospect of 2nd tx funding until it was sorted! But then how many of us would've started paying out of our savings if we didnt know! If the 2nd free cycle doesn't work, that may well happen anyway!

If I can do anything annonomously Kara then I gladly will!

xx


----------



## kara76

oh sarah the second cycle being announced has saved many people thousand and i know it must be very very frustating waiting while its all sorted out and wanting and waiting really isnt easy, i remember waiting for ops and that is when this campaign started as i needed something to sink my teeth into even though i knew i would never get any further funding. 

of course there is still the option to self fund if you cant wait, i personally would save your money and wait.

i might seem to take all this my my stride but i also find the media attention stressful and get very nervous and did consider not speaking to them this time due to my situation and stress not being a good thing! but i felt it was something i have to carry through to the end and no doubt i will be stressing all night now about what they are gona ask, what im gona say etc etc, why am i saying this well to make everyone realise that the funding is down to very hard work, personal expensive and stressful situation both for me and julia. i cycled while campaigning how mad an i, i had cycles abandoned while campaigning again how mad am i ! im mad because i know the hardship of remortgaging, using credit cards and going without things and if one baby is born from this extra funding its all worth it, its just a shame its causing you ladies who are personal friends and FF stress which i hope will be eased soon

try and think of it like this

stress plus waiting for £3500 to £5000 of treatment! frustating yeah worth it i hope so, just think how long it would take to save that amount of money!


----------



## kara76

ps sorry for waffling lol


----------



## Queenie1

hi all

kara so sorry i was unable to help but as jules has said dh likes to keep it private. i hope someone is able to go and give their view. please don't get stressed about it all as baby ellard and you are so important to stay healthy.

i phoned clinic reception today and i asked for a questionarie and they are putting one in the post to me. not sure if i need one but thought it is worth filling one in just in case i do.


----------



## kara76

deffo fill one in queenie

i know for some/most ladies speaking out is not an option and lets me honest this is the case for 99% i think. i posted this on 2 forums and ******** and have 2 protential ladies just shows doesnt it.


----------



## Queenie1

thats great that you have 2 ladies willing to do it.

ivf is a difficult thing as i think most women are not too worried about speaking out about having tx but i think it is the men that find it hard.


----------



## kara76

oh i agree, i think men find it very hard to speak about and this is even more so if there is male factor involved. i have been very lucky with luke yet i didnt tell him he would have to talk on tv that time lol. its very much a shame really cause i know that when men do meet another man who has been through treatment they too have that instant bond we all have.


----------



## Sarahob

its actually qute interesting how many ladies read threads such as this, and the other thread ara has posted on, also the ** site and only have 2 brave ladies are willing or able to speak out!

Just goes to show doesn' it... my reasons are that DP doesn't want many people knowing about our tx, because they wouldd just heap more stress of us by continually asking how "its" going! I know what he means, although people do care the comments they make sometimes sound patronising... I honestly think you have to go thru this turmoil to truly understand how emotional a journey it is! Comments from people who have conceived naturally about "oh it will happen soon" really upset me! 

Am stopping now before I really start ranting!
xx


----------



## kara76

i decided very early on to be open about our infertility and yeah i had some very hurtful comments over the years and also some very good support. for me i found i have educated alot of people to how heart breaking infertility is. talking about our issue is not for everyone thats for sure.

i think the campaign proved very very much that people speaking out does change things and im proud of myself for being part of it and i will continue to speak out for the sake of all your ladies and couples that can not speak....probably because im a little crazy lol


----------



## Wrighty

Sarahob said:


> Hiya Ladies
> 
> Phoned Liverpool Womens Hospital this pm where I had my first unsuccessful tx. Asked them about the funding and they said it was nothing to do with them, they only do the tx. She was nice about it tho! She suggested ringing my GP or Primary Care Trust.
> 
> I phoned the GP and have to phone back again tomorrow to speak to the Secretary...
> 
> I phoned the PCT who asked me to phone again tomorrow morning as the lady who dealt with funding had finished for the day. The lady I did speak to suggested I also phone the Health Commission (I think Angharad suggested this earlier!) No joy from them tho, just an answer phone message saying they are away until 6th April!
> 
> Urgh! Its crazy... why can't we get answers!!!!
> So annoying!
> 
> xx


hi

im with lwh and phoned them last week. i asked to be put through to some1 who can talk to me about the new funding i was put through to a nice lady but for the life of me cant remember her name. she took down my details and patient number. i asked if i would need to see my GP and she told me i didn't have to and that the hospital will contact me about it. they were just waiting for the info off the welsh assembly before they start contacting any1.

weird how they tell people different things i would phone them again and ask to talk to some1 there about it.

anita xx


----------



## ratsy

Hi girls 

Phoned clinic today for questionaire and there sending it out today  

Julespenfold -Id definatly phone and ask for questionaire because when dp phoned they said there will be 2 waiting list as such one for the older ladies first , as still got have list for that aswel to see who goes first .And then the other list for younger ladies 

Dp was asked how old i was he said 39 and was told i was near top of list due to age and id have to fill in the questionaire and send it back asap 

As NO planning appointments wil be booked until this form filled in , might have changed since so thats not a def but im being sent one i think it dosnt hurt to fill it in and send it off 

R xx


----------



## Sam76

Hi Ladies,

Here's an update following the follow-up appointment I had this afternoon....

with regard to the questionnaire - was told that they haven't been copied and will be sent out in the post when they are ready - tried to get one there and then but was told there weren't any to have (I guess there's no particular rush for me but will be ringing them this time next week if i haven't received one)

with regard to funding, the clinic still don't know. my understanding is that they haven't been given details of how much they are going to get and when they get that info they will need more staff and more space to be able to increase their capacity - although i'd imagine that they would start doing second cycle tx with current staff/space when they know just how much money they'll get. i sympathise with the clinc but at them same time know how frustrating this is as a patient. i think it's important to try to keep in mind that thanks to kara's hard work the funding has been agreed - now it's down to wag, health commission wales and the hospital management team (not really the clinic) to sort things out and hopefully speed things up so that patients start seeing the benefit. sorry that probably doesn't help much for all those waiting...

I'm about to start a 3-6 month stint on gonapeptyl to suppress endometriosis so for me I'll be waiting to see what pans out with the funding and whether anything's likely to be available in that timescale. 

(ps - i've agreed to be contacted by itv wales if timing can be fitted around work commitments, very lucky that DH has agreed and supports me. I just feel that it's important to raise the profile and make people out there aware of the issues surrounding fert tx. Knowing that Kara has worked so hard without getting any benefit (other than what must be a very warm glow from helping others) didn't feel that being nervous was a good enough excuse not to!) thanks kara - we all think you're a star xxx

Sam x


----------



## kara76

sam thank you for agreeing to be contacted and i will pass your details over tomorrow. 

as said on the other thread many of us worked on the campaign collected sigs and cheers to all the girls, you all did an amazing job be proud of yourselves, it sure does give me a warm glow....great team work

i hope clinic sort it all soon and i think more resources will be needed asap lets hope they find people to employ


----------



## Sarahob

Sam very well said, I know I joined this thread quite late and didn't actually realise how much Kara had done to get the funding agreed... Well done for supporting the ITV interview, unfortunately my DP wants to keep our tx as quiet as possible so I have to respect his opinion xx But go for it girl xx

Thank you so much Kara, we do all appreciate all that you have done! xx

Wrightywales - cant believe we've been told different things! They said to contact my GP and the PCT! I'm gonna phone docs tomorrow to see what they say!

xx


----------



## kara76

i would love to take all the credit but it really wasnt just me i was just the wheel that turnt it and spent hours and hours emailing people etc etc. jule did so much work too as did many of the girls who collected sigs

big up to all you ladies


----------



## jk1

Kara - don't stress, you are fab and we all think that.... my work don't know that i've already been through two cycles so it would be difficult to speak to ITV as i've kept it quiet for the same reasons Jules said - its so difficult and even more difficult when people ask you how 'its' going.

Sam - well done for agreeing to speak to them - its a hard decision to make as its something we are all so emotionally involved with and therefore you want to do all you can but then on the other hand its so personal too.

You are both stars!!

Sam - we got our questionnaire yesterday and sent it back today so it's a little strange they told you they weren't ready yet...just wish they would be honest with everyone and not give people different messages.

jo xx


----------



## miriam7

really hope you all know where you stand soon ladies   sam good on you for volountering to speak to itv ...hope other people will help out to kara


----------



## Ravan

good luck today Kara and Sam


----------



## kara76

thanks hun

they are coming between noon and 1pm. sam i hope to past your details on later, tania is out of her office so i assume she is coming to me!


----------



## kara76

it went really well, i think lol. just spoke from the heart as i always do

its on tonight at 6pm ITV


----------



## Queenie1

well done kara i'm sure you were great. thank you for doing it on our behalf. have got it sky+

well i phoned yesterday for questionaire and it has arrived to day in the post. so gonna fill in it tonight and send it back. sam i would phone the clinic's reception and ask for one.


----------



## kara76

queenie you are more than welcome, i am just so over the moon this is gona help ladies i know aswel as all those couples i dont.

great news you have your questionaire


----------



## ratsy

Well done kara your a star you never let us down    Ive got ITV on ready you will be brilliant as always 

Girls i phoned for my questionaire yesterday and it came today  

R xx


----------



## Queenie1

ooh not long to go kara.


----------



## kara76

im nervous now, hope its all ok


----------



## Queenie1

you will be great your a natural


----------



## ratsy

Im excited to watch it xx


----------



## Queenie1

kara you were fab. you looked great and your nursery looks gorgeous.

well done


----------



## kara76

i just cried through it all ! its such amazing news isnt it


----------



## ratsy

Kara you were brilliant i dont know how you do it i would have been so scared  

The nursery looks fab  

I will be seeing janet tommorow ive got an appointment with her 

Thanks again  

R x


----------



## Queenie1

yes it was very emotional to watch. will be lovely for you to keep to show baby ellard when he/she is older.

it is amazing to believe that what you and everyone did has changed the lives of all in wales.


----------



## kara76

just goes to show what team work can do. be proud ladies we did it YAY YAY


----------



## Wrighty

i dont get itv wales do u think they will put it on the website?


----------



## kara76

they might put it online later, will keep an eye out


----------



## Wrighty

i will too they got yesterdays on so its just waiting for them to put todays on


----------



## Queenie1

just watching again.

can i ask why did they show babies in icu


----------



## Sam76

well - i was interviewed (they came to work to do it) but looks like they didn't get the footage back in time - interview wasn't until 4 (either timing issue or i was crap  
The lead reporter didn't come so think they might have used me as an opportunity for the 'new girl' - who was very nice - to have a go at an interview on her own (she said it was her first one).

The experience definitely wasn't anywhere near as bad as I thought though so would certainly consider doing something again. 

xx

Kara - nursery (and you) look fab xx


----------



## Sam76

...thanks for the info about the questionnaires girls - a bit crossthat I was told yesterday that I couldn't take a questionnaire there and then as there weren't any ready... will have to give them a ring


----------



## Sarahob

Just watched the news on line at the itc wales site.... was very good interview...

well done Kara you did brilliantly!

By the way the nursery looked fab!
xxx


----------



## ebonie

Kara you was wonderful in the interview hun u looked fab you bump looked like it have changed shape since last week hun xx
Your nursery is looking fab hun so exciting for you . I got emotional watching it xxx

Sam i hope your interview will make the news hun


----------



## Queenie1

sam well done on doing the interview. i hope they show it.


----------



## jk1

Kara - you were fab and you and the nursery look amazing!!! well done you!! xxxx


----------



## kara76

not a clue queenie seem a little odd to me

sam im sure you were great and i know they were limited on time when they came to me , was the lady tania? dark hair? sam good for you agreeing to speak out, it takes guts

sarah,ebonie  and jo thanks ladies


----------



## Wrighty

just watched it omg so nice to put a face to the name kara

you did brilliantly and your nursery is gorgeous

sam ur so brave for talking to them i hope they show it

here's the link for any1 that didn't see it

http://www.itv.com/wales/fertility-boost30688/

/links


----------



## kara76

great link hun


----------



## Sam76

hi kara - yes it was tania  x


----------



## kara76

aww she is lovely isnt she...the male reporter was very handsome lol


----------



## jk1

well done Sam, did they say when it would be on? i'll be watching the one at 10pm tonight too!! xx


----------



## Sam76

yes she was lovely - the male presenter was back at hq putting the piece together so didn't get to see him - that would probably have made me more nervous!

I think my 5 minutes of fame will probably have to wait for another occasion! They did say that it might be included in the regional news pieces on gmtv tomorrow morning but i'll be in work so won't know. I can't really remember much about what i said and think i did waffle on a bit! at the end i remember thinking that i wouldn't have said some things and should have said others but it was all done in one go and didn't get to redo any bits! ... all a bit of a blur really. If there's anyone thinking of doing something like that in the future i'd say go for it. I get really nervous - shaky voice and hands but this wasn't too bad. Haha if it does end up on the box I'll probably have to eat my words (and will be haunted by my lank hair  ) Didn't think this morning when I got ready for work that I'd have been interviewed before the end of the day - or def would have made more effort!).

xx


----------



## jk1

Cool - i'll look out for it tomorrow morning - always have GMTV on before i go to work!!

Its all so exciting - feels like things are starting to happen now!!....hooray - this time next year we could all be mummys (or at least pregnant!) - optimistic i know but i'm tired of feeling down about it all!!

onwards and upwards, fingers crossed for us all!!

Jo xx


----------



## SarahJaneH

Thanks for posting the link wrighty, just watched it you were fab Kara and the nursery looks great. Well done you Sam on being interviewed, I'm sure you were great and hope they show you after your efforts. 

Hope things will start to move for all ladies waiting for news


----------



## kara76

what time is the news shown on gmtv?

on sam you have done it now, if ever i get asked if i know someone who will talk i will be getting in touch lol, im glad you didnt find it too scary,its just like a chat isnt it

jo its all very exciting

thanks to you all on your lovely comment re nursery


----------



## jk1

yay yay yay i just watched it again on news at ten!!

i think th welsh news is normally on just before 7am ish


----------



## kristgaz

Thanks Kara and all you other lovely ladies involved in bringing us all in Wales 1 step nearer to our dreams.Just watched the news and you did an absolutley wonderful interview Kara.
Hopefully it won't be long now to when we hear when it all begins,I think my hubby is sick of me asking when he comes to pick me up from work if we have any mail from Liverpool.xx


----------



## Taffy Girl

Great interview Kara - thanks for letting me know!  Your nursery is looking fab 
I had leaky eyes watching it and cuddling Morgan, thinking about how lucky we are. Morgan was the result of our second ICSI cycle and I truly hope that many, many other couples - especially all of the lovely ladies on here - will benefit from this extra funded cycle.


----------



## kara76

you wana sort those leaky eyes out lol

sam i spoke to tania today and she said they ran out of time which is a shame


----------



## PixTrix

Great as usual Kara, thanks 

So sorry they didn't show you Sam. I'm sure you will come in very handy another time


----------



## ratsy

Hi girls 

Had my appointment with JE  today wasnt good news really  

She dosnt even know when they they will be starting basically they need new staff new premises and the nearly 40 first and people with low egg reserve and they will be going back 6 yrs , So people could be phoning up who had tx 5 yrs ago and couldnt afford anymore and now nearly 40 and be before me 

I thought being 39 july i would be one of them but it dosnt look like ,Think  im in queue as same as everybody i dont think im classed as nearly 40 

So were paying private for next go as i havnt got time to wait  im an oldie  

I wish you all well on your fertility journey and hope you all get your longed for bfps 

Love n luck 

Ratsy   xxx


----------



## Beanieb

Just watched this - Marvelous. Too late for me (it's my 40th Birthday on 4th April) but I know one person for whom this will be fantastic news as well as several people on here.


----------



## Jule

oh thats really disappointing ratsy. I would have thought you would have been one of the priorities also a bit of a worry if all that needs sorting first.  I was under the impression the new unit is finished, is that not right?


----------



## ratsy

I think they want knew premises she said they havnt got any they see 279 patients a yr and there will be loads more they havnt got room in this clinic she didnt even mention the new unit she just said premises so im not sure what happening and she said they will need new staff aswel they havnt had them yet 

First off we were going to wait a month but dp said he doubts it will be even sorted by then i really believe JE  really didnt know herself , she just said i really dont know when  

R xx


----------



## Jule

oh no that is such a shame i really thought after all that hard work it really would all fall into place for everyone, that is so disapointing for you   lets hope it is not as long as you think


----------



## Sam76

Ratsy - i got exactly same impression on Tuesday...

unfortunately, i can't see how it can be resolved quickly - with currently staffing and space, there's only so much they can do  hopefully they'll be able to give us an update soon so that at least people know where they stand. I don't think it's the clinic that's holding things up - i think that things need to be agreed by hospital management - don't think the restructuring has helped either!

here's hoping we get some news soon... and that it's good news xx


----------



## Jule

no im sure its not the clinic, its money for them so its their gain but if other things are in the way its difficult,not easy for you guys though


----------



## ratsy

Jule / sam 

Yes i agree its not clinic soon as i sat down JE  said i see you can have the 2nd funding so she was keen to tell me this 

But as i said in post im 39 in july ooh i hate saying that   . It could take mths to organise which i can fully understand dp said youve got to be realistic they cant just recieve funding and then right were ready to go he said the staff will have to be trained and new premises sorted with scan machines and so on 

So i dont want to be nearly 40 before i have another go ive got to be realistic and try this summer 

R xx


----------



## ANDI68

Sorry to butt in here ladies, reading your concerns about the clinic not coping and some ladies missing out on their deserved treatment.  Would you consider a different clinic in Wales that can accommodate you before your time runs out ... is that an option?


----------



## kara76

reading this makes me a little cross after all the hard work that was put in by us. no doubt its all down to red trap but they have know the funding was coming in and i personally think that if thr funds are there that they should start treating people asap, why wait for the list to build up!! can you imagine stopping treatment 6 years ago and coming to terms with it, would you really want to start it again!! i would think only a small fraction would cause i dont think its something you would stop without lots of heartache and if you stopped because of money would you have looked into other options!!just a thought

andi i know the LWC and liverpool seems to be having the same problems dealing with the waiting list for the second cycle

ladies the health commission wales have a all fertility group that meet and discuss funding issues and this is probably all decided at these meetings, im not sure if its worth everyone who is waiting for the second cycle to write to the HCW, you never know it could change something!

ratsy im sorry that you cant wait but i think your doing the right thing self funding due to your immune testing, if you could wait i would say to but with a 6 month window you are doing the right thing for you


----------



## Sarahob

Hiya Everyone

Kara it must be immensly frustrating for you reading all our comments about trying to get the 2nd funding agreed for our next cycles!

I was on the phone again yesterday to my GP, phoned the HCW and was told to phone back on Tuesday because the lady I had to speak to was off for Easter! 

Will let you know how I get on!

In the meantime Happy Good Friday

xx


----------



## kara76

i just feel for your girls that are left dangling and waiting

sarah let us know if you get any news

happy easter to you all too


----------



## Wrighty

im not expecting to hear anything for a while as im only 29 but hope you ladies close to max age hear something very very soon

Happy Easter every1 hope you all have a lovely weekend xx


----------



## ratsy

Thanks kara  

JE handing me a questionaire when i went in she was shocked that i already had one 

Yes my immune tests run out in 6 mths so i need to sort it now really ,dp was led to believe we  was 4th on list on a recent phone call  but obviously not now as was told yeterday were same as everybody else   were gutted 

But hey ho its not to  be il def write to HCW does anyone have there address if so can you pm me it  please , I doubt it will help me it might help get things moving if we all write 

Have a lovely easter girls    

R   xxx


----------



## kara76

http://wales.gov.uk/topics/health/hcw/news/notice/;jsessionid=DS14L1sFrVZvSlqTgVNXGGGSCMK6mzCnF1klnsFyQ326TC4z9z1T!1135659162?lang=en

seems there is no longer a health commission wales!!!!!! but this has an address.


----------



## ratsy

Thanks kara 

Girls we all need to do our bit that link has a phone number i shall definatly be phoning tuesday morning first thing  

Kara and jules have done there fair share and got us this funding which we NEVER EVER would have had without them and there hard work ,Its our turn now ,If alot of people ring they might get the message and start getting things moving   

We cant just wait around  doing nothing we could be waiting months  just to even get started ,If we dont get on there backs they will think oh theres no rush people havent  complained that there waiting, And it will  also feel like were doing something to help   


R   xx


----------



## Wrighty

i will ring 1st thing tuesday aswell but i am rubbish on the phone i stutter loads and then dont know what to say but will do it for all of us xx


----------



## ratsy

YAY wrightywales 

Were coming out fighting now girls (no messing ) 

Im ok on phone I just  think they cant see me so say anything   

R x


----------



## kara76

thats the way girls. if you fancy doing a demo i could get media involved lol


----------



## Wrighty

the stuttering is just nerves. i get nervous talking to any1 i don't know face to face or on the phone but im sure ill be ok lol will have to write down what i going to say. hope more ladies do they same

come on girls we all need to phone them. 

xx


----------



## PixTrix

well done ladies I shall be ringing too


----------



## ratsy

They wont be happy us all phoning   

But something weve got to do if we leave it to them we will be grey by time they set it up . well i already am (a bit )  

R xx


----------



## Wrighty

they do seem to need a kick up the bum and we cant physically  do that so this is the next best thing i think lol


----------



## Queenie1

thanks for the link will phone when i get home from hols.

i hope they sort things out as i hope once i have had lap that i  will be able to do tx as i think there is a window of 6months to do tx in after one ( is this correct ladies)

in one way glad i did not go privately with lap now as it looks like i would have not been able to have tx straight after any way.


----------



## Jule

great you guys must all stick together and the more people that ring and complain and write and everything else the better  .  I had a lot of contact with HCW before xmas because of my funding.  I have an email address and telephone number of who i contacted and maybe if they are not right they can point you in the right direction.  [email protected], tel no 02920927640. 
Good luck and I hope you all complaining moves things forward for you all.  Make sure you have everything in writing as well just in case you need it.  As kara said this is not new info for the clinic and therefore the funding should be agreed for the new staff etc.


----------



## kara76

i am so made up you girls are gona all stick together and get fighting, this is how things change, its hard work and stressful but worth it


----------



## miriam7

i thought they would have sonme sort of plan in place by now ..hope you all kick butt and get some answers soon


----------



## Sam76

I'll be calling tomorrow too. I reckon we should ask for the correct address for correspondence too and all send a letter - doesn't have to be a long one but something that poses some questions, makes them take notice and reinforces our point!
XX

lets go-girls -wooo wooo!


----------



## kara76

yeah you go girls


----------



## Laura36

I'll call tomorrow too if I manage to get some time alone in the office.  Otherwise will call Wednesday.

Just so I'm really clear what to say, am I asking when the 2nd cycle will be commencing because clinic have no extra staff etc?


----------



## ratsy

Hi laura 

Yes thats right thats what we want to know as weve been told they have no new staff and no premises and they have no idea at ivf wales when they are even going to start booking people in 

I will post tomo ive got the day off so i will be ringing first thing and will let you know what they say 

Goodluck girls let the battle commence   

R   xxx


----------



## ratsy

Hi girls 

I had no joy at hcw ,The lady who deals with it not in so ive phoned the welsh assembley instead   

I spoke to a lady there and she is going to ask what is going on and get back to me today 

So il let you know what she says 

R xx


----------



## kara76

ratsy i hope the lady gets back to you, do you know who she is?


----------



## ratsy

Hi kara her name was beverley do you know her ?? 

If i dont hear by 2ish i will ring again i have her direct number .

Im like you kara i dont give up easy   

R xx


----------



## kara76

no i dont think i do hun

yeah deffo dont give up, thats the best way


----------



## ratsy

Hi kara 

Just spoke to beverly she said they will be phoning me back as she spoke to another lady in charge and they have to speak to the director of the health board and will be phoning me to let me know what going on 

Shes also given me the number for the local health board for complaints which i will be phoning as im not happy as you said theyve had since november to sort this out they new the funding was coming april 1st 

Just rang the number and it was for the university hospital of wales soon as i said my name she said weve had the welsh assembly on the phone this morning raising your concerns and somebody will be phoning you back 

Good ole beverly   

I will keep you updated if i hear anything today  

R xxx


----------



## kara76

ratsy good for you girlie, well proud of you. keep up the good work. i am sure clinic must be very frustrated too


----------



## ratsy

Girls we need to write to this lady as she is the director of ivf wales 

Jayne herve 

Assistant clinical director 

Head of midwifery obs / gynaecology 

University hospital of wales 

Heath park 

Cardiff 

cf14 4xw

This woman is JE boss If we all write and complain they will have to start looking into it they still havnt recieved the funding  spoke to clinic just now and nurse said, JE has been phoning hcw to see what happening and dont sem to be getting anywhere it looks like i definatly wont be having my nhs go as was told they just about manage with the space they have now it will be 70% extra on top of what they have now so they will definatly need new premises and staff i said to the nurse that the nurses will have to be trained and by time they find and get new premises and sort it all out ,And nurse said exactly she said its not the clinic holding back ,Which i said all the girls know that but its not fair on us we were all expecting for it to be all set up and started by now , I only have a 6mth window to work with so it will be too late for me she said wait a couple of weeks and see if anything happens if not i will be booking private , I think it will be months girls before they even start looking at getting started ,There just dont seem to be any rush   

So lets all get writting to this woman and hope with all our letters she will have something to show the directors and healthy board 

R x


----------



## kara76

i think the time has come for me to email one of my contracts within the welsh assembly. it could take a while to get a reply though


----------



## ratsy

Good idea kara this is just so out of order  

I cant believe they havnt recieved the funding it will be months before this is sorted out 

I will be writting to jayne tonight 

Lets see what reply i get 

R xx


----------



## kara76

totally agree this is bang out of order no wonder the clinic cant do anything if the funding isnt there, if that is 100% true i think a demo down the senedd could be a good idea but this means media too!


----------



## ratsy

Yes i agree they wont want that esp with the election coming up  

And like you said no wonder the clinic cant do anything when i asked JE  she said i honestly dont know when it will be starting  

Thing is kara we dont want you stressing out over this youve got enough with baby due soon   

If you can e-mail your contact for us that would be great help and we will all have to get our heads together ,dont you be stressing 

R x


----------



## kara76

my contact is looking into it, i hope to have news at some point. its ok i dont mind sending a few emails, saves me doing housework and hey i want you all to experience what i am.....this fight will be won


----------



## ratsy

Thanks kara your a star  , Your always there fighting away with us  

we have all got to stick together its no point in handful of us writting weve all got to or we wont be taken seriously 

Im 99% certain i wont be having my go as the nurse asked when im 40 i said next july she said were looking to treat the nearly 40s first so im not one of them like i thought . so i doubt it wil be this yr for me 

But im still willing to write and help out  

R


----------



## kara76

its gona take a couple of days til i get a response as to what the hold up might be!

the thing is next july is in yet another financial year so really this funding needs to be released now as by then there might well be a different goverment in place!


----------



## ratsy

yes i agree with that 

The thing is aswel like you say if new goverment comes in the conservatives dont believe in nhs ivf ,And the general election has been announced this afternoon the 6th may  

So dont know what will happen then can they take it back kara if they get in  

R x


----------



## kara76

the conservatives in wales back IVF funding, the lady who support me is a conservite so i dont think we have any worries there

i have also emailed another contact on mine


----------



## ratsy

Oh thats good then  

Thanks kara we all really appreciate you e-mailing round 

R xx


----------



## kara76

your all more than welcome just hope i can find something out for you


----------



## 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 

/links


----------



## 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!


----------



## kara76

fill up her inbox ladies!

http://www.edwinahart.com/contact.htm

/links


----------



## ratsy

Kara ive sent it ive e-mailed you with what ive written tell me what you think  

R x


----------



## Sam76

There's been lots of suggestions and ideas about what we can do so thought I'd have a go at summarising them...

*What do we want to know?
*Edwina Hart announced on 17th November "women will have access to two free cycles of IVF from April" - what does this actually mean? As patients undergoing/awaiting fertility treatment we want to know when we will be able to have an appointment for a second funded cycle. The clinic is doing its best to provide updates as developments occur but they are not in a position to give information about when NHS funded second cycle appointments can be made.

What has happened in the (almost) 5 months since the announcement?
What are the stages between the announcement being made and appointments being made for patients? What organisations/committees/bodies are involved in this process? Where is the hold-up? Why are things taking so long? When will we have more information?
*
Who can we contact?*
Edwina Hart - Health Minister
Phone - 0845 010 3300
Address:
Minister for Health
Welsh Assembly Government
5th Floor
Ty Hywel
Cardiff Bay
CF99 1NA

Another option - find your own assembly member (AM) and write to them...
Assembly Member - http://www.assemblywales.org/memhome/member-search.htm

JE's boss (if at IVF Wales - NB it's not the clinic's fault) 
Jayne Herve 
Assistant Clinical Director 
Head of Midwifery Obs / gynaecology 
University Hospital of Wales 
Heath Park 
Cardiff 
CF14 4XW

possible next steps if we don't get answers...
- contact media 
- demonstration

...sorry if i've missed anything - please feel free to add.

I plan to write to Edwina Hart, Jane Herve and my AM this week 

xx


----------



## Sam76

I am also thinking of writing to the Western Mail - maybe a letter is something that others would be prepared to put their names to as it's easier to remain fairly anonymous?

any thoughts?
x


----------



## jk1

Morning Ladies!!

Just thought i'd logon before i go to work to get some contact details of who to write/phone....good job i did - what a nightmare - i'll write, phone and e-mail today!! also going to call the clinic to see what happening with the questionnaires that we sent back.

Have a good day everyone - fingers crossed that we get some answers!!

Jo xx


----------



## jk1

Hi girls,

Just e-mailed [email protected]

these are the contact details on the edwina hart website that Kara gave us

Jo xx


----------



## kara76

sam love your post

jo well done for emailing

i have a contact telephone number for a lady at the western mail, if you want it pm me


----------



## ratsy

Hi girls 

Kara -Ive had an e-mail back with regards to edwina hart it says my e-mail has been sent on to the health ministers office  

sam - are you ringing western mail il put my name down or im willing to phone aswel if you want 

JK1 - Any news from clinic today 

I definatly dont think we will hear anything till after the election , so i do think we need the paper or as kara said the media 

Sam likes the media   

R xx


----------



## jk1

Sorry all, had manic day in work again today - tried calling but only once and no answer - will try and fit in tomorrow although i do have quite a few meetings so it might be difficult.

I got a response back saying that my e-mail has also been passed onto the Health minister.  Am planning to write a letter to JE's boss tonight and hopefully send that tomorrow morning.

How did everyone else get on today?

Jo xx


----------



## ratsy

Ive just sent my local (AM) an e-mail 

I had a reply back saying they have over 100 e-mails a day and theyve given me phone number im off friday to london on my way up il ring then 

R xx


----------



## kara76

ladies this is a brill link to use

http://www.writetothem.com/

/links


----------



## PixTrix

well done girls got an assessment to get sorted and then going to get on the case


----------



## ratsy

Kara thats brilliant and so easy to use i sent it off just now 

We will get there girls 

R x


----------



## jk1

Kara, that link is brill - i just e-mailed my AM too - its Jane Hutt - is she quite high up? xx


----------



## jk1

just wondering if I should get my mum to write too....do you think it would help - she's in the Bridgend area so it would mean that their AM's would be involved too?

Jo xx


----------



## Sarahob

Hiya Ladies

Well its certainly hotting up again on here! We will not be beaten hey?!!??

I e-mailed my AM last night (Sandy Mewies, she represents the Holywell, North Wales Area) she e-mailed back this morning to say she would look into it for me.... then she e-mailed again at 15:30 to ask me to phone her office to give full details...

I also e-mailed my MP last night (David Hanson) get this - I e-emailed at 21:34 last night, he e-mailed back at 21:52!! I didn;t check my mail last night, never imagined he would e-mail so late! I am sooooo impressed! He said he is going to look into it and will contact Edwina Hart on my behalf....

Have got two of them on the case now! I am quite impressed because the MP's must be busy now with the election being announced!

xx
Will phone my AM tomorrow as she requested and will let you know tomorrow night!


----------



## kara76

with that link they have to reply lol

good on ya girls, get as many people to write as you can...power in numbers


----------



## ratsy

hi girls 

Just had an e-mail back from my local AM  david melding ,He said he is away from his office till the 12th of april but will respond to my e-mail as soon as hes back so at least that somthing 

Sarahob - whoo hoo get on you girl    you could run for council at your rate you can be our PA , youve been brilliant youve even got yours to answer  

They will have to act on this i dont think they realise how strongly we feel  about this  

R xx


----------



## jk1

I just had that back from David Melding too - i have e-mailed all 5 AMs and our MP tonight!!


----------



## ratsy

ooh thats good 2 e-mails direct to him we need more  

R x


----------



## Sam76

Wow - what a busy, wonderful bunch!  

I've had a mental day in work so no progress to report.... yet. I'm off to Scotland for a few days very early on Saturday so letters/emails will be going out by the end of Friday. 

Ratsy - I'm happy to contact Western Mail on my return (Thursday next week) but if you want to do it any earlier please go ahead - I'll PM you my mobile number if you like and you can pass my details on to them too if they want to speak to different people.xx

I'll be speaking to Mum and Dad to see if they'll write as well - it can't hurt can it! (My AM is Irene James - not as high profile as some of the others I've heard mentioned, but don't suppose that should matter)

lets keep it up xx


----------



## jk1

Sam - you are fab - i wish i was as brave as you and Kara about speaking to the media xx


----------



## ratsy

sam i will try and phone on friday im off work then 

R x


----------



## Sam76

thanks for the vote of confidence Jo    but i've never done anything like this before and get sooo nervous (shaky hands, shaky legs and shaky voice) when i do a presentation or anything! The itv thing was a good experience even though it wasn't used - i didn't have long enough to think about it to be honest! (i reckon Ratsy's been bitten by the media bug too   ).  I'm hoping that speaking to a journalist should be fairly straightforward - the most tricky part might be finding someone who's prepared to listen and report it. 

Knowing how much this means to me and all my FF's (and knowing how much hard work has gone before) is inspiring me to want to do something/anything i can - and i can see with all the activity here that everyone feels the same  xx 

I'm sure raising the profile of this amongst politicians is going to be key to create that all important noise that'll make sure whoever's holding the purse strings or able to make a decision is sitting up and taking notice and prompted to act... well they'd better be  ... never pays to underestimate the FF's  

we'll get there    xx

R - i've just seen your post - that's fab - I'll PM you my mobile number in case there's anything i can do - feel free txt me or pass it on to them if that's of use. xxx


----------



## julespenfold

Hi Guys

Apologies for my absence been a mad week.

Kara your bit on ITV Wales was fab, how you managed to keep away the tears I don't know and your nursery looked fab  

Its great that you are all starting to get responses and Sam your post is FAB with all that info of who to contact.

Personally I think I am going to wait until after my follow up next week before I write any letters/emails to see what they say to. Also as with most of you I am not able to do make any phone calls in work.

I just get angry every time I think about this. It took me nearly two years on a supposed year waiting list to get the first tx to now be looking at the same kind of wait to have a 2nd is riduclous considering how long they have known this was going to happen. Tx is stressfull enough without the added stress of being left in Limbo while someone in and office somewhere decides when we can use what we are entitled too (soz for the rant)

Good luck to all xx


----------



## Sarahob

Julespenfold - I have my fu after my first tx next Wed so will obviously be raising the funding issue then! Have already phoned the clinic tho and they said they only perform the tx not decide on funding do not too hopeful for next week!

I replied to my e-mails from my AM and my MP... guess what my MP e-mailed back 4 mins later! I just said you for taking the matter up on my behalf and he replied to that as well! 

Is there anyone else from North Wales on here or are you all down South? I may just be getting the replies because they haven't yet had the query raised and therefore don't realise what a nightmare it is!!!

xx


----------



## ratsy

sam - im not that brave to be in paper   so i dont mind phoning and saying but def wont go in paper as i dont want work to know im having tx my boss knows and my HR  dept but where i work so god damn noisey i swear and it drives me nuts last time i had tx they just thought i was and was all talking bout me when i came back looking at my belly ( how disgusting is that )   

So i might wait for you to get back im willing to phone them aswel and say but dont want my name or anything in paper soz bout that but cant risk them finding out 

I wont be having the funding but il help out best i can coz its really wound me up what they have done so im more than willing to help you ladies get yours anyway i can 

R xx


----------



## jk1

Thanks R - have you def decided to go private then?

Mum and Dad just called back to say they e-mailed their AM's about it too using the link from Kara!!


----------



## jk1

forgot to mention that I wrote the e-mail for them so all they had to do was copy and paste it - when mum called she said 'we corrected some of the grammer'!!! hahaha typical - it didn't need correcting!!! xx


----------



## Sarahob

JK1 - love it bout the grammar!!!... made me giggle


----------



## Sam76

Kara - thanks - that link (http://www.writetothem.com/) is fantastic - it makes it so quick and easy to write to AM and MP (sets out letter format and everything!) would def recommend it to anyone thinking about writing.

I've sent email to my AM (Irene James) and MP (Don Touhig). I asked for help in establishing exactly what the announcement ('access to treatment from April') meant and asked questions about what's happening, who to contact for more info etc and rounded it off with the following...
"Undergoing fertility treatment is unpleasant and stressful at the best of times. The hopes raised following the announcement have been cruelly dashed by the current uncertainty and lack of information for patients."

Fingers crossed that like you, I'll get a response soon.... Will keep you all posted....

Jules - good luck with your follow-up hun xx Let us know how you get on and whether they're able to give you any more info. xx
R - I understand completely - no worries - I'd have thought that they would be interested in getting people's stories more than names. I'm happy for my name to be given (wouldn't fancy having my pic taken tho  ) Keep me posted if you contact paper, otherwise I'll contact them at the end of next week. If it takes as long as i think it might to get appointment for 2nd cycle i think we'll probably be self-funding next cycle too... I'm enjoying having something to focus on! xx

/links


----------



## ratsy

Ah bless your mum and dad   loving the grammer typical parents  

Yes i think so i spoke to nurse (dont want to mention names ) and she asked when i was 40 i said next year and she said oh it will be nearly 40s first so i class that as people who only got months till 40 

Ive had my immunes tested as i have problems with my immune system it attacks embies so ive just paid £1720 for these blood tests and the results last for around 6mths or il need them tested again .so my money will be wasted .and somehow i dont think it will be sorted in 6 mths 

myself and dp been talking im 39 in july and dont really want to wait another yr to have tx as il def be nearing 40 its just wasting time we think why wait till 40 when i can have it in july my mum said just book it and wel sort it out between us so im going for my follow up in london on fri and il go from there 

Im gutted but what can i do  

Il help as best i can tho  

R   x


----------



## jk1

R - i'm gutted for you too - but fingers crossed you won't need another cycle after this one anyway so it will be worth it in the end! xx


----------



## Sam76

R   xx  hoping that things get sorted one way or the other hun x Good luck for FU on Friday x


----------



## ratsy

Thanks girls  

I think il write to the   she might sort it for us ya reckon    

God you got to laugh or youl cry 

R x


----------



## Sam76

if you're in London on Friday perhaps you can pop to the palace and have a word   x


----------



## Wrighty

hello all

sorry i havent been on for a few day. I've been really busy. 

I can see a few of you have been busy aswell.
I've sent emails to my AM Karen Sinclair, my Mp Martyn Jones and Edwina Hart hope to hear something back very soon

will post as soon as i hear ok

anita x


----------



## ratsy

Hi girls 

Ive had 3 e-mails back from my local AM  

One has attached to the e-mail the letter he has already written to the health minister WHOO HOO  , It was fab he even put under it a list of questions that we need answering  

He wrote at the bottom he cant understand how given 5 mths no staff have been trained knowing they were to recieve this funding   how good is he huh 

Im still waiting on edwina heart  

Hope rest of you have had good news 

R   x


----------



## jk1

Hello - i got that e-mail too R - the one with the letter to Edwina Hart - it was the e-mail i sent to him!! hahaha - i think he virtually just copy and pasted it!!! hahaha 

Only had acknowledgment e-mails from the others saying they will look into it for us

Jo xx


----------



## Sam76

Great to hear you're getting responses - and just goes to show that it's worth lots of people contacting same person (even if that does mean they copy and paste   ) it means that we know that the right questions are being asked.

I am disappointed (although DH says he isn't at all surprised) that I haven't even had an acknowledgement for the emails I sent. Both AM and MP are in pretty safe seats and MP is standing down at the election so I'm fearing that they're a bloody waste a space   (and certainly won't be getting my vote!) Will give them another day to send some kind of response and will be taking their numbers with me to Scotland if I don't hear from them!

will keep you posted....


----------



## Wrighty

hello ladies

ive not had any response yet but wanted to let you know that i lady on the ICSI LWH thead has had her funding through and goes to pick up her meds on the 30th april. she said the hospital had the go ahead this morning to start the 2nd cycle for welsh ladies so some funding is getting through im going to ring them tomorrow see what they have to say about my treatment

anita x


----------



## jk1

oooooooooohhhh how exciting - i'm going to ring ivf wales tomorrow - have the day off to go to London for my nan's 90th birthday so will have plenty of time to call them.

Jo xx


----------



## Sarahob

Hiya Girls

Just a quick update... I phoned my AM's secretary as requested today and went through my history with her... she made some notes and was passing it to my AM inorder for her to follow it up with Edwina Hart... will let you know when I hear any more!

I read about a lady on here mentioning LWH and about funding being granted... I had my tx at LWH aswell so may just phone them in the morning to see how it was agreed!!!


God its so frustrating, but we will get there!!!!


----------



## Sarahob

Right Ladies I have some fab news!
Just been on another thread and one of the ladies said she had rang the clinic where I have had my tx and was told the funding has been agreed for all welsh patients and just to phone up and book next tx!!! I am phoning at 9am tomorrow so will let you know!
Fingers crossed
Kara you may have worked your magic!!!

xx


----------



## lisac73

Hi Ladies....

I just spotted this thread....

As Wrightywales and Sarahob have said....I called LWH this morning with regards to starting our 2nd NHS funded icsi.....I was expecting to be told to go via my DR and to call back in the next couple of months,........

However to my surprise the Nurse said they'd had the go ahead to start booking in 2 nd NHS appointments for welsh couples this morning.......shell shocked was not the word....... 

They went off to find my file....called me back half hour later and I'm booked in for 30th April......to collect my drugs....

I'd already booked an app with my DR just incase they needed me to get re-referred again...but nope...I've cancelled it!

I hope this gives all of you some hope......I know for the last 3 months I have been worrying sick!!

Lisa x


----------



## ratsy

Oooh great news 

I will phone clinic tomorrow and see what debs says 

Im not holding much hope tho for myself 

JK1 - il pm you my mobile and txt me if you here anything 

R xx


----------



## Sam76

fantastic news - i really hope all clinics are geared up to start booking appointments...   x


----------



## Laura36

Wow, that's good news.  Hope you manage to book an appt Ratsy!

I'm 36 so I guess it's going to be a bit of a wait.


----------



## jk1

laura - you may not need it!! xx


----------



## kara76

i hope this means great news for everyone, if i hear from my contacts i will let you know. i know they were contacting edwina direct!


----------



## ratsy

Thankyou laura  

And lets hope you dont need yours  

R xx


----------



## miriam7

really hope the clincs got the go ahead now ladies


----------



## kara76

i bet your all very on pins waiting to call this morning...i hope there is news


----------



## josiejo

Hi everyone, 

I called the clinic yesterday and they still didn't have any news. You could hear the frustration in her voice when I asked, really feel for them.

Hopefully the news will be differently today.


----------



## Wrighty

hello ladies 

been trying to ring since 9am its now 9.25 and still not spoke to someone


----------



## Wrighty

well im through and the lady just said she doesn't think its started yet going to check now


----------



## Wrighty

well shes going to ring me bk fx its gd news x


----------



## Wrighty

hello ladies

well i've been waiting for them to phone and nothing so i wrote on the icsi LWH thread and got a nice reply from milliemay to phone them back and ask to speak to Debbie - so i did - Debbie said that they started booking the 2nd cycle appointments as of yesterday and i am on the list she said i should hear something in the next few days. think i will give them a few weeks lol. so glad that i know something now just waiting to hear. omg im so excited         

still had no replies to the 3 emails i sent. not even to say they have recieved them and are looking into it

fx all you lovely ladies hear something soon xxxxxxxxxx


----------



## Sarahob

Hiya Ladies

Spent most of the day on the phone trying to get through to LWH... also had phone call directly from my Am Sandy Mewies... she has sent e-mail to Edwina Hart telling her of the difficulties and has me to contact her when I speak to LWH again - good or bad news!

Anyway... after trying all day I finally got thru to LWH at 16:00 and ended up in tears .... of joy!!!
They confirmed the go ahead for second tx has been give, I came on my second AF today, and so phone on the first day of my May AF and I will proceed to tx!!! I cant believe I started crying! My DP looked at me as if I was mad!!! But you all understand how stressful its been just getting an answer! Tell me I am not mad for crying please!!!

Thanks Kara!!!


----------



## Wrighty

so glad your sorted sarah   

think i will still have a bit more of a wait then some of you older ladies as they haven't given me a date to ring just said that i will hear more in a few days but still so happy that its happening

thanks kara and all you lovely ladies that have helped to get this funding xxxxxxxx


----------



## Sarahob

Wrighty I don't think they are looking at age... because when I phoned they just said yes it was happening and phone on next cycle... so you should be okay... I would keep pestering them!!! 

You made me laugh with the "older ladies" comment - we are in our prime!!! I keep telling my DP that! Keep him on his toes!

xx


----------



## ratsy

Hi girls 

Phoned ivf wales today they havnt heard anything so still the same as before 

Gutted   

R x


----------



## Wrighty

hope it didn't sound like i was calling you old cos your defo not lol just that you are a few years older than me and i did hear they were doing the ladies closer to the max age first. you are in your prime keep telling hubby that.


----------



## Wrighty

rasty - sorry your still not getting sorted keep pestering they will have to sort something out in the end


----------



## ratsy

I know im gutted 

To be honest i think even if they have the funding it will be ages as we havnt got premises or staff , my consultant said they just about cope with the staff and premises now never mind with extra patients and she said it will be 70% extra work load , i know im sounding negative but ive got be realistic  

You ladies are with LWC .Its a bigger clinic so maybe thats why   Im so pleased for you girls tho at least your clinic starting it we need second cycle babies now girls  

Im not phoning again they sounded fed up today when i rang 

Goodluck girls  

R   xx


----------



## Flash123

Hi all,

I spoke to one of the senior nurses at IVF Wales yesterday. She was fab and I felt so sorry for her. I was told they have no idea when treatment will start, couldn't even begin to hazard a guess in fear of disappointing patients. It must be so frustrating for them. She also said no criteria had been set as to who would be seen first. When I said I had phoned last week as was told near 40's would be first as I am only 33 I would have a long wait she said "near 40's first - that's news to me! I'm not aware of that criteria!" 

I also spoke to a nurse this afternoon. She said if i could to go ahead with a SF FET as who knows how long the second funding would take. 

As I have said - I feel so very sorry for the staff because they can't do right for doing wrong but it is so very frustrating. I am having a pre-treatment op next month - why I don't know because there is no treatment to follow!!!!


----------



## Flash123

Ratsy - I was told the same thing about the work load, premisis, staff etc. Who knows how long that will take to organise and that is before they even start treatmenting.

DH and I need to consider carefully our options.
1. Do we cancel op and wait to be put back on waiting list when funding is sorted. That could be next year. I am not gettting any younger and another year of this would kill me I think. Also it another year later to look into adoption if it fails.

2. Go through with op and sf FET. Can't afford a full cycle.

3. Walk away now and start looking seriously into adoption.

Time to answer some questions me thinks.


----------



## ratsy

Hi liz 

Its a hard call isnt it myself and dh have had a long chat and decided to book our next cycle in next couple of weeks 

Im 39 in july so def can wait and dont want to wait another yr 

It was JE  and senior nurse  who told me nearly 40 first , . This is the thing everbody getting told different things . when my dp phoned we were told i was 4th on list ,Then at my consultation was told nearly 40 first and im only 39 .so they go first and people with low egg reserve so dont know where the 4th came from  

I dont know liz what a nightmare  

I think youve got to do what you think best . your best bet is to ask JE  about the nearly 40s shes the best to ask before you make your mind up like i said were getting told different things you might be told different to me  

I understand how you feel i was devasated after being told i was 4th and now nothing we had long long talk and made our minds up , it will come to you whats best to do  

If you need to chat pm me anytime  

R   x


----------



## jk1

I called the clinic today and told them that the girls up north have been able to book appointments and the lady said they still didnt have any news. Sounds like we're all being to different things still.  It's so frustrating. 

Jo x


----------



## Laura36

I wonder if the London Womens clinic in Cardiff & Swansea would do the 2nd NHS cycle or do they just do private treatment? It's such a shame that there is a divide depending on where you live. Or perhaps IVF Wales patients could travel to LWC maybe?


----------



## julespenfold

Hi All

Just having a catch up. Thats great news about the 2nd funding at LWH at least its a glimmer of hope.

I have been told by three seperate nurses about the near 40 getting priority first so maybe they have changed that too!!!

I have my FU appointment on Tues so will bring up about LWH and see what is said, hopefully I will have something positive to post after then.

Jules x


----------



## kara76

hope you girls get news soon

i am still waiting to hear from my contacts and have also recieved an email about the petition which was vague so have replied and asked for more details


----------



## ratsy

Girls im going to e-mail alun michael later 

He dosnt take no messing my mum has got me on to him shes used him before il let you know how i get on 

R x


----------



## kara76

i think its crazy if the funding has been released in one place yet not another!!

LWC in swansea treat nhs patients but not cardiff as far as i know.


----------



## ratsy

Hi kara i think not sure the girls are with liverpool womens clinic the one where we had the biopsy 

So there north wales girls think  thats there nearest fertility clinic for them  

R x


----------



## kara76

yeah i think they use the clinic we went to hun and maybe a clinic in shrophire!


----------



## ratsy

Im glad the girls have got there funding i honestly am   im just glad they have released some of the money at the end of the day were all in the same boat ,But its not fair its been given in one place and other places nothing 

All clinics should have been told within days of each other .I think the way they have handled it is so bad 

I really feel for you and jules it looks like were all moaning honestly if it wasnt for you both we wouldnt even be at this stage and were all sooo grateful   , But its so hard not to get annoyed at the assembly for they way they have handled it 

R xx


----------



## kara76

i total agree that ALL clinic should have recieved funding and started treatment at the same time.....what the heck is going on


----------



## kara76

ladies

i need a list of points to send to the welsh assembly to be considered by Committee Members? , can you girls put something together by tomorrow afternoon?


----------



## ratsy

Ok thanks kara 

Il start some points 

1- Why has liverpool womens been given there funding and started booking people in for 2nd cycle and ivf wales still waiting to hear 

2- Why is the funding taking so long to come through 

3- Have procedures been set up to start training staff ie , jobs been advertised or even started looking for staff 

4- Have premises been found or have they started looking for pemises or will it be moved to different dept of hospital , or are they just sitting waiting for funding and then decide 

5- How long it will it take to start booking appointments when the funding comes through 

6- How long are they giving for all questionaires to be completed and sent back to clinic and then sorted out into priority

7- Some of us ladies are nearly 40 we have been promised this cycle and if its true new staff and premises alot of us wont get our cycle as it will be to late 

Are these ok kara not sure if ive done it right  

Thing is kara ive been thinking if none of the above have even been looked into it could be mths and mths as they will have to advertise the jobs then wait for applications to be sent back then people interviewed then trained and thats without the new premises ,looking for one and moving and what about a new lab being set up it all takes time . They knew all this back in november when you did your speech on that night so why has nothing been done theyve had 5 mths  

Glad there listening to you  

R   x


----------



## kara76

some are more so for clinic but i will send the ones i think to the welsh assembly hun. i dont know whats been looked into and what hasnt to be honest but i do feel that if LWH is booking for the second cycle other clinics should be doing the same


----------



## ratsy

Thanks kara 

Ive asked clinic these questions and they said they dont know  

So looks like there waiting for funding and will go from there i was at least expecting them to say theyve stared looking for staff / premises but obviously not 

Lets hope we get some good points il have a think see if i can think of any more 

Julespenfold - how did you get on at clinic today any news  

R x


----------



## jk1

Hi Kara and Ratsy,

I think Ratsy has covered pretty much all the questions I have asked in my e-mail to the AM's and our MP.

I don't think there is anything more to ask - the main thing is why have they received their funding up North but not down here - its so frustrating isn't it.

Jo xx


----------



## julespenfold

Evening Ladies

Had my appointment with JE today, she seems as frustrated as us that things haven't been sorted yet.

She said it is being held up by the Finance Department of the hospital as she has beeen ready since January, she is sending them emails at least once a week to try and get a staight answer as to when they can get the ball rolling. I mentioned that FF girls were writing to the mp's and am and she didn't think it would get very far as its the hospital rather that are stopping things at the moment. The impression she gave me is that there is no issue with the actual funding it is there but the Hospital for whatever reason are arguing with the

She seemed surprised that the north wales girls had started to get appointments and said this is probably because there are less people in their area that they have been able to start sooner.

The questionaires are a requirement of the welsh assembly and are being used to set up a database of those waiting. The impression I got was that if you don't fill out a form you wont get contacted when they do start. Nearly everyone in the clinic today was filling one out when I was there so hopefully everyone who needs one will get one.

*If you haven't done so already call them or pop in and pick one up.*

I did ask if she had any idea how long it might take and she just shrugged and said she had been ready since January and they are no further forward now. With regards to criteria once the funding is released by the hospital they will be contacting people on the list starting with the older ladies, she did mention that there will be hundreds on the list so may take a while.

I think I spent more time talking about the funding then me during the apppointment and unfortunately we are not in a position to self fund so will have to wait for how ever long it takes.

Sorry if this is a bit of a ramble but I hope it helps to clarify some of the points you have raised. I found JE very open and the info I have had personally seems to be consistant. She ended by telling me to have a couple of months off and if I haven't heard give them a ring in a couple of months time.

She also said she would be posting on the website to keep us all updated and hopefully help reduce the volume of phone calls.

Kara - I think that some of the questions may be covered by the above, my main question would be to ask why the delay's.

Hope this helps a bit

Jules xx


----------



## jk1

Girls, got the following reply to my e-mail from Edwina Hart:

Dear Joanne,

Thank you for your e-mail dated 7th April regarding the funding for a second cycle of IVF treatment on the NHS.

I can confirm that as of 1st April, Welsh IVF patients can expect to receive two cycles of treatment on the NHS and that patients who have had one cycle will be assessed against the same access criteria as they would have for their first.  There will be some leniency around the age criterion.

Since my announcement on the additional funding last November, our specialist fertility commissioners have been in detailed discussions with the fertility clinics about impletmenting the second cycle.  Following these discussions, commissioners wrote to all Local Health Boards in Wales in February, asking them to communicate the move to two cycles of IVF to GPs and Gynaecology Departments.

I am sorry to hear that your fertility clinic is telling you that it is not aware of the arrangments.  May I suggest that you contact your GP to consider making a formal referral.


Thats it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I don't understand why the clinic havn't told us to get referred via the GP and if that's what we have to do why are the clinic sending out questionnaires!?!?!?

I'm so wound up with her response, i'm going to reply now and tell her this is rediculous and so is her response!! (i may word it slightly better then that!!)

Jo xx


----------



## jk1

Just read Jule's post now...maybe i'll hold off replying and get my letter off to JE's boss instead - not really sure what to do for the best at the moment, starting to think that should just forego the second NHS one and go private and pray it works as have enough money to do one more cycle and then will start to struggle after that..

Jo xx


----------



## julespenfold

Hi Jo

I think i was posting at the same time as you, my understanding is that you will not need another referral just ensure that you are on the list. If you have returned your questionnaire then you are on the database and once the funding has been released you will be contacted. From reading your email I think those not currently in the clinic may need a referral from their gp.

In our case I do not think that the clinic is unaware of the situation just that they do not have acess, for some reason known only tho the Finance Department, to the actual pennies.

Its a horrible dilema as to whether to self fund or not, personally we are going to wait until September and then if not heard anything look at it again

Jules x


----------



## ratsy

Hi jules 

Did JE  say there were hundreds of older ladies waiting or did she mean in general 

R x


----------



## julespenfold

Hi R

She just said there were hundreds in the same boat as me so I think in general. I was there for about an hour today (they were running behind) and I saw at least half a dozen ladies complete and had in forms if they have that every day thats a lot of people

Jules x


----------



## kara76

jules it seems you got all the news and its pointless me writing an email as it is a hospital issue!!!

seems hospital policy is now the biggest issue and i hope its sorted soon. i think that if you cant wait and can self fund then maybe you should


----------



## ratsy

Im waiting until next week to see when i can start my immune tx and then im going to ring next week and book my planning appointment for private tx 

I cant wait anymore its taking too long im 39 soon 

Goodluck girls hope you all get your bfps  

R x


----------



## kara76

maybe letters to the hospital is the way forward!

does anyone know what is happening with lwc in swansea?


----------



## jk1

ratsy, seriously considering the same but willing to wait a couple of months to see if anything gets sorted - def want to do a cycle this year so if that means going private then so be it I guess xx


----------



## ratsy

kara i just posted on there thread and asked them il let you know 

JK1- honestly i really dont blame you i think why wait till nearly 40 waste those 2yrs nearly or a yr in my case the longer you wait the lower your fertility its just not worth it if i was younger then id wait even thats hard tho when all you want is a bfp 

when i went to Llandough hospital the gyna there told me when you reach 35 every month in the fertility world is like a yr off your fertility with your eggs he told me that when i was 34 

Its always stuck in my head   youve got my number txt me anytime   

R x


----------



## Queenie1

wow lots been happening on here. how annoying that lwh is starting tx and ivf wales are not. makes you want to go there for tx.

is there any need now for me to contact any one now and if so who is best .

i would like to know that if i have lap in august that i am gonna be able to have tx within the 6months period after it.

well done all of you who have been phoning and writing


----------



## Wrighty

hello ladies

well had a letter today off my MP Martyn Jones saying he is going to look into it but looking through the last few post seems he doesn't need to so will have to send him a nice email explaining that since i wrote the email it has been sorted out. hope your ladies down south get something sorted out soon. 

well im still waiting to hear something. phoned debbie at 11 this morning and still waiting for her to phone back.


----------



## Wrighty

hello ladies

just had an email and  though i would post what was attached to it for everyone to read

this was the email i had
-------------------------
Mary Burrows, Chief Executive has received a letter from Mr. Martyn Jones MP regarding your e mail to him regarding IVF treatment.

I am attaching  a copy of a letter received in February 2010 from Health Commission Wales which I do hope will be of some use to you – it does have a contact number of the Specialist Clinic.

I do hope you are successful in obtaining further information.

Kind regards

Jill

and this is the attachment she sent 
--------------------------------------
Thursday, 11 February 2010 

To:  Heads of Planning, Welsh Local Health Boards

Dear colleague,

Following the Minister’s recent announcement that as of 1 April, Welsh IVF patients can expect to receive two cycles of treatment on the NHS, I would appreciate it if you could circulate a copy of this letter to all GP Surgeries and Gynaecology Departments within your Local Health Board.

IVF Patients who have had one cycle of NHS treatment, and are entitled to a second cycle must be referred to a Specialist Fertility Clinic as soon as possible.  I hope the following information will assist referring clinicians in that process.

The referral pathway is as follows:

West Wales The London Women’s Clinic, Swansea
Mid Wales The Fertility Centre, Shrewsbury & Telford
South East Wales IVF Wales, University Hospital of Wales, Cardiff
North Wales The Hewitt Centre, Liverpool Women’s Hospital

I can confirm that patients who have had one cycle will be assessed against the same access criteria as they would have for their first. A copy of the access criteria is enclosed for your information.

There will be some leniency around the age criterion, and patients should not be treated as a new referral.  Patients presenting for their second cycle will not be required to wait the mandatory 12 months, and they should be treated within 26 weeks.

If patients are over 38 years and 6 months they will still be entitled to have treatment.  There will also be some flexibility associated with the criterion that specifies that the patient must have received treatment prior to their 40th birthday.  If patients are 40 between 1st April 2010 and 31st October 2010 they can still be accepted for treatment, however they must have had their treatment prior to 31st October 2010.

The any previous NHS cycles criterion will also be changed to reflect the change in policy. 

The three or more cycles criterion remains unchanged, and if patients have already had three cycles of treatment which includes their previous NHS cycle they will not be entitled to the second NHS cycle.

For all other enquiries, please contact the Specialist Clinic alternatively you can contact Michelle Ralph, Assistant Commissioner, Health Commission Wales on 02920 807582 or [email protected]

Yours sincerely

Zoe Goodacre
Specialised Commissioning Manager


----------



## kara76

nice one hun, now we just need the hospital to pull their finger out


----------



## Flash123

My word ladies - you have so busy. Well done all of you.

One questions really - if people have paid for private preparatory treatment having originally being told second NHS cycle would be soon ( I was booked in to start 2nd cycle on April 12th!!), if a hold up is due hospital bureaucracy and administration , can the hospital be held liable for what has been spent?

I have been told that I can go ahead with a 2 hour prep operation next month. Even though tx prob won't follow in the next 6 months. (effects only temp) If tx doesn't take place in that time, I can have op again when there is more info on waiting lists for 2nd NHS cycle. 

Therefore costing the NHS twice as much!!!! 
Also regarding my April 12th 2nd NHS cycle, I phoned the Friday before. Was reminded I had a planning appt for the Mon even though I had cancelled it weeks ago. When I explained it was for the 2nd NHS go and the funding wasn't sorted I was asked if I wanted to come in anyway and still have my planning appt - planning for what b****y treatment!!!

Sorry for rant but very premenstrual.


----------



## Sam76

Hey all - I'm back from Scotland - lot of catching up here!!

Not at all impressed with the response I've had from my MP -Don Touhig. I had a postcard sent to me with the couple of 'blanks' filled in - one of which said 'IVF Treatment' - a postcard - no bl**dy envelope, surely not the best way to communicate with someone about something that might be a reasonably private matter!! If our parents hadn't already been aware they jolly well would have been seeing that on the doormat when they came up to look after the dogs and cats wjile we were away! gggrrrrrrrr  

So, if I've got this right the current hold-up is with the hospital admin/finance/management. Therefore I think any IVF Wales patients should write to / email the hospital (same kind of thing that we did with the MP's and AM's). I think that if all letters went to the same person it would create more notice and might make them more inclined to take note. Tomorrow, I will try to find out who the best person to write to would be (and get an email address to make it easier). 

From the circular from Zoe Goodacre (thanks Wrighty  ) it states that patients eligible for a second round of treatment should be treated within 26 weeks (6 months), therefore I think we need to be asking when we write, just how the hospital intends meeting this deadline if there is no additional capacity (and no immediate plans to address this) and to get clarification of exactly when the clock starts ticking for the 26 week wait - I am just picturing being told in 6 months time that my wait has only just begun because the 26 weeks start from when you have a certain type of appointment / fill in a specific form!!!

...will let you know when i get contact details to write to. 

Sam xx


----------



## julespenfold

Thats a fab email Wrighty well done.

Sam - thats rubbsih just getting a card. If you can get us a central email to bombard that would be fab.

Kara - would any of your contacts be able to help with this?

Queenie - I would think you will be OK as long as you have filled in your questionnaire fingers crossed they sould have sorted all of this by the time you've had your op.

Liz - have no idea, seems that it would be silly of them to do an op and not be able to have tx but I wouldn't be surprised, rant away hun xx

I could live with a 26 week wait if it was guarenteed, fingers crossed it starts from 1st April. However I was told back in Feb that I was eligible so maybe it would start earlier for those of us already on the books, we can but hope xxx


----------



## kara76

i have had no response from my contact as yet and tbh ladies im gona duck out of here for a little bit as i have some things happening, hope no ones minds

your doing a great job


----------



## Wrighty

so glad i posted the email i really do hope you can use it to your advantage. im still not really getting anywhere yet but im sure i will soon.

kara - dont mind u ducking out for a while hun. you haven't got long left now til your baby arrives. im sure you have plenty of things to sort out ready for the big day  hope it all goes well for you. we will all miss u while your gone. thanks for everything you have done up to now you've help so many ladies me included so thanks again          xxxxxxx


----------



## Sarahob

Hiya Ladies

Kara - just before you go, thanks so much with everything you have done for us all... I've had my 2nd funded tx agreed and its all go ahead in May after my 3rd AF following BFN xx

Wrighty - well done hunny, that was a fab e-mail. It really amazes me that you haven't had your 2nd tx funded at LWH.. I hope they pull their finger out soon and get it sorted for you! xxx

xx


----------



## julespenfold

http://www.ivfwales.co.uk/

This is the link posted by Kara (thank you) and as promised by JE.

I dont think this changes things much but does confirm the older criteria.

/links


----------



## jk1

Hi Girls,

This one seems to have gone a little quiet - does anyone have any updates?  I've had a manic couple of weeks in work but will definately sit down and do my letter to the hospital this week.  I was also put on the list in Feb for the 2nd cycle by JE so am going to ask if the 26 weeks is from that time or from 1st April or from some other random date.

Jo xx


----------



## Laura36

I haven't managed to keep up on this thread. Can someone fill me in on what's happening? Is there a 26 week wait?

I was at the clinic for follow up appt on Wed and spoke with one of the nurses (didn't see con).  She said they will add my name to the list but I don't have to fill in any forms.  That sounds odd doesn't it as everyone else seems to have been given a questionnaire??


----------



## kara76

i had news from my contact but its only what we already know anyway!


----------



## julespenfold

Evening all.

I've heard nothing else recently JE did say to leave a couple of months before contacting the clinc.

Laura - Quick catch up the Cardiff hospital finance department are arguing over funding. We definately have the funding but as of yet the clinic have no access. If you scroll back to Wrightywales post she had an email saying that everyone should be treated within 26 weeks but the email did not say when it starts from. They have amended the age criteria and have said that they will be seeing those due to be 40 before 31st December 2010 first. 

Re the questionnaire we were given the impression that you had to fill one in to go on the list if I were you I would either pop in and get one or ring and they will send you one out better to be safe then sorry.

Thanks Kara x

Jo let us know how you get on xx


----------



## Laura36

Jules, thanks for the catch up that's great.  I will phone them for a questionnaire as I don't want to be missed off the list. I def want a 2nd cycle sometime before Christmas if possible.


----------



## Sam76

Hi all

sorry i've been a bit quiet - mad in work and trying to get appointment sorted with GP and nurse for prescribing and administering Gonapeptyl jabs (and referal to Mr G for keeping an eye endo)....

Anyway here's my plan of action....

Had a letter from MP with copy of response from Edwina Hart saying that I should contact GP for referal to clinic (don't think that'll help at all - will probably just confuse matters as they already have a completed questionnaire from me and JE saw us on 30th March and said we would qualify for 2nd funded cycle).

As the hold up appears to be with finance/hospital admin I'm going to email Jan Williams (Chief Exec Cardiff and Vale Health Board) this week - email address: [email protected] 

I will be asking for assurance that we will be treated within 6 months (as that's what I've had from Edwina Hart (via my MP)) and asking for confirmation that the 6 months starts from 1st April. I will also be writing to the clinic to outline my personal circumstances (with endo and the drugs that I'm taking - which you can only take for 6 months anyway) to get confirmation of what the next steps should be with regard to booking any type of appointment and keeping up to date with how things stand.

look forward to hearing how everyone else is getting on with funding.  best wishes to all xxxxx  
Sam x


----------



## kara76

sam edwina hart is sending out a standard letter, she likes to do this!!!!i recieved the same. gp referrel is pointless if you have done a form i woould have thought


----------



## jk1

Hello all,

Just called IVF Wales for update - sw reception man who was v unhelpful (maybe because he doesn't know anything but you could still be sympathetic).

Really can't decide what to do - he said they are still doing the questionnaire thing at the moment and that they will contact me when they are ready!!! when will that be - in 5 years time?!? - all very frustrating.

I'll let you all know if I hear any updates.

Jo xxx


----------



## jk1

I have also e-mailed Jan Williams - Sam have you had any response from her yet?

Jo xx


----------



## ratsy

Hi jk1

Ive booked my planning appointment im paying now couldnt afford to wait i rang 2 weeks ago and i got in for 19th may  i rang back friday to see if i could change it and the next appointment for planning is july 

OMG they must be chocker   

I really wish you all the luck in the world for your nhs cycle goodluck lovely im glad your not giving up i wouldnt if i was you  

R x


----------



## jk1

Thanks hun - i'm so paranoid that we have a private one and then the NHS one coming up when we are mid cycle or something!!  I don't blame you for not waiting - we're starting to wonder how long to wait as its six months since we started our last cycle now.  If they are booking private planning appts in July then we'll have to make a decision soon or we won't get a cycle in this year.

DH has suggested going to the Lister clinic if we decide to go private instead - I bet they have a massive waiting list too though!!

oh decisions decisions!!

Jo xx


----------



## Sam76

Hi Ratsy and Jo

Ratsy - well done on getting an appointment - can't believe the wait for a private one!

Jo - have to confess that I haven't sent the email yet (so unsurprisingly haven't had a reply   ) - the reason being that I know I'm on drugs to suppress my endometriosis for 6 months so have lost a bit of momentum because I feel like I've got a bit of time but will get onto it this week and let you know how I get on. Good luck with your decisions, it's so tricky to know what to do for the best   I know that looking back at our journey over the last 6 years there are a lot of things that I wish we'd done differently - but without the benefit of that experience you can only make a decision using the info you've got.... which frustratingly is precious little at times! I do think that we should keep asking questions so that people are reminded that we're still waiting for info. 

Take care xx


----------



## jk1

thanks for your reply Sam, I hope you are ok

Jo xx


----------



## Sarahob

Hiya Ladies

Just to let you know, its day one of my third period since BFN and phoned my clinic today... with baited breath!!!
Anyway, everything is fine, I was givem a drugs collection day for 3rd June and start d/r on that day too so after all the worry it looks like I shall be getting the 2nd NHS tx....

Good Luck to you ladies still waiting on news! It would seem the North Wales area is having more success than the South!!!! Whether its staffing or size of clinics I have no idea, just doesn't seem fair tho! 
xx


----------



## kara76

sarah thats great news, im glad the funding is getting through now we need it to get sorted down here in south wales. i think its down to the hospital now


----------



## Sarahob

.


----------



## jk1

sarah - did you mean to write something?  xx


----------



## Sam76

Just a quick update from me....

I've called clinic and have made a TIC appointment in July (self-funded for now but if funding is sorted will convert if at all possible!). I'm on gonapeptyl to suppress endo for 6 months and it's a treatment that can't be repeated due to side effects - so def didn't want to risk getting nearer to October to be told that I'd have to wait for next cycle.

Will keep you posted if anything changes xx


----------



## SarahJaneH

Good luck Sam, hope the funding gets sorted out in time for you xxx


----------



## kara76

http://www.assemblywales.org/bus-home/bus-chamber/bus-chamber-third-assembly-rop.htm

i cant copy and paste it but you girls might be interested in page 11 of the record of proceedings 19th may 2010 (the record-word document)

/links


----------



## PixTrix

thats excellent, thank you Kara


----------



## Wrighty

thanks alot kara that is brilliant xx


----------



## jk1

There is a little announcement today on the IVF wales site - nothing we don't already know though just saying that they are recruiting more staff etc and that they will contact people to arrange appointments.... xx


----------



## Wrighty

hello ladeis

i have a question and cant find any information on it. i have been told by liverpools women hospital that the 2nd ivf entitlement is only 1 ivf or 1 fet not both like my last cycle has any1 else been told the same??


----------



## kara76

Liverpool's womens hospital are wrong, you will get a fresh and frozen if you havent conceived


----------



## Wrighty

well thats what they told me. cried my eyes out when they told me


----------



## kara76

again i add they are wrong hun so dont get upset

i have this from a contact

I have also clarified that the 2 cycles consist of one fresh and one frozen and then, if the patient has not conceived, they will be entitled to one further fresh and one further frozen.



Hope that is helpful.


----------



## Wrighty

thanks kara i thought so but what do i do? i went to see them last week and they said they didnt know the full guideline for tx then so they been chasing it up for the last week and thats what they have came back saying 

and does it matter that i have the FET first as i have 2 frzen embryos left from last cycle?


----------



## Jule

Give them a copy of the NICE guidelines 2004 its written in there that you get a fresh and frozen.

JUst an update i done another interview last weekend and here is the link if anyone wants to have a look at the report
http://welshgreendragon.wordpress.com/2010/04/01/couples-to-receive-two-ivf-cycles/


----------



## kara76

a full cycle is one fresh and one frozen cycle so only 1 frozen transfer is included hun, have you the option of paying for a fet while you wait for your fresh cycle and then you might not even need a fresh go


----------



## Wrighty

thanks hun i know its only 1 FET But doest it matter if i have the FET first? or does it have to be in the order of ivf followed by FET


----------



## kara76

i would imagine it would have to be fresh then frozen but im not 100% sure


----------



## Wrighty

well if thats right thats why i only get frozen cos i have to use all my embies up.


----------



## julespenfold

to you wrightywales thats a horrible thing to here I hope they are wrong. Maybe you can keep the 2 embies from last time and have a fresh go and hopefully increase your stock of frozen?

I was chatting with the girls at the meet re the second go and Cath has very kindly offered to get the correct contact details for the bosses at the hospital so we can bombard with emails.

Once I have the address I'll post on here along with a draft of what I'm saying so that you can all see. 

Fingers crossed the assembly are putting a rocket up someone and we may start to hear some positive news about start dates


----------



## Wrighty

jules - i asked if i could have a fresh cycle first with me only having 2 frosties left  but they said no i have to use my frozen embies first and with that i get no ivf to follow so i miss out on my fresh cycle i really dont see why if the FET is unsuccesful and im entittled to it. ive been in touch with my local mp just to clarify things. she rung me and said shes looking into it for me and i should here back from her soon


----------



## julespenfold

Definately doesn't seem fair fingers crossed they are wrong and you can get a fresh NHS go


----------



## kara76

BBC News tonight at 630pm. 

seems their is a funding debate today at the assembly and not all funds have been released, will find out more later, i will be talking to the bbc also


----------



## Wrighty

good luck kara i wont see it til they put it online. i dont get the welsh news 

jules i hope they are wrong too got my MP and AM onto it now have to wait and see what they say

been looking on the assembly website and cant find anything saying it has to be IVF then FET but also cant find anything that says u get FET. question was asked on the 19th may about how many FETs per ivf cycle but it was never answered just gonna have to wait and see xx


----------



## kara76

BBC radio wales at 515pm ladies!

seems the conservatives are kicking up a fuss because full funding hasnt been released! must be something to do with Angela Burns AM


----------



## kara76

girls it is so very important you watch the bbc news later, i hate to say it but the funding issues are not great well in all honestly they take the ****

will let you know more when i have been given the ok as its confidentally atm


----------



## kara76

ok ladies
this is the state of play and i am sorry to have to share this news with you, hope it doesnt happen but i would advise more letter writing and have included my AM contact details and she will do all she can, this is the correspondence from Angela

When the Minister came to the IVF event at the Assembly and surprised us all with her announcement that she would fund the 2nd cycle we were all over the moon with joy. However, as ever the detail is in the small print and I have had a couple come to me who have been turned down since April 1st. IT seems that the cost of the additional cycle is approx £1.670m pa but the Minister has only provided £0.800m so the Local Health Boards will have to make up the shortfall.
I also understand that this funding is for one year only so after that we are either back down to one cycle or the LHB's will have to try and find more funding.
I have an FOI into the Minister asking if the 2nd cycle is statutory or discretionary i.e. can they simply not provide it in the years to come or is a 2nd cycle here to stay and the LHB's have to find it from other sources.
The Welsh Conservatives are hopping mad about this because it seems that the announcement was so opportunistic (the day of the Conservatives debate in the Chamber and the day of the IVF event). You were there, she said she was funding 2nd cycles & that the details had to be ironed out&#8230;like who is going to pay.
We will be raising loads of questions on this and I will let you know the result of the FOI when I get it 
angela's contact number so girls get calling
01834 869387 and I will act as coordinator & put them in touch with who they should speak too


----------



## julespenfold

Thanks again kara, saw you and heard you on the news today well done and didn't Tyler look fab.

Now I feel even more confused as I have never been refused just told not yet. Have lots more questions too is this number for Angela only in the daytime?


----------



## kara76

i assume its just the daytime number of her local office


----------



## julespenfold

Thanks hun, i'll try her tomoz lunchtime and see how I get on.


----------



## Sam76

thanks kara - you and tyler both looked fab xx

we're off camping to west wales for a few days but I'll def be on the case when we get back. Really hope there's something we can do to get things clarified and moving. xx


----------



## kara76

sam your heading my way, where are you camping?

i am really pleased angela is willing to help, she is lovely too


----------



## Sam76

we're camping on a farm - Dinas Island between Newport and Fishguard.
really looking forward to it - hoping that weather stays fine until we get the tent up and that the dogs behave and let us get some sleep in the nights...
usually end up putting them on the lead in the early hours and tip-toeing around guy ropes until they've had a wee and settled down!

xx


----------



## Jule

Hi Kara heard you on the radio but missed the tv sorry i assumed it was just radio.  Your interview sounded good but thats **** that they are not funding the 2nd cycle, that is not what was promised.  Does that mean all hard work was for nothing, what a ****ty governemnt we have


----------



## kara76

sam sounds lovely, i would deffo trip over walking dogs at that time with all the ropes lol

jule they are funding its just it seems that LHB have to fund half of it so it could end up a postcode lottery which was never mentioned. our hard work has paved the way and thankfully we have people in goverment behind is 100%


----------



## Jule

yes but the LHB are not all gonna fund and so as you say it will be a postcode lottery, it was supposed to be for the whole of wales, how annoying is that


----------



## Queenie1

kara you looked and were fab on the interviews. tyler was gorgeous lovely to see her.

i hope we can get this sorted. ladies just let me no what i can do to help ( i find it difficult to understand some of the political/fianical side of it)
i'm pretty good at petitions lol


----------



## mimi41

Hope this gets sorted for you ladies.


----------



## SarahJaneH

Link to bbc report:
http://news.bbc.co.uk/1/hi/wales/10176356.stm

Really hope this gets sorted very soon


----------



## PixTrix

thanks for all the info. As usual a fab interview and Tyler looked a darling. I am not going to let this lie what Kara and Jule started and the achievements of the petition will not go to waste. Got an exam coming up, but as soon as that is done going to really get on the case. I have got a picture of plackards outside the assembly in my head!!


----------



## kara76

i think a demo outside the assembly might be a good idea.


----------



## kara76

http://www.walesonline.co.uk/news/wales-news/2010/05/27/ivf-funding-could-fall-victim-to-cuts-91466-26538261/


----------



## kara76

about 150mins in

http://www.bbc.co.uk/iplayer/console/b00sj4ds


----------



## julespenfold

Left a message on Angela's phone asking her to call me back I'lllet you know how I get on


----------



## miriam7

really sorry this has happened i thought it was agreed everyone was going to get 2nd go


----------



## Jule

I ntice that the last link i put on here for the interview SAm and i done was the wrong one so try this one.

http://welshgreendragon.wordpress.com/2010/04/01/couples-to-receive-two-ivf-cycles/


----------



## PixTrix

Nice one Jule, I did have probs with the last link! Well done sam and Jule excellent interviews


----------



## jk1

well done Sam and Jule - fab interviews!! xx


----------



## kara76

great interviews girls


----------



## Sarahob

Hiya Ladies

Well just to let you know I had my drug appointment today and start d/r again tonight - this is thru the Liverpool Womens Hospital... I was so nervous going incase they said the funding had been withdrawn but everything was fine xx

Love to all

xxx


----------



## Wrighty

hi all

had an email bk from my AM Karen Sinclair and she phoned me just to make sure id had it

Email:-

I've looked into this and IVF services in Wales are commissioned by the Welsh Health Specialised Services Committee (WHSSC). The WHSSC is a new body that came into being on 1 April 2010 and is responsible for much of the work undertaken by Health Commission Wales, which ceased to exist on 31 March 2010.

On 17 November 2009, the Minister for Health and Social Services announced that women in Wales will have access to two cycles of IVF treatment free on the NHS from April 2010 (the previous policy was one cycle). Previous information provided to the Members' Research Service (MRS) by the Welsh Government stated that in relation to two cycles now being offered, patients who have received one cycle of NHS funded treatment are eligible for a second cycle if they still meet the access criteria.

The Welsh Government's website provides information concerning IVF and includes a link to the Commissioning Policy for Specialist Fertility Services, which was updated in April 2009 and can be seen here. The Commissioning Policy sets out the criteria for access to NHS funded specialist fertility services for Welsh patients, along with the commissioning responsibilities and service provision. The access criteria are available on the Welsh Government's website and can be seen here. Previous information provided to MRS from the Welsh Government confirmed that the guidance is still extant following the introduction of a second cycle.

The information from the Welsh Government also confirmed that the second cycle of IVF available from April 2010 will be the same as the first cycle. A cycle will comprise one fresh treatment, where embryos are transferred shortly after fertilisation, and one frozen embryo transfer where any viable embryos remaining after the first treatment are preserved and transferred at a later date.

I have been unable to find guidance that relates specifically to the use of remaining frozen embryos from a patient's first cycle and therefore I am contacting the Minister for Health and Social Services for information on the guidance that would apply to your specific circumstances.

I will let you know what comes of that, but in the meantime I hope this is useful. If you need anything further, please get in touch.

Regards,

Karen

Karen Sinclair AM

here are the two links she sent aswell incase any1 fancies a read

http://wales.gov.uk/dhss/publications/healthcommission/policies/ivf/accesscriteriae.pdf?lang=en

http://wales.gov.uk/topics/health/hcw/waywework/specialisedinfertility/fertilityservices/?lang=en

nothing really new so still not any clearer as to why im only entittled to a frozen cycle so will just have to wait and see what reply Karen gets from the Minister for Health and Social Services.

/links


----------



## Wrighty

yay they were wrong phoned debbie today and she said i do get1 fresh 1 frozen and it doesnt matter that i use the frozen first so happy now cant wait to get started xx


----------



## Sam76

woo-hoo wrighty! fab news that you've had that confirmed and bcan look forward to next step xx


----------



## Sarahob

Hiya Ladies

Wrighty - ahhh am so pleased you have finally got tx sorted! Talk about stressful - any idea of a start date?

xx


----------



## Wrighty

thanks ladies so excited
FET will be in about 3 weeks not sure how long after the FET (if it dosent work       )  i  will have ivf as i dont know yet if we can still use the donor we used before or if they have to look for someone else just glad to know it will be happening

xx


----------



## julespenfold

Thats fab news wrighty xx

Had a phone call from Angela office and a quick chat with a lady called Cynthia she has asked me to email across all my details and is going to look into my case, I'll keep you all posted

Jules x


----------



## Sarahob

Good Luck Jules, hope you are successful getting the tx xx


----------



## Sarahob

Wrighty - ah I am so pleased, 3 wks is not long to wait after all you have fought for! Are you gonna have tx at Liverpool?

xx


----------



## Wrighty

jules - good luck hun xx

sarahob - yeah having treatment at liverpool x


----------



## Sarahob

ah cool wrighty - you never know our paths may cross at some point xx


----------



## kara76

wrighty im glad you got it sorted


----------



## kara76

http://www.walesonline.co.uk/news/wales-news/2010/06/15/fear-of-two-tier-fertility-system-as-welsh-rules-are-introduced-91466-26651693/

/links


----------



## PixTrix

Thanks Kara. Things just get worse talk about couldn't come at a worse time. 

I think it may be a good idea for us girls who would like to fight this to arrange a meet especially for talks of a way forward with all this and fight for our entitlement that should have been granted in April. 

Who'd be up for forming some kind of group? I know that it is a very private matter but we can all want our second go, but if we are silent or hope that others will fight to rectify things, then things will never get better. United we stands.


----------



## Jule

I just looked at the link it i disgusting isnt it.  The fight wont help me pix but if you need any help let me know.  It would be good though if as many of you who will benefit can campaign togther


----------



## PixTrix

THanks Jule that would be fab. 
Just want to add that don't want to take away from all the hard work that Jule and Kara have already done, we wouldn't be where we are now if it had not been for you two. big thanks. It is up to us all to keep pushing this forward.


----------



## Sam76

count me in Pix!
x


----------



## PixTrix

Excellent, thank you Sam  I'm off to cornwall for a week on Saturday so will hopefully get in the swing of things when back


----------



## kara76

im in girls

will help if and when i can and good for you girls, i think this has to be fought for


----------



## julespenfold

Sounds good pix, I'm in although couldn't do anything public happy to do anything else.

How about we have a chat on Saturday, if thats OK with you pix, and come up with some possible meet dates?


----------



## smcwales

I can't believe that article!  How stupid are the people making these decisions.  The numbers just don't add up!!  If I can help in any way I will.


----------



## PixTrix

Brill girls. Be great if you can have a chat on sat and sort some dates. Taking laptop and broadband dongle with me so will be having a peak on here!


----------



## mimi41

If i can help i will


----------



## josiejo

I too will help if I can. 

I am losing all hope, 2 1/2mths since it was supposed to have been implimented it seems there are just more and more hurdles been thrown in the way and still no answers from the clinic.

Has anyone spoken to them recently, I last called a couple of weeks ago and was told they were going through the forms.


----------



## helen_26

You can count me in too girls. I won't be there on Saturday, but if you keep me posted I'm willing to do whatever I can.


----------



## kara76

i think we need to go something like a demo and get media coverage and this means we need lots of people. i know that there are many of you that dont want to go public so i have thought of a way round this!

maybe the people that dont want to go public where masks and we use this to demostrate the fact that we are not being seen or heard!!! it could work


----------



## mimi41

hat a good idea hun


----------



## Taffy Girl

I haven't really kept up with this thread but am willing to do anything I can to support you.


----------



## Queenie1

count me in as well.


----------



## sian5038

Hello,

Count me in too.
x


----------



## kara76

sian hi and good to have you on board

we had a little chat yesterday and decided we need to meet up to discuss how we are gona fight this so watch this space

remember we have to stick together


----------



## Queenie1

sorry if i sound thick but what is the hold up now is it the hosptial( not the clinic) or is it to do with politics. 

so basically should i be writting to someone at the hopsital or my local am/mp.

sorry am getting a little confused over everything.


----------



## julespenfold

Hi Guys

Queenie its not really clear it would appear that the hospital have been given funds but not the amount they were promised it and seems difficult to get a straight answer from anywhere.

I think how it stands at the moment is the government did not give the hospital what was promised, the hospital have held onto the money they do have and the clinic is trying to do what it can but as of yet doesnt have the go ahead from the finance bods to start the 2nd cycles on the nhs. The other worrying thing is that the clinic now appear to be loosing key members of staff so who knows what will happen.

As Kara mentioned a couple of us had a chat on Saturday and decided we need to make a list of those willing to attend a meeting and get involved so that we can arrange a meeting in a suitable place. Please can you add your name with the area you live in so that we can arrange a place and date :-

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent


Thanks
Jules


----------



## mimi41

Count me in i'm from pembrokeshire


----------



## kara76

funding meet

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent
3. mimi - pembrokeshire
4. kara - pembrokeshire


----------



## Jule

Can someone add me I'm on my phone and can't do it


----------



## julespenfold

Funding meet

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent
3. mimi - pembrokeshire
4. kara - pembrokeshire
5. Jule - Bridgend


----------



## helen_26

Funding meet

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent
3. mimi - pembrokeshire
4. kara - pembrokeshire
5. Jule - Bridgend
6. Helen - Carmarthenshire (Llanelli side)


----------



## Queenie1

Funding meet

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent
3. mimi - pembrokeshire
4. kara - pembrokeshire
5. Jule - Bridgend
6. Helen - Carmarthenshire (Llanelli side)
7. Queenie - Gwent ( abergavenny area)


----------



## josiejo

Funding meet

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent
3. mimi - pembrokeshire
4. kara - pembrokeshire
5. Jule - Bridgend
6. Helen - Carmarthenshire (Llanelli side)
7. Queenie - Gwent ( abergavenny area)
8 Josiejo - Gwent (newport)


----------



## josiejo

Just to let you all know, I called the clinic today and was told there will be a meeting on 6th July where hopefully everything will be finalised.  As they are currently booking planning appointments for September I have now lost all hope that there will be any 2nd free cycles this year,


----------



## julespenfold

Thanks Jo, That looks promising that they are having a meeting but I wont hold my breath


----------



## kara76

thanks for the update


----------



## sian5038

Hi, just adding myself to the list..

1. Julespenfold - Gwent (Newport area)
2. Sam76 - Gwent
3. mimi - pembrokeshire
4. kara - pembrokeshire
5. Jule - Bridgend
6. Helen - Carmarthenshire (Llanelli side)
7. Queenie - Gwent ( abergavenny area)
8 Josiejo - Gwent (newport)
9. Sian5038 - Cardiff (happy to go 30-40miles either side)


----------



## Jule

Look in western mail I done another interview yest bout donor and I'm in there and kara is


----------



## SarahJaneH

Good on you Jule and Kara, just read it online


----------



## ebonie

Oh well done jule and kara    how can i find it online ? If i had seeen this earlier i would have bought the paper xx
Can someone send me the link please xxxx


----------



## Jule

http://www.walesonline.co.uk/showbiz-and-lifestyle/family/family-news/2010/07/02/cost-of-fertility-treatment-in-uk-a-key-factor-for-couples-going-abroad-91466-26770230/

Here is the link to the article


----------



## ebonie

Thank you Jule i just read it now good article Hun     well done xxx


----------



## jk1

well done Jule...its a nice picture of you and DH too

Jo xxx


----------



## kara76

the petition was discussed yesterday

http://www.assemblywales.org/bus-home/bus-committees/bus-committees-other-committees/bus-committees-third-pc-home/bus-committees-third-pc-agendas.htm?act=dis&id=189653&ds=6/2010
Action
The Committee agreed to:

Write to the Minister for Health and Social Services seeking further details on the implementation of the IVF policy and requesting an update on prioritisation of patients waiting to be re-assessed along with confirmation of the maximum waiting time.

http://www.assemblywales.org/bus-home/bus-committees/bus-committees-other-committees/bus-committees-third-pc-home/bus-committees-third-pc-agendas.htm?act=dis&id=189923&ds=6/2010

/links


----------



## kara76

i have sent some of my views into the assembly

its all gone very quite yet here i am still fighting


----------



## julespenfold

Apologies for the absence been a bit manic at home.

Well done Jule on the article

Thanks for the update Kara I'll have a good look when I get in.

I think Jo posted that the clinic were having a meeting today to discuss the 2nd funding has anyone heard anything yet?

Once we have that shall we set a meeting date to discuss our next steps?


----------



## julespenfold

Just had an email back from Cynthia (AM -Angela Burns support staff) it is a positive email and thought some of the points will be of interest to you all

"I have been in touch with the University Hospital of Wales in Cardiff, to try and find out the reasons for the delay in second cycle IVF treatment. I have been informed that the funding is in place, however, the logistics of treating the second cycle patients alongside the first cycle patients is still in the process of being worked out. It is going to be at least another week before this will be understood, but then it will be all systems go. I cannot as yet tell you where you are on the waiting list or give you an approximate date when you would receive treatment. 
However, I was told that Singleton Hospital are already in the process of delivering second cycle IVF to their patients. I have given Singleton a call and have been told that if you would like to transfer to them, you would be seen almost straight away."

I have my planning appointment on 22nd July so I am going to see what the clinic say on that day before making any final decision. She also said that there is a procedure to follow to transfer but she belives it is fairly straight forward.

Its seems there might be light at the end of the tunnel!


----------



## kara76

angela burns is brill isnt she

lets hope that clinic get going now


----------



## julespenfold

Hi Guys

Though I would post the news here before going onto the Cycle board.

Just been for my planning appointment and I can use the second funding yey!!

Not sure if this is because of getting the AM involved or if its a general thing, I just asked and the nurse said she already checked and I was allowed the NHS go. 

Being pushy obviously works lol

Big thanks to all the campaigning done by Kara, Jule and the others as I wouldn't be having this cycle without all their hard work.

Hopefully those of you waiting will now get your funding too, remember you just have to ask!

Jules xx


----------



## Queenie1

this is great news jules.   

hopefully we will all be able to get started on our 2nd goes. 

congratualtions jules


----------



## kara76

brill news and about time too


----------



## SarahJaneH

That's great news Jules! 

Hopefully everyone waiting will get their second go now


----------



## josiejo

Well I did get excited so have spent the morning trying to get through to the clinic. Finally got through at 11.30 and was told that they are still not taking bookings and they were investigating why people have been told that there next cycle will be NHS which seems a little silly really.  She said they now have the funding secured and are currently working out how to call people in. I am sure that is what I was told the meeting on the 6th July was about. 
Decided that we are going to book a planning appointment and hope that we can have it transfered to NHS cycle.  At least this way we will be in the system.
They are apparently calling me back to arrange the appointment as she couldn't get through to reception but they sounded so busy I won't hold my breath for the call back today.


----------



## julespenfold

Hi Josie - They may not be taking second funding planning appointments yet. However I booked my planning appointment ages ago when everything was still up in the air. When booking I told them at the time that it would be either Self Funded or NHS depending on the funding issues. They originally booked it as Self Funded and this was changed when I got there yesterday to NHS I was quite surprised they let me have it on the NHS. 

If I were you I would ring reception rather than wait for a call back and book an appointment ASAP as a Self Fund/NHS but just be prepared to cancel or self fund if there are any problems. 

It may have been writing to Angela Burns and getting her to fight my case for me that bumped me up the list too so that is also worth a go for all you ladies waiting. I was also told I could change clinics if IVF wales couldn't accomodate me.

I hope others get there funding too, it would appear that there are still some issues at clinic but at least they have started.


----------



## josiejo

Thanks Jules, 

I was just very disappointed as I got very excited after reading your news. We are going to book a self funding appointment in hope that it can be changed to NHS.

It was the reception number I was calling all morning but a nurse ended up answering. She did sound rather stressed and said they were short staffed and that she would get someone from reception to call me back. I will call on Monday if I hear nothing today.

It is certainly a good thing that the clinic have finally started, I am just finding this all very frustrating as different people are getting told different things right back to the questionaires that were sent.

Sorry I sound a proper moan, I am very thankful that there is a chance of a 2nd cycle, its just the waiting and not knowing anything that sends you a little mad.


----------



## julespenfold

Good luck with booking your appointment Josie let us have the date and we'll add you up on the cycle list.

Feel free to moan I know how frustrating this whole thing is, we were kind of resolved to the fact we were only going to get another go if we paid so this was a lovely surprise for us.There are a couple of us now that have got the NHS funding this way so hopefully you will to xx


----------



## kara76

josie i am sure it will all be ok, if they are allowing people to have there second cycle there is no reason yours wont be

i would be ranting too lol


----------



## PixTrix

Hi Josie, sorry that you didn't get this sorted, you are not alone I had the same probs as you, but it was the receptionist that I spoke to who refused to make the appoint and told me to talk to the nurses about it. Marie told me to speak to reception again and just book a planning appoint without saying it NHS, but she said that the admin team had gone home and ring next week and this was before midday! So like you will make an appoint in the hope that it can be transferred to NHS!


----------



## Crystal10

Thought 2nd IVF candidates might be interested to know.....
I heard about the 2nd IVF go in Wales, I was at IVF Wales Cardiff & couldn't get much info out of IVF Wales. I rang London Womens Clinic Swansea & they seemed to be on the ball & that 2nd go would start within the month. I decided I didn't have anything to lose by trying out a different clinic. I elected to transfer to London Womens Clinic Swansea in April - I had my appointment straight away & have already had my IVF treatment!!!(and it worked  !!!). Much, much,much more efficient in LWC Swansea. Please note though that i read somewhere that LWC may be losing their NHS funding _next _year though so if you can transfer - do it quickly. All LWC Swansea asked was that I ring IVF Wales & ask them to fax through my NHS details & blood results ( i did have to ring them a few times as they kept saying they'd forgotton!!) & then I just rang swansea to make sure they'd had the fax. Next thing I knew I had a consultation appointment & was told I could start treatment that month! Easy.


----------



## josiejo

Congratulations Crystal. And thanks for the tip, it has given me another possible route now. I have emailed them today to see if they are still able to do that.
I think the clinic must be at breaking point with staff again today, now when it isn't engaged I am getting a message saying 'the other person has cleared' on the reception number. I can't find the nurses number to give that a try. I am off on hols tomorrow and have my sister arriving later on today so really wanted this sorted out. I keep hoping that they will give me that call I was promised on Friday but I doubt very much I will be getting it.
Its such a shame that there are these problems as I really like the staff there and don't want to be mad at them lol


----------



## SarahJaneH

Congrats Crystal!

Josie, just sending you a pm with the nurses number - hope you can get to speak with someone, good luck


----------



## PixTrix

Huge congratulations Crystal that is great news and you give us all hope. 

Did you manage to get through to the nurses Josie?
I rang the nurses number who gave me an alternative number for reception which I will PM  you. I then got put through to Stephanie and I have booked a self funding appointment for October. She asked if this was for NHS and I said well if I can book my second NHS then yes and she said no. So I asked could this be transfered to NHS at later date and she said yes that is what has been agreed can happen. I then went on to ask exactly where they are at with the second NHS and she said that all funding release and contract signed (yes we know that!) and they are still waiting for NHS Wales to agree how they are going to deal with sending out the appointments - if it is going to be age relevant etc. If NHS Wales had dealt with this in the ample time that they had prior to the release in April they could be almost four months into dealing with the waiting list lol


----------



## kara76

crystal congrates

ok this takes the **** now, why does LWC have the funding all sorted and ivf wales have not! i dont think its down to ivf wales more hospital management. i have had alot of dealing with stephanie and she is brill

i cant see any reason why your appointment wont be changed to nhs


----------



## PixTrix

Hi Kara, thanks for hanging in  here with us :O) Soz not sure my post was clear. The funding and everything is sorted, they are just waiting to be told how to deal with handling the appointments eg are they going to send out according to age etc. So they just need to know who will be having appointments first. I have got to say that if there is going to be a delay that could make my lap a waste of time, in that any work could undo itself I am goig to consider LWC swansea as an NHS. Or go with what my heart and head is telling my and just follow the fab Lyndon. Decisions, decisions!


----------



## kara76

pix i think having your cycle soon after your lap is wise, i had my lap in march and tried to cycle but things keep going wrong with abandoned cycles so ended up cycling in july/august and all was still ok inside and my ovary was reached, you have to consider alot of things. depends on what your heart is telling you?


----------



## julespenfold

Thanxs Pix, that explains why we got our funding when we had our planning appointment as they have the money just not worked out who is where on the list.

LWC have had their stuff sorted since April and I was gonna transfer if they said no to my NHS go with Cardiff this time.

Will keep my fingers crossed that when you get to your planning they let you convert to NHS as if they have the money I would say there is no reason you cant.

Josie - I hope you got your planning appointment sorted so that you have a date to work too.

Crystal congratulations and wishing you all the best x


----------



## Queenie1

pix glad to hear you have an app. 
i am finding all this very frustrating how other clinics are taking 2nd nhs app when ivf wales are unable to. i understand it is not the clinic itself. 
i agree with you pix in once i get a lap date i will be really looking as to where i can have my second go.

does anyone know to have the 2nd nhs go , does it have to be at a nhs clinic could it not be transfered to a clinic(private) who have the space to deal with patients. ivf wales just seem to have such a big demand its a pity we could not all transfer to other clinics easliy to ease the waiting list.


----------



## kara76

queenie it can only be at a cycle funded by the nhs eg ivf wales or lwc


----------



## PixTrix

Its a tough one Kara. I think I will want to commence tx no later than December, earlier if poss. If it works obviously ecstatic, if doesn't work then that allows time to have another tx within recommended time after a lap. So if NHS is available within that time, that is fab, but if have to wait longer go to CRMW. I have so much faith in Lyndon, I am working out in my head whether just to go with CRMW straight away! 

You'll soon be at the starting post Jules, thanks for keeping us updated I am reasured that it is likely when go for that planning appoint it can be transferred to NHS.

It really is frustrating Queenie. I think the only option of a private clinic would be LWC Swansea, but that is being withdrawn next year.

I think that waiting lists will start to go faster at NHS Wales because I think there are going to be alot of self funders following Lyndon and there are ones that have managed to get their tx transferred to LWC. So I think it will take some time, but I think the wait at IVF Wales will get shorter


----------



## kara76

ladies bbc radio wales need out help

Ideally a couple in Wales still struggling to conceive, especially if it’s because of probable male difficulties, and to get funding from their local health board for a first, let alone second, free cycle of IVF – who would be happy to explain their journey, anonymously if necessary, to myself and our presenter (a retired female surgeon) while I hold a microphone to record the interview. 

anyone want to do it?i cant for obivous reason!


----------



## josiejo

Thanks for the PM's today with other numbers to try. Unfortunatly we had no joy in speaking to anyone, beginning to think my name flashes up when I call so they don't answer lol DH tried as well and has left a message asking for a call back. He is going to try tomorrow again as it seems it is definatly going to be worth the effort.

Kara, I would offer but DH doesn't even like me speaking to my best mate about it all never mind the radio.

Off to Cornwall with my sister and niece in the morning but may try calling from the car on the way.


----------



## Queenie1

sorry kara will be unable to help as we go on hols tomorrow. hope someone else is able to.

josie hope you get through and get an app soon. have a lovely time in cornwall


----------



## PixTrix

Hi Kara, is this a specific issue for someone who hasn't managed to get funding for their first IVF?


----------



## Sam76

Hi Kara

I wouldn't mind speaking to radio but we haven't got mf issues and have had first cycle so don't think I'm right for this one.

Hope all's well with you.

Sam xxx


----------



## julespenfold

Hi Kara

Not one for us this time, hope you find someone

Jules x


----------



## kara76

pix if your willing i can give you details for contact, totally up to you


----------



## josiejo

Just to let you know, I managed to make an appointment on the morning we were heading off on holiday. They also returned the call I had been promised so they are back in my good books now lol Time for the hard part now of losing all the extra weight I have put on especially while away.


----------



## PixTrix

hey Kara, soz didn't get back to the earlier post, been loads going on so been a bit hectic. Did anyone do it in the end


----------



## kara76

yeah looks like im gona be the one doing it again as we cant find anyone willing to talk which is such a shame as we were hoping to find someone still struggling to get the dream!


----------



## mimi41

Thats a shame Kara, have you asked Sam or Jules they are good at things like this


----------



## sian5038

Hi Crystal and everyone else,

I don't know whether you are able to offer any advice but I also tried the 'transferring to Swansea route' and was told I needed to get Cardiff to fax confirmation that they are happy for me to trans to Swansea as well as confirmation that I had been authorised the funding...of course when I called the agency that arranges the funding Cardiff haven't sent anything through to them as yet as they are still considering who is eligible and how they are going to sort the criteria.

Am I missing something or should I get onto Swansea/Cardiff again? 
I have sent Cardiff a letter stating my concerns and request to be transferred by them and for them to confirm to Swansea that they have said I would be eligible for a second attempt but haven't heard so far (was about a month ago so not holding out much hope really) -  it all seems a bit chicken and egg to me..  

Also, are all the ladies here on 'the list'? I remember back in Jan when I had my post IVF chat with Janet Evans I put my name in a little black book of potential second time IVF'ers..does anyone know if that list still exists and if it is at all relevent now?

Thanks,
Sian.
x


----------



## sian5038

Hello - quick update.. I phoned IVF Wales last week and they confirmed all is go. The names are down for treatment (I was on it - yeah!!) and that it was still 40yr olds first. I also called the WHSSC to check if my name is down for funding which it is and is being reviewed this week so I should know soon enough if I can trans to Swansea - if not then I just need to be patient and wait for next March (ish)...its all good! x


----------



## kara76

Hiya all

Thought I would give a little update. In december I sent a letter to the welsh assembly after they contacted me about anyone finding it hard to access the 2nd cycle of ivf on the nhs if they were eligable, anyway I wrote to them after no one came forward and suggested they need to know look at increasing the number of cycles to 3 as the 2 funded still fall short of the nice guidelines, this will be brought up in a meeting next week. 
I think maybe come april we need to fight again for full implemention of the nice guidelines


----------



## Queenie1

count me in kara i will help. just let me know what i can do.


----------



## kara76

Great

Plan is too see what is said at this meeting then go from there. I'm still in close contact with my am who will help no end

Thanks queenie


----------



## jo1985

wow kara that would be great ill try to help x


----------



## jk1

Kara, let me know if there is anything i can do to support xx


----------



## Sam76

Not sure how things will be looking for me in April, but if I'm able to do anything to help, I certainly will


----------



## julespenfold

More then willing to help as much as I can

Jules x


----------



## PixTrix

Count me in!


----------



## Swans72

Hi,  I'm pretty new to all this, I underwent my first IVF treatment in November at IVF Wales which unfortunately was a BFN  

My main reason for joining you lovely ladies was to say to Kara if there's anything I can do to help with getting a 3rd cycle through the NHS then i'm willing to help as i'm sure my AM will be as well.

I'm not very good at keeping up to speed with what's happening to me, although I love looking to see what everyone else is up to so i'll apologise first hand with that (i'll try and do my best though  )

x


----------



## thunderstix

Kara, i have just undergone my 1st icsi treatment which ended last tuesday after only 1 egg was collected which didnt fertilise 
i have a follow up appointment in april & have applied for 2nd cycle.
will do anything needed to help get getting 3rd cycles funded as well x


----------



## kara76

page 4 
http://www.assemblywales.org/bus-home/bus-committees/bus-committees-other-committees/bus-committees-third-pc-home/bus-committees-third-pc-agendas/pet_3_-3-11_papers-e.pdf?langoption=3&ttl=PET%283%29-03-11%20%3A%20Paper%201%20%3A%20New%20Petitions%20and%20Updates%20to%20Previous%20Petitions%20%28PDF%2C%201-91MB%29%20

we have a few options here

if we were to do another petition i feel we would have to get more sigs than before! or we do a demo type thing......Anyone with any ideas pop them here

/links


----------



## binkyboo

Kara, you can count me in for whatever I can help with x


----------



## Swans72

Kara I really wouldn't know the best way forward, what seemed to work the best last time round? Whatever I can do to help though I will x


----------



## Queenie1

kara could we do both a petition and a demo or would that be too much to organise. if we did petition again perhaps we could do 2 days at the hospital.


----------



## Digby

Hadn't spotted this thread til just now but am also happy to offer help in any way.

D
xxx


----------



## SarahJaneH

Hi ladies

I bought She magazine yesterday and there was an article aout the IVF postcode lottery. The magazine has got a petition going on this issue - nice to see some positive action from the media about IVF. I know England and Wales deal with health funding separately, but its all the same issue. Here's the link:

http://www.allaboutyou.com/diet-wellbeing/she-fertility/event

/links


----------



## kara76

Thought I would update this thread

I have a meeting on the 2nd dec with my am regarding a new petition for the implemation of the full 3 cycles.

I will be needed all the help possible


----------



## Jule

Count me in again kara.might be able to get media involved too as I'm still in contact with the reporter in media wales from when me and stu done our interview on the twins


----------



## jo1985

Count me in ill do wat i can Xx


----------



## Queenie1

and me will do what i can to help.


----------



## Sam76

let me know if there's anything i can do


----------



## PixTrix

I'm with you


----------



## ammiebabes1920

Kara count me in hun xx


----------



## newmum

Anything I can do, let me know?

x


----------



## Hope082

in my 2ww testing monday 3 sept and this was my 2nd nhs go x


----------

