# IVF FUNDING



## kara76 (Dec 14, 2004)

ok girls

i want you all to write to your mp's and the welsh assembly

this is a letter i have just sent to my mp's, yep all of them. You are all welcome to use it. I will also post a copy of my othr letter once i have an mp on board. I am of course hoping i will get more funding yet if i don't at least i could help someone else

Dear Alun Davies, Nerys Evans, Nicholas Bourne and Joyce Watson,

I am writing concerning the possibility of gaining your help in getting the local health board to implement the NICE guidelines 2004 for IVF treatment.

http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/DH_087134
This link would be helpful, as I am of the understanding that all PCT/LHB have been contacted and pressure is now being put on them to implentment these guidelines

I myself have had 1 cycle of IVF on the NHS and have also funding other cycle yet this treatment is very expensive privatey.

I would really appreciate help you can offer

If you need any personal information that would help this matter I am willing to provide this and i am already drafting a letter which i will send to the welsh assembly, would you like a copy?

Many thanks

*Removed for privacy*



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## kara76 (Dec 14, 2004)

wow a reply

Hi Kara,

Thanks for this.

Please let me have some background. Either by email or by post to the National Assembly.

All the best,

Alun

better get my full letter done


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## kara76 (Dec 14, 2004)

Dear Sir,

I am writing to you with some hope that we may gain funding for further IVF treatment, under the NICE guidelines 2004.

I believe we meet the criteria set out by NICE, which are:

We are a heterosexual couple.

1. I am within the specified age range.

2. We are both non smokers.

3. Our BMIs are within the required healthy range.

4. Neither of us have ever had a child.

5. IVF is our only hope of conceiving.( this is not in the criteria)

I understand decisions can only be made based on the information available to you, therefore I aim to provide you with the facts.

We have been together for over 11 years and have been married for 4 of these. We began to try to conceive at the end of 1997 and after a considerable time of being unsuccessful we asked our GP for help who then organised various tests and a drug called clomid.

After numerous tests and investigations we were referred to Cardiff Assisted Reproduction Unit (now IVF Wales) for IUI treatment, and after 25 months on the waiting list we had our initial appointment. During the wait, in 1999, I was treated for abnormal cervical cells and was assured this would not impact on my fertility.

After 2 IUI treatments it was discovered that my fallopian tubes were blocked and infected, which in turn were then removed and clipped hence IVF is our only option of conceiving. It was also discovered I had Fitz Hughes Curtis Syndrome along with Endometriosis, which again was missed until my second first laparoscopy. We have already had 1 cycle of IVF funded by the NHS and funded multiply treatments ourselves, 2 of which have resulted in early miscarriage. Any help with funding could well mean that we will one day be parents.

IVF treatment should be made available to people experiencing infertility as this really is not a life style choice.

I am currently helping my clinic set up a patient support group as in my area as with others (Pembrokeshire) there is a severe lack of help and support.

I am of the understanding that the NICE will not review there guidelines until 2010/2011, yet PCT's should now be implenting these guidelines as Eastern England have now acheived.

If you require further information I am very happy to give details such as dates and what test we have undertaking.

Yours sincerely

*Removed for privacy*


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## miriam7 (Aug 8, 2007)

well done ...good you had a reply so soon


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## popsi (Oct 11, 2007)

kara.. excellent huni.. i off work on friday so will look who i can send mine too <even tho i've given up on tx i will do it for everyone else>xxx


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## kara76 (Dec 14, 2004)

http://www.writetothem.com/

try this girls

lets make our voice heard

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## kara76 (Dec 14, 2004)

i now have 2 AM's on board and one is contacting the local health board today!!(so they say)


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## Queenie1 (Aug 21, 2008)

thats great news kara well done to you for doing something about it. can't believe what your friends said to you. we didn't choose to be infertile but people do choose to smoke,


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## kara76 (Dec 14, 2004)

i know my friend is a disgrace


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## ANDI68 (Aug 17, 2007)

As you know Kara, I think it's a great idea.  At the moment I am waiting for a reply for my AM and MP concerning my drug funding battle and don't want to complicate or jeapordise this decision by bombarding them with more letters, therefore I will wait until they have made a decision (whenever this    is) before I do anything else.  

As you're aware the NICE guidelines have an age limit, which by the time I get any response will have lapsed for me but I will help to support the cause for the rest of you.

I'm not holding out much hope for my funding and the upper age limit is drawing closer for me now  

Good luck with all your letters girls.

Did you look into that petition Kara?


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## kara76 (Dec 14, 2004)

i recieved this from my local health board

Thank you for your email message yesterday.

IVF is the responsibility of Health Commission Wales and I have included a link to their site below:

http://new.wales.gov.uk/topics/health/hcw/nhsplanning/specialisedinfertility/?lang=en

I understand that you will initially need to go through your GP but all the referral information is on the link above.

Please do not hesitate to make contact if we can assist further.

Thank you

xxxxxxxxxxxxxxxxxxxxxxxxx

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## kara76 (Dec 14, 2004)

andi

you are way too calm, i would be pushing them hun


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## ANDI68 (Aug 17, 2007)

Well, at the moment Kara they're all on their Summer leave and I chased this up again last Friday.  I'm not calm really but I also feel I don't stand much of a chance, as I'm this far down the line with refusal after refusal.  It upsets and frustrates me that this 'postcode lottery' is happening .... it's so unfair.

My tx has always been the most expensive because of ICSI and Puregon is more expensive than Menopur plus I have the added costs of assisted hatching and have never had anything to freeze so every cycle is a major cost, I would be so grateful for some help towards my drugs

Edwina Hart if you are reading this .... I am begging!!


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## kara76 (Dec 14, 2004)

i think the postcode lottery is a joke


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## kara76 (Dec 14, 2004)

Plaid Cymru have been in touch and we are gona set up a meeting to diccuss the way forward with this


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## ANDI68 (Aug 17, 2007)

Is your AM Plaid Cymru Kara?


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## kara76 (Dec 14, 2004)

the one who wants to meet is

i wrote to them all, well at least this way they can all fight for us. well thats the plan


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## Mandamae (Oct 17, 2007)

Wow Thanks I'm going to try it myself.

Manda xx


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## ANDI68 (Aug 17, 2007)

That's great Kara, you must be so pleased.

Maybe you could write to mine about my drugs, I had to write twice before I even got a reply


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## kara76 (Dec 14, 2004)

that is digusting, did you use the website...write to them or something like that?

im really looking forward to meeting with them, i might even get the media involved


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## ANDI68 (Aug 17, 2007)

I emailed via their websites initially then I wrote to them after a week when I didn't get a reply, and was told by one that he hadn't received my email ... yeah yeah and my writen letter must have prompted the other one to reply to my email.  To be honest Kara, this has been my experience all along and I'm a little worn out with it all.  It's been a week since I last emailed to chase things up, and yep you guessed it, I haven't had a reply again so I may just email the minister direct who I'm waiting for a reply from via my AM.


Would they be happy to meet with the media involvement?


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## kara76 (Dec 14, 2004)

http://www.writetothem.com/

that is the website i used

funny enough i didn;t get any reply to my letter when i emailed an am direct either, so i used this and sent it to them all

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## kara76 (Dec 14, 2004)

super quick post before i leave for skidding in somerset

girls i have received this

I was passed a copy of your email to the Health Enquiries address about
funding for IVF Treatment. I am responsible for planning these services,
and if you have any specific queries I would be happy to try to answer
these for you.

If you would like to contact me and let me know the precise nature of
your query about funding I will do what I can to help.

Best wishes


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## miriam7 (Aug 8, 2007)

who hoo i bet you have replied already


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## ANDI68 (Aug 17, 2007)

I'm glad someone is listening to you Kara, I'm having a nightmare of a battle with not much hope of getting any help as apparantly I'm a 'special case'


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