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  • "Kel 28" started this thread

Posts: 106

Reg: Apr 20th 2008

Location: Bolton

Children: None yet

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1

Monday, February 22nd 2010, 8:37pm

Refused Appeal

Hi



I was wondering if anyone could give me any help or advice?.......



We recently had our 3rd failed IVF in November. As I live in Bolton we only get one attempt on the NHS and have had to self fund the other two attempts.



As we now have no money, I went to our GP in December to appeal against the decision of only having one attempt, and our GP put our case forward including the cost of remortgaging, people getting 6 attempts in the East of England and even 3 attempts on the NHS 7 miles up the road.



We then recieved a letter stating:



"Under the terms of the assisted conception eligibility criteria which form part of their Effective use of Resources policy, once a couple havehad three cycles of IVF, they will not fund any further treatment, regardless of the source of funding for those three treatments."



"The panel members discussed the case, but ere unable to find any evidence of clinical exceptionality and, as a cosequence, the request must be denied."



I then found out last week that they are now planning to offer people 2 attempts starting in the next 6 months in Bolton.



I am so angry and feel like I want to take this further........ (I have only got until 7th March to get the letter back to them!)



Why were we at any point never informed that there was an appeals policy in place? Do they really think we would remortgage our house TWICE to pay for it ourselves if we knew that there was a chance to appeal? How many people have had IVF number 4 work and we are having that chance just snatched away from us........(I have been frantically searching for some stats to help!) and now two years down the line are, we being discriminated against by only having had one attempt, yet Joe Bloggs will now get two attempts.



Has anyone got any advice for me....... I am getting more and more angry by the day! :cross: :cross:



Thanks

Kel XX
Ist ICSI MAY 2008 - :BFN: - NO FROSTIES

2nd ICSI FEB 2009 - :BFN: - NO FROSTIES AGAIN bab12

3rd ICSI NOVEMBER 2009 :BFN: NO FROSTIES AGAIN bab18 - Where do we go from here.... I don't know.... :tear:


:xxx3:

Indiechick

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Posts: 5,851

Reg: Oct 25th 2007

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2

Monday, February 22nd 2010, 9:16pm

Hey Kel

So sorry to hear how frustrating all of this is. I don't have any specific advice with regards to your area but I did argue until I was blue in the face with my PCT until they finally agrees to fund one round of IUI. I went to two appeal panels and eventually did prove that our situation was indeed exceptional.

I found when I was writing to them they responded much better to a formal business style letter that stated facts and figures and stayed away from the emotional side of things. Unfortunalty to them we are just a faceless person, they cannot allow them selves to feel the pain and sadness we feel as they have to make appropriate and fair decisions and not be swayed by emotional content. Therefore I would keep you letter clear and concise, with specific headings and as many facts and figures for similar cases that you can find.

I know how annoying/frustrating/upsetting this is and so sending you a huge hug [zx127]


3rd IUI - 08/08/08 - tested 22/08/08 BFP :D
Scan 09/09/08 - 2 [zx076] [zx076] TWINS!
2 beautiful boys born 16/04/09

Calypso

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Monday, February 22nd 2010, 9:35pm

Hi Kel
I live in the East of England, and they changed the policy from one to three cycles of treatment AFTER our first attempt.

In theory, our treament was finished after our first attempt, and we were "out of the system". We thought we would have to be re-referred and go back on the waiting list etc etc to then access further treatments. This was a nightmare for us, as I was 39, and the cut off point for funded cycles was aged 40. HOWEVER, after many emails to the PCT and liason with our satelite clinic, we managed to get back into the system and we had two further (unsuccessful) cycles of treatment.

I would advise you to really fight for your second further cycle. You, like other patients in your area, are entitled to a further treatment cycle, providing you meet the criteria (usually based on age and FSH level). Just because you have funded other cycles of your own, should not preclude you from your rightful quota.

Go for it hon ... you've got nothing to lose. Your area is not the first (and hopefully won't be the last) to up its services, and people caught in the middle of this change-over - between treatments, are often over-looked.

Incidentally - just for the record - East of England patients get three *fresh* cycles OR a maximum of six embryo transfers.

Good luck xxxx





Life is not about waiting for the storm to pass, but about learning how to dance in the rain



Jan 08 Fibroid removed. May 08 IUI - BFN :sadface:
Nov 08 IVF 7 eggs (just one fertilised :sadface: - BFN
May 09 ICSI 1 - 7 eggs (two fertilised) BFN :sadface:
Aug 09 Another fibroid removed
Nov 09 ICSI 2 - 1 mature egg (it fertilised) BFN :sadface:

My journey is now over

This post has been edited 1 times, last edit by "Calypso" (Feb 22nd 2010, 9:37pm)


Sun Flower

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Monday, February 22nd 2010, 10:56pm

Hi Kel

I am sorry you are facing this horrible time fighting for what others are being handed on a plate, I totally understand, we have self funded 2 cycles and are now fighting for a free go, but not holding out much hope

I dont have any great words of wisdom or advice, but i wanted to wish you lots of luck. Have you thought about lobbying your local MP, I know others have done this and they have written a support letter to the appeal panel, also sound advice from Indie re: stats and business manner, we are just a number to them and emotions stay out of the boardroom, where these "very important people"!!! make decisions and decide the future of our lives! it makes me so mad

keep us posted hun xxx

  • "Kel 28" started this thread

Posts: 106

Reg: Apr 20th 2008

Location: Bolton

Children: None yet

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5

Friday, February 26th 2010, 6:35pm

Hi Girls

Thank you for your advice....... I wasn't going to bother appealing as we recieved the initial appeal refusal letter on Christmas Eve! (Perfect Timing as always!)

Anyway, after getting angry about hearing of the two attempts now being offered and listening to your lovely views and advice, I have decided to go full staem ahead.....

I have used the template letter from the Infertility Network UK wesite (Thanks for the linkt to that Eeore!) and am just going to add a few little bits of information and then send it off.....

Fingers crossed...... I will keep you posted...

Thanks again...... Kel xx
Ist ICSI MAY 2008 - :BFN: - NO FROSTIES

2nd ICSI FEB 2009 - :BFN: - NO FROSTIES AGAIN bab12

3rd ICSI NOVEMBER 2009 :BFN: NO FROSTIES AGAIN bab18 - Where do we go from here.... I don't know.... :tear:


:xxx3:

Indiechick

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Posts: 5,851

Reg: Oct 25th 2007

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Friday, February 26th 2010, 6:46pm

You go girl!!!

Keep us updated x


3rd IUI - 08/08/08 - tested 22/08/08 BFP :D
Scan 09/09/08 - 2 [zx076] [zx076] TWINS!
2 beautiful boys born 16/04/09

  • "Kel 28" started this thread

Posts: 106

Reg: Apr 20th 2008

Location: Bolton

Children: None yet

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7

Wednesday, March 17th 2010, 12:35pm

Well....... Got my letter back from the PCT and guess what............ It's been refused! Oh what a surprise!

Had the usual...... As you have already had 3 cycles (including 2 paid for by ourselves! and not them!), and there were no exceptional circumstances, we have no alternative but to refuse your appeal.... Blah Blah.......

I am kicking myself for self funding the last two now as that seems to be their main arguement!...... And what they class exceptional circumstances to be I don't know! Is condemming a woman to a childless life not Exceptional enough??!!!

I can't believe that at 30 years old my journey is now over and I will never have a child...... I am off now to throw myself into my job and carry on just EXISTING in this sad, mundane life I now have! I have no more energy left to fight.....

Thanks for all the support you have given me........ I couldn't have got through the last 5 years without it....

Kel

XXXXXXXXXXXXXXXXXXXX
Ist ICSI MAY 2008 - :BFN: - NO FROSTIES

2nd ICSI FEB 2009 - :BFN: - NO FROSTIES AGAIN bab12

3rd ICSI NOVEMBER 2009 :BFN: NO FROSTIES AGAIN bab18 - Where do we go from here.... I don't know.... :tear:


:xxx3:

Posts: 935

Reg: Jul 26th 2007

Location: Middlesex

Children: Yes please!

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8

Wednesday, March 17th 2010, 1:23pm

Oh Kel
I am so sorry to hear you lost the appeal to get any more funding. Could you save for a while and then do it again or are you just fed up with it all.??
Take care of your self hun and maybe you just need some time out to your selves.
xxxxx :cuddle
TTC 2002.
1st icsi BFP 4th Dec 07.Twins! Miscarried!
2nd icsi BFN July 08
3rd icsi BFN Dec 08
4th FET BFN Aug 09
5th icsi BFPJan 2010
http://lb1m.lilypie.com/Ya1o.png

Sun Flower

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Wednesday, March 17th 2010, 5:18pm

Hi Kel

I am so sorry you got turned down for funding [zx127] I can understand your anger. we are still waiting to hear, although I had an email from them yesterday saying they were ` looking into it` I feel deep down that it will be a No for us too. Its heart breaking isn't it?

If money is the main reason for not being able to carry on (like us) then have you considered treatment abroad? Just another option?? I was looking into this last night and found some fab sites with very cheap prices - Hungary being one of them, IVF packages for approx. £1,400 (seriously much cheaper, even when you add on flights, accomodation etc..) it is certainly something which we are considering for the future if the nasty horrible PCT say no.

you have lots of think about hun, but for now, take some time out for you and your DH, enjoy each others company and plan for the future together

Seems we are in a very similar situation so if you ever want to chat / rant please feel free to PM me

take care xx

Indiechick

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Posts: 5,851

Reg: Oct 25th 2007

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10

Wednesday, March 17th 2010, 5:47pm

So sorry hunni, [zx127]

x


3rd IUI - 08/08/08 - tested 22/08/08 BFP :D
Scan 09/09/08 - 2 [zx076] [zx076] TWINS!
2 beautiful boys born 16/04/09

  • "Kel 28" started this thread

Posts: 106

Reg: Apr 20th 2008

Location: Bolton

Children: None yet

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11

Saturday, March 20th 2010, 11:42am

Thanks for the replies Girls........

I am just plodding along and wodering what to do! I am too tired to fight them any more, however my mum and her best friend who has had IVF have taken the letter and are putting something together to take it further! I just cannot face it any more.........

Thanks for your support......

Kel XXXXX
Ist ICSI MAY 2008 - :BFN: - NO FROSTIES

2nd ICSI FEB 2009 - :BFN: - NO FROSTIES AGAIN bab12

3rd ICSI NOVEMBER 2009 :BFN: NO FROSTIES AGAIN bab18 - Where do we go from here.... I don't know.... :tear:


:xxx3:

    United Kingdom

Posts: 267

Reg: Nov 15th 2009

Location: Folkestone Kent

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12

Monday, March 22nd 2010, 8:48pm

Hi sweety.

I am so sorry to hear all that you've gone through recently.

Keep going as long as you can or want to.

I really wish you the best.

BIG HUG x x x



Calypso

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Monday, March 22nd 2010, 9:56pm

Oh Kel hon :cuddle
I'm so sorry. But I do think it's good that you fought on - it's better than wondering "what if".
I'm glad to hear you've got your mum and her friend fighting your corner for you - that sort of support is invaluable.
Try to keep positive hon, and try to focus on yourself/selves and what future steps you can take.
Sending you big hugs and thoughts :xxx3:
xxxx





Life is not about waiting for the storm to pass, but about learning how to dance in the rain



Jan 08 Fibroid removed. May 08 IUI - BFN :sadface:
Nov 08 IVF 7 eggs (just one fertilised :sadface: - BFN
May 09 ICSI 1 - 7 eggs (two fertilised) BFN :sadface:
Aug 09 Another fibroid removed
Nov 09 ICSI 2 - 1 mature egg (it fertilised) BFN :sadface:

My journey is now over

This post has been edited 1 times, last edit by "Calypso" (Mar 22nd 2010, 9:58pm)


lel

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Posts: 97

Reg: Oct 3rd 2005

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14

Tuesday, March 30th 2010, 4:22pm

Hi kel



Just wanted to send my support at this stressful time. I know only too well how unforgiving the system is. We did''nt get any funding as dh had vas & reversal & has a dd. We waited 18 months for apt at our local hos for new clinic that did sperm washing. When we eventually had the apt(following numerous ph calls chasing the apt) it was an open & slam job of my casenotes and we were sent packing and told have IVF and pay for it yourself. (If I knew now what I did then). I left chocked up with tears and unable to speak.

We did swiftly do 2 ICSI but sadly they never implanted. Its taken me ages to bring myself to get back on that horse and try again.



I know how low and angry you must be quite rightly feeling but give yourself a break and then consider your wider options. You're still young at 30, have you considered egg sharing as its less costly. Is there any overtime with your job at all to help with the cost down the line?



Big hugs



Lel
1st ICSI failed to implant Aug 05
2nd ICSI failed to implant Feb 06
3rd ICSI June 10

Only had 2 eggs (eggs too immature to use)




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