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  • "riddiewoo" started this thread

Posts: 696

Reg: Oct 16th 2010

Location: Crawley

Children: Yes Please !!

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1

Tuesday, March 15th 2011, 9:59am

Help & Advice with PCT Appeal : Refused Final NHS Treatment Need 3 Viable Embryo's at 3 Days

Hi Ladies



Any Help or Advice would be great.



I have just finished my 1st IVF NHS Funded Cycle which resulted in a BFN I did not even make it to my target test date before AF reared her witch like head. (my first cycle was cancelled due to poor response)



Any How to cut a long story short myself and another EZ zone member have become friends whilst on the TTC Journey we are both currently NHS Funded With West Sussex PCT and having our Treatment at The Bridge Centre In London.



We are Both due to start our Final attept in April/May 2011.



There appears to be a small problem with this !!!!!!



Tillymints had her review last week at the Bridge and has been told that she is not allowed her last free go ;(

The reasons are as follows



1. West Sussex has stop funded Treatment



I was of the understanding that if you had started treatment before they suspended funding you could finish your entitlement?



2. Now here is the Git of it all !!! Both Tilly and I are Poor Responders with Low AMH and Low Ovarian Reserve. Tilly and her DH have been told they are also not entiled to their final go as they did not have 3 embryos at 3 Days. They collected 3 from Tilly and 2 Survived for a 2 Day Transfer.



This also puts me in the same category as I had 4 Collected 3 Ferts Lost 1 on Day 2 and had the other 2 replaced on day 3.



So both myself and Tilly are not eligable for our final treatment.



I dont have my review until April but Tilly gave me the heads up yesterday. So I havent been told offically this is this case but I am assuming that it will be.



I have downloaded the West Sussex PCT guidelines and criteria for treatment and cannot see it anywhere in their rules that you have to have 3 embryos at 3 days to qualify for your final treatment.



Surely this is discrimination against ladies with a low ovarian reserve at a relatively young age (33) and I cant see how legally they can implement this?



Tilly and her DH are in the process of appealing the decision at the moment and I will be following in her footsteps shortly, we would love any advise or help that you can offer.



As far as I am concerned I have paid my taxes and worked all of my life and if I we are entitled to 2 cycles of IVF then thats what I will fight for.



Tilly & her DH are in a similar financial situation to myself and my DH although we would love to go private the funds are just not available. The longer we wait the worse our reserves will get and the chances of success will be reduced.



Help and how to proceed with this would be great.





:xxx3:


NOV/DEC 2010 1st IVF Poor Response to Stimms Converted to IUI :BFN: :bawl:

March 2011 2nd IVF BFN AF Arrived 8dp3dt ;(

3rd & Final IVF May 2011





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Maria72

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Tuesday, March 15th 2011, 6:19pm

Hi Allie, I'm sorry you are having to go through this. I don't know if you could win in court. Normally they review in April anyway or they may have added a little 'small print' bit after the first document. Also my understanding is that they would like to remove PCT starting this April.

If appealing doesn't cost much time and money then go ahead. But if you have to pay a lawyer and wait ages, is it worth the stress and money?

You really need to decide yourself. This of the benefits and drawbacks for each option and then make the decision that it's best for you and your DH.
Good luck!

KJ27

Ace

Posts: 378

Reg: Mar 26th 2010

Location: Bedfordshire

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3

Tuesday, March 15th 2011, 6:34pm

Hi,

Sorry to hear about your situation, I work in the pharma industry so I am well versed on the postcode lottery that is PCT prescribing and decision making,

The PCT's are currently disbanding and GP consortiums are forming at rather a fast pace, the purse strings will be held by the GP's.

I believe it is worth finding who the lead GP is in your area for the consortium, you should find this from the internet it is public knowledge and writing them a letter, I would also write to your MP and I was reading an article yesterday in the fertility magazine about how the fertility network were fighting PCT's that were restricting or cancelling funding.

Good luck as knowing the NHS at the moment you will need it but its worth the fight.

KJ

Posts: 112

Reg: Oct 27th 2010

Location: Sussex

Children: 1 beautiful daughter

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4

Wednesday, March 16th 2011, 10:56am

Hi ladies,

just had another call. Story had changed yet again, apparently they have pulled funding for the 2nd cycle. they have not confirmed or found anythign about the embryo rule (woman appears to be kinda clueless) however the letter from the clinic arrived this morning and this is their take on the matter...

The West Sussex criteria is as follows:

Patients may have a second cycle if the first was unsuccessful and the qualification criteria are met. These are; that the first cycle did not result in a live birth and that the patient had at least 3 good quality embryos from the 1st cycle. (4 cell grade 2-3)."

which completely contradicts what the PCT are saying. I'm so confused and so upset. DH has called the clinic and is waiting for the Consultant to call him back because initially the PCT said the clinic should appeal for us. then she said she didn't realise it was our second cycle (which i told them on Friday and Monday, and reminded her that i wouldn't have been at a follow up appointment without something to follow!! i couldnt help it, i am so stressed right now.) and that second cyle funding was definitely pulled!!!! I told her that was a compelte contradiction to what the hospital has said and while they're busy having "crosses wires" my life has been turned upsidedown!

Anyway, she's again going to speak to the director and call me back. this is a nightmare. Interesting what KJ27 said about the consortium though....I'm guessing it must be imminent for West Sussex as although the website states "funding deferred until the new tax year" she says they havent made that decision yet (cutting it a littel fine i think) but I wonder if thats because its unlikely to be their decision in April?? I know thats so many if, buts and guesses, and I'm doing my own head in with it....hopefully it'll be worth it in the end.

i'll keep you posted Riddie, forget work, i'm off to research consortiums!!
xx
Nov/Dec LP medicated IUI - BFN
SP ICSI Jan '11-2xday2 embies -BFN
SP ICSI Jan '12 2 x blasts -BFP!!!!
Scan 7wk [zx076]
Scan 12+3 - all good
bab21

  • "riddiewoo" started this thread

Posts: 696

Reg: Oct 16th 2010

Location: Crawley

Children: Yes Please !!

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5

Wednesday, March 16th 2011, 11:51am

This makes me so angry, it seems that nobody know what is going on. The clinic or the PCT. Keep us informed I will email the PCT and see what they say about my funding maybe we can shed some light. I have to call the Bridge again to let them know the outcome of my test on Saturday even though I already know the answer !!! So I will see what they have to say too !!!


NOV/DEC 2010 1st IVF Poor Response to Stimms Converted to IUI :BFN: :bawl:

March 2011 2nd IVF BFN AF Arrived 8dp3dt ;(

3rd & Final IVF May 2011





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Rachael*

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    United Kingdom

Posts: 2,115

Reg: Sep 22nd 2010

Location: Bedfordshire

Children: Two boys & One girl :)

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Keep growing little baby :pray:
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Wednesday, March 16th 2011, 11:59am

I wish you all the luck in the world, that u get more funding.
Im starting 2 worry that my funding will be stopped as well.
I live in bedfordshire.
xx
starsmile Rachael's Diary

FET August 2014 = :BFP: bab10

  • "riddiewoo" started this thread

Posts: 696

Reg: Oct 16th 2010

Location: Crawley

Children: Yes Please !!

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7

Wednesday, March 16th 2011, 12:02pm

Looks like there will be a riot then :thumbsup: We can all chain ourselves to the houses of parliament :thumbsup:


NOV/DEC 2010 1st IVF Poor Response to Stimms Converted to IUI :BFN: :bawl:

March 2011 2nd IVF BFN AF Arrived 8dp3dt ;(

3rd & Final IVF May 2011





MY DIARY

Rachael*

MEMBER

    United Kingdom

Posts: 2,115

Reg: Sep 22nd 2010

Location: Bedfordshire

Children: Two boys & One girl :)

What's Up?
Keep growing little baby :pray:
Mummy & Daddy love you xx

Thanks: 237 / 173

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8

Wednesday, March 16th 2011, 1:02pm

Count me in, really wont be happy if thet stop my funding !!
starsmile Rachael's Diary

FET August 2014 = :BFP: bab10

  • "riddiewoo" started this thread

Posts: 696

Reg: Oct 16th 2010

Location: Crawley

Children: Yes Please !!

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9

Friday, March 18th 2011, 3:52pm

Oh my God the PCT makes me soooo angry !!!!!! I am feeling the need to go and burn their houses down !!!!



As far as I can make out the PCT will honour the next treatment but not further treatments which is a contradiction in itself !!! As our next treatment is our final go they will not fund it ?o( Its all a load of crap !!!!



DH and I have spoken about funding our next cycle ourselves and there is no way we can financially do it. So I dont really know what is going to happen at the moment !!!!! I think we will carry on trying TTC au natural and although it will be like pissing in the wind we might get lucky !!!! I will a clearer idea of where we stand in a couple of weeks and will appeal the PCT decision which is also like pissing in the wind. I think we might be in for an interesting year : D I think all the ladies on this site should go and chain themselves to the houses of parliament it would be great fun : D



I did go riding yesterday for the first time in what seems ages and I think its upset my ovaries as they feel very sore today with nice little shooting pains !!!! Well they need a shake up maybe it will get them working better !!!!


NOV/DEC 2010 1st IVF Poor Response to Stimms Converted to IUI :BFN: :bawl:

March 2011 2nd IVF BFN AF Arrived 8dp3dt ;(

3rd & Final IVF May 2011





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Emma1978

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Posts: 1

Reg: Apr 10th 2011

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10

Sunday, April 10th 2011, 10:16am

NHS/PCT funding West Sussex

Hi Ladies,



I was referred to The bridge in September last year but didn't actually get to start treatment until January 2011.

I was advised I would have 3 IUI and move onto 2 full IVF.

So far my first IUI never started in Jan as I had developed cysts so I was put on the contraceptive pill.

The next IUI in Feb was going well but my ovaries responded too well to the drugs (Gonal-f) so we had to abonden cycle.

Next attempt was Monday 5th April, told to go back on contraceptive pill again due to cysts..........then was told that we would switch from IUI to IVF as we are not getting anywhere. Booked appointment with consultant for Monday 11th April.

Had phonecall at 2.30pm on Friday to be told West Sussex PCT have suspended all funding and I can't have my appointment Monday............. :faint:

I am devastated and think it's utterly disgusting that we can be treated like this.

If you ladies have had any success since your posts in March PLEASE let me know. :thumbsup:

Thanks, Emma x

Maria72

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    Italy

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11

Sunday, April 10th 2011, 9:57pm

As far as I know after the 6th of April 2011 a lot of the funding rules have changed due to the spending cuts. If they have changed their policy there is nothing you can do about it really. Try and contact the PCT and see what they tell you first.
Good luck

  • "riddiewoo" started this thread

Posts: 696

Reg: Oct 16th 2010

Location: Crawley

Children: Yes Please !!

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12

Tuesday, April 12th 2011, 12:13am

Hi Emma



I had my review appointment last week after my unsuccessful IVF funded 1st cycle. I was told at my review that West Sussex PCT has suspended all funding for Fertility Treatment.

I to think it is disgusting that all treatment has been stopped, but like Maria says there is not a great deal we can do about it.

I am going to write a snotty letter to the PCT, my local MP and The UK Health Minister who did express his concerns that PCT's were not Treating Fertility Patients according to NICES Guidelines.

To be honest it probably wont get us our treatment but the more the more people that complain about the more likely something will be done in the future.



I would love to have a baby but as I have Premature Ovarian Failure my drug bill alone would cost over £4000 just to get a few eggies plus the cost of the IVF itself would but one treatment for me at around £8000 which is out of the question for us.



I know its not the answer you want to hear and it all sound very negative but I would urge you to complain you never know your luck. xfingers


NOV/DEC 2010 1st IVF Poor Response to Stimms Converted to IUI :BFN: :bawl:

March 2011 2nd IVF BFN AF Arrived 8dp3dt ;(

3rd & Final IVF May 2011





MY DIARY

Posts: 112

Reg: Oct 27th 2010

Location: Sussex

Children: 1 beautiful daughter

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13

Sunday, May 8th 2011, 9:03am

Well Emma and riddie,

It looks like we're back in business. Both me and dh have made about 100 phones calls since April, and while I'm not sure if it helped, west Sussex are resuming funding of assisted conception!!!!!

Kinda short message as it's tricky on my phone but I wanted to share the good news!!

Apparently we should hear from the bridge shortly.

Have a great day.
Xxx
Nov/Dec LP medicated IUI - BFN
SP ICSI Jan '11-2xday2 embies -BFN
SP ICSI Jan '12 2 x blasts -BFP!!!!
Scan 7wk [zx076]
Scan 12+3 - all good
bab21

    United Kingdom

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Reg: Jul 2nd 2009

Location: Suffolk

Children: Beautiful Jessica Mae x Holly and Elliot!

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14

Sunday, May 8th 2011, 10:42am

:dancing: WELL DONE!!!
3 X ICSI
Jessica Mae Duffety born sleeping on 9 January 2011 (21+2) - TS and HLHS
Holly and Elliot Duffety born on 16 October 2011 (25+6)
Natural Surprise - Matthew Evan Duffety born sleeping on 11 October 2013 (15+5)

Posts: 222

Reg: Apr 11th 2011

Location: Reading

Children: 11 year old daughter (IVF)

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15

Sunday, May 8th 2011, 5:50pm

A few of the london hospitals offer treatment at NHS cost price so although you still have to pay it's about half the price. I have had two cycles this way and received excellent treatment. You can be refered by your current consultant or your GP and dont have to be in any catchment area.
PCOS + poor mobility = ISCI April 11

Age 40 so odds against me! :8o:

xxxxx

:BFP: 24th April!!

Baby Lily arrived 16th Dec 2011





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