You are not logged in.


Unread posts
  • "hedgehog09" started this thread

Posts: 2

Reg: Oct 30th 2008

Location: Greater Manchester

  • Send private message

1

Wednesday, November 5th 2008, 1:31pm

Newbie seeks IVF Postcode Lottery & Private Treatment Advice

Hello Everyone

This is my first time here. I am 36 and my husband is 35. We have been trying to conceive for the last 2 years and finally visited our GP after 12 months and we were referred to a consultant. It was found that my husband had a low sperm mobility and high abnormal sperm forms. My hormone levels were fine although they discovered I did not ovulate every month ( my periods were every 28-35 days). I underwent a hysterosalpingogram and they suspected a minor blockage on my left fallopian tube which cleared during the procedure.

We are now on the waiting list for IVF treatment through the NHS and we have been told we have a two year wait in front of us because of the area we live in. I know that other areas have less than a year waiting list! I can’t believe such a postcode lottery exists!

My questions, if anyone can answer, them are:

1) Has anyone else had experience of this post code lottery?
2) Is there a work around? – i.e. can I obtain a temporary address in shortlist area?
3) Because of our ages I am very saddened by this news and will have to also look into options of going private or abroad. I have no idea of the costs or practices etc or how they differ. Has anyone had any experiences they can tell me or any recommendations?

Sorry for all the questions! I have been getting into a right tiz about all of this and the consultant appointments on the NHS are so spread apart and I wont be able to ask any questions about procedures till my next scheduled appointment in Feb …the clock is ticking! ;o(

I look forward to any replies and advice you can all offer…thank you so much

xx

Posts: 1,475

Reg: Jul 27th 2008

Location: Highlands aka middle of nowhere

Children: IVF/ICSI miracle born 06 Jan 2010

  • Send private message

2

Wednesday, November 5th 2008, 1:42pm

Hi there,

Im sorry to hear of your problems with the NHS waiting list - it is so so unfair how we all have to wait different times (especially when age is not on your side), your still young but i understand you feel that 2 years on the list is long time and could push you off the NHS tx criteria (same thing happened to my cousin).

I dont know how to find out what waiting lists are like in different areas of the country - im from the highlands and been on the list since march 08 but expect to have my first con app Feb / mar 09, so i guess i have a releatively short wait compared to you.

I dont know if a temp address would work - When i lived in Edinburgh i had to get a lot of tests done and was told i needed referred for tx, but when i said i was moving and could i be referred to a clinic up norht i was told no they could only refer me within my area - so i had to wait til i moved, then reg with a GP, get gp blood tests, wait on con app, go through more tests before being referred for IVF (again).

it is extremely disappointing - hopefully someone will be along soon who has some more info though but really just wanted to say good luck



TTC 4 yrs
Me - 32 yrs, DH - 32 yrs
clomid then IVF


1st IVF Apr 09 :BFP: bab21






Posts: 2,734

Reg: Nov 22nd 2007

Location: Staffordshire

Children: William and Charlotte

Thanks: 1 / 0

  • Send private message

3

Wednesday, November 5th 2008, 2:46pm

Hey sweetie, I am really sorry that you are having a rough time TTC and understand your frustration with the NHS and their 'postcode lottery'.

We were in a similare situation to yourselves except that our PCT offered zero funding so we had no choice but to pay to go private. We considered all sorts of options, from using a friends address (not possible) to buying and renting out a property a couple of milea away in Cheshire as they offer funding. But in the end, we decided the costs would be more to do that than to pay for IVF and with the added stress, would not help us. In the end we borrowed the money and travelled to Nottingham for the tx which, as you can see, was succesfull.

It is a difficult situation to be in but I am sure you will do whatever is best for you both and would like to wish you all the luck in the world.

Please don't give up, dreams DO come true.

xxx


IVF #1 2008 :BFP: William born 15/2/09
Our 6 yr TTC journey WAS over
Shocking natural :BFP: Charlotte born 10/9/11
:happy: Our family is now complete :happy:






bubble

Megastar

    United Kingdom

Posts: 12,910

  • Send private message

4

Wednesday, November 5th 2008, 2:49pm

Welcome to :FZ: hedgehog

I hope you like it on here, we have very friendly and supportive members that are sure to make your TTC journey that little bit easier, I hope you feel right at home with us all soon.

I'm sure our members who have experience of IVF will try and answer your questions.

Here are some links that you may find useful.

There is an abbreviations section HERE so you know what we're all going on about.

There is a getting started on fertilityzone thread HERE this contains everything you need to know about getting started on FZ and a few guidelines too.

There is a how to search section HERE so you can get the maximum benefit from the forum.

If you have any questions about anything, just ask. :smile:

Wishing you all the luck in the world with your TTC journey, I hope you get your BFP soon!!

blowkiss

ttc since July 06. 8 cycles of clomid. BFP on cycle 5 (Dec 07) ended in m/c at 9.5 weeks. Second BFP on cycle 8 (May 08)




Blue

MEMBER

    United Kingdom

Posts: 8,115

Reg: Sep 15th 2008

Location: With the fairies

What's Up?
I need sleep!

  • Send private message

5

Wednesday, November 5th 2008, 2:54pm

Hi Hedgehog,
I am so sorry you are in this position.
Personally, i think if there is any way you can find the money, you should go private and get one treatment cycle in as soon as possible. If you have one treatment and it fails (i hope very much it doesn't), it is likely that you would still be on the NHS waiting list and you could get your second attempt "for free".
It's expensive, and it totally sucks...
Just my $0.02
Wishing you the very best of luck,
WTW
xxx

My Diary
10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:

This post has been edited 1 times, last edit by "Blue" (Nov 5th 2008, 2:54pm)


JENSQUI

Megastar

Posts: 7,427

Reg: Feb 26th 2007

Location: Edinburgh

Children: one very special daughter

  • Send private message

6

Wednesday, November 5th 2008, 3:06pm

you might want to check out your PCT rules as well. In my area we get 3 goes at IVF on the NHS. Because there is a 3-year waiting list we hAve decided to go private as I can't wait that long. However, the catch is that for every go we pay for privately a 'free' go is knocked off. So, unless we get lucky we'll have paid for 3 treatments byt the time we hit the top of the waiting list and so would get nothing on the NHS.

good luck xxx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

Peppa

MEMBER

Posts: 10,434

Thanks: 1 / 0

  • Send private message

7

Wednesday, November 5th 2008, 3:34pm

Hi Hedgehog and welcome to FZ

I'd echo what Jensqui says - definitely check out exactly what you are entitled to and what the rules are for going private whilst on the NHS list.

We were on a two and a half year waiting list and would only have got one free cycle so we decided to pay for private treatment and were very lucky that it worked. However because of the PCT rules in our area we were able to get funding for the drugs on our private cycle which saved us quite a few hundred pounds. If i had not looked into this and asked my gp we would never have known so it is always worth asking!

As for a temporary address in order to get treatment sooner - i have to say that i dont think this would work. For a start you would have to go through the referral process all over again and this would eat into the time that you will already have been waiting.

The waiting times are so frustrating, i know exactly how you feel but apart from going private there really doesn't seem to be a way around it.




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
Baby boy born Jan 2012




Posts: 156

Reg: Oct 20th 2008

Location: St Helens, Merseyside

  • Send private message

8

Wednesday, November 5th 2008, 4:03pm

I can't believe how different areas are treated so differently! I'm in St Helens, Merseyside and when prescribed Clomid last November was told there was a 2 yr wait for IVF so they would put me on it sooner rather than later. I then got a letter in Feb this year to say the waiting list had gone down to 6 months, with then starting my initial consultations just 3 months after that letter! I'm now into my 1st IVF cycle and can't believe how quick it's gone.

I feel so bad for all you out there who have years to wait and it makes me wonder why we can't all get treated the same.

Good luck to you all.
xx LEAH xx

  • "I'm hopeful" is no longer a member of FZ

Posts: 1,801

Reg: Jul 13th 2008

Location: Hampshire

  • Send private message

9

Wednesday, November 5th 2008, 7:05pm

Hi, just wanted to say sorry about the trouble you are having. I suggest at least go private for one treatment if you can afford it! However, I have a ten year wait in my postcode because I am too young!! We've been hoping for a bfp since July 06, so we have paid for one treatment and considering to pay again as we also have time against us as my DH sperm is 'running out' and really wont have a chance in 10 years!! Sorry not very positive but you need people to be truthful and not give you any false hope (like my consultant!) With regards to cost we spent £5500 on the first one in Woking. In Southampton it will cost us about £4500. Hope this helps.

It's Twins!!




  • "hedgehog09" started this thread

Posts: 2

Reg: Oct 30th 2008

Location: Greater Manchester

  • Send private message

10

Wednesday, November 12th 2008, 4:52pm

Hi there,

Thanks for all your comments and advice...its good to get info from other peoples experiences too..

burnzyuk - Yes you are right - I am very worried about being pushed off the waiting list, and also because your fertility nose dives at 35 I am worried that I may be less successful 2 years down the line :bawl:

It seems a bit backwards that you would have to be referred again should you move and go through all the tests yet again - is there not enough of a burden on the NHS without duplicating work? It really sounds backwards and no wonder we are in such a pickle if such bureaucracy exists.

I hope you do well in feb/march..a year is still a long time to wait for something, but I’m sure it will all be worth it :happy:

AliBird – Zero funding! That’s really bad news :sadface: What stops you using a friends address? Surely you could rent a room anywhere and register with a local GP…what to stop you staying with a friend until this is over? Am I being Naïve here? It sounds like yo have been through some of the thought patterns that I ham going through now… its driving me to distraction! I can see that you have a little one on the way though – I’m very pleased for you..congratulations :happy:

JENSQUI & Michelle - How do I check out the PCT rules? Do they cover fully what I am entitled to and what the rules are for going private whilst on the NHS list or do I need to look elsewhere too? I never realized there were catches like that! It seems awfully unfair. I looked into egg donation as the IVF then is very cheap – but unfortunately I’m too old! You have to be under 36.

leahjayne – you really were lucky! You obviously live in a good area! My mother in law lives in St Helens and it would be so much better if I could live with her while I am waiting if it would reduce my waiting time ?(

Lisa – I’m sorry to hear about your negative experience too – I hope you have success soon.


Thanks again for all your advice!

Hedgehog

Sun Flower

Superstar

Posts: 3,876

  • Send private message

11

Thursday, November 13th 2008, 10:15am

Hi Hedgehig
reading all of the posts above seems like you have been given some really good advice. I am in the same post code `zero funding` area as Ali Bird therefore we have paid to go privately, not an easy decision as we didn't have money readily available for treatment but we wanted to get going asap so we had no choice really.

We have both had tests done at the private clinic and we are now having IVF, the cost including my Dh SSR procuedure, blood tests etc.. and the total for IVF has cost us approx. £7,000 so far....

I dont have any info on the `using addresses in another area` as it is not something which we thought about ?( however, looking at our bank balance now - maybe we should have thought about it!!! ?(

whatever you decide, I wish you all the luck in the world xxx

Posts: 248

Reg: Jul 23rd 2008

Location: UK

Children: Fingers crossed

  • Send private message

12

Thursday, November 13th 2008, 10:25am

your pct's guidelines should be publically available - usually on their website.

which pct you come under depends on which GP you are registered with, which depends on your address.

if you wanted to change postcodes, you would have to convince a GP in the new area that you genuinely live there, register with them and be referred by them to the fertility services in the new area.

it would then be up them which of the tests they want you to repeat and where they put you in their waiting list.

if you were thinking of moving anyway, maybe the postcode lottery is something you could take into account , but moving house is a lot of upheaval and expense to go through in the hopes of beating the postcode lottery, especially since pcts are continually revising their policies and moving the goalposts.

when we were thinking about moving, the fact that the policy was more generous was a factor for me, but by the time we actually moved, they'd reduced it to 1 cycle instead of 3.

good luck

sadie

Star

Posts: 1,823

Reg: Feb 10th 2009

Location: Gloucestershire

Children: One on the way!!

  • Send private message

13

Friday, February 13th 2009, 7:14pm

Hi
We have been trying for a baby for over 18 months now, and as I am now approaching my 34th birthday in June you would think they would have carried out a lot of tests and got a move on! I have had 5 cycles of clomoid, but unfortunately it has failed! :bawl: They have so far; only tested my blood on 21st day and ftested or rubella and thyroid trouble. I have had no ultra scan! They haven't even analysed my husband's sperm yet! Anyway you are probably wondering what this has to do with I.V.F. Well as the doctor has informed me that this could be the next step after investigations, I did some research. I am not entitled to any NHS treatment as I don't fulfil the criteria, due to my husband having a child a long time a go with his ex partner!

We have been quoted about £4,000 which means we won't be able to move from our house for a very long time. Luckily we have some savings, mainly due to my husband working very long hours, however we were hoping to move out of our 2 bedroom house. I just keep hoping that I will conceive in the next few months, but as the time goes by it looks less and less likely! :bawl:





Clomid - 6 months - all BFN , one blocked tube and hormonal problems

IVF- Feb 2010 - :BFP: bab21

sadie

Star

Posts: 1,823

Reg: Feb 10th 2009

Location: Gloucestershire

Children: One on the way!!

  • Send private message

14

Friday, February 13th 2009, 7:18pm

By the way I meant to say good luck and I will be thinking about you. But yes it does suck when you know you have got no options and all they seem to do is delay the process even more.

Thinking of you!
:smile:





Clomid - 6 months - all BFN , one blocked tube and hormonal problems

IVF- Feb 2010 - :BFP: bab21

Posts: 303

Reg: Dec 21st 2008

Location: Manchester

  • Send private message

15

Friday, February 13th 2009, 8:46pm

Hi there,

Which hospital are you being referred to? We have been referred to St.Mary's in Manchester, are you going there? We went on the waiting list back in July/August last year and were told that there was also about a 2 year waiting list which was devestating. To our complete surprise we were given our first appointment in January this year and are hopefully going to start treatment within the next couple of weeks. We were extremely shocked that we were seen so soon but apparently people are being pushed through more quickly to cut the list lengths - I think they are now saying that they try to see you within 16 weeks?
Anyway, best of luck and hope that the wait is not too long. x

Posts: 701

Reg: Dec 22nd 2008

Location: Derbyshire

Children: St Mary's

  • Send private message

16

Saturday, February 14th 2009, 11:07am

Hi ya,

I was also referred to St Marys in Manchester. I was told that the waiting list was about 2 years. There was a bit of a mix up with when our consultant referred us. Think it was April 08 and I started my DR injections last Monday.

Hope its the same for you!

Kelly x

Feb/March 2009 1st IVF BFP blighted ovum diagnosed @ 8 week scan
babydust
2nd IVF April :BFP: Two baby8 bab10 due 22nd December 2010
Fingers Crossed this time will result in our much wanted Baby X


Posts: 106

Reg: Apr 20th 2008

Location: Bolton

Children: None yet

  • Send private message

17

Saturday, February 14th 2009, 6:09pm

Hi Hedgehog

I live in Bolton and we were told that there would be a two year waiting list when we first got referred on the NHS. In the end it was only 8 months. I know they are working really hard to get that down to an even shorter time, so it could even be 6 months!

Our PCT only allow you to have one attempt, but if you live in Chorley, which is less than 8 miles away, you get 3 attempts! It is just not fair!

Good luck.......

Kel X
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:




FERTILITYZONE



MEDHURST – PROUD HOSTS OF FERTILITYZONE