# Are you experiencing difficulties in getting your PCT to fund tx?



## Anthony Reid (Jan 1, 2002)

Just came in via email.....



Hello, 

I am working on a documentary which is looking at discrepancies in access to NHS care and treatment across the country. We have been looking closely at the difference in access to IVF treatment and I would very much like to speak to anyone who is experiencing difficulties in getting their PCT to provide IVF.


Many thanks, 

Kate
[email protected]


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## brownowl23 (Jan 3, 2006)

Tony

I wouldnt say discrepancies, but I moved last year and when I went back to Guys I was told I needed IVF ASAP because of my age, but had to go to my new PCT for funding. 
My PCT after a couple of months said they dint fund Guys Hospital so I would have to be rereffered to Kings College.

Dumb doctor wrote to me a month later and asked me to let them know if I wanted the rerefferal. At 39 this year a rerefferal and a wait on a waiting list will put us in a position where we are too old for IVF under our PCT rules.

So basically moving house has cost us our chance of free treatment.

Chris


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## Anthony Reid (Jan 1, 2002)




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## ♥ M J ♥ (Apr 17, 2004)

hi tony i have bumped this over to one of the north east ladies who is hving slight srobs with her pct

x


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## Anthony Reid (Jan 1, 2002)

thanks,


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## Anthony Reid (Jan 1, 2002)




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## Lou W (Nov 1, 2005)

Hi Tony,

Obviously we ended up going not further... but I have always thought it was worth a mention that our PCT informed us they would fund IVF but not ICSI - it's not like we got to choose which one we would need!! They also said they would not pay the IVF amount and allow us to pay the top up to ICSI. 
Makes me very cross - terrible discrimination. 

Lou W xx


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## Anthony Reid (Jan 1, 2002)




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## jess p (Sep 25, 2004)

I have had a terrible time with my PCT!!

Can't go on my nearest hospital list as it's 2 years long & I shall be 40 before I get to the top (their cut off point) so put onto James Paget list in Great Yarmouth - an hour & 20 min drive each way.

Even had to go there for blood tests.

Waited a year for treatment - kept getting told diff dates - first 6 months, then 9 months, eventually a year!

Had drugs this month - I am a poor responder.  Cons scanned me.  Told me only 2 follicles "so no point going on - that's it for you.  Not worth trying again because it won't be any better next time".

Luckily I have been treated at a private clinic previously so I rang them.  Told me to come over the same day - scanned me & there wer 5 follicles!!!!!!!!!!!!!!! 

How can a cons miss that?

I was livid!  Unfortunately they were only able to get 2 out of the 5 as my ovaries were v high up & kept moving (I think the trauma of the previous few days played a big part in this).

Both fertilised & now I'm on my 2ww!  No thanks to the nhs.

I have had to pay for EC & ET myself! Will of course be trying to claim the rest back from the nhs.

The same hospital missed a 4cm cyst when they scanned me the previous summer!  I just wish I'd never gone there.

Jess x


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## thumper3172 (Feb 5, 2004)

can i just say although i am now coming off the nhs waiting list, that the pct for devon and cornwall, have certain criteria we had to fill, 
no children from previous relationship for either partner.
non smokers or given up for 6 months.
under the age of 40
must have been diagnosed already with infertility probs.

but give them credit they were sorting through all paperwork and the older the women the higher up the list they came, now i know for the younger women this does not seem fair (im 33) but, time passes so quickly i think that these women deserve to try now before someone says no you no longer hit the criteria.
good luck all
pet


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## rosielee (Jan 27, 2006)

hi, we have been trying to concieve for over 8 years now  
and still not even tried ivf. we live on the isle of wight and our pct doesnt fund ivf. we have had 2 attempts at iui, get 3 free goes. but our gynae has told us our chances do lay with ivf. 
would love any advice on if you can or cannot appeal or complain to someone to make a difference. feel like our voices need to be heard but all i can do is whisper    we are looking into egg sharing, as this is going to be our only way of attempting ivf. we live on an island where the wages are typically national minimal (sp) wage. we have a mortgage, work hard, try to do things right by ourselves and others, and yet we are not intitled to treatment to help us achieve a family. yet........... someone down the road from me can say she is depressed from having small breasts and get a boob job on the nhs. 
sorry, this is my typical rant actually whenever i talk to people about ivf.  
it makes me that way 
so that is our experience, it makes us sad.......... and mad
rosina xx


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## DizziSquirrel (Feb 15, 2005)




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## Sue MJ (May 4, 2002)

I'm under the same PCT at Lou W here in Bristol.  The only treatment that would be of any use to us is ICSI and they would not fund this on the NHS, although as Lou said, they do fund for upto 3 cycles of IVF (this may have reduced to one cycle now as it's a while since i last had the criteria sent through to me).

My GP tried to appeal to the PCTs for them to at least give partial funding - i.e. either fund just the IVF element and we'd pay the top up for ICSI, or alternatively, fund the drugs and we'd fund the actual cycle - No Can Do!!!  It was just a flat No - it was discussed briefly at one of their meetings, but was decided that they can not allow that for one person and not another etc....

Makes me so angry, but what is making me even more angry right now, is that the local PCT's are now getting together with the Private Clinic we used here in Bristol and giving them contracts to carry out treatment there for those cases that do meet the criteria for other fertility treatments other than ICSI - so there I would be, paying around £5K a cycle, sitting in the waiting room, or lying in a bed before/after EC/ET next to someone that is able to use the same facilities but is having them funded by the NHS!

Sue xxx


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## bagpuss1910 (Nov 8, 2005)

Hi,

We have been refused NHS treatment (Hull) because my partner has a child from a previous marriage. This really annoys me because the problem lies with me, I have severe endo on both ovaries and a lot of my bowel. I think it is really unfair, it's like a lottery. Why should they decide on something like this.
Lorna


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## Bratt (Sep 21, 2005)

PCT Funding is a nightmare, when I had my second Ectopic in Sept 04, we were told we could get 3 goes at IVF on the NHS, only to be told at the follow up appointment in Nov that we weren't eligible as my hubsnad has a daughter from a previous relationship, totally unfair.
Then in April last year they changed the rules on that and we could get 3 IUI and 1 IVF
IUI is useless to me as I have no tubes and unfortunately we got a BFN on the IVF
My argument is that I didn't need any tests to determine why I have problems, I didn't need the 3 IUI's but I am still only entitled to 1  round of IVF
My doctor agrees with me and has tried his best to argue my case, as he puts it if I had high cholesterol from being overweight it would cost a lot more to treat than another round of IVF

Jen
X


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## Tillyp (Apr 26, 2005)

It took me over 2 years and a lot of haggling to finally get one course of IVF egg donation paid for by our local PCT.  Even then I was told that I was very lucky and that they would only pay up to 5k.  I was made to feel guilty that I was daring to ask for money from the PCT and when I chose the clinic to go to I was wrong there as well as there wasnt high enough success rates.

Just a total farce.


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## Bratt (Sep 21, 2005)

I didn't get to choose which clinic   if I had the one I went to wouldn't have been my choice


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## Alli R. (Mar 16, 2005)

Hi

I have been refused NHS treatment (and I work for the NHS (nurse 10 years)- not that that should mean I am treated differently but it really bugs me   ) as my husband has teenage children from his first marriage.

Totally unfair, totally judgemental - I would like 1 free go not even asking for 3. Even if they covered my drugs bill it would be something

Alli R xx


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## Leanne (Jan 24, 2004)

Like Rosina i am on the Isle of Wight where there was no funding whatsoever, not even help towards our drugs. My GP has recently informed me things have changed but we are very far off meeting the criteria. I would have to wait 7 years to be even considered but because our last ivf was successful we no longer qualify. This makes me so mad. We were forced to pay privately for our ivf and travel to London for treatment, not easy when you live on an island and have to pay upto £70 each time you use the car ferry.

But what really makes me mad is the fact that i know of someone who has had 3 abortions in the past 18 months, all paid for by the nhs. It was her choice to risk having unprotected sex, not bother thinking about the morning after pill. Mistakes dont happen three times.She should have been made to pay for her irresponsibility.  And yet i couldn't have prevented my tubes being blocked but have to go private.

It also makes me mad that couples cant be treated on the nhs due to their partner having children from previous relationships. Like Lorna has said, medically it is her who needs the treatment, having a partner who has a child already is not the same as her having a child of her own.

The whole system absolutely sucks and it is about time something was done to make things fair across the country.

Leanne


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## rosielee (Jan 27, 2006)

hi leanne xx
well said hun!!! here. here.
come on tony.......... help us sort this bloody farce out lol
does anyone know if there isANYTHING we can do
im at a point in my life i didnt think i would be again. im absolutely desperate to be a mum again. thought i had my head sorted out, accepted it would take treatment and we would do whatever it takes, but now i feel like ive gone back about 2 years. i dont know why, maybe im having a low week or so, but honestly. to pay my tax and NI and not be able to get the one treatment i so much need. im sorry, but tony blair can stick it up his 
i feel so down, and that im in nowhere land. im not doing anything to help us be parents, apart from letting time pass me by. waiting for a miracle. but miravles only happen when your not expecting them, so im a long way off lol
can you go to local mp? would it make a difference? pah!! 
sorry to rant............... again lol
rosina xx[br]Posted on: 25/06/06, 20:55ooooooooooooops. i just read my post and realised how much of a sad old tart i sound, sorry everyone xx
i am having my period if it explains weird behaviour lol 
rosina xx


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## Marielou (Oct 18, 2003)

I am under Newcastle under Lyme PCT and they do not support funding, not even for drugs    
I fought for years to get at least some funding ~ they woudnt fund even DIUI, and they would fund IVF but not ICSI and not IVF with donor sperm      We eventually decided to go private as we felt we had no other option, which is when we were told they wouldnt fund any drugs ~ not even clomid for IUI's!  The reason I got given was 'If you can afford IVF you can afford the drugs' ~ not even taking into account I was only paying privately for the IVF as they refused to fund it!  

I have heard from my GP that they will now fund 1 cycle of IVF as long as you are 23~35 and been TTC3+ years, but because I had already paid for a private cycle, I was no eligible   plus the waiting list was 5 years.    Now I am very fortunate enough to be pregnant and i know that if I want to try for a sibling, it will again be private. 

There was just no support, and all I got was fobbed off and made to feel like I was wrong for wanting some help.

Marie xx


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## Sarahev (Jun 11, 2004)

Hi,

I am in Bucks and they would not add me to the list til I am 35 ( when the chances go down) but understand treating the older ladies first. my biggest issue is that as i am going to try privately they will NEVER give me a free go....this is ludicrous! If i pay myself and am successful then obviously I will not be eligable as I will have a child.....so this means by paying I have saved the NHS money. I don't see why if I am not successful i should be refused my one entitlement! They should want to encourage ladies to pay while they are younger as this would mean less being childlessby the age of 35 and then being added to the NHS list. It is grossly unfair!

Rant over

Sarah xx


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## KittenPaws (Oct 23, 2007)

I know that this hasn't been posted in for a period of time but i thought id just try. 
Ladies the best thing to do is to email your Director of Commissioning in your borough. Discuss what the regulations are that boroughs are supposed to offer at least one free treatment on the NHS. Also discuss the possibility of out of borough treatment (this is where your borough pays for you to have treatment somewhere else if it isn't available in the area). 
Hope this helps
x


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## Heres Hoping (Nov 5, 2007)

We're in Sussex and have been told we have to pay as husband has a son from previous marriage...grossly unfair, but I've come to terms with it now!

NHS have said I have to go straight to IVF but they will fund investigations. Needed HSG and couldn't get in this month on NHS - I'm not willing to wait and have used private health care insurance which covers investigations and had it done last Friday.

Think from reading this, I may give my doctor a buzz to see what he says about funding / wait lists - the waiting time may influence my decision as to whether I fight or not!


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## Heres Hoping (Nov 5, 2007)

OMG - have just looked at the criteria for East Sussex on the website and it says...

There should be no living children, including adopted children, of either partner by this or any previous relationship.

Crikey, I never thought for one minute if you'd adopted a child you weren't eligible!


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## Brownie x (Aug 9, 2007)

I'm in North Yorkshire.  My PCT aren't funding any fertility treatment, although I am getting investigations done.  As my remaining tube is damaged I have been told my only chance of concieving is with IVF.  We on't have any other children (not that I think that should make the slightest difference anyway).  I am going to ask about help with paying for the drugs, but I don't hold out much hope.

It's amazing how different the situation is across the country


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## helz22 (Oct 4, 2007)

We have had difficulties with funding/contacting the PCT as myself and my husband live in Gloucestershire and didn't meet all the criteria (3 years of trying).  My husband is registered with a doctor through work in Oxfordshire and I'm register with GP in Glos.  We meet all the criteria in Oxford but funding has to be where the woman is registered, so for us Gloucestershire.  By the time we meet the criteria for 3 year trying, I'll be 39 and if there is a long waiting list we might miss being funded as another criteria is you have to be 39 or below.  We have approached the PCT about this issue but didn't receive any communications back from them.  Very frustrating to find PCT have selected different criteria from the NICE suggested criteria.


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