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Rationing babies: IVF is still a postcode lottery

Childless couples suffer in UK's 'unfair and unjust' system

By Jonathan Owen

The Powrie family from Gloucester were able to get IVF treatment funded by the NHS

The Powrie family from Gloucester were able to get IVF treatment funded by the NHS

The true extent of the postcode lottery that blights the chances of IVF treatment for thousands of couples in Britain is revealed here for the first time. New data gathered from primary care trusts (PCTs) throughout the UK shows starkly that where you live determines your chance of getting infertility treatment on the NHS.

Childless couples in Scotland, where almost all PCTs routinely offer three cycles of IVF treatment – the nationally recommended level of treatment likely to result in successful conception – stand the best chances of pregnancy. Elsewhere in the UK, however, the picture for would-be parents is bleak, according to research by the charity Infertility Network UK.

PCTs in Wales, Northern Ireland and most of England offer just one cycle of IVF – far short of the three recommended by the National Institute for Clinical Excellence (Nice) five years ago – the charity says. It warns that many trusts frequently have strings attached to IVF that bar people unless they fit into narrow restrictions, such as age limits, weight, and bans on couples who smoke or who are not in a stable relationship.

The failure of most PCTs to provide adequate treatment for thousands of childless couples came under fire last night in a scathing attack by medical experts and politicians on the Government's failure to honour its pledge, made in 2004, that couples would be given three cycles of IVF treatment.

Norman Lamb, the Liberal Democrat health spokesman, said: "The postcode lottery is alive and kicking and is impossible to justify given the absolute clarity of guidelines on IVF. It is scandalous that so many PCTs are flouting the guidelines and... making a mockery of them in the process." He added that health trusts needed to be held to account and "exposed for their failure".

The current situation is unacceptable, according to Dr Allan Pacey, secretary of the British Fertility Society: "Five years is long enough for people to wait for the Nice guidelines to be implemented, and it's a disgrace that they still haven't been. If this had happened with other aspects of healthcare... there'd have been a major scandal."

The "unfair and unjust" system of treatment is resulting in thousands of couples being denied treatment that could help them have children, said Clare Lewis-Jones, head of Infertility Network UK, which has launched the www.fundingforfertility.com website to help people know what their situation is. "Sadly, access to NHS funding for fertility treatment is still a postcode lottery – right across the UK," she said. "This is affecting the lives of thousands of people – one in six couples seek treatment."

Health bosses are coming under increasing pressure to offer greater IVF treatment on the NHS, and there are signs of improvement in some areas, notably eastern England, which last week announced that from this month patients will be able to get up to three cycles.

Campaigners claim the criteria used to decide who qualifies for help need to be standardised. "It is the criteria to access treatment that varies enormously. It... leads to huge confusion and is basically unfair," said Ms Lewis-Jones.

Last year the Expert Group on Commissioning NHS Infertility Provision called on PCTs to make IVF treatment a higher priority. Next month, the health minister Dawn Primarolo is expected to launch a new guide to best practice, to encourage NHS commissioners to fully implement the Nice guidelines.

Almost 45,000 cycles of IVF are performed in Britain each year, but the shortage of NHS treatment means that around three-quarters have to resort to expensive private treatment.

A Department of Health spokesperson said last night: "Local variations in the provision of IVF cause distress to many childless couples," but insisted that there had been "significant improvements".

The lucky few: two families and their fight for treatment

The Powrie family, Gloucester

Lucy Powrie was able to get her IVF treatment funded by the NHS. "We weren't quite sure if we were going to get funding; we moved down from Scotland in July 2006 and we would have got three funded cycles up there. I was expecting a fight, but we were relieved when we were told we'd have one funded cycle."

Mrs Powrie was lucky. The 33-year-old fell pregnant after one IVF cycle in 2007. "People need to understand the pain that infertility brings with it, it's a huge loss, almost like bereavement, and to have got the funding and to have got Isaac was so wonderful," she said.

"I do feel very lucky, but it's not fair that some people have access to funded treatment... It does come down to desperation for some people who will even consider moving home to an area where there is NHS-funded treatment."

The Dawson family, Bracknell

Nicola Dawson, 35, was told she did not qualify for treatment because she was too young and had already had private treatment. "We found out that our primary care trust had added extra criteria on top of the Nice guidelines, which rendered us ineligible for treatment. We were lucky that we were able to borrow money to pay for private treatment, but it must be heartbreaking for people who are not able to have a child because they cannot afford to have treatment that they should be getting on the NHS in the first place," she said.

"Infertility is absolutely devastating. It really kicks you when you are down at your lowest ebb to then have somebody turn round and tell you that because you happen to live in a certain area, you can't have the treatment... I was very upset and angry about it all."

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Comments

Luxury Treatment
[info]fourpie wrote:
Sunday, 10 May 2009 at 04:39 am (UTC)
Unfortunately for some and unpaletable as it is, IVF is a luxury treatment. Being unable to have a baby is not a life threatening or dibiltating condition that prevents you working. The planet has plenty of people already. If the NHS is looking to reduce costs (and it always is), IVF should be top of the list for removal as a free treatment, no matter how many high profile, celebrity consultants like Dr. Winston support it. Adoption should be the recourse for infertility, not IVF.
World population problem
[info]berserkerboy wrote:
Sunday, 10 May 2009 at 07:07 am (UTC)
Sorry, but there are too many people in this world. A bad harvest for a couple of years running will lead to millions, perhaps billions dying from starvation. We should be looking to cut our population rather than incentivise its growth.
infertility is devastating
[info]jaffgyp wrote:
Sunday, 10 May 2009 at 07:37 am (UTC)
'infertitlity is really devastating' - well, if not getting what you want (as opposed to what you need) is all anyone has to be devastated about, i see no reason to give IVF treatment to anyone, regardless of postcode; we seem to be stuck with a whole generation of supposed adults who have tantrums at the drop of a hat because they cannot have babies, jobs, holidays, cars, houses, good looks , fit bodies and god knows what else FREE and at a drop of a hat;
i'm devastated to read all this stuff- if they really value children for their own sakes rather than just as genetic playthings and/or social trophies there are umpteen other ways for them to really do some good for society as a whole instead of expecting society to play father xmas for them ( sorry re all those hurt feelings out there but you may not have noticed that the UK lifelong free party with unlimited goodybags of choice at the door, courtesy of taxpayers mlked dry is OVER! )
Missing the point
[info]tricia69 wrote:
Sunday, 10 May 2009 at 07:53 am (UTC)
The World Health Authority (unlike some thoughtless individuals here!) recognise infertility as an illness. Speaking as an adoptive mother adoption is not an easy or always successful option as you seem to suggest. I assume those who've responded either chose not to have children (thank goodness as your selfishness and ignorant/arrogant attitudes may have impacted on them far more than your comments here.) or have children and are completely oblivious to the emotional suffering of people who can not have children - I'm assuming you don't know of many as those who you do know may have already chosen not to share any of their anguish with you for fear of your sharp tongue.

The article mentions infertility network uk, they have a forum to share unhelpful comments from well meaning people, maybe what we do neeed is just more awareness and educating people who don't experience infertility so they can at least empathise and begin to understand to be able to lose some of the judgmental and arrogant assumptions you suggest

Tricia
Re: Missing the point
[info]jaffgyp wrote:
Sunday, 10 May 2009 at 08:37 am (UTC)
'selfishness and ignorant/arrogant attitudes' - yes that seems to sum up the free IVF demanders quite well;
almost anything can be classed as an illness (remember, actually having children, albeit illegitimate ones, was once enough to land a woman in a mental hospital for life) and if childlessness is an illness ( poor eggs, blocked tubes, inadequate womb, dud sperm, mental stress, etc, as well as just plain bad luck )then it seems all the more odd to create children simply as a cure for ill adults, children who might even inherit some of those problems themselves?;

civilisation is supposed to raise us up above basic,inevitably selfish, survival instincts- we are supposed to learn to value the common good, as many lesser species do when they pool childrearing in harsh environments- and ours is going to get very harsh indeed, quite soon
Re: Missing the point
[info]jaffgyp wrote:
Sunday, 10 May 2009 at 09:03 am (UTC)
PS - a CV for the record: i was one of 5 well loved children; for financial and social reasons i have just one child - a daughter who cannot have children: nevertheless she leads a full and rewarding and happy and socially responsible life, is a model godmother to 3 of her friends' children and devotes more than half her annual holidays to voluntary demanding work with other people's children ; i have worked directly with other people's children nearly all my adult life, from primary right up to higher education age groups; sadly i am more than well acquainted with the difficulties of raising them - natural, fostered, adopted and test-tubed - and sadly too often aware of too many parents' self-serving motives in having and rearing them...
Re: Missing the point
[info]aniandan wrote:
Sunday, 10 May 2009 at 12:29 pm (UTC)
You are very lucky to have 4 brothers or sisters which is many Aunts & Uncles for your only daughter with no doubt many cousins. Imagine how you would feel without any siblings, nieces, nephews and of course Aunts/Uncles & cousins for your daughter. How could you even compare the maternal need of becoming Parents to much needed and would be much loved and cared for child/children to wanting jobs, holidays, cars, houses, good looks, fit bodies!!! These comments are unforgivable. Its not a matter of wanting something for free at all. How could you possibly compare couples who would do and go through the most challenging journey to bring a child into the their family to the families you have worked with. We all pay tax/national insurance. Its a differnet story when its ourselves that need the help. Why is it only Scotland's curently sticking to the guidelines of NICE even if you do fall within the narrow restrictions of the PCT's.
IVF.
[info]goosegreece wrote:
Sunday, 10 May 2009 at 10:15 am (UTC)
I would have thought that infertility was natures way of telling you that you are unsuitable for reproduction. I think its sometimes called evolution. There are a great many children in this world without parents....so what is wrong with adoption as a primary course of action?
The suspicion must exist that with IVF that you are passing the same problem on to future generations.
No money for HIV, RSPCA, and now this
[info]famulla wrote:
Sunday, 10 May 2009 at 10:39 am (UTC)
No money for HIV, RSPCA, and now this.
I thank you
Firozali A.Mulla.
Empathy
[info]sadie24 wrote:
Sunday, 10 May 2009 at 01:24 pm (UTC)
I am very angry and upset by many of these comments. I don't think people realise how infertility can consume your whole life - it affects relationships, your family, your health, finances and day to day living. How can people be so unkind when they have never had to go through endless tests and operations just to have a baby. I would suggest not to bother making a comment unless it is constructive and you really do know something about infertility.
Re: Empathy
[info]sceptic101 wrote:
Sunday, 10 May 2009 at 05:07 pm (UTC)
"How can people be so unkind"? It's called being realistic. No-one has a need or a right to reproduce. The selfish demand for a child/children 'of their own' (exemplified in your words 'just to have a baby') results in personal unhappiness and emotive demands for public funding. Hands off my taxes lady. If you like kids so much then foster some. Of course if you're unsuitable to foster why would you be a good mother worth funding from the public purse?
Re: Empathy
[info]beanserra wrote:
Monday, 11 May 2009 at 06:07 pm (UTC)
I'm not sure how you can draw the conclusion that because Sadie24 can't have children, she would be a bad mother. How do you know she hasn't fostered? If she hasn't, I maintain that you do not know the reasons why (and it might not be because she is 'unsuitable' to use your words). A wise person once told me "there is no heirarchy in grief". Perhaps you should not judge until you have walked in someone else's shoes.

I would also maintain that knee replacements, hip replacements and even bone-setting after a fracture aren't 'life threatening', but we wouldn't hesitate to say that someone who needed such treatments should get them on the NHS.

I agree with Sadie24 - if you have nothing constructive to contribute to this debate, then you should maintain your silence. Couples who go through the pain of not having children have quite enough to bear.
infertility is an illness
[info]kara76 wrote:
Tuesday, 12 May 2009 at 08:00 pm (UTC)
i have read these comment and i really can't understand some of your comments and this just shows your lack of understand of infertility. IVF is used to treat infertility, many infertile couples are infertile due to medical reasons, PCOS, endometrisis, tubal removal (myself) due to infection, cancer i can of course go on and on.,
Having a child is a basic yearning of most men and women as for calling it a luxury treatment i can assure you 6 weeks or more of injecting yourself is not a pleasure. IVF is emotionally draining and no one does it out of choice.
I hope that no one is your family ever experiences infertility as i certainly wouldn't want a mum, dad, aunt or uncles with such views as the support would not be available.
i have experience infertility for almost 12 years and i wish people who don't understand the full impact of infertility would not comment of something they have no understand of.


Re: infertility is an illness
[info]dusty2009 wrote:
Friday, 24 July 2009 at 07:45 am (UTC)
I just hope that all of you heartless people out there never have to face the reality of being told that you may not ever have children naturally. I also hope that your children never have to face this as I'm guessing you will not provide any support for them whatsoever............you cannot seriously tell me that if your daughter or son came to you and told you that devestating news that you would be awful enough to say that they are obviously not deserving enough to become parents. HOW APPALLING. Why should people have support from the nhs to give up smoking, have gastric bands fitted, come of drugs or alcohol? People like you and your comments disgust me........lets hope that one day you have to face someone you love with this issue and be as heartless as you have on here. Methinks your opinion might just change when it becomes real for you.
Next Time Round I'll Put Me First?
[info]infertile72 wrote:
Monday, 31 August 2009 at 11:16 pm (UTC)
I am a fertility patient who pays her own way, aswell as working hard and contributing £30K of tax per year plus pays for all her treatment privately/has to do it during annual leave and thus is collecting debt despite my taxes being used to subsidise the lazy masses out there who enjoy annual leave 24/7 all year round. I reckon if I had perhaps not bothered waitressing my way through university, working & studying 18 hour days for years, or contributing to society doing scientific reserach and developing the medicines that save the rest of the public's lives and simply left school at 16 and went on the dole and got pregnant with the first bloke that came along, I'd probably now have the children I long for and having my housing benefit paid by idiots like me who were brought up with this foolosh 'work ethic'. With this approach I'd have cost society alot more and not gone through the pain of 4 miscarriages but there you go, retrospective wisdom is a great thing. Finally, may I remind you heart attacks are caused by lifestyle issues and even cancer has been linked to diet so should we stop funding those treatments too?


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