# Todays Radio 4 Womans Hour discussion on HFEA Chair



## Anthony Reid (Jan 1, 2002)

This thread is a place holder for discussion of the radio 4 show that airs today between 10am and 11am.

Additional information:
http://www.fertilityfriends.co.uk/forum/index.php?topic=136670.0

Please feel free to leave your comments here..

Regards,
Tony

/links


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## siheilwli (Jan 18, 2006)

I've already emailed my questions... I suspect I should have made it shorter... 

_
Don't you think it's unfair that you compared IVF treatments to cancer treatment in your Times interview? Why, when discussing IVF, do people engage in a "competition of diseases"? Stating that "infertility is not for most people life-threatening" does in no way address the issues involved. Setting bones often isn't dealing with the life threatening, performing unlimited abortions don't answer a life threatening need, even restoring sight isn't a life-saving treatment...yet I would never DREAM of denying people these kinds of treatments. I understand that you have faced cancer personally, but surely this shouldn't colour your view on IVF matters. You are right, "infertility isn't life threatening," but we are suffering nevertheless.

The cost of IVF is nothing compared to the contributions children conceived through fertility treatment will make to society in a few years - financially as well as culturally. In most cases infertile women are at the peak of health, and are no drain to the NHS in any other way - we don't smoke, we've given up coffee, and we're eating healthily - we take responsibility for our health. Wouldn't it be wonderful if the Government and the HFEA did take the long view rather than think of the short term? NICE guidelines have shown that funding 3 IVF cycles can be beneficial, with doctors and scientists learning a bit more each time. Instead, it seems, we are faced with obstacles all the way. I was shocked that the new CHAIR of HFEA was saying she wasn't "sure what to do with infertility" in terms of extending the NHS provisions. How do you expect to form your views... shouldn't the CHAIR know and have a view on this BEFORE being appointed? Can you clarify your views on extending NHS IVF. _


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## Anthony Reid (Jan 1, 2002)

I suspect the issue of funding will be sidestepped - due to it being out of her jurisdiction, however it would be nice to know what her views are.

Siheilwli, your point about infertility always being pitted against cancer is an interesting one.

In my view - due to funding, cancer sufferers have hope. Without funding - hope is often taken away from infertility patients and they are forced to go through the mental trauma that we all know.


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## siheilwli (Jan 18, 2006)

It doesn't sound like they'll be putting questions to her. 

I would have liked to ask too if they will be any distinction in the singleton argument between 2/3 day embryos and blastocysts.


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## Anthony Reid (Jan 1, 2002)

I'm at work so cant hear it until I get home tonight.

But feel free to keep questions coming on this thread!

Tony


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## KittenPaws (Oct 23, 2007)

Is that all? Is the interview over?


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## siheilwli (Jan 18, 2006)

Shallow interview... not very challenging at all.. 

She said that "Having to learn an entirely new field..... is every academic’s dream...."   But to be honest I can only see it a every IVF patient’s nightmare!!!  I think the role, although being a lay role, should neccessitate some kind of prior understanding of the field. I don't think that makes a difference to your ethical views.  To appoint someone that needs to be educated in a completely new field is a bizarre way to go about it surely.


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## lily67 (Jun 14, 2006)

Hmm, it wasn't really that much of an interview was it?  They could have made so much more of this and had a sensible discussion about it, but it was all over in about 17 minutes.


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## holly01 (Feb 10, 2007)

i agree that it is unfair of this lady to compare ivf or infertility to cancer issues and how dare she say (as a mother of 3!!)that it is not life threating i am sure there is many a day us ladies suffering IF have felt so low and depressed and thought there was no light at the end of the tunnel.....
and why does she keep refering to wiring a plugi personally cant wire a plug but i have learnt over the 5 yrs of the infertility rollercoaster to deal with the heartache etc which we have been dealt,i am sorry for the rant but i dont feel this woman knows enough regarding infertility to be a spokesperson for it,i am sorry she suffered through cancer but maybe she would be better suited being a spokesperon for cancer patients(and dont think i am being disrespectful to cancer patients as i have lost my father to it so i do have a personal experience)


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## poopy (Oct 11, 2005)

I don't ever think we will get the help we need?
she sounds symathetic but will she actually do anything about it,as for funding   thats all i can say we have now spent £26000 on fertility treatment and had never had a cycle paid for don't get me wrong my consultant has given me the odd blood test and scan with no charge but its just not good enough.
my gp and consultant want us to go on a uk list for donor eggs as we are going abroard for treatment at the moment BUT how on earth can i sit for 2 years waiting for a donor?and if we do go on a list will it be NHSfunded i don't think so.
i to texted my questions in but like you siheilwhi they where not addressed.
poopy.


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## Bekie (Aug 23, 2004)

I listened in but to be honest it was rubbish... it was quick and none of the issues had time to be discussed in any length at all   No questions were put to her from the public and well it wasn't really worth the listen to be fair


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## Lou F ❁ (Feb 28, 2003)

i missed it n got confused when they were talking about something else !!!


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## Chocolate Button (Jan 1, 2008)

Women with infertility was mentioned several times throughout this interview. What about men with infertility. I really is a one sided condition. Never once did she say couples with infertility issues or male factors contributing to infertility.

I also hope her sister was happy for her to mention her chlamydia on radio and that they had fertility treatment.

Anyone who missed is can here it again. Just click on link option to listen to past shows are available.


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## siheilwli (Jan 18, 2006)

Chocolate Button - your reference to her sister had me in fits of laughter! I know I shouldn't!


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## siheilwli (Jan 18, 2006)

I think it's important to take an interest in the HFEA, especially when there's a new chair, and it's equally important for us patients to be able to put our points of views accross. We can't really do this unless we actually take time to read the articles or listen to interviews done by them. I don't think all of us going abroad is the answer Newdays!   Although I appreciate that many on FF have found their dreams come true in clinics accross the world.  Surely in an ideal world we should fight to change things here, so that we get a better service in the UK, not having to rely on being away from home for Tx.  

I don't agree with all the HFEA policies or decisions, but think it's important that the fertility "market" is regulated. There are clear ethical issues to be decided upon, and they are also there to protect us as patients to a certain extent.


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## Clareybob (Mar 4, 2007)

My main comment has to be - how does a professor of Renaissance studies get to be head of the HFEA?!


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## Hun (Jul 14, 2003)

I agree wholeheartedly Lukey.

What frustrates me so is that the over the last 5 years of my life the HFEA have had their 'cut' of very cycle of IVF I've had....and i really can't see what 'benefit' their presence has provided me....

What frustrates me most, is for the future of IVF and infertile couples in this country I want to keep listening, I want to be engaged. And I just feel that the patients voice is lost in all of this.....todays interview was case in point.....the HFEA claim to be hearing us, but I don't think they really are. Consultations on issues important to them only....thats not a rounded perspective is it

I have engaged fully with the HFEA to answer questionnaires, provide consulation responses etc over the past few years....depressingly enough I don't think patients have made much progress in getting their voices heard in that time.....and I am not convinced I see Lisa Jardine being the person to change it.

Sorry for the negativity - but its how I feel.

Hun xx


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## AmandaB1971 (Feb 19, 2006)

Chocolate Button said:


> I also hope her sisiter was happy for her to mention her clamidia on radio and that they had fertility treatment.


You also had me in fits of laughter because about 6 months ago I did a radio interview as a member of FF and while doing it they intercepted me and asked me to go on BBC News 24 and I mentioned twice during that interview that we had male factor problems. When it was over DH said "thanks for announcing to the world on national telly that I'm jaffa!!!!"  

Axxxx


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## siheilwli (Jan 18, 2006)

Gotta laugh   else we'd cry!


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## Chocolate Button (Jan 1, 2008)

Chocolate Button said:


> Women with infertility was mentioned several times throughout this interview. What about men with infertility. I really is a one sided condition. Never once did she say couples with infertility issues or male factors contributing to infertility.
> 
> I also hope her sister was happy for her to mention her chlamydia on radio and that they had fertility treatment.


Glad I made you all smile, but I bet her sister isn't smiling at her tonight. 

Probably more like this


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## roze (Mar 20, 2004)

I was very hopeful at the prospect of a new chair however am also disappointed at the choice of this person and also disappointed at my own optimism that there may at last be a voice for all of us who have had /have fertility issues.
I always wonder why they pick on cancer for comparative arguments. Perhaps because it tends to heighten emotions and therefore comes in very handy.  Unlike Tony, I do not think that a lot of cancer sufferers have hope, as there are very few cases and types of cancer in which the condition is completely cured, and hence treatment is really only delaying the inevitable in order to give someone quality of life for a lot longer. To be brutal, and I hope that no one is hurt or offended by my comment, as I am being devils advocate here, one could effectively argue that until there is a cure, there is no point in pouring money into something when the statistical probability of either enhancing quality of life or enhancing longevity is low.

Personally I do have a lot of support for the IVF v cancer argument in favour of cancer and other serious physical illnesses but it is hardly case that a budget for alleviating the effects of cancer is greatly influenced by NHS funding for fertility treatment ie money for one is not taken from the other.  The bulk of NHS funding also does not go towards cancer treatment- there are a range of other illnesses and conditions that are not life threatening that receive huge amounts of funding. Over the years I have had benign moles and skin tags removed on the NHS-a cosmetic procedure- it was very nice to have it but I was surprised that so much funding went into it. 

Several facts remain; 
1) The state of the fertility industry in this country is absolute rubbish compared with most European countries with costs disproportionate to the value or performance of clinics. 
2) The HFEA do not seem to deal with any quality assurance across clinics in respect of service or outcomes, or have any clear plan to do so, apart from random invasions of clinics such as the ARGC which was handled disgracefully.
3) I have also handed over over £400 to them for fees for three IVF treatments plus a further £100 to go on a donor waiting list for which I have received absolutely no joy or written contact in 4 years. 
4) Women are indeed generally leaving it to their later years to have babies in general. This is because due to extortionate cost of living we cannot afford to have them earlier which stacks the odds against many women and couples from the outset. The new legislation about maternity leave and parental leave makes things a lot easier however we are still a long way from being family friendly in the UK. Women/people need to be encouraged and supported to have children when they are younger which will reduce some, but not all of the problems experienced. This is a society thing- in Iceland they are very encouraging of younger parents in order to maintain populations and there is no stigma attached to single or unplanned parenthood.  This is an issue on which I would hope, one day, that would attract the attention of the HFEA in a manner that results in some societal change.

I have to honestly ask, as I must be dim, what exactly is their purpose?


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## Anthony Reid (Jan 1, 2002)

Hi Everyone,

I received the following this morning which responds to a couple of concerns within this thread.

Regards,
Tony

Hi Tony

I just wanted to correct a couple of misunderstandings about charges to the HFEA that I noticed on http://www.fertilityfriends.co.uk/forum/index.php?topic=137153.15

The HFEA does not charge any individual patient for fertility treatment. All clinics, both NHS and private, pay a licensing fee to the HFEA towards the costs of being regulated and inspected, based on the number of treatments they carry out.

Some private clinics chose make their patients pay for their proportion of the clinics licensing fee, passing this on to patients as an additional item on the bill. Others include this cost in their overall treatment fees, just as clinics incorporate the other costs of running their establishment, such as gas and electricity bills.

The HFEA has no role in the recruitment or supply of donor sperm, eggs or embryos. We certainly do not charge clinics or patients to go on 'waiting lists', or any other such fees, particularly as we have nothing to do with the supply of donor sperm or eggs.

By the way I found on the Cancer Research UK website stats that put the likelihood of surviving cancer into a fuller context - this can be found at http://info.cancerresearchuk.org/cancerstats/survival/latestrates/

Hope this is helpful.


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## Sasha B (Jan 24, 2005)

I feel I need to reply to some of the points that Lisa Jardine raised in her reply.

With regards to clinics charging for patients to go on a waiting list, the HFEA may not be the one charging but as a regulatory body, surely part of its remit is making sure that clinics are delivering the services which they are promising to the patient. Now, I know waiting lists for donor eggs, sperm and embryos are quite lengthy in this country compared to many other places in Europe but I think it is disgraceful for a clinic to take someones money to go on a waiting list and not even contact them periodically to update them on where they are on that list. Surely the HFEA should not allow this sort of thing to occur particularly over such a long period as my friend Roze has had to endure.

Secondly, I don't agree that cancer survival rates would necessarily be affected by cutting funding to IVF. Its not as simple as that. The NHS carries out a whole range of treatments and procedures, not just IVF and cancer treatments. As someone, whose husband has fought cancer, I know a little bit about this. There are other factors that affect survival rates as well such as at what stage the diagnosis was made and the cleanliness in hospitals. I agree wholeheartedly that no cancer patient should ever be refused treatment but the postcode lottery in the NHS and shortage of funding is not just down to the fact that it now offers couples struggling with fertility issues one cycle of IVF. I feel that by making it a case of cancer vs. fertility it belittles the genuine suffering of those with fertility problems and isolates the very people which the HFEA is supposedly there to assist.

Sasha


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## Anthony Reid (Jan 1, 2002)

Just a couple of points.... the above response in my post was not from Lisa, but from our contact (Alan Tipping - Stakeholder Relations Manager) at the HFEA.

Secondly, the part about preventing clinics charging to go on waiting lists - from my understanding, The HFEA jurisdiction does not extend out to before your cycle has begun. What you have identified is simply clinics wanting to get there hands on your money as quick as possible.


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## Guest (Apr 18, 2008)

I hope, like any other senior person in any half-decently run organisation, that Ms Jardine will read the feedback about her written here as it is very very powerful......

xxx


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## roze (Mar 20, 2004)

I hadn't realised so much about the additional fee to the HFEA- as far as I was given to understand at the Lister, there was a flat fee of £100 imposed by the HFEA for each course of IVF. I am positive this is how it was always presented to me. I think I will look through my old paperwork and drop them a line to clarify. Its probably time I also retrieved my other £100 for the donor egg waiting list, as I have absolutely no idea where I am on this or what they are doing for me. 

roze  x


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## Anthony Reid (Jan 1, 2002)

Good luck with getting your money back.

I'd be interested in hearing if clinics are doing this in general - or if its just the Lister.

Tony
x


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## Betty M (Dec 6, 2005)

When we have talked about this in the past it looked like some of the NHS clinics who do self-funded treatment (like the Hammersmith for eg) don't charge the HFEA fee separately but most of the private ones do.  Just checked a couple of websites - The Bridge, LFC, London Womens Clinic, UCH, Nurture all have the HFEA fee separately. ARGC dint have it on the price list so presumably part of the package. Personally I think clinics should absorb the cost like any other overhead. 

Betty


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## Carbonel (Feb 29, 2008)

All four of the clinics I contacted charged the HFEA fee as a seperate item. To be honest whether they pass it on as a discreet item or as part of the package the result is the same. We end up paying the fee and it would be a bit disingenuous for the HFEA to say they're charging the clinics not us, as I don't think even the HFEA can see the private clinics as altruistic organisations who are going to cut into their own profit margins to pay it !. Again I'd rather see the fee as a discreet item so that I can see exactly how much the HFEA is costing me personally and be able to demand some value for the money!


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## Betty M (Dec 6, 2005)

I think the issue is that competition being as it is most clinics seem to have roughly similar baseline treatment fees so the clinics who charge separately for it are basically taking it as profit  - that is why I think it is wrong. My old clinic which didn't charge it separately is also a lot cheaper than many so definitely not taking it off the patients in other ways. Legally it is a charge for regulation and inspection of the clinics though and not a fee to be paid by patients to pay which is why I don't think they should pass it on to us as a discrete item.  It would help if the licence fee wasn't worked out per treatment cycle started though - I can't see that it bears much relationship to the cost of regulation how many cycles a clinic does.


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## roze (Mar 20, 2004)

_The waiting list for donor eggs in the UK is long. The supply of eggs is dependent on benevolent women donating their eggs. _ 
The above is a direct extract from the Listers website. It doesn't give any timescale.

The updated price list also states £104.50 for the *'HFEA FEE.' * To me, and I believe I have a reasonable grasp of English grammar and semantics- this suggests a direct levy of this precise sum by the HFEA, similar to the impression given to me by staff members over the years.

I thought back this morning to my years of treatment and to my horror I realised I have been on their egg recipient waiting list for almost 5 years- it will be that this July- not 4.

I am writing to them this morning and will let you know the outcome. I realise that this a little off topic for this particular thread so will post also on a more relevant thread.

all the best

roze


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## Carbonel (Feb 29, 2008)

Hi Betty, presumably your clinic would be even cheaper by about 104 pounds if it didn't have to pay the fee to HFEA, if they listed it separately this would be more clearly seen. I think the HFEA representative is splitting hairs when they state it's a charge to clinics not individuals as it amounts in reality and in actual effect to the individual as the same thing. All businesses pass on their costs to the customer IMHO, just look at the way banks operate base rate goes up, interest rates go up ( doesn't seem to work the other way LOL)  I think it's important for us to know how much we are individually contributing to the HFEA through these extra costs to keep in mind how accountable they should be to us!I wonder if this distancing attempt of the HFEA of the effect of the levy on the individual is also to distance accountability. So in effect we pay the money for an organisation which is not accountable to us!


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## Nikki2008 (Jan 11, 2008)

It does not matter whether or not the HFEA charges any individual patient!!!! The point is HFEA are raising a levy and not providing a good service in return.  

Every clinic passes this charge on to patients, it raises their costs and thus increases the cost of the treatment. 

IMO Alan Tipping's reply did his cause no favours nor did the interview that Lisa Chardine gave. It sounded like this job is an ego trip for her and that she has no understanding of the issues involved.


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## Carbonel (Feb 29, 2008)

Absolutely Nikki, I think your statement is spot on.


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