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09 June 2006

The UK's IVF patients need a better deal on information about the costs of their treatment, the customer care they receive from clinics and in the access they have to treatments, Dame Suzi Leather, Chair of the Human Fertilisation and Embryology Authority will say in a keynote speech to the National Infertility Day event in London on Saturday 10 June.

Although the UK's 100,000th IVF baby, born earlier this year, highlights the achievements and skill of the UK's fertility treatment sector, Dame Suzi explains that there is still much to be done to make sure all treatment is up to the standards that people expect nowadays.

In her speech Dame Suzi highlights a number of problems for patients that the HFEA is aware of:

• More than one in three patients ends up paying more for their treatment than they expected
• Almost a fifth of patients gave their clinic a customer service score of 4 out of 10 or less
• The difficulties of access to treatment and problems in the supply of donor eggs and sperm

Dame Suzi says:
"The only reason the fertility sector exists is to provide patients with the treatment they need and so it is absolutely paramount that we have patients and patient views at the heart of what we do. We must always put patients' interests first.

"I want to see treatment for patients delivered in a safe way, carried out to high standards. I want to see proper access to treatment for patients. I would like to see the Government follow through on its stated desire to fully implement the NICE guidelines.

"I want to see patients being fully informed about infertility, not kept in the dark or fed misleading claims. Each and every patient should be in a position to make the best possible personal choice for them including information about cost.

"I want to see good customer care with clinics treating patients fairly and not like just ´another number' on an impersonal production line. And I want to see safety of treatments being paramount at all times.

"Access to treatment is probably the number one problem faced by patients. Unfortunately this matter is out of the remit of the HFEA – although you've heard my personal wish that better funding should be available.

"Most patients' experience of clinics and treatment  is positive and this is due to the skill, expertise, hard work and commitment of the teams working in clinics across the UK, but we must take criticisms very seriously. We asked patients to rate the service they received on a scale of 1 – very poor,  to 10 – excellent. 60 percent rated it as 7 or above but 18 percent rated their service as 4 or below.

"One common complaint is the lack of customer care or emotional support for patients. One patient told us ´At most clinics the service is very impersonal – it feels very much like a sausage factory – go round the IVF conveyor belt and if you're lucky it will work and you'll fall off, otherwise go the back of the queue and we'll see you on your way round again (oh and give us £5000 each time you go round)'.

Dame Suzi will also speak of the issue of multiple births, still the single biggest risk of IVF treatment.

She says: "We are currently looking at how we can make a workable and acceptable policy to further tackle the problem of multiple births and have brought together a working group of patients, experts and NHS staff to help come up with a solution.

"Finally, if the safest course of action for some patients is two embryo transfer - but one at a time - then NHS funding for a cycle of treatment should cover a fresh as well as a frozen embryo transfer."

Dame Suzi also spoke of the need for a national system of co-operation to tackle the very patchy supply of donor sperm across the UK.

She says: "The HFEA isn't responsible for securing the supply of donors but we do monitor the system and have a picture of the state of donation across the UK. A lot is spoken about ´a crisis' being caused by the Government's decision to remove donor anonymity. The evidence we have just does not back this up.

"We have seen a steady decline in the number of sperm donors for a number of years now. But there has not been a sudden drop in the numbers of new donors registering immediately after the change in the law.

"I think the big question is what are the clinics doing to tackle the problems of supply? They are the ones responsible for recruiting donors. If you look at the issues around sperm donors, for example, you get a lot of blame and not a lot of responsibility.

"How can one clinic have doubled its number of sperm donors in a year when it works under the same law as everyone else? When there is such a demand for donor treatment, how come only one in three of the UK's treatment centres is registered with us to recruit sperm donors?

"We also have evidence that some clinics are hoarding their supplies of sperm and refusing to release it to other clinics where patients need donor sperm for their treatment.

"I can't help feeling that patients needing donor treatment are being sold short by the fertility sector. We need to have a radical rethink and everyone involved needs to pull together. We need to see a national system of co-operation between clinics to tackle the problems of patchy supply and to better co-ordinate recruitment."

Ends

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Notes to editors

• The full text of Suzi's speech (57.2 Kb)

The HFEA is the independent regulator for IVF treatment and embryo research. Our role is to protect patients and the public interest, to drive improvement in the treatment and research sectors and to provide information to the public and policymakers about treatment and research.

The HFEA was set up in August 1991 as part of the Human Fertilisation and Embryology Act 1990.  The HFEA's principal tasks are to license and monitor clinics that carry out in vitro fertilisation (IVF), donor insemination (DI) and human embryo research. The HFEA also regulates the storage of gametes (eggs and sperm) and embryos.

Page last updated: 11 March 2009

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