24 September 2012
ByAppeared in BioNews 674
Opening the discussion, Paul Whitbourn, head of the Arm's-Length Bodies Transition Programme at the Department of Health, reminded attendees that the 'bonfire of quangos' was started a long time ago in response to the national financial crisis. The movement is part of the wider issue of regulation of health and social care services, he said, and he questioned whether there's really a difference between the services the HFEA provides and other NHS services that are considered as 'routine'.
Financially, something needs to be done about duplication of regulation, he insisted. Ninety percent of the centres the HFEA regulates are already regulated by the Care Quality Commission (CQC), so it made sense to look into transferring the HFEA's functions to the CQC. He stressed the importance of the consultation and made it clear that there is a desperate need for change, with no 'do nothing' option.
Dr Sue Avery, director of the Fertility Centre at Birmingham Women’s Hospital and researcher at the University of Birmingham’s Stem Cell Centre, spoke next, and again reminded us of the history relevant to this debate. She said that IVF - a responsibility of the HFEA - is now over 30 years old and has grown from a controversial and groundbreaking procedure to an accepted and established one.
This formed the basis of Dr Avery's argument - the functions the HFEA regulates are not 'special', and patients don’t want to be treated differently from others. Accordingly, there is no reason to have a specialist regulator. Dr Avery argued that although Professor Lisa Jardine, Chair of the HFEA, says that IVF is at the 'sharp, pointy end of risks in our society', the evidence suggests otherwise. There are no more major incidents or actions for negligence in fertility treatment than in other specialities and essentially, we 'suffer with the same problem as other fields - we work with humans'.
Although Dr Avery conceded that concerns over dividing the HFEA were understandable, she said that there would be no 'loss of expertise', as medical expertise should come from outside the organisation. The expertise often referred to is in fact expertise in regulation, which is no longer needed to the extent that it was 20 years ago. Dr Avery ended by saying that the HFEA does not 'create life', but provides 'services to patients', and we should have regulation to reflect that.
Veronica English, head of medical ethics at the British Medical Association, agreed to speak in place of Frank Dobson, the MP for Holborn and St Pancras, as he was delayed on parliamentary business. English started by speaking about the CQC and outlining some of the doubts over the level of public support and the capability of that organisation to deal with the specialist functions of the HFEA. She pointed out that transferring functions to another body would not reduce the fundamentals of the regulation, which will remain, but would only change the regulator.
English argued that if the goal is to streamline and reduce bureaucracy, the answer is not to abolish the current system but to reform it. The aims of the current proposals can still be achieved within the HFEA. This option has the added advantage of retaining the 'brand' of the HFEA and the public confidence that has developed over the years. The HFEA is not perfect and must change, English admitted, but a transfer to the CQC doesn’t make sense. We’d be taking a 'leap of faith' that the CQC would be ready to deal with the HFEA functions by 2015.
Natalie Gamble brought a fresh perspective. As a solicitor at Natalie Gamble Associates which specialises in fertility and parenting law and the mother of donor-conceived children and an egg donor herself, she has experience of the HFEA as a patient. She admitted that she is largely unconcerned by talk of efficiency or financial savings, and that her primary concern is for patients and users of the HFEA's services.
Raising a topic that had not yet been mentioned, Gamble talked about data protection. Any discussion cannot be centred solely on costs, she said; the welfare of the patients and children should be paramount. She added that the cases the HFEA deals with are actually getting more complex, in that the families they serve are less traditional and come with a host of issues that require the specialist knowledge of the HFEA.
Complex cases need proper safeguarding and the services that the HFEA currently provides need to be delivered to patients appropriately. We need to 'take off the narrow goggles of cost efficiency', Gamble warned.
Lastly, Professor Alison Murdoch spoke. Professor Murdoch is the Head of the Fertility Centre at the Newcastle Centre for Life and professor of reproductive medicine at Newcastle University’s Institute of Genetic Medicine. She stated that change will not happen if the HFEA remains while everyone agrees that change is necessary.
Professor Murdoch argued that the HFEA's functions are now routine and low risk. She added that many go abroad for IVF treatment because of over-regulation in the UK; IVF accounts for only 1.3 percent of operations on the NHS and there is no need for a specialist regulator for such a small group.
Professor Murdoch reminded us that there are now IVF grandmothers, and said that over the years the HFEA has become more interested in self-preservation than anything else. When asked to change the organisation has done so, but only superficially. These changes were to 'cover bare patches in the carpet, but now it’s time for a new carpet'.
The 'specialist knowledge' that is so important to retain isn't inherent to the HFEA, Murdoch said, and many patients are in fact confused by the organisation; they may have heard of it, but they don’t know what it does. Murdoch closed by telling us that it’s time to 'wipe the blackboard clean' and achieve the necessary changes by transferring services to the CQC.
It was then time for questions from the audience, who engaged well with the speakers and the chair, Peter Braude, emeritus professor of obstetrics and gynaecology at King’s College London. There was general support for Natalie Gamble’s considerations of patient safety and child welfare, which led to discussions concerning ethical issues and how these were debated. One audience member asked whether we need an organisational body to do this or whether it could be left to Parliament.
Another audience member asked about the costs of transferring and running the HFEA functions through the CQC, and possibly other bodies. Questions were also asked about the ability of the CQC to perform these functions, with particular concerns surrounding information management and the importance of accurate and available information. There was also the suggestion that the CQC needed 'time to settle' into its role before taking on new challenges.
We then heard something that hadn't been raised by the speakers - the ability of the CQC and other organisations to deal with the press at the same level that the HFEA does. The concerns centred around the loss of the 'experienced and specialist' press officers who deal with 'sensationalised' issues very well. Another audience member commented that the consultations that the HFEA conducts allow the public to take an active part in the discussions, and that might be lost if the proposed changes went ahead.
Much of the discussion centred around the exact functions of the HFEA and the need to establish all of the facts before taking large, costly and potentially damning steps. An audience member commented that the 'endless reorganisations' imposed by Government more often than not cost more than expected and fail to achieve set goals. This point was echoed by Frank Dobson MP who joined the discussion part way through.