Quangoing, going, gone..., a debate organised by the Progress Educational Trust and the Anne McLaren Memorial Fund highlighted the
diverse viewpoints on just what should happen to the Human Fertilisation and
Embryology Authority (HFEA) as the Government seeks to streamline health
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
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.
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
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
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.