IVF quango battles for it’s own life against closure
The HFEA was one of 192 quangos listed for abolition in October as one of the coalition’s flagship money saving initiatives. Three months after the formal announcement of its abolition, the authority is continuing its work and gently fighting a low-key, behind-the-scenes battle for survival.
Its office does not have the aura of a body that has been freshly culled. Staff are preparing for a general meeting in Cardiff, where the 2011-12 business plan will be agreed. Inspectors are reviewing recent inspections of IVF clinics. Employees are still pinning crayoned pictures by their children above their workstations and watering the plants.
A parliamentary committee’s withering conclusion last week that the government “botched” its mission to “reduce the number and cost of quangos” is met with no surprise by staff here, who remain bemused by the decision to close down their organisation.
News of the HFEA’s planned closure, and distribution of its functions to other organisations, has been greeted with dismay by doctors and research scientists, who warn that it threatens the government’s ability to make sound decisions about crucial ethical issues.
Of all the dull-sounding, bureaucratic bodies crossed out in a pen stroke last October, the HFEA has the least arcane function. Responsible for inspecting and regulating IVF clinics, it also deliberates on the ethical boundaries of creating life and using embryos for research, a sector that is developing with rapacious speed.
Anyone planning to undergo fertility treatment in the UK depends on the HFEA to ensure that clinics are safe. Children who have been born as a result of donated sperm or eggs may want to turn to the organisation to discover information about the donor.
Practitioners rely on the body to help set out moral guidelines: is it ethical (to give one example under consideration at the moment) to allow a woman to use frozen embryos left to her by her grandmother, which would result in her giving birth to her own aunt or uncle?
The HFEA’s chair, Professor Lisa Jardine, the high-profile and outspoken academic, has reined in any personal impulse towards protest or defiance, and is mounting a delicate campaign to ensure that the organisation can be preserved.
She insists that her job is to comply with what the government has ruled, but makes it clear that she will be working to promote an alternative, which would see the HFEA continue broadly unchanged, swept into the folds of another government-run organisation.
“It’s the most controversial area of medicine, apart from assisted dying. It’s the most morally difficult area, it’s the most carefully legislated-for area, and the most tightly regulated area. I’m totally committed to doing this job of regulating assisted reproduction, above all IVF and research on embryonic tissue,” she says. “My only aim is to keep doing that until someone else can do it properly.”
She believes the HFEA was included on the list of quangos to be abolished by accident. “I feel very passionately that this is a mistake,” she says, stressing that no steps have been made towards closure. “We’re nowhere near. We haven’t even started.”
Provisional Department of Health plans indicate that the HFEA’s functions are to be transferred and split between other DH bodies. None of the 79 staff members know whether they will keep their job when the quango is wound down, nor when that might happen. Employees, from computer technicians to policy experts, seem united in their loyalty to the organisation, and voice anxiety not only for their own job security, but for the ability of a restructured HFEA to perform the range of services it was created to provide. The staff are civil servants, not inclined towards intemperate expressions of outrage. Instead, their laments cautiously warn that the proposed course of action may prove to have been ill-advised.
In a side room in the quiet central London office, Peter Thompson, the HFEA’s director of strategy, says staff had not expected the body to be scrapped, because as recently as 2008 parliament had debated its role and there had been “almost no voices at all saying this organisation ought to be abolished”.
He says: “Having had that endorsement in 2008, from all sides of parliament, to have this decision only two years later did come as a bit of a shock”
At the last authority meeting the governing body agreed it was a “very difficult” process for staff and “asked that efforts were made to minimise their stress”. Someone has cut a slit out of an empty cardboard box, and stuck a label on it marked “Worry Box”, inviting colleagues to post their concerns.
“My job as one of the senior people here is to lead and manage people through that uncertainty. Keeping our focus on doing the job well, maintaining morale, keeping people’s spirits up,” Thompson says.
The bonfire of the quangos appeared to herald a straightforward, hard-nosed money-saving exercise. The reality is much messier. Only a few bodies are to be closed outright. The others will have their functions transferred to new bodies, at some uncertain point in the future.
Cabinet Office minister Francis Maude insisted last week that the axing would save “significantly more” than £1bn. However, the public administration select committee warns that the “current approach is not going to make significant cost savings or result in greater accountability”.
Ian Magee, a senior fellow at the Institute for Government (IFG), and co-author of Read Before Burning, a report into the closure of the quangos published last year, says that unless the functions performed by the organisations are also abolished, very little money will be saved.
“It’s not going to contribute much to the budget deficit reduction,” he says. Closing down quangos is a complex process, he adds. “You can’t just turn the tap straight off.”
Maude is confident that the correct decisions have been made. “We think the process has gone pretty well. All three parties fought the election with a commitment to reducing significantly the number of quangos. There is a uniform view across the political spectrum of the desirability of doing so,” he says.
On the decision to wind down the HFEA, he adds: “You have a very complicated landscape of health regulatory bodies. The view taken by the health minister was that there is scope for simplifying that operation and making it a much more efficient and streamlined operation.”
The government has said that the HFEA will continue working “for the time being”, but that its functions will be transferred by the end of the current parliament. Government officials are examining the “practicalities (and legal implications) of how to divide the HFEA’s functions between a new research regulator, the Care Quality Commission and the Health and Social Care Information Centre”.
But the announcement was so confused when it was made that many people – staff included – thought the closure would be immediate. On the HFEA’s website a notice states prominently: “You may have seen reports in the press that the HFEA ‘has been abolished’. This is not so.”
The notice points out that the government cannot scrap the HFEA without first introducing new legislation.
“At the moment, we have no – literally zero – idea of what the Department of Health plan is,” Jardine says.
With such a delayed death knell, staff were uncertain whether to be devastated or sanguine at the news. Paula Robinson, head of business planning, says: “The time frame was so long, I can’t say it really rocked my world. It’s not brilliant to hear that an organisation is going to be abolished, but if you hear that it is going to be a matter of years, it eases the pain. I am not sitting here wringing my hands. I am a change-friendly person.”
But one of the inspectors, who carries out regulatory checks on IVF clinics, was aghast. “I felt very worried. I have just bought my first house. My husband works for the NHS. Two jobs that are very uncertain,” she says.
In a proposal aimed at streamlining the bodies regulating medical research, the Academy of Medical Sciences today suggests that the HFEA’s research and ethical functions should be transferred to a new Health Research Agency. But any move towards splitting up its responsibilities is not welcomed by employees.
“I think that the decision ignored the fact that because all our functions are together in one body, that enables us to be a more intelligent, more efficient regulator,” Thompson says. “This body has dedicated people who know what they are doing. These are people who care about the sector they regulate and the patients. I think by having all of those functions in one place, we do a more efficient and intelligent job than by scattering those functions to other places.”
Policy manager Helen Richens leads a campaign to reduce the number of multiple births from IVF clinics. Historically, she says, doctors would transfer multiple embryos, but the health risks to the mother and the embryos were very high. Now, if the woman is under 40, doctors can transfer no more than two embryos; over 40, no more than three. The HFEA has imposed a 20% maximum multiple births target on each of the country’s 138 clinics, enforced with the threat of losing a licence.
“One of the reasons we are good at this is that we have the policy staff and inspectors, who are going and seeing what is happening; we hold all the data on all the fertility treatment in the UK, we can analyse it and monitor it, so when we make policy it is proper, evidence-based policy,” she says. “We will be moving from a world-leading model to something that is a less than gold-standard regulatory model.”
She adds: “I think I feel maybe a bit unappreciated. You do your job well, other countries look towards us … there is a collective feeling, what is the point of moving us on, breaking us up? It is not going to save money. If there isn’t a measurable benefit, what is the point of getting rid of this quango?”
The HFEA has an annual budget of £7m, only £2m of which is provided by the government; the remaining £5m is funded by the clinics, which pay to be regulated. The body charges clinics, both private and NHS, £104 for an IVF cycle and £52 for donor insemination.
Jardine, who has just been reappointed for a three-year term, hopes to be able to trim the amount needed from the government to around £1m. “There will be additional expenditure. There will certainly be no saving,” she says of the planned abolition. “We are incredibly cheap.”
Collectively, the senior management have taken a clear decision not to campaign noisily against closure. They point to the unsuccessful campaign mounted to save the UK Film Council, whose demise was announced at the same time. Despite the appointment of a PR adviser and the involvement of director Steven Spielberg, the abolition went ahead.
Instead, they set out the value of their work.
“Any couple can walk into any clinic in the British Isles and know that their IVF or other reproductive treatment has been fiercely vetted and that they will come to no harm. No person walking into a plastic surgery clinic has that assurance,” Jardine says.
Supporters of the decision argue that as IVF has become much more common in the 20 years since the HFEA has been operating, there is less need to regulate it so closely. Jardine disagrees.
“IVF is not routine. There are people out there who still think that we shouldn’t be doing any of what we are doing. Some of them have seats in the House of Lords.”
The issues are too ethically and politically explosive to be dealt with by politicians, she argues. “There are too many pressures on parliament, and civil servants are not trained to deal with those kinds of issues. I believe that these morally fraught issues must be held at arm’s length from government.”
Tags: IVF, maternity, nhs cutbacks, pregnancy, Quangos, red tape