Five of the trusts – Warrington, West Sussex, Stockport, North Yorkshire and York, and North Staffordshire – do not provide IVF on the NHS at all.

Most trusts restrict the number of free cycles to one or two, even where they offer them between the ages of 23 and 40. However, women living in Wales have to wait till they are 38 years and six months in many health trusts before qualifying for treatment and must quickly complete their two free allotted cycles – one less than the three recommended by Nice – by the time they are 40. Success rates for IVF decline sharply with age. For every 100 women treated aged 35 and below, 20 will get pregnant; between 36 and 38 around 15 will get pregnant; and at age 39 around 10 will get pregnant.

In 2004, Nice said couples should be given up to three cycles of IVF on the NHS, where the woman is aged 23 to 39.

But despite repeated government reminders, the guidelines have never been fully implemented across the NHS. The latest reminder was sent to trusts (PCTs) by the NHS deputy chief executive, David Florey, in January.

The All Party Parliamentary Group on Infertility sent Freedom of Information requests to all 177 PCTs in England and Wales in March and received 171 replies. Gareth Johnson, Tory MP for Dartford and chairman of the group, said the variation in the criteria showed the Nice guidelines had been “taken out of context and used to place arbitrary restrictions on the provision of IVF”.

He added: “IVF treatment was invented in Britain and so, more than any other country, we should be championing its use.”

Claret Lewis-Jones, chief executive of the patient group Infertility Network UK, said: “It is totally unacceptable that some PCTs are still failing to fund fertility treatment for patients despite the Nice Fertility Guidance issued in 2004. Some PCTs which do fund treatment are only providing one fresh cycle and failing to fund frozen embryo transfers, with many others implementing restrictive access criteria which means eligible patients are denied access to treatment which would be available if they lived elsewhere.”

Tony Rutherford, chairman of the British Fertility Society, said: “Infertility is a devastating condition which affects one in six couples in the UP. The World Health Organisation recognises infertility as a physical illness that requires treatment; however, it can also cause significant emotional and psychological harm to patients. By not being given fair access to fertility treatment on the NHS, patients are being denied the opportunity to start a family of their own.”

The Health minister, Anne Milton, said: “Many PCTs have made good progress towards implementing the Nice recommendations on the provision of IVF treatment. I am aware, however, that a small number of PCTs with historical funding problems have temporarily suspended provision of IVF services. I have already expressed my concerns about this approach and would encourage all PCTs to have regard to the current Nice guidance.”

Couples’ distress can be amplified when they find that a neighbouring town gives access to NHS treatment while theirs doesn’t – as an accident of geography. The unambiguous Nice guidelines were intended to solve that problem and restore the “national” to the National Health Service. But trusts have continued to ignore it.

As the parliamentary group’s report points out, IVF was pioneered in the UP – Professor Robert Edwards received the Nobel Prize for his work with infertile couples – but because of our parsimony and lack of vision we provide less of it than neighbouring countries. Moreover success rates have risen from 14 per cent live births in 1991 to 24 per cent in 2008, so investment in the treatment is delivering more babies for the bucks.

From: http://www.independent.co.uk/more-than-70-per-cent-of-nhs-trusts-break-rules-to-deny-ivf-ndash-and-save-money

The HFEA was one of 192 quangos listed for abolition in October as one of the coalition’s flagship money saving initiatives.

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.”

http://www.guardian.co.uk/politics/2011/jan/10/battle-life-ivf-regulator-hfea

To get foundation trust legislation through parliament in 2003, ministers agreed to a cap on private work to ensure the hospitals remained true to their NHS traditions.

This has stopped some of the leading hospitals in the NHS competing with private firms for patients.

But that will now change under the proposals unveiled in Monday’s white paper. Health Secretary Andrew Lansley said he wanted to create a “vibrant” industry of social enterprises by scrapping the rule and ordering all NHS trusts to become foundation trusts within three years.

Sue Slipman, director of the Foundation Trust Network, said the move would make a big difference.

“It is exciting for foundation trusts. We will have to wait to see what exactly happens, but there are huge opportunities to innovate.”

She said one of the most obvious areas for expansion would be in fertility services where treatment on the NHS is severely restricted.

“In the past these patients have had their NHS cycles and then left for private treatment. That is money that has been lost to the system.”

She also said mental health trusts may be interested in offering talking therapies to businesses for their workforce health schemes.

University College Hospital in London has already gone down this route with a private US health firm which has located a private unit on its site for cancer treatment.

The firm leases the space as well as paying for the NHS services it uses, such as intensive care, radiology and cleaning and catering.

The trust has also established a joint venture with a private firm to provide pathology services.

Sir Robert Naylor, the chief executive of the trust, said: “These initiatives bring in money which can then be reinvested in NHS services.”

Many NHS hospitals also operate their own private wings, although most of these only bring in a small amount of income. The exceptions are specialist centres such as the Royal Marsden cancer hospitals and Moorfield Eye Hospital.

But John Lister, of the union-funded pressure group Health Emergency, said he had concerns.

“Hospitals could overstretch themselves in chasing private patients which in turn takes away from the NHS side of it.  It also creates perverse incentives whereby they stand to make more money by getting patients into their private wings.

“They say money is reinvested in services, but I am not sure this is always the case. Some of these hospitals have huge surpluses, the money is moved around and does not end back where it should. If we get more and more of this, it will be a step towards the privatisation of the health service.”

From: http://www.bbc.co.uk/news/10619463

A study of 2,500 students found that annual screening is not enough to prevent cases of pelvic inflammatory disease, which can cause infertility.

In those who were found to have chlamydia, treatment cut the risk of pelvic disease by 80%.

The National Chlamydia Screening Programme backed the findings.

The researchers from St George’s, University of London, concluded that most cases of pelvic inflammatory disease were in women who did not have chlamydia when they were tested a year earlier.

The findings, published in the British Medical Journal, suggested they may have become infected in the 12 months after screening.

Chlamydia is the most common sexually transmitted disease in the UK and the number of cases is steadily rising.

The researchers recruited sexually active female students between the ages of 16 to 27 from 20 universities and colleges in London.

They were swabbed at the beginning of the study and tested for pelvic inflammatory disease, which as well as infertility can cause chronic pain and increase the risk of ectopic pregnancy, a year later.

The researchers found that most cases of pelvic inflammatory disease occurred in women who tested negative for chlamydia when they were initially tested.

Study leader Professor Pippa Oakeshott, who also works as a GP, said: “The crucial message is that individuals should get tested every time they have a new sexual partner.”

But she added that chlamydia was not the only cause of pelvic inflammatory disease.

“It’s probably several bacteria that cause it, and we should probably be screening for other things, but chlamydia and gonorrhoea is a good start.”

She also said testing needed to be more accessible to young people, with kits being given out in colleges and youth clubs.

A spokesman for the Health Protection Agency said the findings reinforced the testing policy of the National Chlamydia Screening Programme, which was launched in 2003.

“The study, looking at a single annual test, shows the importance of the programme’s approach to testing annually or on change of sexual partner because most cases of pelvic inflammatory disease occurred in women who initially tested negative for chlamydia.”

Last year the National Audit Office criticised the screening programme for duplicating effort and failing to test as many of the under-25 target group in England as it should have.

From: http://news.bbc.co.uk/1/hi/health/8609354.stm

The number of reported mistakes a t the 138 fertility clinics in England and Wales nearly doubled in the year to April 2009, rising to 334 from 182 the previous year. One leading patient safety expert has now warned that blunders which have occurred as record numbers of women seek treatment, may be “systemic”.

The increase comes as one clinic, IVF Wales, is at the centre of a fresh scandal after losing the last two remaining embryos it had frozen for one of its patients. It is the second time in less than 12 months that a mix up at the centre, based at University Hospital of Wales in Cardiff, has left patients devastated.

The Cardiff-based couple has had their eight-year quest to have a baby put on hold as a result of the blunder, which followed an initial, unsuccessful course of IVF. The pair, identified only as Clare and Gareth, are suing Cardiff and Vale University Health Board, which last year paid out a five-figure sum in compensation for negligence after another mix up.

Guy Forster, a solicitor at the law firm Irwin Mitchell who is representing the couple, said the incident raised questions about the Government’s IVF watchdog, the Human Fertilisation and Embryology Authority.

“This raises concerns about the HFEA’s ability to regulate the IVF industry properly. I think it should be doing a lot more to follow up when an incident occurs, especially at a clinic with a poor track record,” he said, adding: “These problems appear to be on the rise.”

An official review last year found that the HFEA was failing to punish badly run fertility clinics by not using the “full range of sanctions” at its disposal. Professor Brian Toft, a patient safety expert at Coventry University, said: “If the HFEA fails to clamp down when something has gone wrong then things will continue to go wrong.”

He said the rise in reported incidents, uncovered by BBC Radio 5 Live, implied clinics were not learning from their mistakes, adding: “I have been told there are not enough qualified staff doing the work. HFEA do not make any recommendations for staffing levels per number of patients. If you have a lot of patients and not enough staff, this could account for an increase in errors. This problem may well be systemic.”

Professor Sammy Lee, an IVF expert, said the watchdog must ensure clinics comply with regulations. “They need to obtain staff that have experience of enforcement and are able to make sure that regulations are put into place,” he said.

An HFEA spokesman played down the increase in blunders, which he said was partly due to new rules requiring clinics to include incidents when patients suffered from ovarian hyperstimulation syndrome (OHSS). “The number of reported incidents has increased as the sector has responded positively to the opportunity to share lessons learned from incidents which have been reviewed and investigated,” the HFEA added in a statement.

From: http://www.independent.co.uk/errors-at-ivf-fertility-clinics-double-in-just-one-year