- Professor Robert Winston has worked in fertility for 40 years
- Says many couples are being exploited by a grasping, unethical industry
- He believes that the government and NHS are not doing enough to help
Babies are noisy, deprive you of sleep, destroy free time and are extremely expensive. Yet we feel like melting when we see them: their wide, gummy smiles, the adorable way they curl their tiny fingers around your thumb.
This is not rational – it’s in our genes. The urge to reproduce is burnt into human consciousness. It is innate, instinctual, essentially programmed through evolution.
But what if you are infertile? I have spent nearly 40 years talking and listening to people devastated by their lack of offspring, believing they are not ‘proper’ women or not ‘proper’ men. We have made considerable strides in fertility treatment. But the sad fact is that more and more infertile couples are being exploited by an increasingly grasping industry that frequently ignores ethical standards. And neither the Government nor the NHS are doing nearly enough to help.
It is not only some doctors who are responsible. Many commercial practices, run by people who have little or no professional training, are offering homespun treatments that simply do not work.
As a doctor who has been so closely involved with fertility treatment, I deeply regret that in vitro fertilisation (IVF) has become so commercial. I had thought practitioners would be sensitive enough to realise that they were dealing with people at their most fragile.
Such is my anger that I felt compelled to write a book. It will no doubt be very unpopular with some of my colleagues because it is critical of so much medical practice. But my aim is purely to help people to ask their doctors the right questions and to understand the treatment they are offered.
I am proud that Britain led the way in pioneering IVF. But it has become immensely profitable – and the truth about its success rates is frequently hidden. Each IVF treatment is, on average, only successful in under one-third of cases. Of course, it can be repeated – at great cost, often with much anxiety. But people are led to believe that it is the only treatment available to them – and the most successful. This is utterly wrong.
There is excellent evidence that more than half of those referred to IVF could be treated as or more successfully by far cheaper alternatives.
If you went to your doctor complaining of chest pain and were immediately referred for open-heart surgery without proper investigation you would think: ‘What a dreadful doctor!’ That pain might be due to indigestion, chest disease, a sore rib, or a viral infection.
Fertility expert Professor Robert Winston feels that the NHS are to blame for not taking infertility seriously
But now the chances are that if you complain of infertility, you will be referred straight to an IVF clinic – where there may be no proper attempt at making a diagnosis.
To fail to find the cause of any symptom is bad, irresponsible medicine. Each cause of infertility – and there are many – may need a different course of action. IVF most frequently fails when the underlying cause is not first established.
The NHS is much to blame. So often, it does not take infertility seriously. The guidelines for treatment are laughable. As soon as possible, patients are shunted into the private sector.
Then there is the cost: unquestionably, IVF should not cost nearly as much as what is commonly charged – anywhere up to £5,000. Even NHS hospitals frequently make a profit that goes to support other services.
A fundamental problem is the fact the NHS, too, now operates a market. It charges not what the treatment costs to deliver, but rather what it hopes the market will bear.
The NHS is so cash-strapped that any profit is much sought after. As hospitals charge NHS purchasing authorities excessive fees, the number of treatment cycles that can be funded falls, leaving many couples limited to just one – although NICE (National Institute for Health and Care Excellence) recommends that up to three should be available on the NHS.
Patients failing one NHS cycle can in some cases be forced into the private sector, often into clinics operated by the same practitioners who treated them under the NHS. Here is real potential for a conflict of interest.
But worse is still to come. Private clinics now charge extraordinarily high fees, which are making some individuals immensely wealthy. The combination of the desperation of infertile patients, combined with the avarice of some practitioners, is steadily raising market prices.
Of course, there are many scrupulous, kind and ethical doctors in this field operating in excellent clinics. But often a kind of cartel exists. Each private clinic can easily assess what another charges and alter its prices. And with so many couples wanting treatment, and so many returning after failed cycles, there is little incentive to reduce cost.
The consequences are there to see. Several private clinics are even advertising on the London Underground, which I find worrying.
Various private practitioners are also increasingly making exaggerated claims in the media about procedures they have ‘pioneered’ which ‘offer new hope for childless couples’.
Sometimes patients are even paying for treatments that are merely unproven research procedures. And many claims are made for various new ‘miraculous’ advances marketed before serious randomised controlled trials have been completed.
Regrettably, the Human Fertilisation and Embryology Authority (HFEA) – the regulatory authority set up to protect patients – is woefully inadequate. It has done far too little to change what is charged both in the private sector and NHS.
It is ludicrous that an NHS cycle of treatment may cost £1,000 in some parts of the country and over £5,000 in others. And once in a private clinic, many couples find they pay far more than this by the time a single IVF treatment is concluded. Last week, I heard from a woman who had paid over £11,000 by the time she had completed her first IVF cycle.
And the costs for other services are eye-watering. A friend was recently asked for £10,000 just for donor insemination without IVF (the donor sperm was inserted directly).
It is ridiculous, for example, that some clinics may charge £300 or £400 for freezing and storing embryos for a year, when the jug of liquid nitrogen in which the embryos are stored costs a few pence and the flasks in which they are kept can be reused again and again. Tiny frozen embryos, invisible to the naked eye, do not occupy hugely expensive space.
The HFEA has repeatedly claimed it has no power to control fees, but this is nonsense. It has the most significant power of all, to remove a clinic’s licence to practise.
I have often complained about these practices in Parliament; ministers show concern but it seems difficult to persuade them to take any serious action. The HFEA is a very convenient body behind which they hide.
Where did it all go wrong? When I was first offered the post of Director of the Fertility Clinic at Hammersmith Hospital in 1980, a very senior consultant said to me: ‘Why would you want to work in the Futility Clinic?’
This attitude was common then; infertility was not seen as worthy of serious thought, and certainly not an area where there was a need for much better treatments. But in those days there were virtually no private clinics and we were all committed to try to help infertile couples wherever possible under the aegis of the NHS.
And as the Health Service had not yet developed its so-called internal market, we were nearly always able to provide a range of free treatments.
Professor Winston’s book, published September 10
If occasionally some patients had to pay it would be a realistic, genuine fee. That was how we were brought up to practise medicine.
As IVF became gradually more successful, any widely held ethical attitudes about fees got lost.
By 1986, more private clinics were established and it was soon obvious that there would be massive demand. Within a few years a great deal of money was to be made.
As only about one in three women get pregnant with a single IVF treatment, this massive income stream is easily supported. Not unreasonably, few people go through IVF once, believing that eventually they will get lucky.
It is time we took a much more careful look at how infertility treatments are being offered. For one thing, it is clear that there are a vast number of people who get pregnant naturally after IVF has failed.
In many of these cases, IVF was not the right treatment in the first place. What is frequently needed is wiser, unbiased advice about the best course of action.
It may often be a far cheaper treatment that works. And in many cases of so-called unexplained infertility, it is possible no treatment is needed at all.
Take the woman who wrote to me in desperation, having had three failed IVF attempts. She was having infrequent periods and was not ovulating. She was also overweight.
She had never been advised that her weight could be a factor. She lost a few kilos and started Clomid, a drug which stimulates the ovaries, costing around £20 per menstrual cycle. She conceived four months into treatment without any other therapy.
Another 35-year-old patient had seven failed treatment cycles, spending £33,600. It was only after a simple X-ray of her womb, costing £300, that adhesions were identified in her uterus. A simple 15-minute operation allowed their removal and within five months she became pregnant without further treatment.
Her first baby, a girl, was followed by two further children each about two years apart.
Unfortunately, womb X-rays are no longer routinely done. And inspection of the pelvis using a laparoscope, one of the most important investigations, is often avoided.
This is because NICE has recommended, with dubious wisdom, limited use of the laparoscope because of the cost. Yet this ‘cost-saving’ approach actually results in more patients having unecessary and expensive IVF treatment.
Consequently, surgical treatments for infertility are less frequently done on the NHS, in spite of the excellent success rates that can be achieved.
One of the most serious issues is the number of unproven additional treatments offered to make IVF much more successful. Nearly all of them are expensive and do not bear the test of scientific credibility. Few, if any, have undergone serious randomised controlled trials.
These include many immune treatments, various drugs like Viagra to help implantation, and embryo biopsy for genetic screening to help choose the ‘best’ embryos.
Meanwhile clinics may offer herbal treatments, courses of vitamins, aromatherapy, homeopathy, various Chinese remedies and acupuncture. The number of such treatments sold to desperate patients prepared to try anything is scandalous. None are regulated by the HFEA and none are proved to be effective.
It is a thoroughly depressing picture. But I believe we can turn the tide: there are many bright young doctors and embryologists in training who are equally concerned. With better research, we should find many ways of offering cheaper and more effective treatments in future.
In time we might look back – perhaps in 30 years – and say: ‘My goodness, were they really doing that?’ Hopefully by then exploitation of infertile couples will also be history.