Before I begin grumbling, I should point out that I recently became a mother for the first time. As I write, my seven-week-old daughter Lily is sitting in her rocking chair, looking indignant and wondering why she hasn't got my full attention. Having come face to face with the prospect of never having children with my husband, Mark, I realise that, when it comes to IVF, we are the lucky ones.
After just one course of treatment administered over two months early last year, I became pregnant. Certainly, it might seem churlish to complain in the face of our good fortune. But I believe that, even with the inevitable physical and emotional strain that comes with fertility treatment, the process needn't have been so fraught.
I was treated at the controversial Assisted Reproduction and Gynaecology Centre (ARGC), the Wimpole Street clinic presided over by Dr Mohamed Taranissi, which was the subject of a Panorama investigation last night, and which is at the centre of an inquiry by the Human Fertilisation and Embryology Authority.
In the same way that one might expect funeral directors to be solemn in their work, I imagined IVF doctors and nurses as ministering angels, always on hand with kindly advice and a soothing cup of tea. Perhaps I was naive.
Waiting apprehensively for our first appointment at the centre that boasts the best live-birth rate in the country, I couldn't help but feel disappointed. Where were the bright white coats etc etc, the designer furniture, the reassuring smiles and the cups of tea? Instead, we were greeted by a dingy waiting-room packed to the rafters with grim-faced patients, and a reception area littered with files and manned by harried-looking staff. No one talked in the waiting area; the only noise was the whirring of the credit-card machine next door. Most people had come armed with books or laptops. It was clear that they expected to be there for some time.
Eventually, an hour after our allotted appointment, we were summoned by the doctor - not Dr Taranissi - and he gave new meaning to the word brusque. He had, he said by way of introduction, done four consultations already that morning. Having looked at the report from our GP and asked how long we had been trying to get pregnant, he recommended ICSI - intra cytoplasmic sperm injection - a type of IVF where the best sperm is isolated and injected directly into the egg.
After going through the procedures and assorted drug protocols - all of them complex and daunting - he asked if we had any questions. "Yes," I said, already feeling overwhelmed and trying to gather my thoughts: "I don't know where to start." "Well, you'd better hurry up because I've got more people waiting," came the curt reply.
I was so angry that I couldn't speak. Here we were, a couple in an emotionally vulnerable state and about to agree to a procedure costing thousands of pounds, being treated like ignorant time-wasters. As a result, Mark and I spent the rest of the day deliberating whether or not to continue with the clinic. I didn't relish the thought of intimate and potentially painful procedures being performed by apparently callous doctors, but in the end we couldn't argue with their statistics. Tea and sympathy wasn't going to give us a baby, so we decided to persevere.
As it turned out, the initial consultation was a breeze compared with what was to come. The first round of drugs, designed to shut down my natural hormones (in effect putting me through the menopause), brought with it hot flushes, temper tantrums and headaches. I was already wondering if I would get to the end of the treatment without baling out. Two weeks later came the artificial hormones - injected nightly by Mark - bringing more headaches, along with vomiting and fainting spells. On several occasions I called the clinic to see if this was normal. "Everybody's different," I was told briskly. "Just drink more water, at least five litres a day."
Then there were the endless blood-tests - taken daily to assess fluctuating hormone levels - and the gruesome medical procedures. Before the second wave of drugs began, I was told I would need a hysteroscopy, an operation carried out under anaesthetic that involved mapping out my uterus, and for which we would have to shell out £1,100.
As we were already paying thousands for the drugs and the IVF procedures, we wondered whether this was really necessary. Was my uterus really so unusual that the doctors had to draw themselves a diagram? But after more deliberating, we decided that Dr Taranissi probably knew best and we would plough on.
Mark and I arrived, as instructed, at 7am on the allotted day. My name wasn't called for another three-and-a-half hours, by which time we were tired, hungry and irritable. Eventually I was shown into a tiny, windowless room in the basement and told to take my clothes off, don a backless paper gown and wait to be called. As I sat, feeling nervous and exposed, two members of staff came in. "Don't mind us, this is our changing room," they said breezily and proceeded to bitch about a colleague who hadn't showed up the day before, leaving them to process an increased number of embryo transfers.
I was appalled. The last thing I wanted to think about was staff rushing through procedures that could make the difference between success or failure, baby or no baby. Eventually I was wheeled off on a trolley by the anaesthetist. What seemed like seconds later I woke up at the end of a long line of women on trolleys, all in different stages of consciousness, and with cramp in my abdomen. I felt like I'd woken up in a morgue.
The nurses were kind, though they were clearly trying to get us through as quickly as possible. A mere 20 minutes after coming round, I was given a cup of tea and a biscuit and sent upstairs to await my next prescription. There I found the waiting room crammed, patients queuing in the corridors, and Mark, who had long given up his seat, acting as doorman to the flow of patients coming in and out.
Feeling nauseous and shaky, I perched on the stairs, cramming myself up against the banisters so other patients could get up and down. It wasn't until Mark quietly threatened staff with a river of vomit down the stairs that he was given my prescription and was able to take me home. I went through a similar process a few weeks later when it came to retrieving my eggs - the windowless room, the anaesthetic, the trolleys and then out. I've experienced more agreeable bedside manner while having my legs waxed.
Since completing the IVF, I have discovered that we were not alone in feeling patronised, intimidated and alienated by those who were treating us. Elizabeth Smith (not her real name), a 34-year-old woman now pregnant after three rounds of treatment, was so dispirited by the conditions at the ARGC that, after four consultations including a traumatic internal examination, she dispensed with their services and went elsewhere.
She and her husband had been trying for a baby for two years before they sought Dr Taranissi's help. "We arrived at the clinic to find a man complaining at reception because he had been waiting for an hour and a half, so our first impressions weren't good," she says. "After several consultations, each costing more than £100, I had to have an internal scan to check that I was ovulating. I was told to go behind the screens in the doctor's office and get undressed. There was no sheet to cover myself up, and the bin was overflowing with tissues.
"The doctor was abrupt, clearly in a rush, and kept using medical jargon that I couldn't understand. I left in tears. A few days afterwards, I called them to make an official complaint but suddenly I couldn't get through. I knew then that I wouldn't be going back."
At her second clinic, she found the staff to be considerably kinder. "The place was a bit scruffy but they couldn't have been nicer and the feeling I got was completely different. They were kind, caring and considerate and explained everything. We immediately felt a lot more informed. I felt they really understood the emotional difficulties of going through IVF. At the ARGC, it felt like our emotional needs were completely ignored."
Eva Howells (not her real name) became pregnant on her second cycle. She also remembers being startled by some of the practices at the ARGC. "The first shock was walking into the building and finding a backlog of 15 people all waiting to speak to someone. The waiting times were ridiculous. When we finally got to see a doctor, it felt like he couldn't wait to get us out the door. It seemed particularly bad given that this was a clinic just off Harley Street, and the most expensive in the country. It was obvious that they had a lot of patients on their books and had no time to be sympathetic."
By her second cycle, 33-year-old Eva and her husband were questioning the clinic's methods. "We began to wonder if all the drugs were really necessary. At times, it seemed more a case of just throwing everything at us in the hope that some of it might work. After the first failed cycle, they tested my natural killer cells to see if my body was rejecting the embryos. The results came back saying they were high, and as a result I've had four IVIG (intravenous immunoglobulin transfusion) treatments at a cost of £8,000."
Trust is something one should be able to take for granted when undergoing any medical treatment, though it was in short supply among patients at the ARGC. Many I spoke to - some on their third or fourth cycles - had begun to question the blood tests (costing between £40 and £120 a time) and the drugs they were given. It's also hard to trust a clinic with such a chaotic filing system, and that clearly has more patients than it can readily cope with.
Similarly dispiriting was the fact that few of the patients I met were prepared for the cost of their treatment. When I asked the doctor in our first consultation what we could expect to pay for ICSI, he shrugged and said it depended on how I reacted to the treatment. The average cost of a cycle of IVF across the UK is about £4,000, though at the ARGC, with the frequent blood tests, the hysteroscopy and the daily injections (which, despite my protestations, continued until 28 weeks into the pregnancy), our final bill came to a little more than £10,000.
With waiting lists for IVF treatment growing ever longer, it's clear that private clinics can get away with stinting on the personal touch. Ultimately, it's the live-birth rates that matter to them.
According to Gemma Wilkie at the Human Fertilisation and Embryology Authority, the UK's independent regulator of fertility treatment, getting feedback from patients can be tricky. "All clinics are required to have a proper complaints procedure, and they are required to offer counselling, though people can be understandably superstitious about complaining. They don't want to do anything that might affect their treatment. Sadly, the problems that arise can't always be gleaned from our inspection process, but we have spoken to the clinics about the importance of one-on-one care."
It should be stressed that this kind of complaint is being made about other IVF clinics. Last year, the HFEA formulated an online questionnaire for patients. In the final overview, three out of 10 people taking part encountered a lack of empathy and information and lengthy waiting times at their clinics, along with poor administration and costs not being fully explained. Although just over one-third of these patients registered complaints, 70 per cent of those did not feel that their complaint was successfully dealt with.
For Mark and me, the discovery that I was pregnant seemed little short of a miracle. We alternated between tears and laughter all day, and the stress and unhappiness caused by our treatment was immediately replaced by relief and gratitude. But any notion of sitting back, relaxing and enjoying the pregnancy was dashed five days later as I began to experience severe swelling and stabbing pains in my abdomen. Mark called the ARGC and arranged a scan for the next morning.
After a sleepless night, we arrived at our allotted appointment time and once again we had to wait for well over an hour. Our doctor this time was Dr Taranissi. Having listened to my symptoms, he picked up a plastic probe and started jabbing around inside my uterus. The pain was excruciating.
"It's not a problem," he announced. "Your ovaries have swelled up from the hormones. They'll go down on their own." Fearing that I might pass out from the pain, I asked if he could be more gentle. "You think that this hurts?" he said with a smile. "You wait until childbirth!"
That night the pain grew worse and my belly even bigger. Mark eventually phoned an emergency night doctor who didn't hesitate in calling an ambulance. After giving me a morphine injection to ease the pain, the doctors at our local hospital, the Royal Sussex County Hospital in Brighton, diagnosed me with OHSS (ovarian hyper-stimulation syndrome) and told me that my ovaries had swelled to 10 times their normal size.
My four days in hospital weren't pleasant, but I received more information, care and concern from the resident gynaecologists than from those at the ARGC whose expertise and time we had been paying thousands for. The long-term damage to my ovaries has yet to be assessed, though during my stay I was strongly warned against doing IVF again.
Looking back, I wish I'd had the strength to ask more questions during my IVF treatment. I wish I been more vocal when I felt, as I did on many occasions, that I was being patronised and brushed aside. Do I regret having the treatment? Absolutely not. A year ago, Mark and I thought we would never have a child of our own, but now we have Lily. For that, we feel like the luckiest people alive. It's just that it didn't need to be so hard.
IVF the Taranissi way
Anyone who thinks the market holds the answer to the NHS's ills should read Fiona Sturges' piece and weep. When patients are desperate and treatment is in short supply, clinics such as Mohamed Taranissi's have a licence to print money.
Taranissi runs Britain's most successful IVF clinic, the Assisted Reproduction and Gynaecology Centre (ARGC) in London. It has the highest success rate for patients and the highest earnings. He helps 54 per cent of women under 35 have babies compared to 28 per cent at other clinics, and he is reportedly worth £38m. Now the clinic is the subject of a Panorama investigation and at the centre of an inquiry by the Human Fertilisation and Embryology Authority.
Britain's 80 IVF clinics are licensed by the Human Fertilisation and Embryology Authority (HFEA), which monitors their performance and their adherence to the regulations. This is not an area where Taranissi performs well - his clinic ranks second to bottom of the league in terms of compliance, scoring minus 29 against an ideal score of zero.
It turns out he runs a second clinic called the Reproductive Genetics Institute (RGI). Using the Freedom of Information Act, Panorama obtained data showing that Taranissi treated some older women at RGI, where the birth rates are consistently lower than at ARGC. He said this was because they required specific treatments and denied that it was because it helped boost the success rate at ARGC. The programme also alleged that he offered unproven tests to women for which he charged hundreds of pounds.
The average cost of a cycle of IVF treatment is around £3,000 to £4,000, but at Taranissi's clinic it is £5,000. One 26-year-old woman featured in the programme was offered treatment that could have cost her £13,000 for a single cycle. On average, women require four cycles to achieve a pregnancy.
ARGC is under investigation by the HFEA. Taranissi's licence for RGI expired at the end of 2005 but the clinic is still operating, says Panorama, even though it is a criminal offence to run a clinic without a licence. According to Taranissi, the granting of the licence is a matter of legal dispute.
Angela McNab, the chief executive of the HFEA, told the programme that the "majority" of clinics in the UK complied well with the authority's standards, adding: "This hasn't been the case with this centre." Yesterday, in an unprecedented move against an IVF clinic, the HFEA obtained a warrant to inspect Taranissi's two clinics, and its officials went in with police officers.
Taranissi has rejected the criticisms, adding that he has co-operated fully with the inspection team. A statement said that he "wants to reassure all his patients that he will not let any of this affect the level of treatment and care they are receiving".
The HFEA has set up a helpline for people concerned about their treatment. Call 020-7291 8222 (8.30am to 5 pm), or e-mail email@example.comReuse content