Scrutiny (Part I)

Last week a number of my friends received visits from Social Services. Having begun with a few throat clearing questions, the social worker asked them whether they thought I was a child-abuser.

For those of you recoiling in horror, I should explain that P and I have applied for approval to adopt. The process in the UK is, as you would no doubt expect, bureaucratic and deflating. Social workers (for whom, as a profession, I have the utmost admiration) assume, correctly, that the great majority of prospective adoptive parents have already struggled through the mire of IVF. They also assume, again correctly, that those wannabe parents will be in the grip of at least some degree of desperation. This affects social workers’ behaviour in two ways. The first is that they believe you need careful handling and I describe our experiences below. The second, I will deal with in my next entry.

Social workers go on courses so as better to fathom the mind of those who have been through failed IVF. The perceived need for such courses arises from an apparent assumption that our minds will be as devastated and as difficult to pick through as an earthquake-hit hillside fortress. With the courses comes jargon:

Social worker: “Do you feel you have fully grieved for your dream baby?”

Moobs: “Do I feel I have whatnow?”

SW: “Grieved. For your dream baby”

M: “What dream baby?”

SW (looking sympathetic): “The child you dreamed you and P would have together”

M: “The only time we ever imagined what our own child would be like we concluded that it would be permanently grumpy and have an enormous monobrow. If you have one of those in stock we’re good.”

Since the social worker is taught that you will be damaged you cannot simply reassure them that you aren’t. That would be a sign that you were “in denial”. Nor, of course, can you sob uncontrollably into their lap. That would be a sign that you have not begun your recovery. You have to strike a delicate balance in which you persuade them that you have been very upset and are still upset but are somewhat less upset than you were.

It is also assumed that you will be naive about what adoption involves – that your dream child will have rubbed pixie dust in your eyes before evaporating away leaving a big pile of medical bills. From the outset, therefore, they are at pains to tell you just how harrowing and grinding an adoption can be. In our case, as natural pessimists, we had very little untrammelled optimism to dispel. Even if we had seen ourselves plucking an apple-cheeked babe from a social services mulberry bush and walking off towards the sunset, P’s many months browsing the Adoption UK website had put paid to that. Many of the entries might best be summarised thus: “Deary me, we seem to have adopted Satan”, followed by a slew of comments saying “Hang in there” and “Have you tried pressing a communion wafer onto their forehead?”

After four days of training during which social workers endlessly retiterate that anyone thinking that adoption will be anything other than hellish is not in their right mind, they then say “of course if you have any doubt at all about whether this is the right thing for you to be doing, you shouldn’t do it”.

Panorama – The Aftermath

The programme was indeed focusedon the clinic we attend. They made a number of criticisms:

(1) A 26 year old woman should have been told to keep trying naturally for another year but was offered IVF.

This did not trouble us much as we know we need IVF. Another undercover patient with an identical profile was given correct advice.

(2) The “Immunological” approach that he favours was unproven.

The clinic believes that where, as with P and I, implantation difficulties exist, the answer may be that the embryo is triggering an immune response. There are no double-blind placebo tests proving this treatment.

The clinic is perfectly frank about the lack of clinical proof of effectiveness. It is a question that I raised directly with the doctor we consulted with. He gave us a speech which we heard twice repeated on the programme tonight the essential elements of which are:

(a) All new treatments are for a period unproven;

(b) It might take so long to prove your chance would be gone;

(c) It would unfair to couples desperate for a child to give them a placebo on what might be their last chance of conception; and

(d) Double-blind tests are all bollocks and you can always structure a test to prove or disprove whatever you want.

I described this approach to P after our consultation as “quackery” which is exactly what it is. My eyebrows pretty much vanished under my receding hairline when the doctor tried to discredit all clinical trials. However, the argument is effective because boiled down its says “Ok this may well be snake oil but look at our figures – can you really afford to walk away from the chance that it might work?” It is effective because it taps into the rich vein of utter desperation that brought you to their door in the first place.

I cannot complain about their honesty though. We knew what we were doing. Frankly, I’ve read enough about the placebo-effect to want to play a hand in its famous last chance saloon.

(3) Because the therapy, which involves transfusion of human antibodies, is untested and because those antibodies can reach the child, the therapy may place the embryo at risk.

The good Doctor T admitted that this did “worry” him. This did suprise us as we had no idea there was any such risk involved. We certainly had not consented to it. He went on to add, in essence, that every treatment involves risk. The only point made to P had been that she had to be “comfortable” having human blood products transfused. She felt misled.

Again, to be scrupulously fair, we have encountered a failure to identify risks to us in other clinics so this practice is by no means unique.

(4) Before they start any immunological treatments you have a blood test that requires 18 vials of blood that are shipped to the States for analysis at a cost of £780 (about $1200).

The panel of experts that the BBC gathered to review the covertly obtained tapes opined that the test was entirely pointless. The blood was taken from “peripheral circulation” which, for the likes of you and me, means “the arm”. Apparently, there is little sensible relation between the blood in general circulation and that in the placenta. The analogy given was that it was like trying to count the number of black cabs in central London by looking at red cabs on the M25 (a large freeway that circles the outer edge of the city).

This is where I really began to growl. Our test results have just come back. It did not seem to me to be terribly likely that they were unaware of the difference in peripheral circulation and placental blood and this began to smack of fraud.

(5)  Test Results misleading

The 26 year old was told that the test had shown abnormal levels and she would be best advised to have IVF whilst being treated with steroids and human antibody transfusions (at a cost of anything up to £10,000 (about $15,000) a cycle). A pathologist tested the blood samples and stated that they were entirely normal.

Either that was a very bad mistake or it was out and out fraud. Either way it does not encourage us to put any faith in our result: one somewhat raised level indicated a need for steriod treatment.

But at the end of the day, what about their figures? They have a 54% success rate which is by far and away the best in the country – hence Dr T being worth £38 million. Do we care how much mumbo jumbo is involved and how much cash we have to spend unnecessarily if they can deliver a baby?

The next point was little more than an insinuation: that the people with lower chances of success are shipped around the corner to a sister clinic which has substantially less stellar performance figures. Dr T felt that was unfair and that they had been the best even when there was only one clinic. Who know? But the attack on the figures kicked at the last prop and that prop fell out when it became apparent that the second clinic is unlicensed and that nevertheless, and in breach of the criminal law, he has continued to perform IVFs at that clinic. His argument was that he had many desperate patients that he could not in good conscience, turn them away. I am desperate but not so desperate that I need to pay a criminal a fortune.