Children lose clinic of hope

Shocked parents demand inquiry as hospital withdraws funds for pioneering doctor’s work

Mail on Sunday June 9, 1996

IT WAS a shocking, numbing moment for Jenny and Rex Yetton. Specialists had told them their two-year-old son Alex was autistic.  The couple should put him in a mental institution, they said. . . and forget about him.  But it was advice that Rex, a Brighton-based GP. and Jenny could not accept.

Jenny said: ‘His condition means he is often cocooned in a world of his own where he can’t be reached’ He is almost incapable of emotion and can be violent and destructive for no apparent reason. Nobody understands what parents with these problems go through.’

Spurred by their love, concern and fear, the Yettons began a desperate hunt for treatment.

And eventually they found hope in the pioneering Vitamin B12 Unit at Westminster and Chelsea Hospital in London where they were told that Alex, now 13, had a vitamin B12 deficiency, which drastically exacerbated his autistic symptoms.

But as Alex was receiving treatment — including injections of vital B12 co-enzymes — the unit closed without warning.

The closure appalled families who relied on the unit.

Jenny, 4O, said: ‘‘There is no else to turn. I believe we would have found a breakthrough for Alex and other autistic children. We are devastated.’

But the despair has prompted a fight for the unit’s survival by a group of eminent doctors led by Lord Walton, a professor of neurology and former resident of the BMA who sat on the House of Lords Ethics Committee.

The unit’s philosophy is that without vitamin B12 — which we get from foods such as liver, egg yolks, cheese and powdered whole milk — the body cannot function properly.

But some people, like Alex, cannot process vitamin B12, creating disorders in the nervous system leading to seizures and fits, blindness, kidney failure and autistic symptoms.

Alex was one of 300 children from all over Britain treated at the B12 Unit run by Dr Ray Bhatt — one of only five in the world specialising in this kind of disorder.

The Yettons were nearing the end of two years of tests when the unit suddenly closed after a row between Dr Bhatt and the hospital’s Trust.

The B13. Unit had been funded by the Children’s Medical Charity from 1978 until December l995 when —after losing revenue to the National lottery —the charity could no longer support it.

Dr Bhatt negotiated with the hospital’s chief executive, David Highton, to keep the unit open at a cost of 200,000 a year.

But Mr Highton and the Chelsea and Westminster Trust Board —which has authority over the hospital’s 230 million health provision — refused to provide funding and claimed Dr Bhatt’s test procedures were experimental and unethical.

 

Wicked

The suggestion is denied by Dr Bhatt, who ran the unit for 10 years d is recognised worldwide as a specialist in the condition.

He, thinks the closure has more to do with funding and medical politics than ethics.

He said yesterday his tests are ‘well established around the world’ and were cleared by Chelsea and Westminster Hospital’s own ethics committee on four occasions.

‘When 1 raised the question of funding, the Trust board started treating me as though I was some monster experimenting on children.

‘This is simply an excuse to close the unit because they do not want to fund it.

‘But it just doesn’t make financial sense. If a Vitamin B12 deficiency is detected earlier in a person’s life it would save the NHS millions.

‘They are accusing me of experimenting on children, which is just about the most wicked accusation you could level at a doctor.’

Lord Walton and the parents of children affected by the closure have called on Health Secretary Stephen Dorrell for an independent inquiry.

Lord Walton says the unit has done excellent work and should remain open.

Jenny Yetton says: ‘I am a nurse, my husband is a GP and I can assure you the tests are just the normal ones done for children with B12 deficiency.’

Parents were outraged not to be notified of the unit’s closure. They turned up for appointments to find it shut.

Angela O’Callaghan, of Hounslow, London, whose son Brody, five, was treated there, said:

‘He was so close ‘to finally getting the full treatment he needed —then they pulled the rug from under him.’

Frank Redmond, of Earls Court, London, whose daughter Tess, four, was treated at the unit, said: ‘I can’t forgive them for what they’ve done.’

In a written statement Dr John Collins, medical director of Chelsea and Westminster Hospital Trust, said: ‘Our concern is the safety and well-being of our young patients.’ He said the Trust had offered a short-term contract to Dr Bhatt to allow his treatments to be assessed. But Dr Bhatt is taking his case to an industrial tribunal.

The Health Department says it has no involvement in the matter — but Lord Walton believes an independent inquiry is needed.

Whether the worried parents — and the children who suffer — will get one remains to be seen.