Health: `We just want to know the truth'

When Neil Askew died, his parents were distraught. So why couldn't they find out what happened?

Mistakes happen. In the National Health Service 300 errors, on average, occur every day. Hardly surprising, is it? Within a huge bureaucracy staffed by over-worked human beings, we expect the odd mishap. If the worst happens, and a relative dies, we naturally assume that everything will be done to investigate what went wrong, and events will be explained in detail. Assurances may even be made that it couldn't happen again.

"I wish," says Chris Treleaven, 39, a former fire-fighter, who lives with his wife Lesley, 45, in the North-east. Four-and-a-half years after the death of their daughter Lisa, the couple are still seeking answers.

They are dissatisfied with the way the NHS dealt with their grievances after four-year-old Lisa died. "We've been made out to be the villains of the piece. But our daughter's memory has been insulted, and this has ruined our lives."

Chris and Lesley were concerned about their daughter's rising temperature. "Four times in five days, we sought medical attention. She wasn't well," Chris says. Finally, the GP sent her to hospital as an out-patient, for a chest X-ray. She was immediately diagnosed with serious pneumonia. "She died 48 hours later. If they'd detected it early enough, they could have given her intravenous antibiotics. I can't say she would have lived, but she would have had a better chance."

As the Treleavens attempted to come to terms with their grief, they wanted answers. But their GP questioned their need to view their daughter's medical records. "We were interrogated about why we wanted access to her records. I replied, `because she's my daughter'; I didn't think I had to justify it more than that. The doctor then replied: `if you're going to complain or take legal action, we will have to inform the Medical Defence Union, their insurers and solicitors.' It was insensitive, inappropriate and defensive." Soon afterwards, they were given access to the records - but, according to a letter written by their grief counsellor, their treatment has "engendered such anger within the couple, that it seems likely that it will be many years before they begin to come to terms with the loss of their beloved daughter".

In May 1996, the Treleavens were struck off their doctor's practice. They have since been through the formal NHS complaints procedure, but feel that they have yet to receive a satisfactory account of their daughter's death, and do not want to pursue the matter through the courts. "This has destroyed us for four-and-a-half years," Chris Treleaven explains. "I've lost the most precious thing in my life. I want the truth. Compensation without the truth is worth nothing."

The Treleavens have joined forces with the Bereaved Parents Group (BPG) - a group of families all of whom have lost a child after alleged NHS incompetence. By putting pressure on MPs in the last two years, they have persuaded the House of Commons Select Committee to investigate the complaints procedures of the NHS. The results were published this week - and the BPG was thanked for its role in bringing the issues to light. The committee found that a "culture of blame" in the NHS causes doctors to close ranks when something goes wrong, and that the current complaints system is "a shambles". The Committee ruled that following the death of a patient, it should be a legal duty for doctors to provide relatives with information (rather than an ethical requirement, which is the current position). The BPG now hopes the committee's recommendations will lead to changes in the law. "There were two major issues we wanted to be dealt with," says Art McConnell, 55, a violinist from Oxfordshire, who is a founding member of BPG. His daughter Lexie died in 1992 after being given a large dose of steroids. "We want there to be a totally independent inquiry to be available to parents following the death of a child." At present, health trusts investigate themselves. "This is hardly independent," says McConnell. "They have a bank of lawyers warning them they could be facing litigation, so how can they be impartial? The second point is that doctors have no legal duty to tell the truth to the relatives of children who have died. It's outrageous."

Lexie McConnell, a talented pianist, was nine years old when she complained of a blurry patch in her left eye. An optician referred her to a GP, who sent her to see a specialist. Toxoplasmosis, a relatively common infection, was suspected and steroids were prescribed. Five weeks later, with her immune system fatally suppressed, she died from chickenpox and cold sores.

This summer, the McConnells received pounds 100,000 compensation - a record pay-out following the death of a child. "Even though the coroner recorded death by misadventure, we were not granted a fully independent inquiry. We have campaigned to ensure that this cannot happen to anyone else. But we feel betrayed, let down by the system."

The BPG is cautiously optimistic about the findings of the House of Commons Select Committee, which they see as a move in the right direction. But the NHS admits that there is a long way to go before the committee's recommendations reach the statute book.

"When dealing with the deaths of children, it's an understandably emotive subject," says a spokesman from the Department of Health. "But last year we dealt with 89,000 complaints. Not all of these are serious medical issues. It can be something as simple as someone being unhappy about how long they've been kept waiting in A&E. People have the right to complain and the system should be user friendly.

"If mistakes have been made they should show up. That's what the complaints procedure is there for. We will be reviewing the committee's recommendations, and will report back in eight weeks' time.

"We've done a lot of work in this area already. The committee has simply highlighted where things can be better."

But, says Chris Askew, 47, a building services engineer from East London and a BPG member, "the system isn't working, is it?" His son, Neil, died from meningitis on 30 December 1996. "He had a rash and a temperature," Mr Askew recalls, "but he was kept waiting for four hours in a waiting- room.

"They only saw to him when he collapsed. By then, it was too late. I know mistakes happen. When they happen, I can understand that a doctor might lie to protect himself. But when you put trust in a system you expect your case to be looked at fairly. This never happened with our Neil. He was a lovely boy, good at football and really fit.

"All we wanted was the truth, to understand what happened. We weren't even allowed to know the name of the nurse who decided his case wasn't urgent enough for him to be seen immediately by a doctor.

"We wanted reassurances that it could never happen again at that hospital. But I believe that is not the case. The truth, that's all we wanted. We didn't even get an apology."

For further information, visit the Bereaved Parents Group website at www.bereavedparentsgroup.org