Peter and Ursula Slennett said yesterday that legal action against Guy's Hospital and St Thomas's Hospital Trust (formerly Guy's NHS Trust) was now the only way to gain a proper review of their daughter, Hayley's case. They are seeking a full refund.
They were told that an NHS operation was months away, instead of which a date a few weeks away had been 'pencilled in'. Even when the Slennetts had raised the money for private surgery, no one told them that Hayley could probably have had an NHS operation within weeks.
In addition, despite paying thousands of pounds, Hayley was treated on a busy NHS ward; there was no cot for her; and nurses could not even find her a pillow.
Mr Slennett learned of the inquiry's findings last week in a letter from Tim Matthews, the chief executive of the trust. The Slennetts have been told that they are not entitled to a full copy of the inquiry's findings, only 'edited highlights', according to Mr Slennett. But he says that notes he took during a meeting in March with the two consultants who carried out the inquiry show that words have been 'twisted' and 'changed'. The Slennetts, of Bromley, Kent, have the support of the local community health council. Rory O'Kelly, secretary of Lewisham CHC, who was present at the March meeting, said it was the worst case of its kind he had seen: 'They (Guy's) have bent over backwards to play down the strength of the Slennetts' case. The inquiry evades . . . the most important question; why were the Slennetts forced to seek private treatment for their daughter? '
A spokeswoman for the trust said she was unable to comment because she did not have access to the full report over the weekend.
Hayley, whose case was highlighted by the Independent on Sunday last year, was born with a heart defect and misplaced artery which was compressing her gullet. By May last year she was frequently breathless and vomiting bile. Michael Tynan, professor of paediatric cardiology at Guy's, told her parents that he would try to get her an operation by December, but he could not promise a firm date. At one stage Professor Tynan is alleged to have said that Hayley's symptoms were due to 'acting up' and anxiety.
The Slennetts felt they could not wait. Peter Slennett, a window cleaner earning about pounds 250 a week, raised enough money through loans and savings for the operation to be done in Guy's private wing at the end of May last year.
According to the letter Mr Slennett received, the inquiry found that it was not Professor Tynan's policy to give dates for surgery. His reference to Hayley 'playing on her symptoms' was only to indicate that stress rather than her heart condition was to blame. The inquiry concluded that Hayley's clinical management had been appropriate, although there had been a failure in communication.
Since the operation Hayley has made dramatic improvement, gaining more than a stone in weight.
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