The parents of Warminster boy Sean Turner say they fear that the terms of reference for a review into children’s cardiac services at Bristol Children’s Hospital do not go far enough.
Sean died in 2012 aged four from a brain haemorrhage after previously suffering a cardiac arrest – six weeks after having corrective heart surgery at the hospital.
NHS medical director Sir Bruce Keogh ordered an independent review into the hospital, after meeting Yolanda and Steve Turner in February and other families whose children died after undergoing heart operations.
Sir Bruce asked Sir Ian Kennedy, who led the inquiry into the deaths of dozens of babies at Bristol Royal Infirmary in the 1990s, to conduct a probe led by the families.
However, the Turners say the terms of reference for the review were published on NHS England on Friday despite the families still having issues that had not been addressed.
Mrs Turner said: “Sir Bruce Keogh stated publically that the review would need to be independent of the NHS and it must be led by the families involved. He said it must be our review.
“We took this to mean that we could have discussions with Sir Bruce Keogh, Sir Ian Kennedy and Eleanor Grey QC regarding the scope and terms of reference for the review.
“Despite two meetings and several letters, our concerns and issues still have not been addressed. We feel disappointed now that the terms of reference have been made public without the families' issues being responded to.
“We are even more concerned that the terms of reference do not go far enough to adequately shine light on the issues that surround our children's deaths.”
The Turners and other families believe the terms of reference for the review do not go far enough into investigating why their children died and that the review should start further back than 2010.
The review also will not determine questions of liability in respect of individual cases, so the families are asking for discussions to take place with Secretary of State for Health Jeremy Hunt about setting up a public inquiry.
Mrs Turner added: “We asked Sir Bruce Keogh to have discussions with Jeremy Hunt for a public inquiry as we believe an independent inquiry is what is needed to adequately look at each individual case, address the poor culture and leadership and have the power to hold people to account.”