Families' fears ahead of publication of review into Bristol care
The parents of young children who died on a controversial cardiac ward have spoken of their fears that an independent inquiry into their sons' care will not give them the answers they crave.
Faye Valentine and Yolanda Turner have many questions about the treatment their sons - who died within weeks of each other in 2012 - received at Bristol Children's Hospital and want the truth.
The Bristol Review was launched two years ago after the University Hospitals Bristol NHS Foundation Trust was accused of a catalogue of neglect and mistreatment of babies and children with heart problems. It will be published on Thursday.
Around 10 families are believed to be taking legal action against the trust, including seven whose children died following treatment on Ward 32.
Miss Valentine's seven-year-old son Luke Jenkins died in April 2012 and she told the Press Association that she was nervous about what the Bristol Review will say.
"We are hoping to get some answers because so far we haven't and we have been fighting this long for the truth to come out about what actually happened," Miss Valentine, from St Mellons, Cardiff said.
"We are trying to remain positive but we are nervous as well because we just don't know what is going to be in the Review."
Mrs Turner's four-year-old son Sean died in March 2012 from a brain haemorrhage after previously suffering a cardiac arrest while on the ward following complex heart surgery.
"We are hoping the Review will answer our questions, clarify the failings for Sean, give a public acknowledgement and bring us the truth," Mrs Turner, from Warminster, Wiltshire said.
"We are hoping the Review has been really rigorous and it will highlight the failings. It is important for us that there is a public acknowledgement of the failings in the unit and what was going wrong, particularly for Sean.
"We spoke out publicly and the hospital tried to play down what we were saying blaming Sean for being complex, claiming their unit was safe, when it really wasn't.
"It is really important for us that there is a recognition of the failures included in the Review."
The inquiry, which did not hold any public hearings, was commissioned by NHS England and chaired by Eleanor Grey QC.
The review examined care provided to children with congenital heart disease and the experiences of parents and carers from March 2010.
It looked at all the respective cardiac services delivered, both in Bristol, and through clinics closer to families' homes.
Professor Sir Ian Kennedy, who specialises in the law and ethics of healthcare, acted as consultant adviser.
Mrs Turner, 47, with her husband Steve, 49, and Ms Valentine, 30, and her partner Stephen Jenkins, 33, jointly complained to the independent healthcare watchdog, the Care Quality Commission about Ward 32.
The CQC carried out an unannounced inspection and issued a formal warning to the hospital about standards.
A five-bed high dependency unit has now been set up on Ward 32 and the trust commissioned its own independent review of paediatric nursing across the hospital with its findings implemented.
Previously, some had spoken out about the "inept care" of the young patients and called for a public inquiry into what they considered to be "chronically low standards".
Sir Ian was chairman of a far-reaching inquiry into children's heart surgery at the Bristol Royal Infirmary, which published its report in 2001.
The report made recommendations for a safer, more accountable health service.
Ms Grey is a former counsel to the Bristol Royal Infirmary inquiry.
The trust said: "We are expecting a number of independent reports and findings about services in the Bristol Royal Hospital for Children in the coming weeks.
"These reports will raise issues about the care we provided to a number of children. They will be critical about the way we have responded in the past to concerns and complaints raised by some of the families of the children we have cared for.
"We know we have not always given the right level of support to every family. This has been heightened by the fact that in these particular cases the families have been facing and trying to cope with the sad death of their child.
"We are very sorry that we haven't met our own high standards of care for these families, and that has added to their distress at an incredibly difficult time for them.
"We care deeply about providing the right care to every child and supporting and involving their families in the right way.
"We are determined to learn from the report's findings and recommendations."