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Child heart surgery units

We just hope that the Safe and Sustainable review will look very closely at all the units providing heart surgery for children, they deserve the best care.

We find it very hard to understand why Safe and Sustainable chose Bristol over some of the other centres, when it was the only centre not to have a high-dependency unit.

The recent CQC report in Bristol highlighted failings in three essential standards of quality and safety covering staffing levels, training of staff and support, and the overall care and welfare of patients. They found high-dependency need patients being cared for on a general ward. Providers have a legal responsibility to make sure they are meeting all the essential standards. So why then was no-one monitoring and why did it take our children to die and us parents to raise the concerns to get any one to listen and inspect?

Bristol’s answer to not having high-dependency is outreach nurses. We knew this was not working as in our experience they were not always around, and therefore not giving the 1:2 nursing ratio high-dependency states. The CQC found only one outreach nurse on any one shift and covering the whole hospital. The outreach nurse in our son’s case could not recognise a deteriorating patient and after four days of us pleading for him to be returned to PICU as he was clearly suffering and deteriorating, it took a cardiac arrest on day five to get anyone to do anything for him. We had been totally misled that our son was safe in a high-dependency bed when he left intensive care just one day after his major open heart surgery. How safe this was, we could not get any answers out of Bristol into what happened and why, the CQC report certainly answered these questions for us.

The CQC report highlighted senior staff had been raising concerns for the last three years at least, but we have read articles of concerns being raised as far back as 2006. Why was no-one listening and where were the regulators? But more worryingly, what were the Safe and Sustainable doing to ensure the centres they were choosing were meeting the standards they required and also checking out the performance data for the hospitals. Bristol do not have any current data, the last recorded being 2010, we know death rate is on the increase in Bristol now after a report found out some information under a FOI.

We wrote to a member of the commissioning team for the south west and this person also sits on the NHS Bristol trust. We asked about the issues in Bristol following our concerns around our son’s death, her response was that “the review does not mean that every child and their family receive excellent service, it simply means that the ingredients are there for a high quality service”. We were totally appalled by these comments which were basically saying it was acceptable we had a poor service and our son had died. But this statement was made just a week before the CQC report came out which highlighted that Bristol did not even have the ingredients for a high quality service.

We are also concerned that Bristol has had to reduce surgery and cut beds on ward 32 as a result of a formal warning from the CQC. How is this making it safer for children? In the interests of public safety surgery should be suspended and the unit investigated to resolve the issues and ensure the safety of the children in view of how long concerns have been raised but ignored for.

We are also concerned that Bristol do not report and investigate all incidents. Our son had two major incidents on ward 32; one a drug related incident, the other a cardiac arrest. Neither were reported on or investigated and both were serious and would of highlighted the failings of the ward and perhaps prevented the next child's death just three weeks after our son’s.

We understood the Safe and Sustainable review to mean that all the centres chosen had been scrutinised and would be of such a high standard that all children would receive an excellent service and stand a better chance of safer heart surgery.

All we can hope for now is that the review will look very closely at all the units and do something to ensure a high quality safe service for children; it is after all what they and their families deserve.

Editor’s note: University Hospitals Bristol NHS FT’s response to the CQC report can be found here.

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