NHS trust apologises for care failings over children with serious heart defects [feedly]

NHS trust apologises for care failings over children with serious heart defects
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Damning report into paediatric cardiology at Leeds general infirmary prompts apology from NHS England

The families of 16 children born with serious heart defects did not receive the compassion, empathy and support they needed from staff at Leeds teaching hospitals trust and in some cases felt pressured to have terminations, an NHS investigation has found.

Leeds, where children's heart surgery was temporarily suspended last year over fears that death rates were too high, was given a clean bill of health for its clinical performance.

But the damning report into paediatric cardiology at Leeds general infirmary outlining the experiences of 16 families who complained of poor care at the unit has prompted apologies from both NHS England and the Leeds teaching hospitals NHS trust, which runs the hospital.

Parents felt they were being pressured to have terminations when the heart defect was detected in pregnancy, and were left alone and in distress after the diagnosis.

After the births, some say they were not told that doctors believed the baby would die. One couple waited three years for an operation only to discover that their child was not on the waiting list. Of the children involved, six are known to have died.

The review of the families' complaints about Leeds was carried out by the independent case reviewer, Professor Pat Cantrill. The complaints related to care between 2009 and 2013.

The mother of a baby called Tom told Cantrill: "They did the scan and then I went into a room where there was a doctor and a nurse. I was told my baby had half a heart.

"There was no compassion. I cried. The doctor said that the recommendation was to have a termination. I asked if there were other options and I was told I could go to full term and have the baby and then it would die or have the baby and then have surgery but that was not recommended. I was given a booklet and two days to make a decision.

"I was told not to look things up on the internet. I was sent to the antenatal clinic and waited from 2 o'clock until 5 o'clock. I was exhausted. My father went and asked for someone to see me. The staff had not been told about me.

"Then a doctor rang me at home on the Friday for my decision. I said I did not want a termination. I was told it was the biggest mistake of my life."

The families were sometimes given leaflets to take home but felt they did not have enough information to make a decision. "Some were left waiting in a distressed state, or in rooms on their own, and in one case left in a corridor," the report said.

The mother of another baby, Aziz, was urged to think about termination. "They seemed against me continuing with the pregnancy. As a Muslim I believe that abortion is wrong. They did not seem to understand," she told Cantrill.

After the birth, some said there was no plan for the care of the child.

John, who was breathless, sweaty, blue and slept most of the time, "was on the 'wait-and-see/as-and-when-required' path. Alarm bells starting ringing when a consultant at our local hospital questioned why no care plan was in place when John was so poorly," said on of his parents.

Many were distressed by the lack of distraction when necessary tests were carried out. The mother of Sally said: "When they took blood it was awful. They would hold her down. They had 12 attempts to get blood by four different doctors. She was so distressed and so were we.