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Libby Pitman and her two-year-old sister Lottie |
Royal Free to investigate how child’s fatal illness was missed
Test failures saw three-year-old with cystic fibrosis mistakenly given all-clear
A SERIOUS incident investigation has been launched at the Royal Free Hospital after tests designed to confirm fatal illness in children wrongly gave a young girl the all-clear.
The Hampstead Trust has suspended all “sweat testing” for cystic fibrosis (CF) following the misdiagnosis of three-year-old Libby Pitman.
The incurable condition, an inherited disease affecting the lungs and digestion, was “ruled out” by official letter on two separate occasions following laboratory tests by scientists in the Pond Street hospital – blood tests were also found to be “normal”.
After seven months in the clear, Libby was referred back to Great Ormond Street Hospital in February by a paediatric consultant concerned that Libby continued to show tell-tale symptoms of the disease.
Subsequent tests at the leading children’s hospital came back positive and the parents are now coming to terms with a painful reality that Libby is unlikely to live past her thirties.
Her mother Katie Fletcher, who lives in Fairhazel Gardens, West Hampstead, appealed for parents of children who have had sweat tests at the Royal Free to contact the New Journal.
She said: “I believe there are more families that have been given the wrong results in this way. Libby has broken the chain and I want to hear other people’s stories. I think the more voices we have, the better chance we have of fighting for a change in procedure at the hospital.
“They call it the ‘definitive’ test for CF. But that hasn’t been the case here and if it could happen at the Royal Free it could happen elsewhere.
“We were so happy when the test came back negative. But she was still ill. She would spend three weeks of each month really ill and then one week would be fine. She was eating so much and going to the toilet around 25 times a day.
“She is so much better now. She has a lot of medication and physio that means she can basically live a normal life.”
She added: “It is really hard because all our dreams we had for her future have changed. It is now just about prolonging her life as long as possible.”
The Royal Free has declined to comment on specific details relating to the sweat test of Libby Pitman. A spokesman said: “The trust took immediate action to suspend sweat tests at the end of March, when it came to our attention that a child had been diagnosed with CF at Great Ormond Street Hospital, despite two earlier sweat tests being carried out at the Royal Free which provided negative results.
“A biochemist from Great Ormond Street Hospital is conducting an independent review into the quality and effectiveness of sweat tests. The scientist will review the current practices for collection and analysis of samples, and the quality control measures in place to ensure the accuracy of test results. As a precautionary measure, sweat tests have been suspended at the Royal Free until the investigation is completed. An internal investigation is being undertaken to look at the testing processes.”
In a letter to the family, a consultant paediatrician offered “sincere apologies for the delay in the diagnosis”.
Libby’s test results came back from the hospital one week after the trust implemented a new patient appointment computer system. The Cerner system plunged appointment bookings into chaos and ended up costing the hospital more than £10million. It is unlikely the computer system could have affected a patient’s diagnosis.
According to the Cystic Fibrosis Trust, one in 25 people carries the CF gene and one in every 2,500 babies will be born with the condition. Most carriers of the faulty gene only find out when they have a child with CF.
Ms Fletcher said: “It wasn’t until March that my partner and I discovered we were both carriers of the CF gene. There was a one in four chance of our child being born with CF. This has affected the whole family. I’ve had to ring round all my cousins and tell them.”
The sweat test was introduced in the 1950s after research showed CF victims had abnormally high levels of salt in their system. While some borderline cases slip through the net, Libby’s salt levels were far higher than the level associated with the condition and shouldn’t have been missed.
A spokesperson from the CF Trust said: “The test is widely regarded as the gold standard for confirming the diagnosis of cystic fibrosis and should always be performed by experienced laboratory personnel in centres who carry out a minimum of 50 sweat tests per annum. In this case, the test appears to have failed.
“We would reassure any parents the vast majority of these tests, when done correctly, provide an accurate diagnosis.” |
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