Hospital 'misled' parents over son's operation
THE family of a boy who died following heart surgery in Bristol believe the hospital misled them about the operation.
Luke Jenkins' parents said they only agreed to their son having the planned procedure in the city after they claim they were assured a specific surgeon would operate.
But they believe that medical notes sent to them in response to their complaint about care at Bristol Children's Hospital following the operation show that a different surgeon carried out the procedure. Stephen Jenkins and Faye Valentine had wanted their seven-year-old son to have the operation in Birmingham Children's or Great Ormond Street Hospital after the youngster suffered paralysis following a procedure in Bristol in 2009.
They claim they only agreed to surgery at the city centre hospital after they were assured it would be carried out by a surgeon who had previously operated on their son.
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However the notes they received from the hospital appear to show that a different surgeon took charge of the operation.
Luke's parents do not dispute that the surgery went well but claim they were not told that Andrew Parry – the surgeon they were expecting to operate on their son – was only assisting fellow consultant Serban Stoica.
Mr Jenkins, 31, said: "After Luke was paralysed we said we would never go back to the hospital, but we had meetings with the local consultant in Cardiff and felt that because Mr Parry carried out previous operations we would go back.
"But no one told us Mr Stoica would be operating. We were never told of him, met him, spoke to him or anything and still they haven't mentioned him.
"It was Mr Parry who told us that surgery had gone OK.
"We think it beggars belief: if we had not requested the notes we wouldn't have known."
As previously reported in the Post, Luke died in April after suffering a cardiac arrest while recovering from the operation at the city centre hospital. An initial report compiled by the hospital suggested his death might have been prevented if he had not suffered his cardiac arrest on a bank holiday.
In a letter to the hospital trust, the family said: "We only returned to Bristol Children's Hospital due to the fact Mr Parry had carried out Luke's previous operations and believed in continuity of care as we held a lot of faith and trust in him.
"When we signed the consent forms we agreed to allow Dr Parry to carry out the surgery. We did not consent to Dr Stoica performing the surgery. We want answers regarding this, as you were aware we only opted for surgery at your hospital on the understanding that Dr Parry carried out the procedure."
In a copy of the operation note seen by the Post, Mr Stoica is referred to as the consultant and in another record he is named as the prescribing surgeon. Mr Parry is referred to as assistant in the surgical care plan and Mr Stoica as the surgeon. A typed operation note names Mr Stoica as the surgeon and Mr Parry as the responsible surgeon and assistant.
In letters from a consultant paediatric cardiologist at the Children's Heart Unit for Wales, Dr Orhan Uzun, has referred to Luke's parents' request for Mr Parry to perform the operation, stating "I will make sure that their wishes will be met".
The family also claim that the disc they were sent with Luke's medical notes was incomplete and also contained information about another patient.
Mr Jenkins said the password for the protected disc had also been sent in the same package, which he felt could have led to a breach of confidentiality if it had got into someone else's hands.
In a letter to the trust, Mr Jenkins said: "We feel that to add insult to injury we have discovered after looking through Luke's notes that you have also included another patient's information on four pages, detailing personal information such as address, telephone number, family member names, family telephone numbers, medical condition and treatment information, GP details, school information and more, this is totally unacceptable."
Mr Jenkins said he was also disappointed because the family believe that the latest information received from the trust contradicts some of the information in the initial report into Luke's death that they received.
"They told us they had done a thorough investigation and it was a detailed report but we believe they have contradicted themselves."
Mr Jenkins, who is studying health and social care at university, said: "We have met another family who lost their son in similar circumstances to Luke just a few weeks before."
Robert Woolley, chief executive of University Hospitals Bristol NHS Foundation Trust, which runs the children's hospital, said: "We have extended our deepest sympathy to the family for the loss of their child.
"We are in contact with them about the care that their son received, are investigating their concerns through the trust's complaints process and responding to all of their questions. We will continue to respond to them privately.
"In addition to our investigation into the family's concerns, a child death review will be conducted. This is standard practice, externally chaired and will include external review of all the relevant information. As part of the process the family will have an opportunity to raise issues with the panel.
"We have been notified of a data breach, which we take very seriously, and are investigating. We take steps to ensure that patient data is kept securely and confidentially and will take any necessary action that arises from our investigation to ensure that such breaches cannot happen."