Family's call for more information ahead of transplants

A couple whose daughter died weeks after a double lung transplant have added their voice to calls for more information about transplant donors.

Ian and Joyce Griffin's daughter Rachel, who had cystic fibrosis, underwent an operation at Wythenshawe Hospital on 13 April. She died on 21 May.

They say she was not given enough information about the lungs she received.

"Rachel wasn't given the fullest picture so she didn't get to make an informed decision," Mrs Griffin said.

"We think transplant patients should be informed about the medical history of the organs they are receiving.

"The outcome with Rachel could have been the same - but she should have had the choice."

The couple, from Hazel Grove in Stockport, also say they have not yet received a full explanation as to why their daughter died and are now waiting for an inquest.

The University Hospital of South Manchester (UHSM) NHS Trust, which runs Wythenshawe Hospital, said they could not comment on Miss Griffin's case ahead of the inquest.

But they said all patients undergo rigorous assessments before they are put on the transplant list.

A spokeswoman said: "Every patient is talked through a very stringent check list and we endeavour to give as much information as possible surrounding their treatment and potential risks.

"It is during this time that we discuss the circumstances under which we will and will not accept donor organs, if and when any become available.

"Our patients are made aware that once we have been notified that organs are available the surgical team will investigate them to check that they are deemed excellent and safe to use.

"We do not divulge personal information about the donor in accordance with national guidance on patient confidentiality."

Mr and Mrs Griffin contacted the BBC after hearing about Lynsey Scott who died months after a transplant at the same hospital.

Ms Scott was given the lungs of an individual who it subsequently transpired had smoked for 30 years, although there is no suggestion that contributed to her death.

Mrs Griffin said her daughter's condition deteriorated and she asked to be put on the transplant list in 2005. She was assessed and put on the list two years later.

Rachel received a call in the early hours of 13 April, telling her to go to Wythenshawe as soon as possible as lungs had become available.

"They came to see her and said they were from down south," Mr Griffin said.

The family say that was all they were told about the lungs, aside from that a gas test was "pristine", before she was rushed into theatre to undergo the eight-hour transplant operation.

She survived the surgery and began to improve, her parents said.

But after about 10 days her condition deteriorated.

She was put into a ventilator and later on an ECMO machine which oxygenates the blood from outside the body and allows her new lungs to rest.

But, despite their efforts, Rachel died a few days later.

Her family hope that by speaking out, along with Ms Scott's family, will encourage the hospital to reconsider their processes.

"We know we can't bring Rachel back but we don't want other families to feel like this," Mr Griffin said.