The National Health Service will press ahead with its planned rationalisation of children’s heart surgery despite a High Court ruling that it had failed to consult fairly in a decision to shut a specialist unit in Leeds.
The proposed creation of fewer, larger centres aimed at improving the quality of care which has yet to be carried out 12 years after it as recommended in the Kennedy report into the Bristol Royal Infirmary scandal, is now facing a further period of disarray and uncertainty.
Campaigners conceded that the victory at the High Court would not in itself prevent the closure of the unit at Leeds General Infirmary but said the ruling by Mrs Justice Nicola Davies exposed a “flawed and unjust process”. It is up to the court to decide whether to quash the whole decision to close Leeds or order a new consultation process to be undertaken.
More than 600,000 people including senior medics have signed a petition and thousands marched through the centre of Leeds opposing the plan which could see families of sick children forced to make up to 300 mile round trips from parts of Yorkshire and North Lincolnshire to the new specialist centres in Liverpool and Newcastle.
Save Our Surgery (SOS), which accepts the rationale for the review of services, has argued that Leeds has an existing high quality centre carrying out almost 400 cardiac procedures a year. It serves a growing population where there is rising incidence of paediatric heart disease.
Spokeswoman Sharon Cheng said: “This action was taken by parents and clinicians who simply could not stand by and watch a clear injustice being done. We are extremely pleased and relieved that the High Court has found in our favour.
“This ruling supports our firm belief that patients’ needs should be at the forefront in determining where heart surgery services are located. It also supports our assertion that children’s heart surgery service provision must reflect today’s realities, not those of ten years ago.”
Sir Neil McKay, chair of the Joint Committee of Primary Care Trusts (JCPCT) which is leading the reconfiguration of services for children with congenital heart disease in England, said patients had already waited too long for the changes to be brought about.
He said: “I am very disappointed with the court’s decision. The pressing need to reform children’s heart services is long overdue and experts have cautioned that further delay in achieving the necessary change would be a major setback in improving outcomes for children with heart disease.”
The matter is expected to return to court later this month. Mrs Justice Davies found that there were serious flaws in the process whereby Leeds was not included among the seven centres - Bristol, Birmingham, Liverpool, Newcastle, Southampton and two in London – which will remain open.
Under the changes four units will face eventual closure. It follows the 2001 publication of the report into the Bristol Royal Infirmary which concluded that up to 35 children died as a result of sub-standard care during heart surgery.
In order to make the decision each centre was given a score by an expert Safe and Sustainable panel which assessed the quality of the service on offer. However campaigners opposing the closure of Leeds were not allowed to see the sub-scores to understand how the final rankings were arrived at.
Counsel for SOS argued that the refusal to disclose the marking process meant they were unfairly hampered in their ability to argue for Leeds’ survival. It was also found that the JCPCT failed in its duty to properly scrutinise and assess all relevant evidence before making its decision. The NHS is expected to appeal against the decision in order to hasten the rationalisation process.
A similar campaign by the Royal Brompton hospital to save its children’s heart surgery was lost last year at the Court of Appeal.
Newcastle upon Tyne Hospitals NHS Foundation Trust said: “We remain confident that the original decision will in due course be upheld and the Freeman Hospital will be one of the designated centres providing specialist children's cardiac surgery, for which our performance and very high quality is recognised internationally.”
Case study: 'Amy knows the staff here – now she has to travel'
Allison Ball’s daughter Amy was born with the congenital condition truncus arteriosus which meant that she only had only one artery coming out of her heart.
“She was 10 weeks old when she was diagnosed. It was horrendous. It hadn’t been picked up during the checks. We were immediately referred to Leeds,” Allison recalls.
“We were admitted in August and we received a donor artery in September. I moved in with her at the hospital and stayed with her throughout. We received brilliant care from a very supportive staff.”
Amy, now 14, has undergone a subsequent operation and aces further surgery and ongoing check-ups until she is an adult. They will most likely be asked to make the journey to Liverpool in future.
But it is not just about the travel. “Now she is older she knows what’s going on – she knows the staff and feels comfortable in the environment.
“Amy knows the consultant and the nurses and that is really important,” she said.
“We have had a fantastic outcome at Leeds. As the parent of a child with a heart condition, I will take her wherever she needs to go to get the best treatment.
“We have had excellent care at Leeds and I can’t see any reason why it should close. It leaves the whole of Yorkshire without a heart unit.
“Today has been a big step in the right direction.
“I am not sure what will happen next but today has proved that the consultation process was a rubber-stamping exercise.”