Northern Ireland child cardiac guidelines not endorsed
The guidelines used to assess children's cardiac services in NI were not endorsed by local professional medical bodies, it has emerged.
The assessment has led to the future of cardiac services at the Royal Belfast Hospital for Sick Children being placed under threat.
A national review of children's cardiac services began in 2011.
However, NI Health Minister, Edwin Poots, announced a separate one for Northern Ireland last July.
The service, the only one available to families in Northern Ireland, was assessed against the "safe and sustainable guidelines" used to assess units in England and Wales.
While the local consultation paper states that those guidelines were endorsed by the relevant professional medical bodies in the UK, it has emerged those organisations believed that Northern Ireland was being treated as a separate case.
Last August, the review team concluded that while the service was safe, it was not sustainable.
As a result, the Health and Social Care Board carried out its own consultation on how best to cater for these children.
Sarah Quinlan, of the Children's Heartbeat Trust, told the BBC that the families involved were disappointed at this latest development.
"Last year, we wrote to the Royal College of Paediatrics and Child Health, Royal College of Surgeons and several other professional bodies," she said.
"All confirmed that the guidelines are not endorsed as best practice in Northern Ireland, and that support given for the guidelines was for England and Wales only."
If that's the case, the guidelines are seriously flawed.
In letters seen by the BBC, Dr Hilary Cass of the Royal College of Paediatrics and Child Health wrote: "As you rightly point out, these were originally drawn up for England and Wales only.
"Clearly their application in Northern Ireland would have to be considered in the light of practicalities related to geography and population, and recommendations of the Compton Report on remaining paediatric services, which will have implications for specialist service inter-dependency. "
The Society for Cardiothoracic Surgery said: "Our comments have always been based upon the fact that it is directed at implementation within England and Wales. I have not made any comments nor has our executive on its application to Northern Ireland or Scotland.
"I can assure you our endorsement as a society applies to England and Wales."
Two surgeons perform around 90 operations in Belfast a year - a number which the review team found "unsustainable".
However, a further 50 cases are sent elsewhere. Around 400 operations is the preferred figure.
As part of the consultation six options are being looked at.
The service most favoured by the families is to keep the surgery in Belfast as it is. The other options include sending children to England.
However, another option includes an all-Ireland service.
The BBC understands that the Health Minister, Edwin Poots, has instructed officials to work closely with counterparts in the Republic to find a solution.
Mr Poots previously said: "Certainly that fact that the Health Secretary Jeremy Hunt has moved away from the Kennedy recommendations probably makes it easier for me to arrive at the conclusions that perhaps the parents would be supporting."
A spokesperson for the Health and Social care board said that, at the minister's request, a working group was established to develop a framework for the commissioning of services for children here who require cardiac surgery or interventional cardiology procedures.
"The working group drew on standards developed through the Safe and Sustainable process, but amended the standards to reflect the specific needs of the Northern Ireland population," they said.
"When the framework has been agreed by the minister, it will then be applied to each of the options outlined in the post consultation document, with the aim of identifying a preferred way forward for the provision of services for children with heart disease in Northern Ireland.
"The minister is expected to make a decision regarding the future service provision for children with heart disease within coming months."
Meanwhile the Safe and Sustainable programme director, Jeremy Glyde, told the BBC that despite being invited to join the steering group as an observer, no-one from Northern Ireland took up the invitation.
"A representative from Northern Ireland was invited to join the Safe and Sustainable steering group as an observer," he said.
"The review of children's heart services carried out in Northern Ireland is separate to the Safe and Sustainable review of children's heart services in England.
"Commissioning in Northern Ireland is the responsibility of the Health and Social Care Board in Northern Ireland."