Family 'in limbo' over future of Belfast heart surgery

Grace was diagnosed with a heart condition during her mother's 20-week scan

The family of a child awaiting heart surgery have said they have been left "in limbo" without a decision on the future of the service in Belfast.

The health minister had been expected to make an announcement in July. On Tuesday he told the assembly he hoped to make announcement this week.

There have been fears surgery will move to Dublin or, in the worst case scenario, England.

The issue first came to light in Easter 2012.

The minister, Edwin Poots, said he was looking into the provision of two centres, one in Belfast, the other in Dublin.

Judith McKee, whose two-year-old daughter, Grace, is waiting for surgery, said the matter had been badly handled.

Grace was diagnosed with a heart condition during her mother's 20-week scan.

She has had two major heart operations - one in Belfast, the other at Our Lady's Children's Hospital in Dublin.

She is expected to have further surgery within weeks, but at this stage, her mother does not know where that will be.

"Initially, I was not really concerned about the timescale," she said.

"I was thinking that we all want the right outcome. At least every avenue that can be explored is hopefully being explored.

"We all need the right outcome for families and children like these, but it has been going on so long now."

Mrs McKee told the BBC that waiting for an announcement, which will determine where her child will be operated upon, has been difficult.

While Dublin is closer, there is a possibility that without agreement being reached, a majority of families will have to travel to England.

Judith McKee said the issue had been "badly handled"

In documents, seen by the BBC, staff from both Belfast and Dublin hospitals have expressed their frustration about the lack of decision making.

It was known that cardiothoracic surgeon Prof Freddie Wood would be retiring from the Royal Victoria Hospital in Belfast by the end of this year.

At that stage, his colleagues were pressing the Department of Health to put suitable arrangements in place.

In a letter to Mr Poots, cardiologists said they were not "shroud waving" but highlighting potential crises.

In one letter written in July 2012 and signed by four of the team's paediatric cardiologists, the doctors warned that their primary concern was and always has been the care of patients and their families.

In a statement to the BBC, Mr Poots said: "I am engaged in exploring whether I can achieve an outcome where paediatric surgery can continue to be delivered in Belfast.

"This would involve a model which provides two surgical centres within the island of Ireland - one in Belfast and the other in Dublin.

"I understand that the delay in announcing the way forward for this service is undesirable and that it causes further consternation to families.

"However, this is a course of work that will have to be seen through to ensure that every opportunity has been explored fully. I therefore urge people to be patient a little longer.

"I hope to be in a position to give the assembly a full update in the not-too-distant future."

An indication of just how sensitive the situation is, is that negotiations between Belfast and Dublin have been going down to the wire.

It is also an indication of how determined Mr Poots is to keep paediatric surgery, or some form of it, on the Belfast site.

Communication between Belfast and Dublin is taking place almost on a daily basis.

The BBC understands that on Tuesday, consultants from both hospitals are to meet for crunch talks in Dublin. It is understood those talks are about how Dublin could staff Belfast in the short term, in order to keep the surgery continuing.

The health minister has made it clear that he is keen to employ the expertise of a doctor who runs a similar twin-centre model in Boston.

Bringing him on board could mean the time frame for the current review being extended by several months.

While families may be disappointed at that move, Mr Poots might argue that some extra time would be worthwhile, if it meant Belfast maintains paediatric surgery.

One of the concerns felt among local health staff is the extent to which Dublin is seen to be setting the agenda.

A document dated in July this year and from senior medical staff in Dublin says that they would support elective surgical work in Belfast until Our Lady's Children's Hospital in Dublin can take "all the elective work".

A decision is expected soon on the future of children's cardiac surgery in Northern Ireland

The email goes on to advise how Belfast should organise its surgical lists in order to facilitate the surgeons travelling from Dublin.

"We realise moving the operating day is not easy, however, for us to consistently support RVH (Royal Victoria Hospital) operating it has to be Tuesday."

While that was said in July, it is understood that a great deal of negotiations have taken place since then to ensure Belfast is a key player in whatever happens.

A 2012 email from the Belfast Health Trust highlighted its concern that little consideration was being given to the issue of transport between Belfast and Dublin.

"We find it difficult to accept undertaking an analysis of paediatric retrieval and transport systems as a separate process when the outcome is intrinsic to any decision taken."

Legacy

The outcome of children's paediatric services is critical on a number of levels.

Firstly, it is crucial that very sick children are given the best of care and in a location that is convenient to their families.

The outcome will also have a massive impact on Mr Poots's legacy as health minister.

Breaking the log-jam and saving paediatric surgery in Belfast would elevate the minister not only in the eyes of the public but also among his political rivals.

If the decision goes against him, children's heart services will join the list of other recent stories that Mr Poots would prefer to forget about.