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Family 'devastated' after daughter told she cannot stay on children's ward

Niall Blaneyand
Aileen Moynagh,Health reporter, BBC News NI
BBC Karen, Regan and Anthony Kelly sitting on a sofa. Karen has shoulder-length blonde hair, wearing a black t-shirt and silver necklace. Regan has brown hair tied back, wearing a blue bib and pink jumper. Anthony has short grey hair and long beard, wearing a black polo shirt. Behind them is sunflower wallpaper.BBC
Karen and Anthony Kelly have criticised the Northern Trust for not allowing their daughter Regan to be cared for on a children's ward

The parents of a teenager with a learning disability say she has been told she cannot be cared for on a children's ward during a major medical procedure, despite her assurances that she would be.

Regan Kelly's parents, Karen and Anthony, said they were given written confirmation that their daughter would be accommodated on the children's ward at Causeway Hospital, where she had spent periods of time over many years.

But when they arrived for her planned stoma surgery last month, they said they were told she would not be accommodated on the children's ward.

The Northern Health Trust has apologised to Regan and her family "for the distress, anxiety, and frustration caused by their experience".

Regan, 18, has a learning disability, epilepsy and autism. Her family has now questioned the criteria used to decide where patients like her should be cared for.

The Department of Health (DoH) said while the policy for child services in Northern Ireland was for those aged 0-18 years, cases should be judged on individual circumstances.

Regan's parents said being on the children's ward was important because she is susceptible to serious infections, which they believe are more prevalent in an adult ward.

"Regan's main concern is her urinary tract infections (UTIs) because they are debilitating, leave her drained, leave her extremely fatigued and cause double the seizures," Mrs Kelly said

"Her quality of life is very poor when she has a UTI and the fact that it takes so long to get them treated.

"She was put forward to go for a stoma, a bowel stoma, and we are hoping this will cure the UTIs, but nobody can guarantee that this will cure it.

"This is an option, but we're getting to the stage where we're having to get big, more powerful antibiotics for Regan."

Regan, Anthony and Karen Kelly sitting at a kitchen table playing with toys.
Regan, who has a learning disability, epilepsy and autism, was due to have stoma surgery at the Causeway Hospital last month

The family said they had been assured by several members of medical staff that there would be no issue with Regan being cared for on the children's ward.

Mr Kelly described being told otherwise when they arrived for surgery as "devastating".

Mrs Kelly described what happened as "distressing and heartbreaking".

"Parents don't matter in Northern Ireland. We're not the first parents to be in this situation and we won't be the last," she said.

"We shouldn't have to sit here in 2026 and go through this, and for your daughter to be put out the way she was.

"She doesn't deserve this. She deserves better - a lot better than the NHS has given her."

Karen, Regan and Anthony Kelly sitting on a sofa. Karen and Anthony are looking at Regan who is smiling at the camera.
Regan is susceptible to serious infections, which the Kellys believe are more prevalent in an adult ward

Surgery deferred

The Kellys were subsequently sent a rescheduled surgery date for this week.

However, the letter stated that Regan would be cared for on the adult surgical ward, rather than the children's ward.

That surgery has now been deferred again "to allow further discussion with the family as to how the situation can be resolved and a plan for surgery agreed", the trust said.

The family's overriding concern, they said, is preventing Regan from contracting further infections.

"I would like somebody to step up and give us the reassurance that, as parents, we need to know that Regan is going into a safe, clean environment, that she is going to be comfortable in her surroundings… all we have ever asked for was to get these UTIs under control and we have been fighting so hard for this," Mrs Kelly said.

"We've been doing this for so long, for so many years to try to get this all done before we hit this barrier… when someone is transitioning from children to adult (services), it is absolutely horrendous."

The Kellys said they were aware of people up to the age of 24 who had been accommodated on the children's ward while spending time at the Causeway Hospital.

What are the rules around children's wards?

The Northern Health Trust said there is no specific regional or trust policy that stipulates an age restriction for admission to a children's ward.

However, it said "established practice is that children are generally cared for within acute paediatric services up to their 16th birthday".

The trust said that, given the nature of Regan's surgery, a "surgical ward which is staffed by experienced surgical nurses" was considered the safest environment for her post-operative care.

It said staff had made efforts to implement alternative arrangements on the day of Regan's planned surgery, but these did not meet the family's needs.

"The Kelly family should have received clear, consistent, and timely information from the outset and we regret that this did not happen… we remain committed to providing Regan with safe, compassionate, person-centred care".

The DoH said it acknowledged that for the Kellys this will be an "extremely difficult time for the young person and their parents".

"While there is a general policy position that paediatric hospital services are for 0-18 years, clinicians take a person-centred approach when making decisions on care a patient will receive," the department said.