Mum fears her son could die waiting for life changing surgery

The mother of a four-year-old boy with complex needs said she fears he could die waiting for life-changing surgery.

Collette Mullan made the claim to BBC Spotlight as it examined the scale of hospital waiting lists.

Northern Ireland has the worst waiting times in the UK, with more than half a million cases queued for an outpatient or inpatient appointment.

The Department of Health has described current waiting lists as "entirely unacceptable".

Óisín, from County Londonderry, has a number of health conditions including cerebral palsy, and is currently waiting for two procedures.

He is fed with a tube that carries his food through his nose into his stomach, but since it was inserted six months ago, his mum Collette said he has struggled to breathe.

"His breathing has been horrendous, choking all the time."

"He would choke until he vomits. It's very scary" she said.

Óisín is now waiting to have the nasogastric tube removed and replaced by a different feeding system which goes directly to his stomach.

Collette said she was told it could be a three-year wait for the procedure.

She is concerned that Óisín's cerebral palsy puts him at a greater risk of complications, saying she had been warned there was a danger he could aspirate.

"He could die. Anything going into his lung really, it could be very dangerous," she said.

The Belfast Health and Social Care Trust, where the specialist surgery is to be carried out, told Spotlight the wait should be no more than two years.

It apologised for the time Óisín has had to wait, adding that there was a limited number of paediatric surgeons who fit the tubes.

It said 75 children were currently waiting for the surgery.

"It is extremely difficult to prioritise these children based on clinical need due to the complex nature of their care plans" the trust said.

Collette told Spotlight Óisín is also waiting for surgery on his hip.

"His right hip is completely out of socket; it is just completely out," she said.

"Because this is out, then we have to match the two up together. It's not going to make him walk but it's to prevent pain.

"Pain will eventually come at some stage. Thank goodness it hasn't come yet."

Óisín was placed on the list for this procedure last year but Collette said she had no idea when it was likely to be carried out.

The Belfast Trust said demand for such surgery was outstripping capacity, and that it was exploring options to alleviate waiting lists across paediatric orthopaedic services.

BBC Spotlight also spoke to Taylor Clark, a 30-year-old former coffee-shop manager who has had to give up work due to poor mobility and severe pain.

The Bangor woman has Ehlers Danlos syndrome, which affects the tissues supporting her joints and muscles.

"The ligaments and tendons and muscle are all affected by that because they're not being held like a structure - they're sort of swimming around," she told the programme.

"I'm just in pain constantly - everything hurts."

Taylor said she was referred for an outpatient rheumatology appointment two years ago.

When she phoned in January this year to check her progress on the waiting list, she said she was told it could be approximately another six years.

The South Eastern Trust said it could not comment on individual cases.

In a statement the trust said it was "very conscious that patients have to wait for a significant time to receive a first outpatient rheumatology appointment" and that it understood the "distress" this could cause for patients.

As part of the programme, Spotlight brought together a panel of health experts to come up with ways to try and tackle Northern Ireland's waiting list crisis.

They included the former director of public health, Professor Gabriel Scally, health economist Professor Dame Carol Propper and former chief executive of the Northern Ireland Health and Social Care Board John Compton.

The panel agreed that more accountability within the health service was needed, along with the introduction of a performance management regime.

It also recommended greater involvement with the public and strong political leadership, which the experts said were all required to try to fix the current waiting list crisis.

The Department of Health told Spotlight that Northern Ireland's hospital waiting times were "entirely unacceptable" and had been "made significantly worse by the pandemic".

"Far too many people in our community [are] waiting far too long for assessment and treatment" the department said.

It said a key component in tackling waiting times was a greater separation of elective care from urgent and emergency care.

"This ringfences staffing, bed capacity and theatre capacity for elective treatments, helping to increase the number of patients treated and reducing cancellations due to emergency cases," the department said in a statement.

It added: "Reconfiguration of our hospital services is under way with the establishment of day procedure centres and elective overnight stay centres."