NI Health: 24 children wait year for first cancer appointment

Twenty-four children in Northern Ireland with confirmed or suspected cancers had to wait over a year for a first appointment, a review has found.

The figure, for April, is in a review of waiting lists by the NI Commissioner for Children and Young People.

More than 17,000 children were waiting more than a year to see a hospital consultant for the first time.

The health minster later said that by September there were no "red flag" paediatric patients waiting that long.

The review examined official waiting list data for children's health services not published as part of the Department of Health's statistical bulletins.

The commissioner said the waiting times were "terrifying".

Koulla Yiasouma said that waiting for any health service treatment can and does have a "profound impact on a child's health outcomes, emotional and mental well-being".

She said it was "shocking not only for the child but their families too".

"Each and every single one of them is a child and each and every single one of them is a child whose life has almost been put on hold, and a family whose life has been put on hold, because they are not getting the most fundamental right of healthcare that they deserve," she said.

Dr Ray Nethercott, of the Royal College of Paediatrics and Child Health, said he was shocked by the cancer figures.

"It is outrageous and there are probably many other words that spring to the minds of parents who are worried and concerned and colleagues who are facing into this," he said.

"Some of the answer will be about embracing and delivering that reform, delivering innovation, delivering different ways of managing children as close to home as possible.

"To be able to do that, it's not all about the workforce, but it's actually about giving some due care and attention to child health services as a distinct entity.

"I can't say that there's any way to do it immediately - I've got lots of ideas as do many of my colleagues.

"But really children and children's voices and people that work with children have a very small voice in our health system."

'Immense strain'

The review, called More Than Just a Number, examined the number of children and young people on waiting lists, and the length of time they wait to access first or review appointments with consultants for treatment in hospitals and also for services based in the community.

It found that in April 2021, one in five children and young people in Northern Ireland were waiting for a first or review appointment with a consultant.

It also found 17,194 children and young people were waiting more than one year and 510 more than four years.

The conditions affected included scoliosis, speech and language therapy and autism.

One family's story

Mandy O'Connor has two daughters waiting for reviews.

Her eldest daughter had an operation in Turkey for scoliosis in 2018 that cost them £35,000 for the operation alone, otherwise she would have been waiting 18 months for surgery in Northern Ireland.

She has not been seen in Northern Ireland since that operation and the family is travelling to Turkey on Wednesday for a follow-up appointment.

Her second daughter doesn't know if she has scoliosis which means time is of the essence to find out so they can tackle it early.

"From when Tasha [her eldest daughter] was diagnosed she was in extreme pain for the 16 weeks while we were fundraising," Mrs O'Connor said.

"To think what she would have been like for 18 months on that waiting list and even for the referral it was 16 weeks.

"It was marked urgent at the time - Tasha wasn't seen for a referral. The referral went in on July 2018, she wasn't seen until November 2018."

She said her second daughter had to wait 12 months for a first referral.

"That was in August 2019. She wasn't seen until August 2020 and as yet she hasn't been seen since."

The review found 17,194 children and young people were waiting over one year to see a hospital consultant for the first time

As well as looking at hospital waits, it also raises other issues including the "complete absence" of regional monitoring or reporting of waiting times for child health services in the community.

The absence of such critical information according to the commissioner makes it impossible to get a clear understanding of the number of children who are waiting for these services.

It found that at least 26,818 children in Northern Ireland were waiting for a community-based health service but it is thought the figure is much higher.

The report makes 17 recommendations.

These include:

• A full review of the child health system and appointing a deputy chief medical officer dedicated to children's health

• Establishing a single point of entry system across all health trusts for all child services

• Establishing a transparent budgeting process that shows clear budgeting lines for public spending on children's health services which meets the five child rights principles for public budgeting

Health Minister Robin Swann said waiting lists were a top priority

Health Minister Robin Swann said he was grateful to the commissioner for the "detailed review".

"My department and the wider HSC (Health and Social Care) system will carefully consider the report and recommendations from the commissioner as part of our ongoing work to transform and rebuild services," he said.

"Waiting times were clearly unacceptable prior to Covid-19 and have been exacerbated by the devastating impact of the pandemic across all aspects of service provision including, unfortunately, across children's services.

"Addressing these waiting lists is a top priority for me... it will require systemic change and long-term investment."

Ms Yiasouma said she welcomed the health minister's commitment to improve waiting lists and to address the "underlying issues which drive them".

"Waiting times are one of the clearest indicators of a system under immense strain and unable to meet the needs of its population," she added.

"We must strive to get to a point where all children and young people can get access to the right care, at the right time and the right place and no child ls left waiting months or years in a queue to access services."

DUP leader Sir Jeffrey Donaldson said the waiting times figures for children with cancer were "utterly appalling".

"I think we should see somebody very senior in the Department of Health appointed as a deputy chief medical officer to oversee children's health in Northern Ireland," he said.

"I think we need to invest more in children's health.

"I think children should have a degree of priority when it comes to such services."