'It feels like they've written him off': Parents fight to get son the palliative care he needs

New figures show only 30% of areas under NHS England are meeting the proper standards for 24/7 children's palliative care, ITV News Correspondent Rachel Younger reports

Born with a heart condition and a rare genetic disorder, Jaxson may only have months left to live.

While his parents hope their 17-month-old son will live for longer, they are trying to treasure every moment they still have together.

That time, however, is largely being taken up by fighting the NHS for basic supplies and for a community nurse to visit their home to oversee the toddler's needs.

“We were told in September that curative treatment would stop, and that he would be placed on a palliative journey," said Jaxson's father, Jim Cirkel.

"The truth is, we just don’t know how long we will have with Jaxson. It could be tomorrow, or he could live to 15. There is absolutely no way of knowing, and that is why every single minute is important to us.

"So, we spend every day giving him the best possible life that we can. Which is why, when we face red tape and bureaucracy trying to access support or equipment, it can be incredibly frustrating.

"I don’t want to spend time emailing and calling people, I just want to be with my son.”

Jaxson may only have months to live, or he may survive for years. Credit: Family handout

Jim, from south east London, has told ITV News how he's spent six weeks fighting "various departments within the NHS" to get syringes used to administer Jaxson's oral medication.

The former bodyguard said the syringes are no longer provided by the cardiology team the family visits every two weeks, and no one else has been able to provide them. He added that some of Jaxson's medicine is measured in 0.2ml, meaning he can't use a measuring cup.

Jim said his family was advised to re-use the syringes, sterilising them between uses, but said the numbers on them are "starting to fade".

He added that they "don't administer the medicine as smoothly once they are reused and that "this can exacerbate Jaxson’s reflux".

“Sometimes it does feel like the system is ignoring Jackson, or perhaps they’ve written him off, because he’s going to die, so what’s the point – that sort of attitude," Jim said.

"We’ve had a lot of fights just to get simple things organised for him."

After spending most of his first year in hospital, Jaxson was moved to palliative care at home, after which his parents hoped for regular visits from a dedicated community nurse.

Five months on, they are still waiting.

Jaxson's family has shared their story as new figures from charity Together for Short Lives shows that only 30% of local areas in England are meeting the required standard for 24/7 end of life care for children at home.

It found that nearly a half (47%) of areas are partially meeting this standard, while one quarter (23%) are not meeting it at all.

The 24/7 end of life care at home standard is not met at all in Northern Ireland and only in a minority of areas in Scotland and Wales.

The charity said workforce shortages, inconsistencies in the way support is planned and funded by local NHS and council bodies, and an estimated £295m children’s palliative care funding gap in England, are to blame.

For safe staffing levels to be met, 4,960 children's community nurses would be working in England, compared to the 902 currently employed by the NHS, Together for Short Lives warns. In Wales, an additional 208 are needed.

As it launches its "Short Lives Can’t Wait" campaign, Together for Short Lives is calling for the UK’s governments, NHS bodies and local authorities to take immediate action for the UK’s 99,000 seriously ill children and their families.

As a former bodyguard, Jim said he has been shot at, stabbed, and bottled - but nothing could prepare him for the pain of battling for his son's life.

"As a parent you want to protect your child, sometimes I feel helpless and like I’ve put him in a situation I can’t get him out of," he said.

“It’s the hardest job I have ever had in my life. The intensity of caring, it’s 24/7 – we always have to watch him. If his stent blocks, it’s too late. In the day, he is never left alone. I always have an eye on him.

“There hasn’t been any sort of emotional support from any public service. And sometimes your frustrations and desire to get things done are mistaken for anger, but I don’t want to have to be frustrated, I just want to be spending time with my son.”

With little time to spare, Jim has written an open letter to Prime Minister Rishi Sunak calling for an overhaul of the child palliative care system, insisting that the level of care families receive “should depend on their needs and not on their postcode".

Andy Fletcher, Together for Short Lives chief executive said: "It is unacceptable that families of seriously ill children are not getting the palliative and end of life care they need because of where they live. This is care that is clearly set out in standards, guidance and even the law.

“Time is short for seriously ill children and their families. They cannot wait months for the next election, the next spending review, the next set of planning guidance.

"Neither should they have to rely on the generosity of the public to access the care they need, much of which is provided by the voluntary sector.

"We would not accept maternity services relying on donations when a child’s life begins, so why do we accept this for palliative care when a child’s life ends?"

A spokesperson for the Department for Health & Social Care provided the following statement:

“Our deepest sympathies are with the families of seriously ill children and we want everyone to have access to the high-quality, personalised palliative care that can make all the difference at such a challenging time.

"That’s why we require all local NHS integrated care boards to commission end of life care services to meet their patients’ needs.

“We have made over £350 million available to hospices since 2020 to secure and increase additional NHS capacity and enable hospital discharge, ensuring hospices can continue to deliver care to those who need it.

“NHS England has also confirmed that, in 2024/25, it will once again be providing £25m of funding to children’s hospices in England.”

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know...