In an repurposed building in a corner of the grounds at the Royal Victoria Infirmary sit the offices of one of the hospital's newest services - and one which looks after young patients who, in all likelihood, may never get better.
But the team at the CHIPS - children's palliative care - service are focussed on doing whatever they can to improve the quality of life of children going through heartbreaking illnesses and conditions. The regional NHS service supports youngsters from birth to 18 if they're going through a chronic, terminal or life-limiting condition.
Whether that is a youngster with heart failure, a patient who may have suffered complications from drowning, or someone with a complex condition that has no cure, the team led by Dr Helen Aspey focus on managing symptoms and helping youngsters to concentrate on living, not dying.
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This might involve medication and planning for the worst - but it can also include working our what will be needed for a sick child to be able to go to the Theatre or head on an excursion to the Northumberland coast as part of a family holiday. As it stands, the service, which formally launched in January 2021, is not 24/7, but Helen and her team hope to persuade those holding the NHS pursestrings to support its expansion.
To shine a light on a lesser-known NHS service during the NHS's 75th birthday, Helen and clinical nurse specialist Allison Shiell told ChronicleLive what it was like to work with the most poorly patients.
Helen said: "Before January 2020, there was no dedicated paediatric palliative care service outside of paediatric cancer. That was the case across the whole of the North East and North Cumbria and this gap in provision was raised as an issue. And the CHIPS team was set up in response to this."
CHIPS is a "very small service" - with three specialist nurses, Helen leading the department, and three doctors working part-time. Dr Aspey explained: "We provide palliative care to children from foetal medicine right the way through to them being 18.
"It could be for anything from children with severe coronary heart disease to organ failure to children who may have complex and chronic life-limiting conditions. We work very closely with colleagues in areas such as intensive care.
"Paediatric palliative care is very different to adult palliative care. t's about providing palliative care support at any time during their illness or disease and trying to improve quality of life for the child and their family as much as we can, while recognising we can't fix the disease or process but we can try to reduce the impact it has.
"We could be involved from the very beginning of someone's care - helping to write home care plans - and then we can very often not be needed, and can take a back seat until such a time where the child and family need more support. "
Both woman added that, while it "can be very difficult" the service does incorporate helping families to plan for their child's end-of-life care. Specialist nurse Allison added: "People think palliative care is about death and dying, but it's actually about living. About having a child who is well enough to go to see Heathers at the Theatre Royal or to go to Lightwater Valley. But it's also about giving the family the support and the structures they need."
And Helen continued: "It's about all of that other stuff, though yes sometimes we do have to talk about really difficult things - but it's not all about that. And even then, by talking about those tough things, we are able to help families to make difficult decisions. Like with many things, if you don't talk about things, you don't know what the options are."
The pair explained how their job involved co-ordinating with clinicians working around the region to ensure that families knew palliative care was an option - and that it was not something they were scared of approaching. The aim now, after more than two years in operation, is to expand.
Helen added: added: "We don't provide out of of hours service - we can't provide over night care support. That's a barrier and something we would like to see the commissioners look into. Often the feedback is that families may just about manage, but would like that person at the end of the phone at three o'clock in the morning.
"We deal with questions like how do you support the families of a child who is really sick but they don't want to go back to intensive care. How can you give them the care they need in that situation?"
Asked what happened to sick and dying children before the CHIPS service came into being, both women said it was simple. Allison added: "Before this unit was set up, there just wasn't a service. Any care like this was incredibly rare - and dependent on individual doctors and nurses. Patients didn't have the choice."
