Thousands of children have died needlessly from sepsis due to delays of more than a decade in introducing a nationally agreed checklist of symptoms, campaigners and nursing leaders have said.
Disagreements between NHS bosses in England means progress has been “very slow” to bring in a standardised system to alert doctors and nurses to children who are becoming gravely ill.
As a result, thousands have died and more have been left with life-changing disabilities while NHS bosses fail to find a solution, campaigners said.
NHS data shows there were 26,725 cases of sepsis in children under five in 2015 in England.
The UK Sepsis Trust says between 1,000 and 4,000 under-fives die every year in the UK from the condition.
One in four survivors of sepsis are left with life-altering health problems.
Fiona Smith, the professional lead for children and young people at the Royal College of Nursing (RCN), blamed a fragmented NHS for delays in introducing a checklist for children, while Dr Ron Daniels, chief executive of the UK Sepsis Trust, said: “This is a classic case of ‘perfection is the enemy of progress’.”
A symptoms checklist for adults already exists but NHS trusts tend to rely on their own systems for children.
The children’s checklist would help medics spot when a youngster is deteriorating through checking temperature, heart rate, respiration rate and other signs, such as urination, skin colour and rash.
Ms Smith said part of the problem is that children of different ages have different heart and respiratory rates, meaning agreement is needed on the threshold for them becoming ill with sepsis.
But she also blamed “fragmented” NHS bodies and competition between them, adding there was a “this is mine” attitude and progress “has been very slow”.
She continued: “Nurses have been calling for this for a very long time, for over a decade.”
Dame Donna Kinnair, chief executive of the RCN, said the checklist could save lives.
“Sepsis in a child is so sudden, you see a child go from life to death,” she said.
“You can see a child who comes in looking like they have a common cold. You might send that child home.
“In a matter of an hour you see the child develop the spots and the symptoms of sepsis that are very clearly defined.
“You might think it’s flu, you might think it’s a cold, but an hour later you have a child with no way of saving.
“By the time they have developed the stark symptoms of sepsis there’s no way you can come back from that.”
She said it was “truly devastating” for any health professional to see a child come back with sepsis after being sent home.
“It’s really important that we get a way of ensuring that we diagnose this accurately,” she said.
“Scotland has seen it as a priority. It’s a question of priorities.”
Dr Daniels said: “The reality is that there’s not going to be a solution that every clinical expert is happy with.
“But for the sake of our patients, it’s absolutely vital that we work collaboratively to develop a system for children that can be used across the whole NHS.
“In order to drive things forward, we are going to need a degree of assertiveness from NHS England and NHS Improvement just as we have seen for the system for adults.”
Campaigner Melissa Mead, from Cornwall, who lost her 12-month-old son William to sepsis in 2014 after doctors failed to spot it, said the current system means care varies according to where patients live.
#SepsisUP19 is an opportunity to collaborate, challenge, listen, evaluate and work together to create solutions to the ‘problem’ of there being multiple, sometimes conflicting, approaches to recognising and managing #sepsis https://t.co/f4UZ6ufABU pic.twitter.com/iSYb045i2K
— The UK Sepsis Trust (@UKSepsisTrust) May 21, 2019
She added: “Ever since William died, we have been stuck in a situation where lots of different groups and people cannot decide what the standard should be, what should be measured and what it should look like.
“Why can’t people at these organisations come together for the good of the public?
“Thousands of children have died or suffered disability while health organisations continue to drag their heels and can’t make a decision.
“More children will continue to die. Whose child will it be that pushes them over the edge? Will it be their child or grandchild?”
Symptoms of sepsis in children include rapid breathing, convulsions, vomiting, very pale or mottled skin and feeling cold to the touch.
Celia Ingham Clark, medical director for professional leadership and clinical effectiveness at NHS England and Improvement, said: “The NHS has made huge improvements in spotting and treating sepsis quickly, with screening rates in emergency departments rising from 78% in 2015 to 91% in 2018.
“The NHS is working with the Royal College of Paediatrics and Child Health to develop a national early-warning system for children which will help NHS staff to rapidly identify acutely unwell children and ensure they are looked after in the most appropriate place.”