Thousands of children may have needlessly died from sepsis because a national symptom checklist does not exist, nursing leaders warn

• The Royal College of Nursing has fought for a decade to bring in a checklist 
• But progress has been slow because of disagreements between NHS chiefs
• NHS data shows there were 26,725 cases of sepsis in children under 5 in 2015 

Thousands of children may have needlessly died from sepsis because a national symptom checklist does not exist, nurses and campaigners claim.

The Royal College of Nursing says it has fought for a decade to bring in a standard system to alert medics to children who are becoming gravely ill.

But disagreements between NHS chiefs in England means progress has been ‘very slow’, the 400,000-strong union claims.

And campaigners warn thousands of youngsters have died and more have been left with life-changing disabilities because of the delay. 

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. 

NHS data shows there were 26,725 cases of sepsis in children under five in 2015 in England

Get on with it, says campaigning mother  

Melissa Mead’s son William died of sepsis in 2014 when he was only 12 months old

By Ben Spencer, Medical Correspondent for the Daily Mail  

The grieving mother whose tragedy kick-started the Daily Mail’s End The Sepsis Scandal campaign said the postcode lottery must end.

Melissa Mead, whose son William died of sepsis in 2014 when he was only 12 months old, said there should be no more delays in introducing a national standard for spotting sepsis in children.

Mrs Mead, from Penryn, Cornwall, has campaigned tirelessly since her son died after his sepsis symptoms were missed by doctors and NHS helpline staff.

Speaking at the RCN congress, she said: ‘Thousands… 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?’ 

One in four survivors of sepsis are left with life-altering health problems, according to estimates. 

Sepsis occurs when the body reacts to an infection by attacking its own organs and tissues. 

Fiona Smith, professional lead for children and young people at the Royal College of Nursing (RCN), blamed a fragmented NHS for the delays.

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.  

Scotland introduced a checklist to spot sepsis in children in 2017, but no such scheme exists in England and Wales.

The children’s checklist would help medics spot when a youngster is deteriorating through checking temperature, heart rate and respiration rate.

It would also look at other signs of the killer condition, 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.

This means agreement is needed on the threshold for them becoming ill with sepsis, she told the RCN’s conference in Liverpool. 

MAN WHO HAD ALL FOUR LIMBS AMPUTATED BECAUSE OF SEPSIS CALLS FOR MANDATORY TRAINING 

A man who woke from a coma to discover both his arms and legs had been amputated and part of his face had been removed has called for mandatory training on sepsis.

Tom Ray was fit and healthy and living in Rutland in the East Midlands before he contracted sepsis at the age of 38 in 1999.

He spent three months in a coma during which time his wife Nic gave birth to their second child Fred, a brother for Grace.

Due to his illness, the family lost their business and had to sell their home.

Mr Ray’s sepsis – caused by a cut to his gum during a trip to the dentist, combined with a chest infection – came on rapidly and led to vomiting and a high temperature.

He fell into a coma and when he awoke he could not recognise his wife.

Mr Ray will tell the Royal College of Nursing (RCN) conference how there were delays to his diagnosis for sepsis.

On his website, he said: ‘Every doctor that saw me on admission to hospital missed what were the classic signs of sepsis.

‘They didn’t know what was wrong with me so I was simply put into a side ward, the curtains were closed around me and I was left to die.’

In his speech to the RCN, Mr Ray will call for more support and mandatory training for all members of the nursing and midwifery professions.

He said: ‘Damage and even death from sepsis will continue until there is a commitment to educate all staff to give every patient the care and attention that is needed to spot and treat sepsis as fast as possible.’

She also blamed ‘fragmented’ NHS bodies and competition between them, adding there was a ‘this is mine’ attitude and progress ‘has been very slow’.

Mrs Smith added: ‘Nurses have been calling for this for a very long time, for over a decade.’ 

Dame Donna Kinnair, who is the acting 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. 

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 per cent in 2015 to 91 per cent 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.’

WHAT IS SEPSIS?

Sepsis occurs when the body reacts to an infection by attacking its own organs and tissues.

Some 44,000 people die from sepsis every year in the UK. Worldwide, someone dies from the condition every 3.5 seconds. 

Sepsis has similar symptoms to flu, gastroenteritis and a chest infection.

These include:

• Slurred speech or confusion
• Extreme shivering or muscle pain
• Passing no urine in a day
• Severe breathlessness
• It feels like you are dying
• Skin mottled or discoloured

Symptoms in children are:

• Fast breathing
• Fits or convulsions
• Mottled, bluish or pale skin
• Rashes that do not fade when pressed
• Lethargy
• Feeling abnormally cold

Under fives may be vomiting repeatedly, not feeding or not urinating for 12 hours. 

Anyone can develop sepsis but it is most common in people who have recently had surgery, have a urinary catheter or have stayed in hospital for a long time.

Other at-risk people include those with weak immune systems, chemotherapy patients, pregnant women, the elderly and the very young.

Treatment varies depending on the site of the infection but involves antibiotics, IV fluids and oxygen, if necessary.

Source: UK Sepsis Trust and NHS Choices

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