Martha's Rule brings hope to families but only because of one heartbroken mum's determination to help others

The aim is to stop avoidable deaths by being more responsive to parents' concerns and observations of their child. Whilst this new development is late in coming it is greatly welcomed as an amplification in the care and protection of our children. The National Paediatric Early Warning System will provide a straightforward way to track the vital signs of babies, children and teenagers conditions deteriorating. The roll-out is informed by the implementation of Martha’s Rule in English hospitals, in which patients will be given the right to a second opinion if they believe their concerns are being dismissed by NHS staff. 

Martha Mills, aged just 13, died in 2021 of sepsis. The findings of the coroner highlighted that her death was avoidable if only doctors had identified the warning signs and transferred her to intensive care earlier. The tragic loss of Martha resulted in her mother Merope campaigning to ensure that no other child would lose their life under such tragic and avoidable circumstances. She wanted to ensure that families are heard. The emphasis of the successful campaign was to give more power to patients and families. The result has been that NHS England is implementing guidance from Martha’s Rule within the National Paediatric Early Warning System as it develops

The system will now help to create a common language’ when tracking any signs of deterioration and will act as a trigger for escalation when needed. Under the new standard for children, doctors and nurses will be required to track a child’s blood pressure, heart rate, oxygen levels and levels of consciousness, with different scores representing the level of concern over four age ranges from newborn to teens. Health minister Maria Caulfield says the system will “save lives”.

Ron Daniels, founder and joint chief executive of the UK Sepsis Trust, has welcomed the initiative but considers too that more needs to be done. “We welcome the news that children admitted to NHS hospitals are now going to benefit from a nationally standardised early warning score, just as we’ve had for adults for some years. However, just as in adults, the score alone will not prevent unrecognised deterioration," he said.

“Alongside this it’s imperative that not only do staff receive the right training in the use of the tool but also that they’re working in organisational cultures which empower them to act rapidly, escalate to seniors and – most importantly – listen to parents and carers. We see far too many avoidable deaths from children within our NHS each year. We hope that this announcement will provide one small part of the solution to stopping that.”

My extended family has experienced two of our children develop sepsis during serious illnesses. We know first hand about the importance of being heard in medical emergencies and luckily, we were afforded the opportunity to be heard in each case. Our young ones went on to recover and thrive. Valuing parental/carer knowledge of their children is essential. As Professor Sir Stephen Powis  NHS national medical director, said: “We know that nobody can spot the signs of a child getting sicker better than their parents, which is why we have ensured that the concerns of families and carers are right at the heart of this new system with immediate escalation in a child’s care if they raise concerns and plans to incorporate the right to a second opinion as the system develops further.”

Parents and carers should not be fearful of raising the alarm if they consider their child is deteriorating. They must have confidence that they will be heard and taken seriously. They need to know that they have every right to speak up in order to avoid children needlessly and tragically dying. 

Wendy Preston, head of nursing practice at the Royal College of Nursing agrees with this and has been pointing out that they too, as a nursing profession, have been calling out for years for a standardised warning system in the NHS to be put in place for children . She had highlighted that the system must be “implemented successfully” across the NHS and is calling  for “investment in the training and education of staff” to ensure “they can use the new warning system to act swiftly when a patient’s condition deteriorates”.

The parents of children who have died in extraordinarily tragic circumstances such as Martha are to be highly commended . Not only have they been contending with their own personal losses, but in their grief they have thought of the nation's children too. They have taken action to protect them and change things for the better, they have reached out and relentlessly campaigned for positive change. They deserve our highest thanks and commendation. Positive changes have come to fruition, demonstrating the power of parents.