My daughter Jasmine Joan was diagnosed with an exceptionally rare and aggressive brain tumour at just 12 years old. She died aged 13.

Jasmine was brave throughout an appalling illness. In the final stage of her life, she experienced escalating pain, vomiting, neurological deterioration and severe seizures.

As her mum, I witnessed periods of distress at the end of her life that have never left me.

I cannot change what happened to Jasmine. But I can try to make sure that the children who come after her, and their families, have stronger protection.

That is why I am campaigning for Jasmine’s Law.

WHAT NEEDS TO CHANGE

England already has detailed guidance for the end-of-life care of babies, children and young people.

It covers pain and symptom management, seizures, advance care planning, specialist paediatric palliative care and support for children being cared for at home.

The problem is not simply a lack of guidance.

I believe that some of the most important safeguards need clearer, enforceable expectations so that a dying child's access to appropriate planning, specialist escalation and urgent support does not depend on where they are being cared for or which services happen to be available at that moment.

JASMINE’S LAW WOULD SEEK:

• A clear individual end-of-life symptom-management plan for every terminally ill child, anticipating foreseeable problems including severe pain, seizures, agitation and respiratory distress.

• Urgent specialist paediatric palliative-care escalation when severe symptoms remain uncontrolled.

• Appropriate 24-hour access to qualified clinical advice, anticipatory medication, rescue medication and urgent support where clinically required.

• Clear information for parents and carers about what symptoms may occur, what medication is available and exactly who to contact when urgent help is needed.

• Proper involvement of parents and carers while keeping the child's own wishes, dignity and best interests at the centre of decisions.

• A defined route to rapid senior clinical review when parents believe their child's severe symptoms remain uncontrolled or the agreed plan is not working.

• Proper safety review and accountability when a dying child experiences persistent or recurrent uncontrolled severe symptoms, so that lessons are identified and acted upon.

WHAT THIS CAMPAIGN IS — AND ISN’T

This is not about claiming that medicine can guarantee that every dying child will experience no pain or no seizures.

Sadly, some symptoms can be extremely difficult to control even with excellent care.

It is about making sure that no terminally ill child is left experiencing avoidable, uncontrolled suffering because adequate planning, medication, specialist expertise or escalation was unavailable.

WHY JASMINE?

I am currently going through Jasmine’s medical records in detail and have discovered that the records originally supplied to me do not contain her complete final admission and last days.

I have requested the complete records from Sheffield Children’s Hospital, Martin House Children’s Hospice, Scunthorpe General Hospital and the ambulance service.

I am also gathering independent witness evidence so that anything I say publicly about Jasmine’s final days can be supported as accurately as possible.

This campaign is therefore not about attacking individual doctors or nurses.

It is about asking a much bigger question:

If strong paediatric end-of-life guidance already exists, how do we make sure that every dying child actually receives the planning, specialist support, symptom control and urgent escalation that guidance envisages?

Jasmine cannot benefit from the answer.

But another child can.

THE ASK

I am asking the Department of Health and Social Care, NHS England and Parliament to work with paediatric palliative-care professionals, hospices, families and bereaved parents to create stronger and enforceable safeguards for terminally ill children.

Please sign Jasmine’s Law and help me make Jasmine’s experience mean that the children who come after her are better protected.

No terminally ill child should be left experiencing uncontrolled, avoidable suffering because adequate planning, medication, specialist expertise or escalation was unavailable.

For Jasmine — and for every child who comes after her.