Grieving mums say new NHS safety rule is a start but 'does not go far enough'

Zoë Muldoon spoke to Julie and Melanie about Martha's Rule and the why they feel they were let down by medical professionals

Two mothers who both lost their sons after being turned away from hospitals have welcomed a new scheme that gives NHS patients the right to a second opinion, but warned it does not go far enough.

Mothers Julie Alfrey and Melanie Theophine have been campaigning since their sons died days after they were discharged from hospital.

Julie's son, Johnny Alfrey, died of multi-organ failure caused by acute cardiac failure on 24 June 2022 at the age of 22.

His mother Julie said: "He had this bigger picture of how he wanted this world to be; peaceful and kind. He wanted everyone to be happy and he made everyone happy."

Described by his parents as "a perfect son", Johnny was a passionate musician from Littleborough and student at the University of Salford. However, his life was cut short days after he was discharged from Fairfield Hospital in Bury.

Doctors had mistakenly concluded he was experiencing panic attacks and sent him home.

Johnny's mother says prejudices like his young age contributed to symptoms being missed and their concerns weren’t listened to.

She said: "They should've listened to us saying it wasn't anxiety. We know what anxiety looks like.

"They drew a lot of conclusions without looking at the worst case scenarios.

"They wouldn't let us look at the notes, which we asked for several times, and after the fact we found there were lots of mistakes written in the notes and none of our opinions were written in the notes."

An investigation carried out by the Northern Care Alliance NHS Foundation Trust, which runs Fairfield Hospital, determined a series of failures that contributed towards Johnny's death.

It's a similar story for Melanie, who's son, James Theophine from Heywood, died at the age of 20 from organ failure three days after he was discharged from hospital.

Melanie said: "He was really turning into a lovely young man, and I was looking forward to the man he was going to become.

"I just didn’t see how somebody could be so healthy one minute, and dead the next. I really didn’t understand it, and I thought something's gone wrong, this isn’t right. Something's been missed."

Both mothers have been campaigning since the death of their sons for patients to have the right to see their own medical notes and request a second opinion.

Melanie said: "I could have asked for a second opinion then, and spoke to the person with the notes they had so far, I don’t think he would have been discharged."

In April 2024, 100 NHS trusts across England will roll out Martha’s Rule. The scheme is named after Martha Mills, who died from sepsis after a wrong hospital diagnosis.

It will give families the legal right to get a second opinion if they feel they’re not being listened to, and will be carried out by an independent critical care team in the hospital.

Julie and Melanie welcome Martha’s Rule, but say it doesn’t go far enough.

Julie said: "It’s a start but it doesn’t have anything about seeing the notes and challenging the errors that are in there. The main thing is having the notes.

"I was being told that everything was fine, so if Martha’s Rule had been there I wouldn’t have known I’d needed to ask for a second opinion."

A spokesperson for NHS England said the NHS Constitution for England states that patients have the right of access to their own health records and to have any factual inaccuracies corrected, and that in the circumstance of young children, a person with parental responsibility will usually be entitled to access their medical records.

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