‘My son’s inquest was to help others, but coroners are toothless’

Families hoping inquests will prevent future deaths are pinning their hopes on change which will never come, bereaved parents have said.

Christian and Julia Rogers made the comment after an inquest into the death of their child made a number of recommendations, which have not been enacted – and the coroner is unable to enforce.

An independent report commissioned by the Department of Health (DoH) found the number of recommendations made by coroners was so great the sheer volume was a burden to an “already pressurised healthcare system”.

The report suggested a central monitoring system should be implemented.

Louis had been a healthy, energetic little boy. His development was good.

But when he was 13 months old, he had his first febrile seizure. At the time, his parents were told such seizures were very common and that it was nothing to worry about.

He had more seizures – and each time Mr and Mrs Rogers were told the same thing.

Then, in 2021, his mother put him to bed at their home in south-west London.

An hour later, she went to check on him. He had died, six weeks away from his second birthday, without crying out for help or making any sound at all.

Initially, his death was put down as Sudden Unexplained Death in Childhood (SUDC), a category of death when the exact cause is unknown.

Since then, his parents have had to fight to find out what happened.

“A lot of people can put their grief and bereavement towards something. If it’s a criminal offence, you can put the blame somewhere.

“Some families have a diagnosis – so they can almost pre-grieve before their loved one dies.

“But in this case, it was so sudden. The inquest almost became our raison d’etre, to tell Louis’ story and seeing if we can help other people.”

In order to get an inquest, Mr Rogers wrote to the local coroner to outline why he felt Louis’ death needed further explanation – and to establish if errors were made by the health bodies involved in his care.

Eventually an inquest was held last year at Surrey Coroners’ Court and the coroner, Dr Karen Henderson, ruled febrile seizures had contributed to his death.

She also made a Prevention of Future Deaths (PFD) report which included six recommendations to a number of health bodies.

“We left thinking ‘this is fantastic’,” said Mr Rogers.

“The report was really wide-reaching so we were really pleased with the outcome because we thought it would lead to change, and that it was going to help other families.”

Their optimism did not last long.

The health bodies had 56 days to respond to the coroner. Once the responses have been received, the coroner’s role has been fulfilled; there is no mechanism in place to ensure recommendations are implemented.

“The responses back – they’ve committed to nothing. They’ve committed to no change, they didn’t give us a timeline or expectation,” said Mr Rogers.

He said one respondent, the Royal College of General Practitioners (RCGP), used the wrong name of the deceased – which made the family feel like the response was a “copy and paste administrative job” and not been looked at properly.

“It’s just so insensitive.

“It felt like it was an annoyance to them”.

The RCGP has apologised and said it was clear that its process for responding to PFD reports “fell short in this instance”.

It added that all reports were looked by its honorary secretary, who is a qualified and experienced GP, and often in collaboration with another appropriate clinician, usually its medical director for clinical policy.

The couple said they felt the respondents replied because they were obliged to, but recommendations did not have to be implemented.

“We actually went back and asked the coroner if she was going to compel them to do so, and she admitted she’s toothless to do anything.

“Why make the recommendations when you know full well that you can’t make those bodies do anything about it?

“If the NHS or these bodies aren’t willing to make changes, at what point does non-action become a contributory factor to other children’s deaths?”

Mrs Rogers added: “It’s really disappointing.

“I actually feel it’s quite dangerous that they’re making recommendations that can help to prevent future deaths and there’s no sense of urgency or they don’t see it as an opportunity to help prevent further deaths.

“Coroners should have the power to go back to authorities and say it’s not good enough.”

Their experience matches the findings of a report by the Health Services Safety Investigations Body (HSSIB).

Last year, coroners issued 569 PFD reports, a 41% increase on the year before.

The “significant volume of recommendations” being made to the healthcare system meant providers “struggle to prioritise and implement recommendations, concentrating on those which are addressed directly to the provider, or where there are immediate patient safety risks”, the HSSIB said.

Some recommendations duplicated or contradicted others – and failure to implement actions “compounds harm to patients”.

It suggested introducing a monitoring system – such as a searchable database – to keep track of recommendations made and any action taken.

In response, the DoH said: “This report is a step in the right direction for improving patient safety and patient outcomes, a priority area for this government.

“We will never turn a blind eye to failure and will work to root out poor performance and improve patient safety.”

In response to the recommendations made in Louis’s case, the NHS said it had amended its website to include epilepsy on its webpage on febrile seizures and had linked out to the SUDC charity on its webpage on Sudden Infant Death Syndrome.

The RCGP said it considered the guidance it issues GPs on febrile seizures to be “appropriate and comprehensive” and that it is covered in its curriculum for all GP trainees.