Mum who fears never knowing why her child died backs data disclosure law change

5 May 2025, 00:04

Jools Sweeney with his mum Ellen Roome
Jools Sweeney with his mum Ellen Roome (Ellen Roome/PA). Picture: PA

Jools Sweeney, aged 14, died in April 2022, and his mum Ellen has called on social media firms to share his user data with her.

Social media firms should be required to hand over children’s data to bereaved parents “now, before its too late”, a mother has urged.

Ellen Roome, 48, said she might never understand why her 14-year-old son Jools Sweeney took his own life three years ago.

She has called for a change in the law, which MPs could agree to on Wednesday, so that tech giants must hand over children’s data to parents if their child has died.

“If they’ve still got the chance to change it now, I want the Data (Use and Access) Bill changed so that this is in there and we don’t have to wait years for a new law to go through,” Ms Roome told the PA news agency.

Matt Sweeney and Ellen Roome with their son Jools
Matt Sweeney and Ellen Roome with their son Jools (Ellen Roome/PA)

“If we’ve got a chance to change it, we need to do it now, before it’s too late.”

Jools died in April 2022, and Ms Roome believes his death could have been linked to an online challenge gone wrong.

She said if social media companies gave bereaved parents access to their child’s data and a harmful trend had a role to play in their death, parents and coroners could “stop it happening to other children”.

Max Wilkinson, the MP for Cheltenham in Gloucestershire where Jools was from, has proposed an amendment to the Government’s Bill.

It would allow bereaved parents to request their child’s user data from up to 12 months before their date of death, including “all content, communications or metadata generated or associated with the deceased persons online”.

Ms Roome sold the financial services business she had for 18 years to campaign for “Jools’ Law” – a right for parents to access their deceased child’s data without a court order – and wider changes to social media, which she described as “not safe”.

She said digital checks should form part of the post-mortem and inquest process, similar to a toxicology report to look for drugs and alcohol.

Ms Roome said: “There’s so much sextortion, blackmail, bullying online that I just think that has to form part of an inquest these days – and automatically request it, not this ‘well, we might request it, if the police feel like it’.”

This is just about the law keeping up with the way that families live their lives, that young people live their lives, and that society operates

Max Wilkinson MP

She continued: “I know how (Jools) died. I walked in to find him.

“I don’t understand why, and all I have been trying to do right from the word ‘go’ is trying to understand why my son’s not alive.

“It then became a bigger picture and Jools’ Law would stop other parents from (being in) my position, but even if Jools’ Law goes through, Jools has had his inquest, so it wouldn’t benefit me at all.

“But it would help other parents, and so I’ve gone off down that route.

“I’m kind of coming to the conclusion that I’m never going to understand, because nobody seems to be able to get me this data.”

Ms Roome said that when she spoke to social media firms in her efforts to access her son’s data, she found they feared being fined or, in some cases, they did not respond.

She said Jools had “presented no mental health problems” and described her son as “very bright”, “quick witted” and “very polite”.

She added that he “didn’t really do much wrong – he got detentions for smuggling a football into class, that normal kid behaviour”.

Liberal Democrat culture spokesman Mr Wilkinson said his amendment “comes down to everybody doing the right thing – that means social media companies doing the right thing voluntarily where they are able to do so, and it means politicians and the Government doing the right thing as well”.

He said that “in days gone by, the questions that parents would be asking would be answered by searching bedrooms, looking in cupboards, reading schoolbooks and diaries”.

Mr Wilkinson continued: “But now, many of those answers do lie in, in some cases, social media accounts.

“And this is just about the law keeping up with the way that families live their lives, that young people live their lives, and that society operates.”

The Data (Use and Access) Bill is expected to clear the Commons on Wednesday and move closer to becoming law.

The Government has proposed in the draft legislation a new duty for the watchdog Ofcom to tell tech firms that they should not delete information about a child who has died, but they would not need to supply the data to parents upon request.

The wide-ranging Bill also includes provision for a ban on creating sexually explicit “deepfake” images of a person without their consent.

A spokesperson for the Department for Science, Innovation and Technology said: “No family should have to experience the devastating consequences of losing a child. From summer the Online Safety Act will introduce strong safeguards to protect children from harmful content online, including material encouraging dangerous stunts and challenges.

“In tragic cases where a child’s death is linked to social media, under the Online Safety Act coroners will have the power to demand relevant data from platforms. This material can then be shared with relevant persons where appropriate, such as parents.

“We are also strengthening these powers through new data laws to ensure information can be preserved after a child’s death to facilitate investigations.

“We are committed to helping bereaved families get the answers they need. We will continue to engage with platforms to ensure they are prepared for new laws and to identify any remaining barriers to retaining data in such tragic cases.”

– The Samaritans can be contacted anonymously on 116123 or email jo@samaritans.org

By Press Association

More Technology News

See more More Technology News

An elderly lady walks with a zimmer frame to her chair

AI foot scanner could keep people with heart failure out of hospital – study

A close up image of a The North Face fleece

North Face and Cartier customer data stolen in cyber attacks

Imagery of a Zilch payments card and a virtual card

Buy now pay later provider Zilch to launch first physical card

UK’s most EV-friendly city has been revealed by new research.

Cities with slowest EV charging times and least amount of chargers revealed

View of a VodafoneThree logo outside the firm's offices

Vodafone completes Three UK mega-merger to form ‘new force’ in mobile market

A hand holding a Monzo bank card and a mobile phone showing the Monzo app

Monzo annual profit surges as paying subscribers boost digital bank

Majestic British Airways Airbus A380 taking off from London Heathrow at sunset, amazing colors

UK airspace shake-up could slash journey times and cut flight delays for millions of passengers

File photo dated 30/05/25 of the saltmarsh at Abbotts Hall in Essex. Saltmarshes are 'significant' carbon stores, but are at risk from rising sea levels, new research reveals

UK's muddy saltmarshes vital to tackle climate change, report finds

Nigel Farage

Reform backs cryptocurrency tax cut as party receives first Bitcoin donations

Digital devices on office workplace table of young business woman

‘Young people and black workers at highest risk of workplace surveillance’

Debris from the Titan submersible, recovered from the ocean floor near the wreck of the Titanic, is unloaded from the ship Horizon Arctic at the Canadian Coast Guard pier in St. John's, Newfoundland, in June 2023

The shock household item discovered in 'sludge' of OceanGate sub wreckage

Google is facing a £25 billion legal claim in the UK, accusing the tech giant of abusing its dominant position in the online search advertising market

Google facing £25 billion legal claim over abuse of search advertising market

A hand holding a phone showing the Nvidia logo

Nvidia posts strong growth despite ongoing tariff challenges

Dinosaur fossils could hold the key to new cancer discoveries and influence future treatments for humans, scientists have said.

Dinosaur fossils with tumours could hold key to new cancer treatments for humans, scientists say

A SpaceX Starship spun out of control in a test flight

Elon Musk's SpaceX Starship spirals out of control before exploding in third consecutive mission failure

Some 13 mobile masts have been upgraded in four regions, with mobile networks now covering an area equivalent to thousands of football pitches

Rural Scots in four regions given ‘significant’ 4G coverage boost