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The exhausted mother of a child with a life-limiting condition who is denied specialist palliative care at home on weekday evenings and at weekends has told Sky News her situation is “unsustainable”.

Emily Marsden is a full-time carer for her eight-year-old daughter Daisy who was born with Rett Syndrome, a rare genetic condition, that requires round-the-clock specialist nursing care.

Doctors warned Daisy only had weeks to live.

That was two years ago.

Daisy and her mother
Image:
Daisy and her mother

But looking after Daisy at home means that Emily only receives specialist palliative support for her daughter Monday to Friday, between 9am to 5pm.

“I think having to think about the possibility of your child not making it through the night is possibly one of the worst things you’re going to have to face, and having to face that without the right support is pretty awful really. It sometimes feels unsustainable,” Emily said.

She has asked for extra help, but specialist palliative care is not available in her area out of hours.

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Jackie Appleton knows exactly how Emily feels. She lost her seven-year-old daughter Amber May in March last year.

Jackie says she only received 24/7 palliative care for her daughter during the last three months of her life.

Amber May was born with CACNA 1A. The rare genetic condition left her needing complex medical care but Jackie says she was made to feel “inadequate” and “greedy” every time she approached her local healthcare provider for help.

Amber May
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Amber May

She told Sky News she battled for years to access specialist nursing support and this took away quality family time she should have spent with her daughter during her final years.

“I’m a mum of three, I don’t have the luxury to look after one child, I have to make sure the whole family is looked after but I was also made to feel as if I was being greedy asking for more, and I was told if I have more care then it’s taken away from another family who may need it,” Jackie said.

Health workforce researchers warn more families will be left without specialist palliative care unless recruitment is stepped up and existing staff are given more training.

The latest figures show the number of district nurses who can provide palliative care in the community has dropped by two-thirds in the past twenty years. And around 30% of these current staff are not qualified to give end-of-life care.

Alison Leary, chair of healthcare and workforce modelling at London South Bank University said: “I think district nursing is quite undervalued.

“For the first time we’ve seen district nursing numbers drop to under 4,000 in the country and that’s a very serious situation if we’re going to provide care in the community.”

Emily wants to enjoy every precious moment she has left with Daisy. But that is almost impossible when she does not get the support every mother of a child with a life-limiting condition should receive.

Daisy
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Daisy

Andy Fletcher, chief executive of Together for Short Lives said: “These children can have very complex and unpredictable conditions and often need 24-hour care, seven days a week.

“However, care and support are not always available when families need it most, especially at night and at weekends. This can put huge pressure on already exhausted families.

“We are asking the government to urgently act and address the £300 million funding gap for children’s palliative care in England, invest in the workforce and futureproof the lifeline NHS England’s grant funding for children’s hospices to ensure support is in place to meet the children’s complex needs.

“For too long the needs of these children and their families have been overlooked in the planning and development of health and care policy, leading to critical inconsistency of access to support.

“This must change.

“Time is short for these families and access to the right, round-the-clock support is vital to help families make the most of every moment they have together.”

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The Godfather-style gang war gripping two major cities – with brutal attacks caught on camera

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The Godfather-style gang war gripping two major cities - with brutal attacks caught on camera

It’s like The Godfather, one reformed drug trafficker tells me.

The mythical gangster film centred on an organised crime dynasty locked in a transfer of power.

Communities in Scotland currently have a front row seat to a new war of violence, torture, and taunts as feuding drug lords and notorious families grapple for control of Glasgow and Edinburgh.

There have been more than a dozen brutal attacks over the past six weeks – ranging from fire bombings to attacks on children and gun violence.

A firebomb attack in Scotland
Image:
A firebomb attack in Scotland

Victims left for dead, businesses up in flames

Gangsters have filmed themselves setting fire to buildings and homes connected to the associates and relatives of their bitter rivals.

The main aim, they boast, is to “exterminate” the opposition.

The taunting footage, accompanied by the song Keep On Running by The Spencer Davis Group, has been plastered over social media as part of a deliberate game of goading.

A 12-year-old boy and 72-year-old woman were left for dead when teenagers wearing balaclavas burst into a home in north Glasgow.

Garages and businesses have gone up in flames. Shots were fired at an Edinburgh house.

Signals are being sent of who wants control of Scotland’s dark criminal underworld.

A firebomb attack in Scotland that saw a man through an incendiary device through a building window
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A firebomb attack that saw a man throw an incendiary device through a building window

A house after it was set on fire by two individuals in Glasgow
Image:
The fire attack set to the song Keep On Running by The Spencer Davis Group

What’s caused the gang war?

The former director of the Scottish Crime and Drug Enforcement Agency, Graeme Pearson, explains how a “vacuum of leadership” is playing a part.

Last October, Glasgow-based cocaine kingpin Jamie Stevenson, known as The Iceman, was jailed after orchestrating a £100m cocaine shipment stashed in banana boxes from South America.

The mob leader was one of Britain’s most wanted, running his business like another on-screen criminal enterprise: The Sopranos.

The 59-year-old fugitive went on the run before eventually being hunted and apprehended by police while out jogging in the Netherlands.

Jamie Stevenson. Pic: Police Scotland
Image:
Jamie Stevenson. Pic: Police Scotland

Pic: Crown Office
Image:
Pic: Crown Office

‘Old scores to settle’

But paranoia was running rife about how this notorious gangster could be brought down. Was there a grass? Was it one of their own?

It further fuelled divisions and forced new alliances to be forged across Scotland’s organised criminal networks.

It wasn’t until The Iceman case came to court that it was revealed an encrypted messaging platform, known as EncroChat, had been infiltrated by law enforcement.

It ultimately led to Stevenson pleading guilty.

Ex-senior drug enforcement officer Mr Pearson told Sky News: “It is a complex picture because you have got people who are in prison who still want to have influence outside and look after what was their business.

“On the outside you’ve got wannabes who are coming forward, and they think this is an opportunity for them, and you have got others have old scores to settle that they could not settle when crime bosses were around.”

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Graham Pearson
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Graeme Pearson

Mr Pearson describes a toxic mix swirling to create outbursts of violence unfolding in Scotland.

He concluded: “All that mixes together – and the greed for the money that comes from drugs, and from the kudos that comes from being a ‘main man’, and you end up with competition, violence, and the kind of incidents we have seen over the past four to six weeks.”

New wave of violence ‘barbaric’

Glasgow man Mark Dempster is a former addict, dealer, and drug smuggler who is now an author and respected counsellor helping people quit drinking and drugs.

He describes the “jostle for power” as not a new concept among Glasgow’s high profile gangland families.

Mark Dempster is a former addict, dealer and drug smuggler who is now an author and respected counsellor
Image:
Mark Dempster

“There is always going to be someone new who wants to control the markets. It is like The Godfather. There is no difference between Scotland, Albania, or India,” he said.

Mr Dempster suggests a shift in tactics in Glasgow and Edinburgh in recent weeks, with 12-year-olds being viciously attacked in the middle of the night.

“It is barbaric. When young people, children, get pulled into the cross fire. It takes it to a different level.

“At least with the old mafiosa they had an unwritten rule that no children, no other family members. You would deal directly with the main people that were your opposition.”

Police Scotland is racing to get control of the situation, but declined to speak to Sky News about its ongoing operation.

It has been suggested 100 officers are working on this case, with “arrests imminent”.

But this is at the very sharp end of sophisticated criminal empires where the police are not feared, there are fierce vendettas and, clearly, power is up for grabs.

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Laws may need to be bolstered to crack down on exploitation of child ‘influencers’, senior MP suggests

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Laws may need to be bolstered to crack down on exploitation of child 'influencers', senior MP suggests

Laws may need to be strengthened to crack down on the exploitation of child “influencers”, a senior Labour MP has warned.

Chi Onwurah, chair of the science, technology and innovation committee, said parts of the Online Safety Act – passed in October 2023 – may already be “obsolete or inadequate”.

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Experts have raised concerns that there is a lack of provision in industry laws for children who earn money through brand collaborations on social media when compared to child actors and models.

This has led to some children advertising in their underwear on social media, one expert has claimed.

Those working in more traditional entertainment fields are safeguarded by performance laws, which strictly govern the hours a minor can work, the money they earn and who they are accompanied by.

The Child Influencer Project, which has curated the world’s first industry guidelines for the group, has warned of a “large gap in UK law” which is not sufficiently filled by new online safety legislation.

Official portrait of Chi Onwurah.
Pic: UK Parlimeant
Image:
Official portrait of Chi Onwurah.
Pic: UK Parlimeant

The group’s research found that child influencers could be exposed to as many as 20 different risks of harm, including to dignity, identity, family life, education, and their health and safety.

Ms Onwurah told Sky News there needs to be a “much clearer understanding of the nature of child influencers ‘work’ and the legal and regulatory framework around it”.

She said: “The safety and welfare of children are at the heart of the Online Safety Act and rightly so.

“However, as we know in a number of areas the act may already be obsolete or inadequate due to the lack of foresight and rigour of the last government.”

Victoria Collins, the Liberal Democrat spokesperson for science, innovation and technology, agreed that regulations “need to keep pace with the times”, with child influencers on social media “protected in the same way” as child actors or models.

“Liberal Democrats would welcome steps to strengthen the Online Safety Act on this front,” she added.

‘Something has to be done’

MPs warned in 2022 that the government should “urgently address the gap in UK child labour and performance regulation that is leaving child influencers without protection”.

They asked for new laws on working hours and conditions, a mandate for the protection of the child’s earnings, a right to erasure and to bring child labour arrangements under the oversight of local authorities.

However, Dr Francis Rees, the principal investigator for the Child Influencer Project, told Sky News that even after the implementation of the Online Safety Act, “there’s still a lot wanting”.

“Something has to be done to make brands more aware of their own duty of care towards kids in this arena,” she said.

Dr Rees added that achieving performances from children on social media “can involve extremely coercive and disruptive practices”.

“We simply have to do more to protect these children who have very little say or understanding of what is really happening. Most are left without a voice and without a choice.”

What is a child influencer – and how are they at risk?

A child influencer is a person under the age of 18 who makes money through social media, whether that is using their image alone or with their family.

Dr Francis Rees, principal investigator for the Child Influencer Project, explains this is an “escalation” from the sharing of digital images and performances of the child into “some form of commercial gain or brand endorsement”.

She said issues can emerge when young people work with brands – who do not have to comply with standard practise for a child influencer as they would with an in-house production.

Dr Rees explains how, when working with a child model or actor, an advertising agency would have to make sure a performance license is in place, and make sure “everything is in accordance with many layers of legislation and regulation around child protection”.

But, outside of a professional environment, these safeguards are not in place.

She notes that 30-second videos “can take as long as three days to practice and rehearse”.

And, Dr Rees suggests, this can have a strain on the parent-child relationship.

“It’s just not as simple as taking a child on to a set and having them perform to a camera which professionals are involved in.”

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The researcher pointed to one particular instance, in which children were advertising an underwear brand on social media.

She said: “The kids in the company’s own marketing material or their own media campaigns are either pulling up the band of the underwear underneath their clothing, or they’re holding the underwear up while they’re fully clothed.

“But whenever you look at any of the sponsored content produced by families with children – mum, dad, and child are in their underwear.”

Dr Rees said it is “night and day” in terms of how companies are behaving when they have responsibility for the material, versus “the lack of responsibility once they hand it over to parents with kids”.

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Two arrested on suspicion of murder after disappearance of woman in South Wales

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Two arrested on suspicion of murder after disappearance of woman in South Wales

Police investigating the disappearance of a woman in South Wales have arrested two people on suspicion of murder.

Paria Veisi, 37, was last seen around 3pm on Saturday 12 April when she left her workplace in the Canton area of Cardiff.

She was driving her car, a black Mercedes GLC 200, which was later found on Dorchester Avenue in the Penylan area on the evening of Tuesday 15 April.

South Wales Police said it was now treating her disappearance as a murder investigation.

A 41-year-old man and a 48-year-old woman, both known to Ms Veisi, have been arrested on suspicion of murder and remain in police custody.

Detective Chief Inspector Matt Powell said he currently had “no proof that Paria is alive”.

The senior investigating officer added: “[Ms Veisi’s] family and friends are extremely concerned that they have not heard from her, which is totally out of character.

“Paria’s family has been informed and we are keeping them updated.

“We have two people in custody, and at this stage we are not looking for anybody else in connection with this investigation.

“Our investigation remains focused on Paria’s movements after she left work in the Canton area on Saturday April 12.

“Extensive CCTV and house-to-house inquiries are being carried out by a team of officers and I am appealing for anybody who has information, no matter how insignificant it may seem, to make contact.”

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Ms Veisi is described as having long, curly black hair.

She was last seen wearing a black zip-up gym top over a red top, black trousers and trainers, and was carrying a small handbag.

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