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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
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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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Prince William visibly moved during reunion with bereaved mother

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Prince William visibly moved during reunion with bereaved mother

Prince William has fought back tears as he was reunited with a woman who lost her husband to suicide after the death of her young son.

William became visibly emotional while talking to Rhian Mannings during a short film released to mark World Mental Health Day and to launch a £1m project aimed at preventing suicide.

It was always going to be a difficult conversation because of Rhian’s heartbreaking experiences, but both wanted to record the video to highlight the taboo that still exists around suicide.

In 2012, Rhian’s one-year-old son George died suddenly from a hidden illness. Just five days later, her husband Paul died by suicide.

In a deeply moving discussion, William asks Rhian what she would say to Paul now if she could, with her replying: “There’s only one thing I would ever say to him if I had time with him, and that would be, ‘Why didn’t you speak to me?’ I think… I ask myself that every single day.

“He was absolutely devastated, he did keep blaming himself that weekend.

“But I would just like to sit him down like this and just say, ‘Why didn’t you come to me?’ Because he’s missed out on just so much joy, and we would have been okay. And I think that’s what the hardest thing is, we would have been okay.”

Prince William speaks to Rhian Mannings. Pic: PA/Kensington Palace
Image:
Prince William speaks to Rhian Mannings. Pic: PA/Kensington Palace

But she then stops and says to William, “Are you okay?” as you see him on camera looking visibly upset, and he simply replies: “I’m sorry. It’s just, it’s hard to ask these questions.”

Filmed in Rhian’s home in Cardiff, they also talk about the harmful taboo that still exists around suicide.

William says: “Unfortunately, there’s still a lot of stigma around suicide. Did you feel that at the time?”

Responding, Rhian says: “I was quite surprised by it, I’d never been touched by suicide, it was something that happened in the news. Nobody would talk about it or actually say what happened. And I found that really confusing at the time”.

Read More from Sky News:
King and Prince William step out together for rare event
Princess of Wales: Phones creating ‘epidemic of disconnection’

The film marks the launch of the Royal Foundation’s Suicide Prevention Network, backed by more than 20 organisations and funding of over £1 million from the Foundation. It aims to transform suicide prevention across the UK.

Rhian’s charity, 2Wish, forms part of the new network. She set up the charity to make sure others who lost a child suddenly would receive the bereavement support they need and deserve.

Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK

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Madeleine McCann’s sister tells court ‘stalker’ sent edited images to ‘prove’ she was missing girl

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Madeleine McCann's sister tells court 'stalker' sent edited images to 'prove' she was missing girl

Madeleine McCann’s sister has said her family’s alleged stalker sent “creepy” messages about “flashbacks” and edited images to try to show a family resemblance.

Amelie McCann told a court that Julia Wandelt was “desperate” to convince her she was missing Madeleine and had claimed her memories included playing ‘ring-a-ring-a-roses’ as a child.

The court heard Wandelt allegedly sent the 20-year-old numerous social media messages and letters. The first, in January 2024, allegedly read: “I know so many things. I don’t know if this is the real account for Amelie McCann but I can tell you my memories.”

As it happened: Madeleine McCann’s sister tells trial of ‘creepy’ messages

Ms McCann told Leicester Crown Court it was “quite disturbing that she’s coming up with these supposed memories,” as she was clearly not her sister.

“It makes me feel quite uncomfortable because it is quite creepy she is giving those details and trying to play with my emotions,” she said.

Madeleine McCann disappeared in Praia da Luz, Portugal in May 2007. She has never been found.

Wandelt, 24, from Lubin in Poland, denies subsequently stalking the family.

Julia Wandelt (left) and Karen Spragg at Leicester Crown
Pic: Elizabeth Cook/PA
Image:
Julia Wandelt (left) and Karen Spragg at Leicester Crown
Pic: Elizabeth Cook/PA

However, Madeleine‘s sister told the trial Wandelt had sent “persistent” messages urging her and her mother to take a DNA test, as well as images that were “clearly altered or edited”.

In one instance, she allegedly printed pictures of herself and Amelie McCann and sent them to the family’s home address.

A separate online message is said to have shown an image of her and Wandelt side-by-side.

“She’d clearly edited the pictures to make me look more like her, which was disturbing,” Ms McCann told the court. “I didn’t look like that and I knew it had been changed.”

“She is Polish and has Polish family who are her parents. It didn’t make any sense to me,” she added.

Madeleine McCann
Image:
Madeleine McCann

Amelie McCann gave evidence remotely on Thursday, a day after her parents also described the distress they had felt, including when the defendants allegedly turned up at their house last December.

She told the court she was scared by a message from Wandelt, which allegedly stated she would “do whatever to prove my identity” as Madeleine.

“It shows you the lengths she would go to, to try and get heard, which is a bit scary because you don’t know what she would do next,” said Ms McCann.

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Kate and Gerry McCann give evidence in court

She said she had blocked Wandelt on multiple social media sites, but that her alleged actions were hardest for her mother, Kate.

“It definitely took a toll on her and her wellbeing because all the time her phone would be going off and it would be Julia,” she said.

Following the alleged December visit by Wandelt and her co-defendant 61-year-old Cardiff woman Karen Spragg – who also denies stalking – Ms McCann said she returned home from university and her parents had strengthened security.

Co-defendant Karen Spragg. Pic: PA
Image:
Co-defendant Karen Spragg. Pic: PA

They told her there was “an alarm we could press and alert the police,” the court heard.

‘Upsetting and disrespectful’

Amelie’s twin, Sean McCann, also gave evidence via a written statement in which he said Wandelt had caused a “great deal of stress”.

He said her claim to be his sister was “upsetting” and “deeply disturbing” – but that he felt “guilty” for feeling that way as he believes she might be suffering with a mental health condition.

However, he added: “If she is fully aware she is not Madeleine, yet makes these claims she is, that will be very upsetting for me.”

Sean McCann, 20, told the court he had also received Instagram messages from Wandelt but immediately blocked her.

A friend of the McCanns, Ellie McQueen, was the final witness on Thursday morning and said Wandelt had sent her “relentless” messages online.

She told jurors the first was on Facebook in June 2024 from the profile “Julia Julia”.

Ms McQueen said Wandelt asked for help to contact the McCanns: “She seemed to know my mum was very close with Kate,” she told the court.

“She was trying to send me DNA evidence to say she is Maddie,” she told the court, adding that Wandelt seemed “upset and aggravated”.

One message allegedly sent by the defendant asks why Kate and Gerry McCann did not turn up to a vigil for Madeleine in their village, which she attended.

In other messages, Wandelt allegedly said she “remembered” a life with Kate and Gerry McCann and even claimed to have the same “spot in my right eye” and “lots of the same moles” as Madeleine.

The trial continues.

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Discord hack shows dangers of online age checks as internet policing hopes put to the test

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Discord hack shows dangers of online age checks as internet policing hopes put to the test

Messaging platform Discord has said the official ID photos of around 70,000 users have been stolen by hackers.

The app, which is popular with gamers and teenagers, said the hackers targeted a firm responsible for verifying the ages of its users. Discord said its own platform was not breached.

The stolen data could include personal information, partial credit card numbers and messages with Discord’s customer service agents, the firm said.

No full credit card details, passwords or messages and activity beyond conversations with Discord customer support were leaked, it added.

Discord said it had revoked the third-party service’s access and was continuing to investigate. It said all affected users have been contacted.

“Looking ahead, we recommend impacted users stay alert when receiving messages or other communication that may seem suspicious,” it said.

Until recently, a hack like this could not have happened, because companies had no need to process and collect proofs of age.

More on Cyber Attacks

Now, so many governments are following the UK and introducing age verification for unsuitable or pornographic content that a company like Discord has to roll out age checks for a decent portion of its 200 million active users.

It’s a bit like the way that shops have to check your age if you’re buying alcohol – only because it’s online, it comes with a lot of additional complications.

Pic: Shutterstock
Image:
Pic: Shutterstock

A shop, for instance, won’t keep a copy of your passport once they’ve checked your age.

And it definitely won’t keep it in a massive (yet strangely light) safe along with thousands of other passport photocopies, stored right by its front door, ready to be taken.

Online, it’s surprisingly easy to do just that.

Read more on Sky News:
AI ‘distorting women online’
Pros and cons of digital IDs
Impact of new online safety rules

It’s worth noting that the age verification system used by Discord wasn’t hacked itself. That system asked people to take a photo of themselves, then used software to estimate their age. Once the check was complete, the image was immediately deleted.

The problem came with the appeals part of the process, which was supplied to Discord by an as-yet-unnamed third party.

If someone thought that the age verification system had wrongly barred them from Discord they could send in a picture of their ID to prove their age. This collection of images was hacked. As a result, Discord says, more than 70,000 IDs are now in the possession of hackers.

(The hackers themselves claim that the number is much bigger – 2,185,151 photos. Discord says this is wrong and the hackers are simply trying to extort money. It’s a messy situation.)

There are ways to make age verification safer. Companies could stop storing photo ID, for instance (although then it would be impossible to know for sure if their checks were correct).

And advocates of ID cards will point out that a proper government ID could avoid the need to send pictures of your passport simply to prove your age. You’d use your digital ID instead, which would stay safely on your device.

But the best way to stop data being hacked is not to collect it in the first place.

We’re at the start of a defining test – can governments actually police the internet? Or will the measures that are supposed to make us safer actually end up making us less secure?

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