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.
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.
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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.
Image: 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.
Image: 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.”
Image: Liverpool’s captain Virgil van Dijk. Pic: Reuters
Image: Liverpool’s Ryan Gravenberch and Cody Gakpo (right) arrive at the funeral of Diogo Jota and Andre Silva. Pic: PA
Jota, 28, leaves behind his wife of only 11 days, Rute Cardoso, and three young children.
His younger brother, 25, was an attacking midfielder for Penafiel in the second tier of Portuguese football.
Liverpool manager Arne Slot, captain Virgil Van Dijk and teammates including Andy Robertson, Conor Bradley, Ryan Gravenberch, Cody Gakpo, Curtis Jones, Darwin Nunez and Joe Gomez were seen at the service.
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Former teammates Jordan Henderson, James Milner and Fabinho were also there.
Van Dijk carried a red wreath with Jota’s number 20, while Robertson had a wreath featuring number 30, Silva’s number at Penafiel.
Image: Manchester United and Portugal player Bruno Fernandes. Pic: PA
Image: Liverpool’s captain Virgil van Dijk and Liverpool’s player Andrew Robertson. Pic: Reuters
Some of Jota’s teammates in the Portuguese national side also attended, including Bruno Fernandes, of Manchester United, Ruben Dias and Bernardo Silva, of Manchester City, Joao Felix and Renato Veiga, of Chelsea, Nelson Semedo, from Wolves, Joao Moutinho and Rui Patricio.
Ruben Neves was one of the pallbearers after flying in from Florida where he played for Al Hilal in the Club World Cup quarter-final on Friday night.
‘More than a friend’
In a post published on Instagram before the service, he told Jota he had been “more than a friend, we’re family, and we won’t stop being that way just because you’ve decided to sign a contract a little further away from us!”
Jota’s fellow Liverpool midfielder, Alexis Mac Allister, said on Instagram: “I can’t believe it. I’ll always remember your smiles, your anger, your intelligence, your camaraderie, and everything that made you a person. It hurts so much; we’ll miss you. Rest in peace, dear Diogo.”
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Porto FC president Andre Villas-Boas and Portugal national team manager Roberto Martinez were also in attendance.
‘With us forever’
Speaking after the ceremony, Martinez said the period since their deaths had been “really, really sad days, as you can imagine, but today we showed we are a large, close family.
“Their spirit will be with us forever.”
The service was private, but the words spoken by the Bishop of Porto, Manuel Linda, were broadcast to those standing outside the church.
He told Jota’s children, who were not at the service, that he was praying for them specifically, as well as their mother and grandparents.
“There are no words, but there are feelings,” he said, adding: “We also suffer a lot and we are with you emotionally.”
The brothers died after a Lamborghini they were travelling in burst into flames following a suspected tyre blowout in the early hours of Thursday morning.
No other vehicles are said to have been involved in the incident.
Liverpool have delayed the return of their players for pre-season following Jota’s death and players past and present paid tribute to him and his brother on social media.
Rachel Reeves has hinted that taxes are likely to be raised this autumn after a major U-turn on the government’s controversial welfare bill.
Sir Keir Starmer’s Universal Credit and Personal Independent Payment Bill passed through the House of Commons on Tuesday after multiple concessions and threats of a major rebellion.
MPs ended up voting for only one part of the plan: a cut to universal credit (UC) sickness benefits for new claimants from £97 a week to £50 from 2026/7.
Initially aimed at saving £5.5bn, it now leaves the government with an estimated £5.5bn black hole – close to breaching Ms Reeves’s fiscal rules set out last year.
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6:36
Rachel Reeves’s fiscal dilemma
In an interview with The Guardian, the chancellor did not rule out tax rises later in the year, saying there were “costs” to watering down the welfare bill.
“I’m not going to [rule out tax rises], because it would be irresponsible for a chancellor to do that,” Ms Reeves told the outlet.
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“We took the decisions last year to draw a line under unfunded commitments and economic mismanagement.
“So we’ll never have to do something like that again. But there are costs to what happened.”
Meanwhile, The Times reported that, ahead of the Commons vote on the welfare bill, Ms Reeves told cabinet ministers the decision to offer concessions would mean taxes would have to be raised.
The outlet reported that the chancellor said the tax rises would be smaller than those announced in the 2024 budget, but that she is expected to have to raise tens of billions more.
Sir Keir did not explicitly say that she would, and Ms Badenoch interjected to say: “How awful for the chancellor that he couldn’t confirm that she would stay in place.”
In her first comments after the incident, Ms Reeves said she was having a “tough day” before adding: “People saw I was upset, but that was yesterday.
“Today’s a new day and I’m just cracking on with the job.”
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“In PMQs, it is bang, bang, bang,” he said. “That’s what it was yesterday.
“And therefore, I was probably the last to appreciate anything else going on in the chamber, and that’s just a straightforward human explanation, common sense explanation.”
The family and friends of Diogo Jota and his brother Andre Silva have been joined by Liverpool stars past and present and other Portuguese players at the pair’s funeral near Porto.
Pictures below show the funeral at the Igreja Matriz de Gondomar church in the town of Gondomar near Porto. Click here for our liveblog coverage of the day’s events.
Image: Diogo Jota’s wife Rute Cardoso arrives for the funeral of him and his brother Andre Silva. Pic: Reuters
Image: Liverpool players Virgil van Dijk and Andrew Robertson arrive for the funeral. Pic: Reuters
Image: Van Dijk carried a wreath with Jota’s number 20 while Andrew Robertson’s had a 30 for Andre Silva. Pic: Reuters
Image: Liverpool captain Virgil van Dijk. Pic: Reuters
Image: Portugal player Ruben Neves arrives at the funeral. Pic: PA
Image: Liverpool’s Joe Gomez and manager Arne Slot arrive at the funeral of Diogo Jota and Andre Silva. Pic; PA
Image: Liverpool’s Ryan Gravenberch and Cody Gakpo (right) arrive at the funeral of Diogo Jota and Andre Silva
Image: Manchester City and Portugal player Bernardo Silva arrives at the funeral. Pic: AP
Image: The coffins are carried to the church. Pic: PA
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2:27
Miguell Rocha played with Jota for around ten years with Gondomar Sport Clube in Portugal.
Image: People line up to enter the church. Pic: AP
Image: Pallbearers carry the coffins of Diogo Jota and his brother Andre Silva
Image: Pic: Reuters
Image: Pic: AP
Image: People gather outside the Chapel of the Resurrection. Pic: Reuters
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0:22
The former captain was seen wiping away tears as he read messages and laid his tribute down.
Image: Fans pay their respects outside Anfield in Liverpool. Pic: Reuters
Image: A board with a picture of Diogo Jota outside Anfield Stadium. Pic: PA
Image: The coffins are carried to the church. Pic: PA