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.
More on Health
Related Topics:
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.
Advertisement
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.”
A woman who thought she was being injected with Botox was left unable to swallow and doctors thought she had suffered a stroke – after she contracted a life-threatening illness from a potentially illegal product.
Nicola Fairley is one of dozens of people who have developed botulism linked to unlicensed anti-wrinkle injections.
She had the procedure done with her regular beautician after winning a Facebook competition for three areas of “Botox”.
Image: Nicola Fairley
“Within two or three hours my forehead and the sides of my eyes had started to freeze,” Nicola says.
“At first I thought ‘amazing’, that’s what I wanted – then it just carried on.”
Nicola was eventually sent to A&E in Durham, where she met several other patients who all had similar symptoms.
Doctors were stumped. “They thought I’d had a stroke,” she says.
More from UK
“We all had problems with our eyes, some of us with our breathing. I couldn’t swallow – they put me on nil by mouth because they were worried I would choke in the waiting room.”
Image: Doctors were worried Nicola could choke after she was injected with a suspected illegal product
It turns out all of the patients had recently had anti-wrinkle injections containing botulinum toxin.
Health officials believe they were imported, illegal products.
Botulism – the disease they caused – is so rare many doctors never see it in their entire careers.
It can cause symptoms including slurred speech and breathing problems, and can be deadly.
The disease is so unusual, and so many cases were coming in, that doctors exhausted their stocks of anti-toxin and had to ask hospitals as far away as London to get more.
The UK Health Security Agency has so far confirmed 38 cases of botulism linked to cosmetic toxin injections, but Sky News has been told of several more.
The outbreak began in the North East but cases have now been seen in the East of England and East Midlands as well.
There are only a handful of legal botulinum toxin products in the UK – of which Botox is one.
But cosmetic treatments are largely unregulated, with anyone allowed to inject products like fillers and toxins without any medical training.
Cheap, illegal products imported from overseas are easily available.
Image: Dr Steven Land
‘It’s the Wild West’
Dr Steven Land runs Novellus Aesthetics clinic in Newcastle upon Tyne. He worked for decades as an emergency medicine doctor before moving into aesthetics.
He says he has been warning health officials of an outbreak for years.
“It’s the Wild West,” Dr Land told Sky News.
“Because anyone can do this, there is a lack of knowledge around what is legal, what’s not legal, what is okay to be injected.
“These illegal toxins could have 50 units, 5,000 units or rat poison – there could be anything in there.”
Donald Trump has landed in Scotland for a four-day trip including high-level meetings – praising Sir Keir Starmer as “a good man” but calling illegal migration a “horrible invasion” that is “killing Europe”.
Mr Trump told reporters: “I like your prime minister. He’s slightly more liberal than I am… but he’s a good man… he got a trade deal done. It’s a good deal for the UK.”
The pair are expected to discuss potential changes to the UK-US trade deal which came into force last month.
Trump left Air Force One to head to Turnberry, one of his Scottish golf courses. Part of the trip will include the opening of another course in Aberdeenshire, billed as “the greatest 36 holes in golf”.
Image: Trump supporters waved as Air Force One landed. Pic: PA
“There’s no place like Turnberry. It’s the best, probably the best course in the world. And I would say Aberdeen is right up there,” the US president said.
“Sean Connery helped get me the [planning] permits. If it weren’t for Sean Connery, we wouldn’t have those great courses,” he added.
During the trip, President Trump will also hold discussions with Scotland’s First Minister John Swinney and EU Commission President Ursula von der Leyen, who is keen to secure a trade deal with the US.
Image: Donald Trump spoke to reporters after landing at Prestwick Airport, Ayrshire. Pic: AP
Mr Trump told reporters there was “a good 50-50 chance” of an agreement with the EU but added there were “maybe 20 different” sticking points.
EU diplomats say a deal could result in a broad 15% tariff on EU goods and half of the 30% Trump is threatening to impose by 1 August.
Image: He travelled to Turnberry, one of his Scottish golf resorts, amid tight security. Pic: Reuters
The US president touched on illegal immigration and gave European leaders a stark warning.
“You better get your act together or you’re not going to have Europe anymore. You got to get your act together,” he said.
“But you’re allowing it to happen to your countries and you got to stop this horrible invasion that’s happening to Europe. Immigration is killing Europe.”
Please use Chrome browser for a more accessible video player
1:30
What do Scots think of Trump visit?
He was also scathing about the installation of wind turbines across the continent.
“Stop the windmills. You’re ruining your countries,” he said. “It’s so sad. You fly over and you see these windmills all over the place, ruining your beautiful fields and valleys and killing your birds.”
Domestically, Mr Trump faces the biggest political crisis of his second term in office over his administration’s handling of files linked to disgraced financier and sex offender Jeffrey Epstein, who died in prison in 2019.
He faced another round of questions after stepping off Air Force One.
“You’re making a big thing over something that’s not a big thing. I’m focused on making deals, not on conspiracy theories that you are,” he said.
Mr Trump added that “now’s not the time” to discuss a pardon for Ghislaine Maxwell, Epstein’s imprisoned accomplice.
Please use Chrome browser for a more accessible video player
While the president’s visit did attract some enthusiastic flag-waving supporters at Prestwick Airport, he is also likely to trigger a number of protests, prompting Police Scotland to call in support from other forces in the UK.
The Stop Trump Scotland group has planned demonstrations on Saturday in Edinburgh, Aberdeen and Dumfries.
About 70% of Scots have an unfavourable opinion of Mr Trump, while 18% have a positive opinion, an Ipsos poll in March found.
Mr Trump is staying at his Turnberry property on Scotland’s west coast this weekend, before travelling to Aberdeenshire on Monday, where he will open a second 18-hole course.
He is due to return to the UK in September for a state visit hosted by the King – the first world leader in modern times to undertake two UK state visits.
Donald Trump has landed in Scotland ahead of a four-day trip, which includes high-level meetings, praising Sir Keir Starmer as “a good man” but also calling illegal migration a “horrible invasion” that was “killing Europe”.
Mr Trump told reporters: “I like your prime minister. He’s slightly more liberal than I am… but he’s a good man… he got a trade deal done. It’s a good deal for the UK.”
The pair are expected to discuss potential changes to the UK-US trade deal which came into force last month.
Trump left Air Force One to head to Turnberry, one of his Scottish golf courses. Part of the trip will include the opening of another course in Aberdeenshire, billed as “the greatest 36 holes in golf”.
Image: Trump supporters waved as Air Force One landed. Pic: PA
“There’s no place like Turnberry. It’s the best, probably the best course in the world. And I would say Aberdeen is right up there,” the US president said.
“Sean Connery helped get me the [planning] permits. If it weren’t for Sean Connery, we wouldn’t have those great courses,” he added.
During the trip, President Trump will also hold discussions with Scotland’s First Minister John Swinney and EU Commission President Ursula von der Leyen, who is keen to secure a trade deal with the US.
Image: Donald Trump spoke to reporters after landing at Prestwick Airport, Ayrshire. Pic: AP
Mr Trump told reporters there was “a good 50-50 chance” of an agreement with the EU but added there were “maybe 20 different” sticking points.
EU diplomats say a deal could result in a broad 15% tariff on EU goods and half of the 30% Trump is threatening to impose by 1 August.
Image: He travelled to Turnberry, one of his Scottish golf resorts, amid tight security. Pic: Reuters
The US president touched on illegal immigration and gave European leaders a stark warning.
“You better get your act together or you’re not going to have Europe anymore. You got to get your act together,” he said.
“But you’re allowing it to happen to your countries and you got to stop this horrible invasion that’s happening to Europe. Immigration is killing Europe,” he told reporters.
Please use Chrome browser for a more accessible video player
1:30
What do Scots think of Trump visit?
He was also scathing about the installation of wind turbines across Europe.
“Stop the windmills. You’re ruining your countries,” he said. “It’s so sad. You fly over and you see these windmills all over the place, ruining your beautiful fields and valleys and killing your birds.”
Domestically, President Trump faces the biggest political crisis of his second term in office over his administration’s handling of files linked to disgraced financier and sex offender Jeffrey Epstein, who died in prison in 2019.
He faced another round of questions after stepping off Air Force One. “You’re making a big thing over something that’s not a big thing. I’m focused on making deals, not on conspiracy theories that you are,” he said.
Mr Trump added that “now’s not the time” to discuss a pardon for Ghislaine Maxwell, Epstein’s imprisoned accomplice.
Please use Chrome browser for a more accessible video player
While the president’s visit did attract some enthusiastic flag-waving supporters at Prestwick Airport, he is also likely to trigger a number of protests, prompting Police Scotland to call in support from other forces in the UK.
The Stop Trump Scotland group has planned demonstrations on Saturday in Edinburgh, Aberdeen and Dumfries.
About 70% of Scots have an unfavourable opinion of Trump, while 18% have a positive opinion, an Ipsos poll in March found.
President Trump is staying at his Turnberry property on Scotland’s west coast this weekend, before travelling to Aberdeenshire on Monday, where he will open a second 18-hole course.
He is due to return to the UK in September for a state visit hosted by the King – the first world leader in modern times to undertake two UK state visits.