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.”
Specialist investigation teams for rape and sexual offences are to be created across England and Wales as the Home Secretary declares violence against women and girls a “national emergency”.
Shabana Mahmood said the dedicated units will be in place across every force by 2029 as part of Labour’s violence against women and girls (VAWG) strategy due to be launched later this week.
The use of Domestic Abuse Protection Orders (DAPOs), which had been trialled in several areas, will also be rolled out across England and Wales. They are designed to target abusers by imposing curfews, electronic tags and exclusion zones.
The orders cover all forms of domestic abuse, including economic abuse, coercive and controlling behaviour, stalking and ‘honour’-based abuse. Breaching the terms can carry a prison term of up to 5 years.
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Govt ‘thinking again’ on abuse strategy
Nearly £2m will also be spent funding a network of officers to target offenders operating within the online space.
Teams will use covert and intelligence techniques to tackle violence against women and girls via apps and websites.
A similar undercover network funded by the Home Office to examine child sexual abuse has arrested over 1,700 perpetrators.
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Abuse is ‘national emergency’
Home Secretary Shabana Mahmood said in a statement: “This government has declared violence against women and girls a national emergency.
“For too long, these crimes have been considered a fact of life. That’s not good enough. We will halve it in a decade.
“Today we announce a range of measures to bear down on abusers, stopping them in their tracks. Rapists, sex offenders and abusers will have nowhere to hide.”
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Angiolini Inquiry: Recommendations are ‘not difficult’
The government said the measures build on existing policy, including facial recognition technology to identify offenders, improving protections for stalking victims, making strangulation a criminal offence and establishing domestic abuse specialists in 999 control rooms.
But the Conservatives said Labour had “failed women” and “broken its promises” by delaying the publication of the violence against women and girls strategy.
Shadow Home Secretary, Chris Philp, said that Labour “shrinks from uncomfortable truths, voting against tougher sentences and presiding over falling sex-offender convictions. At every turn, Labour has failed women.”
There have been no migrant arrivals in small boats crossing the Channel for 28 days, according to Home Office figures.
The last recorded arrivals were on 14 November, making it the longest uninterrupted run since autumn 2018 after no reported arrivals on Friday.
However, a number of Border Force vessels were active in the English Channel on Saturday morning, indicating that there may be arrivals today.
So far, 39,292 people have crossed to the UK aboard small boats this year – already more than any other year except 2022.
The record that year was set at 45,774 arrivals.
It comes as the government has stepped up efforts in recent months to deter people from risking their lives crossing the Channel – but measures are not expected to have an impact until next year.
Image: Debris of a small boat used by people thought to be migrants to cross the Channel lays amongst the sand dunes in Gravelines, France. Pic: PA
December is normally one of the quietest for Channel crossings, with a combination of poor visibility, low temperatures, less daylight and stormy weather making the perilous journey more difficult.
The most arrivals recorded in the month of December is 3,254, in 2024.
Deputy Prime Minister David Lammy met with ministers from other European countries this week as discussions over possible reform to the European Convention on Human Rights (ECHR) continue.
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France agrees to start intercepting small boats
The issue of small boat arrivals – a very small percentage of overall UK immigration – has become a salient issue in British politics in recent years.
The King has shared in a television address that, thanks to early diagnosis, his cancer treatment can be reduced in the new year.
In a televised address, Charles said his “good news” was “thanks to early diagnosis, effective intervention and adherence to doctors’ orders”.
“This milestone is both a personal blessing and a testimony to the remarkable advances that have been made in cancer care in recent years,” he added.
“Testimony that I hope may give encouragement to the 50% of us who will be diagnosed with the illness at some point in our lives.”
The King announced in February 2024 that he had been diagnosed with cancer and was beginning treatment.
The monarch postponed all public-facing engagements, but continued with his duties as head of state behind palace walls, conducting audiences and Privy Council meetings.
He returned to public duties in April last year and visited University College Hospital Macmillan Cancer Centre in central London with the Queen and discussed his “shock” at being diagnosed when he spoke to a fellow cancer patient.
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Sources suggested last December his treatment would continue in 2025 and was “moving in a positive direction”.
Image: The King began returning to public duties in April last year. File pic: PA
The King has chosen not to reveal what kind of cancer he has been treated for. Palace sources have partly put that down to the fact that he doesn’t want one type of cancer to appear more significant or attract more attention than others.
In a statement after the speech aired, a Buckingham Palace spokesperson said: “His Majesty has responded exceptionally well to treatment and his doctors advise that ongoing measures will now move into a precautionary phase.”
Sir Keir Starmer praised the video message as “a powerful message,” and said: “I know I speak for the entire country when I say how glad I am that his cancer treatment will be reduced in the new year.
“Early cancer screening saves lives.”
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Watch: King Charles gives update on treatment
Early detection can give ‘the precious gift of hope’
His message on Friday was broadcast at 8pm in support of Stand Up To Cancer, a joint campaign by Cancer Research UK and Channel 4.
In an appeal to people to get screened for the disease early, the King said: “I know from my own experience that a cancer diagnosis can feel overwhelming.
“Yet I also know that early detection is the key that can transform treatment journeys, giving invaluable time to medical teams – and, to their patients, the precious gift of hope. These are gifts we can all help deliver.”
Charles noted that “at least nine million people in our country are not up to date with the cancer screenings available to them,” adding: “That is at least nine million opportunities for early diagnosis being missed.
“The statistics speak with stark clarity. To take just one example: When bowel cancer is caught at the earliest stage, around nine in ten people survive for at least five years.
“When diagnosed late, that falls to just one in ten. Early diagnosis quite simply saves lives.”
after months of uncertainty, some relief and reassurance for the King
This is a rare but positive update. The King in his own words speaking about his cancer.
And it’s good news.
Since his diagnosis, he’s received weekly treatment. His work schedule has had to fit around the appointments. And while it’s not stopping, it is being significantly reduced.
He’s responded well, and his recovery has reached, we understand, a very positive stage.
The King’s decision to speak publicly and so personally is unusual.
He has deliberately chosen the moment, supporting the high-profile Stand Up To Cancer campaign, and the launch of a national online screening checker.
It still hasn’t been revealed what kind of cancer he has. And there’s a reason – firstly, it’s private information.
But more importantly, the King knows the power of sharing his story. And with it, the potential to support the wider cancer community.
We are once again seeing a candid openness from the Royal Family. Earlier this year, the Princess of Wales discussed the ups and downs of her cancer journey.
These moments signal a shift towards greater transparency on matters the Royal Family once kept entirely private.
For millions facing cancer, the King’s update is empathy and encouragement from someone who understands.
And after months of uncertainty, for the King himself, some relief and reassurance.
Minor inconvenience of screening ‘a small price to pay’
The King acknowledged that people often avoid screening “because they imagine it may be frightening, embarrassing or uncomfortable”. But, he added: “If and when they do finally take up their invitation, they are glad they took part.
“A few moments of minor inconvenience are a small price to pay for the reassurance that comes for most people when they are either told either they don’t need further tests, or, for some, are given the chance to enable early detection, with the life-saving intervention that can follow.”
Giving his “most heartfelt thanks” to doctors, nurses, researchers and charity workers, the King added: “As I have observed before, the darkest moments of illness can be illuminated by the greatest compassion. But compassion must be paired with action.
“This December, as we gather to reflect on the year past, I pray that we can each pledge, as part of our resolutions for the year ahead, to play our part in helping to catch cancer early.
“Your life – or the life of someone you love – may depend upon it.”