For Shelley Mclean, every night is a sleepless one, just to keep her 11-year-old daughter alive.
Missy was born with a rare genetic condition that affects her breathing, digestion and movement.
She spent the first nine months of her life in hospital before coming home with a breathing tube in her throat, a feeding tube in her stomach, and a line into her bowel.
At first, the family had some NHS-funded nighttime care to help keep Missy safe while she slept.
But when her local NHS body decided she no longer met the threshold, that support was taken away.
Image: Missy has a breathing tube in her throat, a feeding tube in her stomach, and a line into her bowel
Now, Missy’s mother is responsible for her care.
“I’m her nurse, her physio, her carer,” says Shelley. “I don’t sleep properly because I’m scared she’ll stop breathing.
“They say we don’t meet the threshold – but I don’t know what more they need to see.”
Every night, Shelley prepares Missy’s medicines, checks her tubes, and monitors her breathing.
“This is an epilepsy medicine,” she says, holding up a syringe.
“If she’s not tolerating food orally, I put it down the tube.”
Despite her exhaustion, Shelley is grateful for the care that once saved her daughter’s life.
“I’m very grateful the NHS saved Missy – she wouldn’t be here without them. But they’re crippling the parents.”
Image: Shelley Mclean cares for her daughter Missy round the clock
The postcode lottery
Children like Missy who leave hospital but still need intensive support are meant to receive what’s called NHS continuing care – specialist help for those with the most complex, life-limiting or life-threatening needs.
But Sky News has seen new data which shows access to this care is deeply inconsistent across England, creating a postcode lottery that leaves many families struggling to survive without the help they require.
New figures obtained by Sky News reveal just how uneven continuing care has become.
NHS spending on children’s continuing care ranges from just 80p to £6 per head depending on where families live.
Out of almost 100,000 children in England with a life-limiting or life-threatening condition, only around 4% – roughly 4,400 – receive NHS continuing care funding.
And more than half of all disabled children referred for this kind of support are rejected.
Anna Bird, chief executive of charity Contact, says the system is leaving thousands of families on the brink.
“We’re not seeing the commitment to make sure those who need continuing care are getting it,” she told Sky News.
“Our research shows there’s a huge postcode lottery – families are running kind of little hospitals at home just to keep their children well and alive.
“They’re being let down by continuing care, and they’re not getting the support they need.”
In some areas, campaigners say local NHS bodies have cut back on support even for children with the most serious medical conditions.
Parents report being told their child no longer qualifies for help despite their needs remaining unchanged.
For Shelley, that decision means she rarely sleeps through the night.
“If I don’t go to her, she could be dead,” she says quietly. “She could have a fit and… you know, she could be dead.”
Image: Shelley, Missy and her brother
In a statement, NHS Cheshire and Merseyside said: “We understand Ms Mclean will be disappointed with the decision relating to her daughter’s funding.
“While we’re unable to comment on individual cases due to our commitment to patient confidentiality, all patients are reviewed jointly by health and care professionals to ensure they are receiving the most appropriate care for their needs.
“Patients who wish to discuss their funding decision are able to contact NHS Cheshire and Merseyside using the contact details included in their patient letters.”
But campaigners say that without national standards – and without the law forcing consistent assessments – those reviews will continue to vary wildly from one area to the next.
The result is that parents like Shelley find themselves trapped between two systems – the NHS and social care – neither of which can agree who is responsible.
“I’m not the type of person who wants to ask anyone for help,” she says. “But it’s brought me to my knees.”
For Shelley, that gap is more than bureaucratic. It’s personal, relentless, and exhausting.
“I would invite them to come and have a week in my position – to try to wake up every hour, on the hour, every night. Then they might understand.”
Campaigners say no parent should have to shoulder that burden alone – and they want ministers to act.
They’re calling on the government to make continuing care a statutory entitlement, with consistent assessments, proper funding, and transparency about who gets help and who doesn’t.
Until then, families like Shelley’s will continue to do the work of the NHS from their own homes – unpaid, unsupported, and exhausted.
Image: Shelley feeding Missy
The Department for Health and Social Care said: “Our thoughts go out to Shelley and Missy – everyone should have access to high-quality, compassionate care.
“As part of our 10-Year Health Plan, the government is shifting more healthcare out of hospitals and into the community, to ensure patients and their families can get the care they need, where and when they need it.
“Integrated Care Boards are responsible for meeting the needs of local people – including Children and Young People’s Continuing Care and ensuring the care requirements of people like Missy and Shelley are met.
“This government has set out best practice, and provided guidance around assessments, decision-making and agreeing care packages for Children and Young People’s Continuing Care.”
Prince Harry and six other household names are suing the publishers of the Daily Mail newspaper over alleged unlawful information gathering dating back 30 years.
The case has been ongoing since 2022 and is just one of several Harry has filed against media organisations since 2019 over alleged breaches of privacy, unlawful practices and false stories.
Associated Newspapers (ANL) – which also publishes The Mail on Sunday and MailOnline – strongly denies any wrongdoing.
A full trial is not expected to start at London’s High Court until January, but a pre-trial hearing, which helps manage the case and resolve any outstanding issues, is set to take place today.
Here is everything you need to know about the case.
What’s alleged?
The alleged unlawful acts are said to have taken place from 1993 to 2011, including the publisher hiring private investigators to secretly place listening devices inside cars and homes and paying police officials for inside information.
When bringing the lawsuit in 2022, lawyers for the claimants said they had become aware of “highly distressing” evidence revealing they had been victims of “abhorrent criminal activity” and “gross breaches of privacy” by Associated Newspapers.
Associated Newspapers denies the allegations, describing them as “preposterous smears”, and claims the legal action is “a fishing expedition by [the] claimants and their lawyers”.
The accusations include:
• The hiring of private investigators to secretly place listening devices inside people’s cars and homes;
• The commissioning of individuals to surreptitiously listen into and record people’s live, private telephone calls while they were taking place;
• The payment of police officials, with corrupt links to private investigators, for inside, sensitive information;
• The impersonation of individuals to obtain medical information from private hospitals, clinics, and treatment centres by deception;
• The accessing of bank accounts, credit histories and financial transactions through illicit means and manipulation.
Image: Pic: iStock
Who else is involved?
While Prince Harry is one of the key players, as a group litigation, he is not the only claimant.
The others include:
• Actress Elizabeth Hurley • Actress Sadie Frost • Sir Elton John and his husband, filmmaker David Furnish • Baroness Doreen Lawrence, mother of Stephen Lawrence • Former Liberal Democrat politician Sir Simon Hughes
Image: Sadie Frost. Pic: PA
Image: Baroness Doreen Lawrence. Pic: AP
They all allege they have been victims of “abhorrent criminal activity” and “gross breaches of privacy” by ANL.
David Sherborne is the lawyer representing all the claimants.
Image: Sir Elton John and his husband David Furnish (below). Pic: AP
Image: Pic: AP
What happened in 2023?
During a preliminary hearing in March 2023, Judge Matthew Nicklin was tasked with ruling whether the case can proceed to trial.
ANL had asked for the case to be struck out entirely, arguing the legal challenges against it were brought “far too late”, but David Sherborne called for the publisher’s application to be dismissed.
Lawyers for the publishers said the claims fell outside the statute of limitations – a law indicating that privacy claims should be brought with six years – and the claimants should have known, or could have found out, they had a potential case before October 2016.
Image: Prince Harry at the High Court in 2023
They also argued some aspects of the cases should be thrown out as they breach orders made by Lord Justice Leveson as part of his 2011 inquiry into media standards.
During the hearing, a number of the claimants attended the High Court, including Prince Harry, to the surprise of the British media.
Witness statements from all seven claimants were also released. The duke’s statement said he is bringing the claim “because I love my country” and remains “deeply concerned” by the “unchecked power, influence and criminality” of the publisher.
“If the most influential newspaper company can successfully evade justice, then in my opinion the whole country is doomed,” he said.
On 10 November 2023, Mr Justice Nicklin gave the go-ahead for the case to go to trial, saying ANL had “not been able to deliver a ‘knockout blow’ to the claims of any of these claimants”.
What’s happened since?
Earlier this year, lawyers for the claimants sought to amend their case to add a swathe of new allegations for the trial.
They argued that they should be allowed to rely on evidence that they said showed the Mail was involved in targeting Kate, the Princess of Wales.
However, Mr Justice Nicklin ruled this allegation was brought too late before trial.
In a further development in November, the High Court heard that a key witness in the case, private investigator Gavin Burrows, claimed his signature on a statement confirming alleged hacking had taken place, was forged.
Image: Lawyer David Sherborne is representing all the claimants
In the statement from 2021, Mr Burrows allegedly claimed to have hacked voicemails, tapped landlines, and accessed financial and medical information at the request of a journalist at the Mail On Sunday.
The statement was important, as five of the seven claimants involved in the case told the court they embarked on legal action against ANL based on evidence apparently obtained by Mr Burrows.
Mr Burrows previously retracted his statement in 2023, but the court heard he reiterated the denial to ANL’s lawyers in September this year.
It is now up to the claimant’s lawyer Mr Sherborne to decide if he still wants to call Mr Burrows as a witness for the trial.
Mr Justice Nicklin previously said if Mr Burrows gave evidence that was inconsistent with the evidence they had obtained, then he could apply to treat him as “hostile”.
Could the case end before going to trial?
In short, yes.
During pre-trial reviews, cases can either be settled or dismissed from court in both civil and criminal cases, meaning no trial will take place.
This happened in Harry’s case against News Group Newspapers (NGN), which publishes The Sun. The duke made similar accusations about NGN, which involved unlawful information gathering by journalists and private investigators.
Before an up-to 10-week trial began earlier this year, it was announced both sides had “reached an agreement” and that NGN had offered an apology to Harry and would pay “substantial damages”.
The settlement was reported to be worth more than £10m, mostly in legal fees.
Another of Harry’s legal cases, this time against Mirror Group Newspapers (MGN) over accusations of historical phone hacking, did go to trial.
The trial saw Harry take to the witness box, making him the first senior royal to give evidence in a courtroom since the 19th century.
In December 2023, the Honourable Mr Justice Fancourt concluded that the duke’s phone had been hacked “to a modest extent” between 2003 and 2009, and 15 of 33 articles he complained about were the product of unlawful techniques.
Bereaved families of black, minorities and migrant women who died after suffering violence and abuse have called on the prime minister to help end femicide.
At a Downing Street vigil on International Day for the Elimination of Violence Against Women, the group said urgent reforms to policing and sentencing are needed “to address systemic failures”.
Yasmin Javed, whose daughter Fawziyah Javed was killed after being pushed by her husband from Arthur’s Seat in Edinburgh, said authorities had ignored Fawziyah’s reports of abuse.
Image: Fawziyah Javed died after being pushed by her husband from Arthur’s Seat in Edinburgh
“It fell on deaf ears,” she told Sky News, explaining that Fawziyah, 31, who was pregnant when she died, had made complaints about her husband but had been murdered days before she was set to leave him.
“We’ve had our hearts ripped into millions of pieces. It’s not getting any easier, it’s getting more and more difficult.”
Tuesday’s vigil highlighted key legislative amendments the families, led by campaign group Southall Black Sisters, are championing.
The amendments include Banaz’s Law, named after 20-year-old Banaz Mahmod, who was subjected to an horrific assault, strangled and stuffed in a suitcase by family members on the orders of her father.
Image: The Downing Street vigil took place on International Day for the Elimination of Violence Against Women
The amendment seeks to explicitly recognise “honour-based” abuse as an aggravating factor in sentencing for relevant offences.
The families also want courts to impose sentences equivalent to murder for self-harm and suicides driven by domestic and “honour”-based abuse, and say the government must ensure all women have equal access to safety and support, regardless of immigration status.
Banaz Mahmod’s sister Bekhal, who testified against her relatives to help secure their conviction, said nearly two decades after the murder, efforts to protect women had not progressed.
Image: Banaz Mahmod was killed on the orders of her father
Speaking from an undisclosed location in the witness protection scheme, she said the murder “happened in 2006, and we’re almost in 2026 – that’s 20 years later. Not much has changed and it’s very, very disappointing.
“What happened to Banaz has happened, but what we could do is prevent it from happening to other people. I don’t understand why much more hasn’t been done to better the situation for others.”
A man charged with the murder of two women within five months of each other, and the rape of a third, has appeared in court.
Appearing at the Old Bailey via videolink on Wednesday, Simon Levy only spoke to confirm his name and was not asked to enter a plea to any of the charges.
Levy, 40, of Beaufoy Road, Tottenham, was charged in September with the murder of 39-year-old Sheryl Wilkins in Tottenham, north London, on 24 August.
While in custody, he was also charged with the murder of Carmenza Valencia-Trujillo, from Colombia, who died on the Aylesbury Estate, southeast London, in March.
Image: Levy is alleged to have murdered Carmenza Valencia-Trujillo in March. Pic: Met Police
Prosecutor Tom Little KC told the court that Ms Valencia-Trujillo was found in a block of flats that is “very largely disused” with few residents or passers-by except security guards.
He said: “The body of the deceased was found in the early evening of 17 March 2025 in a block of flats very largely disused, so it does not contain many residents nor many people passing by apart from the odd security officer who patrol the area for safety.”
It is alleged that he travelled to the area the day before and that he killed her during the course of a sexual encounter.
Image: Levy was also charged with the murder of Sheryl Wilkins. Pic: Met Police
Levy was also accused of grievous bodily harm with intent, non-fatal strangulation and two counts of rape against a third woman, who cannot be named for legal reasons, in Haringey, north London, on 21 January, police said.
The Met Police said on Monday that all three cases are now being treated as part of a single, joined investigation and a trial date has been set for June 2026 at the Old Bailey.