The families of premature babies face being pushed into poverty or missing out on time with their sick children amid the rising cost of living.
On average, parents are paying an extra £405 per week while their baby is in hospital, according to a survey of 1,928 people.
For many, it is a double-edged sword – the extra expenses come at a time when their household income has dropped, with statutory maternity pay of £156.66 per week (or 90% of average weekly earnings – whichever is lower).
One in seven babies born in the UK is admitted to a neonatal unit, according to Bliss – a charity for sick and premature babies.
While the majority are born full term (and on average spend a week receiving care), the families of the sickest babies face an agonising hospital stay – and a hefty bill at the end of it, exacerbated by the cost of living crisis.
Born weighing just 535g
Lauren Ormston’s pregnancy had been progressing normally when she suddenly went into labour at six months.
Baby Isla was given survival odds of 40% and was born weighing 1lb 2oz (535g) at 23 weeks. This would not even be her lowest weight – a few days later, it dropped to just 15oz (430g).
Lauren, 27, was allowed to cuddle her daughter for six minutes alongside her fiance Oliver Dewey, 31, before Isla was moved to the neonatal unit and ventilated.
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She had a bleed on her brain, a hole in her heart and kidney failure.
“The doctor just told us to take each hour as it comes,” Lauren told Sky News.
“I was devastated, I didn’t know what to say, think or do. Because I had just brought this little human into the world and now she was having to fight for her life. It wasn’t fair on her.”
130 days of travel
Isla spent 130 days in neonatal units at Ashford and St Peter’s Hospital in Surrey and Frimley Park Hospital in Camberley, and Lauren visited her every single day.
“There was not one day when I didn’t see her,” she said.
At St Peter’s Hospital, it was an 80-minute round trip – when Isla moved back to Frimley Park this was halved – although the family had to pay parking costs of £20 a week.
At one point, Isla was rushed to Great Ormond Street hospital for surgery on her eye, but Oliver was not allowed to stay on the ward, so had to pay £400 for a hotel for two nights to be near his daughter.
The hospital was unable to save the sight in Isla’s right eye – and the stay at Great Ormond cost the family £600.
Image: Isla being transported between neonatal units
Like many other parents surveyed by Bliss, travel was the biggest cost and Lauren spent around £150 a week on fuel. A tyre puncture en route one day added an extra £300.
Bliss said parents who are able to drive to the hospital spend £101 a week on average, while those who have to rely on public transport spend £119.
Despite spending more on travel, parents using public transport to see their babies are more likely to be in lower income brackets.
The unaffordable cost of travelling to and from the neonatal unit had a tangible impact on how involved parents can be in their baby’s care.
Some 84% of those who used public transport said that stopped them from being as involved as they wanted to be.
Expensive canteen food and takeaways
The cost of food and drink at hospitals is notoriously high and options are limited.
Bliss said: “Parents have little choice over where to buy food and drink while at the hospital and are reliant on expensive hospital canteens and franchises rather than being able to prepare food from scratch or shop around.
“The lack of choice is exacerbated by limited facilities on neonatal units.”
A recent report found that more than a quarter of hospitals (27%) don’t have a parent kitchen.
On average, parents spent £96 a week more than their regular food budget while their baby was in a neonatal unit.
Lauren and her fiance lived off hospital sandwiches and fast food – or quick pick-up meals – while Isla was in hospital.
“I had to keep eating, but I didn’t want to have anything in the house because I needed to be with Isla all the time,” she said.
The cost of life-sustaining equipment
When Isla returned home in July, she required oxygen for four months.
This ended last Friday – but the family still operates a sleep study machine that monitors her oxygen levels and an apnea monitor.
They are also looking to buy a CO2 monitor at a cost of £230.
Bliss found 74% of parents with a baby who had been discharged from a neonatal unit in the last year said they were concerned that it was somewhat or very likely that the rising cost of energy could stop them from keeping their home warm this winter – something essential for premature children.
Within the survey, two of the 24 respondents whose babies were currently using at-home medical equipment said the rising cost of energy had stopped them from using the devices their babies need.
Some 47% said they were concerned that the cost of energy may impact their ability to run this equipment in the future.
The charity is calling on the government and Ofgem to ensure energy companies cannot disconnect domestic energy support for households which include a vulnerable baby – and those who need to power at-home medical equipment.
It is also asking for an emergency neonatal fund to offer payments to cover extra energy costs caused by this equipment and for one to cover food and drink, travel, parking, accommodation and childcare costs associated with having a baby in neonatal care.
Oliver had to return to work three days after Isla was born, or risk using up all of his two-week paternity leave while Isla was in the neonatal unit.
“He had to, as much as it hurt him,” said Lauren.
“He wasn’t able to be there to see his daughter during the mornings, or change her nappy during the day, or help me. He had to go back to work so that he could help me pay for things.”
Bliss found on average households lost £2,994 in income over the time that their baby was in neonatal care.
Meanwhile, Lauren had to spend four months of her maternity leave watching Isla in hospital.
A new law, backed by the government, could allow parents whose babies require specialist care after birth to take additional time off work.
The Neonatal Care (Leave and Pay) Bill would allow parents to take up to 12 weeks of paid leave, in addition to maternity and paternity leave.
However, although the bill has passed its second reading in the House of Commons, it still must go through the House of Lords before it can become law, which means there is no immediate relief for parents such as Lauren and Oliver.
She now has to return to work just a few months after Isla is out of hospital and said she felt “cheated” from the time she will now lose with her daughter, all while paying £81 a day in nursery fees. This will suck up the majority of her paycheck, with what’s left going toward their mortgage.
“I am basically working to pay for nursery, and to try and keep a roof over our heads,” she said.
‘I would never forgive myself’
Isla will have chronic lung disease for the rest of her life, alongside blindness in one eye. The family is not sure what other problems her prematurity may bring, or if she will have any disabilities because of the bleed on her brain.
But for Lauren, whatever the cost she will continue – even if it means going into debt.
One in four families have had to borrow money or increase their debt because of their baby’s neonatal stay.
“I am concerned, but I won’t stop using it. Money is money at the end of the day,” Lauren said.
“The cost of energy is going to have a massive impact, but I know I can’t stop using it.
“Because I know if I do and something happened I would never forgive myself.”
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The streets of Britain have turned into “theatres of intimidation”, Kemi Badenoch has warned in a speech to mark the opening of the Conservative Party Conference in Manchester.
Speaking just days after a terror attack at a synagogue in the city left two people dead, the Tory leader claimed extremism “has gone unchecked” in the UK.
She said this had manifested in Pro-Palestine protests which are “in fact carnivals of hatred directed at the Jewish homeland”.
She cited the use of “asinine slogans” such as ‘Globalise the Intifada’, saying this “means nothing at all, if it doesn’t mean targeting Jewish people for violence”.
Ms Badenoch added: “So the message from this conference, from this party, from every decent and right-thinking person in this country must be that we will not stand for it any more. We cannot import and tolerate values hostile to our own.
“We must now draw a line and say that in Britain you can think what you like, and within the bounds of the law you can say what you like, but you have no right to turn our streets into the theatres of intimidation and we will not let you do so any more.“
Nearly 500 people were arrested over protests supporting the proscribed group Palestine Action in central London on Saturday.
Demonstrators defied calls from political leaders, including Prime Minister Sir Keir Starmer, to reconsider the event out of respect for the grief of the British Jewish community.
The chief of the Metropolitan Police, Sir Mark Rowley, also called for the event to be postponed, saying he was worried resources would be stretched and the ability of the force to protect communities would be compromised.
Image: Supporters at this year’s Tory party conference greet their leader Kemi Badenoch. Pic: PA
She said that shadow Northern Ireland Secretary Alex Burghart will lead a review into a union-wide implementation of leaving the ECHR, so voters have “a clear, thorough and robust plan, not the vague mush that we see day in, day out from Labour, nor the vacuous posturing that we see day in, day out from Reform”.
The plan has been condemned by Former Conservative justice secretary and Lord Chancellor Robert Buckland, who lost his seat at the 2024 election.
“I have seen first-hand how deeply this issue touches our constitution, our Union, and our international standing. It would be a profound mistake to go down this path,” he wrote in an article for Conservative Home.
The comments reflect how the issue has long divided the party, with “one nation” moderates like Mr Buckland opposed to the idea of leaving the ECHR, and others seeing it as necessary to get a grip on illegal migration and tackle Reform UK.
In a sign she won’t shy away from that fight, Ms Badenoch told GB News earlier that every Conservative candidate must sign up to her plan to leave the ECHR, or they would be barred from standing at the next election.
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The Tories are languishing in the polls behind Reform and Labour after suffering their worst-ever defeat at the election last year.
Ms Badenoch, who was elected to lead the party last November, ended her speech acknowledging there was a “mountain to climb” but insisting she was up for the fight.
“Britain needs deep change. But I reject the politics that everything must go, that everything must be torn down, that everything is broken,” she said.
“If we leave it to Labour or Reform, Britain will be divided. Only the Conservatives can bring this country back together.
“So, I say to you all as we start our conference, yes, we have a mountain to climb, but we have a song in our hearts, and we are up for the fight.”
It follows the arrests of nearly 500 peopleduring demonstrations in support of the proscribed group Palestine Action in central London on Saturday.
Protesters defied calls to rethink the event in the wake of the Manchester synagogue terror attack on Thursday, in which two Jewish worshippers were killed.
The new powers will allow police forces to consider the “cumulative impact” of protests, assessing previous activity, when deciding to impose limits on protesters.
The limits that could be imposed include moving demonstrators to a different place or “restricting the time that those protests can occur”, Ms Mahmood said.
She added: “It’s been clear to me in conversations in the last couple of days that there is a gap in the law and there is an inconsistency of practice.
“So I’ll be taking measures immediately to put that right and I will be reviewing our wider protest legislation as well, to make sure the arrangements we have can meet the scale of the challenge that we face.”
Image: A demonstration supporting Palestine Action on Saturday in central London. Pic: Reuters
Image: Police officers detain a protester during the mass protest. Pic: Reuters
The changes will be made through amendments to the Public Order Act, and anyone who breaches the new conditions will risk arrest and prosecution.
‘More flexibility to prevent disruptive protests’
The home secretary has written to chief constables in England and Wales to explain the new powers.
She wrote: “The government will bring forward legislation to increase the powers available to you to tackle the repeated disruptive protests we have seen and continue to provide the reassurance to communities that they need.
“Through upcoming legislation, we will amend sections 12 and 14 of the Public Order Act 1986 to allow senior officers to consider the cumulative impact of protests on local communities when they are imposing conditions on public processions and assemblies.
“This will allow you more flexibility to prevent disruptive protests from attending the same location and instruct organisers to move to a different site.”
The Greens and the Lib Dems said it was an attack on the right to protest.
Green Party leader Zack Polanski told Sky News: “Giving police sweeping powers to shut down protests because of their ‘cumulative impact’ is a cynical assault on the right to dissent. The whole point of protest is persistence; that’s how change happens. Do you think the suffragettes protested once and then gave up?”
Lib Dem home affairs spokesman Max Wilkinson said this will “do nothing” to tackle antisemitism “while undermining the fundamental right to peaceful protest”.
Earlier, Ms Mahmood said the right to protest was a “fundamental freedom” but this must be balanced “with the freedom of their neighbours to live their lives without fear”.
In a statement she said: “Large, repeated protests can leave sections of our country, particularly religious communities, feeling unsafe, intimidated and scared to leave their homes.
“This has been particularly evident in relation to the considerable fear within the Jewish community, which has been expressed to me on many occasions in these recent difficult days.
“These changes mark an important step in ensuring we protect the right to protest while ensuring all feel safe in this country.”
Tories ‘will support’ measures
Conservative leader Kemi Badenoch said her party will “of course support” the new measures but asked why it took “so long” for them to be introduced.
Speaking to the BBC’s Sunday with Laura Kuenssberg, she claimed that what happened in Manchester was foreseeable and not enough has been done to address fears over safety in the Jewish community.
Ms Mahmood addressed the Jewish communities’ concerns after being shown a clip of deputy prime minister David Lammy being heckled at a vigil on Friday.
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3:39
Home secretary reacts to moment Lammy was heckled
She told Sky News’ Trevor Phillips the government “of course” hears their strength of feeling and is “committed to dealing with antisemitism in all of its forms”, pointing to the “strengthening” of police powers announced today.
Asked if the reaction to Mr Lammy reflected anger at the government’s decision to recognise a Palestine state, she said it was important not to “elide” Thursday’s attack with the situation in the Middle East.
“People are entitled to their views and of course we were there to hear those views. What I would say is that the attack that took place, the person that’s responsible for that attack is the attacker himself,” she said.
“And, of course, four other people are in custody and the police investigation does need to take its course. It’s important that we don’t elide that into the wider questions of what’s going on in the Middle East.”
A man who helped barricade the Manchester synagogue has described how the terror attack unfolded.
Alan Levy said he was in the car park in the grounds of Heaton Park Hebrew Congregation Synagogue in Crumpsall when the incident started and he saw the attacker, who he called a “jihadist monster”.
“I was there when he crashed his car into the synagogue gates and ran down the security guard that was there and attacked a volunteer security guard and tried to gain access into the synagogue,” Mr Levy said in an interview with Sky News’ people and politics correspondent Nick Martin.
It was then that Mr Levy ran into the synagogue and sought to lock it down.
He and other congregants helped barricade the doors to stop the attacker from getting inside, as “he was shoulder-charging the doors trying to get in”.
“He was throwing plant pots at the glass. He was using a knife to try and get in. These brave men basically saved the community from further harm,” Mr Levy said.
“All I was thinking was ‘we’ve got to keep these doors closed’.
“He was trying each door in turn. When we realised which door he was going to, we moved doors so there was more pressure on the doors to keep them closed.”
Image: Alan Levy, helped barricade the synagogue
Two people were killed in the attack on Thursday, including one who died from a police bulletfired as officers shot dead the perpetrator, Jihad al Shamie.
The victims were named as Adrian Daulby, 53, a member of the congregation, and Melvin Cravitz, 66, a worshipper at the synagogue.
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1:43
Who was the Manchester synagogue attacker?
Mr Levy’s son, Marc, described the moment he first received news of the attack and said “it’s impossible to articulate the worry and concern” as he didn’t know whether his family was safe or not.
“I first knew that there was an incident when my phone started lighting up repeatedly and I realised that there was an attack on my synagogue,” he said.
“It’s a place where all my childhood memories of worshipping… pretty much going there throughout my whole life.
“I knew at that time that my father would have been on security at that time, as he is every morning, given that him and his friends are some of the first people who arrive.”
He said it was only when he saw his father on Sky News’ live feed that he realised he wasn’t one of the victims.
Six people were arrested over the attack but two have been released without charge.
Police revealed the attacker had been on bail over a suspected rape, but wasn’t on the radar of counter-terror police.
The Independent Office for Police Conduct (IOPC) is investigating the shooting – this is standard practice when a member of the public is killed – and will examine “whether police may have caused or contributed to the death” of Mr Daulby.
Al Shamie, 35, was named as the attacker on Thursday and is believed to be of Syrian descent.
He is understood to have been granted British citizenship when he was around 16, having entered the UK as a young child.
Police shot him dead seven minutes after the first emergency call as they feared he was wearing an explosive device – later identified as a fake.