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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.

Isla - Lauren Ormston - Neonatal cost of living

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.

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.”

Isla - Lauren Ormston - Neonatal cost of living

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.

Isla - Lauren Ormston - Neonatal cost of living
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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.

Isla - Lauren Ormston - Neonatal cost of living

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.

Isla- Lauren - neonatal cost of living

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.

Isla - Lauren Ormston - Neonatal cost of living

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.

Read more on the cost of living crisis:
Six in 10 adults struggling to keep up with their bills
Millions skip meals or struggle to buy healthy food

How much will my energy bills increase next year?

Isla - Lauren Ormston - Neonatal cost of living

‘I feel cheated’: Returning to work

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.

Isla - Lauren Ormston - Neonatal cost of living
Lauren Ormston and fiance Oliver Dewey

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.

Isla - Lauren Ormston - Neonatal cost of living

‘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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UK economy grows by 0.1% between July and September – slower than expected

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UK economy grows by 0.1% between July and September - slower than expected

The UK economy grew by 0.1% between July and September, according to the Office for National Statistics (ONS).

However, despite the small positive GDP growth recorded in the third quarter, the economy shrank by 0.1% in September, dragging down overall growth for the quarter.

The growth was also slower than what had been expected by experts and a drop from the 0.5% growth between April and June, the ONS said.

Economists polled by Reuters and the Bank of England had forecast an expansion of 0.2%, slowing from the rapid growth seen over the first half of 2024 when the economy was rebounding from last year’s shallow recession.

And the metric that Labour has said it is most focused on – the GDP per capita, or the economic output divided by the number of people in the country – also fell by 0.1%.

Reacting to the figures, Chancellor of the Exchequer Rachel Reeves said: “Improving economic growth is at the heart of everything I am seeking to achieve, which is why I am not satisfied with these numbers.

“At my budget, I took the difficult choices to fix the foundations and stabilise our public finances.

“Now we are going to deliver growth through investment and reform to create more jobs and more money in people’s pockets, get the NHS back on its feet, rebuild Britain and secure our borders in a decade of national renewal,” Ms Reeves added.

The sluggish services sector – which makes up the bulk of the British economy – was a particular drag on growth over the past three months. It expanded by 0.1%, cancelling out the 0.8% growth in the construction sector.

The UK’s GDP for the most recent quarter is lower than the 0.7% growth in the US and 0.4% in the Eurozone.

The figures have pushed the UK towards the bottom of the G7 growth table for the third quarter of the year.

It was expected to meet the same 0.2% growth figures reported in Germany and Japan – but fell below that after a slow September.

Read more from Sky News:
Chancellor vows to rip up financial red tape
Massive winter fuel payment ‘cut’ no one ever talks about

The pound remained stable following the news, hovering around $1.267. The FTSE 100, meanwhile, opened the day down by 0.4%.

The Bank of England last week predicted that Ms Reeves’s first budget as chancellor will increase inflation by up to half a percentage point over the next two years, contributing to a slower decline in interest rates than previously thought.

Announcing a widely anticipated 0.25 percentage point cut in the base rate to 4.75%, the Bank’s Monetary Policy Committee (MPC) forecast that inflation will return “sustainably” to its target of 2% in the first half of 2027, a year later than at its last meeting.

The Bank’s quarterly report found Ms Reeves’s £70bn package of tax and borrowing measures will place upward pressure on prices, as well as delivering a three-quarter point increase to GDP next year.

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Meeting the deeply radical anti-tax group that is ‘growing in popularity’

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Meeting the deeply radical anti-tax group that is 'growing in popularity'

“If you are a member of something, it means you’ve accepted membership. Anything with ‘ship’ on the end, it’s giving you a clue: it’s telling you that’s maritime law. That means you’ve entered into a contract.”

This isn’t your standard legal argument and it is becoming clear that I am dealing with an unusual way of looking at the world.

I’m in the library of a hotel in Leicestershire, a wood-panelled room with warm lighting, and Pete Stone, better known as Sovereign Pete, is explaining how “the system” works. Mr Stone is in his mid-50, bald with a goatee beard and wearing, as he always does for public appearances, a black T-shirt and black jeans.

With us are six other people, mainly dressed in neat jumpers. They’re members of the Sovereign Project (SP), an organisation Mr Stone founded in 2020, which, he says, now has more than 20,000 paying members.

As arcane as this may sound, it represents a worldview that is becoming more influential – and causing problems for authorities. Loosely, they’re defined as “sovereign citizens” or “freemen on the land”.

Sky News meets members of the Sovereign Project
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The Sovereign Project claims to now have 20,000 paying members in the UK

Their fundamental point is that nobody is required to obey laws they have not specifically consented to – especially when it comes to tax. They have hundreds of thousands of followers in the UK across platforms including YouTube, Facebook and Telegram.

Increasingly, they are coming into conflict with governments and the law. Sovereign citizens have ended up in the High Court in recent months, challenging the legalities of tax bills and losing on both occasions.

More on Leicestershire

In October, four people were sentenced to prison for the attempted kidnapping of an Essex coroner, who they saw as acting unlawfully. The self-appointed “sheriffs” attempted to force entry to the court, one of them demanding: “You guys have been practising fraud!”

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Moment ‘cult’ tries to kidnap coroner

The Sovereign Project is not connected to any of those cases, nor does it promote any sort of political action, let alone violence.

Instead, they are focused on issues like questioning the obligation to pay taxes, as Mr Stone explains, referencing the feudal system that operated in the Middle Ages.

“Do you know about the feudal system when people were slaves and were forced to pay tax?” he asks.

“Now, unless the feudal system still operates today, and we still have serfs and slaves, then the only way that you can pay taxes is to have a contract, you have to agree to it and consent to it.”

Another member, Karl Deans, a 43-year-old property developer who runs the SP’s social media, says: “We’re not here to dodge tax.”

Local government tends to be a target beyond just demands for tax. Mr Stone speaks of “council employee crimes”.

I ask whether, considering the attempted kidnapping in Essex, there is a danger that people will listen to these accusations of crimes by councils and act on them.

“Well that’s proved,” Mr Stone says. “We only deal with facts.”

Sky News meets members of the Sovereign Project
Image:
Sky’s Tom Cheshire (second left) meets ‘Sovereign Pete’ (left) and other groups members

Evidence suggests this approach is becoming an issue for councils across the UK, as people search online for ways to avoid paying tax.

Sky News analysis shows that out of 374 council websites covering Great Britain, at least 172 (46%) have pages responding to sovereign citizen arguments around avoiding paying council tax. They point out that liability for council tax is not dependent on consent, or a contract, and instead relies on the Local Government Finance Act 1992, voted on by Parliament.

But the Sovereign Project’s worldview extends beyond council tax. It is deeply anti-establishment, at times conspiratorial. Stone suggests the summer riots may have been organised by the government.

“The sovereign fraternity operates above all of this,” he says. “We look down at the world like a chessboard. We see what’s going on.”

He explains that, really, the UK government isn’t actually in control: there is a shadow government above them.

“These are the people who control government,” he explains.

“A lot of people say this could be the crown council of 13, this could be a series of Italian families.”

People protest in Sunderland city centre following the stabbing attacks on Monday in Southport.
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Violence broke out in numerous towns and cities in August. Pic: PA

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Professor Christine Sarteschi, an expert in sovereign citizens at Chatham University, Pittsburgh, says she’s worried about the threat sovereign citizens may pose to the rule of law, especially in the US where guns are readily available.

“The movement is growing and that’s evidenced by seeing it in different countries and hearing about different cases. The concern is that they will become emboldened and commit acts of violence,” she says.

“Because sovereigns truly believe in their ideas and if they feel very aggrieved by, you know, the government or whomever they think is oppressing them or controlling them… they can become emotionally involved.

“That emotional involvement sometimes leads to violence in some cases, or the belief that they have the power to attempt to overthrow a government in some capacity.”

Professor Christine Sarteschi, an expert in Sovereign Citizens at Chatham University, Pittsburgh
Image:
Professor Christine Sarteschi

Much of this seems to be based on an underlying and familiar frustration at the state of this country and of the world.

Mr Stone echoes some of the characteristic arguments also made by the right, that there is “two-tier policing”, that refugees arriving in the UK are “young men of fighting age”, that the government is using “forced immigration to destroy the country”.

Another SP member, retired investment banker David Hopgood, 61, says: “I firmly believe it is the true Englishman – and woman – of this country – that has the power to unlock this madness that’s happening in the West.

“We’ve got the Magna Carta – all these checks and balances. We just need to pack up, go down to Parliament and say: It’s time to dismiss you. You’re not fit for purpose.”

The members of the Sovereign Project are unfailingly patient and polite in explaining their understanding of the world.

But there is no doubt they hold a deeply radical view, one that is apparently growing in popularity.

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Wes Streeting ‘crossed the line’ by opposing assisted dying in public, says Labour peer Harriet Harman

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Wes Streeting 'crossed the line' by opposing assisted dying in public, says Labour peer Harriet Harman

Wes Streeting “crossed the line” by opposing assisted dying in public and the argument shouldn’t “come down to resources”, a Labour peer has said.

Speaking on Sky News’ Electoral Dysfunction podcast, Baroness Harriet Harman criticised the health secretary for revealing how he is going to vote on the matter when it comes before parliament later this month.

MPs are being given a free vote, meaning they can side with their conscience and not party lines, so the government is supposed to be staying neutral.

But Mr Streeting has made clear he will vote against legalising assisted dying, citing concerns end-of-life care is not good enough for people to make an informed choice, and that some could feel pressured into the decision to save the NHS money.

He has also ordered a review into the potential costs of changing the law, warning it could come at the expense of other NHS services if implemented.

Baroness Harman said Mr Streeting has “crossed the line in two ways”.

👉 Click here to listen to Electoral Dysfunction on your podcast app 👈

“He should not have said how he was going to vote, because that breaches neutrality and sends a signal,” she said.

“And secondly… he’s said the problem is that it will cost money to bring in an assisted dying measure, and therefore he will have to cut other services.

“But paradoxically, he also said it would be a slippery slope because people will be forced to bring about their own death in order to save the NHS money. Well, it can’t be doing both things.

“It can’t be both costing the NHS money and saving the NHS money.”

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Review into assisted dying costs

Baroness Harman said the argument “should not come down to resources” as it is a “huge moral issue” affecting “only a tiny number of people”.

She added that people should not mistake Mr Streeting for being “a kind of proxy for Keir Starmer”.

“The government is genuinely neutral and all of those backbenchers, they can vote whichever way they want,” she added.

Read more on this story:
‘Fix care before assisted dying legislation’
Why assisted dying is controversial – and where it’s already legal

Prime Minister Sir Keir Starmer has previously expressed support for assisted dying, but it is not clear how he intends to vote on the issue or if he will make his decision public ahead of time.

The cabinet has varying views on the topic, with the likes of Justice Secretary Shabana Mahmood siding with Mr Streeting in her opposition but Energy Secretary Ed Miliband being for it.

Britain's Secretary of State for Energy Security and Net Zero Ed Miliband walks on Downing Street on the day of the budget announcement, in London, Britain October 30, 2024. REUTERS/Maja Smiejkowska
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Energy Security and Net Zero Secretary Ed Miliband is said to support the bill. Pic: Reuters

Shabana Mahmood arrives 10 Downing Street.
Pic: Reuters
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Justice Secretary Shabana Mahmood has concerns. Pic: Reuters

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The Terminally Ill Adults (End of Life) Bill is being championed by Labour backbencher Kim Leadbeater, who wants to give people with six months left to live the choice to end their lives.

Under her proposals, two independent doctors must confirm a patient is eligible for assisted dying and a High Court judge must give their approval.

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Labour MP Kim Leadbeater discusses End of Life Bill

The bill will also include punishments of up to 14 years in prison for those who break the law, including coercing someone into ending their own life.

MPs will debate and vote on the legislation on 29 November, in what will be the first Commons vote on assisted dying since 2015, when the proposal was defeated.

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