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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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Former England rugby captain Lewis Moody reveals motor neurone disease diagnosis

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Former England rugby captain Lewis Moody reveals motor neurone disease diagnosis

England’s 2003 Rugby World Cup winner Lewis Moody has been diagnosed with motor neurone disease.

The 47-year-old former England captain said it had been “incredibly hard to process and a huge shock to me and my family”.

In a social media post, he wrote: “I’m writing to share some tough news. I have recently been diagnosed with ALS, also known as Motor Neurone Disease (MND).”

He said: “I feel fit and well in myself and I’m focused on staying positive, living life and dealing with the changes I will experience as they come.

“I am being well supported by my family, friends and medical professionals and I’m truly grateful to those who, in their time, helped progress research to support others, like me, living with this disease.

England's Lewis Moody (R) tackles Robert Sidoli from Wales during a Rugby World Cup quarter-final in 2003. Pic: Reuters
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England’s Lewis Moody (R) tackles Robert Sidoli from Wales during a Rugby World Cup quarter-final in 2003. Pic: Reuters

Lewis Moody, fourth from right in the middle row, poses with Queen Elizabeth II after winning the 2003 World Cup. Pic: Reuters
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Lewis Moody, fourth from right in the middle row, poses with Queen Elizabeth II after winning the 2003 World Cup. Pic: Reuters

Since retiring from the sport in 2012, Moody and his wife, Annie, have dedicated much of their time to fundraising for The Lewis Moody Foundation, which supports those affected by brain tumours.

“My plan is to continue with this, but to also create an opportunity to support a charity closer to my current situation,” said Moody, who was awarded an MBE for services to rugby in 2004.

“I would be so grateful for your help with this and look forward to sharing more, once I am clear on what this looks like.”

Rugby players could be prone to motor neurone disease – but causes still unknown

Fellow rugby players Doddie Weir and Rob Burrow have died from the disease in recent years.

The sport – and in particular England skills coach Kevin Sinfield – have worked on high-profile fundraising campaigns to tackle it.

Athletes appear to be disproportionately likely to contract MND, which causes muscle weakness to the point it can eventually be hard to eat or breathe.

Credit: Action Images / Paul Harding Livepic via Reuters
Image:
Credit: Action Images / Paul Harding Livepic via Reuters

Research from Durham University found rugby players could be especially prone, as those who have suffered multiple concussions have higher levels of certain proteins in their blood that are linked to the disease.

But the exact cause of it remains unknown.

Read more: ‘Game changer’ test could spot motor neurone disease

“For now, please know I feel your love and support,” Moody added.

“All I ask is that I am given some space to navigate this with my wife and sons, and those closest to us – but without doubt, I will continue to embrace life and grasp opportunities in the same way I always have.”

What is motor neurone disease?

Motor neurone disease (MND) causes muscle weakness that gets worse over the course of months or years.

It’s usually life-shortening and there’s currently no cure, but treatments have been developmed to help manage the symptoms.

Initial symptoms can be: stiff or weak hands, weak legs and feet and twitches, spasms or muscle cramps.

They can worsen into problems breathing, swallowing and speaking, changes to personality and mood and being unable to walk or move.

It affects around one in 300 people.

A handful of studies have shown a correlation between professional sports to MND, but do not prove a cause.

A ‘glittering career’

Moody won 71 caps for England and also five for the British and Irish Lions, and was a seven-time title winner with Leicester.

He is perhaps best known for winning the final lineout during the 2003 World Cup final, which led to Jonny Wilkinson’s historic match-winning drop goal.

Lions Rugby Chair Ieuan Evans MBE said: “We are all greatly saddened to hear the news of Lewis Moody’s diagnosis.”

He added: “As a player, Lewis inspired so many fans during a glittering career.”

Moody joined Leicester Tigers from Oakham School and made 223 appearances between 1996 and 2010.

The club said everyone there was “deeply saddened to learn that one of our greatest players” had been diagnosed with MND.

“The figures, trophies and awards tell you what an incredible player Lewis was, but that is only half the story,” said Tigers chief executive Andrea Pinchen.

“As an individual, his commitment to his club along with his warmth and passion shone through, which endeared him to teammates, staff and supporters alike.”

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Major shake-up of home buying aims to make process cheaper, quicker and easier

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Major shake-up of home buying aims to make process cheaper, quicker and easier

A shake-up to the house-buying system which could cut a month off the time it takes – and slash around £700 from the moving bill – is on the table.

Changes could include requiring property sellers and estate agents to provide more information when a home is listed for sale, reducing the need for buyers to carry out searches and surveys.

Binding contracts could also be introduced at an earlier stage, reducing the risk of a chain collapsing.

The proposals could also deliver clearer information to consumers about estate agents and conveyancers, including their track record and expertise, along with new mandatory qualifications and a code of practice to drive up standards.

Housing Secretary Steve Reed said the proposals, which are the subject of a consultation, would help make “a simple dream, a simple reality”.

The government says it will set out a full roadmap in the new year after consulting on its proposals.

Housing Secretary Steve Reed. Pic: PA
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Housing Secretary Steve Reed. Pic: PA

Mr Reed said: “Buying a home should be a dream, not a nightmare.

More on Housing

“Our reforms will fix the broken system so hardworking people can focus on the next chapter of their lives.”

Officials believe the proposed package of reforms could cut around a month off the time it takes to buy a new home and save first-time buyers an average of £710.

People selling a home could face increased costs of around £310 due to the inclusion of upfront assessments and surveys.

Those in the middle of a chain would potentially gain a net saving of £400 as a result of the increased costs from selling being outweighed by lower buying expenses.

Wider use of online processes, including digital ID, could help make transactions smoother, the government argued, pointing to the Finnish digital real estate system which can see the process completed in around two weeks.

The consultation also draws on other jurisdictions, including the Scottish system where there is more upfront information and earlier binding contracts.

‘Process the same as for our grandparents’

The planned shake-up was welcomed by property websites and lenders.

Rightmove chief executive Johan Svanstrom said: “The home-moving process involves many fragmented parts, and there’s simply too much uncertainty and costs along the way.

Looking for the perfect home on Rightmove. File pic: PA
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Looking for the perfect home on Rightmove. File pic: PA

“Speed, connected data and stakeholder simplicity should be key goals. We believe it’s important to listen to agents as the experts for what practical changes will be most effective, and we look forward to working with the government on this effort to improve the buying and selling process.”

Santander’s head of homes David Morris said: “At a time when technology has changed many processes in our lives, it is incredible that the process of buying a home – an activity that is a cornerstone of our economy – remains much the same for today’s buyers as it did for their grandparents.”

Conservative shadow housing minister Paul Holmes said that while Labour welcomed steps to digitise and speed up the process, the party risked “reinventing the last Labour government’s failed Home Information Packs – which reduced the number of homes put on sale, and duplicated costs across buyers and sellers”.

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Shadow chancellor to pledge further cuts to foreign aid – as Tories vow to ‘stand up for fiscal responsibility’

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Shadow chancellor to pledge further cuts to foreign aid - as Tories vow to 'stand up for fiscal responsibility'

The Tories will pledge to make even further cuts to the foreign aid budget, as the party attempts to regain its reputation for fiscal responsibility in the wake of the Truss mini-budget.

Shadow chancellor Sir Mel Stride will unveil plans to cut overseas development aid to 0.1% of Gross National Income (GNI), down from the current 0.3%, cementing a sea change in the Conservative Party’s position on international aid.

In his keynote speech to the party conference in Manchester, Sir Mel will claim that his plans can save £47bn over the next parliament, which include cuts to welfare, the civil service, and green subsidies.

In the wake of the Truss mini-budget that saw the pound fall and interest rates soar, the senior MP will say that his party will “never, ever make fiscal commitments without spelling out exactly how they will be paid for”, and commit to fiscal responsibility.

A key part of Sir Mel’s plans to demonstrate that is to reduce foreign aid to 0.1% of GNI, or around £3bn per year – down from spending of an estimated £9.4bn in 2028-29.

The Boris Johnson government reduced aid spending to 0.5% of GNI in 2021, in order to pay for the vast public spending during the pandemic. Sir Keir Starmer announced a further cut to 0.3% of GNI earlier this year to pay for the increase in defence spending.

Bond, the network for organisations working in international development and humanitarian assistance, has hit out at the announcement, describing it as “reckless, short-sighted, and morally indefensible”.

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Its chief executive, Romilly Greenhill, told Conservatives at a fringe event at the Tory Party conference on Sunday: “Let’s just be really clear, such a policy would negatively impact millions of people around the world.

“It would harm deeply vital programmes being made in reducing, eradicating, killer diseases, and it would also severely undermine our ability to respond to devastating global crises.”

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Does it matter that foreign aid has been cut in the UK?

But the Tories say they “cannot justify taxing people in this country to pay for billions of spending abroad”, and it marks the death-knell of Tory former prime minister David Cameron’s target of spending 0.7% of GNI on aid, announced in 2011.

Welfare, green subsidies, and asylum hotels to face the chop

Another key area where Sir Mel will pledge to make savings will be the welfare system, where they claim £23bn can be cut.

He will say that narrowing the eligibility for sickness benefits, stopping claims from people with “low-level mental health problems” who could be treated instead, limiting the VAT subsidy for Motability, and reforming job-seeking obligations are key areas where savings can be made.

But a major change will be restricting welfare to British citizens – bringing Tory party policy in line with Reform UK.

But he will vow to reverse any decision from the current Labour government to lift the two-child benefit cap, which stands in contrast with Nigel Farage’s party that wants to lift it.

Sir Mel is expected to say the reforms are essential not just for balancing the books, but for tackling the deeper social damage caused by long-term dependency.

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Tories would quit European Convention on Human Rights

Another key target of the shadow chancellor is the civil service, where he will argue that £8bn in savings can be made by reducing the headcount from 517,000 down to 2016 levels of 384,000.

Scrapping the Climate Change Act and “costly and ineffective green subsidies being pushed by Ed Miliband” is also on Sir Mel’s agenda. The Tories say there are savings of £1.6bn a year to be made in this area.

And closing all asylum hotels will save at least £3.5bn, the Tories say – at least £1.6bn of which they have already allocated to their new ICE-style “removals force”, to detain and remove 150,000 illegal migrants per year.

In his speech, Sir Mel Stride MP is expected to say: “The Conservative Party will never, ever make fiscal commitments without spelling out exactly how they will be paid for.

“We’re the only party that gets it. The only party that will stand up for fiscal responsibility. We must get on top of government spending.

“We cannot deliver stability unless we live within our means. No more pretending we can keep spending money we simply do not have.”

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Is the Tory party a ‘distressed asset’?

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‘Trussonomics is still in full swing’

But Labour Party chair Anna Turley said: “The Tories let welfare bills, civil service numbers and asylum hotel use skyrocket on their watch – and they’ve never apologised. Now they want to rehash failed promises from their failed manifesto to try to solve the problems they caused.

“This is the same old Tories, with the same old policies. They didn’t work then and you can’t trust them now.”

And Liberal Democrat Treasury spokeswoman Daisy Cooper said it was “clear the Conservative Party learnt absolutely nothing from their disastrous handling of the economy, which left families struggling with a cost-of-living crisis and public services on their knees”.

She added: “Cutting vital support to bring household bills down, trying to balance the books on the backs of people with mental health conditions and slashing the UK’s soft power abroad through aid budget cuts shows Trussonomics is still in full swing.”

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