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A “life-changing” new treatment for people living with sickle cell disease is to be made available on the NHS. 

Around 4,000 people living with the potentially fatal blood disorder could see their lives transformed by the drug Voxelotor.

Hazel Attua, 33, has been taking the medication for nearly two years. The former finance worker said the chronic pain forced her to quit her career.

She said: “One of the most significant changes I’ve experienced is in my energy levels. Previously, the exhaustion from sickle cell made it challenging to function, impacting my ability to work and enjoy time with loved ones. I wasn’t living the life of a 20-something by any means.

“Since starting Voxelotor, my energy has soared, making a massive change to my daily routine. This has not only improved my physical well-being but also my mental health.”

Sickle cell disorder causes red blood cells to take on a “sickle” shape, break and die early, which vastly reduces the amount of oxygen they can carry.

It leaves those affected with chronic anaemia and episodes of crippling pain, called crises, which can be life-threatening and frequently require hospital care.

Sickle cells and normal red blood cells. Pic: Dr Graham Beards/CCv3
Image:
Sickle cells and normal red blood cells. Pic: Dr Graham Beards/CCv3

The inherited condition also gives rise to a range of life-altering complications such as stroke, chronic fatigue, delayed growth, infections, progressive tissue and organ damage.

The drug works by helping haemoglobin – a protein in red blood cells – hold on to more oxygen and prevent red blood cells from becoming misshapen.

It was initially rejected for widespread NHS use but the National Institute for Health and Care Excellence (NICE) has approved the drug in final draft guidance after a reduction in its price.

New treatment will help bridge widening health inequalities

Sickle cell disease disproportionately affects Black African and Caribbean populations: a community that suffers discrimination in access to health care.

And for people from this community who live with the inherited blood disorder, that health inequality is compounded.

The disease needs constant medical attention – a sickle cell crisis causes crippling pain and requires emergency intervention.

But most A&E staff will not have knowledge of the condition.

One senior researcher found that the same clinical staff can make dangerous assumptions about the need to access pain-relieving drugs based on race.

Joni Jabbal from the King’s Fund warned: “Getting good care for sickle cell disorder is a postcode lottery.”

This substandard care can lead patients to stop accessing healthcare and fall out of the system.

Despite being the fastest-growing genetic condition in the UK, there has been only one licensed treatment for the disorder over the past twenty years.

In contrast, 511 drugs have been approved for cystic fibrosis since 1988. 

John James, chief executive of the Sickle Cell Society, said: “Today’s approval by NICE marks a significant milestone in sickle cell care, addressing decades of limited access to disease-modifying treatments.

“We look forward to this being the first in a series of new treatment options for people living with sickle cell disorder.”

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Helen Knight, director of medicines evaluation at NICE, said: “This is great news for people with sickle cell disease, particularly given the health inequalities experienced by people with the condition.”

The drug, which is taken as a once-a-day tablet, will be available straight away.

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Amanda Pritchard, chief executive of NHS England, said the service had “worked hard to make this life-changing treatment available”.

She added: “Sickle cell disease can have a huge impact on people’s lives, and this is one of the biggest breakthroughs in treatment in recent decades, so I know how much this announcement will mean for thousands of people across the country.”

Around 17,500 people are living with sickle cell disease in the UK and the condition is more common among people with an African or Caribbean family background. Of those 17,500, about 4,000 are believed to be eligible for the new treatment.

Voxelotor is also known as Oxbryta and is made by Pfizer.

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Andrew pays the ultimate price after years of public disdain

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Andrew pays the ultimate price after years of public disdain

Andrew always denied the allegations – but the repeated accusations would not go away.

And his associations risked real reputational damage to the Royal Family.

His friendship with convicted paedophile Jeffrey Epstein, his dealings with an alleged Chinese spy, and then the posthumous publication of his accuser, Virginia Giuffre’s memoir.

Her family said she brought down a British prince with her truth and extraordinary courage.

The piling pressure was starting to overshadow the work of Andrew’s wider family. And with the Prince of Wales soon heading to Brazil for his Earthshot award, enough was enough.

We understand the Royal Family, including Prince William backed the King’s leadership on this matter.

The King made the decisions, his family supported them.

More on Jeffrey Epstein

Both Andrew, and former secretary of state Peter Mandelson's public lives have been dismantled by their relationship with Jeffrey Epstein. Pic: PA
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Both Andrew, and former secretary of state Peter Mandelson’s public lives have been dismantled by their relationship with Jeffrey Epstein. Pic: PA

Andrew will leave Royal Lodge, his large home on the Windsor estate. His ex-wife, Sarah Ferguson, who also lived there, will “make her own arrangements”.

It was their family home for many years. Both daughters, Princess Beatrice and Princess Eugenie, who grew up there, will keep their titles.

Andrew's ex-wife has continued to live at the Royal Lodge estate but will now be left to make her own housing arrangements. Pic: PA
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Andrew’s ex-wife has continued to live at the Royal Lodge estate but will now be left to make her own housing arrangements. Pic: PA

As for Andrew, he will soon move to Sandringham – the King’s private Norfolk estate – where the family traditionally gathers for Christmas; and he will be funded privately by the King.

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Andrew allegations should be examined in ‘fullest ways’

This is all a formal process carried out in consultation with official authorities, but the government supports the decision taken.

This will not have been easy for the King, but he knew he could not ignore public opinion. The criticism and anger directed at Andrew was never going to stop – and only he had the power to take the ultimate action against his own brother.

For years, Andrew enjoyed the perks and privileges of his powerful position, but his birthright could not withstand withering public disdain.

And now he’s paid the ultimate price.

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Damning report into UK’s ‘complacent’ fast jets programme

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Damning report into UK's 'complacent' fast jets programme

Repeated delays to the UK’s multibillion-pound F-35 fast jet programme, because of a lack of cash, has increased costs and harmed the plane’s ability to fight, a report by MPs has said.

Exacerbating the problem, an “unacceptable” shortage of pilots and engineers is limiting how often the aircraft can fly, the Public Accounts Committee revealed.

It also raised questions about a major announcement by Sir Keir Starmer in June that the UK would purchase a variant of the aircraft that is able to carry American nuclear weapons, saying there did not appear to be a timeframe for when this capability would be operational nor an estimate of the additional price tag.

The strong criticism will likely make uncomfortable reading for Air Chief Marshal Sir Richard Knighton, Britain’s new military chief. He was previously the head of the Royal Air Force and before that the top military officer at the Ministry of Defence (MoD) in charge of capability.

The UK only has 37 out of a planned 138 F-35 jets in service – almost four decades since the programme, led by the US, was conceived and nearly a quarter of a century since Britain initially started paying tens of billions of pounds for it.

The aircraft are among the most advanced, stealthy and lethal jets on the planet, provided they have the right technology, weapons and – crucially – software updates.

A persistent squeeze on UK defence budgets, though, means military chiefs developed a bad habit of slowing down the F-35 procurement and scrimping on orders to save money in the short term – only for taxpayers to be hit with a much larger bill overall and for the RAF and the navy’s Fleet Air Arm to be left with jets that are unable to meet their full potential.

F-35B Lightning jets on the flight deck of the Royal Navy aircraft carrier HMS Prince of Wales. Pic: PA
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F-35B Lightning jets on the flight deck of the Royal Navy aircraft carrier HMS Prince of Wales. Pic: PA

The Public Accounts Committee laid bare the impact of this behaviour, highlighting five key issues:

One:

A short-term cost-saving decision by the MoD in 2021 to save £82m by delaying an investment in what is known as an Air Signature Assessment Facility – which is vital for the F-35’s stealth capabilities to fly undetected – will add an extra £16m when it is finally built in 2032.

More worryingly, this limits the UK’s ability to deploy the jets.

Two:

A cost-saving move to delay by six years building infrastructure for the naval squadron that operates the F-35 jets means the cost for that construction will almost treble to £154m from £56m.

Three:

A failure by the MoD to accurately update the total acquisition cost of the F-35s.

The department only this year said the whole-life cost until 2069 to acquire a total of 138 aircraft will be almost £57bn – up from £18.4bn for the first 48 jets out until 2048.

But even the new higher price tag was dismissed by the MPs as “unrealistic” – because it does not include additional costs such as fuel.

Four:

The current fleet of F-35B jets will not be armed with conventional missiles to hit targets on the land from a safe distance until the early 2030s.

This is a critical capability in modern warfare when operating against a country like Russia that has sophisticated air defence weapons that can blast jets in range out of the sky.

Five:

The military will claim its F-35B jump jets have met “full operating capability” by the end of the year – a timeline that is already years late – even though they do not have the long-range missiles and are blighted by other woes.

The report will make uncomfortable reading  for Defence Secretary John Healey (L) and Air Chief Marshal Sir Rich Knighton. Pic: PA
Image:
The report will make uncomfortable reading for Defence Secretary John Healey (L) and Air Chief Marshal Sir Rich Knighton. Pic: PA

A ‘leaky roof’ mistake

Sir Geoffrey Clifton-Brown MP, the committee chair, said: “Making short-term cost decisions is famously inadvisable if you’re a homeowner with a leaky roof, let alone if one is running a complex fighter jet programme – and yet such decisions have been rife in the management of the F-35.”

The UK’s existing F-35Bs are designed to fly off the Royal Navy’s two aircraft carriers.

The nuclear weapons-capable A-variant only operate off the land.

The MoD has said it will purchase an additional 15 F-35Bs and 12 of the As at an anticipated cost of £3.2bn.

However, there is no estimate yet of the cost to certify the F-35As to join a NATO mission, carrying American nuclear warheads.

Read more:
Can UK’s new air defence missile systems protect us?

The MPs said they were told work on becoming certified to operate with US nuclear weapons “is at an early stage and the department did not provide any indication of forecast costs”.

‘Very complacent’

The report flagged concerns about personnel shortages and how that impacted the availability of the few F-35s the UK does operate.

This included the need for an extra 168 engineers – a 20% increase in the current workforce and a shortfall that “will take several years to resolve”, the MPs said.

The report also highlighted 'substandard' accommodation at RAF Marham, home of the Lightning programme. Pic: PA
Image:
The report also highlighted ‘substandard’ accommodation at RAF Marham, home of the Lightning programme. Pic: PA

Making the recruitment and retention dilemma even worse is “substandard” accommodation at RAF Marham, which has been the home for the F-35 force since 2013. This has again been caused by budget shortfalls, meaning insufficient funds to invest in infrastructure.

The MoD said some upgrades would be completed by 2034. The Public Account Committee said this “is very complacent and should be given greater priority”.

An MoD spokesperson said: “Many of the decisions referenced in the report were taken under the previous government, and we have set out plans to tackle historic issues with procurement, infrastructure, recruitment, and skills through the Strategic Defence Review.”

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Highland protesters speak out as asylum seekers set for army barracks move

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Highland protesters speak out as asylum seekers set for army barracks move

“I’ll be at that gate with my kilt,” says Inverness protester Thomas.

He was one of the first people Sky News met as we visited the Highland city preparing to welcome 300 male asylum seekers at a 150-year-old army barracks just minutes from the High Street.

But if our experience testing the temperature is anything to go by, it seems the welcome will be far from the traditional hospitality this part of the world is famous for.

The Scottish Highlands currently has no asylum seekers, according to the latest Home Office data. It makes it a unique part of Britain as other communities witness rising numbers of arrivals.

The UK government is planning drastic changes in the coming weeks. It announced plans to bring 309 male asylum seekers to Cameron army barracks in Inverness.

The military base was built in 1876 and now looks set to become Britain’s most northern migrant centre as officials aim to cut the use of costly asylum seeker hotels.

An aerial view of the barracks being earmarked by the government
Image:
An aerial view of the barracks being earmarked by the government

Thomas, who did not want to share his full name, said he had signed a petition against the proposals and hinted he was ready to campaign against it.

He said: “I’ll be at that gate with my kilt on.

“I’ll be there with posters and shouting ‘get tae’. I think we are more scared. I think it’s more invasion.”

Fellow protester Chloe said: “Everyone is scared. I am worried for my child.”

She cited the recent conviction of migrant Deng Chol Majek, who stabbed hotel worker Rhiannon Whyte to death with a screwdriver in the West Midlands.

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Asylum seeker found guilty of murder

Another man, who did not want to provide his name, told Sky News he was previously homeless.

“It’s disgusting. It’s a shambles. I wouldn’t want to say what I’d do to them (migrants) but I wouldn’t be putting them in the barracks,” he told us.

He concluded: “We should ship them back to their own country. They don’t deserve to be in this country.”

‘Extreme views’

I also met offshore wind engineer Kai Fraser, who said: “I have no problem with them being here. There are a few people who have got really big problems with it which are unfounded. They need to go somewhere.

“It is peddled by Farage and his ilk. It is exposing quite a few folks’ extreme views that were traditionally hidden behind closed doors.”

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Since the announcement was made by the Home Office, it has emerged Cameron Barracks requires a £1m revamp, including new boilers and the possible removal of asbestos.

Contract tender documents seen by The Times suggested the work was due to begin in January, weeks after the asylum seekers were supposed to be moving in.

There are questions over whether the arrivals could be delayed over fears of a legal challenge from migrants over the conditions. Councillors in Inverness are set to meet in the coming days amid suggestions they could use planning laws to block the plans.

Swinney: It’s a mess

Scotland’s First Minister John Swinney said UK ministers, who are responsible for the asylum system, had made “another mess”.

He said: “What will be the availability of healthcare services? What will be the availability of support services? We have no answers to these questions. The Home Office has given no answers whatsoever.”

A Home Office spokesperson said:“We are furious at the level of illegal migrants and asylum hotels.

“This government will close every asylum hotel. Work is well underway, with more suitable sites being brought forward to ease pressure on communities.

“We are working closely with local authorities, property partners and across government so that we can accelerate delivery.”

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