Woman fell to death climbing in north Wales beauty spot

A social media influencer with more than 10,000 followers died plunging 65ft when she lost her grip climbing a rocky mountain face, an inquest heard.

Adventure-loving engineer Maria Eftimova, 28, was tackling the notorious Tryfan mountain in Snowdonia, North Wales, when the accident happened.

Maria was climbing with friends and trying to get a handhold when she tumbled – and went into “freefall” down the mountain.

Fellow climber Harry Jones said the group were going up the face one-by-one when he saw her fall.

He said: “I could see on one particular ledge Maria stopped in order to get a handhold. to pull herself up. I was six ft below her, to the left.

“She swung her right leg up to pull herself up. I asked ‘Got it well?’ and she said ‘I think so.” But he said moments later he was Maria “flying over me” and down the mountain.

Neil Oakes, who was on a slightly different route up the mountain told of his horror at seeing Maria’s fall.

He said: “I turned and saw Ms Eftimova tumbling through the air below me. She was already in freefall.

“I knew there was going to be an impact on the rocky outcrop below so I turned away for a split second. I was shouting ‘No, no, no, no.’

“When I turned back she was on the ledge below. I knew that it was serious. I said ‘She’s gone. She’s fallen’. I was in shock.

“The inquest heard she suffered severe head injuries including a fractured skull and despite help from paramedics she died at the scene.

Maria was the second professional woman to die in the mountain range in a week following the death of 30-year-old Dr Charlotte Crook.

Maria, of St Helens, but originally from Sofia, in Bulgaria, had more than 10,000 followers on social media where she showcased her outdoors lifestyle.

She was an experienced mountaineer and had recently completed an ice-climbing course in Norway. But the Caernarfon hearing was told she fell on the mountain’s notorious north ridge – a popular but dangerous scrambling route.

Coroner Kate Robertson returned a conclusion of accidental death and passed on her condolences to her family and friends.

She said: “It seems that Maria was scrambling with others when she has unintentionally and unexpectedly fallen and during the course of that fall she has sustained the injuries which have sadly led to her death.”

Friend Victoria Critchley, set up a fundraising page to help pay for repatriation costs, saying: “Maria was an ambitious, bright and cherished 28 year old, whose vibrant personality, energy and aura touched and uplifted all around her.

“She had a passion for engineering, having studied Civil Engineering at the University of Salford and a love for extreme sports. Her biggest passion being Snowboarding, which she was super excited for and looking forward to doing again on her upcoming trip to Austria.

“She had an insatiable thirst for life and exploring our world’s beauty. Tragically, she was taken from her family far, far, far too soon!”

Victoria said the fundraiser who help Maria’s devastated family. She said: “Adding to their immense grief, the family, who reside in Bulgaria, face a significant financial burden to repatriate Maria and give her the dignified farewell with her loved ones that she deserves.”

Friend Jem Elder wrote: “We will miss you everyday, forever Maria Eftimova. Your beautiful, uplifting spirt will always live on, you really were the very definition of loving life and living a happy, fulfilled life, inspiring others to follow in your footsteps. See you on the last climb.”

The tragedy on February 22nd came just six days after Dr Charlotte Crook also died while climbing in the same region.

An inquest heard Dr Crook plunged 30ft to her death while walking on Glyder Fach with a fellow medic. Both women were attended to by Ogwen Valley Mountain Rescue Organisation.

Speaking of Maria’s accident, the team said: “A group was ascending the north-ridge when one of them fell 20 metres into steep terrain.

“Passers-by with climbing equipment abseiled down and made her safe, and a team member already nearby made his way down and started CPR.

“Colleagues from Welsh Ambulance Service stood by at base while the Coastguard helicopter dropped team members onto the mountain.

“Unfortunately, the casualty had not survived her injuries, and she was brought down to Oggie base. The thoughts of all involved are with the casualties families and friends, thank you to all the members of the public who tried to help.”

History is repeating itself in my hometown. It’s terrifying to watch

Once, when I was a teenager, I was in a Spar in Ballymena when a man walked in and announced he would burn the shop to the ground if it didn’t close immediately.

My sister and I did not hesitate. Like everyone else, we believed him – and fled.

We had been intending to dash in to the store for just a few minutes to stock up on essentials, amid fears of a long few days ahead of us as rioting broke out across Northern Ireland in the 1990s over Drumcree.

So it’s terrifying to watch violence unfold in my hometown again, as we have over recent nights.

Around a 30-minute drive from Belfast, although it occasionally felt like further, Ballymena is often dubbed the buckle of the “bible belt” of Northern Ireland, surprising visitors with the number of churches that line its streets.

A DUP heartland, its MP was for many decades the firebrand preacher the Rev Ian Paisley, who used to secure huge parliamentary majorities, often winning one in every two votes cast.

Its status as a prosperous market town in the middle of Northern Ireland, its name literally means ‘middle town’, helped during the long years of the Troubles.

It is the home of Northern Ireland’s first Sainsbury’s, opened not long before the Good Friday Agreement, giving me a weekend bakery job – which occassionally included putting the jam in jam doughnuts – one of hundreds of jobs it brought to the town, as well as a company slogan “A fresh approach” that we hoped matched the times.

That prosperity is one of the reasons that the town attracted immigrants in the years after the peace process proved a lasting success – migrants who are now the subject of horrific violence.

In one video shared online, a woman tells the rioters: “Be careful, lads”, followed by a man telling her there were people living in one of the houses being attacked. She replied: “Aye, but are they local? If they’re local, they need out. If they’re not local, let them f****** stay there.”

Like everywhere in Northern Ireland, Ballymena has suffered its share of atrocities in the past.

In 2006 a 15-year-old Catholic boy was beaten to death in an attack that started outside the local cinema, not all that far from where the latest riots erupted this week.

The Harryville part of the town, where hundreds of people gathered this week, was the scene of loyalist protests for years against the presence of a Catholic church in a strongly Protestant area in the late 1990s.

In December 1996, a 300-strong contingent of police in riot gear was needed to ensure local people were able to attend Mass, as an article for The Independent recorded at the time.

And, of course, violence erupted over Drumcree, a long-running conflict about a Protestant Orange Order march in Portadown.

After the incident in the Spar, my family stayed home for days, watching events unfold on the news, part of an unofficial night-time curfew that saw thousands of people lock themselves down decades before any of us had ever heard of Covid.

On a separate summer I spent a mini-break in Brussels – won, bizarrely, as part of my school’s quiz team – holed up in a hotel room with three fellow pupils, watching helplessly on CNN as riots erupted at home.

When we landed back in Belfast International airport late at night, the violence had become so widespread we faced a difficult and potentially treacherous journey getting home. At one point we were stopped by police just as our car came face to face with an overturned and burnt out bus.

That was in 1998, when the riots did not stop until the appalling murders of three young brothers in a loyalist arson attack in Ballymoney, about 20 miles from Ballymena.

Hopefully it will not take a tragedy like that for the violence to end this time.

Tax hikes will come if economy shrinks any further, IFS warns

The Institute for Fiscal Studies has warned Rachel Reeves that any more bad economic news will “almost certainly” spark fresh tax rises.

Council tax will already have to rise at its fastest rate in a generation, the IFS said, as it added to concerns the chancellor has left herself with little room for manoeuvre a day after she unveiled her spending plans for the rest of the parliament.

The warning came as the government was hit with the news that the economy had shrunk by 0.3 per cent, sparking fears of a potential recession.

Ms Reeves came into office with a pledge to grow the economy, but it has been sluggish at best in her first year.

Paul Johnson, director of the IFS, said council tax is set to rise at its fastest rate for 20 years as local government tries to close its funding gaps with annual increases of up to 5 per cent. More councils could also reach a “tipping point” unless demands on their resources fall, he warned.

Mr Johnson also raised the spectre of many more people being forced to pay higher rates of income tax, under so-called “fiscal drag”, where the threshold at which workers begin to pay more stays frozen even as wages rise with inflation.

Mr Johnson described this as “the most politically straightforward thing to do” and said it would bring in about £10bn a year by 2029.

In response, government sources did not deny they could extend a freeze on thresholds, saying only that future tax and spend decisions are taken at the Budget.

In a scathing assessment, he suggested that the Treasury was at times “making up the numbers” and described Ms Reeves’s speech to the Commons on Wednesday as “baffling”.

But he said that the chancellor’s priorities were “reasonable” and conceded that she was dealing with difficult economic circumstances.

Mr Johnson also noted that the spending review did not represent austerity as some of Ms Reeves’s critics in the Labour Party have claimed.

There were also concerns that the cost of Labour’s flagship free childcare promises will cost a whopping £1bn more than originally planned by 2029, because of higher than expected take up.

In his conclusions, Mr Johnson said: “If you were baffled by the chancellor’s speech yesterday [Wednesday], so were we. It did not appear to be a serious effort to provide any useful information to anybody.”

He said the “real test” would be in how well the money is spent, especially funding in investment.

And he warned: “Ms Reeves is now going to have all her fingers and all her toes crossed, hoping that the OBR will not be downgrading their forecasts in the autumn. With spending plans set, and ‘ironclad’ fiscal rules being met by gnat’s whisker, any move in the wrong direction will almost certainly spark more tax rises.”

Asked if the UK’s finances were doomed because of high spending on health and pensions, he said “no”, although he added he was worried about the longer-term trend of not having children.

The IFS also cast doubt on Labour’s much-vaunted defence spending aims, saying they would have expected higher increases going forward if Sir Keir Starmer’s 3 per cent “ambition” was “concrete”.

And it said there was “uncertainty about how asylum costs will fall in reality” after Ms Reeves announced huge savings by ending the use of hotels, an aim that has defeated successive governments.

Trump maintains control of California National Guard for now after court ruling

A US appeals court allowed president Donald Trump to temporarily maintain the National Guard deployed in Los Angeles, soon after a federal judge had ordered him to return control of the troops to California governor Gavin Newsom.

The decision by the 9th US Circuit Court of Appeals paused a lower court ruling blocking the mobilisation of the National Guard by Trump.

Judge Charles R Breyer had ruled on Thursday that Trump’s actions were “illegal” and “he must therefore return control of the California National Guard to the Governor of the State of California forthwith”.

The appeals court paused Mr Breyer’s ruling.

California senator Alex Padilla was forcibly removed from a press conference being held by homeland security secretary Kristi Noem on Thursday when he attempted to question her on the Trump administration’s response to unrest in LA.

Some 700 Marines deployed to the city were expected to support up to 4,000 National Guard troops to protect ICE agents conducting immigration raids from Friday.

This plan had been in limbo after Trump was ordered to return the troops to Newsom.

Meanwhile, protests have flared up in at least 37 cities since last Friday, The Independent found.

Has Gavin Newsom got what it takes to challenge Trump?

Sixty years is a very, very long time in fast-moving US politics. But that is how long ago it is since a US president ordered the national guard into a state without a request from the state governor.

The line between federal and state-level law enforcement is one of the many very clear demarcations of authority in the US federal system. It is another hallowed line that Donald Trump has crossed. From a purely public order standpoint, Trump’s dispatch to Los Angeles of a 4,000-strong contingent from the national guard, bolstered by 700 US marines, appears to be having the intended effect.

The violent protests that erupted in response to the efforts of Immigration and Customs Enforcement (ICE) agents to detain and deport people with no legal right to be in the United States have died down. Order has mostly been restored, and thousands are under arrest – whether for immigration violations, for violence, or for defying the city-imposed curfew.

Smaller protests that subsequently broke out in other cities also appear to have been discouraged by Trump’s characteristically unsubtle – and constitutionally contestable – application of presidential power. If the short-term effect looks close to being an unqualified success from the perspective of the White House and Trump’s political base, there has to be a question, indeed several questions, about the longer term.

How likely is it that the president’s actions are storing up liabilities, either for him or his political heirs? One immediate effect has undoubtedly been to propel California’s governor, Gavin Newsom, into the limelight again as a leader of the state-level opposition to Trump, as he became in Trump’s first term. And it has to be said that the Democrats are in sore need of such leadership.

Far from being energised by Kamala Harris’s defeat, to refresh their party and rally around a new leader, Democrats have seemed at a complete loss as to how to combat the second-term Trump.

Could the Democrats now find a new champion in Gavin Newsom – and is he equal to the task? Might he even be able to exploit his stand-off with Trump to become a plausible presidential contender for 2028? He certainly seems up for the challenge.

Having said after Trump’s victory – to the distress of some supporters – that he would work with the second-term president, Newsom has come out fighting over the ICE raids on illegal migrants and has threatened to sue through the courts over the deployment of the national guard. And whereas the last time the national guard was sent into a state without the governor’s say-so – to protect civil rights protesters in Alabama – there was an element of covert politicking, there is nothing of that this time around.

An argument can – and doubtless will – be made that immigration enforcement is a federal responsibility; that the ICE agents met violent resistance and that they required protection that the city of Los Angeles and the state of California either would not (or could not) give. Whether that justifies federal intervention, however, is a matter that may well be decided in court.

So long as the national guard operate within their lawful parameters, which appears to be the case – and so long as the marines are not used to keep civil order, but only to protect the national guard – there may be no case for Trump to answer.

What’s more, however much Trump’s opponents might like to present him as riding roughshod over states’ rights to assert federal control, this is not entirely true either. The Supreme Court’s overturning of Roe v Wade on abortion rights, which was lauded by Trump, was as much of a reassertion of states’ rights as a rolling back of the rights of women.

A win on the issue of states’ rights would undoubtedly project Newsom on to the national stage. Even then there could still be a question about his prospects of rising to lead a coherent Democratic Party opposition to Trump more broadly. Yes, he was a contender to become Kamala Harris’s running mate – had an all-California ticket not been judged a potential liability (which, of course, it was). Yes, he became a thorn in the side of the first-term Trump on a host of issues. And yes, Ronald Reagan made the governorship of California a stepping stone to the presidency. But that might not be enough.

Newsom has provoked vocal opposition within his own majority Democrat state, and there is little doubt that Trump would be up for a fierce rhetorical and political fight in defence of his programme. He has shown little but contempt for Newsom hitherto, whom he sees as left, liberal and weak, with an insatiable appetite for high taxes. He is to the great detriment, as he sees it, of California’s wellbeing (a one-person equivalent, in a way, of Trump’s other object of hatred, the EU). Many of Trump’s loyal base will be of like mind.

Then again, even if Newsom were to emerge as a politician capable of arguing the Democrat cause on the national stage, there are compelling reasons why this particular stand-off might not work in his favour in the bigger scheme of things.

The problem for Newsom is that, even as Trump has been losing support nationally on other issues, support remains strong for his tough stance on migration. Appearing to support illegal aliens to remain in the US is probably not a hill Democrats will want to die on, either now, in the run-up to next year’s midterm congressional elections, or in 2028.

Trump may also be less vulnerable than many previous presidents to party political opposition. There is some new talk of impeachment (already), but he saw off two attempts before, and anyway, electorally, as a second-term president, he has little to lose, for all the loose talk he might try to change the constitution to make possible a third term.

The awkward reality is that Republicans running for office are more dependent on him, than he is on them. Added to which, Trump is not a party creature. He is a one-off deal-maker turned president, who is testing constitutional power to its limits.

His Republican badge is a flag of convenience, required by the political system. Traditional Republicans may be counting the days until their party can nominate a real, more predictable, Republican for the highest office.

In the meantime, their political fortunes are tied to his, and his sights are set on what he will bequeath, which includes a country with fewer illegal migrants, where America – in his definition – comes first. Gavin Newsom may have a national future; but he might do well to rein in his fury and bide his time.

The E2E Tech 100 Track 2025 revealed

The E2E Tech 100 is a celebration of the UK’s most dynamic and fast-growing technology businesses. These companies are redefining the future through innovation, digital transformation, and remarkable revenue growth, with artificial intelligence playing a central role in many of their business models.

Our headline partner for the E2E 100 2025 is Universal Partners.

The Tech 100 showcases groundbreaking tech companies, each surpassing £10 million in turnover over past 2 years, and setting new standards for innovation and growth across the tech sector.

Featured in the track and demonstrating extraordinary growth are:

Revolut Ltd – One of the world’s fastest-growing fintech super-apps, Revolut has revolutionised the way millions manage their finances. With services spanning banking, crypto, stock trading, and travel insurance, the company has scaled across continents under the leadership of CEO and Co-Founder Nikolay Storonsky. Now serving over 40 million users globally, Revolut’s seamless digital-first approach has set a new benchmark for financial innovation.

Cleo AI Ltd – At the cutting edge of artificial intelligence in personal finance, Cleo is reshaping how Gen Z manages money. Founded by Barney Hussey-Yeo, Cleo combines humour, data, and conversational AI to make budgeting and saving both intuitive and engaging. With tens of millions of interactions every month and strong traction in the US market, Cleo has emerged as a disruptive force in fintech.

Zilch Technology Limited is a leading UK-based buy-now-pay-later (BNPL) fintech company revolutionising consumer spending with a transparent, interest-free model. Founded by Philip Belamant, Zilch combines open banking and AI to offer smarter, responsible credit to over 3 million users. With a rapidly growing presence in both the UK and US markets, Zilch is redefining flexible payments for the digital age.

This initiative stands as a compelling testament to the UK’s thriving tech ecosystem, showcasing companies that not only drive significant revenue growth but also foster digital inclusion, enhance user experience, and shape global tech trends.

With founders from across the country, the E2E Tech 100 demonstrates the depth and diversity of talent in the UK, spotlighting entrepreneurs who are leading change through creativity, data, and purpose in an increasingly tech-driven world.

As the Founder and CEO of E2E said: “The E2E Tech 100 track recognises the exceptional achievements of technology companies that are scaling with speed, vision, and impact. From AI-driven solutions to inclusive fintech platforms, these businesses are solving real-world problems and transforming industries. It’s an honour to celebrate their growth, resilience, and leadership as they navigate and shape a digital-first future.”

Andrew Morley, CRO at The Independent, added: “We are delighted to partner with E2E in celebrating the UK’s top 100 tech innovators. These businesses embody what’s best about British entrepreneurship: bold thinking, digital excellence, and global ambition. Their stories inspire and remind us of the extraordinary potential within the UK tech landscape. Congratulations to all those featured in this year’s Tech 100.”

The track was carefully curated using trusted data from Experian and Creditsafe, ensuring only the most impactful and high-performing businesses have been recognised in this track.

Each E2E 100 track is supported by our partners: Universal Partners (Headline Partner), Fora, Lioncroft, Creditsafe, OakNorth, and Experian.

With London Tech Week underway, it’s an exciting time to spotlight innovation and entrepreneurship across the UK. As the nation celebrates tech talent, the E2E Tech 100 recognises the businesses driving real impact and growth.

For more information and to see the full E2E Tech 100 2025 track, click here.

To find out more about E2E, visit https://www.e2exchange.com/

Groundbreaking treatment that attacks cancer cells to be given on NHS

Blood cancer patients in England are set to be among the first in the world to access a pioneering “Trojan horse” treatment, health officials have announced.

The targeted therapy, belantamab mafodotin, also known as Blenrep, has shown promising results in halting the progression of myeloma for nearly three times as long as current treatments, according to studies.

Approximately 1,500 patients annually with multiple myeloma, an incurable bone marrow cancer, are expected to benefit from this new treatment.

The National Institute for Health and Care Excellence (Nice) has approved Blenrep, manufactured by GlaxoSmithKline, for use within the NHS.

NHS England has confirmed that it will be the first health system worldwide to roll out the treatment.

The drug will be available to patients whose cancer has advanced or has not responded to initial treatments. Administered as an infusion every three weeks alongside other cancer drugs, this antibody drug targets and attaches to cancer cells.

It has been dubbed a “Trojan horse” treatment because it works by being taken into a cancer cell, before releasing a high concentration of a lethal molecule to destroy the cell from inside.

“Myeloma is an aggressive type of blood cancer, but we have seen a steady improvement in the outlook for patients over recent years as we have introduced new targeted therapies,” Professor Peter Johnson, NHS England’s national clinical director for cancer, said.

“I am delighted that patients in England will be the first to benefit from this new treatment, which has the potential to keep cancer at bay for years longer, giving people the chance of more precious time with friends and family.

“This treatment could be life-changing for many patients and their families, and that’s why it is so important that the NHS continues to secure quick access to the latest, innovative treatments like this, at affordable prices to the taxpayer.”

Helen Knight, director of medicines evaluation at Nice, said: ”We’re delighted that people in the UK will become among the first in the world to access belantamab mafodotin for this indication.

“This recommendation demonstrates our commitment to getting the best care to patients fast, while ensuring value for the taxpayer.”

Trials have suggested that the treatment, in combination with bortezomib and dexamethasone, delayed progression of the disease by an average of three years, compared to just over a year for patients taking commonly-used drug daratumumab along with the other treatments.

Patient Paul Silvester, 60, from Sheffield, was diagnosed with myeloma in July 2023 and received treatment at the Royal Hallamshire Hospital.

The first treatment he was given failed to stop his cancer from progressing so he was given belantamab mafodotin through an early access programme.

“I feel like this treatment has brought the party balloons back in the house. It has been amazing – within the first two or three weeks, after the first dose, I was in remission,” he said.

“It gives me quite a lot of confidence in the drugs and it makes me more optimistic about the future.

“I’ve been feeling well and I’m still quite active – that’s what’s important in terms of your quality of life.

“One of my daughters is graduating from university in October and it’s a goal for me to be there.”

Shelagh McKinlay, director of research and advocacy at blood cancer charity Myeloma UK, said: “It’s fantastic to see the UK at the forefront of myeloma treatment.

“We have been working very hard for the last year to get this treatment approved and we know it will transform the lives of thousands of people with myeloma.”

Health Minister Karin Smyth said: “This groundbreaking therapy puts the NHS at the forefront of cancer innovation.

“By harnessing cutting-edge ‘trojan horse’ technology, we’re offering new hope to blood cancer patients across the country.”

Parents of twins with same illness describe ‘nightmare’ NHS battle

Parents of twins who share a rare illness that could affect the ability to walk have described the “nightmare” battle they face with the NHS to access a free drug.

Givinostat, a medicine that can slow the progression of Duchenne muscular dystrophy, is being offered at no cost by a drug firm while it awaits NHS approval. The drug can prolong the time children with the condition can walk.

However, despite being part of an early access programme since November, only a limited number of NHS trusts across the UK, particularly in England, are providing the medication.

Duchenne UK, a charity supporting those affected by the condition, has described the situation as a “cruel” postcode lottery, with families in a race against time to secure access to the drug.

The charity is helping families in their fight for givinostat, including Rosie and Pete Day, and their 10-year-old son Jasper, from Horsham, West Sussex.

The Day family have twins Jasper and Arabella, aged 10, and two older daughters. While both Jasper and Arabella have Duchenne, with Arabella a carrier of the genetic disorder and Jasper the most affected, the condition mostly affects boys.

The drug, developed by ITF Pharma UK, is only being given under the early access programme to children who are still able to walk.

Some NHS trusts are reportedly refusing to supply the drug, while others are delaying its provision by creating prioritisation lists.

The trusts cite the cost of monitoring the drug, approximately £1,900 per patient per year, as a barrier, stating that these expenses must be covered from their existing budgets.

In a desperate attempt to expedite access, parents have met with Health Secretary Wes Streeting. However, the government maintains that the decision to provide the drug rests with individual NHS trusts.

Mrs Day said: “We try and live in the moment and, in this moment, there’s an opportunity to make a massive change to Jasper.

“We’re not going to cure it, but this drug gives him the best chance of having the early life that he wants to have and what every parent wants to give their child.

“It’s so close – and yet we’re stuck.

“We’re stuck in this process where there’s something in reaching distance that could make a huge difference to keep him walking, keep him active, keep him with his siblings in the garden, keep him walking up the stairs, all of those things, and it just feels that we can’t quite get there.

“We’re on the finishing line to get something that will make a difference and we can’t quite get there because of the system we’re in.

“The drug is not going to cure it, but it will give him the childhood you would wish to give your child – to keep them playing football, coming on dog walks, being able to walk up the stairs, playing the French horn, all of those things that you dream your child is going to get to do.

“We can’t give it because it we’re stuck, even though it’s free and it’s there – we can’t give it.

“It feels like a nightmare, because you know that the doctors want to give it, but when it comes to getting the drug in his mouth and seeing what it would do, we’re stuck.

“It’s a lottery, basically, depending on where you are in the country … and within NHS trusts themselves.”

Jasper is under the care of the Evelina London Children’s Hospital, which is only now starting to contact patients and is drawing up a priority list for who gets the drug first.

According to Duchene UK, boys whose condition is getting worse risk falling off the list entirely while waiting for the drug.

Around 500 boys in the UK are eligible for givinostat, which can be taken at home like Calpol, with hospitals then doing follow-up blood tests of around eight in the first year, followed by twice a year thereafter.

Children may also need an ECG, though these are already part of routine Duchenne monitoring.

Emily Reuben and Alex Johnson, founders of Duchenne UK, said: “As time ticks by, more boys are losing out on their chance to access givinostat.

“This is a simple treatment, which can be easily managed at home, and requires uncomplicated blood tests to monitor. It’s free to the NHS and could offer real hope for patients and their families.

“The delays are cruel and the postcode lottery is unjustifiable. We are calling on the NHS to urgently make this available to both ambulant (walking) and non-ambulant boys.”

To date, all health boards in Scotland are rolling out the drug, alongside those in Swansea and Cardiff.

Leicester Royal Infirmary was the first trust in England to give the drug, but the Evelina has not yet, and neither have trusts in Manchester, Liverpool and Newcastle.

Great Ormond Street Hospital is working to supply the drug.

A spokesman for the Evelina said: “We have begun contacting families of all existing Evelina London patients who may be eligible for givinostat and are working to set up appointments in the next few months.

“Our clinical team are working through our patient lists and are currently prioritising children who need the treatment most urgently, or are at a higher risk of losing movement (ambulation) soon.”

An NHS spokesman said: “The first National Institute for Health and Care Excellence (Nice) committee meeting to consider this treatment is scheduled to be held in July 2025, and if manufacturer ITF Pharma can offer a cost-effective price to enable Nice to recommend its use, the NHS will be ready to work with the company to explore fast-tracking access for patients.

“NHS England has published guidance on manufacturer-led early access schemes, which require trusts to cover substantial costs and find additional clinical resources to administer new treatments, and we understand a number of trusts across the country are preparing to offer givinostat via such a scheme.”