Sir Roger, who has died aged 83, was a the last chair of the Welsh Development Agency and a great champion for Wales

One of Wales’ most respected entrepreneurs and last chairman of the Welsh Development Agency, Sir Roger Jones, has died aged 83.

Born into a Welsh first language household in Corwen, the second son of parents Richard and Gwladys, he attended Bala Boys’ Grammar School and later the Welsh School of Pharmacy in Cardiff, before beginning his career with the Wellcome Foundation, where he held senior roles in Africa, the Middle East and Eastern Europe.

He later founded Penn Pharmaceuticals, which relocated to Tredegar in the 1980s, before he exited after it was acquired in a management buyout.

Sir Roger, who lived in Battle, Powys, was a larger than life character with a warmth and great sense of humour. At business events he worked the room with aplomb, often with a fine glass of red in hand.

He was a passionate Welshman and advocate for the language, and took every opportunity when on business internationally to promote Wales as a potential investment location. His entrepreneurial spirit, like that of so many naturally born wealth creators, was not driven by any thought of monetary gain, but by the excitement and adrenaline of starting new businesses.

As a philanthropist he gave to many good causes, including cancer charity Maggie’s.

While at heart an entrepreneur, in public life he had astute political antennae. He remained though a refreshingly straight talker, although often with a disarming smile. His language could be visually descriptive. When discussing a role for a well-known entrepreneur with the Welsh Government he told me: “He will be like a fox in a chicken coop.” His passion for learning and promoting opportunities, particularly for young people, saw him chairing training organisation Gwent TEC and later TEC Southeast Wales.

In 2002, he was appointed chairman of the Welsh Development Agency, only for, two years into his three-year term, then First Minister Rhodri Morgan to decide to bring the WDA into the Welsh Government in 2004.

Its then chief executive, Graham Hawker, dramatically told an Assembly economic development committee that he felt ill-equipped to lead the agency into a new structure within the civil service.

Sir Roger, whose relationship with his chief executive it would be fair to say had become strained, in contrast said he accepted the decision – although he had reservations – of a democratically elected government and remained as chair until it was formally disbanded in 2006.

He also served as chairman of the Broadcasting Council for Wales while representing the interests of Wales on the governing board of the BBC. He also served on the board of the Welsh-language channel S4C.

He was always happy to give advice and support to fellow entrepreneurs, particularly those in the start-up phase. He was guided by wanting to see a more thriving private sector-focused Welsh economy. He was also a strong voice for the interests of rural Wales and had a passion for fishing and shooting. He also served for more than a decade as Wales’ honorary consul to Estonia.

Sir Roger was an investor in, and chair of, Bridgend-based innovative wound-care venture Zoobiotic, which was one of the first commercial spinouts from the NHS – via Bro Morgannwg NHS Trust – in 2004.

He played a pivotal role in the commercialisation of larval therapy wound care products company and it becoming the market’s biggest player in 2013 when it acquired German rival BioMonde, which it now trades as.

He also chaired BBC charity Children in Need. Following the death of serial sex offender Jimmy Savile, Sir Roger confirmed, based on rumours and a gut instinct, that he had barred Savile from having any involvement with the charity, although without the evidence at the time to inform the police.

As chair, he believed it was his duty to act, with others, to protect staff. Having received an OBE in 1996, he was knighted in 2013 in recognition of his services to business and training in Wales.

Other roles included chairing the governing body of Swansea University, where he played a key role in helping to create its school of medicine. He was still actively involved in numerous business and other projects up until his death.

In a statement on LinkedIn, BioMonde said of Sir Roger: “His relationship with fellow directors was defined by absolute integrity and a shared devotion to the company’s mission. Sir Roger’s steadfast support for the business and its operational efforts never faltered, whether navigating the complex early days of an NHS spin-out, securing vital investment, or championing the landmark international acquisition of BioMonde that cemented the company’s position as a global leader in larval debridement therapy.

“Even as he transitioned to the role of life president, his dedication to the company’s progress and the well-being of its workforce remained absolute.

“Sir Roger’s work directly contributed to alleviating human suffering and saving limbs, a source of enormous pride for everyone privileged to work alongside him. He was not only a titan of Welsh industry and a passionate champion of life sciences, but also a mentor, a gentleman, and a deeply valued friend to many.

“While we celebrate his incredible life and the profound impact of his accomplishments, we also greatly mourn his passing. The void left by his absence will be felt deeply across our entire organisation.”

Sir Roger was also a founding fellow of the Learned Society of Wales. Its president, and former S4C chair and board member of the BBC, Elan Closs Stephens, said: “Sir Roger was a distinguished researcher and entrepreneur and a leading figure in the public life of Wales. He brought his creativity, curiosity and energy to all his many projects. Above all, he was ambitious for Wales and showed it in his roles in the WDA and the BBC .

“He was ambitious that Wales could lead the way in the new field of bio therapy. It was ambition for Wales that led him to be a founding fellow of the Learned Society of Wales. He wanted Wales to have an academy similar to the Royal Society that could develop and share ideas and knowledge. We owe him an immense debt as we honour his memory.”

Sir Roger, whose wife, Lady Ann, died last year, is survived by his daughter Bryony, son Hefin, and three grandchildren, Tomos, Aneira and Cerys.

Concern about tethering has increased in recent months after a pony was killed on a busy Cardiff road

The Welsh Government has ruled out changing the law to ban tethering of horses. A petition calling for the end of horses being tied up, often on the side of public roads, is currently the most signed on the Senedd website, with more than 13,000 people giving it their backing.

Tethering a horse is not illegal, but the RSPCA say it is one of the “most common” equine welfare issues their inspectors deal with.

The tethering of a horse involves restraining an equine with a rope, chain, or strap to an anchor point in the ground. It restricts an equine’s ability to exercise freely, perform vital social behaviours and to forage, while also potentially restricting their access to water, preventing escape from attacks by other animals and seeking shelter or shade. For our free daily briefing on the biggest issues facing the nation sign up to the Wales Matters newsletter here

In March, a pony died after being hit by a car on Rover Way in Cardiff – one of a number of similar incidents that has happened on the same road this year, according to a nearby animal rescue centre.

One person who signed the Senedd petition said she almost struck two ponies on Rover Way after the incident in March, adding that “there is absolutely no reason” for ponies to be tied up on busy roads.

RSPCA Cymru say it received 122 reports concerning horses being tethered across Wales in 2025 compared to 66 in 2024. Since 2021, and up to last month, there have been a total of 471 reports.

Any petition with more than 10,000 names will be considered for a Senedd debate.

The text reads: “The suffering of tethered horses has gone on for long enough. They are tied up in unsuitable places, often along major roads. They have no shelter, veterinary help and often no food or water. This is neglect and needs to stop. How can we call ourselves civilised when this abuse is going on in full view of everyone?”

Sara, a supported of the petition, said: “I signed the petition a long time ago when it first came out after the pony died and after almost striking two ponies on Rover Way soon after, I became more passionate about change happening.

“Like lots of people, I thought that the issue was that the authorities didn’t care, but it took me a while to speak to the right people and get the truth. I spoke to those directly involved in trying to manage the animals on Rover Way ( and other areas) and keep them safe, and I heard the sadness and frustration around the fact that they do not have enough powers to do so, that the current legislation is easily abused by those who want to do so.

“Every horse on Rover Way should be in a secure large field. There is absolutely no reason for this not to happen. Same in other areas of east Cardiff.”

She went on to add: “There is absolutely no reason for ponies to be tied to roundabouts on busy roads”

The Welsh Government has a code of practice saying tethering is “not a suitable method of management of an animal” – but it remains a permissible and commonplace practice in Wales.

Under the Control of Horses (Wales) Act 2014, councils can seize horses fly-grazing, abandoned or straying on public land without lawful authority.

Where appropriate, RSPCA Cymru urges Wales’ councils to utilise this legislation; to prevent the illegal fly-grazing of horses; and to ensure community safety and prevent welfare problems from escalating.

Caerdydd Penarth MS Huw Thomas asked the First Minister about the issue in First Minister’s questions asking if he would review a 2014 act specific to horses.

He said: “There was a tragic incident earlier this year where a formerly tethered horse was hit by a vehicle and killed on one of the approach roads into Cardiff, and it’s an issue of great concern to my constituents in Caerdydd Penarth yet horses continue to be tethered along roads such as Rover Way on the road into Cardiff, creating welfare concerns, particularly in periods of extreme weather like the recent heat, and clearly posing a risk to motorists as well.

“The RSPCA reports that tethered horses reports have almost doubled and have warned that local authorities often lack the resources and the rescue capacity.”

He referenced his former role as the leader of Cardiff Council, saying: “I know from personal experience that there are practical challenges with making full use of the Control of Horses (Wales) Act 2014.

“The First Minister will appreciate, as I do, some of the cultural sensitivities surrounding this issue and he’ll want to calibrate the government’s response accordingly.

“But in view of the increase in incidents and the wider public concern, can the First Minister outline his position on the banning of the tethering of horses and will he commit to reviewing the Control of Horses (Wales) Act 2014?”

The First Minister replied: “Tethering, clearly, is not unlawful, as the member said, but it is a practice that does raise significant welfare concerns. There are no plans to review legislation at this point in time, but the Animal Welfare Act 2006 does require horse owners to meet welfare needs, including shelter, diet, healthcare and behavioural needs.

“It’s very, very clear to me and to this Government that tethering is unsuitable for long-term use.

“The equine code of practice, though, sets conditions, including access to food, water, shelter and supervision around this.

“Alternatives are very much encouraged and it is then around the enforcement of animal welfare laws in general as to whether those animals are being treated well or not with this practice, which is clearly worrying.”

Labour say that Plaid Cymru is making the wrong call over £327m of cash that has come to Wales via a decision made in England

This week, the Plaid Cymru government lost a Senedd vote brought by Labour. The debate was about funding for additional learning needs (ALN).

It centres on whether £327m that has come to Wales via a decision made by the UK Government should be spent exclusively on ALN. The Plaid-led government say because the debts which led to the payment didn’t exist in Wales in the same way the money shouldn’t just be used for ALN and have put in the general pot to pay for other things. But political opponents say it should have been spent to help under-pressure schools.

Lynne Neagle, former education minister, has written this piece about why she thinks that’s the wrong decision

The Welsh Government must urgently put more funding into schools to support children and young people with additional learning needs.

There are over 40,000 children and young people in Wales with additional learning needs. And these are some of the most vulnerable learners in our schools and communities.

Investing in the right support is absolutely crucial to making sure these children, young people and their families can be happy, well, and reach their full learning potential.

But at the moment, Plaid Cymru’s first set of spending measures does not include an extra penny for this purpose.

Investing more funding in support for additional learning needs is the right thing to do.

It’s the right thing to do for these children and young people. It’s the right thing to do for their families and it’s the right thing to do for our schools.

Giving young people the best possible chance in life has always been my focus, including during my two years as education secretary.

For me, it wasn’t about a career. It is something so much more than that. Every child, no matter their background, deserves the chance to get on. And for far too many kids, the odds are stacked against them. That means we must focus on the quality of the support.

But we can’t get away from the fact that there’s so much more to be done, and that means schools need more funding.

The UK Government’s decision to invest in support for councils, schools, and children with special educational needs and disabilities means that there is an extra £327 million now available to the Welsh Government.

The need is there – it’s crystal clear. Our schools are under extreme pressure and the demand for additional learning needs support in Wales is rising. Children and young people’s needs require more complex, intensive and long-term support, and school reserves just don’t have enough headroom to absorb the rising costs.

That’s why, in the spring, the Welsh Local Government Association reported that the growing complexity of need was creating unsustainable financial strain.

They said that education was “one of the most acute pressures highlighted by councils” as “ALN spending accounts for more than a quarter of all school budget pressures”.

And that’s why every single Welsh council – of every political stripe – and the teaching unions have called for this money to go to schools.

And NAHT Cymru have launched a petition calling for the consequential funding to go to support additional learning needs in Wales.

And yet – despite all this – Plaid Cymru have not allocated a single penny of the £327 million that’s available for children with additional learning needs to schools in Wales in their first set of spending measures.

I cannot make this clear enough – councils, schools, and children and young people with additional learning needs urgently need this investment.

Why should Welsh councils, schools and children miss out?

And I know the Government has said that we need a more long-term solution. But waiting for the recurring funding in 2028-29 just won’t cut it for those children and young people who need this support now.

Welsh councils, schools and children with additional learning needs simply cannot wait that long.

That’s why it’s so deeply concerning to see Plaid Cymru try to fund their uncosted manifesto pledges at the expense of schools and children with additional learning needs.

Giving our children and young people the best possible start in life is one of the most important things a government can do. It’s a duty, and Welsh Labour is calling on this government to step up.

Columnist Dylan Jones Evans asks what an era of power sharing in the Senedd may mean for Wales

Since devolution began twenty-seven years ago, Welsh politics has been shaped by Labour’s dominance, even when that dominance has depended on agreements with others.

Whilst some would argue that the result has been a stable political system, waiting lists have grown, the economy has underperformed, housing pressure has intensified, and the same arguments about productivity, poverty, and public services have been rehearsed year after year.

With the polls currently suggesting that no party will secure an overall majority in the Senedd, the country’s future may depend on whether parties can agree on enough specific measures to pass budgets, shape legislation and keep a government in office. Indeed, when you read all six manifestos, there is a suggestion that the parties are much closer than their campaign language suggests.

The biggest issue is health, and every party, from Labour to Reform, begins with the same judgment: that the NHS in Wales is under severe strain and that public confidence has been badly damaged. That matters because, in a Senedd without a majority, health is the obvious ground for agreement.

Labour wants to focus on new hospitals and shorter waiting times, while Plaid Cymru is promising surgical hubs and a stronger link between health and care. The Liberal Democrats want to expand care capacity to relieve pressure on hospitals, and the Conservatives say they would declare a health emergency. Despite agreeing on almost nothing else, Reform and the Greens both argue that urgent intervention is needed.

There are profound differences over how the NHS should be funded, managed and reformed, but there could be enough overlap for an administration to secure backing for a pragmatic programme to cut waiting lists, expand planned care and tackle the indignity of corridor care. In a hung Senedd, that is likely to be the first test of whether politicians can accept that compromise is not weakness if it gets patients treated sooner.

Childcare is one of the few policy areas where there is some agreement, even if they differ on whether expansion should be universal or targeted. Plaid Cymru and the Lib Dems want a universal childcare offer from nine months, whilst the Greens back universal childcare from nine months, and the Conservatives support extending free childcare for children from nine months to four years. Labour has again made childcare expansion one of its main promises.

This is not a minor point, as childcare is increasingly treated as economic infrastructure that helps parents return to work and supports family incomes. If Wales ends up with no party in command, childcare expansion looks like one of the easiest areas for a cross-party deal.

The economy offers a similar, if more limited, opportunity, and no party argues that Wales is performing as it should. Labour wants a new industrial strategy; Plaid and the Conservatives are proposing a National Development Agency; and the Liberal Democrats are talking about changing business rates. Even Reform, for all its populist language, frames its offer around backing business, rewarding work and cutting waste.

That does not amount to a shared economic philosophy, but it does suggest room for agreement on measures such as reforming business rates, improving support for apprenticeships and simplifying business support. Those are not glamorous policies, but they are the sort of interventions a minority government could get through in the next four years.

Housing is more politically divided, but even here, there are points of common agreement. Labour, Plaid Cymru, the Liberal Democrats and the Greens all argue that Wales needs more affordable and social housing, stronger action on homelessness and a bigger state role in fixing a market that is failing too many people. The Welsh Conservatives are more focused on planning reform, whereas Reform places less emphasis on expanding social housing.

So housing is not an issue on which all six parties can meet in the middle, but if the arithmetic points to a centre-left understanding, it is an area where that agreement could become substantial.

Then there is the environment, where Net Zero remains a dividing line, especially with Reform. However, on issues such as river pollution and water quality, there is a much broader consensus than many might expect. Labour, the Liberal Democrats, the Greens, the Conservatives and Reform all promise, in one form or another, tougher action on polluted rivers and sewage discharges, and that ought to be enough to support tougher enforcement.

Tax is the one example where consensus will be hardest to reach. Labour says it will not raise Welsh income tax, whilst the Conservatives and Reform want tax cuts. In contrast, the Liberal Democrats leave the door open to a temporary rise to fund social care, Plaid wants broader tax powers and a more progressive framework, and the Greens want much wider tax reform. That is not a basis for easy agreement, nor are the constitutional questions, with Plaid remaining fundamentally different from those of the Conservatives, Reform and the Liberal Democrats.

What should we conclude from all this? A Senedd without a majority need not mean paralysis, and it is unlikely there will be a grand coalition around a shared view of the country’s future, as the ideological divides are too deep. But it may produce a more negotiated politics in which parties are forced to agree on specific measures in areas where the public is demanding action.

After nearly three decades in which Welsh politics has been shaped by one party’s dominance, such a shift would be significant. The frustration in Wales is not simply that politicians disagree, but that we still face the same problems as we did two decades ago.

If no party has a majority, the next government will be judged not by the elegance of its agreements but by its ability to make the Welsh state work better. Therefore, the real test may not be who comes first on election night, but whether the next Senedd can make difficult compromises that lead to shorter waits, better services and a stronger economy.

Noah Herniman was just 15 when he was told he has an inoperable brain tumour

It seems unfathomably cruel to sit in front of a 19-year-old who has already had to plan his funeral and has drawn up a plan to end his life.

Noah Herniman was just 14 when, in 2019, he spotted a tremor in his arm. Then, after a drawn out process of testing, he was sat down in a room with his mum in June 2021 and he was told the cause was a brain tumour and it was inoperable.

His tumour can’t be cured, or removed, but he was told chemotherapy could help manage it. His first round of chemo lasted 74 weeks.

In that time his weight plummeted and he needed feeding tubes and a wheelchair. He then started a second 74-week course of chemo.

When they were first told about the tumour, in his brain stem, the family were told that even a half a millimetre growth would be dangerous. Despite all he has been through the tumour is now 38.2mm in size.

There is no prognosis or timescale for Noah but there is one thing he is sure of, which is that he wants to be able to end his own life if it gets to the point that his condition worsens to such a degree he cannot do things for himself.

In a few weeks Senedd members will vote about the assisted dying legislation currently making its way – slowly – through Westminster and Noah wants his story to be at the front of their minds.

Noah’s dad, Nigel, 59, has a condition called neurofibromatosis (NF1), which causes tumours to grow along nerves, and when Noah was born he was told because he too has it he would need lifelong scans.

In March 2021 a mass was spotted on his brain and he was then told it was an inoperable tumour in his medulla, his lower brainstem.

He asked his consultant: “Is it going to kill me?” And she replied: “Well, yes, most probably.” For our free daily briefing on the biggest issues facing the nation, sign up to the Wales Matters newsletter here

The chemo was brutal and incredibly debilitating. By September the side effects of the tumour meant he couldn’t swallow and his gag reflex was almost non-existent. His existing NF1 condition meant he couldn’t have radiotherapy so he had chemotherapy.

“He was in a wheelchair, had feeding tubes, he was a bag of bones – and I mean he dropped 10kg in four weeks – and he was poorly, his voice changed, everything. His life was gone,” his mum Shelley, 54, said.

By March 2022 he had nerve damage and weakness on his left-hand side, which meant he had to use a wheelchair, and any further treatment was halted.

A month later he was told the chemotherapy hadn’t worked and his tumour had grown.

Anything under 2mm is considered “stable”, Shelley explained, but when his tumour was first spotted the family were told Noah couldn’t even afford half a millimetre’s growth.

After his first round of chemo his tumour had grown by 1cm. Despite a second gruelling round, a scan a few weeks ago showed it is now larger once again.

“It’s got to that point where he knows that they can’t change it now,” said Shelley.

“[Chemotherapy] was such a long hard process and it affects so much of their life. Their childhood is completely obliterated by it,” she added.

As a teenager he was treated on a children’s unit but the man in front of us is getting his breakfast ready, making a round of teas, and sharing the tips to make the best hot chocolates.

Shelley said: “He has had to watch toddlers die and that affected him.

“He lost one of his closest friends who he met through treatment just before Christmas – she was the same age as him. It’s been really tough on him but he’s been brilliant.”

Despite all he has been through he has won numerous awards for fundraising and, despite missing a huge chunk of school due to his treatment, he sat and passed five GCSEs which he passed with B and C grades.

The Terminally Ill Adults (End of Life) Bill, colloquially known as assisted dying, would make it legal for over-18s who are terminally ill to be given assistance to end their own lives in certain circumstances.

As it stands, in theory, assisted dying could be made legal but effectively banned in Wales depending how the vote later this month goes. While the assisted dying law falls under Westminster’s jurisdiction the Senedd has to agree to it before it applies in Wales.

A Senedd vote is due to take place on February 24 but it is yet to finish its Westminster journey. While MPs narrowly backed the bill its journey through the Lords has been vastly delayed.

While it is unlikely Senedd members can stop assisted dying becoming legal for terminally-ill people in Wales there is the prospect that if the bill does pass all stages in Westminster but then the Senedd does not back it the service would not be available on the Welsh NHS.

It has raised questions about whether private operators could offer the service in Wales and what that means for people potentially travelling across the border to die in England.

When the current Senedd had a free vote on assisted dying in October 2024 they voted against it and there has been vocal lobbying on both sides.

Noah is clear that he wants Welsh Senedd members to ensure the same rules are in place in England and Wales.

His mum, who was initially fiercely opposed to assisted dying, has during their experiences changed her mind.

They are now lobbying for Senedd members to back the so-called legislative consent motion.

On the flip side more than 250 health care professionals recently signed a letter urging MSs to vote against the law saying it was “deeply flawed” and there has been “inadequate” oversight.

Noah said since his diagnosis he has researched assisted dying. “One of the first things I’d said was: ‘If I get to the point where I can’t do stuff on my own anymore then take me to Switzerland’.

“Mum’s response was: ‘I’m not going to jail for you’,” he said with a smile. Noah admitted he had a dark sense of humour before his diagnosis, and it’s got more so in recent years.

When assisted dying began its legislative journey he was immediately in favour but said safeguards are essential.

“I think there should be safeguards, they should absolutely do all that, but it shouldn’t take absolutely years to do because by that point they should have the resources to do it in a few months.

“I don’t really think that’s fair on the people who are suffering, who want to go via Dignitas, whose families have to watch them suffer.

“Look at it this way: if you’ve got someone who’s got two years, say, but it’s two years in absolute agony where they can’t walk, they can’t breathe, eat anything on their own.

“I don’t really know if words can describe that but apart from saying that you can’t breathe on your own, can’t eat or walk or drink on your own, you can’t even go to the toilet on your own, need constant medication, need constant pain relief. If someone has got on to that point where they’re in a state of constant suffering where they can’t even leave their bed and they’ve got weeks or months left before passing on why would you stop them?

“If there’s no other way to help them why would you not let them take that route to stop the suffering, to stop pain? If they’re going to die just let them do it with dignity.”

Mother and son both agree the law has to be the same in England as it is in Wales.

Noah said: “If it’s gone ahead in England and we’re supposed to be the UK let me ask you this politicians: what is wrong with you?

“Why would we, as a nation, want our citizens to suffer through hell just because we want to stand apart from the crowd, just because we want do this differently? How is that fair on anyone?”

Shelley said as they live in Chepstow, and can see England almost from their front door, they were one of those areas where the different pandemic rules were acutely obvious. A law which is different between two countries would, they believe, not be fair.

“I’ve gone full circle. I’ve come from absolutely [backing assisted dying] to the fact I’ve seen people die, I’ve see them die slowly and desperately sadly when they could have been helped,” said Shelley.

“They could’ve been in a better position. There’ll be lots of people that have never been in a situation where they’ve had to think about it.” Now, for her, the pros have outweighed the cons.

She said she isn’t convinced the nuances of the law are being understood, even by those due to vote on it, such as the law coming in only at the end of someone’s life. Noah agreed.

What, I asked him, is his message to the politicians soon to decide on this huge, emotive, and divisive issue?

“Have you got any family members in that sort of circumstance? Do you know how it feels to watch someone suffer through that or even to be the one suffering through that?

“To be in a constant state of suffering, in pain, where you’re scared you won’t even be able to breathe on your own, feeling like every day could be the last day in a very painful way?

“Would you rather if this were you? Would you rather a quick, painless death? Or would you rather a slow one drawn out with suffering? You wouldn’t put an animal through it so why would you put a person through it?”

That has, he said, been his life at points.

“There have been times I’ve felt that way where I sometimes struggle to breathe when I have that fear. I struggle with my appetite and I think: ‘Oh great – brain tumour growth’.

“I’ve been lucky enough that it’s been more side effects to an extent but I personally think if there’s people who are getting those side effects stronger than I am and they can’t cope and they’re in agony, terrified, and alone or without family members. Why would you want them to go through that hell when they’re going to die anyway?

“Why make them go through a long, suffering death when you could give them a quicker, painless way out if there’s an alternative?”

Without a UK law he said if his condition worsened, and he was told there was nothing more to be done, he would look into going to Switzerland, “as a last resort if I got to that point where I was starting to suffer and there was nothing really they could do and I knew that it just gets worse as it went on”.

He added: “Terrified as I am of dying I’d also rather, myself, I’d rather die quickly and painlessly than suffering a slow, drawn-out death because it gets to a point where dying like that would become hell in itself.”

The choice facing him right now could leave his family facing prosecution. Is that something that causes him further worry?

“To an extent. I know it sounds selfish but if it gets to that point then I’d want to do that anyway.

“Much as I wouldn’t want my family to be suffering or in trouble it gets to an extent where [you think]: ‘Why?’. What is the point of going on suffering when you’ve got months, weeks left and you can’t do that anymore?”

His mum has, she admitted, gone full circle on her position.

Shelley said: “He’s always been very vocal, very honest about how he actually feels.

“It was a strange conversation to have but he said: ‘I don’t want to suffer’. He said: ‘If it comes to it and there’s no other options I want to go to Switzerland’.

“I dismissed it. But as time progressed he was quite adamant that’s what he wanted to do.

“I’m his mum. I gave birth to him, I brought him into the world – I certainly don’t want to take him out. So that in itself, it just didn’t seem right.” But she said her son’s condition progressing means now she has shifted. “It didn’t seemed right that anybody’s got the right to actually take that away from someone.

“As time’s progressed Noah’s been very adamant about what he wants and believes in what he wants so we’ve done research. There’s absolutely no way I would let him go to Switzerland on his own. It wouldn’t happen.

“There’s no way I’d let him go off on his own.

“I just think I need to be there for my son and if that’s what he needs to choose, if that’s the way his life is going end – it obviously will be towards the end – then that’s exactly what I’ll do.

“If that means I have to spend the rest of my time locked up then I would not let him go through it on his own.”

She added: “We’ve seen, unfortunately, the tumour grow.

“Eventually, bit by bit, he will deteriorate to a point where he could possibly be locked in so he won’t be able to communicate with us.

“He won’t able to do anything for himself.

“So you’d be left with a situation where he could probably blink and that might be it. With Noah it is his core functions which are being affected by the tumour so that’d be breathing, heart, the lungs and everything.”

Their day-to-day life is continuing, because it has to. When we meet Shelley has just finished an early shift on the railway and they are decorating the hallway in their home. Noah’s brother is upstairs studying on his university work.

Throughout his treatment, Noah has raised thousands of pounds to pay for Noah’s Retreat, a holiday lodge for young people in the same position as him. He has written his bucket list – and ticked off getting his own Dalek. Another of those five things he wanted to achieve – to pursue an acting career – is coming true too as this September he will go to university to study drama in Falmouth.

For Shelley that’s both something she wants for her son but also terrifying because, as any parent knows, all you want is for your kids to be happy and healthy and while going to university is something Noah is desperate for she knows he will have to return to Wales for regular treatment and worries about what happens if he falls ill while more than three hours away.

“It’s really, really bizarre because for me I’ll have good days, bad days, brilliant days. I’ve got a 19-year-old who is an absolute miracle – he’ll be 20 in a few weeks’ time and he’s brilliant. I treasure every moment.

“It’s been difficult but it breaks my heart, it really does, when I think of the things that he’s missed out on, the friends that he has lost, which is inevitable.

“For me as a mum there is not a day that doesn’t go by where I say to my husband: ‘I just can’t believe it. It doesn’t seem real’.

“We have these conversations, we’ve had to plan funerals, but we’ve got to a point now where we have to laugh at these things because we have no choice.”

For Noah he doesn’t know what the future holds and there is no timescale he can be given.

Asked if he feels angry this is the sort of choice he, a 19-year-old, should be facing, he said: “It’s got on to the point where I’ve just accepted it now.

“I mean it’s still s*** but it is what it is.

“I do have days where I think: ‘How the hell have I got this?’ That’s the universe I suppose.”

One politician called for an investigation into ‘whether we have a scandal on the use of public money here’

Former employees of a failed energy business have launched legal action after its collapse led to nearly 300 redundancies. Swansea-based Consumer Energy Solutions (CES) made massive profits before its controversial entry into administration.

The administration was confirmed last month, just 28 days into a 45-day consultation period about the future of the business. More than 220 former employees are now challenging the way the redundancy process was handled, arguing that the consultation was not conducted in accordance with the law, ITV reports.

CES, which operated under the UK Government’s ECO4 scheme to upgrade homes’ energy efficiency, reported profits exceeding £35m in its last published accounts (2024) – but stated it was no longer viable to continue trading as the scheme is scheduled to end in 2026. Make sure you never miss Wales’ biggest updates by getting our daily newsletter.

The business employed 295 people in Swansea and the Treorchy area of Rhondda Cynon Taf.

Jack Cromwell joined CES as a site manager coordinator in September only to be made redundant five months later. “It’s had a massive impact on me,” he told S4C programme Y Byd ar Bedwar.

“I’ve got bills to pay, rent to pay, council tax. Unless I find alternative employment soon, I don’t know how I’m going to support that in the long run.”

Mr Cromwell, who has applied for more than 40 positions since losing his job, is among those pursuing legal action, according to ITV.

“A lot of us are angry because we feel our concerns haven’t been taken into account by the employers. I personally feel that the wool has been pulled over our eyes. I was sold the dream coming here.

“We’ve been left with no job, no pay, no sort of idea on how any of us are going to support ourselves in the future. This shouldn’t be happening,” he said.

The profit from 2024 has intensified questions about oversight of the ECO4 scheme. Plaid Cymru MP Liz Saville-Roberts (Dwyfor Meirionnydd) has called for a National Audit investigation into the sector.

“I have every sympathy with people that have lost their jobs at very short notice,” she said. “This is an appalling situation.

“We need a National Audit investigation into the way these companies conducted themselves, the level of profits they made, the work practices they promoted and carried out, and whether we have a scandal on the use of public money here.”

The company is part of City Energy Group, which blamed CES’ collapse on the “run-down” of ECO4, an initiative aimed at improving energy efficiency in low-income and vulnerable households.

The group said: “The conclusion of the ECO4 scheme created significant headwinds for the CES arm of our business which generated significant revenues for this specific subsidiary.

“Despite exhaustive efforts to secure a solvent path forward, regrettably it was not viable to continue trading.”

KR8 Advisory Limited, the appointed administrator, said it is working closely with the Redundancy Payments Service to ensure employees receive statutory entitlements, including redundancy and notice pay.

A spokesperson for the Department for Energy Security and Net Zero said the UK Government had “inherited a flawed system of oversight and regulation” and is working with relevant authorities to address the situation and support affected workers.

The department previously said ECO4 was not “delivering value for money”, adding: “We are instead investing an additional £1.5billion into our Warm Homes Plan, taking it to nearly £15billion – the biggest ever public investment to upgrade homes and tackle fuel poverty.”

Y Byd ar Bedwar: Cwmni Mewn Creisis is on S4C, S4C Clic and BBC iPlayer, 16 February. English subtitles are available.

‘The health board should reassess their decision,’ said one politician

An under-fire hospital is facing calls to suspend an employee who is on police bail after being arrested on suspicion of rape. Last week we revealed Cardiff’s University Hospital of Wales (UHW) had opted against suspending the staff member, leaving the complainant horrified.

South Wales Police confirmed a man from Cardiff was arrested last August on suspicion of rape, intentional strangulation, coercive or controlling behaviour, stalking, and common assault. He remains on bail while police investigate but Cardiff and Vale university health board decided to place him in “a supervised non-patient facing role” rather than suspending him.

The complainant, who has recently been attending appointments at the hospital in Heath, said the health board’s stance had left her “very disheartened and quite frightened”. For the biggest stories in Wales first sign up to our daily newsletter here.

Heledd Fychan, Plaid Cymru MS for South Wales Central, has now told us: “It’s imperative that the complainant is able to feel safe when attending hospital appointments whilst the police investigation continues into these extremely serious allegations, and clearly that’s not the case as things stand.

“In light of this, the health board should reassess their decision taking into account the fact that the complainant is a patient. I will be raising this matter with the health board.”

Llamau, a charity that tackles domestic abuse and related issues, said it is “imperative any employer sends a message of zero tolerance to allegations of such behaviour”.

The charity said employers must follow “appropriate safeguarding procedures” and take all allegations of sexual violence “extremely seriously”.

We were first contacted by the complainant after the health board refused to tell her whether it had suspended the staff member. She said she was “terrified” of encountering him at the hospital during one of her appointments.

Her concerns grew when she saw a social media image of the suspect attending a work do, which took place away from the UHW premises.

After WalesOnline asked about the status of the suspect, the health board confirmed he had not been suspended but had been “placed in a supervised non-patient facing role while the alleged offences are being investigated”.

When we informed the complainant of this, she began crying. “l feel quite disheartened by the NHS and whoever made this decision,” she said.

“I’m a vulnerable person going to my appointments. After what he did to me, it scares me and I just don’t think it’s right. I kind of feel cheated, just very disheartened and quite frightened.”

She is worried that even if the suspect’s current role does not involve any contact with patients, there could be a safeguarding risk to colleagues and others he might interact with.

Her mother added: “I honestly have no words. I’m in total shock. What is it coming to that [an alleged] rapist is working somewhere that is meant to support vulnerable, helpless people?

“Without [WalesOnline] finding this out, we would still be in the dark. My daughter could come across him while going to her appointments.

“She is under the crisis team because of the impact this has had on her and the very same NHS is continuing to employ this individual.”

This is the latest in a series of major controversies to have hit the health board. We revealed two damning internal reports from the last 18 months that found potential criminal behaviour had been tolerated under weak leadership. This included theft and use of illegal drugs in the operating theatre department, as well as physical violence and reports of sabotage in the decontamination unit.

We also recently reported claims that an employee of the decontamination unit had kept his job despite a disciplinary investigation upholding an allegation that he had suddenly exposed his private parts to a young female colleague.

Speaking about the rape suspect, a health board spokeswoman said it had “taken action and carried out a detailed risk assessment with safeguarding colleagues with the details and evidence provided”.

She added: “As a health board we take allegations such as these extremely seriously. Our fundamental priority is the safety of our patients, visitors, and colleagues, and this decision was made following reviewing the detailed risk assessment.

“We are continuing to liaise with South Wales Police who are leading the investigation and are unable to comment further at this stage.”

You can read more here about our recent investigations into the beleaguered health board, which has been placed one step below special measures by the Welsh Government.

If you know of a story we should be investigating, email us at conor.gogarty@walesonline.co.uk

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The electric bikes on pavements has been mentioned to me. The street I live in is often used as a race track until last Thursday a mobile speed camera operated just outside my house. For some reason cars are driving much more carefully along my street now. Food for thought.