Health

Calls for ‘Owain’s law’ to aid brain tumour treatment

Published

1 week ago

July 4, 2025

SENEDD Members called for Owain’s law, in memory of a young father, to ensure a gold-standard approach to preserving human tissue for other cancer patients in future.

Hefin David led a debate on a cross-party motion on July 2 calling for a law named after his Caerphilly constituent Owain James, who sadly died last year.

He said: “Owain was only 34 years old when he was diagnosed with a 14cm, malignant, grade-four brain tumour in his right frontal lobe. His neurosurgeon said it was one of the biggest tumours she’d ever come across in her professional career.

“It was an absolutely devastating blow to Owain, his wife Ellie, who is in the public gallery today, and his daughter Amelia, who at the time was only 18 months old. Until then, Owain had always been a fit and healthy young man.”

Dr David said the family turned to private treatment and found a personalised vaccine that used a patient’s tumour tissue to educate the immune system to recognise cancerous cells.

He told the Senedd: “The problem here, however, was that Owain needed fresh frozen tumour tissue to develop a sufficient dose of the vaccine. Owain had had 7cm of tissue surgically removed but, unfortunately, only 1cm of this was fresh frozen and could be used.”

The Caerphilly Senedd Member explained Owain only had three doses of vaccine when it should have been more like 30 doses, but he initially made a remarkable recovery.

“Unfortunately, metastasis caused his tumour to recur elsewhere,” he said. “This time, the tumour was too aggressive and Owain sadly passed away in June 2024.

Caerphilly's Labour MS Hefin David — Caerphilly’s Labour MS Hefin David

“Ellie, 35 years of age, now lives with the regret that they were only able to develop and obtain enough doses for those three vaccines.

“Had there been more, we feel that Owain would still be alive today.”

Dr David said fresh frozen tissue is regarded as the gold-standard approach and can be used for vaccines, therapies, research and genome sequencing.

He explained: “This kind of use, though, can only be done when the tumour is fresh frozen, which it wasn’t in Owain’s case. Owain’s law seeks to address this. It seeks to make this the default process for storing surgically removed tissue in Wales.”

South Wales East MS Peredur Owen Griffiths

Plaid Cymru’s Peredur Owen Griffiths, who represents South Wales East, said: “My mother also died from a brain tumour, so it’s an issue that is deeply personal for me.

“Brain tumours remain the biggest cancer killer of children and adults under 40, yet they receive just one per cent of national cancer research funding.

“Families like mine and Owain’s are let down not only by research but also by how precious tumour tissue is managed. Owain’s law will enshrine a vital principle that patients and families must be fully informed and able to consent.”

Owain James playing football for Church Village FC

Mr Owen Griffiths added: “This is more than a technical protocol. This is a matter of dignity, respect and hope for families facing devastating diagnoses.”

The Conservatives’ Altaf Hussain, a former surgeon, supported Owain’s law but emphasised the importance of accommodations for religious preferences.

Mabon ap Gwynfor, Plaid Cymru’s shadow health secretary, expressed concerns about long waits before receiving a diagnosis and a lack of diagnostic machines such as scanners.

Mr ap Gwynfor told the Senedd: “Even after receiving a diagnosis, we have a lack of specialist treatment centres – with far too many of our patients having to travel very long distances at times of weakness to receive their treatment.”

Backing Owain’s law, he said: “This proposal does reflect two core principles at the heart of our NHS. The first is that the NHS belongs to the public…. Second, it’s the voice of the patient, their concerns, their views, that should be at the heart of every decision made.”

Jeremy Miles, for the Welsh Government, stressed the need to proceed with care and warned a legal requirement to freeze all brain tumour tissue risks unintended consequences.

Wales’ health secretary said: “Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies.

“Overriding that clinical discretion through legislation could compromise timely diagnosis or create conflict where tissue volume is limited, which is why the government does not believe that the case is made for legislation.”

While the non-binding motion was agreed unanimously, Owain’s law is unlikely to proceed without Welsh ministers’ full support. But Dr David argued the UK and other countries will eventually introduce such a law as the availability of tissue becomes key to treatment.

Closing the debate, he said: “Let’s remember Owain for everything he’s done today. Even in his passing, he’s contributed to the debate on keeping patients alive for longer.”

Health

Welsh Lib Dems launch major survey on health and social care

Published

12 hours ago

July 10, 2025

Tom Sinclair

Party seeks 100,000 responses to shape future NHS reform in Wales

THE WELSH LIBERAL DEMOCRATS have launched a nationwide survey to gather public views on the state of the NHS and social care system in Wales.

Aiming for 100,000 responses, the NHS and Social Care Survey is designed to uncover what is working — and what is not — within Welsh healthcare. The results will help the party develop what it describes as a bold, evidence-based plan to reform services ahead of the 2026 Senedd elections.

Launching the initiative, Welsh Lib Dem leader Jane Dodds MS said: “Despite the incredible dedication of our doctors, nurses and care workers, after 25 years of Labour rule the NHS and social care system here in Wales simply isn’t working for too many people.

“Whether it’s unacceptable waits for surgery or the growing crisis in NHS dentistry, people are being let down — and it’s time for change.

“That’s why we’re asking people across Wales to share their experiences and ideas. Your voice will help shape a bold, evidence-led plan to fix our health and social care services and ensure they’re fit for the future.”

The survey is available online and in print, with party volunteers distributing copies in communities across Wales. The party is encouraging anyone living in Wales to take part.

Health and social care reform is expected to be a key pillar of the Welsh Liberal Democrats’ manifesto for 2026.

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Entertainment

Flu-like outbreak forces Eisteddfod cancellation amid public health scare

Published

1 day ago

July 9, 2025

Tom Sinclair

Emergency declared as festival-goers fall ill — site cleared to reopen Thursday

THE LLANGOLLEN International Musical Eisteddfod was forced to cancel its headline event on Wednesday evening (July 9) after a sudden outbreak of illness prompted the Welsh Ambulance Service to declare an extraordinary incident.

Multiple attendees fell ill with flu-like symptoms, leading to the cancellation of the evening concert — which was set to feature Sir Karl Jenkins conducting One World, his symphonic celebration of peace.

Festival organisers said the nature and scale of the incident meant it was the first time in the Eisteddfod’s history an event had been cancelled in this way.

A spokesperson confirmed: “Following Public Health Wales advice, the incident related to a flu-like outbreak and affected multiple people at one time. We take the safety of our audience, performers and volunteers extremely seriously.”

Medical teams on site were supported by the Welsh Ambulance Service, who confirmed the declaration of a public health incident due to the number of people affected simultaneously.

The festival had been running as normal throughout the day, with over 4,000 performers from 35 countries taking part in cultural performances, parades, and competitions.

Just hours before the cancellation, organisers had sent out a schedule for what was expected to be the busiest day of the event so far, celebrating the 80th anniversary of the United Nations.

Despite the disruption, organisers have now confirmed that the site has been declared safe to reopen on Thursday (10 July) from 9:00am.

“We are pleased to report our site has been cleared to reopen,” the Eisteddfod said in a further statement issued late Wednesday evening.

No further details have been released about the cause of the illness, but Public Health Wales is continuing to monitor the situation.

The Herald understands that stewards, medical staff and volunteers acted quickly and professionally to contain the incident and support those who were unwell.

Health

Hundreds speak out as NHS waiting list scandal deepens in west Wales

Published

3 days ago

July 8, 2025

Tom Sinclair

Patients say they were removed without warning, left in pain, or forgotten entirely – now they want answers

A WAVE of testimony from Pembrokeshire patients has revealed the true scale of the NHS waiting list crisis, with more than 100 people coming forward in just a few days to share stories of lost letters, cancelled appointments, and being removed from hospital care without ever being told.

Following a public appeal by The Pembrokeshire Herald, readers responded in force — describing what they call a “shambolic” system, in which patients are being quietly dropped from waiting lists, given incorrect or late information, and forced to chase departments that never answer the phone.

Letters never arrived — then the appointment was gone

One mother told the Herald she only discovered her young son had been removed from a waiting list for surgery after chasing a non-existent appointment.

“We never received the original letter. Then we turned up for a new date, only to be told it had been cancelled — but no one told us,” she said. “Later, they told me he’d been removed from the list for missing appointments we never knew about.”

In another case, a mother of a child with a rare genetic condition said her daughter was due annual dermatology reviews — but after a cancellation in 2023, she heard nothing for months. In February this year, she received a letter stating her daughter had missed an appointment and was being removed. She said: “We never got the original appointment, and when we finally got one for April, it was cancelled too. We’ve heard nothing since.”

Voicemail chaos and ‘no way to contact anyone’

A recurring theme in the responses was departments not answering their phones, and voicemail systems that lead nowhere.

One woman, removed from a physio course after a single missed session, said: “I rang three times that day, left a full message explaining I was unwell, but no one ever rang me back. Then a letter came saying I’d been removed from the course. I tried ringing again — just voicemail. After the second time, I gave up.”

In another case, a patient who had been waiting for diabetic retinopathy screening since before Covid told us: “I’ve phoned multiple times over three years. Every time they say they’ll send an appointment. I’ve given up.”

One former patient said he was moved to the back of the list after a missed telephone consultation — even though the doctor rang an hour early, and never called again.

GP failures and missed referrals

Many readers raised concerns about general practice as well as hospitals, claiming referrals were never sent or followed up.

One woman wrote: “If my old GP had referred me straight away, I wouldn’t be in the state I am now. As soon as I changed surgeries, I was seen — but by then the damage was done. My life’s been ruined.”

Another reader commented that her father never got the treatment he needed, and believes that delays in referrals contributed to his death.

Transport cancellations and “cheating the system”

Several readers also raised concerns about non-emergency ambulance transport being cancelled at short notice, leaving vulnerable patients unable to attend appointments.

One woman said: “My dad has had his transport cancelled the night before appointments. We had no backup, and he missed it.”

Another reader wrote: “It’s all about stats. They remove people from the list, say they’ve missed appointments, and it makes the waiting time numbers look better. It’s cheating, plain and simple.”

Health board responds — but no figures yet

Hywel Dda University Health Board has responded to the Herald’s request for comment, stating it follows strict national protocols and that any patient removed in error will be reinstated at their original place on the list.

In a statement, Director of Operational Planning and Performance Keith Jones said: “We make every effort to send appointment letters in a timely manner and it is part of our procedure to phone a patient should we need to see them at short notice or to cancel appointments.

We have received feedback from some patients of incidences where appointment letters have not been received in a timely manner. We are reviewing the factors which may lead to late receipt of appointment letters and will implement any necessary improvements.”

The health board also promotes a digital system, Hywel Dda Post, for accessing appointment details online. However, patients have reported issues with this too — particularly those without smartphones or digital literacy.

The board was unable to provide any figures on how many patients have been removed from waiting lists over the last five years and advised the Herald to submit a Freedom of Information request, which has now been done.

Public anger growing

With more than 100 people coming forward in less than 48 hours, public anger is mounting. Many say they are being pushed toward private treatment, or simply left to suffer for years.

“I’ve been in chronic pain for over a decade waiting for three surgeries,” one woman wrote. “I’ve lost 11 years of my life.”

Another added: “It’s not just the health board. Welsh Labour has failed us for years. They have money for road signs and tree projects abroad — but not for our surgeries.”

What’s next?

The Herald will continue to investigate this issue and publish further updates once the FOI response is received.

We are compiling a formal submission to both the Health Board and the Welsh Government, including anonymised patient testimonies, to call for a public explanation of how waiting lists are managed — and how many patients have been quietly removed.

If you or a family member has experienced anything similar — missed letters, unexplained removals, transport cancellations, or GP referral failures — you can contact us in confidence at:

📧 [email protected]