Connect with us
Advertisement
Advertisement

News

Crabb: Welsh Government has ‘let down patients’ over Cystic Fibrosis drug Orkambi

Published

on

STEPHEN CRABB has blasted the Welsh Government for not doing enough to help Cystic Fibrosis suffers in Wales.

We are now the only British nation where pioneering cystic fibrosis medicines are not available, the MP said.

But the Health Minister for Wales says a meeting between officials in Cardiff Bay and the drug firm is expected to take place next week.

Patients are calling for a potentially life saving drug to be made available on the NHS after it was approved in England.

Campaigners want Cardiff to provide the drug on the NHS, but there is a concern over costs.

This follows the news that the UK Government has secured and agreement with Vertex Pharmaceuticals to make available all three cystic fibrosis medicines for English patients, disappointing Welsh patients, as they are the only patients unable to get the medicine in Britain.

In September, an agreement was reached between the Scottish Government and Vertex allowing the drugs to help patients.

However in Wales, no agreement has yet been reached with the Welsh Government.

Stephen Crabb MP said: “It is unacceptable that cystic fibrosis sufferers in Wales are not able to have the same treatment as their English or Scottish counterparts, thanks to the Welsh Government.

“Too often constituents tell me that treatment for a range of illnesses and diseases are not available in Wales, but they are available in England. That is the legacy of 20 years of Labour running the Welsh NHS.”there is a concern over the cost.

The drug, named Orkambi, is described as a “precision medicine” and it treats the underlying genetic mutation of cystic fibrosis. Traditional medicines only treat the symptoms.

Cystic Fibrosis is a genetic condition which affects around one in every 2,500 babies born, with around 1,000 new cases being diagnosed each year. The condition causes the body to produce thick mucus, which affects the lungs and digestive system in particular.

Wales’ health minister Vaughan Gething issued a statement to Assembly Members saying Welsh Government officials were in talks with representatives from pharmaceutical firm Vertex.

He told The Pembrokeshire Herald: “I can confirm that Vertex are engaging constructively with Welsh Government officials with a view to brokering an equivalent arrangement to benefit patients in Wales.

“My position has always been that new and innovative medicines should be made available quickly and consistently for patients in Wales but only where their cost fairly reflects the evidence of their benefits.. I can confirm that Vertex are engaging constructively with Welsh Government officials with a view to brokering an equivalent arrangement to benefit patients in Wales.

“My position has always been that new and innovative medicines should be made available quickly and consistently for patients in Wales but only where their cost fairly reflects the evidence of their benefits.”

“My officials have been working alongside NHS England during these negotiations and, as a result, the legal agreement reached includes a requirement that Vertex must make equivalent terms available to the NHS in Wales.”

Mr Gething added: “I will ensure Assembly Members are updated when further details are available.”

 

Community

Princess of Wales praised for ‘skill’ during local wool mill and factory visit

Published

on

Royal tour shines spotlight on west Wales textile heritage and local jobs

CATHERINE, Princess of Wales was told “she’s got the skill” after trying her hand at traditional textile work during a visit to west Wales on Tuesday (Feb 3).

The royal spent the day meeting staff and apprentices at two well-known manufacturers – Melin Tregwynt in Pembrokeshire and Hiut Denim in Cardigan – highlighting the region’s long-standing reputation for craftsmanship and small-scale, high-quality production.

Stitching and mending at historic mill

At Melin Tregwynt, a family-run woollen mill that now operates as an employee-owned trust, the princess was guided through each stage of production, from weaving to finishing.

In the quality control room she was invited to mend a blanket using a needle and thread, carefully repairing the fabric under the watchful eye of experienced staff.

Paula Harding, who has worked at the mill for more than a decade, praised her technique, saying: “She did it right – and she didn’t go through the other side. That’s skill. She’s got the skill.”

Laughing, the princess told workers: “You make it look so easy,” adding that the craft was clearly “a labour of love”.

She asked questions about the history of the business, which has produced Welsh-designed blankets and throws for more than a century, and spoke with several generations of the same families who have worked at the mill.

‘Made in Wales’ denim

Later, the princess travelled to Hiut Denim, the Cardigan-based firm credited with bringing jeans manufacturing back to the town after large factories closed in the early 2000s.

The company now focuses on small-batch, premium denim and employs skilled cutters and machinists locally.

During a tour of the factory floor, the princess tried cutting out a pair of jeans and helped stitch a “Made in Wales” label onto a finished pair that staff said would be presented to the Prince of Wales.

“He will love those,” she replied.

She joked that there was “no pressure” when handed the cutting tools and said she enjoys making clothes herself, admitting the most adventurous project she had attempted was sewing a pair of pyjamas.

The royal also stopped to greet Barney, the factory’s English cocker spaniel, drawing smiles from staff.

Meeting well-wishers

Crowds gathered outside both sites to catch a glimpse of the visitor, with the princess spending time chatting with families and children before moving on.

The visit forms part of ongoing efforts by the royal household to showcase traditional industries and skilled manufacturing across the UK, with west Wales’ textile sector recognised as a key part of the region’s heritage and economy.

For workers at both businesses, the message was simple: the spotlight on locally made products and homegrown skills was just as important as the royal presence itself.

 

Continue Reading

Crime

Man spared jail after admitting child abuse image offences

Published

on

Police seized devices after intelligence linked Pembrokeshire address to illegal cloud storage accounts

A 23-YEAR-OLD Pembrokeshire man has avoided immediate custody after admitting making and possessing indecent images of children, including extreme bestiality material.

Ryan Beale, aged 23, appeared at Swansea Crown Court for sentencing this week.

At his first hearing, before magistrates on December 31, he entered guilty pleas and being granted conditional bail.

The court heard the case followed an intelligence-led police investigation linking Beale to a Dropbox account suspected of storing illegal material. Officers executed a warrant at his home on December 18.

During his arrest, Beale told officers: “I don’t use Dropbox,” claiming his email and Google accounts had been compromised.

However, police seized his mobile phone and computer equipment. A forensic examination found the email address connected to the Dropbox account stored on his device. Although the account had also been accessed from overseas locations, including Nigeria, investigators were satisfied it was controlled by Beale and linked to a larger cloud storage account containing significant volumes of illegal content.

Officers discovered 120 Category A images, 36 Category B images and 29 Category C images.

Category A represents the most serious level of abuse.

The material included extreme and disturbing bestiality content. Further Category C images were also located within the Dropbox account.

Two identified victims depicted in the images were girls aged nine and eleven.

Beale initially denied the allegations but later admitted the offences.

Passing sentence, at Swansea Crown Court on Tuesday (Feb 3) the His Honour Geraint Walters said: “This was not an innocent pastime. Every time an adult views that image, a child is still being abused.”

He added that an early guilty plea had spared Beale immediate custody but warned the offences would have lifelong consequences.

“The public have no time for anybody doing this,” the judge said. “If you’re doing this, the police will find out. They didn’t knock on your door randomly — they knew what they were looking for.”

Beale was sentenced to eight months’ imprisonment, suspended for two years. He must complete 20 days of rehabilitation activity and pay £300 in prosecution costs.

The court also imposed a Sexual Harm Prevention Order, ordered the forfeiture and destruction of his electronic devices, and placed him on the Sex Offenders Register for ten years.

“If you keep yourself out of trouble, you won’t have to serve that custodial sentence,” the judge told him.

 

Continue Reading

Entertainment

One Night in Dublin returns to the Torch with a brand-new show

Published

on

ONE NIGHT IN DUBLIN is heading back to the stage at the Torch Theatre with a lively new production fronted by renowned Irish singer Danny Muldoon.

Tickets are already selling fast for the feel-good celebration of Irish music, which promises two hours of songs, stories and plenty of craic.

Backed by an award-winning five-piece band, Muldoon leads audiences through a packed set of sing-along favourites including Galway Girl, Tell Me Ma, The Irish Rover, Dirty Old Town, Whiskey in the Jar, The Wild Rover and The Galway Shawl, along with many more well-loved classics.

The show recreates the atmosphere of a bustling Dublin pub, complete with fiddle, whistle, guitars, banjo, bodhrán, accordion and driving drums, transporting the audience straight into “Murphy’s Tavern” for an unforgettable night of live entertainment.

Fans can also expect hits from Irish legends including The Pogues, The Saw Doctors, The Dubliners, The Fureys, Flogging Molly and Dropkick Murphys.

One Night in Dublin comes to the Torch Theatre on Thursday, March 26 at 7:30pm.

Tickets cost £26.50. Visit the theatre website or call the Box Office on (01646) 695267 to book.

 

Continue Reading

Community4 hours ago

Cleddau at heart of major water reforms as ministers promise ‘fundamental reset’

New regulation plan aims to tackle pollution, sewage spills and ageing infrastructure COMMUNITIES along the River Cleddau could see tighter...

Crime6 hours ago

Man caught in hotel sting after trying to meet girl, 13

Laugharne defendant confronted by paedophile hunters at St Clears Travelodge before suspended jail term at Swansea Crown Court A LAUGHARNE...

News6 hours ago

Princess of Wales visits historic Pembrokeshire woollen mill

Catherine the Princess of Wales visited Melin Tregwynt, a historic family-owned woollen mill, today, highlighting the enduring traditions and skills...

Crime22 hours ago

Arrest made after Carmarthen park stabbing investigation

Police thank community and media following public appeal to trace suspect AN ARREST has been made following last week’s stabbing...

Crime22 hours ago

Search continues for attempted murder suspect after Carmarthen park stabbing

Police expand searches across riverbank and woodland as public urged to come forward with information DYFED-POWYS POLICE say their search for...

Community1 day ago

Flood alert issued for Pembrokeshire coast this evening

Pembrokeshire residents are being urged to prepare for possible flooding along the coastline between St Dogmaels, Cardigan and Amroth, after...

News1 day ago

Tributes paid to Pembroke Dock Councillor and former Mayor Pamela George

It is with great sadness that the Pembroke Dock community mourns the passing of Councillor Pamela George. Pamela, affectionately known...

Health2 days ago

Doctor struck off after sexual misconduct findings at Withybush Hospital

Tribunal history reveals medic was removed in 2012 for dishonesty before being allowed back to practise A DOCTOR accused of...

News2 days ago

Policing powers stay with Westminster as devolution debate reignites in Wales

THE UK GOVERNMENT has ruled out handing control of policing and criminal justice to Wales, triggering fresh political debate over...

Climate2 days ago

Ice warning issued as temperatures fall below freezing across Pembrokeshire

Cold snap expected to create hazardous roads and pavements overnight into Monday morning PEMBROKESHESHIRE residents are being urged to take...

Popular This Week