News

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

Published

5 years ago

October 27, 2019

Tom Sinclair

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 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.”

Crime

Dyfed-Powys Police pays out hundreds of thousands in compensation claims

Published

21 hours ago

January 5, 2025

Tom Sinclair

NEW figures reveal Dyfed-Powys Police has paid out £324,000 in compensation over the past five years, following nearly 200 claims made by members of the public.

A Freedom of Information requests show a whopping 186 claims were lodged against the force between 2019 and 2024, with compensation payments peaking in 2021/2022 at £138,111. Claims included allegations of unlawful arrest, financial losses, personal injury, and failure in duty of care.

In 2019/2020, 36 claims were made, with nine settled. The following year, 22 claims were lodged, with nine again resulting in payouts. Numbers rose to 38 claims in 2021/2022, with 11 settlements, before dropping slightly in 2022/2023 to 36 claims and eight payouts. However, the most recent figures for 2023/2024 show a significant rise, with 54 claims and seven settlements.

Lucy Parker, a solicitor from JF Law, said: “Claims against police forces highlight the importance of accountability. Issues such as wrongful arrest, assault, and negligence must be addressed seriously.”

Nationally, UK police forces have paid out millions in compensation, with property damage from botched raids cited as a frequent reason.

Dyfed-Powys Police has been approached for comment.

News

Rail passengers in west Wales ‘let down’ by hundreds of train cancellations

Published

21 hours ago

January 5, 2025

Tom Sinclair

RAIL passengers in west Wales are being “let down” following the cancellation of more than 650 Transport for Wales (TfW) trains on routes to Swansea and beyond in just 12 months.

Between October 1, 2023, and September 30, 2024, a total of 654 services were cancelled, impacting key routes to Llanelli, Carmarthen, Pembroke Dock, Fishguard, and Milford Haven. The cancellations have sparked frustration among passengers and raised concerns over the reliability of rail services in the region.

Transport for Wales, which took over day-to-day rail operations from Arriva nearly seven years ago, has faced ongoing criticism for service quality. A Rail User Survey in 2023 revealed that only 72% of passengers were satisfied with TfW services, making it the worst-rated operator in the UK at the time. By comparison, Southern Railway scored 80%.

Recent surveys show some improvements. Between February and September 2024, overall satisfaction rose to 85%, with punctuality increasing to 73% and frequency to 66%. However, these numbers remain below national averages, and the situation in west Wales continues to lag behind other regions.

Passengers in west Wales have long expressed frustration over frequent delays and cancellations. One traveller recounted a 60-mile journey from Cardiff Central to Carmarthen that resulted in an overnight stay in Cardiff due to multiple delays and cancellations. Replacement buses offered little reprieve, with onward journeys stretching well into the early hours.

Peredur Owen Griffiths MS, Plaid Cymru’s spokesperson for Transport, criticised the situation, saying: “These statistics show that Welsh passengers are being let down. Historical underinvestment in our rail network and infrastructure has led us to this position. In order to create a Welsh rail network that works for the people of Wales, it’s vital that decisions regarding Welsh rail are made in Wales.”

Mr Griffiths added: “Only Plaid Cymru fights for the devolution of rail infrastructure to ensure we can secure consistent investment in our network and deliver reliable services.”

Despite some recent improvements in customer satisfaction, the sheer scale of cancellations highlights ongoing issues with rail services in Wales, particularly in west Wales where consistent, reliable transport remains a challenge for many commuters and travellers.

Charity

Tributes paid to former Tenby RNLI crew member Stuart Fecci

Published

22 hours ago

January 5, 2025

Tom Sinclair

TENBY RNLI is mourning the loss of former Shore Crew member Stuart Fecci, who passed away recently. Stuart served aboard the Henry Comber Brown lifeboat until a tragic accident in 1988 resulted in the loss of his hand.

Despite the injury, Stuart remained a dedicated supporter of Tenby RNLI. The Fecci family has deep roots with the station, including Stuart’s son Samuel, who raised over £300 by completing the RNLI’s Mayday Mile walk in 2021.

Deputy Coxswain Jon Lewis, Stuart’s cousin who carries the Fecci name through his mother, paid tribute: “The last time I spoke to him, he greeted me in a packed Tudor Square as the larger-than-life character he was and shouted, ‘Coxswain Lewis!’ before continuing to congratulate me.”

Stuart will be deeply missed by the entire community. The thoughts of everyone at the station are with his wife Sally and his family during this difficult time.