News

AM welcomes rare disease victory

Published

12 years ago

January 6, 2014

REBECCA EVANS AM, Assembly Member for Mid and West Wales, has welcomed the launch of the UK’s first strategy to help build understanding of rare diseases and boost research to find and deliver more effective treatment, support and therapies – and hailed the promise of a Wales delivery plan as a victory for rare disease campaigners in Wales.

In 2009, a Council of the European Union recommendation on action in the field of rare diseases was adopted unanimously by all Member States of the European Union, including the UK – representing a major milestone in the field of rare diseases.

The move finally recognised that rare diseases are a health priority, and acknowledged that cooperation and coordination across Member States in rare diseases was not only logical and meaningful in terms of using available resources in the best way, but would also have an enormous impact on quality of life and survival for millions of people all over Europe.

Key to the EU recommendation was that each Member State should have a plan or strategy in place by the end of 2013 to facilitate research and to improve access to care, treatment and support for patients affected by rare diseases.

Mrs Evans, who has long championed rare diseases in the National Assembly for Wales, said:

“This is excellent news for people affected by rare diseases.

“Rare diseases are not rare. There are over 6,000 known rare diseases, and a rare disease is defined as any condition affecting fewer than 5 in 10,000 of the general population.

“Rare diseases will affect 1 in 17 people at some point in their lives that’s 175,000 people in Wales.

“People affected by rare diseases can face common problems including access to a timely diagnosis, misdiagnosis, lack of access to information, poor coordination of care, problematic transition from children’s to adult services, poor access to treatment, lack of research, and inequality of provision.”

Key elements of the UK strategy include:

• A clear personal care plan for every patient that brings together health and care services, with more support for them and their families

• Support for specialised clinical centres to offer the best care and support

• Better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment

• Promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases

Mrs Evans is a member of the Assembly’s Health and Social Care Committee and Co-Chair of the Cross Party Group on Disability. She has previously tabled and led a debate on rare diseases at the Senedd.

During the debate, Mrs Evans highlighted the different directions being taken by the Welsh and English health services and argued that it was essential that the rare disease plan delivers for people living with rare conditions and their families in Wales.

She used the debate to call on the Welsh Government to commit to ensuring the development and implementation of a Wales-specific plan for rare diseases in Wales to provide the framework for delivery of a UK strategy.

During the debate, Mrs Evans said that a “commitment to a delivery plan would represent the single most significant step since devolution towards improving support and outcomes for people with rare diseases in Wales. If the Minister takes away only one thing from this debate, I hope it would be that.”

Today, Mrs Evans said: “I am delighted that the Welsh Government has listened to my call. The Health Minister, Mark Drakeford, has just announced that the Welsh Government is working with the NHS and the voluntary sector to develop a specific Wales implementation plan. I look forward to it being delivered early next year.”

Alastair Kent OBE, Chair of Rare Disease UK, which was part of the stakeholder forum that helped shaped the strategy, said:

“Patients and families affected by life limiting rare diseases have often struggled to get a diagnosis and to access services that meet their needs. While the NHS has demonstrated that it is capable of delivering a world class service, the experience of patients has been that this is by no means a universal experience.

“With the development of the UK Strategy for Rare Diseases patients and families can have a clear expectation of what to expect from the NHS, wherever they live in the UK. For the first time the four nations of the UK have come together to recognise and respond to the needs of rare disease patients systematically, structurally and in accordance with the founding principle of the NHS that treatment should be a response to need.

“Turning the UK Strategy’s aims into practical benefits for patients will require hard work and detailed planning. Now, at least, patients can have a clear expectation of what the NHS aspires to provide for them, wherever they live in the UK. This is a huge step forward, and the publication of the Strategy will give hope and comfort to the 3.5 million people affected by rare diseases across the UK.

News

BBC brings election debate to Pembrokeshire College

Published

5 minutes ago

April 9, 2026

Tom Sinclair

Jane Dodds, Rhun ap Iorwerth and Darren Millar faced questions from a live audience in Haverfordwest ahead of the Senedd election

BBC WALES brought its election debate programme to Pembrokeshire College in Haverfordwest on Wednesday night (Apr 8), with three party leaders taking questions from a live studio audience ahead of the Senedd election.

The Your Voice Live: Ask the Leader programme featured Jane Dodds of the Welsh Liberal Democrats, Rhun ap Iorwerth of Plaid Cymru and Darren Millar of the Welsh Conservatives.

Each leader was given around 30 minutes to answer questions from audience members on issues affecting people across Wales, with the event forming part of the BBC’s coverage of the campaign ahead of polling day on Thursday, May 7.

The programme placed Pembrokeshire at the centre of the national political debate, with Haverfordwest chosen as the venue for the first of two special election editions.

A second programme, featuring Welsh Labour, Reform UK and the Wales Green Party, was announced during the broadcast. It is due to air from Llandudno at 8:00pm on Wednesday, April 15.

The Haverfordwest event gave local people the chance to put questions directly to party leaders as the battle for votes intensifies across Wales.

We will publish a fuller report on the main exchanges and what was said on issues affecting Pembrokeshire and west Wales shortly.

The programme is available to view on Iplayer.

News

West Wales haulage firm warns poor roads are hurting growth

Published

26 minutes ago

April 9, 2026

Tom Sinclair

Politicians visiting Frenni say rising fuel costs, weak transport links and a lack of investment are placing increasing pressure on businesses across the region

CONSERVATIVE politicians have warned that poor transport links and rising operating costs are putting increasing pressure on the haulage sector in west Wales, following a visit to leading local road haulier Frenni.

During the visit, Welsh Conservative leader Darren Millar joined Ceredigion Penfro candidates Paul Davies and Samuel Kurtz to meet staff at the company and discuss the challenges facing the industry.

Among the main concerns raised were weak road infrastructure, rising fuel prices, growing business costs and the impact these pressures are having on firms that rely on efficient journey times to stay competitive.

Frenni told the politicians that poor connectivity is making it harder to move goods efficiently, reach key markets and compete with businesses elsewhere in the UK — a problem that is especially acute for haulage operators, whose profitability depends heavily on reliable journey times.

According to the Road Haulage Association, the sector moves around 89 per cent of all goods in the UK, underlining its importance to the wider economy. However, it also faces mounting pressures from fuel costs, wages, insurance, maintenance and regulatory compliance.

The visit also came amid renewed concern over fuel prices. The politicians said businesses in west Wales were already struggling with increased costs and warned that any further rise in fuel duty would place additional strain on hauliers and rural communities.

Darren Millar said: “It was incredibly valuable to hear directly from Frenni about the challenges they face day to day. Time and again, we hear the same message — our road networks are holding businesses back.

“Whether it is delays, poor road conditions or rising fuel costs, the current environment is making it harder than ever to operate. We support the road haulage sector in its calls for action on fuel duty.”

Paul Davies said haulage firms such as Frenni were vital to the economy and deserved stronger backing.

He said: “Hauliers like Frenni are absolutely essential to our economy. They keep goods moving across the country every single day, but they are being squeezed from all sides — from fuel costs to rising wages and wider business pressures. Without action, we risk placing that vital network under real strain.”

A key issue raised during the meeting was the long-standing call to dual the A40, which the politicians described as a crucial freight route linking west Wales with the rest of the country.

Samuel Kurtz said: “For a haulage firm, time is money. The A40 and M4 are a lifeline for us, and without proper investment, companies here are at a clear disadvantage. We need to see real progress and real investment.”

Road safety concerns were also discussed, particularly on the A477, where calls have previously been made for major improvements.

Mr Kurtz added: “Improving the A477 is not just about convenience, it is about safety. Hauliers are on these roads every day, and we need to ensure these routes are safe, resilient and fit for purpose.”

The politicians also said more needed to be done to improve driver welfare, with concerns raised over a shortage of secure parking, rest areas and basic facilities for HGV drivers in west Wales.

Paul Davies said: “Driver welfare is too often overlooked. If we want to support the haulage sector and tackle driver shortages, we need proper facilities, including safe parking, rest areas and access to basic amenities.”

Wider transport concerns were also discussed, including calls for progress on major infrastructure schemes such as the M4 relief road, which supporters say is needed to ease congestion and improve freight movement across south Wales.

The default 20mph speed limit was another issue raised during the visit, with criticism from the politicians that it is increasing journey times and adding to delivery costs.

Samuel Kurtz said: “Hauliers understand the importance of road safety, but a blanket 20mph approach is not working for logistics. It is slowing journeys, increasing costs and making it harder for businesses to operate efficiently.”

Setting out the party’s position, Paul Davies said the Welsh Conservatives would prioritise investment in roads and transport infrastructure.

He said: “We would get Wales moving again by delivering A40 dualling, upgrading the A477 for safety, progressing the M4 relief road, improving facilities for drivers and scrapping the blanket 20mph policy. At the same time, we must recognise the cost pressures facing the sector and back the businesses that keep our economy moving.”

He added: “Frenni is a great example of a hardworking west Wales haulage business playing a vital role in the wider UK economy. These are the businesses that ensure goods reach our shops, homes and industries. With the right support, they can continue to grow, create jobs and keep Wales moving.”

If you want this turned into a more balanced newspaper piece with Labour/Plaid reaction added, I can do that too.

Community

PCSO clocks in after villagers raise speeding fears

Published

2 hours ago

April 9, 2026

Tom Sinclair

HERBRANDSTON residents flagged fast-moving traffic as a key concern, prompting police to carry out speed checks in the village.

Concern over speeding in Herbrandston has prompted a local police response, with PCSO Adam out in the village carrying out speed checks after residents raised the issue through DPP Connect.

Milford Haven and Neyland Police said the concerns emerged after officers signed local people up to the messaging service, which allows residents to share feedback and receive updates from police.

Many of those who responded said speeding through the village was one of their main worries.

In response, PCSO Adam was deployed to monitor traffic and check vehicle speeds.

The move is likely to be welcomed by residents who have grown tired of motorists treating the village like a racetrack.