News

AM welcomes rare disease victory

Published

13 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.

Entertainment

Plan your journey to Eisteddfod y Garreg Las

Published

5 hours ago

July 24, 2026

Tom Sinclair

THOUSANDS of visitors are expected to travel to Eisteddfod y Garreg Las from communities across Wales and beyond.

Whether you are arriving by car, bus, train, coach or taxi, planning your journey in advance will help ensure you reach the Maes safely and in good time.

Travelling by car

Drivers should follow the yellow ‘Eisteddfod’ signs, which will direct traffic to the Maes and the free visitor car parks.

The Eisteddfod site at Llantwd is situated a few miles south of Cardigan.

From Fishguard

Follow the A487 north through Newport and continue towards the Maes entrance, following the yellow Eisteddfod signs as you approach the site.

From Narberth or Carmarthen

Leave the A40 at the Penblewin roundabout and take the A478 towards Cardigan.

Continue to the junction with the B4332 at Postgwyn, turn left and travel west for approximately two miles. Follow the Eisteddfod signs, which will direct traffic north from the B4332 before reaching Eglwyswrw.

From Crymych and Boncath

Travel to the junction of the B4332 and A478 at Postgwyn, then continue west and follow the Eisteddfod signs.

From Cardigan and the north

Travel south from Cardigan and follow the yellow Eisteddfod signs to the Maes.

Visitors should use the designated free car parks and must not park on the roadside. Parking restrictions will be in place around the site.

Travelling by bus

Additional bus services will make it easier for visitors to leave the car at home during the Eisteddfod.

TrawsCymru T5

The TrawsCymru T5 service will take passengers directly to the Maes at Llantwd, with regular services operating between Haverfordwest and Cardigan via Fishguard and Newport.

More frequent buses and late-evening services will operate between Fishguard and Cardigan throughout Eisteddfod week.

Service 430

The 430 bus provides a link between Narberth and Cardigan via Crymych.

Thanks to support from Pembrokeshire County Council, the service will operate every day during the Eisteddfod, with all journeys running to and from Narberth.

An additional late-evening bus will leave directly from the Maes at 11.15pm. Passengers travelling onwards will need to change at Cardigan.

The special T5 and 430 timetables can be downloaded from:

https://www.pembrokeshire.gov.uk/bus-routes-and-timetables/planned-bus-service-changes

Travel is free for passengers with an All-Wales Concessionary Bus Pass.

Young people aged 21 and under can travel for £1 per journey, with a maximum daily fare of £3. Passengers aged between 16 and 21 will need a MyTravelPass.

Special Eisteddfod fares are also available from Transport for Wales:

https://traws.cymru/en/catch-the-t5-bus-straight-to-the-eisteddfod

Free shuttle from Cardigan

Visitors can also use Bws yr Arglwydd Rhys, a free shuttle bus operating between Finch Square in Cardigan and the Maes.

The service will run every hour, on the hour, from 7am until midnight.

Travelling by train

Transport for Wales will operate regular free shuttle buses between Carmarthen railway station and the Maes.

Further information about rail services is available at:

https://tfw.wales/ways-to-travel

Visitors can also plan their journeys through Traveline Cymru:

https://www.traveline.cymru

Special coach excursions

Several operators are organising dedicated trips to the Eisteddfod.

Jones Login

Jones Login will operate excursions on Monday, Wednesday and Friday.

The coach will leave Carmarthen at 7.35am, with pick-up points in St Clears, Whitland, Penblewin, Narberth and along the A478.

Information and booking:

https://www.joneslogin.co.uk/Tour/Eisteddfod-Genedlaethol-Cymru

Windy Corner Coaches

Windy Corner Coaches will operate trips on Monday and Friday, as well as a special excursion on the first Saturday for the Super Furry Animals concert.

Information and booking:

https://windycornercoaches.co.uk/day-trips

Midway Motors

Midway Motors will operate services to the Maes every day throughout the Eisteddfod.

The daytime service will depart from:

Tegryn at 10am
Llanfyrnach at 10.05am
Hermon at 10.10am
Crymych at 10.15am
Blaenffos at 10.20am
Boncath at 10.25am
Eglwyswrw at 10.35am

The return journey will leave the Maes at 6pm.

An evening service will also operate, departing from:

Tegryn at 5.15pm
Llanfyrnach at 5.20pm
Hermon at 5.25pm
Crymych at 5.30pm
Blaenffos at 5.40pm
Boncath at 5.45pm
Eglwyswrw at 5.50pm

The evening return journey will leave the Maes at 11pm.

Fares are £5 for adults and £1 for children.

To book, call 01239 831267.

Travelling by taxi

Local taxi and private-hire firms serving the Maes include:

Kyle’s Taxis, H J Taxis Ltd, Tony’s Taxis, Fishguard Taxis, Morgans Private Hire, Letterston Taxi Service, Frank’s Cabs and St David’s Taxis, A2B Minibuses and Taxis, H&S Cab Service, Robins Taxis and Home James.

Visitors are advised to book taxis and coach seats in advance, particularly for late-evening journeys and major Eisteddfod events.

Entertainment

From Sinatra to Bublé as The Story of Swing comes to Milford Haven

Published

6 hours ago

July 24, 2026

Tom Sinclair

MUSIC lovers are invited to take a journey through the golden age of swing when SOS Big Band – The Story of Swing arrives at the Torch Theatre this August.

Presented by award-winning vocalist and world-class trumpet player Gareth John, alongside the acclaimed SOS Big Band, the show celebrates decades of iconic swing and big band music.

Audiences can expect much-loved classics made famous by Bobby Darin, Frank Sinatra, Dean Martin and Sammy Davis Jr, as well as more modern hits associated with Michael Bublé, Robbie Williams, Matt Goss, Paul Anka and Harry Connick Jr.

Renowned for his showmanship and passion for the genre, Gareth brings a natural warmth and energy to the stage, building an easy rapport with audiences wherever he performs.

During his career, he has shared the stage with a number of household names, including The Beautiful South and The Specials.

The production has already received enthusiastic reviews during its tour, with one audience member at the Core Theatre in Solihull describing it as “a brilliant show”.

SOS Big Band – The Story of Swing will be performed at the Torch Theatre, Milford Haven, on Saturday, August 1, at 7.30pm.

Tickets cost £28.50 and can be booked through the Torch Theatre website or by calling the box office on 01646 695267.

News

Pembrokeshire ‘left behind’ as top-quality 5G reaches just one in 100 premises

Published

6 hours ago

July 24, 2026

Tom Sinclair

Henry Tufnell has called for urgent government action, saying unreliable mobile coverage is damaging businesses, tourism and access to essential services

ONLY one per cent of premises in Mid and South Pembrokeshire can access the highest-quality form of 5G from at least one mobile network, according to figures highlighted by the constituency’s MP.

Henry Tufnell has written to the Minister for the Digital Economy calling for an urgent meeting over what he described as a serious lack of investment in mobile infrastructure across West Wales.

In his letter, the Labour MP said the constituency remained far behind the rest of the country in both the availability and reliability of mobile services.

According to Ofcom figures cited by Mr Tufnell, 12 per cent of premises in Mid and South Pembrokeshire cannot receive a usable high-quality 5G signal from any network. That is six times the national average of two per cent.

He also said that only one per cent of premises locally could access “5G Standalone”, the highest-quality version of the technology, from at least one operator. Nationally, the equivalent figure is said to be 86 per cent.

Mr Tufnell said surveys carried out among his constituents showed the effect poor coverage was having on everyday life.

Some 98 per cent of respondents said a lack of mobile signal negatively affected them, while more than three-quarters reported having a poor signal or no signal where they lived.

The MP said unreliable connectivity was affecting residents, businesses and visitors, as well as schools, transport services and healthcare workers such as community nurses.

Mobile coverage problems were not limited to isolated rural areas, he said, with unreliable service frequently reported in Haverfordwest and persistent “not-spots” affecting Tenby during the busy tourist season.

Poor coverage can also prevent people from using banking, payment and parking applications, creating particular difficulties for visitors and businesses during peak periods.

Mr Tufnell has separately contacted VodafoneThree UK and EE about infrastructure in the Tenby and Penally areas.

VodafoneThree has advised him that it plans to upgrade the mast at Slippery Back Lane in Tenby, although the work is not currently expected to be delivered until 2028.

He has also raised concerns about a proposed 20-metre 4G telecommunications mast at Strawberry Lane, Penally.

Planning permission has been granted for the replacement mast, but the previous structure has already been removed and work on the new installation has yet to begin.

Mr Tufnell said he had written to EE in April seeking clarification about when the mast would be installed, but had not received a response by the time of his latest correspondence.

He has now asked the Government to discuss what support can be provided to accelerate the delivery of reliable mobile infrastructure across the constituency.

Mr Tufnell said: “West Wales cannot continue to be left behind. We need high-quality, reliable digital infrastructure across the whole of Pembrokeshire.

“This is not simply an inconvenience. Poor mobile coverage is affecting residents, local businesses, public services and the tourism industry.”