News

AM welcomes rare disease victory

Published

11 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.

Crime

Begelly man sentenced for carrying metal bar during nightclub fight

Published

3 hours ago

December 23, 2024

Sarah-Jane Absalom

A MAN has been sentenced after approaching a Pembrokeshire nightclub armed with a metre-long metal bar.

Just after 2:30am on July 21, police were called to Main Street, Pembroke, following reports of a large fight involving around 100 people outside ‘Out’ nightclub.

Crown Prosecutor Nia James told Haverfordwest magistrates this week: “Officers were told it was a large fight. They saw Walter Probert, 27, march purposefully towards a parked van.

“The van’s lights were on, and they saw the defendant pull out a long, green metal pole. He took ten steps back towards the nightclub and transferred the pole from one hand to the other.”

Another man approached Probert, removed the pole from his hands, and placed it inside the van.

“Because of the manner in which the pole was used by the defendant, it became an offensive weapon,” added Ms James.

CCTV footage of the incident was shown to magistrates.

Probation officer Julie Norman said Probert had no recollection of the incident.

“He doesn’t remember what he was doing, but he accepts everything that has been said. He was very drunk,” she said.

“He was brought up in the gypsy travelling community and doesn’t have an alcohol issue; he’s just a social drinker. He’s thankful to his friend who took the pole and placed it back inside the van.”

Probert, of the Caravan Site, Kingsmoor Common, Begelly, pleaded guilty to possessing an offensive weapon in a public place. He was represented in court by Mr Tom Lloyd.

“No threats were made by the defendant when he picked it up, but it was a stupid decision,” said Mr Lloyd. “As soon as he was challenged and asked what he was doing, he ceased.”

Probert was sentenced to a 12-month community order, requiring him to carry out 150 hours of unpaid work. He was also ordered to pay £85 costs and a £114 court surcharge. Magistrates imposed a destruction order on the metal bar.

Charity

Set a New Year Challenge and explore Pembrokeshire for animals in 2025

Published

6 hours ago

December 23, 2024

Tom Sinclair

ANIMAL lovers in Pembrokeshire looking to set an exciting goal for 2025 can now sign up for the RSPCA’s fundraising challenges, including the iconic Tour of Pembrokeshire on 24 May 2025.

From scenic bike rides to adrenaline-fueled adventures, the RSPCA is encouraging participants to embrace a challenge that not only benefits their health but also helps animals in need.

Abi Mustard, Events Manager at the RSPCA, said: “If you’re looking for a unique challenge for the New Year, the Tour of Pembrokeshire offers a perfect blend of stunning coastal views, physical endurance, and the chance to make a meaningful impact on animal welfare.”

The Tour of Pembrokeshire is renowned for showcasing some of the most breathtaking routes in Wales, attracting cyclists of all abilities. Participants will navigate challenging climbs, rolling hills, and picturesque landscapes, all while raising crucial funds for the RSPCA’s work in rescuing, rehabilitating, and rehoming animals across Wales.

Abi added: “Every mile cycled and every pound raised makes a difference. You’ll not only experience the beauty of Pembrokeshire but also become part of a dedicated team working to stop animal cruelty and neglect.”

Why Join the RSPCA Tour of Pembrokeshire Challenge?

Personalised support from the RSPCA events team
RSPCA branded cycling jersey once fundraising reaches £50
Access to a dedicated events Facebook group for tips and encouragement
Cheering packs for family and friends on event day

More RSPCA Challenges Across Wales in 2025

Chepstow Half Marathon: 26 January
ABP Newport Wales Marathon: 13 April
Gower Peninsula Challenge: 19–20 July
Snowdon Triple: 18–19 August
Cardiff Half Marathon: 5 October

Whether you’re an experienced cyclist or a first-time fundraiser, the Tour of Pembrokeshire offers an unforgettable experience with a purpose.

To sign up or request a fundraising pack, visit the RSPCA website today and start your journey towards making a difference—for yourself and for animals in need.

Together, let’s make 2025 a year of action, compassion, and achievement.

News

Police close Westfield Pill Bridge over concerns for person’s welfare

Published

6 hours ago

December 23, 2024

Tom Sinclair

FEARS for a person’s safety led police to close Westfield Pill Bridge, near Neyland.

The bridge, on the A477 between Honeyborough roundabout and the Cleddau Bridge, was shut for just over an hour, with drivers advised to seek alternative routes.

The incident took place on Friday evening and was concluded when the person was located safe and well.

A Dyfed-Powys Police spokesperson said: “Dyfed-Powys Police received a call for a concern for the welfare of an individual on Westfield Pill Bridge at around 7:30pm on Friday, December 20.

“The road was closed and reopened at around 8:40pm.

“The individual was located safe and well.”

This is not the first time such an incident has led to a bridge closure.

There have been several previous similar incidents, including on Friday, October 4, 2024, the Cleddau Bridge was closed for about an hour following a call reporting a welfare concern. The closure occurred at around 4:45pm, and the bridge reopened at 5:45pm.

The person involved was taken to the hospital for treatment.

In June, a multi–agency rescue operation unfolded at Neyland Marina after a youth jumped approximately 40 metres from Westfield Bridge into the water below.

Emergency services, including crews from Mid and West Wales Fire and Rescue Service (MAWWFRS) stations in Haverfordwest, Milford Haven, Pembroke Dock, and Carmarthen, were swiftly dispatched to the scene.

According to a spokesperson for MAWWFRS, members of the public were instrumental in rescuing the youth before the arrival of the emergency crews.