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.

Business

Plaid energy policy challenged by Labour after Adam Price interview

Published

23 hours ago

May 24, 2026

Tom Sinclair

LABOUR SAYS MINISTERS MUST EXPLAIN COST AND TIMETABLE FOR PYLON PLANS

PLAID CYMRU’S approach to energy infrastructure has come under scrutiny after Energy Minister Adam Price was challenged over plans to reduce the use of overhead pylons in Wales.

Mr Price defended the Welsh Government’s position during an appearance on BBC Radio Wales’ Sunday Supplement, arguing that communities must have greater confidence in how major grid projects are handled.

Plaid Cymru has pledged to give communities a stronger voice over energy developments and to look more closely at alternatives to overhead transmission lines, including underground cabling where possible.

The issue has become increasingly sensitive in rural parts of Wales, where proposed pylon routes linked to renewable energy schemes have raised concerns about landscape impact, tourism and local consultation.

However, Welsh Labour said the minister had failed to explain when any restriction on pylons would take effect, or who would pay the additional cost of placing cables underground.

A Welsh Labour spokesperson said: “Adam Price keeps saying how clear their manifesto was and yet he won’t say when they’re banning pylons. They won’t say who is paying for the extra cost of undergrounding cables.

“Without certainty, companies won’t invest. That’s thousands of clean, green energy jobs at risk. Plaid need more than a plan to have a plan.”

Labour said the Welsh Government must now set out how its policy would work in practice, including whether it amounts to an outright ban, what exemptions would apply, and how any extra costs would be funded.

The debate highlights the challenge facing ministers as Wales seeks to expand renewable energy generation while addressing public opposition to large-scale grid infrastructure.

Community

Pembroke Fair praised as well-organised community event

Published

24 hours ago

May 24, 2026

Tom Sinclair

HORSES, STALLS AND FAMILY CROWDS RETURN TO MONKTON

FAMILIES, horse owners and visitors turned out in force for Pembroke Fair on Saturday (May 23), with many praising the event as one of the best organised in recent years.

Held at the Community Centre Field in Monkton, the annual fair brought together horse owners, traders and local families for a traditional day centred around horses, ponies, stalls and socialising.

Coloured cobs, heavy horses, ponies and horse-drawn traps attracted attention throughout the day, with many visitors gathering around the field to watch the animals being shown and led around the site.

A variety of stalls selling everything from clothing and ornaments to tack and second-hand goods helped create a lively market atmosphere, while food vendors kept visitors fed throughout the day.

Despite overcast conditions at times, the event remained busy, with many attendees staying for several hours to enjoy the traditional fair atmosphere.

Community members later took to social media to praise the smooth running of the event, with several publicly thanking organiser Charlie Price for his efforts in bringing the fair together.

Comments described the day as “well organised” and praised the welcoming atmosphere, with many saying it was encouraging to see a long-standing local tradition continuing to thrive.

The fair once again brought together members of the travelling community, local residents and horse enthusiasts from across west Wales.

A horse drive was also due to take place on Sunday (May 24), continuing the weekend’s celebrations.

Photo captions:

Traditional gathering: Horses, ponies, horse-drawn carts and market stalls drew crowds to Pembroke Fair in Monkton on Saturday (Pic: Herald).

News

Watchdog criticises health board over £10m GP contract checks

Published

2 days ago

May 23, 2026

Tom Sinclair

A HEALTH board has been criticised by Audit Wales after GP contracts worth more than £10m were awarded without sufficient due diligence checks.

Aneurin Bevan University Health Board allowed a GP partnership associated with eHarley Street Primary Care Solutions to take on eight GP contracts in south-east Wales, with a combined annual value of around £10.1m.

Audit Wales said the board should have carried out greater scrutiny before approving the arrangements, including checks on financial resilience, workforce plans, business risks and the partnership’s ability to manage several practices at once.

However, the watchdog found no evidence of fraud and noted the board was dealing with significant pressure in general practice, including vacant contracts and limited interest from other bidders.

The report said weaknesses in governance and scrutiny contributed to later disruption and uncertainty for patients and staff when problems emerged.

Concerns included financial and workforce pressures, unpaid invoices, and issues relating to tax and pension payments. Some contracts were later handed back, requiring the health board to step in to protect services.

Natasha Asghar MS, Welsh Conservative Shadow Cabinet Minister for Health and Social Care, said the findings were “deeply concerning”.

She said: “Patients and staff were left facing disruption and uncertainty because proper scrutiny was not carried out before these contracts were awarded.

“The Welsh Conservatives believe lessons must be learned to ensure robust checks are in place, protect frontline services and restore confidence in primary care across Wales.”

Aneurin Bevan University Health Board accepted the recommendations and said it had already strengthened its processes.

Audit Wales said the case highlighted the need for stronger checks before GP contracts are transferred, particularly when a single partnership is taking on multiple practices in a short period.