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.

Health

Phone calls to reduce GP visits for 42% of patients this winter

Published

5 hours ago

November 13, 2024

Tom Sinclair

NEW research from the Royal Voluntary Service has shown that a simple phone call could significantly impact well-being, reducing GP visits by 42% among patients who receive regular telephone support.

The charity urges those feeling isolated this winter, particularly the elderly, to use telephone support services as a way to improve health and free up GP appointments, potentially reducing waiting times. It is estimated that if people experiencing loneliness in later life reduced their GP visits by just one appointment a year, this could free up 588,000 appointments annually.

As winter approaches, the Royal Voluntary Service reports that isolation can sharply increase, especially for adults over 75, with nearly half (47%) of people in this age group feeling lonelier in the colder months. Among those who live alone, one in six say they feel forgotten during winter, and 20% report having no one to turn to for emotional support.

In addition to loneliness, older generations face several winter worries, including increased heating costs, cited by 55% of respondents, and reduced ability to go out, which 29% said they dreaded as winter sets in.

To address these challenges, Royal Voluntary Service has launched the Stay Safe, Warm and Well campaign in partnership with Yakult. The campaign provides a guide for practical and emotional winter preparation, encouraging sign-ups for telephone support services and offering access to the Virtual Village Hall online community for events and activities. Practical advice on money-saving and energy-saving tips is also available through the guide.

Royal Voluntary Service Ambassador Elaine Paige, who has herself made support calls for the charity, described the positive impact these calls can have. “A warm, friendly phone call can transform someone’s day. Some conversations leave you smiling long after the call ends—something we could all use, especially in winter. For those facing the season alone, there are amazing people ready to remind you that you’re not alone,” she said.

The charity’s support services match volunteers with individuals across the UK for friendly chats, reducing isolation and boosting mental health. Catherine Johnstone CBE, Chief Executive of Royal Voluntary Service, said: “The feedback that conversations with volunteers are helping people to visit their GP less is testament to the value of connection.”

Yakult Marketing Manager Reshma Patel added: “Our research with Royal Voluntary Service shows that one in four adults over 75 feel they’d benefit from practical and emotional support over winter. We are committed to helping people access the Stay Safe, Warm and Well guide to support their overall well-being.”

Crime

Welsh shop workers face ‘surge in shoplifting linked violence and abuse’ says union

Published

5 hours ago

November 13, 2024

Tom Sinclair

A NEW survey by retail trade union Usdaw has revealed disturbing figures on the abuse, threats, and violence endured by Welsh shop workers, with incidents increasingly linked to shoplifting. Released during Respect for Shop Workers Week, which runs from November 11 to 17, the statistics highlight a troubling trend that is impacting thousands of retail employees.

Usdaw’s survey, based on responses from over 4,000 retail staff, shows that in the past year:

69% experienced verbal abuse.
45% were threatened by customers.
17% were assaulted.

Usdaw General Secretary Paddy Lillis commented on the findings, saying: “Shop workers deserve far more respect than they receive. These reports from Welsh retail staff make grim reading. It is shocking to see over two-thirds of our members subjected to abuse, threats, and violence. Seven in ten of these incidents are related to theft, much of it tied to addiction and organised crime.”

Usdaw’s survey suggests that shoplifting is increasingly becoming a flashpoint for violence. Many shop workers report encountering hardened criminals who appear to steal goods “to order” or to fund addictions. According to the union, incidents are on the rise across Wales, with police-reported shoplifting up by 33% in the past year.

Usdaw member testimonies paint a vivid picture of the dangers faced on the shop floor:

One respondent described being “spat at, pushed against a wall, punched, and threatened with a knife.”
Another reported that, after refusing to sell alcohol, they were told to “F**k off” and threatened with a beating by a group of five.
Others spoke of being punched, spat on, and verbally abused, with threats that often left lasting emotional scars.

New measures on the horizon

Usdaw has been calling for greater legal protection for retail workers for years, and it appears these calls are finally being heard. The recent Crime and Policing Bill, announced in the King’s Speech, proposes to:

End the £200 threshold for prosecuting shoplifters, which has been a source of frustration for retailers.
Introduce town centre banning orders for repeat offenders.
Allocate funding for tackling organised shoplifting and increase police presence in shopping areas.

“We welcome these new measures and hope they will provide much-needed protection,” said Mr. Lillis. “After 14 years of neglect under successive Tory governments, we are encouraged by the steps the new Labour government is taking to address the retail crime epidemic.”

As Christmas approaches—a time when retail crime tends to peak—Usdaw is urging the public to “respect shop workers” and remain calm as stores become busier.

Usdaw, which represents around 360,000 members, primarily in retail, launched its Freedom From Fear Campaign to tackle the growing issue of violence against shop workers. The final results of the 2024 survey are expected in March 2025.

Charity

Milford Haven RNLI celebrates heartfelt donation from Neyland Ladies Choir

Published

5 hours ago

November 13, 2024

Tom Sinclair

MILFORD HAVEN RNLI Fundraising Group received a generous donation of over £1,000 from Neyland Ladies Choir this October, marking a touching tribute to Mrs. Dorothy Beckett, one of the RNLI’s longest-standing supporters.

The Neyland Ladies Choir held a special concert at St. Mary’s Church on Waterloo Road, Hakin, to celebrate Dorothy Beckett’s 90th birthday. A lifelong supporter of the Royal National Lifeboat Institution (RNLI), Dorothy has played a crucial role in lifeboat fundraising in the Milford Haven area, dating back to the 1970s. She was instrumental in establishing the Hakin Point RNLI fundraising group, which has raised over £500,000 to support the RNLI’s lifesaving work.

The concert’s proceeds were presented in a moving ceremony at Bethesda Baptist Church in Neyland. Accepting the donation on behalf of the RNLI were Steve Lewis, Chairman of the fundraising group, and Thomas Kehoe, Deputy Coxswain of the Angle Lifeboat.

Adding to the evening’s celebrations, Alice Coleman, RNLI Community Manager, presented Dorothy with the Long Service Medal, recognizing her fifty years of dedication to the institution. This award, given by the RNLI, honors Dorothy’s unwavering commitment to saving lives at sea.

“Thank you, Neyland Ladies Choir and Dorothy Beckett,” said the RNLI in a heartfelt message to the community. “Your support and dedication mean the world to us.”

The Milford Haven RNLI Fundraising Group encourages supporters to share and spread the word, hoping that Dorothy’s legacy inspires continued community support.