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AM welcomes rare disease victory

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disease victoryREBECCA 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.

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Crime

Mother admits to killing seven-year-old son in Haverfordwest

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A mother has admitted to the manslaughter of her seven-year-old son at their home in Haverfordwest, citing diminished responsibility.

Papaipit Linse, 43, appeared at Swansea Crown Court on Friday (Nov 22), where she denied murder but pleaded guilty to manslaughter in connection with the death of her son, Louis Linse. Prosecutor Caroline Rees KC confirmed the manslaughter plea would be accepted, stating it “did not come as a surprise” to the prosecution.

The incident occurred on 10 January when police were called to a property on Upper Market Street. Louis was rushed to Withybush General Hospital but tragically died shortly afterwards.

During the hearing, Linse, who spoke only to confirm her name and enter her pleas, was informed that she would be sentenced on 13 December. Judge Paul Thomas KC described the case as “clearly a very sensitive as well as a very tragic case.”

The court was told that Linse is currently receiving treatment at the Caswell Clinic, a mental health facility in Bridgend. Psychiatric evidence is expected to be presented during the sentencing hearing to provide further insight into the circumstances surrounding the case.

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Community

Council warns of icy conditions as temperatures drop

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ROAD users in Pembrokeshire are being urged to exercise caution tonight as temperatures are forecast to dip below freezing.

Pembrokeshire County Council has announced that road surface temperatures could reach as low as -2°C, with the possibility of sleet or snow on higher ground. In response, precautionary salting of the county’s primary routes will be carried out this evening and overnight.

A spokesperson for the council said: “Road users are advised to take care if travelling on untreated roads.”

Motorists are reminded to plan ahead and drive carefully, particularly in areas that may not have been treated.

Stay tuned to The Herald for updates on road conditions and weather warnings.

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Community

Stallholders wanted for Milford Haven Christmas Market

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MILFORD HAVEN BUSINESS CIRCLE is calling for stallholders to join the town’s festive Christmas Market, set to bring holiday cheer on Friday, December 6, and Saturday, December 7, 2024.

The market will take place at the Lower Charles Street Car Park, promising a vibrant mix of stalls and attractions. Organizers are seeking a variety of vendors, including those offering gifts, children’s toys and games, food, cakes, flowers, and more.

There’s also an open invitation for someone with small children’s rides to add to the festive fun. A highlight of the event will be the Grinch’s Grotto, offering an entertaining twist to this year’s celebrations.

If you’re interested in having a stall, contact the Milford Haven Business Circle via email at [email protected] for more information.

Mark your calendars and join the excitement as Milford Haven celebrates the season in style!

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