News

AM welcomes rare disease victory

Published

10 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.

News

Withyhedge Landfill faces political allegations and regulatory enforcement

Published

4 hours ago

April 19, 2024

Tom Sinclair

STEPHEN CRABB MP has vociferously criticised the Welsh Labour Government for its management of the Withyhedge Landfill in Pembrokeshire, claiming it has turned the area into a “dumping ground” for waste from across Wales. Mr. Crabb, supported by Paul Davies MS, alleges that substantial lorries deliver waste daily to the site, causing significant distress to local residents. The MP has repeatedly written to the First Minister, demanding immediate intervention, yet claims to have received no response.

Compounding the controversy, Mr. Crabb highlighted a substantial £200,000 donation to Vaughan Gething’s recent election campaign from the landfill’s owner, questioning the impartiality of regulatory practices. Despite ongoing political efforts, Mr. Crabb asserts that resolution lies solely with the Welsh Government, which has the ultimate authority to address these grievances.

Meanwhile, Natural Resources Wales (NRW) has escalated its enforcement actions against the site’s operators, Resources Management UK Ltd (RML), amid persistent community complaints about odour and gas emissions. A recent Regulation 36 Enforcement Notice demands a series of remedial actions by RML, with deadlines stretching into May 2024. These measures focus on improving the site’s gas management infrastructure and capping exposed areas to mitigate odour issues.

Huwel Manley, Head of South West Operations at NRW, expressed understanding of the community’s frustration, emphasizing the urgency of the required actions. “We are committed to ensuring RML Ltd. deliver these actions rapidly and effectively. Continued non-compliance will lead to further measures, potentially including a suspension of the environmental permit,” stated Mr. Manley.

Pembrokeshire County Council, represented by Chief Executive Will Bramble, also voiced disappointment over the ongoing issues, affirming full support for NRW’s stringent enforcement steps. The Council and NRW are working closely to monitor the situation and have encouraged the public to report any odour incidents promptly to aid in effective resolution.

As the deadline approaches, all parties involved are under increasing pressure to demonstrate tangible improvements and ensure the health and well-being of Pembrokeshire residents are prioritised.

News

Police issue update on the search for Luke, missing from Pembroke Dock

Published

4 hours ago

April 19, 2024

Tom Sinclair

POLICE have made the difficult decision to end the search for Luke, following a joint decision by all the agencies involved.

The police said: “After careful consideration of all the information and expert advice that has been made available to us, a joint decision has been made by all agencies involved that the search for Luke will now conclude and will consist of intelligence led enquiries in the coming days.

“Whilst this is an extremely difficult decision to make, we are satisfied that we have done absolutely everything we possibly can to try and locate Luke. His family have been informed of this decision and our thoughts remain with them at this difficult time.

“I would also like to reassure the public that in addition to the searches that have taken place at the estuary, a team of Police Officers have been conducting extensive enquiries in Pembroke Dock since Luke was reported missing.”

Meanwhile the family has made a heartfelt plea for any information that might help trace his last known movements.

Emma Dewhurst has issued an urgent appeal for information that could help track her nephew Luke’s whereabouts, last seen in the early hours of Saturday morning. Describing Luke as “jovial, kind, soft, and timid,” she reflects on his vibrant personality and gentle nature, noting his resilience and determination to push forward in life. “He is strong. He didn’t give up easily and kept going in his life,” she affirmed.

The family is reeling from the shock of Luke’s sudden disappearance. “We are all so shocked and upset,” Emma stated. “It’s profoundly distressing.”

In an effort to find Luke, his father has made the long journey from the north of England to Pembrokeshire. The emotional toll is evident, as Emma revealed, “His dad is devastated, and my mum [his grandmother] is in pieces.”

Luke was last recorded by CCTV at 6am, four hours after he left his accommodation. Emma is desperately calling on residents to review their CCTV or doorbell footage, hoping for any clue that might explain his movements during those critical missing hours. “Where has he been in that four hours?” Emma implored. “We need to fill these gaps to piece together the facts.”

She recalls Luke’s last day before he vanished, spent with his mother, ending with future plans unfulfilled. “It isn’t in his nature to just disappear,” she said. “We can’t give up. We all love him, miss him, and want him back safely.”

Emma also expressed a poignant message for Luke, should he be out there, feeling unable to come home: “If you don’t want to come home, at least reach out to someone. Let us know you are okay. That’s what my brother would want.”

If you have any information on Luke’s last known whereabouts, please contact Dyfed-Powys Police at 101, email [email protected], or reach out online at https://orlo.uk/RlB5o. For those wishing to remain anonymous, you can contact the charity Missing People at www.missingpeople.org.uk.

News

Labour promises ‘most significant investment in Britain’s ports in a generation’

Published

1 day ago

April 18, 2024

Tom Sinclair

LABOUR has said this week that it will “Build it in Britain” with the most significant investment in Britain’s ports in a generation, as part of Green Prosperity Plan to support the creation of 650,000 good jobs across the country.

A Labour Government will “Build it in Britain” Keir Starmer said on Thursday, as he visited the North East of England to highlight Labour’s plans to deliver the most significant upgrade of Britain’s ports in a generation.

Visiting a port in the North East, Labour Leader Keir Starmer, Shadow Chancellor Rachel Reeves, and Shadow Energy Secretary Ed Miliband will set out how Labour’s £1.8 billion investment in Britain’s port infrastructure will help crowd billions more of private sector investment into the UK’s energy industry.

Labour’s announcement comes after Jo Stevens, Shadow Secretary of State for Wales, visited the Port of Milford Haven in Pembrokeshire last month alongside with Henry Tufnell, Labour’s parliamentary candidate for Mid and South Pembrokeshire, to learn more about the port’s operations and challenges.

After the visit, Shadow Welsh Secretary Jo Stevens said: “Upgrading our ports, like this one here in Milford Haven, can help us seize the golden opportunity we have to become a world leader renewable energy, delivering cheaper bills and the jobs of the future.

“But the Conservative government is holding Wales back, with narrow-minded, poorly run investment schemes that leave us lagging behind international competitors.

“A UK Labour government will switch on GB Energy to invest in projects that can secure our lead in floating offshore wind, unlocking the jobs and investment that the Tories have left to languish.”

Henry Tufnell, Labour’s candidate in this year’s General Election, added: “Pembrokeshire’s first Labour MP, Desmond Donnelly, was instrumental in the creation of the Port of Milford Haven, transforming Pembrokeshire’s economic fortunes. Today, as in the 1950s, we face a crossroads. We must put our county at the forefront of a new Labour Government’s industrial strategy to build it in Britain.

Labour’s Green Prosperity Plan will secure our energy supply, develop industry, and create good well paid jobs right here in our county. We don’t want the young people of Pembrokeshire to feel they must leave their home county to get on in life. We want to provide opportunity here, and we want to provide it now.”

Labour’s plan for ports will help reverse fourteen years of industrial decline under the Conservatives and support domestic manufacturing across the country. The pledge is funded through Labour’s Green Prosperity Plan, which includes a proper windfall tax on the oil and gas giants making record profits, to fund investment in British industries.Keir Starmer’s announcement comes as Labour confirms that its Green Prosperity Plan will help support the creation of up to 650,000 good jobs in Britain’s industrial heartlands, including here in Pembrokeshire, by crowding billions of private investment into industries such as Britain’s nuclear, steel, automotive, and construction industries.

The last Labour government led the way on upgrading Britain’s ports, providing funding for the development of port sites to support offshore wind turbine manufacturing. This industrial advantage has been squandered after fourteen years of the Conservatives, with recent research showing the UK could have created almost 100,000 more jobs in the wind industry if it had followed Denmark’s example in recent years and built up domestic supply chains in clean energy.

Speaking ahead of the visit, Labour Leader Keir Starmer outlined the choice facing millions of voters: continued industrial decline after 14 years of Conservative rule, or national economic renewal with Labour, saying:“The legacy of fourteen years of Conservative rule is Britain’s industrial strength reduced to the rubble and rust of closed-down factories. They have let good jobs go overseas and done nothing about it, and every community has paid the price.

“A Labour government will reindustrialise Britain – from the biggest investment in our ports in a generation, to a British Jobs Bonus to crowd billions of investment into our industrial heartlands and coastal communities.“

The wealth of Britain was once built on a bedrock of industrial jobs that offered security and a good wage. By investing in Britain’s homegrown energy sector, we can rebuild this dream for the twenty-first century- good jobs, higher wages, and the pride that comes from good work for all.”Through policies such as Great British Energy, the National Wealth Fund, and the mission for Clean Power by 2030, a Labour government will invest in technologies like floating offshore wind, hydrogen, nuclear, and carbon capture and storage, which will help secure Britain’s energy independence.

This will create a new generation of skilled jobs in growing industries, which will offer people good wages, give confidence in their job security, and provide them with opportunities to progress. This policy is part of Labour’s Green Prosperity Plan, to cut energy bills for families, make Britain energy independent, and rebuild the strength of British industry.

This historic investment in working people and their communities is the only way out of the high energy bills, energy insecurity, and the doom loop of low growth, high taxes and crumbling public services under Rishi Sunak’s Conservatives.Commenting on Labour’s landmark plan to invest in Britain’s port infrastructure, Shadow Energy Secretary Ed Miliband MP said: “Making Britain a clean energy superpower requires flourishing national ports. Whilst the Conservatives are letting other countries plunder jobs that could be ours here in Britain, Labour has a plan to help win the race for the industries of the future.“

This is what Labour’s Green Prosperity Plan will do for every community in Britain – slash energy bills, create good jobs, boost our national energy independence, and help to tackle the climate crisis.”