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

Welsh Lib Dems urge First Minister to return dodgy donation

Published

6 hours ago

May 2, 2024

Tom Sinclair

THIS week in the Senedd, the Welsh Liberal Democrats have urged the First Minister to return the £200,000 donation he received from a company linked to environmental crimes.

Speaking to the Senedd on Wednesday, party leader Jane Dodds MS urged FM Vaughan Gething to return money donated to his campaign by Dauson Environmental, a refuse and recycling business owned by David John Neal.

Mr Neal received a 3-month suspended prison sentence in 2013 for illegally dumping waste at a conservation site on the Gwent levels.

His companies Atlantic Recycling and Neal Soil Suppliers were also prosecuted and given fines and costs of £202,000.

Then in 2017, Mr Neal was given another suspended sentence of 18 weeks, with fines and costs of £230,000 after failing to remove the waste.

The Welsh Lib Dems have called on the FM to return the donation, as part of wider calls for a shift away from the influence of “big money” in Welsh politics.

Commenting, the Leader of the Welsh Liberal Democrats Jane Dodds MS said:

“This entire episode has casted a dark shadow upon Welsh democracy and has rightfully led to many questioning the integrity of Vaughan Gething’s leadership campaign and the way our democracy works here in Wales.

Unfortunately for many of us this is hardly surprising, as our political system has been broken for quite some time now.

A system that empowers the elite donor class whilst simultaneously shutting out the voice of the voter is a perversion of democracy itself.

This is why our wider goal must be to remove the influence of ‘big money’ from Welsh politics once and for all.

We cannot have another government that prioritises the interests of its financial benefactors over those of the Welsh people.

We need to take a firm stance in rooting out the influence of cash in Welsh politics, for the sake of our communities we must start prioritising their interests and needs instead of having more self-serving politicians.”

News

Council seeking legal advice to address Withyhedge enforcement

Published

6 hours ago

May 2, 2024

Tom Sinclair

PEMBROKESHIRE County Council says it has sought legal advice and is contemplating legal proceedings against Withyhedge Landfill operators RML, in regards to the ongoing odour issues at the site.

The Council intends to ask the Court for an injunction requiring RML to abate the public nuisance odour arising from the landfill. Failure to comply with the injunction would be contempt of court, which carries a penalty of up to two years’ imprisonment and unlimited fine.

Following significant work undertaken by RML the Authority is disappointed that the problem has not been resolved and residents continue to be impacted by the odour.

Working in collaboration with Natural Resources Wales (NRW) and Public Health Wales (PHW), we fully appreciate that the communities affected cannot tolerate this any longer.

NRW announced that the first set of deadlines for the completion of actions to tackle the ongoing odour issues at Withyhedge Landfill have been met, one week on following the issuing of further enforcement action on 18th April.

This will be closely monitored by NRW to ensure the operator complies with all the actions set out in Notice by 14 May.

It was deemed appropriate to wait until the operator had carried out mitigation to comply with the enforcement requirements by NRW prior to considering this additional action.

To that end, on 26th April 2024, the Council served RML with a letter of claim and invited them to give legally binding undertakings to abate the odour nuisance or face legal proceedings. The Council also asked for disclosure of documents relevant to the proceedings, including records of waste brought in or removed from the landfill.

The Council has given RML until 14th May 2024 to respond to its letter of claim. This aligns with the current deadline set by NRW under its enforcement notice.

Pembrokeshire County Council Chief Executive Will Bramble welcomed the move. He said: “We are extremely disappointed that RML has not delivered the necessary action to stop the completely unacceptable smells from the site.

“We fully support the additional enforcement action being taken by NRW and continue to work closely with them to do all in our power to correct the situation.

“Our intention to ask the Court for an injunction requiring RML to stop the odour nuisance arising from the landfill, is another part of our collaborative approach. The smell from Withyhedge is having a major impact on residents and visitors. This situation has gone on too long and it is unacceptable.”

News

Beautiful, funny and lovely: Family pay tribute to Sian Batchelor

Published

9 hours ago

May 2, 2024

Tom Sinclair

THE family of a woman has paid tribute to a “beautiful, funny, lovely person.”

Sian Batchelor, aged 32, was found on a beach near Pennar, Pembroke Dock on Tuesday evening, April 30^th, 2024.

Her family has issued a statement to say: ‘We are devastated by our loss. Sian was a beautiful, funny, loving person. We will treasure the good times we had with her.

“We would now like time to grieve and would ask to be given privacy in which to do so.”

The circumstances surrounding Sian’s death are being investigated and police would like to hear from anyone with information, sightings of Sian or contact from Sian, between Thursday April 25 to Tuesday April 30.

Police can be contacted either online at: https://bit.ly/DPPContactOnline, by emailing [email protected], or by calling 101. If you are deaf, hard of hearing, or speech impaired text the non-emergency number on 07811 311 908.

Quote reference: DP-20240430-284