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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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Health

Resident doctors in Wales vote to accept new contract

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RESIDENT doctors across Wales have voted to accept a new contract, with 83% of those who took part in a referendum backing the agreement, according to BMA Cymru Wales.

The contract includes a four per cent additional investment in the resident doctor workforce and introduces a range of reforms aimed at improving training conditions, wellbeing and long-term workforce sustainability within NHS Wales. The BMA says the deal also supports progress towards pay restoration, which remains a central issue for doctors.

Key changes include new safeguards to limit the most fatiguing working patterns, measures intended to address medical unemployment and career progression concerns, and reforms to study budgets and study leave to improve access to training opportunities.

Negotiations between the BMA’s Welsh Resident Doctors Committee, NHS Wales Employers and the Welsh Government concluded earlier this year. Following a consultation period, a referendum of resident doctors and final-year medical students in Wales was held, resulting in a clear majority in favour of the proposals.

Welsh Resident Doctors Committee chair Dr Oba Babs Osibodu said the agreement marked a significant step forward for doctors working in Wales.

He said: “We’re proud to have negotiated this contract, which offers our colleagues and the future generation of doctors safer terms of service, fairer pay, and better prospects so that they can grow and develop their careers in Wales.

“This contract will help to retain the doctors already in training, and also attract more doctors to work in Wales, where they can offer their expertise and benefit patients.”

Dr Osibodu added that the BMA remains committed to achieving full pay restoration and acknowledged that challenges remain for some doctors.

“Whilst this contract sets the foundations for a brighter future for resident doctors in Wales, we recognise that there are still doctors who are struggling to develop their careers and secure permanent work,” he said. “We need to work with the Welsh Government and NHS employers to address training bottlenecks and underemployment.”

The Welsh Government has previously said it recognises the pressures facing resident doctors and the importance of improving recruitment and retention across NHS Wales, while also highlighting the need to balance pay agreements with wider NHS funding pressures and patient demand.

The new contract is expected to be phased in from August 2026. It will initially apply to doctors in foundation programmes, those in specialty training with unbanded rotas, and new starters, before being rolled out to all resident doctors across Wales.

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Crime

Swansea man jailed for online child sex offence dies in prison

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A SWANSEA man who was jailed earlier this year for attempting to engage in sexual communication with a child has died while in custody.

Gareth Davies, aged 59, of the Maritime Quarter, was serving an 18-month prison sentence after being convicted in May of sending sexually explicit messages to what he believed was a 14-year-old girl. The account was in fact a decoy used as part of an online safeguarding operation.

The court heard that Davies began communicating with the decoy between November and December 2024 and persistently pursued the individual, later attempting to arrange a face-to-face meeting. He was arrested after being confronted by the decoy operators.

Davies had pleaded not guilty but was convicted following a trial. At the time of sentencing, police described the messages as extremely concerning and said his imprisonment was necessary to protect children.

It has now been confirmed that Davies died at HMP Parc on Wednesday (Nov 27) while serving his sentence.

The Prisons and Probation Ombudsman has launched an independent investigation into the death, which is standard procedure in all cases where someone dies in custody. No cause of death has been released at this stage.

A coroner will determine the circumstances in due course.

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Farming

Welsh Conservatives warn climate plans could mean fewer livestock on Welsh farms

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THE WELSH CONSERVATIVES have challenged the Welsh Government over climate change policies they say could lead to reductions in livestock numbers across Wales, raising concerns about the future of Welsh farming.

The row follows the Welsh Government’s decision, alongside Plaid Cymru and the Welsh Liberal Democrats, to support the UK Climate Change Committee’s Fourth Carbon Budget, which sets out the pathway towards Net Zero greenhouse gas emissions by 2050.

The Carbon Budget, produced by the independent Climate Change Committee (CCC), states that meeting Net Zero targets will require a reduction in agricultural emissions, including changes to land use and, in some scenarios, a reduction in livestock numbers.

During questioning in the Senedd, the Welsh Conservatives pressed the Deputy First Minister and Cabinet Secretary for Climate Change and Rural Affairs on whether the Welsh Government supports reducing livestock numbers as part of its climate strategy.

Speaking after the exchange, Welsh Conservative Shadow Cabinet Secretary for Rural Affairs, Samuel Kurtz MS, said the Welsh Government could not distance itself from the implications of the policy it had backed.

Mr Kurtz said: “By voting in favour of these climate change regulations, Labour, Plaid Cymru and the Liberal Democrats have signed up to the UK Climate Change Committee’s call to cut livestock numbers in Wales, and they cannot dodge that reality.

“The Deputy First Minister’s smoke-and-mirrors answers only confirm what farmers already fear: that Labour, along with their budget bedfellows in Plaid and the Lib Dems, are prepared to sacrifice Welsh agriculture in pursuit of climate targets.”

He added that the issue came at a time of growing pressure on the farming sector, pointing to uncertainty over the proposed Sustainable Farming Scheme, the ongoing failure to eradicate bovine TB, nitrogen pollution regulations under the Nitrate Vulnerable Zones (NVZs), and proposed changes to inheritance tax rules affecting family farms.

The Welsh Government has repeatedly said it does not have a target to forcibly reduce livestock numbers and has argued that future emissions reductions will come through a combination of improved farming practices, environmental land management, and changes in land use agreed with farmers.

Ministers have also said the Sustainable Farming Scheme, which is due to replace the Basic Payment Scheme, is intended to reward farmers for food production alongside environmental outcomes, rather than remove land from agriculture.

The UK Climate Change Committee, which advises governments across the UK, has stressed that its pathways are based on modelling rather than fixed quotas, and that devolved governments have flexibility in how targets are met.

However, farming unions and rural groups in Wales have warned that policies focused on emissions reduction risk undermining the viability of livestock farming, particularly in upland and marginal areas where alternatives to grazing are limited.

The debate highlights the growing tension between climate targets and food production in Wales, with livestock farming remaining a central part of the rural economy and Welsh cultural identity.

As discussions continue over the final shape of the Sustainable Farming Scheme and Wales’ long-term climate plans, pressure is mounting on the Welsh Government to reassure farmers that climate policy will not come at the expense of the sector’s survival.

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