News

AM welcomes rare disease victory

Published

12 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.

Crime

Swansea man dies weeks after release from troubled HMP Parc: Investigation launched

Published

8 hours ago

December 4, 2025

Tom Sinclair

A SWANSEA man has died just weeks after being released from HMP Parc, the Bridgend prison now at the centre of a national crisis over inmate deaths and post-release failures.

Darren Thomas, aged 52, died on 13 November 2025 — less than a month after leaving custody. The Prisons and Probation Ombudsman (PPO) has confirmed an independent investigation into his death, which is currently listed as “in progress”.

Born on 9 April 1973, Mr Thomas had been under post-release supervision following a period at HMP/YOI Parc, the G4S-run prison that recorded seventeen deaths in custody in 2024 — the highest in the UK.

His last known legal appearance was at Swansea Crown Court in October 2024, where he stood trial accused of making a threatening phone call and two counts of criminal damage. During the hearing, reported by The Pembrokeshire Herald at the time, the court heard he made threats during a heated call on 5 October 2023.

Mr Thomas denied the allegations but was found guilty on all counts. He was sentenced to a custodial term, which led to his imprisonment at HMP Parc.

Parc: A prison in breakdown

HMP Parc has faced sustained criticism throughout 2024 and 2025. A damning unannounced inspection in January found:

Severe self-harm incidents up 190%
Violence against staff up 109%
Synthetic drugs “easily accessible” across wings
Overcrowding at 108% capacity

In the first three months of 2024 alone, ten men died at Parc — part of a wider cluster of twenty PPO-investigated deaths since 2022. Six occurred within three weeks, all linked to synthetic drug use.

Leaked staff messages in 2025 exposed a culture of indifference, including one officer writing: “Let’s push him to go tomorrow so we can drop him.”

Six G4S employees have been arrested since 2023 in connection with alleged assaults and misconduct.

The danger after release

Deaths shortly after release from custody are a growing national concern. Ministry of Justice data shows 620 people died while under community supervision in 2024–2025, with 62 deaths occurring within 14 days of release.

Short sentences — common at Parc — leave little time for effective rehabilitation or release planning. Homelessness, loss of drug tolerance and untreated mental-health conditions create a high-risk environment for those newly released.

The PPO investigates all such deaths to determine whether prisons or probation failed in their duties. Reports often take 6–12 months and can lead to recommendations.

A system at breaking point

The crisis at Parc reflects wider failures across UK prisons and probation. A July 2025 House of Lords report described the service as “not fit for purpose”. More than 500 people die in custody annually, with campaigners warning that private prisons such as Parc prioritise cost-cutting over care.

The PPO investigation into the death of Darren Thomas continues.

Crime

Woman stabbed partner in Haverfordwest before handing herself in

Published

9 hours ago

December 4, 2025

Court Reporter

A WOMAN who stabbed her partner during a drug-fuelled episode walked straight into Haverfordwest Police Station and told officers what she had done, Swansea Crown Court has heard.

Amy Woolston, 22, of Dartmouth Street in Milford Haven, arrived at the station at around 8:00pm on June 13 and said: “I stabbed my ex-partner earlier… he’s alright and he let me walk off,” prosecutor Tom Scapens told the court.

The pair had taken acid together earlier in the day, and Woolston claimed she believed she could feel “stab marks in her back” before the incident.

Police find victim with four wounds

Officers went to the victim’s home to check on him. He was not there at first, but returned shortly afterwards. He appeared sober and told police: “Just a couple of things,” before pointing to injuries on his back.

He had three stab or puncture wounds to his back and another to his bicep.

The victim said that when he arrived home from the shop, Woolston was acting “a bit shifty”. After asking if she was alright, she grabbed something from the windowsill — described as either a knife or a shard of glass — and stabbed him.

He told officers he had “had worse from her before”, did not support a prosecution, and refused to go to hospital.

Defendant has long history of violence

Woolston pleaded guilty to unlawful wounding. The court heard she had amassed 20 previous convictions from 10 court appearances, including assaults, battery, and offences against emergency workers.

Defending, Dyfed Thomas said Woolston had longstanding mental health problems and had been off medication prescribed for paranoid schizophrenia at the time.
“She’s had a difficult upbringing,” he added, saying she was remorseful and now compliant with treatment.

Woolston was jailed for 12 months, but the court heard she has already served the equivalent time on remand and will be released imminently on a 12-month licence.

News

BBC apologises to Herald’s editor for inaccurate story

Published

10 hours ago

December 4, 2025

Staff Writer

THE BBC has issued a formal apology and amended a six-year-old article written by BBC Wales Business Correspondent Huw Thomas after its Executive Complaints Unit ruled that the original headline and wording gave an “incorrect impression” that Herald editor Tom Sinclair was personally liable for tens of thousands of pounds in debt.

The 2019 report, originally headlined “Herald newspaper editor Tom Sinclair has £70,000 debts”, has now been changed.

The ECU found: “The wording of the article and its headline could have led readers to form the incorrect impression that the debt was Mr Sinclair’s personal responsibility… In that respect the article failed to meet the BBC’s standards of due accuracy.”

Mr Sinclair said: “I’m grateful to the ECU for the apology and for correcting the personal-liability impression that caused real harm for six years. However, the article still links the debts to ‘the group which publishes The Herald’ when in fact they related to printing companies that were dissolved two years before the Herald was founded in 2013. I have asked the BBC to add that final clarification so the record is completely accurate.”

A formal apology and correction of this kind from the BBC is extremely rare, especially for a story more than six years old.