Community
Seizure death inspires awareness campaign

Epilepsy Action UK receives £159,300 from the Big Lottery Fund: Llinos Williams raises awareness for the condition which killed her brother at the age of 18
THE TRAGIC death of a teenager from an epileptic seizure sparked his sister to support an awareness-raising campaign for his condition.
Llinos Williams spent years trying to come to terms with the tragedy of her brother’s untimely death before she too was diagnosed with the same condition as him.
She reports that her diagnosis made her even more determined to support Epilepsy Action Cymru, who recently welcomed the news that they were chosen to receive £159,300 from the Big Lottery Fund.
The grant money will be used to improve access to information about epilepsy at different stages of care.
30-year-old Llinos Williams from Pwllheli was diagnosed with epilepsy following her having a seizure in her workplace.
The realisation that she’d been diagnosed with such a dangerous condition, especially one which had devastated her family the way it had, shocked her due to the fact that she had absolutely no idea that she was suffering from it.
Llinos said: “One of my brothers, Dylan, passed away after having a seizure when he was just 18-yearsold in 2007. It was such a huge shock to the family as even though we knew he’d had epilepsy for about ten years, we didn’t know that people could die from it.
“I was diagnosed with epilepsy in 2012 after I’d had a seizure in my work place. After visiting my GP I later found out that it had been triggered by an infection.
“I was really scared because I was just thinking about what had happened to my brother, and to add to everything else as well I was scared for my other brother, Carwyn, who had been diagnosed in 2010 too.
“I had no idea that I had epilepsy for a long time, I had no problems at all when I was a teenager but that first seizure turned everything around.”
However, with the support of Epilepsy Action Cymru, Llinos and her family have managed to overcome many of the challenges that they face and are now championing awareness of the condition and helping others to learn more about it.
“Thankfully I’m really healthy now. I was lucky enough to find out about Epilepsy Action Cymru shortly after I was diagnosed and they have been so helpful with getting not just me, but my family to come to terms with my condition.
“Through them I’ve become a volunteer to raise awareness of the condition and give people advice on how to manage it, and have even spoken at conferences about my experience.
“It’s fantastic that the Big Lottery Fund has awarded this money to Epilepsy Action Cymru. The work that they do to help people like me is brilliant, and it’s important to be able to provide that support to as many people as possible.”
Ann Sivapathan, Wales Manager at Epilepsy Action Cymru, said: “We are delighted to receive this grant from the Big Lottery Fund.
“The money will allow us to provide a vital service to the 8,000 people living with epilepsy in Wales in the language they feel most comfortable with.
“We will be able to give accessible support and information, provide a voice for people with epilepsy on important healthcare issues and limit the social isolation felt by some people with epilepsy in this area.
“We believe this role will be a real lifeline for many people living with epilepsy in Wales.”
There are 13 other projects across Wales which have been granted a share of the £3,881,083 ‘People and Places’ funding from the Big Lottery Fund.
Leonard Charity Disability will be using £498,960 to expand their ‘Can Do’ programme from Cardiff, Newport, Swansea and Wrexham into more of Wales.
It is hoped that this expansion will offer 1,200 more young disabled people volunteering opportunities on community projects that will enhance their life skills and levels of independence, and ultimately break down social barriers that they face in day-to-day life.
Michelle Impanni, Senior Programme Coordinator for Can Do in Wales, said “We are delighted we can now develop the programme to reach even more young people across Wales to benefit from this volunteering programme.
“Can Do aims to support and equip our participants with the skills and confidence they need to live their lives fully and participate in society.”
Time to Change Wales, which is a partnership between Mind Cymru, Gofal and Hafal, have managed to secure funding from the Big Lottery Fund to deliver a brand new antistigma campaign for children and young people.
Antony Metcalfe, Programme Manager of Time to Change Wales, stated: “We are delighted to have secured funding from the Big Lottery Fund to deliver a brand new antistigma campaign for children and young people.
“We are really pleased to have the support of schools and teaching professionals across Wales and look forward to working with them to improve the lives of young people.
“It is crucial that action to improve mental health and reduce discrimination starts at a young age and we believe that this campaign will play an important part in this agenda.”
The People and Places programme seeks to award grants of between £5,001 and £1 million for a broad range of different community projects.
Highlighting the importance of this, Rona Aldrich, Wales Committee Member for the Big Lottery Fund, said: “Programmes like People and Places are making a difference to the lives of so many people in communities across Wales.
“It delivers on our promise to use National Lottery funding to regenerate and revitalise communities, tackle disadvantage head on and leave a lasting legacy.”
Community
Senedd unanimously backs sign language bill
PLANS to make Wales the best place in the UK for British Sign Language (BSL) users moved a significant step closer to becoming law with the Senedd’s unanimous support.
If ultimately passed, the BSL bill – introduced by the Conservatives’ Mark Isherwood – would end Wales’ status as the only UK nation without specific sign language protections.
Leading a debate on Wednesday December 17, Mr Isherwood said the Senedd supporting the bill’s general principles was a “huge step ahead” for the “vital” legislation.
Mr Isherwood, a disability rights campaigner for decades, explained his backbench bill would introduce legal requirements to promote and facilitate the use of BSL in Wales.
He said the bill, if passed, would be the most progressive piece of BSL legislation anywhere in the UK, recognising BSL is a language in its own right, not a communication support need.

He highlighted that the bill would establish a BSL adviser role, the first statutory post of its kind in the UK, describing its importance as something that “cannot be overstated”.
Mr Isherwood, who chairs cross-party groups on disability and deaf issues, told the Senedd: “This isn’t just my bill. This is the bill of the BSL community. Let’s make this happen together and be proud of it together on behalf of deaf people across Wales.”
Jenny Rathbone, the Labour chair of the Senedd’s equality committee, was convinced of the “overdue” need for legislation to give more standing to British Sign Language.

Ms Rathbone said the committee heard the biggest barrier “by some margin” was the availability of interpreters and the sustainability of the workforce.
She quoted a signer who told the committee: “The bill would make us feel respected and valued. But without proper funding, planning and deaf-led leadership, it won’t go far enough.”
Sioned Williams, Plaid Cymru’s shadow social justice secretary, told Senedd members: “Language is a part of our identity, our culture and our personal dignity.
“When someone cannot use their language, they are excluded from education, health care, employment and public life – and that is not acceptable in today’s Wales.”

Ms Williams warned that if the legislation fails to deliver real change, the deaf community would be left “angry, disappointed and very, very disheartened”.
She expressed concern that the bill does not legally require the BSL adviser to be a deaf person, arguing it is “not appropriate, possible or efficient” for non-signers to lead the way.
Mr Isherwood defended the decision not to require that the adviser must be deaf, warning a successful legal challenge to a single such provision could cause the entire bill to fail.
Welsh Liberal Democrat leader Jane Dodds warned of an immediate workforce crisis, with only 54 registered sign language interpreters in Wales as of July.
With many now approaching the end of their working lives, she said: “We cannot – we must not – allow this bill to fail because we didn’t have the foresight to address this crisis now.”
Support for the bill stretched across the political spectrum, with Reform UK’s Laura Anne Jones similarly welcoming the “long-overdue” and “vital” legislation.
Jane Hutt, Wales’ social justice secretary, confirmed the Welsh Government’s financial backing, committing £214,300 for the bill’s first year of implementation in 2026/27.
If it clears the final hurdles, Mr Isherwood’s proposal will be the first backbench bill to enter the statute book in about a decade following the Nurse Staffing Levels (Wales) Act 2016.
Community
‘Nowhere I can play’: Disabled children excluded from Welsh parks
NEARLY four in ten disabled children in Wales “never or hardly ever” play outside due to a “heartbreaking” lack of accessible parks, politicians have warned.
Rhys ab Owen, an independent, described the situation as “disgraceful” as he cited a Play Wales report showing 37% of disabled children are effectively shut out of playgrounds.
Leading a debate in the Senedd on Wednesday December 17, he read the testimony of a ten-year-old boy from Blaenau Gwent who said: “Nowhere disabled friendly – parks haven’t got disabled friendly equipment, so I can’t play.”
Mr ab Owen warned: “There shouldn’t be any discrimination… disabled children do face much greater problems in terms of park maintenance, and with accessibility and inclusion.”
He shared the experience of a 13-year-old girl from Newport who told researchers: “There’s nowhere I can play or hang out safely by myself as I use a frame to help me walk.”
The former barrister warned budget cuts were leading to a managed decline in standards, quoting a 13-year-old from Caerphilly who said: “Due to anti-social behaviour our equipment gets broken, burnt and vandalised and is then not replaced.”
The Conservatives’ Natasha Asghar was stunned by the scale of the crisis and revealed that only 11% of playgrounds in Wales are rated “green”, meaning they are fully accessible. By contrast, almost half are rated “red” for poor accessibility.

Listing the barriers families face, Ms Asghar highlighted that 30% of sites lack accessible paths and nearly one in five have gates too narrow for wheelchairs. “Those are just two of the barriers preventing disabled children from accessing play,” she said.
Jane Dodds, the leader of the Liberal Democrats in Wales, argued the shocking statistics should be a wake-up call for Senedd politicians.
“To hear that 37% of disabled children in Wales say they never or hardly ever play outside should be a figure to stop us all in our tracks,” she said.

Meanwhile, Mike Hedges pointed out that Wales became the first country in the world to put a duty on councils to secure “sufficient play opportunities” for children in 2010.
And Julie Morgan, a fellow Labour backbencher, celebrated Cardiff becoming the UK’s first Unicef-accredited child-friendly city in 2023.
Dawn Bowden, the minister for children, pointed to £5m to improve playgrounds this year but she too was “disappointed” by play satisfaction figures falling from 84% to 71% since 2019.

She said the Welsh Government has provided a “toolkit” to Wales’ 22 councils, “ensuring a holistic outcome-focused approach” to inclusive and accessible play.
The cross-party motion, which called for play to be protected from cuts – as well as improved access for disabled children – was agreed unanimously but does not bind ministers.
Climate
Pembroke tidal flood defence work to continue to January
SIGNIFICANT issues with a part of Pembroke’s tidal barrage are not expected to be fully fixed before late January, councillors heard.
Pembroke councillors Aaron Carey and Jonathan Grimes submitted an urgent question heard at the December meeting of Pembrokeshire County Council, which said: “In light of the repeated flooding events across the county – including the recent overflow at Castle Pond and the acknowledgement by your own Coastal, Rivers & Drainage Team that the barrage tipping gate remains inoperable until mid-January can you explain what assessment has been made of the adequacy of our tidal outfall infrastructure in the face of current and projected future storm surges and sea-level rise?
“If no such assessment has yet been undertaken, will you commit now to commissioning an immediate structural and risk-capacity audit, with a report to full council within three months, and with proposals for funding any remedial works required — to avoid recurring damage and disruption to residents, highways, and public amenities?”
Responding to the urgent question, Cabinet Member for Residents Services Cllr Rhys Sinnett said a significant assessment of the Pembroke Tidal Barrage had already been undertaken over the past two years, with regular inspections.
He said “a comprehensive package of works” began in September which were due to be completed before Christmas but said there had been “significant issues” with the tipping gate hydraulic ram, with a significant overhaul now taking place, with reinstatement expected by late January.
He told members additional mitigation measures were now in place and, once works are completed, enhanced works will provide improved resilience and “long-term reliability,” with further reports due to come to Cabinet.
Cllr Carey and Cllr Grimes had also submitted a notice of motion saying: “That this council notes with concern the repeated and increasingly severe flooding experienced in our coastal, estuarial and river-fringe communities over recent weeks — in particular the flooding events affecting the Commons/Castle Pond area.
“That the council further notes that, according to correspondence from the Coastal, Rivers & Drainage Team Manager, the tipping gate at the barrage remains out of operation until mid-January due to mechanical issues; meanwhile high tide, heavy rain, wind-driven tidal surges and overspill at the sluice have combined to overwhelm the drainage/outfall infrastructure.
“That we recognise the current maintenance schedule (delayed ‘til after the summer season) and the justification given — but further that such planning failed to foresee the likelihood of severe winter storm and surge events, which climate change makes more frequent and more intense.
“That this council therefore calls on the Cabinet to commission an urgent review of:
- The adequacy of the current drainage/outfall and tidal-sluice infrastructure (barrage tipping gate, sluice/sluice-valve, flap valve, outfall capacity) for current and projected climate/tide conditions.
- The maintenance scheduling policy for coastal and estuarial flood-risk assets, with a view to ensuring critical maintenance is completed before winter high-tide / storm-surge season, rather than — as at present — being delayed until after summer for ‘recreational / biodiversity’ reasons.
“That, pending the outcome of the review, the council should allocate appropriate emergency capital funding to remediate the barrages / sluices / outfalls at risk of failure or blockage — to safeguard residents, properties, highways and public amenities from further flooding.
“That, further, this council resolves to publish a public flood-resilience plan for the county, identifying all coastal and river-fringe ‘hotspots,’ maintenance schedules, responsible teams, and a transparent timeline for upgrades or remedial works — so residents have clarity and confidence in flood prevention measures.”
The notice of motion itself will be considered by the council’s Cabinet at a later date.
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