Disabled people facing ‘David and Goliath’ battle for support

Published

11 months ago

June 14, 2024

DISABLED people too often face a David and Goliath-style battle for support under Wales’ health and social care system, a committee heard.

The Senedd health committee took evidence about the Welsh Government’s plans to reform direct payments which allow disabled people to arrange their own care and support.

Nathan Lee Davies, an author, artist, and activist from Wrexham, told the committee he has had a largely negative experience of direct payments with his local council.

“The local authority has recently clawed back £33,000 of my direct payments,” he said, adding that he finds it difficult to spend his money in the way he would like.

Mr Davies, who has Friedrich’s ataxia, which affects his co-ordination, balance and speech, was saving up for a rainy day as well as a holiday to Florida – his first break in 14 years.

But Wrexham Council demanded the return of “surplus” funds, leading him to launch a successful gofundme campaign to raise money for his dream trip.

Chris Hall, a volunteer who supports Nathan, said the campaigner gets no opportunity to co-produce his “defective, appallingly written” care and support plan.

He said Nathan faces a continual David-and-Goliath battle with a “dysfunctional” direct payments department, warning: “They’re not interested in what Nathan wants.”

He drew a parallel with the victims of scandals around the post office, infected blood, and the Hillsborough disaster – who found themselves isolated and up against big organisations.

Mr Hall told the committee disabled people are too often walking a financial tightrope unable to save money for a potentially catastrophic rainy day.

He stressed that disabled people deserve the opportunity to live a fulfilled life, not just get by.

If passed, the health and social care bill will introduce a right to direct payments via the Continuing NHS Healthcare support service.

Mr Hall warned that disabled people who opt for direct payments for Continuing NHS Healthcare may not be able to go back to receiving support from the council.

“I think Nathan and many people who are disabled say ‘it’s better the devil I know’,” he said.

“Rather than jumping into a swimming pool and saying ‘I’ll see if I can swim’ they’re saying ‘I’ll stay on the edge of the pool – at least I’m not drowning’.”

Shahd Zorob, a fellow campaigner, from Carmarthenshire, warned about more pressure being piled on an already under-strain health service.

Ms Zorob, who has cerebral palsy, also raised concerns about a shortage of personal assistants, saying the pay is simply not good enough.

Mr Hall agreed that there is too often a “revolving door” in terms of support workers, with Mr Davies finding it difficult to recruit and retain staff.

“He’s effectively self-employed and managing ten staff,” he told the meeting on June 12.

Cecilia Kenny, a disability rights campaigner, who is also from Wrexham, called for clearer information and communication around the plans for direct payments via the NHS.

Samantha Williams, policy manager at Learning Disability Wales, supported the reform’s aims but raised concerns about implementation and the administrative burden on families.

Jake Smith, policy officer at Carers Wales, said the bill would potentially increase choice and control for unpaid carers and their loved ones.

Kat Watkins, project development officer at Disability Wales, who recently moved to Continuing NHS Healthcare herself, also welcomed the proposed changes.

She said: “We’ve got a two-tier war between disabled people and people with long-term health conditions who either can have the control over their care or can’t.

“And that is not something that we want in Wales at all.”

Ms Watkins added: “It’s so important for human rights …they may have complex health needs but they still have rights as human beings to have an independent life.”

Health Board confirms appointment of Executive Medical Director

Published

9 hours ago

May 22, 2025

Tom Sinclair

HYWEL DDA UNIVERSITY HEALTH BOARD has today announced the appointment of Mark Henwood as its new Executive Medical Director.

Mark has held the role of Medical Director on an interim basis since February 2024, pending the appointment of a substantive Chief Executive Officer.

He has dedicated most of his career to caring for and treating patients in west Wales. He joined Carmarthenshire NHS Trust in 2006 as a Consultant Upper Gastro Intestinal and General Surgeon. Since then, he has developed his clinical and leadership career at Hywel Dda and was, until he was appointed into the interim post, a Consultant General Surgeon and a Deputy Medical Director.

Mark is an experienced leader and has held several leadership roles within and outside the health board since his first clinical leadership role in 2008. In 2016 he was appointed as the Clinical Director of Scheduled care, and in 2019 he was appointed as Deputy Medical Director for Acute Services. Mark is passionate about professional standards and supporting doctors to be the best they can be.

Phil Kloer, Hywel Dda University Health Board Chief Executive, commented: “I am delighted that, following a competitive and open process, Mark has been appointed to the Executive Medical Director role. Mark brings with him a wealth of knowledge and experience to the role. His passion for excellence and patient care, together with his longstanding commitment to mid and west Wales, makes him an exceptional choice for this role.”

Speaking of his appointment, Mark said: “I am both honoured and humbled to be appointed to the role and look forward to continuing to work with colleagues across Hywel Dda to progress our ambitious plans to ensure that our health care meets the needs of both current and future generations.

“Together, we will continue to place patients at the heart of everything we do. I am always inspired by the dedication and compassion of our medical teams, who work tirelessly – often in the most challenging of circumstances – to deliver safe, effective, and person-centred care. I am committed to supporting them as we navigate the complexities of modern healthcare and strive to build a service that our communities can be proud of”

Mark’s appointment is significant step forward in the Health Board’s ongoing commitment to strengthening professional leadership and improving outcomes for patients and communities across Carmarthenshire, Ceredigion, Pembrokeshire.

Health

Health board launches critical services consultation as MP demands answers

Published

11 hours ago

May 22, 2025

Tom Sinclair

A MAJOR public consultation on the future of nine vital NHS services in west Wales is expected to be launched on Wednesday (May 29) following a meeting of Hywel Dda University Health Board.

The consultation, part of the board’s Clinical Services Plan, will run until August 31 and seeks views on options for delivering care across services including critical care, stroke, radiology, emergency general surgery and orthopaedics. The board says all nine areas are fragile and in urgent need of change to ensure safety, quality, and sustainability.

***Henry Tufnell MP: Says Heath Board has lack of transparency and accountability (Pic: Herald)***

But the plan is already under political and public scrutiny, as newly elected Mid and South Pembrokeshire MP Henry Tufnell prepares for a key meeting with health board leadership in the days following the consultation’s launch. He has accused the board of presiding over a deteriorating healthcare system and called for “immediate and meaningful action” to restore public trust and address mounting delays in diagnosis, treatment and GP access.

“There’s still no acceptance by the board that there’s a problem,” Mr Tufnell said. “The management is failing us here in Pembrokeshire. There’s a complete lack of transparency and accountability.”

While health is devolved to the Welsh Government and decisions on service configuration ultimately lie with Senedd ministers and local health boards, Tufnell’s intervention puts Labour under pressure on two fronts—at Westminster and in Cardiff Bay.

The MP, who has already submitted a Freedom of Information request about GP waiting times and service performance, is demanding full disclosure from Hywel Dda on plans to tackle NHS fragility in the region. He insists the consultation must lead to “more than paperwork.”

“I want to see concrete commitments to improving patient access and safeguarding the future of local hospitals. The people I represent deserve clarity, not vague promises,” he said.

Cracks in the system—literally

Withybush Hospital in Haverfordwest lies at the heart of local concern. Once a fully functioning general hospital, it has seen gradual downgrading of services over the past decade—and last year, its structural weaknesses became national news.

In 2023, six wards were forced to close after dangerous concrete—Reinforced Autoclaved Aerated Concrete (RAAC)—was found in the building’s ceilings. Over 100 beds were taken offline during urgent repairs. Though all wards were reopened by spring 2024, health chiefs admit that problems linked to RAAC will remain for the “lifetime of the building” and further closures are expected as parts of the hospital are re-surveyed this year.

The Welsh Government allocated £12.8 million for temporary remediation, but the long-term future of the building remains in doubt, with calls growing for a new hospital to replace the aging structure. Campaigners fear the consultation may be used to justify further centralisation of services away from Pembrokeshire.

“A system under pressure”

The Clinical Services Plan identifies nine services at risk of failing to deliver safe, timely care. These include critical care, emergency surgery, stroke services, radiology, dermatology, ophthalmology, orthopaedics, endoscopy and urology.

The Health Board says it has no preferred option at this stage and wants to hear from staff, patients and the public before any decision is made. In-person and online events are planned over the summer, and a questionnaire will be made available from May 29.

Interim Medical Director Mr Mark Henwood said: “We want to hear your views on which options best address the challenges, improve standards, and reduce waiting times. We’re also keen to understand any concerns, impacts, or alternative ideas you may have—including your thoughts on the future role of our main hospitals.”

The consultation opens amid a grim new snapshot of NHS performance in Wales. Data published today (May 22) reveals persistent backlogs in planned care, mounting pressure on emergency departments, and cancer pathway delays across the country. In Pembrokeshire, GP appointment access remains among the worst in Wales, and local A&E departments continue to struggle with patient flow—exacerbated by bed shortages and social care delays.

Public invited to shape future care

The consultation will ask the public to comment on which proposals best address current service fragilities, how they may impact patients and communities, the role of local hospitals, and any alternative suggestions or priorities.

The results will be reviewed by the Health Board in November 2025, though that date may be pushed back if the volume of responses is high.

To take part or learn more, visit:
https://hduhb.nhs.wales/clinical-services-plan

Residents can also register with the board’s engagement scheme at:
https://www.haveyoursay.hduhb.wales.nhs.uk/siarad-iechyd-talking-health

Health

Half of adults unaware of key dementia symptom, warns Alzheimer’s Society Cymru

Published

3 days ago

May 19, 2025

Tom Sinclair

Charity urges early diagnosis in Wales during Dementia Action Week

ALMOST half of adults in Wales are unaware that problems with vision can be a common symptom of dementia, according to new research released by Alzheimer’s Society Cymru.

The figures come as Dementia Action Week (May 19–24) begins, with the charity aiming to raise awareness of the condition and encourage earlier diagnosis. An estimated 50,000 people are currently living with dementia in Wales — but nearly half of them do not have a formal diagnosis.

The new data reveals that 50 per cent of Welsh adults did not recognise changes in vision as a symptom of dementia. One in ten people surveyed could not identify a single common symptom.

Vision-related symptoms can include difficulty judging distances, trouble recognising objects, and misinterpreting patterns or reflections. Larger print may also become harder to read.

Other commonly overlooked signs include changes in mood or communication difficulties. Across the UK, only 61 per cent of adults recognised problems with communication as a symptom, and 64 per cent identified mood changes.

Rachel Nelson, Country Manager for Alzheimer’s Society Cymru, said: “At Alzheimer’s Society, we see too many people delaying seeking a diagnosis because they’re scared or unsure what it will mean.

“A diagnosis is not the end. It’s the beginning of getting the right support, making informed choices and living well.

“That’s why this Dementia Action Week, we’re encouraging everyone to learn more about the symptoms of dementia and to seek help if they notice changes in themselves or someone close to them.”

Alzheimer’s Society Cymru is promoting a free online symptom checklist to help people better understand the warning signs and take action.

Corinne Mills, Interim CEO of Alzheimer’s Society, added: “More than a third of people with dementia don’t have a diagnosis, meaning they’re missing out on the vital care, support, and treatment they need.

“Our research shows that 97 per cent of people affected by dementia saw a benefit in getting a diagnosis.”

The six most common symptoms of dementia include:

Memory loss – especially of recent events
Difficulty organising thoughts – trouble making decisions or solving problems
Problems with communication – struggling to find the right words or follow conversations
Problems with vision – difficulty judging distances or seeing edges of objects
Confusion about time or place – losing track of the day or forgetting where they are
Changes in mood or personality – becoming unusually anxious, irritable, or withdrawn

The charity emphasises that dementia is not a normal part of ageing, and early diagnosis allows access to treatments, care options, and the ability to plan ahead — including appointing a power of attorney and managing finances.

To check symptoms or get support, visit alzheimers.org.uk/checklist or call the Dementia Support Line on 0333 150 3456. Welsh language support is available on 03300 947 400.

Photo caption: Supporting early diagnosis: Alzheimer’s Society Cymru urges people to check symptoms and seek help during Dementia Action Week (Pic: Alzheimer’s Society).