Disabled people facing ‘David and Goliath’ battle for support

Published

7 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.”

‘Truly abysmal’ – Welsh NHS waiting list list hits new record high

Published

1 hour ago

January 23, 2025

Tom Sinclair

THE LATEST NHS statistics paint a bleak picture of healthcare in Wales, with waiting lists reaching an unprecedented 802,268 patient pathways in November—marking the tenth consecutive month of increases. These figures have sparked widespread criticism, with opposition parties and healthcare charities lambasting the Welsh Labour Government for its handling of the crisis.

***The latest figures have sparked widespread criticism of the Welsh Government (Pic: File)***

Waiting lists and emergency care in decline

The 802,268 patient pathways recorded represent more than one in four of the Welsh population. Behind this staggering number lies a harsh reality for patients. The median waiting time has now climbed to 23 weeks, a stark contrast to the 14-week average in England. For those waiting more than two years for treatment, the figure has risen again to 24,361. This is a glaring failure considering Labour’s repeated promises to eliminate two-year waits by 2023 and 2024—targets that remain unmet.

Emergency departments also continue to struggle. The percentage of patients seen within four hours has dropped to 64.8%, well below the target of 95%. In December, 10,857 patients waited more than 12 hours for care, an 11% increase from the previous month. Only 47.6% of red calls, the most serious emergency cases, received an ambulance response within eight minutes in December.

***Ambulances waiting to off load patients outside Withybush Hospital A&E in Haverfordwest (Pic: Herald)***

Cancer treatment performance falls short

Cancer services are in an equally dire state. The performance against the critical 62-day target for starting cancer treatment has fallen to just 60.2%—far below the 75% benchmark. While Health Secretary Jeremy Miles highlights incremental progress, including a reduction in long waits for diagnostics and therapies, critics argue this is too little, too late.

James Evans MS, Welsh Conservative Shadow Cabinet Secretary for Health and Social Care, called the statistics “truly abysmal,” adding:
“People are dying unnecessarily across Wales. Families are losing loved ones prematurely, and NHS staff morale is plummeting. The Welsh Labour Government has broken the NHS and continues to fail those who depend on it.”

Welsh Government defends record

***Defending the NHS – Jeremy Miles said more money had been made available (Image: File)***

In response, Jeremy Miles pointed to recent funding increases and measures to address long waits. He highlighted a £50 million investment aimed at improving outpatient services and diagnostics, alongside a decline in delayed hospital discharges over the last four months.

“The health service in Wales continues to provide quality care to thousands of people every day, despite immense pressures from winter illnesses, including Covid-19 and flu,” said Mr Miles. “These figures do not yet reflect the impact of our latest investments, but I am confident that we will see improvements in the coming months.”

Charities demand action on cancer

***There have been several protests against closure of services in Pembrokeshire (Pic Herald)***

Cancer charities have voiced their frustration over the slow progress in improving treatment waiting times. Kate Seymour, Head of External Affairs at Macmillan Cancer Support, described the current state of cancer care as “woefully inadequate.” She criticized the lack of strong national leadership and urged the Welsh Government to implement the recommendations of Audit Wales’s recent report on cancer services.

“The latest data shows real people are facing agonizing delays, unsure if they have cancer or when their treatment will start,” said Ms Seymour. “People in Wales with cancer deserve better.”

Judi Rhys MBE, Chief Executive of Tenovus Cancer Care, echoed these concerns, describing the findings of the Audit Wales report as “deeply disappointing.” She highlighted the lack of progress on stubbornly long waiting times for certain cancer types, including gynaecological cancers.

Political fallout

***There has been heated discussion in the Senedd over NHS service delivery (Image: File)***

The political repercussions have been swift. Last week, the Welsh Conservatives tabled a motion in the Senedd, calling for the immediate implementation of Audit Wales’s ten recommendations to improve cancer services. The motion criticized the Welsh Labour Government for its failure to meet national performance targets since 2020 and accused it of undermining its own Cancer Improvement Plan through poor communication and unclear priorities.

Labour members, however, voted against the motion, prompting sharp criticism from James Evans MS, who called the vote “shameful.”

“The Welsh Labour Government has broken the NHS, is out of ideas, and is on its way out of office. We stand ready to fix Wales,” said Mr Evans.

The human cost

***Some patients are saying that they have been in pain whilst awaiting operations (Pic: NHS)***

For patients and families across Wales, these statistics are more than just numbers—they represent painful realities. Behind every delay is someone anxiously waiting for a diagnosis or treatment, often with life-altering implications.

One such patient, Rhian Davies from Newport, has been waiting over two years for a hip replacement. “The pain is unbearable, and it’s getting worse,” she said. “I can’t believe I’ve been left to wait this long. It feels like they’ve forgotten about us.”

As pressure mounts on the Welsh Labour Government, health experts and opposition parties are united in their call for urgent reform. Whether the latest investments and strategies will be enough to reverse the downward spiral remains to be seen. For now, the people of Wales continue to endure a healthcare crisis that shows little sign of abating.

Health

More than 400,000 visit pharmacies for common health issues

Published

2 days ago

January 21, 2025

Tom Sinclair

THE WELSH public is being encouraged to visit local pharmacies for free advice and treatment for a wide range of illnesses. New figures reveal that over 400,000 people used the Common Ailments Service in the past year alone.

Pharmacies offer convenient access to healthcare professionals, often without the need for an appointment, freeing up GP slots for those with more complex or urgent medical needs.

Common ailments service

Available in 99% of pharmacies across Wales, the service provides free, confidential advice and treatments for 28 common illnesses, such as sore throats and urinary tract infections. Since its launch in 2013, it has supported nearly 1.25 million people.

Around 220 pharmacies now offer the Pharmacist Independent Prescribing Service, allowing pharmacists to treat conditions such as ear, skin, and respiratory infections, sinusitis, and migraines.

A survey found that 95% of patients who used the service would have otherwise sought help from a GP or other healthcare provider.

Prescribing services expanding

Each year, up to 100 community pharmacists in Wales undertake prescribing training. From 2026, all newly qualified pharmacists will be registered prescribers, enhancing the range of services available at local pharmacies.

Primary care reforms

The Cabinet Secretary for Health and Social Care, Jeremy Miles, highlighted ongoing reforms to deliver more care closer to home during a statement to the Senedd.

Key statistics include:

GPs handle around 100,000 calls and 68,000 appointments daily.
Optometrists conduct over 2,000 consultations each month.
More than 420,000 new dental patients have been treated since April 2022.
District nurses see approximately 31,000 patients each month, equating to 1% of Wales’ population.

Comments from key figures

Health Secretary Jeremy Miles said:
“We know there is very high demand for GP services in Wales, with around 1.6 million people contacting their practice each month.

“For most common health concerns, your local pharmacy is the best option, providing free and easy access to treatment.

“We are working with the NHS to provide more care in the community, closer to people’s homes, and to make it easier for people to choose the right service for their health needs.”

Gwawr Davies-Jones, a pharmacist at High Street Pharmacy in Barry, added:
“Since the new pharmacy contract was implemented in 2022, our role has changed considerably. Instead of being in the dispensary, we are now in the consultation room for most of the day, offering clinical services.

“On average, we carry out more than 20 consultations daily, from providing contraception to emergency medicine supplies.

“The demand for advice on common conditions is great, giving pharmacists an opportunity to share advice and treatment, including prescribing antibiotics and other prescription-only medicines without the need to see a GP. This helps free up much-needed appointments for more complex conditions.

“We feel we offer an invaluable service to our community. The services we provide alleviate pressures on the NHS, giving pharmacists great satisfaction knowing they are making a difference.”

Supporting NHS pressures

Pharmacies in Wales offer treatment for 28 common illnesses under the Common Ailments Service. Many also provide emergency contraception, annual flu vaccinations, and regular contraception services.

The Welsh Government has significantly supported this service expansion, increasing its investment by 24% since 2016-17, with an additional £9.9 million allocated this year.

***Cabinet Secretary Jeremy Miles visited High Street Pharmacy in Barry today to meet pharmacist Gwawr Davies-Jones.***

Health

Lymphoedema patients to benefit from online mental health support

Published

2 days ago

January 21, 2025

Tom Sinclair

NHS Wales’ digital wellbeing service has teamed up with a pioneering clinic to help patients manage the mental health impacts of Lymphoedema and Lipalgia Syndrome.

The Lymphoedema Wales Clinical Network (LWCN) established a psychological support service – the only one of its kind in the UK – after patients spoke of the emotional challenges of living with these conditions.

Patients revealed how their physical symptoms were often accompanied by depression, anxiety and worries about appearance.

Support offered by the service’s two psychologists is now being complemented by direct referrals to SilverCloud® Wales, a suite of online, self-help courses based on Cognitive Behavioural Therapy (CBT).

Dr Jayne Williams, National Lymphoedema Consultant Psychologist for LWCN said: “This is an exciting time for us.

“We’re looking at different ways for people to access psychological therapies – SilverCloud being one of them. The aim is to provide timely, preventative support before people get to crisis point.

“As SilverCloud is online, it has the capacity to reach many more people than we could see face-to-face, and its flexibility means that it fits around busy work and family lives.

“Being able to offer something that patients can do in their own way, at their own pace is brilliant.”

NHS Wales online CBT project manager Fionnuala Clayton said the new referral pathway was inspired in part by feedback from a ‘Living Well with Lymphoedema’ event hosted by LWCN, where patients were asked what they would like from its emerging psychology service.

“Patients wanted to feel as though they were not alone and that they still had a healthy and happy life despite their condition,” said Fionnuala. “They wanted easy access to support for building resilience alongside help to help themselves.

“Coming away from the event, we knew a referral pathway would support many patients across Wales.”

Lipalgia Syndrome – also known as Lipoedema – is an abnormal build-up of adipose fatty tissue, usually in the lower half of the body, which more commonly affects women.

Lymphoedema is another incurable, long-term condition which develops due to a damaged or poorly-functioning lymphatic system. Damage can occur as a result of many factors including obesity, surgery, cancer treatment, infection or injury.

People who are sedentary are particularly vulnerable as the lymphatic system relies on movement to remain healthy and move the lymph fluid around the body. Symptoms include swollen and painful heavy limbs and a higher risk of skin infections and wounds.

Said Dr Williams: “These are conditions that people have to learn to live alongside forever, which can be incredibly difficult.

“They have to cope with swelling and pain, they may have to wear compression bandages or garments, carry out daily skin care routines and do lots of movement.

“We see lots of people with very low mood. There’s also a lot of anxiety around body image and intimacy.

“Feeling people are judging you, and perhaps not being able to find clothes or shoes that fit you, means your whole identity and your social confidence can be affected. You can feel more isolated and withdrawn.”

Around 25,000 people across Wales use LWCN services.

Local health board lymphoedema services can refer people to the psychology service within the National Lymphoedema Team, which is hosted by Swansea Bay University Health Board.

Dr Williams said several patients had been referred to SilverCloud’s Space for Positive Body Image programme after attending a body image workshop.

Other courses on offer include support for anxiety, depression and stress.

Anyone in Wales aged 16 or over can self-refer to SilverCloud, without seeing a GP and from the comfort of their own home.

Fionnuala Clayton added: “We’re delighted to onboard the Lymphoedema Wales Clinical Network. This has been a collaborative effort between services, working together to identify how best support patients living with Lipalgia Syndrome and Lymphoedema.”

For further information and support on Lymphoedema and Lipalgia Syndrome, visit https://lwcn.nhs.wales/

To self-refer to SilverCloud Wales, visit https://nhswales.silvercloudhealth.com/signup/