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Health

Disabled people facing ‘David and Goliath’ battle for support

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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

NHS performance: Ambulances tied up as hospitals burst at the seams

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  • A NEW set of Welsh NHS performance data was released today (Thursday, June 20), and it contains more bad news.

The Welsh Government described the data as “disappointing”.

WG “LACKS GRIP” ON FUNDAMENTALS

Sam Rowlands MS, the Conservatives’ Shadow Health Minister, said: “These atrocious statistics show that the NHS is going backwards under Labour.

“Two-year waiting lists have increased for the first time in two years.

“Keir Starmer has called Labour-run Wales his blueprint for what a UK Labour Government would look like: these figures are a stark warning for the whole UK.”

Mabon ap Gwynfor MS, Plaid Cymru’s health spokesperson, said: “Labour’s complete mismanagement of the NHS in Wales has left us with waiting lists at the highest on record, targets for diagnosis and treatment are being consistently missed, and people are getting stranded in A&E departments for hours on end.

“It’s no wonder that we have such astronomical waiting times when the government has failed to deal with problems in primary care and social care.

“Until the government gets to grip with these fundamental problems, then waiting lists will continue to climb.”

A Welsh Government spokesperson said: “We have made it a priority to reduce long waiting times, and today, the Cabinet Secretary for Health met with health board chairs to instruct them to redouble their efforts to tackle these.

“These figures show the NHS is continuing to manage incredible demand for urgent and emergency care – the number of immediately life-threatening 999 calls in May was 25% higher than the previous year, and demand is nearly two-and-a-half times higher than pre-pandemic levels.”

THE LOCAL PICTURE: HOSPITALS

Over 30% of patients waiting to start treatment in the Hywel Dda UHB area have been waiting for over 36 weeks.

The Health Board has the second-highest proportion of the population waiting to start therapy. In practical terms, that means that around 4,000 people are yet to get the therapy they need.

The number of patients told they did not have it fell. However, the number of patients starting treatment has remained stable for years.

With rising demand for cancer diagnosis and treatment and no improvement in the numbers starting treatment, performance against the target for treating cancer dropped.

At least 75% of patients should start treatment within 62 days of first being suspected of cancer.

Only 42% of cancer patients in the Hywel Dda UHB area started treatment within the target time. To meet a revised target of 80% by 2026, Hywel Dda UHB will have to increase its performance by almost 100%.

The Welsh Government’s performance target for patients waiting to start treatment for less than 26 weeks is 95%.

No Health Board is close to meeting that target, although Hywel Dda UHB is the second-best performer—just over 50% of patients start treatment within six months.

Despite a dramatic fall in the number of inpatient beds in Hywel Dda UHB’s hospitals over the last six years, the number of inpatient admissions rose sharply in April, placing even greater pressure on chronically overstretched staff and resources.

THE LOCAL PICTURE: AMBULANCES

The percentage of red emergency calls being met within eight minutes fell across Wales.

The ambulance performance target is for 65% of all red calls to be attended to within eight minutes.

Across Wales in May, there were 5,110 red (life-threatening) calls to the ambulance service, 13.9% of all calls.

45.8% of red calls received an emergency response within eight minutes, 2.2 percentage points lower than in April.

In the Hywel Dda UHB area, 47.6% of red calls received an emergency response within 8 minutes, compared to a sharply reduced number of calls in the red category.

Examining more detailed data for the Hywel Dda UHB area demonstrates the pressure on emergency hospital admissions and the knock-on effect on the ambulance service.

When an ambulance takes a patient to hospital, admission is supposed to take place within 15 minutes of arrival, with the ambulance returning to service 15 minutes after that.

In the Hywel Dda UHB area, ambulances were tied up beyond those markers for almost 4,000 hours beyond expected admission and return to on-call.

Fewer than 18% of patients conveyed to a Major Injury Department were admitted within 15 minutes. For Major Acute Units, that turnaround was even worse, at barely 15.5%.

Once cleared, however, well over 80% of ambulances were back out on call.

Diving deeper into the data, we see that just over 1,700 patients travelled by ambulance to major emergency, major acute, and maternity and mental health units.

By a very crude piece of arithmetic, we can calculate that if those 1700 patients accounted for the 4000 hours of “lost time”, the handover stats would be even more shocking, with an average turnover of over two hours.

Moreover, localised data shows that 35.6% of all people who are attended by an ambulance go to a hospital using other means of transport.

A CRISIS ACROSS THE BOARD

The issue could not be clearer: delays at hospitals are keeping ambulances off the road.

The upward pressure on A&E services caused by the collapse of out-of-hours primary care (GPs, etc) is driving up attendance at all hospital A&Es.

The lack of beds is driving up a backlog of treatment. The lack of clinical staff means more junior staff fulfil tasks -including initial diagnoses- formerly taken by clinicians and registered nurses. Consolidating rural services on an urban model is making things worse.

Whatever the cure for the disastrous condition of the Welsh NHS, money will not be enough to turn around decades of decline.

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Health

NHS Wales struggles with soaring demand and cancer care delays

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THE LATEST NHS performance data for April and May 2024 reveals a troubling picture for healthcare services in Wales. The Welsh Government has acknowledged the disappointing figures, highlighting a growing backlog of long waits for treatment and increasing emergency demands. Despite efforts to tackle these issues, the healthcare system continues to face significant challenges.

The data shows an increase in the overall waiting list for NHS services, marking a reversal after 24 months of consecutive falls. Notably, the number of people waiting more than two years for treatment has risen. The Welsh Government attributes part of this increase to reduced activity during the Easter holidays, but the overarching issue remains high demand.

April witnessed the second highest average daily new referrals on record, putting additional strain on the system. Emergency services are also feeling the pressure, with May seeing over 36,600 emergency calls to the ambulance service, averaging 1,182 calls per day. This marks a 2.6% increase compared to the same month last year and includes a significant rise in immediately life-threatening calls.

Cancer treatment statistics present a mixed picture. While more people started their first definitive cancer treatment in April than in March, the overall delivery against cancer targets has declined. This inconsistency is concerning for patients and healthcare providers alike.

Glenn Page, Policy and Public Affairs Manager for Macmillan Cancer Support, criticised the ongoing delays in cancer treatment. “Far too many people living with cancer are still facing devastating treatment delays, and hardworking healthcare professionals are struggling to stay afloat in a system that simply cannot cope,” he said.

The statistics paint a stark picture: in April 2024, over 800 cancer patients in Wales waited more than 62 days to start treatment, nearly half of all those who began treatment that month. Performance in April was the worst in the past four years, continuing a worrying trend highlighted by Macmillan’s recent analysis that 2023 was the worst year on record for cancer waiting times in Wales.

Ailsa Guard, a breast cancer patient from Swansea, shared her harrowing experience of delays and confusion in her treatment journey. Diagnosed in 2021, she waited 141 days to start treatment and has faced continual setbacks. “I have had to push and fight at every stage,” she said. “Without my determination, I seriously believe I would have been lost to the system.”

The Welsh Government has emphasised its commitment to reducing long waits and improving cancer care. A spokesperson stated that new services have been funded to help keep people out of hospitals, contributing to a 2.3% decrease in emergency admissions in May. The government also hopes that upcoming votes by junior doctors, consultants, and SAS doctors to accept recent pay offers will help stabilise the situation.

Darren Hughes, director of the Welsh NHS Confederation, stressed the need for long-term solutions and investments. “The NHS cannot deliver effectively for all patients when things continue to run so hot. We need commitments from governments to longer-term thinking, including focusing on prevention, shifting more care into the community, and capital investment to make NHS estates more efficient,” he said.

As the NHS in Wales grapples with unprecedented levels of demand, the call for sustained investment and systemic changes is becoming increasingly urgent. Healthcare leaders and patient advocates alike are urging the Welsh Government to take decisive action to ensure that the NHS can provide timely and effective care for all its patients.

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Health

Welsh cancer care in peril as workforce crisis escalates, warn radiologists

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THE ROYAL College of Radiologists (RCR) has issued a stark warning about the escalating workforce crisis in Wales, revealing alarming shortfalls in clinical radiologists and oncologists.

Two new reports highlight a dire situation: Wales faces a 34% shortfall in clinical radiologists and a 12% shortfall in clinical oncologists. Without immediate action, these shortfalls are projected to rise to 28% and 38%, respectively, by 2028, the largest in the UK. Additionally, nearly a quarter (24%) of clinical oncology consultants in Wales are expected to retire in the next five years, compared to the UK average of 18%. Currently, trainees make up 29% of Wales’s clinical oncology workforce, slightly below the UK average of 32%.

Patient safety is at risk due to the critical shortage of radiologists. Wales has only 6.1 radiologists per 100,000 people, the lowest ratio among the four nations. All clinical directors in Wales report that they lack sufficient radiologists to provide safe and effective patient care. Cancer centres are experiencing routine delays in starting treatment and are struggling to manage increasing demand, relying heavily on goodwill, insourcing, and locums. Such delays are critical for cancer patients, as each month’s delay in treatment raises the risk of death by approximately 10%.

Despite the implementation of the Cancer Improvement Plan for Wales a year ago, the workforce crisis continues to worsen due to insufficient training and retention efforts. Hospitals are struggling to meet patient demand, and this issue is one of the most pressing challenges that the UK governments must address urgently.

The reports also reveal significant regional disparities in access to cancer care across Wales. Rural areas are the hardest hit. South West Wales has 7.4 clinical oncologists per 100,000 older residents, South East Wales has 6.6, but North Wales lags behind with just 5.3. North and West Wales suffer from the UK’s largest shortage of clinical radiologists, with London having twice as many radiologists per 100,000 people. This disparity leads to faster imaging test results and cancer treatment initiation in some regions, causing significant delays and increased anxiety in others.

An anonymous consultant stated, “I can no longer defend the NHS as an exemplary healthcare system. We are all failing and in so doing failing our patients.”

The RCR has written to the cabinet secretary, warning that without immediate intervention, Wales risks undoing decades of progress in cancer care. The RCR demands urgent investment in workforce development to ensure patients are not left waiting for a diagnosis and can begin lifesaving treatment promptly. They urge the next government to collaborate with the NHS to outline a plan to recruit, train, and retain clinical oncologists and radiologists, ensuring workforce stability for future generations.

Dr Katharine Halliday, RCR President, said, “Today’s reports lay bare a harsh reality: the crisis in Wales’ radiology and oncology workforce is jeopardising patient health. Despite our commitment to providing the best care, severe staff shortages are significantly impeding our efforts. We simply do not have enough doctors to safely manage the growing number of patients, and this issue will worsen as demand rises and more doctors leave the NHS. The immense strain on an overburdened system, coupled with exhausted staff and increasing demand, creates a toxic mix for the healthcare system in Wales.

“Urgent action from the governments of all four nations is essential. We must prioritise recruiting and training more doctors and implement strategies to retain our current workforce. Time is critical; doctors are working under extreme stress and are deeply concerned for their patients. We’re calling on the governments of all four nations to reset the system, save our NHS, and ensure that patients receive the quality care they deserve.”

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