Tuesday, January 24, 2023

“I’ve waited 15 months to be told I have cancer”

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In a major new report published on Tuesday (24 January), the Royal College of Physicians (RCP) has highlighted how some patients in Wales are having a “very bad experience” when their condition reaches a crisis point.

The RCP calls on all health authorities to invest in acute oncology services and day care to improve patient experience and medical outcomes, reduce hospital length of stay and keep people at home longer.

The report found that many cancer patients require specialized emergency treatment at their local hospital’s emergency department at some point in their illness.

However, in much of Wales there is an unplanned and unmet need for acute oncology services at the ‘doorstep’ of the hospital, meaning cancer patients can have a very bad experience in a crisis.

Acute cancer admission can mean a patient’s condition is deteriorating, but early screening and rapid assessment by the right team can lead to faster discharge and help avoid readmission.

After moving to Bangor to be closer to his family, John de Mora said problems with transferring his medical records delayed his diagnosis and treatment for prostate cancer.

He explained, “I wanted to do something with prostate treatment and I wanted to have a definitive diagnosis.

“That happened in terms of an absolute diagnosis and a result as late as July so look at what 14-15 months I was wondering do I really have prostate cancer?”

When he finally started treatment, John experienced terrible side effects – which is common – but John says he struggles to get advice in times of need.

“There’s a massive pressure on clinicians because there aren’t enough of them,” he said.

“They work longer, longer days, they have shorter periods of time to be with patients, so they can’t sit down for an hour and talk and try to calm someone down or point them in the right direction.”

RCP Vice-President for Wales, Dr. Olwen Williams said “thousands” of people come into contact with acute oncology (AOS) services in the Welsh NHS every year.

She said: “In an ideal world, these patients would receive quality care at their doorstep from specialized clinicians who understand the complexities of cancer, its complications and treatments, and the devastating impact the disease has on people’s physical and emotional health can have, financial and spiritual well-being.”

After being diagnosed with melanoma, Jon Moon’s treatment began immediately. When he too was confronted with side effects, he got help immediately.

He said: “They just know it inside and out and they know the side effects that I’ve been told about and everything, but they knew the answers to the side effects so they could easily, once they knew I had them, they had to get them under control a bit and then put me on other medications to actually counteract all the side effects and all the time they are on the phone with you or I can call them 24/7.

“Marie Curie recently found that there are over 56,000 emergency department visits for people at the end of their lives in Wales each year, and over half of these are in the evenings and at weekends.

“It’s all the more important that we get this right: we need more cancer specialists at the hospital door, which is why we want to encourage senior NHS leaders and decision-makers to work with the Welsh Government to invest in these crucial teams and create a clear national vision for.” Support AOS in Wales.”

Jane Whittingham, Advanced Nurse Practitioner (ANP), Cardiff and Vale University Health Board, said having a dedicated ward “would allow us to bypass the ER” but they would need more resources and more staff.

He said: “We would need more oncologists and ANPs and it would be amazing to offer a 7 day service but that depends on funding and staffing.”

“We now have an occupational therapist, physiotherapist, nutritionist and agents for speech and language therapy in the Cardiff and Vale AOS team and they have already made a huge difference. They’re able to get people home faster, we’re taking more risks again because they’re being assessed by the therapy team, and it’s improved the quality of our multidisciplinary case-based discussions.”

Claire Gilfillan, Clinical Nurse Specialist, and Kay Wilson, Senior AOS Nurse, Aneurin Bevan University Health Board, said: “If we could wield a magic wand, we would need enough staff and resources to always have an AOS specialist on our doorstep to have. This is how we would have the greatest impact and avoid problems because we would have involved someone with expert knowledge from the start.

“We need to put cancer patients in the right place the first time – the most important thing is that there are AOS in the general district hospitals to support those patients and work with other hospital teams to provide quality care.”

Nia Blackborow, advanced nurse practitioner and clinical chief of nursing for AOS, Betsi Cadwaladr University Health Board, said they are working to “streamline admissions” and “improve the patient experience.”

She said: “We’re building a better relationship with the medical on-call team because they can see that we’re trying to help and support them with acute admission. The most important thing was building relationships with the door-to-door team and screening and returning oncology patients as quickly as possible and having a point of contact to help resolve issues.”

A Welsh Government spokesman said: “We have set out a comprehensive approach to improving cancer outcomes, including a commitment to earlier detection of cancer and the expectation that all acute care hospitals have an acute oncology service.

“Health authorities and trusts will plan and provide cancer services in response to these commitments.”

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