"I wanted to have a definitive diagnosis, that didn't happen in terms of an absolute diagnosis and result until July"
Greater investment is needed in emergency cancer care as the sickest patients experience "very poor" treatment, according to a new report.
In a major new report published on Tuesday (January 24), the Royal College of Physicians (RCP) has highlighted how some patients in Wales face a "very poor experience" when their condition reaches crisis point.
The RCP is calling on all health boards to invest in acute oncology services and same-day care to improve patient experience and medical outcomes, reduce hospital length of stay, and keep people at home for longer.
The report found many cancer patients will, at some point in their illness, need specialist emergency cancer care in their local hospital A&E.
However, there is an unplanned and unmet need for acute oncology services at the hospital 'front door' across much of Wales, which means that cancer patients can have a very poor experience in a crisis.
An acute cancer admission can mean a patient’s condition is getting worse, but early review and rapid assessment by the right team can lead to quicker discharge and help avoid re-admission.
After moving to Bangor to be closer to family, John de Mora says issues transferring his medical records delayed his diagnosis and treatment of prostate cancer.
He explained: "I wanted to get something started on the treatment of the prostate and I wanted to have a definitive diagnosis.
"That didn't happen in terms of an absolute diagnosis and result until July, so you're looking at what 14-15 months of me wondering, have I really got prostate cancer?"
When he did finally start treatment, John experienced horrible side effects - which is common - but John says he struggled to get advice in his time of need.
"There is a massive pressure on clinicians because there aren't enough of them," He said.
"They're working longer hours, longer days, they have shorter periods of time that they can spend with patients, so they can't sit down for an hour and have a chat and try and reassure someone or point them in the right direction."
RCP vice president for Wales, Dr Olwen Williams, said that every year, "thousands" of people come into contact with acute oncology services (AOS) in the Welsh NHS.
She said: "In an ideal world, these patients would receive high-quality care at the front door from specialist clinicians who understand the complexity of cancer, its complications and treatments, and the devastating effect that the disease can have on people’s physical, emotional, financial and mental wellbeing."
After being diagnosed with melanoma, Jon Moon's treatment started immediately. When he too faced side effects, he got help straight away.
He said: "They just know it inside out and they know the side effects I was told about and everything, but they knew the answers for the side effects, so they could quite easily, once they know I got them, they had to get them under control a little bit, and then they put me on other drugs to actually counteract all the side effects, and all through that time they're on the phone to you or I can phone them 24/7."
"Marie Curie recently found that in Wales, more than 56,000 A&E visits every year are for people approaching the end of their life, and over half of these happen in the evening and at weekends.
"This makes it even more important that we get this right: we need more cancer specialists at the hospital front 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 support a clear national vision for AOS in Wales."
Jane Whittingham, advanced nurse practitioner (ANP), Cardiff and Vale University Health Board said that having a dedicated ward would "allow us to bypass the emergency department" but they'd need more funding and more staff.
He said: "We’d need more oncologists and ANPs and it would be amazing to offer a 7-day service, but that’s reliant on funding and staff."
"We’ve now got an occupational therapist, physiotherapist, dietitian and funding for speech and language therapy input in the Cardiff and Vale AOS team, and they have made a world of difference already. They are able to get people home quicker, we're taking more risks 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, lead AOS nurse, Aneurin Bevan University Health Board said: "If we could wave a magic wand, we’d want enough staff and resource to always have an AOS specialist at the front door. That’s how we’d make the biggest impact and avoid problems developing, because we’d have someone with expert knowledge involved from the start.
"We need to get cancer patients to the right place, first time – the most important thing is that there is AOS in district general hospitals to support these patients and work with other hospital teams to provide high-quality care."
Nia Blackborow, advanced nurse practitioner and nursing clinical lead for AOS, Betsi Cadwaladr University Health Board said they are working to "streamline admissions" and "improve patient experience".
She said: "We’re developing a better relationship with the medical on-call team because they can see that we are trying to help and support them with the acute take. The key thing has been building relationships with the front door team, reviewing and repatriating oncology patients as quickly as possible and being a point of contact to help sort out any issues."
A Welsh Government spokesperson said: "We have set out a comprehensive approach to improving cancer outcomes, including committing to detect cancer earlier and setting an expectation of all acute hospitals having an Acute Oncology Services.
"Health boards and trusts will plan and deliver cancer services in response to these commitments."