A woman from Swansea has said she had to wait more than 140 days to start cancer treatment, as latest figures show almost half of cancer patients in Wales are not being treated quickly enough. Ailsa Guard, 46, was given the devastating diagnosis she had metastatic breast cancer in February last year.
She first started to feel unwell after she noticed a lump in her armpit in November 2021. She claims there has been "delays and disruptions at every stage" of her treatment and she has "had to fight" for her care. At one point she went five months "with not a single action being taken to treat the cancer", Ailsa said.
The former project manager, of Hafod, claims the delays lasted until June 28 last year, which is when she started chemotherapy. Since then, she said her treatment has been "straightforward" and she has had a mastectomy and radiotherapy. But she said there were months of delays before this that had left her in an "endless cycle of worry".
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Ailsa previously told WalesOnline that after she had her first scan in December 2021, she was told the lump was probably Covid-related and to expect a follow-up appointment in a matter of weeks. But as time went by, the lump got bigger and no-one made contact so she had to "chase an appointment", Ailsa claimed. She finally had her first biopsy two months later on February 2 which revealed it was cancer.
Ailsa had been due to have a mastectomy on March 30 but an MRI revealed the cancer was in her lymph nodes in her neck and she needed chemotherapy first ahead of surgery. However, she said she had a letter on April 20 warning her of further delays and that her initial meeting with the oncology team would not take place until May 17.
She opted to go for a second opinion and fundraised £600 so she could cover the cost of a private mammogram in Cardiff. It led the Spire team to write to Swansea Bay University Health Board in a bid to speed up the process of her being seen.
In response, the health board said that Ailsa was seen by the breast cancer team less than two weeks after receiving the referral from her GP. They added that Ailsa was kept "informed and supported" throughout the process by the team, who wanted to undertake several investigations before starting treatment so they could decide which course of action would be best for her.
Speaking to Macmillan Cancer Support about her ordeal, Ailsa said: "For me this experience started back in November 2021 when I noticed a large lump under my armpit that hadn’t been there before. After delays in initial diagnosis, I was eventually told 'it’s bad, you’ll need to attend a breast clinic'. And that was that. I was told over the phone, I was on my own, and I was just left to get on with it.
“From that stage on I’ve had to fight for every bit of my care and treatment, with delays and disruptions at every stage. At one point I went nearly five months with not a single action being taken to treat the cancer I had been told I had. That is an horrendous feeling, knowing it is there while nothing is being done to get rid of it.
“From the start I’ve been told mine was a ‘special case’ as it wasn’t a straightforward diagnosis as to where the cancer was, but far from this leading to more care and contact, it seems to have led to less. There is no doubt that cancer care staff know what their patients need, and they do everything they can to provide it, but the system as a whole seems to lack this understanding or even any basic human compassion.
“I’m a strong person but the last year has just thrown me into a cycle of anxiety – an endless cycle of worry over 'is it getting worse and what might they find next'. At one point I was convinced I only had days left and was too scared to go anywhere on my own. That’s just not me. I went over 140 days without treatment. I counted every one of them. People just shouldn’t be put through that."
It comes as the latest statistics published by the Welsh Government last week show that just 52.9% of patients started their first treatment within 62 days of being suspected of having cancer in December 2022. This means 716 people faced delays in their care that month alone.
It is the second worst month since the Welsh Government's Suspected Cancer Pathway was introduced in August 2019, with October 2022 being the worst. The latest figures are also well below the Suspected Cancer Pathway performance target, which aims for 75% of patients to start treatment within 62 days of first suspecting cancer. This target has never been met.
Macmillan Cancer Support has warned that 2022 has been the worst year so far for Wales’ new cancer treatment targets, with more people than ever before facing delays in care. The charity also said the number of people waiting too long to be seen by a specialist and to start treatment is also accelerating faster than the overall numbers of people being seen and treated. It said that compared to pre-pandemic performance, the number of people experiencing treatment delays has increased 1.2 times faster than the total number of people starting treatment.
The charity claimed that treatment times last year for certain cancer types were "worrying". Gynaecological cancers currently have some of the longest waiting times - in January (25.6%) and December (25%) only a quarter of people with gynaecological cancers were treated within the 62-day target time frame.
The statistics for December also showed only 25% of patients with head and neck cancer started treated within 62 days. Next was sarcoma - the term for cancers that begin in the bones and soft tissues - at 33.3%. Meanwhile, the proportion of people starting treatment on time for lower gastrointestinal and urological cancers was 34.9% and 39.6% respectively.
Macmillan said the waiting times was taking a toll on the wellbeing of cancer patients. It carried out a survey of 2,020 adults in the UK living with cancer, which revealed almost two in three people with cancer in Wales (65%) feel the NHS is one of their top three biggest concerns aside from their own diagnosis, and more than half of people with cancer in Wales (55%) are worried about how the pressures being faced by the NHS will affect their chances of survival.
Richard Pugh, head of partnerships for Macmillan Cancer Support in Wales said: “This data shows how people being diagnosed and starting treatment for cancer are being left with their lives hanging in the balance and facing agonising delays in their care – there could be no stronger case made on the need for urgent action and change.
“Despite the valiant efforts of front-line staff, the cancer care system itself is failing to cope. Month on month, year on year – people with cancer are, along with their loved ones, being left to face the heartbreak of treatment delays that will ultimately impact on the outcomes that can be achieved for them.
“That is why the Welsh Government must take urgent action to tackle such long waits and improve cancer care. This must include the delivery of its national workforce plan to help address the long-running crisis in the cancer care workforce in Wales. Only with that will cancer services in Wales face any prospect of recovery."
A Welsh Government spokesperson said: “We are unable to comment on an individual’s medical care, however we were sorry to hear about this case. The NHS is working hard to reduce waiting times and we are investing heavily in cancer services to improve early detection and provide rapid access to investigation, treatment and high-quality care. We recently announced £86m for new cancer diagnostic and treatment facilities and are increasing the number of training places for specialists in cancer diagnosis, treatment and palliative care.”
In response, a spokesperson for Swansea Bay Health Board said: "We appreciate it was a very difficult time for Ms Guard while she waited to start treatment.
"Ms Guard was seen by the breast cancer team less than two weeks after we received the referral from her GP, but the team wanted to undertake several investigations before starting treatment so they could decide which treatment would be best for her.
"The test results meant that treatment plans needed to be modified. The purpose of this was to get the best chance of a cure for her, given her young age and the complexity of her diagnosis. We appreciate it is an unsettling and worrying time for people as they wait to hear what their cancer treatment will involve, but Ms Guard was kept informed and supported by the team throughout the process.
"We continue to support Ms Guard through her treatment and she has spoken highly of the teams involved in her care. If she does have any remaining concerns or questions, we would be more than happy to discuss them with her in person."
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