A woman who didn't start her cancer treatment until four months after her diagnosis has opened up about the agonising wait and delays to the system which simply isn't working.
Julie Grabham was given her official diagnosis on November 18, 2022, however at an appointment where a biopsy was taken as well as an ultrasound performed on the first of that month, she was told in uncertain terms that if the biopsy came back clear, they would do it again. This was classed as the first day breast cancer was suspected.
Welsh Government targets that every person should receive treatment for cancer within 62 days of the disease first being suspected. For this reason, Julie planned to spend Christmas 2022 having surgery and then radiotherapy. But her treatment didn't start until February 2023, almost four months after she was diagnosed with the disease.
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She is not the only one whose cancer treatment faced delays. In May, just 55.3% of people started their first treatment for cancer within the 62 day target, leaving a further 682 people with cancer to face the heartbreak of delays to their care.
Macmillan cancer charity has described these delays as "categorically unacceptable and entirely avoidable". The charity estimates that around 4,500 people in Wales have faced worse outcomes from their cancer diagnosis because of the growing delays in starting treatment. The charity has launched a new campaign called "What are we waiting for?" in order to call on the Governments in the UK to act on cancer care.
Julie has shared her story in order to support the campaign, and show just how devastating the delays of starting cancer care can be. For Julie, who was told her breast cancer was at stage 2 following a number of scans after the initial November 18 meeting with her oncologist, waited every day for treatment to start knowing that every day it was delayed was another day for the cancer to spread.
She described having to "project manage" her own cancer treatment, and added that the treatment she has received has been fantastic, and that staff are lovely and cannot do enough, but the system works against them and patients. The process of testing and appointment making needs to be "streamlined across the NHS", Julie argued, to remove delays in people's care.
Julie has been able to identify a number of problems that contributed to the delay in her care, from being sent appointment letters with the wrong dates and times on them, to having to call various different departments to question where test results are that resulted in a delay of creating a treatment plan. This had a direct impact on her mental health.
Talking about her diagnosis, Julie from Lampeter said: "I had absolutely no symptoms whatsoever. I am 54, I already had a routine mammogram before Covid. So This is a mobile unit that we see in the carpark. I had a letter and I run my own HR business, I am very keen on making a difference with my clients, you know saying hat just because there's no legislation doesn't mean that we don't have to do it (let employees have time off to attend mammograms). I can remember doing a Facebook post saying just that, 'It doesn't hurt, just go and have a check'. Not for one minute thinking that would be the start for me."
She explained she received a call-back letter which was "a very basic letter", describing a change and to go to hospital for further scans, which would have been about four to five weeks after the initial mammogram. Julie said she didn't think anything of this, and even rearranged the appointment to fit around work as the letter didn't indicate it could be cancer.
She said: "They did an ultrasound. And it was only at that stage when they talked about a biopsy. That must be something there must be something visually on the screen, and you could see a mass in my left breast and it's quite big. And I said, well, that could come back as benign. She said no, if it comes back benign, we would do it again."
At this point she faced her first delay, the consultant who would deliver the news that the biopsy was cancer, was on holiday. When she did meet with them, she said they were fantastic and reassured her not to use her private health care because of the 62 day treatment target in Wales. However, a plan for treatment could not be put in place until she had an MRI and CT scan to determine whether it had spread. Julie believes these scans could have been booked in and done while she was waiting to see the consultant.
"So we spoke then to our two daughters which was heart-breaking, trying to stay positive, I'm fine, I'm going to be fine. And we told our granddaughters and the youngest is 13, trying to say Christmas is going to go ahead but we might need to tweak Christmas. But nothing happened in December because they didn't have the results from the CT and MRI scan. It was like one department would try and blame another department for the delays."
The MRI and CT results did come back before Christmas, but treatment wouldn't take place over that period, she said: "Cancer doesn't stop for Christmas." For more stories about health in Wales direct to your inbox, sign up to our newsletter here.
She eventually got an appointment to have a lumpectomy on February 8, which she said was the result of her sitting on a bed at Singleton hospital with a consultant and plastic surgeon and asking them when they work together and if they can get a date together there and then. "I wouldn't leave my hair dressers without making an appointment for the next cut, why can't it be the same in the NHS? We shouldn't be waiting for a letter for the next appointment."
It took about 100 days from the diagnosis for her to receive the treatment. She said: "Why have a target, when it has never been reached? As human beings we manage our expectations. If somebody said to me in November, it is going to be 100 days, I think I would have been fine with it."
"Those little things that sort of tip you over the edge, I was really stressed." Her lumpectomy was followed by an intense few days of radiotherapy. There was also a plan in place to do a six monthly treatment of bisphosonates via an IV drip for the next three years. However, Julie has since been told there was an "error" and that treatment isn't suitable or needed in her situation.
Julie is now using her skills in human resources and holds a patient led cancer chat every month where people with cancer and their families can talk about their experience.
She is also taking things one step further in the relation to ensuring that employees have a right to attend cancer screening tests like mammograms. At the moment, employers in the UK have no obligation to allow employees paid time off to attend screenings. Julie has launched a HG JR Pledge and already has 50 companies across the UK committed to offer time off for routine breast screening appointments and plans to take this to the UK Government as a petition in order to change the legislation.
A spokesperson for Swansea Bay health board said: "“We are very sorry to hear of Julie’s concerns. We cannot comment in detail on individual patients without their consent. However, we can confirm we are already in direct contact with Julie. We have agreed to review her case so we can share any learning across the organisation.
“Providing timely treatment for cancer patients is a key focus for the health board. We continuously strive to improve our targets by implementing action plans and increasing capacity to meet demand for our cancer patients by working with the National Cancer Recovery and Improvement Task Force.”
