I took part in a workshop with MacMillan Cancer earlier this week. It was all about how digital tools could help with the self-management of cancer. It got me thinking about human contact vs virtual contact.
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I got really annoyed this week when my face-to-face appointment in Oncology was changed to a telephone call by my Oncologist. It was changed at the very last minute & like most disabled people, I’d had to make arrangements in advance to get Personal Assistance support so I could attend.
The face-to-face was a 3-month review appointment to see how I was coping with the switch to Tamoxifen. I needed to report some issues back. One issue was sufficiently concerning enough for the GP to book an urgent pelvic ultrasound. She even took the trouble to arrange it on the evening before my face-to-face appointment.
I was in so much pain in my lower back, stomach & pelvis that I had to go to A & E on the last Bank Holiday weekend. One CT scan & 10 hours (yes, 10!) of waiting later, the scan was clear of anything untoward, including kidney or gall stones. I got discharged with advice to take an over the counter medicine to ease stomach cramps. But the pain is still here & it’s interfering with my daily tasks. It’s got to a point where it’s scaring me.
Some folks might say that I could have easily talked over the telephone with my Oncologist. However I want the Oncologist to see my face full of pain, to see how I’m not moving properly because my lower back hurts so much. I feel that’s the way to make the situation real to her. I need to talk with her about the complex underlying issues that could be causing the pain & how Tamoxifen might be attributing to it. I respect my Oncologist & she treats me well, but she tends to underplay the complexity of the situation with her phrase “well we treat many people with underlying health conditions” which can make me feel like she’s dismissing my concerns.
The other thing about the face-to-face appointment was that the team had timed it really carefully so as not to interfere with a very special event in my life that’s happening at the end of June (more about that in next month’s blog). Now that it’s been rescheduled to a telephone call, it’s just two days before the special event which was really bad timing in terms of getting last-minute tasks done & managing my emotions. The team knew about my special event. I even suggested organising the face-to-face appointment after the special event, but the team wanted to see me in person, in June.
I turned the situation around for myself. I got my face-to-face appointment reinstated & the telephone review cancelled. I rang the MacMillan Cancer Navigator line & I spoke with one of the nurses there who was very sympathetic to my situation. She listened carefully to the details of my recent trip to A & E. She made a note of the fact that the GP had ordered me an urgent pelvic ultrasound & had put me on buprenorphine patches to help control the pain (this is a very low dose & hopefully a temporary measure). To cut a long story short, the nurse connected me with the Oncology department & one of the staff there asked permission of my Oncologist to reinstate the face-to-face appointment.
As I mentioned in the introduction, I’d taken part in an online workshop organised by MacMillan Cancer about using digital tools in the self-management of cancer. It was really interesting. To a certain extent, I already use digital tools. I use the NHS app &other hospital apps like Imperial NHS’ ‘Patients Know Best’ etc, (except that the hospital apps don’t always ‘talk to’ the NHS app which isn’t helpful!) These apps are useful for managing appointments & ordering repeat prescriptions, etc.
I often use charity websites like Breast Cancer Now & its online forums to check the general symptoms of cancer & the side effects of medication. However, what I can never check is anything more complex than the basics. The information & the knowledge about other underlying health conditions & how they might affect cancer treatments just isn’t there. I’m concerned about typing a question into A.I. because I know that much of A.I. is written by white males. Therefore the data that it holds isn’t useful or relevant for someone with any kind of diversity, including disability.
Digital apps & websites are only useful if you can use them. In general, they aren’t designed with diversity in mind. The formats are inaccessible – where’s the scope for large text, audio files, Plain English, Easy Read, captions & BSL? Yet producing information in accessible formats is stated as a reasonable adjustment in the UK’s Equality Act. Accessible formats aren’t just a ‘nice to have.’
The lack of data beyond the more general aspects of cancer & the lack of attention to accessible formats all leads back to why disabled people are so underrepresented in cancer.
If a new app is created, I put forward to MacMillan Cancer that any app shouldn’t be launched until all the inclusive parts of the app are fully functioning. So many times the accessible features are an add-on later. The designers of the technology only respond reactively rather than being proactive about digital access & building in the access features from the beginning. It’s so frustrating.
We’ll see what the ultrasound & the face-to-face appointment brings. I’ll put a caveat here that I feel sure that my symptoms are nothing untoward, but because I live with a cancer diagnosis, every new symptom needs to be investigated.
Onwards, as they say!
The Musings of Spu 