When I asked for large print colour-coded labelling for my chemotherapy medication, I was initially told it wasn’t possible.
I was livid, especially as no explanation was offered. To guarantee my own safety, I needed this so I could see what medications to take at the right time.
I have a severe visual impairment, which means I’m unable to read standard print. I live my life autonomously and I was not willing to hand over control of prescribed medication to anyone else.
Knowing my rights, I stood my ground and eventually the hospital were able to accommodate my ask – but it shouldn’t have taken so long.
This was not the only accessibility challenge I have come up against during my cancer treatment, and I’m tired of being made to feel like I’m being unreasonable.
In May – at the age of 59 – I noticed a lump in my left breast while I was getting dressed.
As soon as I found it, I knew what it was and that I had to face it head on.
Sure enough, two weeks later, the breast clinic confirmed my initial suspicions and I was diagnosed with stage 3 luminal A breast cancer, which had also spread to my lymph nodes. It was terrifying, especially as I didn’t know at that point if it had spread further.
Following my diagnosis, I received a deluge of information that arrived to me by text, email and letter, but most weren’t legible to me because I rely on a screen reader (which is assistive technology that turns text into speech) and enlargement software (which magnifies everything on my computer) to help me read.
For example, some leaflets could only be read upside down because of the way they were produced. Even highly personalised documents arrived with mistakes so that I either had ‘breast’ or ‘beast’ cancer.
My enlargement software often blurred the PDFs, making them illegible as they weren’t designed to be magnified.
On top of this, in every interaction with the NHS, I had to explain my severe visual impairment again and again. I’ve had to repeat why I can’t read a leaflet or follow the signs, even though my NHS record is tagged with my sight condition. This is exasperating and undermines my patient safety.
As the date approached for my lumpectomy surgery and lymph node removal, I still hadn’t been provided with an accessible leaflet about the risks of anaesthesia. I was worried that there may have been critical information that I missed. I went into surgery without this knowledge, as I felt I had my back against the wall and needed the surgery.
It left me in no doubt how indifferent the system is to people like me. I had to constantly repeat my requests asking for accessible information and got the impression that the staff didn’t have time in their busy jobs to provide it.
I can’t fathom how clinicians can feel reassured that patients have given informed consent about treatment plans and possible risks with such poor access to information. How can patients like me feel reassured if we don’t have access to the same information as everyone else?
These incidents have made dealing with my cancer diagnosis even more challenging and made me want to highlight how accessible information should be a priority in all healthcare settings.
The law has said so since August 2016 when the Accessible Information Standard (AIS) was introduced, which set out a specific consistent approach to meeting the information and communication needs of all patients.
Unfortunately, the NHS providers I’ve dealt with aren’t meeting this legal obligation and it’s a critical part of patient safety.
Thankfully, early on in my treatment, I met two nurses who understood the challenges I was facing. They spent hours transforming paper leaflets about breast cancer and possible side effects of treatments into PDFs for me to read electronically.
The AIS means that nurses should be able to provide this information readily to patients with different communications needs and not be taken away from critical clinical tasks.
My experience is unfortunately reflective of the challenges that other people like me have when accessing the whole spectrum of health services, not just cancer treatment.
It has led to significant health inequalities, including situations that could put patients at serious risk through missed appointments, lack of medication information and delays in providing critical information.
Unfortunately, I’ve had many blind and partially-sighted friends and colleagues share their similar experiences with me when they’ve been accessing health services for a wide range of conditions.
Recent research by a coalition of charities including RNIB and SignHealth found that only one in 10 patients with communication needs received equitable access to healthcare and over three quarters of them said they rarely or never receive health information in alternative formats to suit their needs.
My breast cancer is eminently treatable with chemotherapy and I’m currently halfway through a six-month course of it. I will then have radiotherapy, followed by long-term hormone treatment.
I’m lucky because I will recover from my cancer and I’m looking forward to living life large once treatment is over, as well as spending lots of time with my two gorgeous grandsons.
But no one should have to go through what I have. It’s why I’m determined to shine a light on this issue.
We won’t be made to feel like burdens just for asking for the healthcare we deserve.
For more information on the work RNIB is doing around the AIS and to share your story, visit their website here.
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