Prioritising women's health after SCI (Forward - Spring 2025)

As the inequalities faced by women navigating healthcare systems after SCI are highlighted, SIA’s first ever women’s health taskforce continues attracting supporters. Here SIA members Jane and Dani share why they became part of a movement for change …

Jane’s story

SIA member Jane Hudson left an appointment for a mammogram in March 2020, being told no imaging could be taken of her breasts. As a C4-5 tetraplegic, Jane is paralysed from the chest down and was physically unable to position herself correctly. Five months later, her carer found a lump in Jane’s left breast. She was then diagnosed with a Grade 3 tumour.

Four years on, Jane is now cancer free. But lack of accessibility at her local hospital still prevents her from having mammograms – something, as a breast cancer survivor, she is entitled to annually for five years – which leaves her feeling extremely vulnerable. Jane’s experience compelled her to become involved in research to develop a robotic arm, designed to enable women with disabilities to have mammograms. The project, which SIA is sitting on the advisory board for, is being led by the University of York in collaboration with the York and Scarborough NHS Foundation Trust and is funded by Cancer Research UK.

We asked Jane, who was injured in a cycling accident in 2002, what becoming involved in SIA’s women’s health taskforce means to her. She told us: “I’m privileged to be asked to be part of it. It gives people like me and other women a voice and a chance to be heard. Influential people are part of it, including MPs and being able to speak to these sort of communities helps the message travel further and raises awareness. When others hear my story, they cannot believe we’re living in the 2020s and people cannot go for screenings. It’s crazy.”

“The taskforce is also about women’s health in general. Hearing other women’s stories is powerful and makes me more passionate and determined to push for change and equalities that we shouldn’t be fighting for nowadays. “I’m not a campaigner – I’m reluctant to make complaints. But my experience with breast cancer was the straw that broke the camel’s back. “As I’m unable to have mammograms, I dug my heels in. Although I have live-in carers, I can’t feel and examine myself. I was determined to go back to the breast clinic and for the consultant to examine me. So, every six months, that is what they do. For me, there’s sadly nothing else available.

“Health shouldn’t be compromised because we’re born with or develop a disability. It’s just wrong. We need the same access to healthcare as an able bodied person.

“I’ve had challenges with the healthcare system for the last 22 years, and it’s not changed – it’s not got any better. “We don’t want to be having this same conversation in 20 years. That’s why SIA setting up this taskforce is so crucial.”

Dani’s story

Former rugby player and mum of three, Dani Watts, says the biggest daily struggle she experiences since sustaining her spinal cord injury in 2017 is neuropathic pain. With a T10 complete SCI, Dani is a full-time wheelchair user and as sitting exacerbates her pain levels, she is often forced to spend days in bed to manage her symptoms.

SIA’s team of specialist clinicians supports people with SCI, many of whom experience neuropathic pain like Dani. A hidden and often less recognised consequence of SCI, neuropathic pain affects the lives of countless people every day.

Dani, 35, from Reading, says she’s been on the receiving end of comments from others, which she believes shows how little people understand. She explains: “Chronic neuropathic pain can be so debilitating, and it’s frustrating how invisible it is to others.

“It is such a tiring part of my spinal cord injury that completely disables me from being able to fulfil my full potential.”

For Dani, the constant pain affects every aspect of her life, from hobbies to her personal care, to relationships with family and friends. It causes her to miss out on precious time with her children (14, 12 and two) and husband. She’s even had to implement a traffic light system to help her children understand how she is feeling when managing the severest of pain.”

Asked what one crucial aspect of the healthcare system could be changed to better accommodate disabled women, Dani said it’s the opportunity to share knowledge. She explains: “It starts with the right people hearing lived experiences. I’ve had to battle a system that’s not delivering the same healthcare I could access before I was a disabled woman. I believe that comes from a lack of knowledge. She said: I was denied two crucial MRI scans in hospital because they lacked an MRI-compatible chair and refused to use lift options reserved for emergencies.”

Furthermore, Dani and her family suffered a tragic loss in 2023 when she needed to undergo a medical termination of her pregnancy. She believes this could have been avoided if healthcare professionals had specialised knowledge. Dani said: “If I’d had different treatment options available and had seen healthcare professionals with knowledge of neurogenic bladder, I know my family would look different.

“These experiences underscore the urgent need for improved accessibility and specialised care within the healthcare system to ensure disabled women receive equitable and effective treatment.”

For Dani, SIA’s women’s health taskforce will help raise awareness by highlighting personal experiences like hers to address the barriers disabled women face in healthcare settings. She said: “The key goal is to improve knowledge and awareness within the healthcare system to ensure disabled women receive the right to access care.”

This article was featured in the Spring 2025 issue of FORWARD magazine

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Dani also recently featured in our Paralysed bowel care campaign. Hear more from her below:

If you need to access a transcript of this video click here to view on YouTube