Kirsty's Story: Living with Neurofibromatosis and Scoliosis

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Where next? After 10 years, 2020 is the year my business dreams become a reality (even Covid-19 can’t stop me!), and I finally get to own my state-of-the-art 100% allergen-free food factory! We also need a lot more secure, covered cycle storage, particularly close to the entrances of public buildings and transport hubs. I found Simon Community Scotland’s hub after speaking to their Street Team. It was the safest place I had been for months. It felt safe to talk, safe to connect with the support workers, safe to tell them my story and all my fears. Simon Community Scotland got me into one of their specialist women’s support services. We were given more hope when tests showed the melanoma hadn’t spread much deeper into the skin or to other parts of the body, where it becomes more difficult to treat. This meant that Kirsty would just need surgery to have the melanoma removed. The idea of the walk was to celebrate Kirsty’s 50 th birthday. One mile for each year. It needed to be something challenging to be able to ask people for sponsorship.

Shortly after the outbreak of the pandemic, in around April 2020, I comforted a young carer who'd become upset and overwhelmed. It resonated with me because it was during a time when Covid-19 was at its peak and life as we knew it had changed. Everything was an unknown.I am proud of my amazing team, who have worked (socially distanced, of course) so hard throughout a global pandemic which hit us mid-build! I was used to walking on my own so although it was great to have company and it certainly helped, it didn’t worry me when I was solo. I’d put my headphones in and listen to music. Kirsty talks about her experience following an incident where there were problems with care during the delivery of her third child following the administration of a Syntocinon drip. Kirsty describes the investigation process as being clouded in mystery and feeling like the organisation put her into a victim box without any concern for her mental state. Cycling on my road bike became difficult and painful, but I discovered I could cycle pain-free on an e-bike.

Kirsty is a writer and campaigner who founded the InfraSisters – a group of women that campaigns for night-time cycle infrastructure that is safe and comfortable for women and girls.The feeling that she was being passed around and fobbed off with unsatisfactory diagnosis and explanations continued. She was even referred to a psychologist and a psychiatrist, in case her pain was psychosomatic. Both discharged her straightaway, saying that they thought her pain was not psychosomatic and must have a physical cause. There is no one-size-fits-all-approach to support the patient and staff in response to a patient safety incident. Adapting to each situation and varying our approach to engagement and learning can be challenging in healthcare. That is why this guidance is crucial to equipping us with tools and knowledge to how we harness insight and involve the patient, as well as our staff across the NHS system, when a patient safety incident occurs.” Additionally, over 60% of the survey participants reported receiving the wrong diagnosis, most of them being diagnosed with Irritable Bowel Syndrome. These delays and wrong diagnoses highlight the problem of patients not having their symptoms or the intensity of their pain assessed appropriately. There’s no way I could carry my bike up to the flat and storing bikes on the ground floor is impractical.