If you're here, thank you!

My name is Steph, and I'm a 28 year old healthcare worker in Nottingham. I work in the NHS supporting a leadership team as a PA - but I am also a passionate disability advocate and activist. I'm working towards a career in improvement work for disabled and neurodivergent NHS staff, and improving the disability employment gap within UK healthcare services.

About me

For anyone that knows me, this has been a long time coming.

For anyone that doesn't, I have severe fibromyalgia, ME/CFS, and hypermobility syndrome. My GPs began investigating this in 2019, but existed way before this. My teenage years were spent mostly asleep, any extra curriculars dropped, and no energy for seeing friends. Over the last few years, this has worsened significantly. I have been reliant on walking sticks for my knee and back pain since 2023... but now struggle to even leave the house. (I am also navigating a diagnosis for autism, which has been deeply difficult with ongoing cognitive difficulties and pain-brain!)

My chronic pain is daily, constant, and has a brutal impact on my daily functioning and future planning, and my chronic fatigue is debilitating. I can no longer walk short distances due to pain and subluxations in my joints (partial dislocations). I experience heavy post-exertional malaise as a result of my ME/CFS. Not to mention - I've been severely iron-deficient anaemic since I was young, which also impacts my fatigue and recovery. I am under hospital investigations with endocrinology/rheumatology for further underlying issues. (Which I'm dreading! But more answers are always nice.)

I spend every day pushing myself to try and improve, and work towards my goals in transformational care towards disabled staff and patients in the NHS. All the energy I have goes towards my aspirations in the NHS.

I care deeply about anybody impacted by long-term health conditions, disabilities and neurodiversity. Maintaining employment is significantly harder. If my voluntary advocacy work for NHS staff has shown me anything lately, it's that more and more disabled/ND people are having to leave employment for their own health and wellbeing.

I believe in an NHS system that supports our communities both as patients and staff. If we support NHS staff, our cohorts can care for patients even better.

I am determined to stay in work, and make a difference from within the NHS as a disabled person. Outside of my regular role, I run a network for disabled staff. I am also active in national NHS disability groups, and will be pursuing a Master's degree in Disability Studies, Rights and Inclusion (made possible by the Snowdon Trust and DFN charitable foundation!)

I don't like talking about myself too much, but it really feels like the world is turning in my favour... and the next step is getting my freedom back with a powered wheelchair.

Which chair?

I've tested a variety of chairs - both manual and powered. I've found that the Whill C2 really suits my needs, and makes me feel safe enough to use public transport and get to my office. This costs £4,995. I'm only fundraising for the chair, rather than any accessories! £5k already feels like a LOT of money to me!

Why not Motability?

I've been caught in the strange void of PIP reviews for some time now. I was awarded Personal Independence Payments (PIP) in 2024 after a significant struggle. However, given the government reviews of this government support service, I was only granted a two year award.

This meant that by the time I'd worked up the courage to find a more supportive disability aid via the Motability Scheme, I was told I was no longer eligible.

Given the ongoing reviews of PIP, I worry that I won't be able to access the Motability Scheme if my case goes under harsh review, and want to try and save towards my own powered wheelchair while I still have my award.

What would a powered wheelchair mean for me?

If I could get to work in a powered wheelchair, it would change my life.

I wouldn't be fighting the screaming pain and numbing fatigue it takes to move myself around. I could take the bus! I could maybe even go to the shops! I could be outside! I could even get to the library! The possibilities are endless.

It would mean I'm more able to host events internally for disabled NHS staff who need support. It would mean I could potentially attend more speaking opportunities, as I've been asked many times if I can attend events and have had to turn them down due to chronic pain and fatigue.

I'll be honest - the majority of the photos I've included in this fundraiser are from easier times in my life. When I've been more mobile, when I've been able to laugh and smile and feel the breeze on my face. I've had to relentlessly search for 'nice' photos of myself. I haven't exactly been the most photogenic recently given the pain and fatigue...

I'm hoping that maybe I can start making memories again soon.

For years, I've imagined what it would be like if I could get around without pain.

I'm hoping that, soon, I'll be able to - and I'd love to take you on this journey with me!

Thank you again - anything helps