"Ridiculous waiting times"

I am a young person with Hypermobile Ehlers-Danlos Syndrome, Fibromyalgia, Osteopenia, and Type 1 Diabetes. My Fibro and hEDS mean I experience very debilitating chronic pain and fatigue, reduced mobility, and low weight due to my appetite being poor from pain.

I started suffering from severe back pain that meant my mobility and ability to carry out daily activities was impacted even further, and my Neurologist sent me for a Spinal MRI which showed a Spinal cyst and pars defects in the areas the pain is located. My Neurologist reffered me in April 2025 to Orthopedics explaining my MRI results and how I am in severe pain which is severely impacting my life and mobility. I was triaged as Routine.

By August 2025 I had not had an appointment and my back pain had become even worse, making it very difficult to walk, eat, or work. Due my other health issues I could only work a few hours a week on a self employed basis, but this has become even harder leaving me I severe pain and psychically wiped out. I cannot even sit up for long and can only do a few hours a day. A large portion of my day is spent lying down with a hot water bottle under my back. My bmi is very low I am severely underweight.

I called Neurology asking if the Neurologist could do me another referral requesting an urgent appointment but was told they were very busy so it could take time, and best thing was to ask my GP for a separate urgent referral. This was done by the GP in August and I was triaged as urgent.

In November 2025 I had still heard nothing so spoke to PALS at Wexham explaining how unwell I am and how this affecting my mental health now too. They contacted the Orthopedics Secretary but took a few weeks for them to reply to PALS and PALS informed me that they just don't have an appointment for me at Orthopedics. It is now January 2026 and Ive still heard nothing. I am very unwell due to pain and struggling to cook, eat, sleep, work, walk or go out due to this pain.

I feel this is totally unacceptable and its as though patients health are of no concern to the Orthopedics Department. I fear this prolonged wait will have long last affects on my psychical and mental wellbeing, resulting in me becoming even more Disabled than I was from my Fibro and hEDS. Just appalling and ridiculous.