"Excessive wait times, false hope and struggling to survive"

I am a 63-year-old woman, suffering with excruciating, debilitating pain on a daily basis. I have several different types of arthritis throughout my body, including rheumatism and osteoarthritis. I am also in severe pain due to calcification of the soft tissue around my left shoulder joint and as a result, have limited mobility and am registered disabled.

In recent years, due to the increasing levels of pain, I have attended consultation appointments with orthopaedics and ICATS.

I initially was referred to ICATS by my GP, due to a suspected Baker's Cyst, but was told by ICATS that I required a knee replacement and would need to be put on the waiting list.

In January of 2023, I had an appointment with a consultant. I was advised and assured that my case would be marked as "urgent" and that I should be seen within a year or so, for both knee replacement surgeries. I was over the moon at this news and finally felt that the end was in sight!

However, I have since been informed by the hospital, that none of this was the case - that the consultant who saw me was a locum, that nothing about my case had been marked as urgent and that not only would I not be seen within a year, but that I could be expecting a potential wait of upwards of 5 years.

I am absolutely devastated with the complete lack of care and compassion and with the miscommunication.

In the past 3 years, I lost my husband of 30 years to Covid. He died in ICU, while myself and my family watched over facetime, from our kitchen. The level of care shown by the team in ICU and the Bereavement team following his death was absolutely out of this world. They went above and beyond, and I want to take this opportunity to praise all of their efforts and care.

That said - I am now widowed. Previously, my husband was my carer and helped me with dressing, cooking, washing as necessary. This has now all gone. I have 2 adult sons who do not live at home, but they do their best to help support me.

I have been told by my GP that during times of particular stress, my pain threshold will be much lower, and I may experience more severe pain.

I am in crippling, agonising pain constantly. This has had a detrimental impact on my mental health.

In the past 3 years, I've lost my husband, my sister, my brother-in-law and myself.

I previously attended the gym, went swimming, walked the dog, attended social events etc. I am currently in such severe pain, that I no longer leave the house. I am unable to walk, unaided and am terrified that I am going to fall. I have completely lost my independence and due to the extent of the pain and lack of mobility, have had to depend on my sons, at times, to help me get dressed and wash. I am absolutely mortified and have no quality of life. I may as well have died when my husband did.

I have even considered going privately to have my knee surgery, but I just can't afford it. I have to admit, I have been seriously considering recently if live is even worth living if this is what it amounts to. Lying in bed, at the mercy and whim of everyone else, unable to get dressed or toilet independently. Something that always helped me to manage my mental health was getting out and about and seeing people – going shopping or taking the dog for a walk. I’m unable to even manage that anymore as it’s too painful.

I can't go on like this anymore and I feel that the false hope and miscommunication provided by the orthopaedic department and the subsequent daily struggle to exist is so much so that if I am unable to get relief from this level of pain anytime soon, then is very little point in continuing to exist. This isn't a life. It's a punishment.