"I was left in tears"

I have a rare metabolic condition, MPS Type IVA. Every joint in my body is degenerating, amongst other medical problems, and I have been in pain all my life (I am almost 50). As I get older and my joints get worse, the pain increases. I have been on pain medication most of my life, but lately needed changes made. I was urgently referred to Pain Management at Crosshouse Hospital and had a telephone consultation today.

What an absolute waste of time it was. No help given whatsoever and I felt like a complete idiot who was begging for pain relief. Obviously, no one looked at what my condition does to the body or the forms I filled in and returned at their request. Being an intelligent person, I questioned the usefulness of this service and was expecting answers. I was told I was expecting too much in the way of pain relief, which I certainly wasn't.

The focus was on coping with pain through mindfulness and other techniques, which I have access to already and only calm the mind and certainly not a pain-wracked body. I was eventually hung up on.

Instead of a positive experience of a person asking for help, I was left in tears with nothing but the feeling that I was totally unimportant and would just have to suffer for the rest of my life. Utter hopelessness.

I have had years of surgery and treatment at Crosshouse Hospital and have had the best care a person could ask for, until today. I have never felt so helpless, humiliated and alone.