"55 weeks Delay"

I suffer with Fibromyalgia and Chronic Pain Syndrome and rely on the pain team to support me with regular appointments and treatments.

In May 2024 I had a lidocaine infusion on the understanding that the follow up infusion would be six months later. We are now in May 2025 and I’m still waiting to have the second infusion. I was advised after making endless calls that there was a backlog and there would be an appointment sent in the post.

It’s just so disappointing that the promises made with the Consultant are broken and there’s no other options available. Trying to speak with someone is almost impossible and the phone lines are beyond a joke. Nobody returns any messages that are left and  I’m left without any support or updates regarding my infusion.

There’s been no letters since the one dated July 2024 from the Clinical Pain Nurse who said my follow up infusion would be within six months. 

Honestly, you feel completely let down by the system and there seems to be no lifeline to provide the updates you need.

I was unaware that my consultant had left and there’s been no correspondence since July 2024 from the team. 

What’s the point in having a plan of action in place that helps control your pain if you are let down by the NHS regarding follow up treatments or appointments to advise you of the delay?

It is approaching a year since my treatment and there’s been no letters or phone calls that have been promised when I contacted the team. You are constantly advised that someone will contact you but sadly that never happens.

I wish the pain team would realise how much patients rely on support and regular appointments and treatment to keep their pain under control.

If there’s anyone from the Pain Team reading this message, can you  please make contact by letter or phone.