Continuous delay of treatment by NHS

@Emma52 ,

That sounds like an incredibly difficult and frustrating experience, and I’m really sorry you’ve had to go through this.
As someone who also suffers from chronic pain, I completely understand the struggle of long waiting times and feeling neglected by the system. I waited 14 months just to see a pain consultant, then another 4-5 months between each recommended treatment—epidurals, facet joint injections, nerve blocks, etc. And after all that, I was left waiting over a year for CBT. But a three-year wait just to be referred to a pain clinic is beyond appalling. I’ve never heard of such an extreme delay unless something went wrong in the system, like a lost referral or missed communication.

It’s really worrying that you had to go private just to get the basic care you should have received on the NHS. I hope the private doctor’s support has helped in some way, though I can only imagine the added stress this puts on both you and your husband, especially financially. Was the private consultation arranged by the NHS to ease waiting times, or did you have to self-fund(as your husband did)or go through insurance?

If you haven’t already, it may be worth escalating your concerns through an official complaint. In my case, I wouldn’t have even had my first appointment in 14 months if I hadn’t raised my concerns through PALS (Patient Advice and Liaison Service). It didn’t fix everything, but it at least got things moving. If you decide to go down the formal route, PALS can guide you through the complaint process, or if you need extra support, you can seek help from a patient advocacy service. I’m in the West Midlands and found POhWER really helpful when I needed advocacy.

If a formal complaint feels too overwhelming, even an informal approach via PALS might help push things forward. Sadly, it often takes speaking up to get the treatment we should be getting without a fight.

I really hope you get the care you deserve soon. No one should be left suffering like this, and you definitely shouldn’t have to go through it alone. Please take care, and I truly hope everything works out well for you.