Clearer pathways to treatment and joined up thinking.
I have Fibromyalgia and CFS. When I first went to the GP, she advised it sounded as if I had Fibro and referred me to Rheumatology on the off chance that the pains in my legs were arthritis and to the Chronic Pain Clinic to manage my (awful) pain levels. Pain Clinic wouldn't even accept me onto their list until Rheumatology signed me off. Waited 18 months just for a first apt, two years until they signed me off from their services (confirming Fibro and CFS). For six months every random GP I saw (didn't actually see them, it's all phone apts now) "kept forgetting" to re-refer me to the Pain Clinic. Finally got an apt through for Dec 2025!! Thats four and a half years after I first went to the GP with indescribable pains in my legs and worse fatigue than someone with newborn twins with colic!
I can't work, I can barely walk, my pain is not managed by Pregabalin, Gabapentin, Duloxetine or Amitriptyline which are the only medication GP's can prescribe without input from the Pain Clinic (none of the above are actual painkillers, two are anti-depressants and two are anti seizure meds prescribed off brand for Fibro).
My son was under CAMHS as a younger teen. Refused to work with Adult Services when he was transferred over because of his experiences with CAMHS. Was told that because of his diagnosis he would have access to the BPD pathway when he chose to engage. For the last YEAR he's been trying to access help. GP says there is nothing they can do and no other medication alternatives - these have to be prescribed by AMH Services. AMH Services won't see him (has multiple diagnosis and is therefore not an "easy fix") as he doesn't fit any of their narrow criteria pathways (despite still having BPD) and keep sending him back to the GP. GP shrugs shoulders and re-refers to AMH - who then send him back to the GP. He just wants help to manage his worsening OCD and Agoraphobia. OCD team won't see him because her has BPD, BPD Team won't see him because he has ASD, ASD Team won't see him because he has OCD and BPD. It's fucking ridiculous.