GP refused oxygen after A&G request to Neurologist

Hi all,

I was diagnosed privately with cluster headaches, and then moved back to the NHS as my private coverage won't cover chronic conditions.

Initially it was great, my GP happily accepted the diagnosis, prescribed sumatriptan nasal spray, then changed this to injections as the nasal spray wasn't very effective.

In my last cluster, I was using the injections, and they seemed to abort most attacks when I used them, but often required two doses, but of course the rest of the attacks that day were unbearable with no treatments available, so I'd ended up going to urgent care twice for Oxygen, which both times aborted my attacks for the rest of the day. Great, I'll request Oxygen from my GP and then I can primarily use Oxygen.

Turns out in Nottinghamshire, even with a cluster headache diagnosis, the GPs won't prescribe oxygen (they're not even sure how to, or if they have BOC accounts) without an explicit ask from a neurologist. My private neurologist sent a recommendation that they prescibe Oxygen, I thought that would sort it. No, they then refer me to a NHS neurologist, waiting since the end of my last cluster (January), and I'm not about to enter my next cluster period and still on the waiting list to even have an initial appointment.

Since my next cluster is approaching, I ask my GP to send an Advice and Guidance request to neurology to prescribe Oxygen. This is the response I get:

I have liaised with NHS Neurologist to update them about your previous therapy including your Sumatriptan use, as they have noted that this is generally superior to oxygen therapy. I have also spoken to a GP colleague about the home O2 service. Fundamentally I think we would need the NHS Neurology team to give us a concrete recommendation for Home O2 and a clear plan for the use of this (including duration of therapy, flow etc) before we would feel comfortable in initiating this. The Neurologist has indicated they feel there isn't much they can offer before clinic review and I have updated them as to this discussion and my plan to inform you.

I've sent in another message to my GP (separate request, as my GP didn't enable the option for me to respond to this message), basically pointing out that Sumatriptain (if it works) might only abort one attack, I have potentially 7 more to worry about for that day, and that NICE guidelines recommend triptans and oxygen for this reason.

Is there anything else I can do here?

I'm really stressing out over this and my next cluster coming before I have oxygen. I missed Christmas with my family last year due to this, ignoring the excruciating pain it leaves me in.

Thanks,
Steven