CGRP ON NHS

[Pippwin]

Is anyone out there who, like me , is a patient at the headache clinic at the London National hospital for neurology and neurosurgery, and is waiting for CGRP to be prescribed on the NHS? All they say is that the pharmacy haven't got it organised yet and that I am on a long waiting list. It is really hard to be patient...must also be hugely frustrating for the doctors and clinical nurse specialists.

I'm just wondering if they would take away my option of getting it on NHS if I had it privately while I wait. Anybody any experience of this?

[Chleo11]

Hi Pippwin. I've heard that the budget has been temporarily withdrawn for CGRP in several NHS trusts, because of lack of money. You don't die of migraines and that is the reasoning for it.

I never had CGRP private or NHS but had to see several private consultants because of my migraines. The only think I can say is that you have to be very careful. Because of the money shortage , I have the feeling that they try to discharge patients who are 'under other specialists' care'. That was what was written on one of my NHS report, which is really unfair as I am NOT under the care of any private specialist but merely saw them once. This was the reason why they discharged me (after having waited 12 months for the appointment).

Try to find a private consultant who doesn't force you to hand over your GP's details, or if so, at least one where you can choose to have the report not sent back to the GP. It becomes very difficult to find them. I don't know why it is so, as if you go private and pay with your money, that shouldn't be any of the NHS business.

All the best.

[Pippwin in reply to Chleo11]

Thanks so much for your reply, Chleo. This is quite shocking and I am appalled you have been treated like this. It seems unethical to discharge you after 12 months waiting (.After all, who wouldn't be desperate to see a neurologist after all that time)and I think it is against NHS guidelines..see below..nhs.uk/common-health-questi...

They probably think they can get away with it because Chronic Migraine sufferers aren't in a fit state to bother with complaining..

I shall be very wary. I need to accept that maybe it won't be available to me on the NHS in my lifetime. I have family and friends offering to pay but that is hard to accept for more than a couple of months.

Thank you and all the best.

[Hidden]

Hey gosh so glad you posted this! I've suffered from chronic migraines since 2015 and was put on the waiting list end of 2019 and still nothing! I have an appt next month and I'm hoping so hard it's available because I've come across some people on the NHS who have accessed it! Not sure what's going on. Let me know if you get access somehow? It's so difficult this waiting!