I’m male, 46, live in Manchesterin UK  and I started with headaches in December 2015, and was diagnosed with cluster headaches in May by a Consulting Neurologist. I have been through a whole series of prescribed drugs, leading up to the diagnosis and since. I am in my second cycle of attacks consisting of 6-9 headaches a day. The first cycle lasted from December until Middle of June 2016. This current cycle started about three weeks ago. I have never been one to Google ailments or seek support as I think it makes you think you have something, rather than leaving it up to professionals to diagnose. It was the appointment I had with my Consultant yesterday who suggested I should get to know more about cluster headaches.

I want to know if the experience I had with the GP this morning is normal and have others been treated in such a way and how to find GP that understands?

I took a copy of the Cluster Headaches treatment and symptoms history; I had update yesterday (16 Aug 2016) for meeting with Consultant, who finds the two-page summary useful. I have never met this GP before as the person I normally see is on holiday. I explained I had seen my Consultant yesterday, but this appointment was booked before then, as I needed to plan ahead as going on holiday next week. I ran through condition and outcomes of yesterdays meeting. That I had a cluster of headaches from January 16 through to end of June and that I new cluster had started about three weeks ago. I get up to 8 headaches a day, and I am completely drained, agitated and depressed. He listened said Cluster Headaches were very rare and in 25 years in practice had only come across two patients with them.

I outlined that the Consultant would be writing to the practice about latest meeting and will be suggesting new prescribing including: high flow oxygen, sodium valproate and continuation with current drugs Verapamil and Sumatriptan. I then went on to request shifting form Sumatriptan 100mg tablets to the injections, as due to Googling yesterday I’d found the guidance from NICE, as the tablets were doing very little only giving 15 mins relief at the end of an attack. 

The GP then explained that NICE only offer guidance, and how he is bombarded
Patients brining Google Dr to appointments and expecting treatment; he then then raised the issue of cost, with Sumatriptan injections being  £40per unit, and he is unable to prescribe these without  speaking to the the CCG first, due to budget implications. Further he said that I should only take Sumatriptan no more than 4 times a month due to them causing headaches rather than curing.

At this point I was in the midst of cluster attack and suggested what he said is untrue and tried to show him academic papers to prove my point, I also questioned why  NICE would recommend a treatment plan,  if it was not the most economic and cost effective treatment, given that is what their remit is? I requested he either looked at the NICE guidance I had brought along or he reffered to their webiste. This request was ignored, instead he then went through the other drugs I was prescribed, looked them up online, stated there is no clear guidance on dosage for sodium valproate and asked why I haven’t raised verapamil dosage. I explained this has been raised and then reduced due to side effects.

He mentioned that he would seek or I should seek faxed letter from consultant – it was unclear who was taking responsibility for this, so he could look to process other drugs that Consultant had spoken to me about yesterday. He then questioned rhetorically why Consultant had not given me a script yesterday, and then went on to explain that they are supposed to provide the first 2 weeks of new medication, but their managers encourage them not to do this as it comes out of their budgets, instead its better to pass this on to the GP budget instead.

I then asked him to complete the Disabled Students Allowance/ Disability Evidence Form on my behalf, to help the University understand why I am behind in completing my PhD. He explained that ethically that was something he was unable to do immediately as he needed to understand the impacts of my condition, ‘it was the first time he had met me and my case history was new’. He is the senior partner at the practice and I have been his patient for 16 years; he is my named GP but I normally can only get appointments with his colleagues. Any way I outlined I have been seeing his colleague fortnightly since January and this will be all documented – he then said that there was likely to be a £25 charge for the completion of the form, as completion will probably be outside his normal duties.

I then went back to the prescription and explained I was going on holiday next week for three weeks, and would like some rest bite from the pain, and hoping that he could prescribe what I have asked for and what is recommended by NICE. Again the conversation went back to, short falls of NICE and costs. He stated I don’t know what you do for a living and whom you are responsible to for budgets, but he is unable to write such prescriptions with large costs attached to them, with out clearance from the CCG first.

I explained if I had repeat prescriptions for the same timescales that the costs would be the same. However, this argument seemed to fall on deaf ears.

I did get a script for 6 injections, I think, not sure how many as in the midst of an attack, and just wanted to get the script filled. I then found out that the injections are not normal stock carried by chemists how naive. I now have to wait a day for the order to come through at the pharmacy. So hopefully tomorrow I can find out what rapid pain relief is like.

I left the surgery feeling completely abused by the GP, I did not feel like a patient but a spend thrift, draining budgets, a time waster or junkie after a fix, who should be paying for the doctors time and not wasting other peoples budgets.

Is that normal?
What should I do?

Thanks Bob - will look at Ouch.