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Swings and Roundabouts

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#1 Fri, 08/05/2015 - 21:24
Last seen: 9 years 2 months ago
Joined: 03/05/2015 - 13:04

Swings and Roundabouts

Following the great advice I reviewed from members and OUCH helpline, I went to the doctors (4th visit in 2 weeks, different doctor each time). I was in the midst of a painful attack so it was evidently visible to the doctor how much agony I was in. After explaining about oxygen and injections, also that co-codamol and codeine have no effect on clusters; the doctor was very adamant that he couldn't prescribe oxygen and only a specialist could. Obviously I explained from the advice I received that he could prescribe it, but the doctor was insistent that I could only get oxygen from a specialist. Anyway I recieved a blank look when I asked about the injections. As I was in severe pain, the doctor referred me straight to A&E to recieve oxygen! So off I went, armed with my medical notes and a letter from my GP requesting that a neurologist assess me. With the NHS as it is, I wasn't seen for hours. Obviously by the time I was, my headache had subsided. I was wasting valuable A&E time but as my GP had sent me I couldn't leave but wait to feel a time wasting fool in front of the A&E doctor. Eventually when I was seen, I gave the letter and explained I was in desperate need of a neurologist. Alas A&E cannot refer me to a neurologist - Only a GP can do that! So the A&E doctor wrote a letter to my GP to refer me to a neurologist. I was now a postman. Despite my protests for oxygen and injections, I've been put back on the steroids (they stop working after a few days). My mum went to my GP to get my referral sorted and complain about my treatment. They write a report and the senior doctor is supposed to be ringing me to arrange an appointment with him. Two days later I am still waiting. I can't stop throwing up and my body feels completely wrecked by all the medication I've needlessly been put on. Anyone help me off these swings and roundabouts? 

Sat, 09/05/2015 - 08:41
Mr Git
Mr Git's picture
Last seen: 5 years 7 months ago
Joined: 26/02/2014 - 14:34

Hi Joanna

Sounds like your GP surgery could do with some retraining!!

When you are next in there, refer your GP to BNF It's the GP's bible. It states that the treatment for CH is subcutaneous Sumatriptan injection and high flow oxygen. End of story. Nothing to discuss. It's not a suggestion for the GP, it's a directive and they should do as they are told! Nothing else works. If your GP refuses to follow the BNF directive then say the following to him/her "given that you seem to consider yourself a CH expert then please tell me what treatment you are aware of which can abort a CH attack other than the treatment referred to in BNF". I presume you were advised about HOOF forms etc. I don't know if things have changed, but I downloaded a completed HOOF form and took it to the GP and his secretary and it was all sorted automatically??

With regard to a referral to a neuro consultant, unless you are in Wales (sorry, I haven't had time to read your previous posts as I have to start work soon) you have the right to see a neuro consultant of your choice under 'Choose and Book'. When you spoke with the helpline did they tell you who your nearest 'good guy' is? Just tell your GP to sort out a referral to him/her. 

I appreciate the predicament you are in, but unfortunately there is no quick fix. You need to start at the beginning and get a diagnosis and treatment plan from a suitable neuro consultant. If you are within a reasonable train journey from London (bearing in mind you probably spent 4 hours in A&E!) then you might like to consider trying to get an appointment to see the best consultants, our patron Professor Peter Goadsby and Dr Juana Marin who are based at King's, Denmark Hill, south London. If you would like help with this then send me a PM.

As you are rapidly discovering, whilst suffering the worst pain known to mankind, CH sufferers are forced to be determined and resourceful just to get basic treatment which is within their rights. It's not right and we shouldn't be put through this mill but I'm afraid it's the reality of the situation. What I should really be doing is advising you how to make a complaint about your GP. However, that won't achieve the objective of securing your medication, so row him/her out of the equation and go direct to Prof Goadsby.

Hang on in there Joanna



Warning: This forum may contain nuts

Sat, 09/05/2015 - 09:39
Harrietjt's picture
Last seen: 6 years 8 months ago
Joined: 22/10/2014 - 12:47

Blimey Joanna,

If there was a competition for which CHer has the most ridiculous tale to tell you would be way up there on the list!

Sean's advice is fab. I have been unaware of the BNF reference to use, now added to my armoury.

The next thing to do with the GP practice is to write a very polite letter to the Practice Manager saying you need urgent help with a problem, setting out very basically that you are in great need of the appropriate medication for your severely disabling neurological attacks. (I don't use the language of 'headache' any more). Give the BNF reference and the NICE Guidelines reference and ask for either, these to be followed, or an explanation as to why not.

It is the Practice Managers role to sort this out, but you must do it in writing. You can follow it with a phone call after a day or two, but in writing is the stuff that they will know can be used as hard evidence if they don't behave.

Keep going, you will get there. You are in the right and can back it up, they will know that, you just have to get it to the person who will 'hear' what you are saying. And yes, you could be forgiven for thinking that should be a doctor, but when doctors are idiots you need the Practise Manager. Sadly GP practices run more like businesses nowadays.



Sat, 09/05/2015 - 13:54
Last seen: 3 years 11 hours ago
Joined: 26/02/2014 - 14:55

Hello Joanna,

so sorry that you are having such a bad time- it's bad enough suffering without trying to get through to doctors and feeling so helpless, it's a all to familiar storyline with many of us,the mind boggles that it still continues in so many practices yet it's shocking,

i remember so well what it feels like , for many many years being treated like I was a nuisance, then the diagnosis I had sinus problems!!!again another favourite with the GP, after again many visits to ent clinics one of my appointments was early morning and on that occasion I had had one hell of a all nighters.. I was a mess to say the least- but luckily if that's the word said doctor looked , listened, read all my notes, then said --you don't have sinus-- sending you to neurologist, the rest is history.. Then I met ouch , I wish I had known about them all these years ago.

Sorry all sufferers don't have access to this site and suffering in silence and don't have the knowledge passed on to us from ouch and the members who share and post great help as have Harriet , Liz, Sean 

you are all stars,

good luck Joanna and I pray you get all the treatment you so deserve ,x


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