hello my names Rich i live in exmouth england i have chronic c.h and really need sum support in my area does anyone know if plymouth hospital do gon injections as i have been discharged fron u.c.l london where i was getting gon injections every 8 weeks

Hello Rich
Are you seeing a neuro in your area? If not your GP will arrange for you to see one
It will have to be a neuro to arrange for you to have nerve blocks. I'm sorry I have no idea if they are done locally or not.

Helen

hi helen no im not i cant get my gp to refer me even though i have copies of all my treatment over the past 5 years from london my nuero was proffessor peter j goadsby i dont know wat to do im going over on the imigran injections oxygen aint working tried frovatriptan but no effect at all im at me wits end mate

Okay - don't worry! There are ways around this.
Has your GP said why he won't refer you? It doesn't matter anyhow - under the NHS you have the RIGHT to see a specialist in the area of your ailment. He can't refuse - so tought on him.

The simple fact is you have been under a specialist care for the last five years and it is your right to continue. If he refuses to refer you then tell him you will be writing to both the Practice manager and the local PCT as he has a duty of care he is not fulfilling. You have been receiving a course of treatment that you have every right to expect to have continue even if you have to travel to do so (which is a high probability)

He's stuffed - you have all the cards!
Don't be aggressive with him, just explain calmly and politely that he must understand your quality of life is greatly diminished by CH and it is unreasonable for you not to be given the level of care to which you are entitled.

I hope that helps!
Helen

thankyou Helen ive been round to my g.ps and have an emergency appointment today at 15.40 i will do exactly what you have told me and will report back to you as soon as ive seen him thankyou soo much its good to know there are people out there who understand and care ;)

Not a problem - we'll help in any way we can!
good luck with your appt!

Helen

hi Helen saw gp he is still refussing to refer me for a gon injection so i said i will be making an appointment to see the practice manager and calling the p.c.t when i told him that i had used my 2 imigran injections and needed some pain relief he gave me codiene i pointed out that the neuros say that you should never take codiene for a cluster headache or migraine cos of rebound headaches he said"i give it to ch suffers all the time"so i have taken the oppatunity to downdload prof peter j goadsbys last conference off the ouch site and printed it up i shall be handing a copy to the practice manager.if a gp does not know how to treat ch's then they should do there research.so it looks like another night in pain again >:(

Is there another doctor at the practice you can see? Or another practice you could go to in the area you live in come to that? What he lacks in intelligence he certainly makes up for in ignorance and pomposity.
You can refer the practice manager to the BNF or British National Formulary and point out the list of approved meds for CH does not include CH. YOu can also point out you have a confirmed diagnosis and an established regimen of treatment that it is not within your doctors remit to over ride given that he has no expertise or knowledge in this area.

If you need help making a check list of things to say or in writing a letter to the practise manager I will help with pleasure (because I am very, VERY peeved now!)

Helen

*edited to add the BNF is the "bible" doctors prescribe from - it's non negotiable on his part to give imigran injections too.

hi Helen ive now seen 3 of the doctors in the practice and there all as stupid as each other to put it midly if you could help me write a letter that would be fantastic!im very peeved off too and in pain looks like i will have to attempt a 3rd imigran injection and hope it dont give me a stroke >:(

Hi Rich-
I see your on your 3 imigran shot, I am pretty sure that is the same as our imitrex shot (is that right Helen?)?  In the mean time, while your fighting your way through overpaid GP's, try the imitrex tip on the side menu, you might be able to stretch your shots out.  If your getting 6mg shots at a whack.

Good luck,
Angela

Welcome Rich, like Angela said, read the Imitrex tip to your left.  I get a box of (2) 6mg injections where I only need 2mg to abort.  This gives me 6 injections per refill.

hi mate ill try that i read the tip but still not sure how i go about seperating the solution in half the dose its probly cos ive got a ch a.t.m and still very dizzy from overdoing my jabs for the past few days

We have stat dose kits issued here, I'm not sure if we can get vials and syringes even. That is something you would have to check with your doctor Rich.

Rich check your pm's - job done!!

Thanks Helen just need to print it now have another gp appointment a 3.30 2moro that will be the forth one this week!

Keep at it Rich.  You are in good hands with Helen.

Good Luck at that appt tomorrow!

Jeannie

Good luck Rich!  If you keep bothering them eventually they'll have to refer you, if only to make you go away. 
Emily

Hey Rick - HI FIVE!!!!!  :)

Hi Helen hope you are well and pain free.rite gps 1st got a call this morning from senor gp who prescribed me codiene to say they had missplaced my notes i gave them from proff goadsby i replaced them with a transcript 16 a4 pages long of proff goadsby's conference in 2007 also p.c.t have told them if they give me ant more trouble they will report them as they have broken their duty of care the doc asked me wat part of plymouth hospital i needed to be refferd to i replied"well im under a neuroligist so the neurolgy department wud be good" gave him the fax number for plymouth along with a headache specialists name and told him to call plymouth b4 refffering me to check they can do a bilteral gon whitch is wat sent me into remission in march and if they dont to contact dr anish bahra or dr j marin or dr e cittadini who have all treated me under proff goadsy and have all done gons on me with success and treated me with kind and repect i even provide fax numbers.i told the doc he has 2 weeks to get me my gon done or the p.c.t will take over and change my gp practice and i also mentioned that i have proff goadsbys email address in sanfransico and that i mite email him to ask him to email the gps if they dont comply with my orders that really shook them up!i told them to read proff goadsbys transcript as i was at the conference and that i wud be back next week to quiz them on it to make sure thet have read it!all in all i think me and you kicked a larger ammount of ass today  :D

Nice Going!

to be honest it was Helen who helped and got me into action mode!as for proff goadsy's transcript and sanfransisco email well i watched all 12 episodes of fawlty towers last nite and went into Basil Fawlty mode this morning.lol(thats a british classic comedy for all you international friends on here)hope international is not an offensive word ;D

Helen you rock!!  Rich good for you for advocating for yourself.  I hope you get all the care you deserve and need.

hello latest update on my cluster headache i need a gon problem after seeing g.ps everyday this week they have organised an appointment with manjit matharu on wedenesday at 12.25 no guarentee that he will give me the gon but bear in mind u.c.l russel square in london only do there gon blocks on a wednesday.to be honest i dont get on with the bloke but i figure if i cry my eyes out and get down on my knees beg e.c.t he might do it he is after all suppossed to be a caring man after all fingers crossed wish me luck my friends please

rich72 wrote on Dec 12^th, 2009 at 8:17am:

..............have organised an appointment with manjit matharu on wedenesday ................

I spoke with Dr. Matharu a few times when he was working with Dr. Goadsby. While he has never treated me, I have the impression that he fully understands what we go through and will work with you to get some control.

Marc

Manjit is fantastic. I absolutely love him to bits, he's one of the kindest most compassionate clever men I've met and he works tirelessly helping ch'ers.

You really couldn't be in much better hands  :)

are we talking about the same manjit matharu?proff goadsbys old registrar i saw him in jan last year in an awfull lot of pain and he sent me away i had to get a carer 8weeks later to speak to him in person to get a gon block done.i honestly belive he dont like me :)