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Vasculitis UK
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Pain Clinic appointment - IN FOUR MONTHS!!!

I have WG and have suffered from bad, virtually constant, headaches for the last 18 months. I have seen a Consultant Neurologist who gave my GP a list of 3 drugs. I got to the 3rd one and experienced some relief - maybe 80%. Subsequently, this drug was 'withdrawn' as it was thought to be the cause of nausea I have been suffering. It wasn't - but it was, I am told, expensive!

My GP has now referred me to the Pain Clinic ..... I received my 'Choose and Book' paperwork and phoned accordingly. They couldn't offer me an appointment!! Eventually, on Saturday morning I received a letter from the hospital offering me an appointment on December 14th - 4 months away!!

Any suggestions? To say I am distraught is an understatement.

12 Replies

I have not had the bad exoerience you are having so my suggestion is not based on experience but perhaps you could ring them and ask them to give you any cancellation that comes up.


I found Pain Clinic did not really help me as I also have a degenerative spinal problem, with the worst area being the neck which they injected steroids anesectic into the area. i also had acupuncture which helped but not long lasting. I think I went through everything and then years latter was offer a place on Chronic Pain Program. This was a 3 week program and you where offered a place to stay at the hospital or could go home. I decided to stay and get the best benefit from it. If you look up on the internet Wolfson Neurorrehabilitation Centre and contact them i am sure they might be able to give you information about the closest to you? of which you might then have to ask your GP.I feel it was of great help to me. This program is about you managing your pain as much as possible. If you are interested you should be able to buy an Audio set called "Audio Explain Pain" by David Butler - this is really the course! and consists of 3 cd discs - I know when you see it - it is expensive!!! but worth every penny. If you can not afford it and would like to borrow mine, please contact me on anthony.falla@me.com


This is disgusting! We think that the people who run the pain clinic and the people in charge of the appointments should experience the pain you are having!! This is really not acceptable.!

I think you should write a formal letter of complaint to the PCT and follow Jann's and Anthony's advice.

Take care


1 like

Yes, it's disgusting! Thank you all for your input. I've already called to explain that I am available at the drop of a hat and am now in the process of researching the 'Explain Pain' CDs. I see my GP this afternoon ....... it won't be fun! (not for him anyway!)

Will keep you posted!


Well, I found 'Explain Pain' so that will give me something to do for 4 months!! I did call them again just to make sure they were serious as needed to let my GP know. YES, they were serious ..... all to do with funding, credit crunch etc. Heard it all before. To be honest, the person I spoke to just did not seem to understand.

I told her that if I decided to jump prior to December 14th I was sure my wife would give them a call to cancel my appointment. It didn't register. What a let down!


The medication that worked but was expensive....might be worth checking with your local pharmacy how much a months suplly would be, and then asking your GP for a private prescription. I do this with some things and my GP is understanding about it. Expensive to the NHS might actually be no more than a pound more than the prescription cost to you.


Thanks eggysue

I discovered today that the drug is a mere £8 per week. I persuaded him he needed to re-prescribe it ....... he did. I pay for my prescriptions (annually admittedly) but will not be offering to pay 'over and above' for anything - I pay far too much tax to make me want to do that.

Not really sure that dismantling the NHS is the right thing! GPs become 'Business Managers' ..... I don't think so!


Just as an aside, can you not get exemption from prescription charges? My husband has WG, loads of medications, so he applied through our Health Centre and got it. No fuss, no nonsense, no payments. Only brilliant thing about our practice!!


Thanks Nadine

No, I'm stuck with paying £104 per year which is not a bad deal. I'm not eligible for free prescriptions. Still, not a bad deal for all the drugs I get!


Hi there,my daughter goes to the pain clinic and had done for a year ,she has injections in the muscles in her neck,then as her pain is constant,she has to wait 4 months to see the Dr again then another fee months on the list again for her repeat injections ,it is ridiculous,she had trigger point injections plus botox one before,but even though they helped more than just trigger point injections ,she can not get funding again for botox.

I hate to put an even bigger downer on things,but I just wanted to warn you in advance. Sorry Sandy.


Well, i was kind of getting the hang of it anyway! Injections don't sound at all pleasant though! I told my GP I'd just start importing my own Morphine so I could be in control of my own destiny. He looked all serious ...... not much of a sense of humour!


Things have been that bad for my daughter that the doc have her morphine,I hate the fact that she is having to control her daily pain with morphine.

Hope you get a cancellation,I would just keep ringing to see if they have any cancellations.

Tale care Sandy.


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