The Walton Centre
So for everyone who doesn't live in or near London, I have been given some advice. Yesterday my local pain clinic told me to contact The Walton Centre in Liverpool.
According to my local pain clinic manager The Walton Centre is world renowned and is the best outside of Harley Street for pain management and research.
She suggested I phone the Neuroscience Research Centre (0151 529 5666) where someone took my details and told me that a research sister would phone me back hopefully the same day. An hour later a lovely lady called back and went through my condition with me, before explaining about some of the trails they are currently running.
Unfortunately I'm not suitable for any of them but she did recommend that i see a specific consultant who deals with my type of pain. They also do different types of pain management courses, but I went on one last year through my GP, there website is well worth a read.
I then emailed my local pain clinic and explained what she had said & they are more than happy for me to go and see this other consultant and stay under them at the same time. They are even writing to my GP for me to start the referral process (it takes 3.5 weeks to get an appointment that is non emergency at my GP's)
Did you know there is an exhibition next week (21st to 23rd April 2015) in Glasgow at the SECCheld by the British Pain Society called the Annual Scientific Meeting where all our pain consultants and nurses (providing they can get funding) are going, there are lectures & trade stands and my local pain consultant has said he will have a chat to his friends there to see if there is anything else he can try for my condition.
The BPS hold this exhibition every year, next year is next May 2016 in Harrogate, North Yorkshire, and although it is meant for health professionals I've been told if i want to go there is no problem going as it is only 40 miles away.
If it was up to me, there would be the same exhibition with research lectures and trade stands that us the sufferers from chronic pain could go to to see if anything new has or is coming, but at the moment the BPS thinks all we need are leaflets telling us about the different drugs and standard treatment used and how to cope with pain. I mean for goodness sake there has been one for people with urostomys (which I have) for years, why not chronic pain sufferers!
No doubt I'm being a little harsh on the BPS, their website is full of informative reading material, its just sometimes i think some of the professionals like to treat you as a number rather than a human being.
I have found that if you are going to get any sort of service from the currently massively overworked, underfunded, and over stressed NHS you have got to try and make it work for YOU, meaning YOU have to do your own research, YOU have to demand answers to questions, YOU have to test consultants & registrars to make sure they are tell the truth, (may times in the last 13 years of treatment with various departments I have found both reg's and consultants bending the truth to suit them and on two occasions a registrar lied straight to my face, and continued to lie when i challenged him).
But MOST of all YOU have to keep pushing and pushing to make it work for YOU. I know it's hard, and there are times when all you want is for someone to sort you out, but you can't give up challenging what is being said and done to you. If YOU don't think that your current treatment is right for you then YOU have to do something about it. I'm sure I'm teaching you all how to suck eggs, but my GP has told me, they can't treat me for my pain, I'm too complex a case, they can't treat my water infections, I'm too complex a case, all my GP seems to be able to do is prescribe what my various consultants want to happen and write referrals.
The best piece of advice I can give anyone is to find a consultant you get on with, that you trust, that you can delvelop a repore with and then get his or her email address, and only use when you really need to.
I'm very lucky, all three of the consultants I see, have given me theirs and on the rare occasions that i have needed to use it I was surprised to get either a email back or a phone call within two days of me asking for their help. Naturally I'm not emailing them every other week, I keep it as next to last line of defence, but it has worked for me.
If you have a problem or feel badly treated the best way I have found to get it resolved is to send a complaint in writing to the Chief Executive of your local trust along with your trust's PALS service and of course the consultant or department involved. You will be surprised at the response you get when you involve this combination of people rather than just voicing your concerns verbally. For more detailed information please pm me
Anyway, hopefully, someone will find this very long post useful, and if I can offer any more help or advice don't hesitate to pm me.
Have a pain free day as possible and keep fighting