Somewhere New to Try if You Live Outside London

[alastair70]

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.

thewaltoncentre.nhs.uk/99/p...

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)

Other Information

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!

britishpainsociety.org/

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.

Complaints

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

Al

[Calceolaria]

Thank you Alistair. That's a great post, one I need to re-read.

[alastair70 in reply to Calceolaria]

Thanks, I just hope my experiences can help someone else.

[mimimouse]

Thank you.x

[Charli93]

Thank you so much I'm going to phone the Walton Centre on Monday. Cannot explain my excitement at reading this, I've looked at the centre before but must of just forgot. I'll follow the route you did and we'll see! Which condition do you suffer from? Also I wonder if you could give me some advice as to what to say on the phone them?

Many thanks

Charli

[badbackjonny]

I'd like to add something to this. (I hope you don't mind Alastair70) I have been going to the Walton for a few years.

If you go on to their website and look through the consultants bios (this might take a couple of hours) you can then go you GP and ask to be referred to that specific doctor. They list their arias/conditions of interest not just the field they work in.

It speeds up the process and helps avoid wasted visits as you might get sent from one Dr to another if you get a general referral to the hospital or to a clinic. They are all very specialized there and they all want you to be under the best person for you.

I hope everyone has as much luck with the Walton as I have had.

[alastair70]

Thanks for that Johnny, no problem at all. I suffer from chronic nerve pain to the stomach from repeated hernia surgeries around my stoma site Charli93.

I just phoned the research centre and told them about my condition, they got a research sister to phone me back and she went into great detail about what sort of pain, how it felt then she said I wasn't eligible for any trials but she suggested a Dr. Bernhard Frank, so I'm going to give him a try

[nedd]

Thanking you for taking the time to disseminating and posting this.

Cheers

[alastair70]

I'm glad its been some use, it came to me from a lead pain nurse and she raved on about The Walton Centre so I just thought it only fair to spread the word. Its good that badbackjonny has joined the discussion as he has experience of the place. We should create a post of the different centres around the UK that specialise in pain management for newbies, cause its taken 5 years for me to find out about The Walton Centre!!

[karmashadow in reply to alastair70]

Alistair, Hi there 😊

I just wanted to join the increasingly large list of people that have thanked you for the Information with reference to the Walton Centre.

I think it may be a good idea to broach the subject with my g.p. I'm not sure about how I can use the facilities of a different Health Authority?.

After 3 ops on my leg my g.p referred me back to the local hospital and the Chief Registrar of Obstetrics, who had asked me about back pain during his examination, I gave the response "It's probably due to the way I'm walking!". I didn't want to learn of new problems!. I hated the pain and being sedentary.

I was finding my occupational therapist very helpful along with some great equipment provided to help, I was still determined that I was going to jump out of bed one day and go for a run. My g.p after receiving the letter off the Chief Registrar of Obstetrics of which I also received a copy, and yes he'd written in detail including the comment I'd made. My g.p then said I should take one day at a time. It took 6yrs to accept, and it's still a problem to me because of the cause of it all (very long story, one day I'll be able to tell it). It's extremely painful tho!.

Thank you very much for the info,

kind regards 😇

[alastair70]

As far as I am aware, you can go anywhere you want to. I live in West Yorkshire and the other year we went to see a Professor of Urology in Manchester for a second opinion, but ended up staying with the doc's in Yorkshire. My local pain clinic are the people who suggested I goto the Walton Centre in the first place so I can't see a problem.

As badbackJonny said, you should do your research into who you want to see and then phone the research centre to see if they having anything that might help you. Make sure you tell your GP the consultants name once you have done your research.

All the best