Pain management Team: I have been waiting for... - Pain Concern

Pain Concern

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Pain management Team

Imagine1 profile image
28 Replies

I have been waiting for 4 years to see someone in the pain management clinic at our local hospital. What a complete joke. When are the doctors and so called specialists going to help a patient who is in considerable pain and saying to him I want to cut my foot off. He was a complete waste of time, why I went I do not know, I did say to my husband that it would be a waste of time and how right I was. I had to fill in this questionaire about my body parts that were affected and rate the pain 1 to 10, it all scored 10. The doctor didn't even look at it. I was weighed before this and for some stupid reason I have put on a stone in weight in half a day. I am on a diet and I know my weight and I told the nurse but she didn't want to know. The doctor asked me what my complaints were and I told him how long have you got, again he didn't want to know. He told me to take my sock off to look at my foot. He looked at it and it changed colour while he was looking at it. He told me that it looks like CRPS, I have already been diagnosed with this and it is in my medical records. He gave me no advice on how to deal with the pain or how to walk. He told me to take paracetamol and Ibroprofen which I take anyway which I told him, didn't want to know. He is going to write to my GP to tell them absolutely nothing. The best thing is which is a huge joke is if funding allows I am being referred to yet another hospital this time in Walton, Liverpool to be told that I have CRPS. 4 specialists have already told me I have this condition. So I am on another waiting list for another possible hospital which could take up to another 4 years and then to get more treatment after that it could be another 2 years on a waiting list. I asked him if I could have an operation or steroid injection, he said until he knows if I have CRPS then he can't say. He already knows, passing the buck yet again. So now I am no better off, no medication, no advice, nothing but a 4 years waiting list and that if it is funded. Has anyone else had these problems that I am having. It is a complete joke. oh and it would have been 10 years since the accident.

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Imagine1 profile image
Imagine1
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28 Replies
Dancer2021 profile image
Dancer2021

I too filled in the extensive questionnaire only to be told 'oh we don't need that'. If they are not going to even listen what is the point? I am still waiting for a steroid injection which was a 7 month wait now I'm told next year due to backlog. Apparently they don't 'rate' pain. Surely every illness has pain. Bonkers!!!

Imagine1 profile image
Imagine1 in reply to Dancer2021

I couldn't believe the lack of care I received. I have waited so long for these appointments for him to basically say he isn't bothered. Can he feel my pain? NO. Today is one of the worst days I have had for extreme pain. Nothing helps me at all, tablets are a waste of time, creams are a waste of time and now the pain is travelling up my leg and affecting my hip now, which I told him but again he wasn't bothered. I am going to report him because something has to be done for me. I can't live like this for much longer. I have no life anymore, I am just existing. I can't believe how long it is taking for you to receive a steroid injection. If there was somewhere I could go that will do it for me without having to wait any longer I would. I have no money but I would find it from somewhere just to be pain free and be able to walk.

Konagirl60 profile image
Konagirl60 in reply to Imagine1

Please, do report this doctor.

You are being brushed off. What are doctors getting paid for?!

Imagine1 profile image
Imagine1 in reply to Konagirl60

I definitely am going too, he shouldn't be able to get away with this. I am going to end up speaking with the Ombudsman like I usually do because he won't admit to my poor care. xx

Konagirl60 profile image
Konagirl60 in reply to Imagine1

Good luck. I hope you get the care you deserve and need.

Imagine1 profile image
Imagine1 in reply to Konagirl60

Aww thank you. xx

mauschen profile image
mauschen in reply to Imagine1

Have you tried referring yourself to the physio ?

Imagine1 profile image
Imagine1 in reply to mauschen

Yes I have. I have had physiotherapy already but the problem is because it is 4 years since the injury and i have CRPS the physio can't treat me, because of my condition just moving my foot is agony, and they can't touch it. If I had physio at the beginning and not left then I wouldn't have got CRPS and I would have been able to walk. The accident was 2 months before Covid and we were in a lockdown. That was there excuse for not treating me.

mauschen profile image
mauschen in reply to Imagine1

Are you in the uk?

Imagine1 profile image
Imagine1 in reply to mauschen

Yes I do. I live in Manchester, England

Haz58 profile image
Haz58

I was referred for pain management by my GP a year ago. I got a phone call from a CBT woman. I've had 2 phone call appointments and not learnt anything new yet. total waste of mine and their time. The phone conversation lasts 10 to 15 minutes, if I can hear her as she talks through a pc and it's done via Clinical Health. What a waste of NHS money!

Imagine1 profile image
Imagine1 in reply to Haz58

Pain management are a complete waste of time. What help do they give us? NONE! it is not their pain that they are feeling so they don't care. There is a lot of things that I know about my illness and they think I am thick trying to tell me that the pain is in my head and is not real, how do they know? complete waste of time.

MSTKing profile image
MSTKing

Walton is much better as a pain hospital as it is attached to a neurological hospital. I hope you get better care soon.

Imagine1 profile image
Imagine1 in reply to MSTKing

I have heard that Walton is a good hospital, I will believe it when I see it. I have been to so many good? hospitals which have been rubbish. I can't afford to keep going to the hospital for treatment when there are supposed to be good hospitals closer to my home. Thank you for caring.

MSTKing profile image
MSTKing in reply to Imagine1

my last time at their pain clinic was a long time ago - so things may have changed…

Scotsman53 profile image
Scotsman53

I was diagnosed with CRPS, twice in fact, long story. But it's so much better I'm tempted to say I used to have it. What I did was treat it as The Mindbody Syndrome (TMS), which is also called neuroplastic or psychogenic pain. This is working for me and it has for others, books have been written about it. But because you have to face up to some hard truths about your life and yourself, it's not for everyone. This is one of the books, there are websites too. amazon.co.uk/Defying-Verdic...

mauschen profile image
mauschen in reply to Scotsman53

There are many different types of pain, mainly grouped under acute or chronic which I believe is a gross generalisation because pain as you know is complex.

I am glad that you have found something which works for you.

Recently, I attended a pain clinic organised by the physio department. It was a no touch clinic but some of the exercises definitely brought benefit. Like everything have tried, this was short lived. Nevertheless, someone else might have derived greater benefit than I.

I believe it is important to talk with someone in order to work out whether deep seated thoughts could be hindering progress. However, in my case, I found the questions asked by the physio to be of a very personal nature but I was never informed whether or not the physio held an academic degree in psychology or psychiatry. This made me feel very uncomfortable answering questions .

There are nurse led, physio led , physician led and multi professional led pain clinics that I am aware of. All approach from different perspectives therefore, are not comparable .

Yes, agree that some people need to take a hard look at themselves. Perhaps pain is of deep rooted psychological origin and something like cognitive behavioural therapy might help. At the end of the day, the subject of pain has not been researched nearly enough.

Dancer2021 profile image
Dancer2021

and then they say it's 'anxiety'. No wonder if we're all in pain with no help!

Judo1010 profile image
Judo1010

I fully understand your annoyance and frustration. After a serious RTA which occurred in and around the year 2000, and pain has gotten progressively worse since then. For the past 12 years I have complained about the pain in my neck, shoulders and even my head sometimes. I did get an appointment with pain management, where I attended once a week over a period of six hours, over eight weeks, my own opinion was that it was a complete and utter waste of time. I then attended muscular skeletal, where all I Received was exercises but no actual physical therapy. To this day, why I do it I don’t know, but I’m waiting for yet another appointment with muscular skeletal, which up to now I have been waiting for some 16 weeks. I did contact a private physio, who until I get a most recent MRI scan, is reluctant to carry out treatment, but what he did say. In his own words, was that Muscular therapy was the biggest waste of NHS money, and given the time and treatment they have given myself, I would agree with him. In fact my own name for it is talk o therapy as that’s all they do, and give exercise, but as for me, the exercises I was given, after a week, I was in more pain than before i started, but they didn’t appear to take any notice of what I was saying. Like yourself I could make comment for ever, in fact I could write a book, for the number of years that I have tried to get help, this including changing surgery three times, but the result is always the same. Good luck.

mauschen profile image
mauschen in reply to Judo1010

My experience has been similar to your own.

However, I pay for a private physio. Not because I want to or have money to burn, I don’t! If I don’t pay for physio, my mobility is drastically reduced very quickly.

Talking physio has been totally useless in my case. Hands on physio can at least stimulate blood flow to the area which in turn increases blood flow to the area and can lessen pain.

Technique is of course is crucial.

cyberbarn profile image
cyberbarn

There is a saying that it takes 17 years for things to get from bench to bedside. One of the 'bench' researchers into CRPS is professor Andreas Goebel. I believe he is at the Walton Centre.

Here is a webinar that he gave a little while ago. People might find it interesting to watch as well as some of his other work while you wait for your appointments at the pain clinics.

youtube.com/watch?v=YfWiL7G...

Imagine1 profile image
Imagine1 in reply to cyberbarn

Aww thank you for the advice and telling me about Dr Andreas Goebel, I will watch him on later.

Delboy1 profile image
Delboy1

Merry Xmas

I just want to tell you that the Walton Centre in Liverpool is the best CARING hospital in the UK!

I had to go through a similar thing to yourself visiting 3 other hospitals and specialists previous to the Walton.

The first thing they do is take MRI scans so they know what they’re talking about. I’ve got Spinal damage and they of course didn’t fix it, however, I’ve never been to a hospital with such dedicated genuine staff and Dr’s they never gave up until I was able to live with minimal pain.

I’m so sorry your in such pain and I sympathies with you as it’s the worst thing and what’s more is no one knows how much pain you really are in.

Anyway, try and bare throyit for the time being knowing that your going to the right hospital in the end.

I now have been going for 3yrs every month. Good luck and Please tell me when you eventually get to see them!

Lots of love

Derek

Imagine1 profile image
Imagine1 in reply to Delboy1

Aww thank you Derek.

I had never heard of the Walton centre until my specialist mentioned it. I know Liverpool town centre but apart from that I don't know where it is? my family are from Liverpool but I don't think I have ever been to Walton before. I mentioned to my GP about being possibly referred there and she said if I can't afford to go, just go the once and then get a telephone conversation. I hope that they can sort me out because my condition is getting worse and I don't want to have to give my job up.

Delboy1 profile image
Delboy1

You should be able to go as an NHS patient.

Imagine1 profile image
Imagine1 in reply to Delboy1

I thought that too, but my specialist told me that if funding doesn't allow I can't go. Which I found strange.

Lucycal profile image
Lucycal

Contact your GP and ask for a second opinion. I had to do this when the Orthopaedic Doctor completely disregarded everything I was saying. The second Dr was brilliant.

I hope you find something to help you soon xx

Imagine1 profile image
Imagine1 in reply to Lucycal

I saw my GP last week and I saw an MSK specialist within my GP's surgery and all he said was I had to wait for my appointment at the Walton Centre, I asked him how long it would take and he said up to a year. A year that will be 5 years since I had the accident and still nothing has been done. I know what is wrong with me but again they won't do anything. Since seeing the specialist the side of my bottom is now so sore and achy that I am struggling to walk even more. I am not surprised though I have been limping for 4 years and I can't walk far and now this. It looks like I have another condition having read up about it and it is because I broke my ankle, nothing was done and now all this is happening, I tried to sue the hospital, I was told it was successful after 3 years and a week before I got compensation, they denied everything, so in the end I got absolutely nothing and they have left me like this. It is shocking what they have done to me, and they have got away with it. xx

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