Have you had difficulties communicating with healthcare professionals, especially GPs and physiotherapists? Do you feel that your pain is understood? What would you like to see done differently in the management of your pain?
We are hoping to set up a project that will carry out research and propose solutions to improve pain management in primary care. Your experiences can help bring the issues alive for us and for grant funders.
Post here or get in touch with us at media@painconcern.org.uk.
Well my first appointment with the Pain Clinic took 7 months, saw them, they said I would see them again in four months, they gave me an appointment. Two weeks before they cancelled it and gave me another 4 months later, that too was cancelled by them, they gave me another appointment, that too was cancelled, they gave me another, that was also cancelled, so 11 months finally got my second appointment. The review was to be six months, I'm in month 8 and not even had an appointment 'date'.
So management of my pain - is really non existent. In fact a documentary is on next week made by the BBC about the lack of pain management provided for me. Sat here, still waiting for my next Pain Clinic appointment
sadly as with most of the nhs these days,pain management is a joke really. The nhs is over stretched,manned by many trainee or inexperienced staff in its 'lower' ends(and not so lower ends) , has no money for therapies that may well help, insists on dishing out pills for pretty much anything. I will email but had to comment..my faith in the nhs is very lower and I feel within the next 10-20 years it will not exsist except as an historic memory of something once pretty amazing.
Quick blow trumpet for Scotland. Next Wednesday 29 May will see Chronic Pain debated in the Scottish Parliament. First time ever such a debate will take place. At long last something will be done to coordinate NHS, Pain Clinics, GPs and most of all - the patients. Well done everyone who has campaigned so hard.
My own GP has been brilliant about my pain. He has taken my concerns seriously and gently encouraged me to try things but also respected my decisions to stop taking medications that were causing side effects. He even tried a bit of acupuncture on me. He appears to have a good understanding of the effects of chronic pain on mental health and functioning in general. I feel that we have worked in partnership and I probably visit the surgery less now because of this.
This is in contrast to another GP I saw first about my pain. It was dismissed as being down to anxiety, and as I had a history of post-natal depression she frequently made reference to this, and only referred me to a consultant when I agreed to take amitriptyline.I'm sorry to say that I had a similar experience with a pain management consultant who implied that I was making it all up when I failed to respond to treatment he had prescribed.
I think there is a tendancy to look at people with chronic pain who do not have an obvious cause or diagnosis and assume that the pain is psychosomatic. It took 6 years to work out the (physical) cause of my pain.
It doesn't help that pain management services in secondary care are so over-whelmed and under resourced, with very lengthy waiting times for treatment and appointments. It's very hard to explain what's wrong sometimes and took me a while to learn which terms the pain specialists used. For example, I had tingling & itching but didn't know for ages this was a type of pain so I didn't mention it, and didn't realise that when they talked about neuropathic pain that was it!
If you go to an appointment at a hospital they will maybe look at one aspect of your pain and send you off to take some tablets. It can then be several months before you get a follow up appointment, so what do you do in the meantime if it doesn't work? When you go back you have to start all over again with the case history, and if you've forgotten to tell them something /ask questions things get missed. I have pain in several places but sometimes they tended to focus on one area and forget to ask about the rest. As a patient you don't always think to ask if that's right. And if your doctor or nurse has tried really hard to help you and you go away and do your exercises and take the tablets but things don't improve you feel that somehow you're to blame and don't really want to say so. No wonder people sometimes feel very negative about healthcare.
The most productive pain clinic appointments I've had have been a bit longer than normal but that bit of extra time makes all the difference. I now have regular appointmenta with the same doctor, and I feel that she has got to know me & my pain a bit and therefore the appointments are more efficient.
I think in this society we expect chronic pain to be cured. People have operations and get better so there is that same expectation with chronic pain. We take "painkillers" and expect them to take the pain away completely. People still talk about "Pain control" which implies that the pain can be made to go away. I don't think we always realise that pain "management" means just that - managing but not curing. This should be discussed more openly with patients. Perhaps doctors think they are open about this? Even though I understood this term it took a long time before I was ready to accept it and I still sought out a total cure. There is no psychological support to deal with the issue of acceptance.
I have generally had good experiences with physios, provided they can find an obvious cause for the pain. One physio told me I'd just have to live with the pain, a remark I find rather insensitive and unnecessary as aren't all people in chronic pain living with it? Even if there're nothing the physio can do there are better ways of saying this. On the topic of physio, this was recommended by a pain management consultant who then told me I couldn't have any due to where I lived. No one else has mentioned it since and I have had to refer myself via occupational health. I'm paying for it privately now, and good as the NHS physios are, you are rationed to a 20 minute appointment for a very limited period.
I work with physios who do seem to work very hard on managing pain but even then I have heard them comment about patients "Well, pain patients do seem to fixate on their pain a lot". Well yes, we do, it can take over, and it's easy when you have never experienced chronic pain to tell people not to fixate on it, but very hard to do and it's not something you can do just like that. So I think doctors and physios etc should have lectures from pain sufferers as part of their training.
Please stop using pain scores! Or at least rely on them less. They are probably very helpful if someone is in acute pain from an injury & needs morphine. But if your pain varies and just happens to be not too bad on the day you go to the doctor / physio you are then in the dilemma of either rating it very low & running the risk of not being taken seriously, or rating it higher and not being believed. I have heard health professionals dismiss many patients who rate their pain as 10. The best question I was asked about describing my pain was by my current consultant, who asked, "What would you draw if you had to draw your pain and how it feels?"
I have learned about pain by reading about it and getting information from the internet. No professional has ever sat down and explained what chronic pain is and how it differs from acute pain. I have a little medical knowledge but imagine that some people would find it difficult to do this self-research. I am a great believer in knowing what's causing your pain makes it less frightening and easier to cope. If you have a long term condition such as diabetes you have nurses who will teach you how to manage it. Why doesn't this happen for pain patients?
Sorry this is such a long post. I hope it's useful. Getting the right support with my pain has been a very long journey. When it's been good it's been good, and when it's been bad it's been appalling. It seems to boil down to a lack of resources and sometimes a lack of seeing patients as people. Some basic things could put the latter right.
That was absolutely brilliant - well written and so descriptive. You are so right about prescribing a bunch of pills and so long between appointments. I've just recently started seeing a different GP - I'm hoping things will improve. Thank you for sharing, and I too have lost faith.
Brilliant - I am going to print this and read again at leisure. It's amazing, I didn't really know that one of my symptons 'tingling and itching' which sounds so innocuous - but in reality - is a painful nightmare - is called Neuropathic Pain. Look at my post about a recent Miracle NHS.
I wonder could we not start 'An awareness on chronic pain' - & start sending our Bloggs to MP's, Dr's, NHS, Homeopath's & other people of influence? What do you & other people think? I might well put out a Blogg next time I get some energy. But it does seem that there is a general concensus on what is right & what is wrong with the present NHS system for Chronic Pain Management. It could be that having a
a patient led system would make much more sense & be more practical, at least we know what we want & need & possibly a desirable direction in which the help could take.
I really do believe that chronic pain in all it's multifaceted uglyness is probably one of the major illnesses today - but is not even called an illness.
I have only recently found this site and found that it's an amazing site. The knowledge and the help are inspirational. Thank you one and all.
It's sponsored by the drug company Pfizer - I am in no way promoting them, but thought the explanations were very good.
I would also recommend "The Pain Chronicles" by Melanie Thernstrom. She is a journalist who suffers from chronic pain, so along with some very factual information she also shares her journey of dealing with pain herself. There is a very good chapter about the relationship between patients and doctors, taken from observations she made when visiting pain clinics in America. I borrowed the book from my library but have seen it for sale on Amazon. (That's enough product placement / big comapy promotion for one blog).
I do think that patients and health professionals need to work together - patient-led is not necessarily best though. And yes, I am not ill, but I have a condition that sometimes makes me feel dreadfully unwell, and brings about symptoms that many people would succumb to. That in itself brings guilt and a whole lot of different problems around not wanting to trouble the NHS.
Sorry about that. I posted it a long time ago so maybe the site isn't there anymore (if that's possible, I am not very "up" on technology).
It was linked to a campaign by the drug company Pfizer in relation to either the medication pregabalin or gabapentin, and it had some brilliant descriptions of nerve pain, such as itching or tingling and the sensation of something crawling under the skin. I'd been suffering from all of that for ages but hadn't ever thought of it as "pain".
Hope you find it eventually, sorry I am not being much help.
I could have written this myself. Four years down the line my daughter still does not have a diagnosis and has been told she never will have. Last week her GP informed her he had written a letter to her consultant stating he totally disagreed with her medication. She was outraged as it has taken two years of trying various drugs to get her any relief at all. Fortunately for her she has an amazing PC and he informed her yesterday he had phoned the GP and for now the medication will stay the same. We would love to know what he said to him!!! The care for pain sufferers is quite simply appalling and you are so lucky if you get one health care professional who hangs in there and is knowledgeable, understanding and helpful.
Great post and I agree with much of it. Many health professionals are undertrained in chronic pain management and are just as lost as we are at trying to find a solution. Trying to explain chronic pain to someone who has maybe only experienced toothache or a rumbling belly is very difficult.
Funding should be spent on staff training first and foremost. Chronic pain should be a specialist subject and not something that individual staff who have an interest tinker away at themselves (but thank you to those that do). I recently discovered that anaemia can cause leg pain. How many people are checked for this when they mention leg pain? Its so easy to sort and without pain killers. Sometimes when focusing on the main issues simpler causes can be overlooked.
Alternative therapies should be available on the NHS. Yes they may not directly help the pain, but painkillers are handed out and despite having a very random result, are continually handed out. Alternative therapies sooth the mind as well as provide some comfort in the body. And if people can escape their pain for an hour a week because they have had a massage, then that is a bonus.
Specialist gyms. I have been turned away from so many gyms and exercise classes because my injuries are considered high risk. Even when I have said I would sign a contract stating I would take full responsibility for any resulting increased pain, injury etc, this has been refused. We need low impact, stretching and a variety of different exercises to do that are lead by highly trained staff, who can appreciate that one day you may be able to raise your leg 5 times but the next time you can't, but you could do something else.
We need proper mental health support. Not only somewhere to discuss our feelings and problems, but one that teaches meditation and mindfulness, and other techniques. Maybe including art and music therapy which could be further developed by the person into a distraction strategy.
Nutrition. It would be really helpful to be able to learn about the vitamins and minerals that may be affecting our health and/or contributing to our pain. And how to eat heathily without putting on weight (from reduced activity - ref gym).
Homeopathy. I know there is a great debate on whether this works or not. But if someone believes it does it should be available.
Herbal remedies. Again, whether it works or not, it should be available for those who want to try it.
Homeopathy and herbal remedies could be set up as a partnership, where the NHS could fund it. Even if it was for a year per patient, so they could try different things to find one that helps.
It would certainly be worth looking at the German model for rheumatic treatment. Not specific for pain but addresses pain and mobility without a heavy use of drugs. The Dr runs a centre full of different therapies - mud baths, hot/cold water therapy, infrared heat, massage, pilates, alexander technique etc.
Respite. A place to check in and give carers a break. They can come too and be educated about aids, pain management in general. Mental health support for them too as they are often stuck between the patient and the medical staff, and getying used to a new person. They grieve too for the person they lost to chronic pain. Extra support for young carers. No child should have to look after a parent with any illness or condition until they are 16.
None of this is new ideas. Many of the larger charities offer aspects of this to their client group. And the good thing is we know it works because they keep offering the services. Saves an awful lot of research and funding.
I have only just seen your post from two years ago as I have only recently found and joined Health unlocked.
What you say is absolutely right. In West Berkshire they have been offering 10 week "Fit for Life" courses free of charge, which do a little of what you say with regards to the exercising and nutrition. The German model sounds like a great idea. I am aware there is a centre in London that offers these sort of therapies for people with cancer. Those of us with other disabilities are not helped unfortunately. Perhaps this would be a business opportunity for someone if they could persuade the CCG to commission such a service?
In the long run it could improve peoples' well-being, so that they might need less drugs and might be able to work again, anything is possible
What drs fail to understand about chronic pain is that once you've done the rounds, tried the medication and nothing still works effectively enough to be considered helpful, you are left with a choice, carry on with ineffectual help because they have prescribed it and we have sought expert help.
Or, we can use alternative therapies to make us feel better for an hour or so at a time. They don't cure us but NHS medicine doesn't either. It may relax us, it may reduce the pain, it may give us a break from it. In my experience, that is a good outcome. It's not perfect, but it does help make things bearable.
As for a business idea, I have been part of working group looking into this, but costs are prohibitive as a start up. A canny pharmaceutical company (because they have the funds) could set them up and use them as research into what actually helps chronic pain, and how important the feel good factor is for someone who has no escape from the pain. Even if they reduced therapy fees by half, that would be a huge help to us. Because that is where the market is for chronic pain, not pain killers that don't work. Lets hope one day they catch up with the rest of us.
Is the working group still going, or are you still in touch with the people involved? I have previously been involved in setting up two new health related charities in Berkshire and in was successful in fundraising for several other groups. Did you have anybody on your working group that had financial experience? I recruited a qualified accountant to act as treasurer, for one of the charities, by going through the accountants section in the telephone directory.
Was this going to be a local or national organisation, if it was established?
How do you communicate when 95% of the medical profession have never even heard of your condition even though it's the most painful incurable one in the world. Had it made worse by being given 2 of the 3 worst possible treatments. Had it made worse in 3 different hospitals.
One Proffessors first words to me were You are an expert on this and know more than I ever will, 3/4hr later and despite telling him that I had been diagnosed by 2 different specialists he insisted I didn't have it.
I am feeling very low at the moment, not to mention the pain.
My GP has no interest in what I have to say , she just keeps her eyes on the computer.
When she did react to my explanation it was a smile that said it's my age and she said
I will have to soldier on.
She refused to do a blood test, and even tho I am on Atenolol and Lasartin potassium for
high blood pressure she refused to take my blood pressure.. I was under the impression that GP's have to monitor that condition.
I have ulcerative Colitis, which is in remission at the moment.
I also have c.o.p.d
And last but not least I have Osteoarthritis in both hips and also in my spine due to an old injury. This is where the pain comes in , the pain in my legs is unbearable, I have to use a stick to walk but obviously doesn't stop the pain.
My GP has put me on Pregabalin twice a day also Cocodamol in between times.
I have been on this for a year now, sleepy most of the time , terrible memory. and still in
terrible pain.
I want to change my GP but am afraid I might be looked on as a trouble maker,
What should I do , I am frightened and live alone, I have family ,but they have their own family
to look after, and jobs to go to.
Thankyou for reading this , I know that many of you are worse off that me, I must sound a
Rhapsody, you need an advocate or a supporter when you see your GP, who really could have taken your BP or bloods ! Why not ? You can keep an eye on your BP by getting a simple machine to use at home but don't be taking a reading too frequenyly and make sure you have been sitting quietly for five minutes. The NICE guidelines suggest taking three times a day and take the average of those readings as being your actual BP. Or most Pharmacists will take your BP no problem.
Have a word with Age Concern about how to get a supporter.
Pheonixalight 79 years - I know what you mean about your GP - I sort of worry a bit that my GP thinks I'm not a very coherent person and not very good at answering his questions, I get barked at "Answer my question - your not aswering the question" Meantime I'm sitting there weeping my shakes out of control, my life out of control, & I feel such a hopeless mess - & the GP sounds as if he has nothing but comtempt for me. And I leave the surgery feeling worse & suicidal.
I would like to find a way to be able to regain my self esteem - have my GP to tell me "How well your doing, it's not easy for you, lets see what I can do to help" Boost me up - don't kick me when I'm down - basic humanity.
Anyway it's good to get it off your chest - There I've just got it off my chest, & I feel better for it.
There seems to be some good advice on the following blogs, take care and know that you are in our thoughts - all best wishes.
I have only just seen your post from one year ago as I have only recently found and joined Health unlocked.
I sincerely hope that your situation has changed for the better in that year. To come out of a GP surgery, feeling worse and also suicidal is appalling.
After reading your post and others on this site, I realise that I am very lucky to have a really good, caring group of GPs. It does not banish the pain, but at least I know they are doing their best to help me.
im on same meds,feel sleepy all the time & memory terrible, cant even remember how to use this site, get on to it or other users names, so hard to reply to or follow threads. Have had chronic back pain on and off since 1st baby 27 years ago when big mistakes made FILES CONVENIENTLY LOST! Had more constant chronic pain since 39 so not down to age. like u have some family but they live busy lives and stuck at home as had to give up work, car, social life. I know many are worse off like u say but still hard to go on some days so your determination is putting me to shame and you are inspiring at your age. If you can keep going, then so can I. good luck
Poor you. I sympathise so much with you because of what it does in the long term over your mental health that makes you tense and muscles tighten , for most people do not realise that people who suffer with pain try every movement to alleviate (or try ) to give relief from the positions that make you worse, so that when you are at the end of your tether and go to doctor with the symptoms and he or she suggests most of the thing's you have tried or you can't take the side effects of the pills offered, so it may seem that you are not listening or taking in the advice or ignoring the advice, plus your worried that you will be seen as a time waster or that it's in your mind or depressed, etc.,etc.
So the Human to Human issue can be as much to blame for so many problems, and the one that gets me if you manage to get anyone to listen with all ears , then you at the end of your tether (possibly rushed getting it all out, or forget something, a pain you forgot to emphasise ) you tend to feel ashamed for moaning, and then try to stop digging (as ' by now you see it) and that sounds conflicting and may sound contradictory to the listener (or you think).
But Rhapsody, no you are not a moaner, for I really can see that you are anything but a moaner, and No your pain is as painful to you as anyone else's is to them and anyway if you can't sound off on here where can you sound off best to you
I saw about 6 GPs and a gynae before one would take me seriously - my condition worsened to hurting all the time. I saw another 4 doctors. My GP admitted to me she didn't know what was causing my pain and that she would have to "experiment" with different treatments. These caused further problems. After three months of agony she put me on amitriptyline and then thought it was job done. I don't think they have the time or the inclination to do any more. There appears to be no attempt to try and get to the root cause of the pain - or offer the patient any form of explanation. Also they don't appreciate (and I guess this is difficult unless you have actually experienced it) how devastating it can be living with chronic pain, the relentlessness of it, the isolating effect it can have & how your life changes. I think this aspect of chronic pain needs to be addressed.
At my GPs they seem to be very reluctant to make referrals - in desperation I said I would go private but still they would not write me a referral letter for the Pain Clinic - the attitude was now you are on the tablets - you don't need to bother. I saw a different doctor as the pain had spread into my back and hips and she just told me to double my dosage. I went to the Pain Clinic without a referral and the doctor there did spend an 45 minutes talking to me. It did make a huge difference to talk to someone who knew about the condition, listened, didn't think it was all in my head and came up with a treatment plan.
I have been to one physio and had five sessions so far. The physio is very pleasant, always explains what she is doing before she does it and constantly checks my pain levels. Overall physio has helped but the pain tends to creep pain in between sessions.
I have learnt the most about my condition and chronic pain by researching and reading for myself, forums like this and through this understanding more about how to manage my condition. I feel that there is no point going back to my GP about it.
I agree that alternative therapies should be available on the NHS together with support for the mental side of the chronic e.g. CBT, relaxation therapy, compassion therapy etc.
I have had nothing but crap treatment from the first to last, and am still trying to get help but now that phyisotherpy is not offered to severe chronic pain suffers because it long term help we need not 3 to 6 appointment then left to you own divisises.
I for the first 7 years of my illness was put down to depression, not Pain causing the depression, off course your going to get depressed if no-ones lessoning to you and you body is screaming pain. I think this is the first point to try and improve on as pain is not visable so the doctors are at a loss what to do !!
Secondly don't send patients over and over again to pain management programs just because the medical profession is incompedent in dignosing pain.
Third make more of an effort to finding the cause as many of us are just labeled with having failed back surgery or fibromalgia this is not good enough we need to be informed good or bad what is wrong even if there is no cure. with this knowlegde we the have choses not just leave us in limbo !!!
We ought to band together - and not have to be left in "LImbo' as you put it. What a way to be treated, makes my blood boil.
But I have recently had an amazing NHS experience - at a Falls Clinic. I am still absolutely bowled over by how sweet, caring, helpful, respectfull, wonderful, wanting to help me feel better etc - yes I know sounds impossible - but it's true. And this to me on one of my worse days - when I go unto shock and the whole side of my body freezes and I can't move. And they cared that I felt so bad and rallied round and these people you could tell loved and were good at their job/proffesion. They were happy people good at what they do.
And also there was a trainee physiotherapist who was getting excellent training from her thoughtfull, caring instructor, and they both respected one-another. It was a like a Shangrila on earth.
Now this Falls Clinic aught to be the Norm, not the exception. I thought it should be known that there is still exceptional care out there - if only it can be accessed.
At this moment in time -I have only met the group the once - and they asked me to go back on my Meds which I had stopped taking - due to I thought they were not working for me. They said they would see me weekly and supervise how and what I was to try. I expect I will be getting physio and possibly other treatments - so fingers crossed - but even the kindness made me feel better.
All best wishes to you & everyone
Hello
Most times I feel that my GP is very good, when I can see Him, has an attentive manner and if in pain will generally refer me on. It is getting specialist treatment that can be a little trying.
Iam booked to get two scans of hands, it has taken a while and the system is so busy up here that the clinics for these is held on a Sunday, that is fair enough as I was expected to go last weekend, I was returning from holiday, so it had to be cancelled the next time they had was a months time and my fault was on holiday once more so it is working out that it takes a month for these tests, so now it will have taken four months to get the scans done. My Specialist had done the scans himself and found changes about two months ago.Suppose He wants verification
With regard to pain control I have been to two different Pain clinics and taken all the courses associated with this, So I have worn the teashirt so long now that the medics realize that I am
controlling my own symptoms and prefer to give assistance when required as they know will shout when things go wrong when I am having problems. At the moment I have check ups every three months with the rhumi nurse and back up appointments with the specialist. They are both very attentive. One problem I have is that I lost my old specialist to retirement and now it is a case of getting too know you, as I have seen three different ones since then, I suppose that will eventually change and become sorted soon.
In the past was a member of LINK so after I get over a health crisis I will be joining Healthwatch that will deal with patient problems etc.because one of the main problems associated within the service is a general problem of patients not been able to explain what they want in the NHS environment My interest is in Mental Health and Alzhiemers, so I can act as a friend and support. Although this depends if they want me too help in Healthwatch,environment as I have been unable to assist lately so I have not been to meetings for five weeks because of poor health, and need to contact the local office
To assist my practice I am on the patient participation group, I personally find that if I can help and suggest, this helps both practice and gives patients a voice in the clinical environment, helping doctors to understand and pick up problems that they have on the other side of the desk. Also it helps the practice bring in new ideas for the benefit of patients.
Normally I find that if you can explain, they will understand what is wrong. Many patients become disgruntled as sometimes they need support in explaining what is wrong, with their family members when they are probably in a stressful situation and the NHS can be too busy and unable to give that support when needed. The volunteer is a go between and will act on their behalf
Interesting idea's here Bob, it would be good if I could get a volunteer to be my needed support when I go to the GP. Someone who isn't like me 'In a state' I have a daughter who does this with the Homeopath that I and my daughter see. My daughter understands Homeopathy and she understands me - therefore she can be precise and discuss logically what is going on with me and she talks to the Homeopath and then relays back to me what to do - works a treat, I do have a face to face consultation with the Homeopath about every six months with my daughter there.
The word is "management". This is a two way process. Much tends to be one way. The health practitioner provides treatment. The patient expects treatment. It often does not occur to the patient that they have to do work as well.
I have had my ear bent by professionals who insist that patients are not interested in being helped to manage their condition and just want a magic pill which cures their condition.
I have met many patients who consider that it is not their problem its the health pratitioner's problem. Trying to tell a patient that they need to examine their own lifestyles and to look at what they do which can increase their discomfort and what they can do which could decrease their discomfort gets comments that the health practitioner is incompetent.
The 90% who give health practitioner's a hard time for trying to get their patient's to more responsible for their conditioner makes it very much harder for the 10% who realise that management of a condition is a patient's responsibility as well.
Manageing my chronic pain condition requires work and it requires listening to both my body and mind. Many people I have spoken to do not want to do the work that this entails.
I pay for some of my medical treatment. I cannot see the NHS being able to fund all the needed treatments that a chronic pain sufferor needs. Many patients who could help themselves by paying for much needed treatment would rather spend the money on beer and insist that the treatment needed is funded by cash strapped NHS.
AH! John Smith, your not a plant by any chance ? you don't work for those at the bilious end of the spectrum, you know the types who have no empathy whatsoever and see those with pain as just time wasters or Benefits cheats and all we need is some aspirin and a good kick up the backside, beer drinkers indeed ! Jeeze you must be having a bilious day indeed.
But living is expensive and a lot of patients know full well that the NHS is always strapped for cash and those crippled with pain know just how terrible it can be for the Doctors , but the little things cost very little like a sympathetic ear and a few words of empathy cost nothing as it can act like a placebo, and make a patient think more clearly and most leave the surgery with nothing but a repeat prescription but take more from the kindness received than the bilious know it all who thinks we all spend our money on beer
I don't want to get into an argument here. I just happen to have spoken to a lot of people about the issues both medical practitioner and patient. I have given evidence to the kings fund, NHS, CQC and others about my personnel experience.
I have met people who have a long term health disability and do nothing for themselves. I have met others who worked quite hard at finding out about there health disability and sought ways to lessen it. I have met many people with long term health problems who spend their money on beer, whiskey and cigarettes and have no interest in any treatment that may help them and they have to pay for.
As I am ESA because of long term chronic pain so I let you figure out what category I fall in. I am also on DLA.
Sorry Johnsmith, only now read your reply, and it's me that should apologise for I was having a hard time that day and let rip, and I know you mean well and give good advice, advice I myself read with great care as you take the time to offer it in reply to people in great suffering and I should not have been so rude I'm sorry
I cannot fault my GP practice but have mixed experiences from outreach physios.......but have had some pretty awful hospital experiences....but we were asked for our comments about primary care.
In response to the above comment I currently pay to have a weekly session of acupuncture but cannot afford any other treatments that might help. I neither drink nor smoke nor go out very often .....its simply that my income is not conducive to pursuing other treatments....and I am sure I am not alone in this
I was ok with primary care until 2008, I seen a Orthopedic Surgeon about the damage to L4/5 on my lumber disc, he was 100% going to operate, went back 2 days later, to be told, by a differnet doc, not a surgeon that it would be done....now, look at me today, am on crutches, have a stair lift, have a carer...need I go on....
I blame what happened then for the way I am today....
Too me, it should of been my choice of having the op, after all, it's my body...
Sorry, spelling mistake....would should be wouldn't operate.....
Hello
What many patients do not realize is that the relationship between patient, doctor and Hospital is a three way partnership. Today with many expensive treatments the hospital doctor has to discuss the patients complaint in front of a board of health professionals.
Nice guidelines have to be incorporated in these decisions, so sometimes the patient may be advised to take part in final clinical trails to get a beneficial treatment. The problem arises when the medication becomes on the open market, and the drug is withdrawn on cost by NICE. So the patient losses out of a continuance of the medicine and returns to a older less effective treatment.
On occasions even operations are not undertaken if the quality of life is does not match the cost of the operation, at the moment I have readings of this to do when my condition allows
So many things may not be seen or understood by the patient, this will and does lead to strains in this three way partnership, that becomes strained as GPs can be out of the loop,
Remember most practices are run as a buisiness now
it took them 14 months before i got my first appointment with pain clinic steroid injections didn't work sent to physio a number of times for assessment the last two times they took one look and said i needed an operation was sent to see consultant re back never saw him could only see senior physio in clinic who said my back was'nt too bad sent back to pain clinic again by this time 2 discs had gone this has been going on for the past 30 years on and off, have now been sent to the pain management service who are a total waste of time.
my gp cant do any more it just seems the older you are the more you get ignored unless it is an emergency. they seem to think you should just sit at home and not have a life.
Dear Helen, Having read your piece I just thought I would add something for you to think about, you said you had steriod injections when was this at the begining of your problems and how was the pain after these injections. The reason i ask is that these so called theraputic injections inand around the spine can cause a whole host of problems as the injections themselves are potentially posion to the nervous system and can cause clumping of the nerves inside the spinal canal and outside these injections are no licenced for use around or in the spine. If you consultants can see this may have occured, They Won't Tell You !!! they will just refuse to operate because they know its all to late anyway.
Unfortuately there is no cure for the damage these injections do, so look up adhesive arachnoiditis and have a read of Dr Sarah Smiths report symptoms and once the damage is done !! These consultant and now even less qualified people are doing these preceedures now .
My GP said they've given me all the pain killers they can, and since none worked there's nothing else they can do! But then another GP said to go back after I've seen other profs if I need more help!
Just found out from the site that there is a meeting at the Scottish Parliament on Wednesday29th May at 17 30pm about Chronic Pain. How do I get my self invited to this. I want to go Thank you Moggiemay
Hi Moggiemay, did you manage to get to parliament, I live too far away, but I would have loved to have listened to the discussion. Lets hope something comes out of it. I do hope they had at least a coup,e of patients there who had the opportunity to talk about chronic pain and the effects it has on people's lives, but it's not taken seriously enough, patients like myself are kept waiting for months to be seen by pain consultants, yet if I had a broken arm or even an ingrown toenail I would be seen much much quicker. It's unfair.
It's been 18 years since an RTA left me with an injury that resulted in surgery/physio and chronic pain. There's not a coping strategy I have not tried, medication- physio- exercise- pain management ( facet joint injections and RF treatment) - cbt- and a few 'alternative' therapies such as acupuncture- hypnosis-mindfullness. Whilst the NHS have been supportive from the surgical and pain management prospective I have found only one who has any inclination of the effects of chronic pain on the sufferer, thankfully, I still work with this cbt/schema therapist and acknowledge this intervention being the sole reason for my continued existence. If you are fortunate to have a GP who has any understanding of chronic pain, stick with them as mine has NO idea whatsoever. This situation has not been helped by the state dictate of reducing patients reliance on 'heavy' medication in order to decatogarise them in relation to welfare qualification such as Esa and their Wca tests. What a shameful way to treat the disabled is all I can say. Akin to many others I continually try various medications in an attempt to find the secret panacea - for me it has remained illusive, I hope you find yours!
I have only recently discovered this website and now seen your post of two years ago.
I do hope things have improved for you since you wrote this post about your road traffic accident/ surgery and the subsequent awful problems. I have to agree with regard to some GPs, before I was able to register with the surgery I have been with for the last twelve years, I had two previous surgeries who failed to give appropriate treatment and caused other problems as well, with the result that one caused us to lose our home unneccessarily, and the second wrote to the local council where having lost the house, we were applying to as homeless, to say, that I had no orthopaedic problems at all, (completely untrue), so that I had to search through my paperwork to find a letter from my former Orthopaedic Consultant Surgeon, which confirmed that I had and obviously still have, Spondylolisthesis - L4/5, S1, in my spine, which is degenerative and very painful and the letter went on to say that he would appreciate it therefore if any and all help was given to aid me with regard to benefits, access to work, housing and adaptations.
When I tried to complain to the surgery with regard to the GP misleading the local council, they did not want to know. The council housed us in a small one bedroom flat, which we are grateful for, but the house that the first GP caused me to lose, was a 3 bedroom one, nothing posh, just a post-war, former council house with 120' of garden and a conservatory, (a secondhand one I bought from a much posher house!) both of which were a huge help in relaxing me when the pain is bad. The last two Springs we were there, a pair of Robins nested in the roof beams of the conservatory and we were able to sit with a mug of tea or glass of wine and watch them. The parent birds would come down and take mealworms from my hand.
We are lucky, that unlike most council flats, the block where we have been housed has a large fenced communal rear garden and the residents here, over a fifty year period, since the block was built, have tended the garden without council help. One gentleman, now, 77 years of age, who was the first tenant here, has over the years, planted a large number of native trees of different varieties, so the wildlife they attract is amazing and nearly makes up for the home I worked so hard to keep from 1990-2002, mostly single-handed, until I met my husband and then married him in 1999. I brought with me, some of my dwarf fruit trees, so I have some "home" with me.
I am fortunate now, that I have very caring GPs, nurses and support staff, however they are sometimes, prevented from caring for me as they would like to and I need because the local Clinical Commissioning Group, (CCG), do not fund, or as in the case of my other disability, Lymphoedema, do not even recognise, the recommended treatment for it. (I have posted quite a lot about this on the Lymphoedema part of this website). I am campaigning hard for this and other issues to be recognised on this site and on Facebook.
I found the pain clinic unhelpful, except for the TENS machine that they gave me. The injections in my spine made things much worse and I would never have that done again. A friend of mine, with MS, swears by them so I guess, what suits one, does not suit all.
I had better get off my soap box. Hopefully you will receive this, though as there is a two year gap you may no longer be on this site.
I dare not start on what the current government, has done to disabled people, or I will not get anything else done today.
I cannot fault the care I receive from my GP. We discuss medication and, apart from the fact that the now-defunct PCT refused to prescribe pregabalin, preferring the cheaper gabapentin, all has gone very well. She has referred me three times to the Chronic Pain Unit. At the first of each session we have reviewed medication, but no major changes, then I have had a second appointment each time - once for steroid injections and twice for radio-frequency denervation of facet joints - very effective. The one thing which seems stupid is that CPU are not allowed to make follow-up appointments afterwards, but expect the GP to refer us again if necessary! Otherwise - an excellent service in West Kent!
I feel I must stick up for some of the decent people working tirelessly in the pain management field, and if you live with pain all the time you must know how bloody infuriating it can be, because you know that in the end it is you that knows because there is only a certain amount that can be done, and after a while it is down to you the patient to learn to live through experience of what brings it on worse , or balancing out, if you need to do something, then' it means using the pills and just do thing's slower and plan out more how to get around and most of us that can still move learn through bloody-mindedness of not giving in completely, and how some days are crippling and others aren't as bad.
But the largest bug-bear for us all, I think' is being believed , being trusted that your condition is as you say it is, and stop bad mouthing people that live with chronic pain and are living daily with it.
As an example of what I mean ,is I've myself becoming worried about what people are thinking then doing something stupid just so that I'm reassured that there is no psychosomatic-ness involved, and that comes with the looks of disbelief from people ' and from people that should know better, for there is a tendency iif there is no visual signals , then your not living with chronic pain , and yes the Health professionals can be the worst nudge-nudge-ers , because one thing they hate is someone keep coming back saying the pain is still there and that makes them feel a bit hopeless, but let me tell them' that as long as you empathise and except the patient is telling you the truth then that is almost enough alongside the prescription .
If any of you have RSD/CRPS then please help with this
My MP is going to ask parliament to debate our situation/condition, on his own he is unlikely to succeed so if you want the government/health dept to do something to prevent others going though what you have please e-mail your MP today.
Tell them the name of this condition. That it is the worlds most painful incurable one and as much of your story as you are comfortable with, at the very least tell them how long and how many doctors before you were diagnosed. That 95% of the NHS have never heard of this condition but according to figures in a paper published by the Royal College of Physicians last May there maybe 480,000 sufferers on the UK and less than 20,000 have been diagnosed That is approx 760 undiagnosed for every MP.
Ask them to read these links and spare 5 mins to watch the video.
Tell them that Iain Stewart is going to call for a debate on this and ask, beg , plead whatever you feel is appropriate that they contact him ASAP to offer their support in anyway they can.
Please don’t think I’ll do it later do it right now.
I have been in chronic pain since March 2009, I had a double cervical spine disc replacement at C4/5 5/6 in Sept 2010 which improved the mobility in my neck ( I could hardly move it before) but still the chronic pain remains in my neck , right shoulder down into my scapula and sometimes in my leg. The pain is classed as neuropathic and muscle spasams. As we all know the pain tears your life apart, I could write an essay on that but I won't. My G.P. has been fantastic so empathic , he calls me a 'genuine case' which really helps me because I know he believes me. My experience of NHS physios in the early days was awful, no time to see you , no real interest, I used to cry when I came out, they were rude really. I paid to go privately and it was a different more positive outcome.
My surgeon was there to do a job , he did warn me it might not cure the pain it didn't but at least the mobility was there, job done, discharge to the pain management team. The access to the PMT was slow and was spread over a year.The physio at the PM was super, she really wanted to know me and work with me, she taught me exercises which I will do for life, her sessions were at least 30 minutes long. The PMT gave me accupunture sessions which helped a bit , the nurse was supportive and caring. My CBT counsellor was patronising and didn't help. Yesterday I had an appointment with the PM consultant which has left me confused , I mentioned that I would like to try and stop taking tramadol and he said ' You have to be strong, don't give in to the pain and distract yourself', obviously he hasn't a clue I have been strong for the last 4 years , I don't want to be in pain if I could cope with the pain I would. This seemed so contrary to the advice I had been given at the PMT , accept the pain and manage it. I asked about the anti-biotics treatment in the news at the moment, he said I had the wrong symptoms. I felt so deflated, confused and guilty he made me think I was weak giving into this pain.
I've been in chronic pain with vascular ulcers for three years now ,and my experience with GP has been such a let down ,I've came home crying so many times ,why should l have to practically beg for the pain meds that l know gives me a near normal quality of life ,with a pain level l can manage,but just as I've worked out that a 35mg patch works for me ,GP
Decides lve been on them too long so lowered the dose even though at same time looked at my leg said yes ulcer infected,
When my ulcer is infected the pain is very high he should and does know this..
The last three visits lve wanted to tell him how bad m feeling inside and have been very down since December ..ll can't get the words out ,l want to tell him how disapointed l feel when l leave his office ..l
I sit in the waiting room and go through in my head lm going to ask him for help ask him for the meds that let me get through each day with a tolerable leval of pain.
But l get in there and l can't ....why !!
Ie not been to the nurse to get my ulcer cleaned or to the GP because the vascular ulcer still
Infected and lm in so much pain ,because l just give up what's the point,l know I'm the one who will suffer in pain but ...I'm so tired so disheartened ,l thought he would listen to me
I had a serious car accident in 2004. I was parked on a country lane waiting to turn right and another vehicle came around the nearby corner (doing 70 according to the police) and hit my stationary vehicle at about 60 and pushed my Jeep thirty five feet along the road, just to give some perspective. I was so busy looking after the other driver that I failed to notice my own pain until the police and ambulance service arrived. Was treated in hospital for knee and neck pain. The consultant from the insurance company produced a report to say that my injuries (Back, neck and knees) would clear within a year. (I settled on that basis) Interestingly, I have recently found a letter on my medical file from a knee specialist sent at the time to my GP, which absolutely disagrees with this conclusion. If I knew that then, the outcome would be very different at least from a treatment and financial point of view.
Following the accident, my health deteriorated. It started with severe pains in my calves, which were so bad that I could not even walk up the slightest incline. Was checked for intermittent claudication and some neurological cause, but inconclusive. Knee pain started to be worse than the calf pain, which now seem restricted to severe calf cramps. My back also started to be extremely sore and restrictive. Was prescribed various drugs including tramadol and as the pain increased, so did the level and choices of medications. By 2007, the pain was now pretty much constant, but not chronic. In 2008, I had a laminectomy on my back and during the surgery, they discovered that a previous spinal fusion was completely mobile and ineffective, which necessitated another spinal fusion. In 2011, I had another accident, involving black ice on my driveway, which caused me to slip under the car. On this occasion, I was eventually diagnosed with a Weber C fracture of my right ankle, which was in essence, four fractures and two dislocations. Required four different operations because they failed to notice the second dislocation and one of the fractures.
My mobility was becoming ever more restricted and painful. The injury to my neck (C3) was inoperable; my ankle was virtually continuously swollen and painful; both knees were increasingly painful. By 2012, I was becoming increasingly disillusioned with my GP, because he was not listening to my problems and prescribing medications that interacted badly with one another. This came to a head over my knees. Both knees were really painful, but the right knee was worse. I asked to have scans of my knees after x-rays had shown both knees to be damaged. He refused to scan both knees. Only the left knee, which had been worse after the accident, but better than the right knee ever since. His reasoning was that he couldn't afford to pay the extra £360 for the second scan! I was furious at this and on my visit to the consultant who was looking after my ankle, asked him to look at my knee xrays. He did so and agreed that both looked bad, but said that my GP had to make the decision not him. I then had a furious exchange with my GP, who accused me of being manipulative, because I had gone to a surgeon behind his back. I explained that I had done so because I disagreed with what he was doing and because from talking to the hospital, they were incredulous that my GP had refused to scan my second knee,especially as this one was far worse (in my view) than the right knee. During the row, I threatened to report the GP for his behaviour and got up to leave his surgery. He then changed. Told me that I could either have my knees dealt with privately (only a ten day wait for an appointment) or have them done by the NHS which had a four to five month waiting list. He said the private treatment would not cost anything. (Some deal between the PCC and the private hospital). Easy decision. After seeing consultant and examination, I was told that both knees would need replacing.
Eventually in February 2013, I had a full replacement of my left knee and the same on my right knee three months later. In both cases, the knees were found to have acute grade 4 cartilage damage, which is the worse categorisation of knee cartilage injury. The consultant said that they were the worse cases of cartilage damage that he had seen in a long while. Surprise surprise, my right knee was far worse. No cartilage at all, so I had been dealing with bone on bone pain for potentially years!
The problems however did not stop there. My consultant did not want me to be taking morphine before the operation, so I reduced my intake from 120 mg to 60 mg before the first operation. For the second I had reduced to 30mgs, but I was struggling with the pain. After second surgery, after two days, my morphine intake was stopped and within hours I was in agony. At one point in the night, the doctor told me that I could not have any more medication for five hours, when I was in absolute agony. I was attacking my right knee with a pillow and threatening to fling myself onto the floor onto my knees, knowing that they would then have to knock me out. Eventually they did. Once I had recovered from the operation, I was discharged from hospital, although the pain relief was not under control by any measure. Within 48 hours of leaving the private hospital, I was admitted to an NHS hospital by ambulance because of acute knee pain and massive swellings to my knee and ankle. I spent 6 days at the NHS hospital, having just spent 6 days at the private hospital. The Pain Management Team at the NHS hospital conceded that I should not have been taken off the morphine as I had been (especially as I had been on morphine for 5 years) and my GP has arranged for an appointment at an Acute Pain Clinic for early August.
I am pretty disillusioned with the medical care I have received. If the diagnosis of my knee damage had been properly identified in 2004, treatment could have been started sooner. If someone had told me about a letter which contradicted the medical opinion over the accident, I could have taken early action. If my GP had listened to my problems, instead of speaking down to me and making judgements that were wholly incomprehensible, better decisions could have been made. If my surgeon had not taken me off morphine so suddenly, the massive withdrawal attack in hospital and a further six day stay in another hospital may have been avoided.
I have only recently found the Unhealth unlocked website initally for the Lymphoedema section and now this section and your post which was apparently written a year ago. You have had a terrible time.
You state that "I have recently found a letter on my medical file from a knee specialist sent at the time to my GP, which absolutely disagrees with this conclusion. If I knew that then, the outcome would be very different at least from a treatment and financial point of view." If you have not yet sought legal advice, it is important to consider doing this, as there is a 3 year time limit which begins either at the time of injury or at the time when you became aware that you had suffered an injury. From what you have said, it might be considered that you first became aware, when you saw the letter from the knee specialist. I am not a solicitor, but have some knowledge of this area.
If you like you could email me on calypso1975@hotmail.com
I realise that since you posted this your situation may have changed, I hope for the better.
regards
Susan
Cannot but agree with a lot of previous comments. I have found some GPs to be less than sympathetic.. most seem to think either you are making symptoms up or fall back on I see you have had depression in the past. Side effects of meds prescribed by hospital were never taken seriously, not discussed but was given something else to try which in the end lead me to not knowing what I was doing. Given the impression its all in my head, which doesnt help at all when you are trying to control pain. Cannot fault hospital pain clinic for advice, but seemed to take a step forward and two back, found there can be a lack of follow up, A year down the line I feel as if I am finally getting somewhere..but still a way to go. I feel sometimes as if you are left to chase up appointments and results yourself which is so difficult when you dont feel so good. When I read about others lack of access to pain management I feel lucky. Some physios aren't very interested in what you are trying to communicate to them. I have EDS/HMS and fibromyalgia and OA in hands, previous cervical problem which left nerve damage in arms. While trying to get someone.. anyone to tell me why I have so much pain of various kinds.. means I dont get bored with just one sort I suppose...everything has spiralled out of control on occasion. This led to a period of severe depression over the past winter as I couldn't face any more doctors GPs in particular saying more or less... you are focusing on the wrong thing.. have an anti depressant or the best comment.. I see people worse than you. I am aware there are many people worse than me, but does that have any relevance when I wanted advice or to know how to manage pain. Consultant pain doc said there is no magic pill, I can accept that, but there are ways and means to manage pain to a level that I can cope with and get on with my life.
I was refer to specialist in one of the hospital after my MRI result query pressure at my spine.
I was refer to another specialist in a different hospital to check for myeloma, thank God the result came negative, all others results shows osthrpross arthritis. He sent me back for he to carry out more investigations. Because they were sure what it is, One of the registrar suggested an open surgery which l declain, he was punching but the consultant told him no. They all agree to do biopsy, almost a month there is no radiologist to carry on this test, every clinic in the hospital contact they told them they have no one in te clinic to do it. One of the consultant advise me to write a petition, but ltold him no. At moment lam in pain only control it with co_codamoland ibuphine. Is only today they decided to put me on morphine 2.5 ml
To betaken every 2 hrs or when l need it.
Please can tell me how effective this medication is and is it really for pain, my upper back is very painful. And if there is anywhere l can get all this test done with out me being treated like a object by Nhs doctors.
Hi I have had mixed experiences, some very good, some very bad and everything in between but still no diagnosis and palmed off with more and more pills.
Changed GP within same surgery, just kept waiting until a decent GP was available but she only work part time so very hard to get.
Have had limited physio, told nothing they can do for me as I know exercises, just have to live with it/get on with it and signed off this service a few times. Best thing I got was accupuncture helps distract and defo. improves my sleep.
Been referred to pain clinic, helpful and sent for mindfulness/meditation after years of meds only but they centralised service and no appointments or follow ups due to funding.
Possibly best thing was being put in touch with Pain Association Scotland who give monthly talks on various aspects of pain, e.g. flare ups, dealing with others, stress.
GP's seem hell-bent on giving more pain killers due to permanent nerve damage but no investigations.
Had spinal injections at A & E which helped when I couldn't walk at all during a flare up but have been refuses them since? No explanation why not?
Asked for further tests - told nothing sinister to worry about therefore not necessary - without tests how do these 'mind-reading' doctors know this?
Had to go private for MRI scan - inconclusive, mentioned wear and tear on discs and possible bulge which had possibly recovered due to my physio exercises? When in expecting them to find 'something' AND FIX IT. Wishfull and niave but as upset did not understand if there was any next step for me. Consultant left me 'none the wiser'.
Asking for tests again a few years down the line and being referred back to physio for accupuncture and OT assessment of home. Feel this is cheaper than tests but hope it may give practical ideas.
In general GP still not listening to me I want to reduce meds. they keep increasing them. I want tests, referrals, explanations, they give more meds.
Feel I have had quite a lot of help compared to others but still left in desperate pain with nowhere to go. NHS tries but does not follow through.
Hope this gives some insight into the service I have been given.
Need some tips on getting the NHS system to work for me as I have fallen through the cracks.
I have a long history of back pain. Left with chronic back pain daily sciatica, permanent nerve damange (although no test carried out to confirm this), very limited walking ability off work for a few months now on hugh variety of meds including fentanyl patch and oxynorm tablets.
I have no real diagnosis as MRI (which I had to pay for privately a few years ago) was inconclusive. I had to go part time last year and am worried I may lose my job as have had all the adjustments occupational health have suggested and part time was my last chance. Can't bend down to even get milk out of fridge so it may be a while before I can return. My work involves a fair bit of movement but I'm not stuck at a desk so I can move about to suit myself quite a lot, albeit often changing position. I still need to do a lot of walking once a week so I need to be quite fit before I return.
Sorry this is so long - basically I had spinal injections once before the they really helped but have been refused them since, had accupuncture which helps a lot, particularly for sleep, had physio which helped but pain nurse advised not ready for this should try accupuncture to reduce pain first as she knows this works for me, told no longer available on NHS, asked to see consultant attached to pain clinic but no appointments available as I AM HAVING A TEXT BOOK FLARE UP, even though the pain had me almost suicidal over the last few weeks, palmed off with pain nurse to be my contact and explain things but can't get her on phone! Going round in circles and feel the system has washed its hands with me.
I feel I need full tests and updated diagnosis and help to sort out my meds properly as over time they have just kept increasing as my body gets used to each combination. Why does nobody listen and provide a decent service? Help, suggestions please, sorry for the moan.
It seems the GPs just don't know how to help patients in pain. Also they have trouble diagnosing if the patient has something a bit unusual. I think the ten minute appointment times hinder proper diagnosis and support. I have found that newly qualified GPs are the best to talk to as they haven't yet learnt how to run ten minute non personalised appointments. They are lovely to speak to, and want to help and suggest new things. However they are always running very late because they give everyone longer than ten minutes!
I have hypermobility syndrome, and my diagnosis letter was lost for 17 years so no one knew that's what it was, and I've been told that the problems with my hands and feet can't possibly be connected, that everyone gets pains when they get older etc. I think these comments have been because GPs are trained to look for the obvious.
New ideas like personal health budgets and patients taking control, or expert patients, are difficult for GPs to get their heads round, as they are trained in the medical model of care. The 'house of care' model goes a long way to support a different way of thinking.
A pain mgmt. Clinic gave me a coccyx block for vulvodynia. The neurologist said if it didn't help it couldn't make it worse and the procedure was uncomfortable. Well, it was excruciating, and my pain was worse afterwards for over a month. Later my urologist said I should not have had that procedure for my condition. The clinic made a mistake. I never went back there. Also not one doctor out of twenty asked me if I was depressed from the pain and I was extremely. I was helped by nortriptyline for both the pain and depression luckily. None of the specialists treating me contacted each other about my case or recommended therapy. I sought help on my own through the national vulvodynia ass.
Pain management! That's a joke! I was told at my pain clinic that I needed an injection every 6 months. When I phoned in. Feb to inquire, I was told that I should have been seen in November 2013but some people who were due to be seen in July 2013 still had not been seen. My Gp sent a letter and I subsequently got an appointment for early April. My biggest gripe is that the doctor at the pain clinic reviews my meds and makes changes according to how I am responding, but my GP does not necessarily concur, (probably due to financial constraints)eg I was prescribed lidocaine patches but my GP discontinued them as he said I did not fall into the category of patient allowed to receive them. In addition to lumbar pain(I have had 3discs fused and decompression, rods etc, I suffer from Fibromyalgia so I have pain all over my body. The pain clinic prescribed Duloxetine and Amytryptiline but my GP regularly stops the script on the grounds that I have been on them too long (he assumes it is for depression)and I have to re-justify my need for them. Despite my having a chronic pain problem, I am seldom issued with a reasonable supply of tablets which means I have to make the journey to the chemist almost every week to collect more of a particular med. the medical profession need to work more closely together to make pain management a system where the patient benefits. Enduring pain is hard enough, but having to almost fight for the proper medication to control it makes it even more stressful! At the minute, GPs seem to be working in isolation from the other areas, at least in my experience.
Just seen your post and so agree! Pain clinic says one thing, Dr another. Dr gives anti sickness tabs to counteract side effects and pain clinic says I shouldn't be having them. Rheumatologist gives me drug to help with sleep problem, but pain specialist nurse says they won't do me any good! I get appmt with pain nurse but she goes off sick - not her fault but there is no Plan B. I have small fibre neuropathy and fibromyalgia and as you say, it's bad enough being in constant pain without the medics left and right hands not working. Grrrrr rant over!
I think in the very first appointment it is so important that the professional listens , for from experience I was doing as much to try and read the face of the physio or GP that they were listening and believing and it goes so far in relaxing the patient enough to allow them to talk properly and think clearly so that they get the most important symptoms over to the doctor, and believe me it matters so much that the effect of a kind face listening can do so much , because I was fed up with not being taken seriously and patronized by the face that is supposed to be listening and nodding in the right places but you know their mind is somewhere else or they are looking and writing and filling out something and you forget important thing's by trying to get their true attention as you know time is tight and most people do not want to waste their doctors time but it's important that you can trust your GP or physio or nurse or any health professional for I always trusted them...to my cost.
Not being able to trust comes from body language initially , I trusted my GP by her kindness and her touch as the way she did it showed she cared and was listening, whether she believed me or not I do not know, but I trusted her and that was enough for me, and it is the little human touches that matter most, well at least to me so that I could get over to her my problem and illness symptoms
I can't fault the Female GP in my practice as she was the one who recommended I go to a particular pain clinic where the Dr specialises in fibromyalgia. She has always listened to my concerns and then done something positive, referrals to Physio, consultants, X-ray, hydrotherapy etc. the male doctors in the practice are not so quick to act and one in particular I would not choose to see unless I was in a real emergency! Shortly after starting work in the practice, he stopped my pain meds and prescribed paracetamol on its own without even knowing my history. This has happened so many times with him and it frustrates me having to justify the need for tablets strong enough to control my pain. I would gladly prefer not to have to take them!
When I was first diagnosed with fibromyalgia and was struggling to cope with the physical limitations, lack of mobility,isolation and pain, the female GP referred me to a therapist within the practice to have cognitive behaviour therapy. I had never considered this before but it was the start of a long journey out of depression and I am so thankful for it. Unfortunately it was terminated , as so many things are, due to lack of funding.
Over the years, I have been referred for Physio many times but have always had to wait weeks for an appointment. The problem then is worse than it was in the beginning and other complications have set in which the Physio cannot treat as it is only the original one stated in the referral which may be addressed. In recent years, I have paid for Physio and acupuncture myself as a means of pain control. It is a pricy option and I can understand that it may not be an option for some people because of the expense.
As far as surgeons are concerned, I think the NHS has come a long way from the ones I used to see in orthopaedics. Way back when my low back pain was first investigated ( I was in late 20s) the surgeon came round with a bevy of students and announced to all that there was nothing they could do with my back pain and then walked on to the next patient, leaving me devastated and in floods of tears. If it hadn't been for a sympathetic ward sister and a determined head of Physio, I dread to think what my mental state would have been.
The most recent surgeon I saw about my back couldn't have been nicer. He laid all the facts before me, told me the risks, the possible outcomes and had plenty of time to listen to my concerns. It was up to me to decide once I was given the full information. Any time it have seen him since my operation, he has been thorough and very helpful. I prefer to take responsibility for my own health as far as possible and research online about any of the issues I am troubled with as far as treatments etc are concerned.
I went to an emergency room in pain with vulvodynia and no one heard of it so they gave me a shot of diloudid without talking to me or examining me and they shot made me throw up and poop myself in bed for a week. My gyn that delivered my children, at the beginning of my journey with vulvodynia, ran a lot of tests and when they were clear he told me to see a psychiatrist. He thought I was crazy. I had to educate myself and even experiment with therapies and medication combos myself to control the pain.
Without my GP and my Physiotherapist I doubt I would be moving; Their determination to help, support and treat me has been faultless. They have pushed for examinations, tests and treatments; and when I haven't had success with a treatment my GP especially goes what now? (I've sat in her surgery whilst she has phoned pain clinic and asked what can we do next?) Although I am still in pain and struggling, It makes it a bit easier knowing I have them in my corner fighting with me!!
Ever since being diagnosed with DDD I have found from pain management to doctors to ESA very slow often I have to borrow money why I wait for a payment.Confusional forms,ATOS are a nightmare.Even the local chemist have trouble with my prescription.
To be fair my GP has been there for me. Ok, it was a tuff road and he made me suffer is horrible pain before he put me on OxyContin. We tried the patches and everything else. It took me, to take a pain scale chart I to his office and pint to the area just under car crash pain for him to understand.
He said this was useful. From then, he has given me the pain relief that I need. The pain is worse right now and I value what he did for me.
For anyone that thinks it's easy to get OxyContin, think again.
Pain relief any kind from A and E was impossible. Before I got to this level of pain, it starting budding. I went there twice in tears, in the middle of the night, spent money on a cab to get there and they treated me like I was trash. They said you need to see a pain team. Why do they not even give gas to people in that state? I can undertsatnd them being funny with pills. But no pain relief at all? It was one of the worst things I have had to be part of and I thought about killing myself soon after leaving. Alone, crying.
I have had physio who were brilliant but unfortunate were limited to what they could do to help as pain didn't ease up I have had course of hydrotherapy which is good option for low impact exercise that is not weight bearing but only limited service available for this tbh pain management were awful for me didn't want to know what was saying just to give out more meds n say goodbye but am waiting to see a different place for the service to see if they are any better. I have had plenty of gp contact but again in a ten min slot when an appointment is available its medication and out door mainly.
Overall I don't think there are many professional that have the first idea of the chronic pain and impact and don't have the time to concern themselves with a person its just fast in n out door and see next one. I believe so much needs to be changed and more support offered but as much as I appreciate having NHS they are stretched beyond capacity...what more can they do with little they have unfortunately it means so many suffering for long amount of time in chronic agony before anything real beyond medication is done its quite sad really that you have to fight all the way to get heard and seen when it should all be in place already.
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Pain meds
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