What changes do you want to see regarding Pai... - Pain Concern
What changes do you want to see regarding Pain management by the NHS?
tried so many different types of medications would be great to get it right first or second time round,
Dearest superannie i'm in full agreement with you reference getting the best medication w/o although it would be nice to win the kottery too! I think the odds are roughly the same?.
I do appreciate that everyone is different etc etc, but nice thought!
Primary care GPs don't understand pain.
Hi Incartek you are so right.A GP with some understanding of pain and its effects on everyday life may have saved me a lot of stress, anxiety,depression and badly prescribed medication.
would like to have ticked "all of the above" lots need to improve.
sandra.
sandra, I would actually draw a box and tick it for "all of the above" if possible! 😇
It's interesting that so many people have voted for better drugs. It would be fantastic to find something that sorts the problem out for the majority just by taking a pill - preferably without horrible side effects. But I wonder if that's still beyond medical science, because chronic pain is so complicated.
It would also be good if GPs had a better understanding of chronic pain. But the people who have really sorted mine out are at the pain management centre (ie tertiary service). More people should be able to get access to this kind of service throughout the country. The clinic is always full when I go. I have had difficulty in the past getting follow up appointments because they were so over-stretched.
A really excellent specialist pain centre - which could be based in the local community - should, if properly funded, be able to provide advice and monitoring of a range of medications, alternative treatments, and emotional and practical support for patients in managing their pain better themselves.
(There, said it, will get off soapbox now)
I wish I had such a postive experience of a pain management centre. Took me ages to get referred and after lidocaine IV (I had tried everything else - amitriptyline, gabapention, pregabalin, cymbalta etc) as well as acupuncture and other alternative therapies (coping programmes, "expert" patient etc) I got told that was that - nothing else that could be done. Good luck and don't let the door hit your ass on the way out.
I've had a similar experience. I was asked what more I wanted them to do, there was nothing that was going to 'cure' my pain and I just have to find ways to live with it! I don't want to be taking pain killers for the rest of my life, but what else can I do when I'm not getting any other kind of support from the NHS.
should be a waiver you can sign so you can be prescribed an adequate dosage to help our pain!!!
I totally agree, being given something I could have bought at the chemist (and have probably already tried) is of no help whatsoever. If they did more proactively to begin with, it would save time and money in the process by not needing so many prescriptions for drugs that don't help us and also reduce the number of medical appointments needed to get the right treatment. We should form a group & campaign for change !
hi tea drinker I totally agree with u I have had bad nerve pain for years now .. just sort of getting to end of my umm not sure what u would call the way I feel. I have respect for one femail doctor she really tried to help me. but I had to change health centres. not much more I can say. no doctor I've seen since cares sorry.
Regards. gerryevo58
Really good ideas. Your comment made me think. A "miracle pill" if such a thing is possible would be good but I think sometimes the drug companies have far too much influence on what can be prescribed... I think it would be good if there could be more research which isn't pharmaceutical led to help to manage chronic pain without causing harmful side effects in the long term.
Improved pain centres
I have tried so many different medications and treatments! The meds work for a short while, and then I build up a tolerance to them and they don't work anymore, and the whole process of finding something else that works starts again. I've tried various types of physio and exercise therapy, all to no avail! The only thing that has given me some relief is reiki, but to have this privately is expensive and it's not available on the NHS.
not much point putting down about better drug releif, probably think thats what your after?? even though i maintain it really helps my pain a lot!!.Oh i`m not trying to be any of the comments below.. Thanks
I would like primary care to be better but I almost posted pain centres though I didn't feel my reasoning justified this. I have no experiance with pain centres / clinics or management programmes but I think that's what is my concern. I would liketo see information on pain centres to be more available to the public for example where can you find them, what can they help with and what is required to be referred to one and I suppose in my ideal world self-referral would be an option.
over time I have considered what may be a good proactive idea is to see a CPN or other professional that would review us that suffer chronic pain. The appointment would be regarding how we are getting on, our meds if in pain clinic and new ideas that have been discussed in the NHS regarding pain.over that period of time
We all get out of touch, and let things run and forget our differing techniques, over time. This appointment would refresh our memories, and get rid of bad habits that we have picked up over a period of time.
Possibly this may be able to be inserted into the chronic disability medical that we go through every so often at the GP surgery our medications could be discussed then and changes undertaken as new meds come along. A further appointment could be arranged with the pharmacist
Our mental health could be checked at the same time and this could help in the future before anything became too big to rectifly at a later date.
All this of course would cost money although how much would it save in future appoitments.
All the best
BOB
What a great idea Bob, I think the pain equivelent of a CPN or a pain specialist CPN to work as a kind of support worker would be fantastic. It feels very much to me that there are large gaps between different specialists and services. For example I have have a rheumy now to try and figure out what's wrong with me as a system (best way I can describe it) and I am currently seeing a private physio and am probably gonna have to go back to the knee specialist to help with knee issues. And I've just asked for a new referral back to mental health team which I aim to get them to look at pain management through nhs but I have a feeling the mental health referral has only been made due to past history. I would really love to have a key worker to try to correlate a care or mangement plan. In an ideal world I would have one doctor look over all my history and issues and work from there but it seems nhs care only deals with one problem at a time. SIlver shadow says this in the post below a bit better than me.
As usual Bob you seem to have hit the proverbial nail on this one. I wonder what we can do to get a sytem plan together and who we need to talk to to getr the ball rolling....
A lot of people have more than one ailment. Different specialist look at each one, but, they do not in any way consider the other ailments you have. One Doctor to look at the person as a whole, with all the ailments and how they interact in the body and mind and give an assessment of the person to each specialist to view and consider how each of them could put some 'package' together that would bring relief. Not asking for cure or total reduction of all pain, just understanding and consideration that could bring a general relief which would make life so much more bearable - this in turn would bring tolerance of what we live with easier and more manageable.
Bit rambley and disjointed, but hope you get my general gist, the brain is not co-operating with the fingers on the keyboard. Was about to add sorry, but will not, I should not feel the need to apologise for the pain or the way it affects me and how I express myself, how ever badly that is.
Cee
I could not agree more, nobody seems to look at the symptoms as a whole, the best help I have had is from the Pain Center who have really helped me – now even that has changed in the guise of patient choice, I have now been reassessed, sent to see three different doctors – now found myself back where I started at the Pain Center with funding for 6mths treatment, not sure what happens after this runs out.
Take care
Steve
The only people who seem to look at the whole person are those on the alternative medicine side so I voted for better access to those services. Yes I would prefer to find the perfect pill, one a day lol and perhaps that will happen sometime. I understand that my GP doesn't fully understand chronic pain. As I've said before, they feel they've failed if they can't improve on something and can become a bit defensive. If I know my symptoms require it, I ask to be referred on, not mess about in the shallows. Pain Clinic is best but let's be honest, if we've had all the pills, all the jabs, patches, tens units, physios and God forbid, surgeries, what IS there left? We can't have something that just isn't there. Except more of what is there. And hope! And self-manage with our favourite techniques.
Be persistant! I've had chronic pain for 10 years and over that time I have fought and pushed for good treatment. The last few years my pain has been under good control following pain management course and from sympathetic consultant: I take 6 painkillers and they work well together, plus annual spinal injections, pacing, massage, chiropractor and light exercise when I can manage it. There is no magic bullet because one's neurotransmitters are scrambled, producing the pain in a feedback loop. After 2 years these tend to be fixed. I find the worst thing is living with a highly sensitised central nervous system (wind up syndrome, see post below), emotionally as well because you cannot separate that from the sensitisation that pain causes (ref. Institute for Chronic Pain. Accepting my condition has taken a long time, but since I stopped fighting it my pain has gone down and I can enjoy more activities. Neurological support was crucial in helping me find my way, from a Cranio sacral therapist.
I was recently diagnosed with wind-up pain after suffering badly with 3 years of severe labour-type pains following treatment for stage 2b cervical cancer with chemotherapy, radiotherapy and brachytherapy. The Pain Clinic was useless. The consultant put me on methadone, which didn't control the pain and gave me a list of bad side effects including lymphoedema. The mismanagement of my pain treatment meant that I ended up using a wheelchair. Once the lymphoedema set in and joined the abdominal pain, I couldn't walk anywhere. The Pain specialist discharged me after a year saying there was nothing further they could do for me and I should continue taking the methadone. Rubbish!! I detoxed by myself from the methadone and took oxycodone instead, with OxyNorm for breakthrough pain. I asked my GP to arrange a second opinion and was referred to the hospital's Palliative Care Team. The consultant soon diagnosed wind-up pain and prescribed ketamine. This drug had a 50/50 chance of working. I'm delighted to say that, in 15 days, the wind-up pain was gone. When the Pain Clinic nurse discharged me, she said "We could give you ketamine but we don't think your pain is bad enough for that." I saw their consultant once only, for my first visit to the clinic. After that, my care was in the hands of pain specialist nurses. I don't consider that to be effective pain management. Thankfully, the Palliative Care Team consultant saw me every three weeks until he was satisfied with his diagnosis. Now that the ketamine has worked and I can stand upright again when walking, I am seeing him again in two months time. At last, after three years of hell, I'm receiving effective treatment.
Hello
Generally, the new system that is in the process of been rolled out is Doctors surgeries acting as a hub where they bring in specializations into the same building. So Nurse practicioners and possible consultants run cllinics in with GPs, this can speed up the treatments and assist in treatment short cutting hospital waits, prescriptions are issued on site, this speeds up treatments and various appointments can be undertaken on the same day causing less stress etc. Now they are going further back and incorporating community dentistry and other specialities on the same site, This can shorten patient travel etc
All the best
BOB
I found that acupuncture was a God send but unfortunately, at £30.00 a time I can'r afford it however, I know that in South Tyneside it is part of NHS treatment.
Hello Sandy
Thanks for reply
Some GP surgeries have a doctor who are trained in acupuncture, I understand that to pay private can be very expensive. See if your surgery can assist regarding this
All the best
BOB
I am under the pain team, ortho team, neurology team and gp but like a lot of people I find that they are treating the symptom rather then the whole problem.
It makes you feel very frustrated which can then lead on to relationship problem's with your family, I often receive copie's of letters they write to my gp and wonder if they have got my note's mixed p with someone else's as they don't resemble what has been discussed at the appointment.
Maybe each hospital / surgery should have a panel of patient's who suffer from chronic pain to help them spend fund's in this area, it might also do patient's good to speak to each other, be able to sound off and hear about things that they have tried and been of help?
Rant over...
The stress from untrained or poorly trained GPs going against hospital treatment plans is harming me and from what I read here GP ignorance harms many others. T he main issue is under medicating patients and failure to understand we have 5 pain receptors so we need a group of drug for each of them, and being left in pain makes it worse permanently. Better GPs I say? I can tell you of 5 who have broken General Medical Council good practice guidelines, just on me!
tried all sorts from pom s to natural things , including exercise ,the consultants need to listen more and understand that these are real people with real problems , and that holding surgery off because your too young is bad for the person in need and damaging to them both physically and mentally ,sole destroying
I would like more education to GP's and other healthcare professionals about chronic pain & the impact it has on not just the person with the pain but also the people around them. I don't know about other people, but in my experience (having had chronic pain for 13 years ) a lot of healthcare professionals don't understand the effects of long-term pain & seem unwilling to refer to other specialists or they don't seem to be able to gauge the severity of pain. Maybe this change could be brought about by having more multi-disciplinary meetings between healthcare professionals AND patients and their families to discuss what REAL patients have found helpful/unhelpful rather than assuming a person's needs from textbooks. What do other people think ?
I couldn't agree with you more. My 15 year-old daughter has been in severe pain in her lower back and leg for nearly a year. This has had a detrimental effect on her all-important GCSE year at school. She has missed so much school because she is in constant pain. Her MRI Scan, X-Rays, Ultrasound Scan and blood tests have come back as normal. Her pain is so bad that the physiotherapist can only do breathing techniques with her and she has stopped the sessions she was having in the hydro pool because she was in even more pain for 2-3 days after! She's had numerous pain killers that don't work and now we are waiting to see a Pain Managment Consultant. All this has been a terrible strain on my daughter, who was very sporty before this problem. She feels very down, tearful, tired though lack of sleep and needless to she suffers with mood swings. Her Dad and I feel so helpless and feel like we are constantly walking into brick walls with the medical profession. It would be helpful to discuss these problems with people in a similar situation.
went to a gp today 10/2/14 first time seen him told him my history etc etc came out feeling all you want to is feed me more drugs and what he said before i left "i can't help you " great thanks for that i suffer in pain then
Well someone else can. Demand a second opinion at a pain clinic, you are entitled to one. Also drugs can make a huge difference, in my case amongst other strategies they have given me back a quality of life. After a year working with Pain consultant to get the right drugs at the right doses for me I have few side effects and they are certainly preferable to the pain. I also do exercise and alternative therapies. There are many, many drugs to choose from, and not necessarily opiates. There are a lot of myths around drugs and people become afraid to take them. Which is worse? The Pain or the drug? If you leave your pain too high for too long, your pain will get worse, permanently, because your neural pain pathways will become more and more established and this cannot be undone. The main risks: NSAIDs: 1 in 1400 chance of fatal stomach bleed; Opiates: 1 in 3000 risk of addiction for patients who actually take it for pain. Addiction means behaving badly in order to get non prescription supplies of a drug which is physiologically addictive. Good luck
I sometimes have have had to ask my GP for an adequate pain killer that i know is avail but never offered, this is not right surely?
I have been in excruciating back pain for years from spinal cord, am not paralyzed, so I feel the pain! I also have pudental neuralgia, which Doctors in the US know nothing about and don't seem to want to learn. I am in blow torch pain from rectal-anal entrapped nerve, yet they have kept me on the same pain pill for years, even though it has no effect! Just got out of the hospital because of symptoms of heart problem, but I knew even though they would not listen that my back pain is causing most of my symptoms. All test for heart were negative. I feel my back is crushing my chest and rib cage, getting worse every day. No one listens! I am afraid of the future of just getting to the point of not being able to function. I also would like to see more alternative treatments! I agree with so much that's been said on this site. I have been to pain management and after a time they do just release you when they say there is nothing more to help you. I think that's just a cop out! Yes it all affects the family too and friends, etc. All I have left is prayer!!! Hugs, Pat
GPs have no training in chronic pain, hence the dreadful suffering and inappropriate drug regimes one sees in these pages. Please make GP training in chronic pain compulsory. It's certainly justified by the number of sufferers.
Bowbells is 100% right I went to see a GP about chronic pain and all he said was "There's nothing I can do "
Who is collecting this info and to what purpose please??
I would like to see a doctor who has had to manage his/her own chronic pain.
Not just given another prescription for a new drug that the doctor has no idea how it would react to the drugs he has already given me.
To see a doctor who actuality reads my notes before he decides to just get rid of me as fast as he can.
More pain management clinics so if a flare up occurs you could access immediate support, my pain consultant made me an appointment to see his specialist nurse as I was having stomach problems with anti inflammatories, that was on 27th November, my appointment is not until 8th February next year in the meantime I m in agony please help us pain sufferers.
Doctors refusing to follow pain clinic advice is my problem. When I was an inpatient at my local hospital they saw & heard the pain I was in during the night. They called the pain clinic for help for me & they recommended oromorph for breakthrough pain and I slept better than I had for years. I only took it when I was desperate for sleep but when I went to the doctors for some more he was very rude about the pain clinic & refused to give it to me. I have avoided seeing him since as his behaviour upset me so much.
some help would be good.i have been offered a place on a pain managment course some time..and to stop certain painkillers.am now at my wits end was really hoping the pain clinic would help but no they havent.back to the insomnia and constant nerve pain with no hope at all.
I'd like to see more staff dealing with admin to allow specialist gps more time to see patients.
Oh and to stop losing patients paperwork! PLEASE? (written in big') in in big because that can be even more distressing after a five hour wait to see a nuerologist, same for an mri etc etc,
Earlier referral to a good pain management team!
It took six years for me to get a referral. I'm sure I'd have been able to carry on working if I'd had help sooner.
GP's taking you seriously! so dismissive and downright heartless much of the time... as if you are making it up and can't be in so much pain because you are 'too young' or something like that. Doctors need to be trained more to recognise conditions causing pain and to have more empathy with people.
Apart from all the money government and drug companies make.
Why the hell do nhs and other so called support groups not offer alternative medicine.
When,when trained its costs so very little.
Eg Reflexology,chiropractors,oesteopaths,Reiki,acupuncture to name a few.
When my mom and dad died recently,I started drinking too much,so sought help and had a bit of reiki and acupuncture which did help.
Then,I was told its stopped due to cuts.
How totally perth etic,when I asked why?
Answer was down to insurance.
I thought how mad and stupid,everyone I`ve ever met explained that it helped them.
Doctors just wanna keep changing tablets all the time,I asked if possible to refer me for reflex or reiki or chiropractor,no can do,and now I`m skint,having spent £1000 s going privately and still fed up to the max,anyway hope things look up.
Roger fed uperer.
Here's my take, based on my experience:-
GP's should not treat chronic pain (I've seen more bad GP's than good, most wing-it at best). Patients should have the option to see a specialist after 6 months (without a long waiting list). For instance; CRPS has some parallels with Cancer, both are largely preventable, one is cells attacking the body, the other is the CNS attacking the body. Both can be terminal, I've had a full-body flareup and it is the most extreme pain you can imagine, everywhere!! (even with a high dose of Morphine and Fentanyl) - That is not a life you can endure. One is a high priority, the other is WAY down the ladder. I'm not saying cancer isn't serious (although it is questionable treating people with lung cancer while they are still smoking), the attitude that you just have to accept pain while you wait six months to see another consultant (usually zero collaboration between them) isn't right either.
Had I been treated sooner, the NHS wouldn't be spending thousands on prescriptions per year for me alone. I've lost count how many times I've seen my GP, plus A&E, pain specialist, orthopaedic, and now psychiatrist this year. This has been going on for some time (previous bounced between orthopaedics to physio mainly). There are many thousands of cases like this.. It doesn't seem very efficient, the softly softly approach isn't working. There are doctors who specialise in this condition, plus many treatment options out there (a few are non-invasive).
All of the above is more applicable.
Moderation team
