Help Needed to Get Chronic Pain on the Map. PLEASE READ and Help Improve Our Care and Treatment

I have previously written a post about there being too many people on here who've had poor treatment by health professionals and who are suffering with horrendous chronic pain and not being listened to. Very little is discussed about chronic pain in the media so I want to change this and I need your help. Any ideas on how we can do this are welcome and I am thinking of putting a petition together so any help with the following would be amazing.

It would be great if everyone is interested and wants to partake to put a succinct account of their story. We need to keep it straight to the point, without going off tangent but making sure it's factual and in depth so people can see how much we go through.

How about we have sub headings, such as Diagnoses, Current Symptoms, Current Medication and Effects, Past Medication,Effects and Why Stopped?, Past Treatments, Ongoing Treatments, Future Treatments (if known) (For treatments, include major surgery, minor ops (day case) e.g steroid injections, ablations, physio, chiro, acupuncture, etc), Health Care Professionals/Services Involved (e.g pain clinic, OT, GP, Consultant, Physio) but don't give names! Other Treatments/Relevant Info (e.g TENS machine or anything else that won't go anywhere else! Tell me which area you live in and also if England, Ireland, Scotland or Wales.

If I've missed out a vital heading please let me know. I'll do mine tomorrow and post on this thread. If you want to take part but don't want to put it on a thread, you can email it to me sprice123@sky.com you can also remain anonymous if you want. I will try and put a Facebook Page on too, and will let you know the details.

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  • Ok, this morning 5.45 am, (hubby leaves for work and I do my admin in my comfy bed). I have been on the 38 degree website. I was going to ask them to mentor our petition, but I see that they have a do it yourself page where you can use their templates to gather support and run a petition.

    We must be clear on what demographic we are speaking up for - everyone with cp, excluding who? (those who are supported by other agencies)

    It would make a good comparison study cp against stroke, cancer, diabetes etc this will certainly highlight how the nhs treats cp worse than other conditions.

    We also need national stats - % of population with cp, how many treated successfully by nhs, how many caught in a chain of failure, inc meds that don't work, % attendence and outcome at pain clinic, why some people don't give pain clinic a go, anything else of importance too.

    Perhaps we could make a questionaire for health professionals to answer anon about how they feel about the cp service, what they need to make things better for them to do their job better/help more people, what their views are on alt therapies.

    We could do a similar/same one for alt therapists too. It would be good to know % of their clients with cp, outcomes, lengthn of treatment, most effective treatment etc

    Might be worth approaching some of the major drug companies for data, conduct our own survey of users to see if it matches their outcomes. If there's a huge difference we xan petition them for change too.

    We also need a task sheet to divy up the jobs - not just to prevent a few from doing all the work, but to give ownership to everyone, there should be no-one unwilling to do a bit of research, afterall we all manage to post on here, so a bit of surfing is much the same.

    We need targets to work to, fairly loose to give people time to think and research.

    We need a place to collate all the info, fb is as good cplace to start, we can get support from non cpers too.

    We could try and get some info on how other other countries deal with cp, whether it's better or worse that the uk way, if better, what are they doing that uk is not.

    We also need 2 or 3 things we would like changed that would benefit the most number of people, thec main one would be -changing we can't do anything for you.

    After mp support, we need to keep them in the loop, ask them what info we need for a sucessful campaign that will be taken seriously.

    Maybe we can get celebrity support too further down the line when we have something concrete, then radio and tv features.

    That's my brain power used up for the morning.

  • Hi thanks for all the ideas they're great. Can you explain what you mean by approaching drug companies? What information/data would you want from them?

  • Not sure we would get any. But basic stuff like numbers of prescriptions per annum, the financial cost to the patient, recommended length of treatment. Enough to make comparisons against other drugs and therapies.

    It may be a thing to do further down the line when we have more general info.

  • Got a response from John Lamont MSP, he's happy to help us. I've copied him the link to this thread and outlined what we plan to do.

  • This is a daunting , excellent task but I am happy to help in any way I can. Is there a university/research department that might take an interest? Two professors at one of the Manchester Hospitals or the Uni - will check - has just been given 5 million by Arthritis Research to develop services so would Arthritis Research take an interest? l will contact our local MP Linda Riordan this week when we are clearer about our direction.

  • Have to go out soon so will get back to your post later about chronic pain and our experiences. I do support Arthritis UK they do a brilliant job, but as yet no miracle cure for chronic pain. See you later

  • Thank you so far for your help, we need to get more people on board. I have designed a logo which I can't add to this so when I've set up the Facebook page, I'll let you have the details and you can see it there. The concept is an elephant with the words,'What's my problem?' in a speech bubble. The elephant symbolises 2 things, 1. an elephant in the room, in other words it's always there but not talked about and 2. An elephant is perceived as a big strong animal. Because pain can't be seen, those who don't know us won't see there is anything wrong as we look 'normal', hence the slogan. Plus we look big and strong but we are not and again that can't be seen. What do you think?

  • Sounds good, and a strong message.

  • I think your concept is spot on, if it can't be seen people think there is nothing wrong with you

  • It is a complicated subject with many factors involved.There should be a PAIN CLINIC in each area of the UK.Have you mapped and contacted them? Local GPs should be aware of how to refer.

  • I have set up the Facebook page called Getting chronic pain on the map. Please all join.

  • Are you going to be the main co-ordinator?

  • Hey sharelle ive joined you on Facebook, maybe if you post the Facebook address in a separate blog more people might see it, keep up the good work, we are all behind you

  • Hi sharelle

    Have you thought of joining forces with Pain Concern.

    painconcern.org.uk/get-invo...

    I am a huge fan of theirs.

  • Listening to pain stories is not going to help. It needs Medical people who understand how muscles and muscle functioning drives pain. Dishing out the pain killers is not going to help investigations into muscle functioning. Even if the investigations are done and the trial reports are written it is still not going to help because each person is an individual with there own way of driving the pain that they are suffering from.

    There needs to be a totally new approach both from patient and from medical practitioner. The concept of the patient being given the education and tools to investigate their own pain and the things they do that make it worse or make it better. I am not talking about the development of a drug regime here. I am talking about the investigation of how much sleep I get effects my pain. How I use my muscles causes my pain. How the mental attitude I have causes my pain. How the increased stress I experience causes my pain. I am talking about investigation into the development of I can develop ways to improve my functioning in regard to muscle functioning, mental attitude functioning and response to stress functioning.

    I am talking about the issue of pain sufferers learning about the body as an engineering system with environmental design limits. Our abilities to handle various types of stress change over time due to bacterial and virus infection or injury. However, there is almost a total ignoring of the issue that if the body's engineering system functioning has been compromised then it would be sensible to determine what the new environmental design limits have become and to investigate ways to work within those design limits.

    This approach is not going to help everyone because there are many who do not have the ability to follow it. There they need the same approach where they are given the best pill going. This is is not suitable for many who wish to enjoy there hobbies where some kind of intellectual ability is required and the drugs given by the medical profession is destroying the ability to pursue activities requiring intellectual pursuit and work.

    The tools I use are: Alexander Technique, Meditation, Mindfulness Chiropractic, Yoga and T'ai Chi. I seek out experts who can help me improve my investigation into the use of these tools. And also most important the problems that arise from using these tools.

    The book "Cracked: Why Psychiatry is Doing More Harm Than Good" and "Bad Pharma: How Medicine is Broken, And How We Can Fix It by Ben Goldacre" are worth reading. They are the evidence that enables a presentation on things need to change. The system was that anyone who challenged a doctor could be labelled with a mental disorder. Many people who suffered chronic pain after an accident found this at first hand in the courts. A neuro psychologist could stand up in court under oath and say that losing an hours sleep a night had no effect on you.

    This may not be want you want to hear. I have no interest in telling my story because it serves no useful purpose other than enable other pain sufferers to share a certain understanding that cannot be put into words because of a knowing that comes from experience.

    Once a long time ago I let rip about my story of horror to a Zen teacher. As I got more and more into it the more distressed I became. At a point some way though my telling of my horror story the Zen teacher shouted at me "stand up straight". I did and all the distress I was experiencing vanished for a brief instant. I have been endeavouring to stand up straight ever since.

  • Great idea!!! I live in the US in Virginia. I'd love to be apart of this!!! Thank You So Much!!! xxxx Mitzi

  • Hi johnsmith, many thanks for your post and I agree with a lot of what you said. My aim is to get people's experiences with the NHS and the health professionals. We need to hear the bad stuff to get it out there, then get some answers and solutions so these bad experiences lessen. I once saw a Facebook page of someone who all they talked about was their pain, it was very negative and my reaction was that thinking and talking about it endlessly can't put you in a positive frame of mind and when you aren't thinking about it and doing something different it can take your mind off it. It's going to be a hard task and not everyone will want to divulge their stories, which is fine. Any practical ideas would be welcome.

  • I agree with you and John.

    We need to find out the extent of the NHS failing to treast chronic pain appropriately.

    We need to suggest ways to improve it, which may be as John says, to give people strategies to understand their pain, their internal workings and how life affects it.

    I think help is needed for people to let go of the life they had before cp and create a new life. I may be wrong but many people seem stuck and unable to move on.

    Sharelle, you are talking about distraction and the best form of distraction is getting into the flow, when you are totally focused and absorbed by an activity. It can be anything and there should be opportunities to explore different things to find your perfect flow.

  • Hi.sharelle..first,,I've been in chronic pain since I was 23! Now 38.. upper lower back..legs came first..then rib chest cryed to doctor to help..oh your fine they say..can't breath ..sick with pain..still young what's up ??? Fast forward..turn 30.. lower back went good this time..had a lamotonty . Told I've 3 level d. d.. more doctors come go..told I he this thing called chronic pain...after 10 year..so few year down line..got I'll every joint..full back bad..told oh nothing wrong just from old back pain..working too hard..after 6 month begging ..sent for MRI..doctor rang me..felt bad I think..said its not good.,reason feels tail bones bust is disc moved forward and big bits come out sat on s1 nerve..only a op can fix..she left..got worse worse..physio..only saw me 3 times..walked me doctor..conceren about me..said I don't trust doctors.. he thinks I've a.s.. waves on sweat..cold ..felt was during..ribbs killing neck no longer can move..doctor made me feel worse said I am going to die on morpie...oh bloody great.I'll very I'll..you made me feel better.. well never sent me MRI..or reumo... cross.like I said feel like they think begging for drugs..not I've 3 kids..2 austisc.. mad..oh..went 4 times again..sore another another..and yet different finally sent for..well had letter months away rrumo.. no MRI.. day when can't..cope..I've looked to go private..but to compancatited.. and one place said no..has need doc refer has need info...I just need to knew..what's wrong..my boys are both complaining with bad backs..if same has me ?? Waiting???!! I've had no good experience at all..thought I was lose ring my life 2 year ago..l full weeek coughing blood up..very gravely I'll..3 doctors said nothing wrong..8 the day..looked like I was dead..sent straight to hisptail..both lungs full phymiona..8 days in..now all this time later get chest pain were blood was.2 year after..nurse said should been in days sooner..my god eh...who's to blame.. another one 8 year ago my trip sunburn rash all over..very ill middle winter..took doctor every day worried sick 5 yes 5 doctors after..my Nana said she s got sky let ferver...yes she did...very I'll little girl...can't trust tell me..she could of got menigist.... never been that I'll..old and new doctors..now they no what it is...she had it years ago..trust gone..don't get MW stareted on the training with doctors for austim.. took till oldest was 10!!!!!!!.. youngest 8.. that's bad ..we trust them,,meant to..why they letting us down..why..I've so many things to tell..even my 90 year old grandma..another story... no care...no care..I've been a good carer up till last year... one says work..other says no..one says get sit down job,,another says no make worse..can't..can't..need my life back..and wouldn't go in hosptail in less very I'll....or need drip in...sorry so long..give us good doctors back the ones that care.. I knew doctors who have gone private..work next door..to doctors..but get more private.. so get paid from NHS..but more???!!!!

  • Wow you've had an horrendous time. Can I use your information for my cause please? I'll keep your name out of it x

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