ESA appeal question - sitting issue...

Thanks for your reply Gordon.

Just wrote you a lengthy reply and lost it!

In summary, I've looked through the ESA form again, and am really struggling to see how they didn't at least award me 9 points for being unable to sit/ stand repeatedly at a reasonably adjusted workstation (unless sitting on floor counts, but using a raised surface like that for 30 mins repeatedly would still be a problem), and 6 points for finding repeatedly raising either arm above my head significantly painful (yes, I did state this was an issue, and thought it was clear from my doing it once at the assessment while my neck was just starting to get aggravated.

I tried to explain on the form that mobilising and lifting things also become a big issue once my neck is becoming aggravated (which happens very easily with normal everyday movements and travel vibration etc).

I'm wondering if they are discounting everything because I am very occasionally able to use extra drugs (which I get rapidly resistant to if used more often) to do outdoor pursuits in a limited fashion (followed by more extra drugs, and lying down for about 20 hours after a few hours of activity), and because I try to exercise regularly - doing the 2 things in the gym/ pool that I can achieve with my neck kept in it's optimum position, and walking as a "one off" each day, if possible, as part of ongoing exercises to maintain my walking (followed and preceded by more lying down).

As I now need to see my GP about "fit notes", I think I will ask to be referred back to my old Pain Consultant, so I can get the opinions of someone used to treating chronic pain.

Dear Gordan and other Moderators

I have just received the official DWP letter from the DM stating why they award me zero points and how they are justifying this. Quite frankly I have gone from shocked to livid.

I have now gone from wondering if I even wanted the stress of appealing to really wanting to see these people face to face. I know in my case that we can manage without this benefit if it is removed, but my heart goes out to those who depend on it alone, and who are too depressed or confused to challenge the DWP.

As I wondered, the DM has basically jumped on the fact that I manage to lead an active lifestyle despite my problems, and that I have kept my range of neck/ arm motion going and my muscles developed (due to a lot of specific exercises and effort on my behalf, but clearly being proactive with your condition goes against you here!) despite my neck to say that I can clearly do anything with no real issues! He even makes it sound like me being motivated goes against me. There also seems to be absolutely no mention of "repeatability" in any of his statements, making it sound as if just once is still the ruling for all things observed at assessment...

There is no mention of me even having widespread nerve pain (he makes it sound like I've just got a slight pain in my neck occasionally), or how I adapt to do things like sitting in an airplane with my head fully supported forwards against a wall with my pillow and dosed up on extra drugs (he's just used me travelling to the US to say I can clearly sit for lengthy periods with no problems - not sure how that position will accommodate a work station!) He even seems to have discarded anything written by my GP and Physio, saying he wonders if they realise how active I am!! (Yes they do, and they support and encourage it! Endorphins from exercise are helpful with combatting pain, sitting around being depressed and inactive is not.)

I'm not sure the nice nurse who did my assessment is to blame either, as I can recognise words from the assessment which have been taken completely out of context, changing what was being discussed altogether! Like me trying to explain to the nurse, that as literature on Chronic Pain says that concentrating on symptoms is not helpful, I simply describe my symptoms from my neck to my husband as "sore or very sore" - this is more code than anything, and "very sore" means I have screaming nerve pain rampant throughout my body, and will need to curl up and lie very still for sometime, and will probably barely be able to move for several days!! I think I tailed off before finishing the description, but as my afternoon drugs were making me wacky and forgetful by then that is par for the course! (I'm sure the nurse kept typing it down each time I forgot what I was saying or "lost words"...)

I think I now understand why the decision to deny me ESA was made less than a week after my assessment (the nurse told me they are currently typically taking about 5 weeks to reach a decision). I suspect this decision maker simply read my activities (which I clearly state in my form), made his decision, then just tried to pull bits from my assessment to support it. (Moving you from Incapacity Benefit means, I think, that you cannot get denied ESA without a face to face assessment?)

Just been discussing it with my elderly dad, and I think he's now even more worried about wanting to hit the DWP representative at the appeal if I take him as a witness, but I think I've managed to get him to understand that the Judge is neutral, so he should at least try to avoid hitting the judge! As my dad says, you have to wonder how these people sleep at night, they must realise what they are doing is so wrong!

As far as all the individual points to mention in this letter that are inaccurate, I don't even know where to begin...

I had already spoken to a GP from my practice this morning about getting "fit notes" during the appeal. He told me that they suspect that however much they try to put down, they are starting to suspect that it is all being ignored by the DWP in favour of their own assessment evidence. He was also happy to refer me back to my old Pain Consultant, saying that they have had a number of Chronic Pain patients being rejected for ESA even on appeal, and that years old letters from Pain Consultants saying there is nothing more that can be done for the patient do not seem to be even being considered as evidence. (As Chronic Pain cannot simply be treated as easily as those who do not suffer from it may realise, expectation that any one with "serious problems" will be regularly seeing a hospital consultant would seem to fit more inline with US health insurance than an overstretched UK NHS system...)

I've no idea if a judge's decision will go for or against us on ESA, but I do hope this DM will get at least a ticking off from his superior for writing this letter.

Yes, thanks Gordon

I do fly on airplanes dosed up to barely conscious, and with my head supported off my neck in a way I could never use to sit in a chair at a workstation. As far as I understood, the sit /stand test is supposed to be concerned with remaining at a workstation?

And the whole point of my "sore or very sore" code is to make it sound calm and less dramatic (I got fed up years ago with some Drs assuming Chronic Pain patients exaggerate their experiences of pain, and make it worse by getting stressed about it, and with medical papers talking about patients concentrating too much on symptoms ). From your comment though, I'm not sure that the term chronic pain is being understood here.

It means simply pain that persists for a long time - sometimes beyond normal healing times after surgery, sometimes no injury has ever even occurred, as with Fibromyalgia, which is widespread pain (but more throughout the muscle tissues I think). The term chronic doesn't necessarily mean the pain is severe - eg people with just mild arthritis have a form of chronic pain, because it is longterm, rather than acute pain which is short term from an injury (eg from a broken bone). For me, my severe "version" gets experienced as widespread nerve pain. If I do too much of the wrong type of activity, or sometimes for no apparent reason, then it "flares up" to leave me in so much pain that I can barely move, and have to curl up in the foetal position in bed until it eases, which can take days, or if it's really annoyed much longer. Some of the best ways to help try to "control" it are to stop activities before the pain builds up too much, to stay positive (depression causes chemical changes bad for fighting pain), and to exercise as much as you can (producing chemicals good for fighting pain).

Having spent years in constant pain (thankfully no longer due to my current daily drugs and a lot of Physio), with my whole upper back completely locked rigid (resulting with me being on higher DLA mobility as I could barely walk at anytime), just trying to be upright too long without lying down now causes my back to start to relock in spasm as soon as I stop constant movement... I try to dwell on the positives now, but think maybe I should concentrate more on the continued negatives for this appeal...

I attached 10 pages to my original form (typed up lying down here with my iPad in front of me, which I also don't think is a reasonably adjusted workstation?) I tried to explain exactly what I did manage to do but how I achieved it and what my limitations were. The DM seems to have taken what I can occasionally do without taking any notice of my limitations.

I was just reading a thread about Fibromyalgia concerns, and am thinking I should maybe try to find simple info to offer them about Chronic Pain in general? I was also surprised to find that DMs are not Drs, so am wondering if I just didn't lay down the facts simply enough. I had assumed that someone reviewing your medical reports would be medically qualified.

Given the number of incorrect statements that the DM has given me, do you think I should just concentrate on the main 2 reasons I think I still qualify for at least WRAG points, then just briefly mention the rest? (Though I still struggle with the idea that the WRAG group are supposed to magically recover at some point, which isn't likely for longterm conditions.) Or do I need to address and qualify every statement?

Sorry to give so much detail, my drugs make me waffle and generally forget what I'm talking about afternoons and evenings... First thing for me to do I think is to manage to print out the appeals form...