Restless Legs Syndrome
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ESA Assessment (UK)

Hi Anyone in the UK had an Assessment for ESA for RLS or anything that goes with it depression due to last of sleep and mental health etc!

If so how did you do?

Thank you for reading

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No, what is it all about then. My father is really depressed at the moment.

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The first time I had one they forced me back to signing on with 30 hours of job search a week. Sleep isn't a requirement it seems even though we meant to sleep one third of are life's. They even had my sleep assessment of which was 2hours first night and 2 an a half hours the following night.

Make sure you go in to grate detail about how it affects your life so that you can get points for a range of topics. I didn't so got just 5 points for anxiety. Kind of cruel that I didn't get help with forums and stuff considering they knew I was dyslexic also.

I'm waiting on a second one now for 2 months. Guess they are waiting till Christmas to send me back to work like last time.

I'm at a point where I would swap my mobility for good sleep but then saying that having legs isn't a requirement for working in the DWP.

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I've had two assessments first one was put in WRAG second one in support group i have other issuse besides RLS just this first time face to face , She arrives on tuesday morning and im dreading it its being recodered i've done a sleep diary they've got my medical notes . we'll see what happens i guess . Good luck to you hope everything works out ok for you .

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I have other problems too. Body jerks that leave me with sprained/tender joints. All the jerking is taking it's toll on my neck, back and head. The jerks are so strong that it's any wonder I get any sleep at all. It happens all day long any time I try to relax. I've had a permanent headache for some time too. I'm 33 going on to 60.

Still can get about tho and I'm guessing that is what makes it hard to prove that I'm unfit for work.

Thanks for the luck I'm going to need it for sure. Good luck to you too.

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I was unsure as to what you meant by an 'Assessment for ESA for RLS' so I Googled it.

So to be quite sure that I have the correct understanding .... are you asking about convincing your government that RLS should be considered as a legitimate disability?

If my assumption iindeed correct, I can categorically hereby advise, that I too was forced to experience the same consequences, as I feel that you also had to endure.

I was interviewed by a completely uneducated and uninformed idiot government worker.

I can honestly say that this fool had absolutely no knowledge of what I was talking about and therefore my application was instantly denied.

I was absolutely devastated and it was then that I decided to write my 'Quality of Life Statement', of which I also had signed by the specialist that diagnosed me, stating that I had the worst case of RLS that he has ever witnessed in Australia.

Well, that did the trick. I was immediately offered a full Permanent and

Total Disability Support Pension, which means that I do not have to undergo any further interviews, examinations, explanations and/or discussions with any government agencies ever again. Others, who are on the disability pension, have to endure this kind of persecution

on a yearly basis but because mine is stamped with the words 'Permanent and Total', I will never have to be assessed again.

He had actually made his decision while I was still in the building. If my memory serves me correct, his decision was made between 5 -10 mins after the conclusion of the interview, (and now, in hindsight, there is absolutely no doubt in my mind, whatsoever, that his mind was definitely already made up before he had even met me and because the office where the interview was conducted, was totally void of any communication equipment whatsoever,

eg; there was no phone, no computer

and no reference books to assist him in his role of decision making.

BTW .... I was so incensed by the treatment that I had received during the said farcical interview which was conducted by this little man in a black suit (I will never forget him), and who had unceremoniously. instantly denied my application, so I immediately implemented a formal complaint against him. How dare he treat me like a complete fool. And

I was still actually in the the building, I might add.

I am also unsure of which country you are from and so I would expect that the rules would be very different but good luck anyway.

Paddy

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Your assumptions are indeed correct. The UK government has been changing all the rules and how things are done. Been so bad people died waiting on a claim. Some have even taken there own life's. Luckily I'm not as proud as some people but can see why some people would be driven too it.

They have PCs but that is only because it is a multiple choice. They're so unskilled the PC tells them what to do base on condition/answers. The lady I seen apologise as she had to check leg movements even though she new it was a brain condition.

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I believe they are changing a lot of rules and regulations here as well in Australia, but they don't concern me as my file is stamped 'Total and Permanent', and they are obviously doing it to make it more difficult for people with disabilities to enlist help. I believe it is exceptionally difficult for those suffering from PDSD.

I know many people who are suffering with this condition and the stress and the extreme pain they are under is unbelievable. And it's not just the government, it's the actual services themselves that are causing all the difficulties, it's the service itself. It's just simply not fair.

Maybe if you sat down and wrote your quality of life statement it might be a great help. I would also suggest that you get an extremely sympathetic letter written by your specialist.

If you need help with the quality of life statement .... just ask.

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How would I go about doing a quality of life statement? It is hard trying to prove how tired of being tired I am.

I'm already at a point where I'm getting regular blackouts or close to passing out where I tend to not know where or who is about for a thew seconds. Even getting some twitching like the body is trying to pump blood to my brain for the last week or so. It's like a head rush some would call a free buzz that goes well pass lightheaded feeling. i feel quite scrambled and trippy for a while after i realise where I am and who is about. Been getting IBS for some months too so things are only getting worse.

So got crazy RLS that not only drives my legs mad but have these big body jerks that happen any time I try to truly relax. For example sitting and just chilling with out doing anything I would feel this pulsating in the back of my head and I would know it is about to come. Been leaving me with a permanent stiff neck type feeling and a sore head for shaking it about so much. Normally I would get better sleep as the night goes on but now that I got IBS that seems to build up the more time I spend in bed.

Lol I guess I kind of know how to write one i'm doing it right there ^^^ :)

I got no points on my ESA :( I'm guessing my problem is I can keep going even tho it was making me sick when I was last working. I'm far worse now than I was when I was working over 2 years ago. I do not go out much and I have no friends of my own due to withdrawing from life as work was a killer so had no time or energy for people. Living with my mum is the only thing keeping me going.

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No you could not be more wrong. Once you begin, and it all starts pouring out (which it will), you will find that you can't stop.

I honestly don't have any copies of my personal Quality of Life Statement.

but I promise you, that when I finish texting this, I will make a serious and conscious effort to locate said lost document.

In the meantime, I will concentrate on trying to describe my chapters.

CHAPT ONE

This very first chapter is an overall explanation of how RLS has affected your life . (2 pages)

CHAPT TWO

MY PERSONAL DESCRIPTION

(This chapter should be extremely easy for you to write). I will tell you how easy it was for me.

MY personal description of the feelings of RLS.

At the time, I knew my RLS would kick in around 7pm. So I sat down with my feet up on a footstool (making sure I was extremely comphy), and with pen and paper, in hand, ready to go, so I slowly and with great care, wrote down the symptoms as they arrived. (1 Page)

CHAPT THREE

MY FALLS

The inevitable falling was not caused directly from, RLS. Unfortunately (or maybe fortunately), since joining this site, I have been advised, and I believe that advice ... that my constant falling is not directly caused by RLS, however it is indirectly, as I spent 6-8 hours every single night of my childhood kicking fresh air. So my cartridges are almost nonexistent.

I have given you a lot of information tonight. I hope it wasn't too much for you to take in. Give it a go. You'll be able to do it and good luck.

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Looks like some thing I could manage. I'm ok when I got points to cover then I can get some paragraphs.

Thinking we are more alike. I'm not falling down but my knee gives way quite a lot. I use to do a lot of kicking too. Now the movements are rapid that I violently rattle.

Think I need to push more on the fact that I keep nearly passing out. That alone should get me 15 points and you only need 15 points to pass. Going by this website

sense.org.uk/content/esa-de...

It is all madness as I gave them a call 2 days ago and could barely hear the guy over the background nose. Said I would get a call back next day and didn't :(

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I feel you sweet totally understand what your saying your knees my back lol I have a bulge pressing on my spinal core won't let them touch it at the moment its bearable although the base of my spine kills when I sit down, I couldn't phone them I get my daughter to do the phoning im ok with voices I really know but anyone with an accent or like you with lots background sounds im naffed . . I hope you get sorted soon :) not fair ho we're treated like non humans :(

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I do have a bit of a problem with my back also but seems more like a trapped nerve. It's quick OMG what was that sort of pain that is over before it has started.

I had a brake down in email to my Job centre adviser and then got my call back. He didn't have my new number apparently. You would the systems are linked to the job centre(they need to change the name there are no jobs there, Computers, job brods all gone lol)

But guess what the guy was useless and of no help what so ever. He's that useless he didn't bother to save the number to the DWP system as I made a call to a different department(PIP claims) and it was still the old one :(

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you can't claim for RLS even in the US you can't but you can for anything that RLS causes such as mental health,depression , anxiety etc! keep a diary putting down hen you go to bed and getting up going back to bed and so on plus how your feeling I also put in it how I feel that no ones listening including so called neuro dr just let it all out I do even swearing on it I roughly get between 6 to 8 hrs a week sleep just pour your heart out .

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Taylord 1984Crazy isn't it ,,, as you know I was to be assessed the other day my daughter and me waited all day............ and the assessor didn't turn up as you know if I hadn't gone for the assessment I would have had my money stopped but is they don't turn up then nothing happens ooooooooooooooor they claim they went to your house and no one was in lie lie lies.... turns out the assessor was ill the usual excuse they use doesn't matter what I went through for days and days before I was suppose to have been assessed gggrr :(

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I would take regular pictures of my self at home making sure the meta data was enabled for prof of being home.

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Good idea :) will next time if it happens , i only go out once a fortnight and thats to do the shopping lol my daugher was here and being a small village everyone else knew i as home if DWP quiry it thn id get neighbours to write in evidence for me saying i was home ,

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You need the Qualityof Life Statement too

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Hi Flyinglegs

We have about the same thing as you cep we have to prove for two different things 1 for DLA (now called PIP =personal independent payment) which is for disability payment that's for help with things you may need (not a lot of money) at the moment I get indefinite DLA (disability living allowance ) pretty soon will be changed to PIP which you have to have assessments every couple years no more indefinite payments then you have to have assessments for ESA = Employment and support allowance you have assessments every year...every 2 year.... or whenever they feel like calling you up if......... you fail to get points then you can be forced to look for work and go without any money for 6 weeks which means you can become homeless cos your housing doesn't get paid plus you can't get your meds free this government have totally naffed peoples lives up thousands have died either through their health or killed themselves because all these assessments causes stress all the waiting to find out what score you got , I was supposed to have had my assessment the other day at my own home my daughter waited all day............... the assessor didn't come can't tell you how much stressed I went under waiting no wonder people kill themselves these assessor that work for the government playing games with peoples lives my daughter finally got through to them on the phone the next day turns out the assessor was ill hmm.... they use that excuse all the time. I can't tell you how I was for the days before I was suppose to be assessed but it was hell . sorry I've babbled on but folk need to know whats going on here it's crazy.

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Get your specialist to jump in and throw some weight around

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the DWP don't give a toss what your dr or specialist says been known for someone with C/Palsy to go for her assessment and the assessor to say fit for work in near future as they'll get better hmm... obviously some assessor doesn't know what C/Palsy is or a guy went with one leg and the assessor said both the man legs were find and he could walk this is the kind of thing we're up against .

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Just to let everyone know the assessment didn't happen as the assessor was ill hmm.. the usual excuse they use but putting me through hell for nearly a week doesn't matter to them :'( now I've got to wait for another appointment date they're using me like a puppet leaving me hanging ggrrr I hate it .

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assessor not own a mobile? They take the piss for sure

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I don't know but I don't own one lol they don't have my home number I won't give it out .

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I attend both ESA Work Capability assessments and PIP medical assessments with my clients. You aren't assessed on your diagnosis per se..you are assessed on how your illness effects your functioning in each of the areas you're questioned about. Saying you can't sleep isn't enough to qualify. However if lack of sleep effects your memory, focus, concentration, ability to learn new tasks, ability to retain information, has caused you depression, anxiety, the side effects of meds you take to manage the condition causes you to be constantly fatigued, the lack of sleep causes you to be constantly fatigued and unable to look after yourself properly e.g you self neglect (not bothering to eat, wash etc) and stops you from pursuing social activities then you will qualify. I tell all my clients when you're filling out those forms and at the assessments themselves, you MUST answer from the position of how you function on your WORST possible days. So from the days when you've either not slept at all or had very little. Hope this helps someone

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Thank you for your reply Bossy50

I did actually put everything you've mentioned and more as im also hearing impaired and suffer fibro and BFS ( Benign Fasciculation syndrome) my lack of sleep does cause problems with concentration and focus and coordination , im one of these that'll start cleaning a room say ... go into another room to get something and start cleaning that one forgetting what I went in for go back to other room and so starts again I end up up side down back to front lol I only eat once a day and never at any given time . I agree you have to put your worst day which is why I kept a diary not just on sleep but everything I was feeling even the swear words. I live in the stick no buses nearest town is 9 miles away I dread being told I have to sign on or go back onto WRAG as it's cost me £20 each trip to town plus when I do go into town even shopping I have to dose up on meds as I suffer IBS from anxiety have done since childhood only suppose to take 4 tablets I take 10 to 12 not all at once but through the night .wish there was someone like you round here that ccould help me through when I do get the new appointment doesn't seem right if you don't turn up for appointment you get sanctioned lol , Thank you for your help x

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I think that is where most of us go wrong. I did kind of assume they would know what chronic sleep loss would do to a person. I have written raw unfiltered brake down of how it affects me and how they are making me feel by having to appeal. I'm even leaving in my rants that came out while doing it. They will see how mentally stable I am.

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I've done that too on my sleep diary not just sleep diary but rants on how im feeling and what my thoughts are leaving nothing out .

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I don't know why you give the DWP sleep diaries ?...I can't see it being of that much benefit to your claim. All they are interested in is the claimants ability to function as a result of little sleep. If I can help you in any way I will try to...

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I thought as much. I don't understand how people even do a sleep diary. I can't be looking at the clock all night. I gone basic in that area like saying it takes more than an hour to get a sleep and will be woken by my legs not long after. Never waking up refreshed and feeling worse than when I went to bed more often than not.

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I dont clock watch good lord lol i look at the time when i get up on the tv lol a sleepdiary helps me let off steam i rant more on it than owt else , Bossy i give them it maybe more for my benifit than theirs mine tends to be more rants and how im feeling than go to bed , get up so so time nhhh mre than that goes on to say about fibro too x

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If you go to Tribunal then you will likely succeed..I have always found the panel to be really nice...they always have a Doctor on the Tribunal panel. You just have to be careful to earn yourself as many points as possible. You'll see from your scoring sheet the DWP send you where you didn't get points and they are the areas to focus on at Tribunal. I last represented someone who went from just 8 points the DWP gave them, to 21 points given by the Tribunal Panel !!!!

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the last two assessments i've had havn't been face to face first one i was put in WRAG 2nd one i was put in support after i did a MR never been to tribunal nor think i could cope with going to one that's my fear i can't cope with places i don't know nor folk i don't know i only go out once a fortnight and that's to do my shopping i go by taxi A to B my neighbour offered to take me when taking her children to school but i can't do A to C to get to B and sitting in the car while she takes them into school i can't do the waiting . i can't take anything that just crops up everything has to be a plan if it sways off then im naffed and get myself into a taffle , I don't know what points i got they've never said so i've no idea what to work upon all confusing to me . i liked my life before my own little bubble i lived my life without anyone messing me about i was one of these people that didn't know what was going on in the world till about 2 yrs later . i don't own a clock nor lock my doors not have a mobile thing can't be doing with texting does my head in lol. sooo yeah no scoring sheet for me i have everything as i asked for SARS everything apart from notes of the assesser only the heading of it saying not for the claiments eyes.... im thinking i asn't actually assessed by anyone .

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... I need to add on what I've written above - you will be asked either on the form itself or the panel Doctor will ask, what percentage of your life is like the worst days. If you've put on the form aspects of your condition 'varies', it's very important to say that, for example, some days you may have the motivation to prepare a meal but it takes a lot of effort and concentration is effected by fatigue. Also an important issue is if you need anyone else to help you to manage your life. Although I'm a professional and still work, I have periods when I'm off sick (which I am now) as I've become depressed and anxious from doing my job with little sleep and I am struggling with medication. Opiates are the only thing that helps my RLS but if I take the amount I need to eradicate it, I sleep too much and am foggy all day. I can't find a balance...when I'm off sick I need a bit of support from other people to deal with my affairs and prompt me to do stuff. I have other health problems and my Mum (I'm 52 !!!) has to remind me to take my meds for those and remind me to get my repeat prescriptions. She also prompts me to get out of my PJ's and shower, encourages me to eat healthily because I'm so tired I only eat rubbish as it's easier to deal with. I literally let myself go in all areas. I got a speeding ticket but did't deal with it in the timescale allowed to get just a fixed penanlty, it proceeded to court and I ended up with the 3 points and a £175 fine instead of the £75 if I'd done it when I should !! So, if I were to make a claim, that would be the sort of example I would use and be awarded points because I need assistance/prompting to manage important areas of my life.

Sorry to have gone on a bit but having been to maybe 40-50 DWP Assessments and Tribunals, I feel my experiences may benefit others. Ironic that at some stage I may need to make a claim myself !!!

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Gosh yu sound like me lol how you manage to work i don't know but i know i couldn't , must be hard for you going through all them assessements and tribunals with folk hearing all their stories etc! hearing all the sadness the government are putting folk through it's not right and time they were stopped and held to account for what they're doing . I hope you've had a good daay yourself and hopefully no more speeding tickets hopefully you've checked on the new laws of meds thats not allowed when driving damn laws keeps changing no one knows where they are meds you can't tke when driving but far as DWP are your allowed to opperate a mahine hmm... odd.

thank you for helping and for what you do for others hich there was someone round here like you ,

x

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Oh yes I know all about the laws and driving with meds, I try and keep my driving to the hours my RLS is not too bad, usually between 10.30-2pm. That way I don''t need to take any tablets. I still get RLS but it's manageable between those times...when I'm off sick I don't really drive at all.

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