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Restless Legs Syndrome

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laughable PIP

gypsy49 profile image
49 Replies

Here's a new one got refuse PIP on the letter it states that i found washing my hair relaxes RLS and helps to stop it wow DWP found me a cure lol gawd knows where they got the idea must be true if they said it haha! first letter states the name of the assessor on my letter refusing me PIP states a different name of the assessor hmmm didn't know i got assessed by two different people .

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gypsy49
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49 Replies

Thanks for the motivation to get up and take my shower!😂

Seriously though, I’m sorry! How stressful!

WOW, who the hell do they have do these assessments........I think a 4 year old would do better in their place. :P

gypsy49 profile image
gypsy49 in reply to

I do wonder myself who they have do them true a 4yr old would do better lol

I am not quite sure what you are saying, (I am like that most of the time - thank you ME), but -

If you have said you can wash your hair that means you can move your arms above your head and move them around for a period, you are able to get yourself in and out of a shower/bath and you can dress yourself.

Considering they assess ONLY for how you are able to function ON THE DAY OF THE ASSESSMENT you have told them you can function pretty well. The statement about the RLS will of course add to it but not as much as the washing of the hair.

I am not sure what the story is about washing hair curing RLS - are you saying THEY said that and it was a lie OR are you saying YOU said that washing your hair helps and they have then gone on to say it CURES it?

Have you appealed it? If so that could be the second assessors - they f**k up your assessment since they are not medical people and are incentivised to cut people so you appeal, then they get one of their colleagues to check over it and rubber stamp it!

This link shows how they are encouraged to get through more people resulting in poorer assessments:

benefitsandwork.co.uk/news/...

Here is a link on how they get bonuses for rejecting people:

independent.co.uk/news/uk/p...

For those assessments you need all your medical data, ALL of it, if you need to give them a binder do so! You need to tell them how it is on your worst day, not your best. You cannot be giving any information that they can manipulate and use against you. It is worse than being interviewed by the cops as they only want to catch the guilty - the @$$holes doing the interviews want to catch everyone, innocent included.

Vote Tory - they adore the taste of your pain and despair

in reply to

Her last assessment they lied saying stuff she never said. They will do anything to get their bonus and get one more person back to work.

in reply to

Really?! That’s awful! (Sorry, you meant this for raffs). Just following with interest...

in reply to

You can look back on Gypsy's posts.

in reply to

Will do.

gypsy49 profile image
gypsy49 in reply to

Thank you Elisse2 :) , hopefully your able to read reply to Raffs and see what assessor number 2 put lol gawd knows which assessor i actually saw im lost now even Belfast and DWP are at a lost .

gypsy49 profile image
gypsy49 in reply to

She didn't even ask how i wash my hair nor how i got washed/showered just ask me where the bath room was nowt else , she didn't asked me if i can touch my head nor touch my toes nor squeeze her fingers nor pinch her as she's put in her report (second name on report ) i don't know who did the assessment she spoke that fast even my friend who was here didn't catch her name but i got two reports a short break down of how the assessment went with a female name on it and a total report with a totally different name on it both claiming to be the assessor so your guess is as good as mine as to who did the actual assessment she knew i'm hearing impaired yet when asked to slow down when she first came into my house she didn't repeat her name, on the full report (second name) she claimed i met her at my front door and when finished i showed her the door lie...... my friend let her in and she showed herself out i didn't get up apart from when she asked me to reach up my back which i have never been able to do yet in the second report it says i reached right up my back which is a lie as my shoulders won't allow me , they have all my medical notes there and i sent in plenty of notes along with letters from friends and family along with a long letter from myself and a sleep diary non of which has been took into account reading what the second letter for the Mandatory Reconsideration you can tell they've not read anything at all . It's been looked into my daughter phoned both DWP and Belfast to ask why there's two different names of assessor they said that should never have happened and asked why non of my notes have been looked at DWP said she could see the ball has been set in motion to find out whats gone on that was within a couple hours this was the manager who said hopefully it won't get to appeal court as there's to many discreption????? can't spell ggrr and to send any medical letter from March this year to now along with a letter i have a MRI and am seeing the neuro dr on the 13th so i can put those letters in and i've seen a back specialist , I told the back specialist what the assessor said about the back operation they want me to have the assessor said it'd be a tiny cut and i'd be up and about doing what i'd do normally the next day he laughed and said ermm no firstly the op i need they don't even do in Lincolnshire and i'd be in hospital till im able to do things (that worries me , me being laid up with RLS ermm i don't think so) just goes to show what assessor name number one thought knows nothing. ohhhh she did ask me to stand on one leg i lost my balance cos im crap at doing that think thats something to do with my ears . I filled the form on my bad days not that i have any good days , as Elisse2 said i've put a post couple so month ago just after i got refuse PIP and put in for a MR took this long for them to respond and all lies reading the total assessment you'd think they were talking about someone else they even put (this is assessor name number 2 ) said i like to socialise ??? (how spelt) which i hate doing i can't mix with more than one person and that i go out mixing and i can plan the route of a journey 1 i don't drive so never needed to and 2 i won't go anywhere on my own i don't know yet they said i do. assessor number 2 said i build a good rapport with her and was calm yet my friend said to me after the assessor went how aggressive i was only because the woman was shouting at me i might be deaf but there's no need to shout ohhhhhhhhhhh and i had good eye contact lol yep i lip read i need to have good eye contact otherwise im naffed lol.

in reply to gypsy49

Oh how I feel for you. Get CAB involved and get your daughter to keep on at these b*****ds.

I wonder if you threatened to go to a solicitor about the lies the assessor has recorded would it do any good? Damn but this sort of crap really gets to me.

gypsy49 profile image
gypsy49 in reply to

Can't get my daughter keep at them she's going have her baby tomorrow she'll be busy feeding her etc! don't like to bother her with my problems to much . she's written a letter for me to send them along with me copying the appointments letters i have to send. No legal aid can't afford a solicitor sadly , it's getting me down specially when i was awarded DLA for life but since this PIP came out it'll mean getting assessed every year or two i can't be doing that thankfully i didn't have to do tht with ESA they gave me it without an assessment this time round im in support group .

in reply to gypsy49

Definitely CAB then, you need someone fighting your corner.

gypsy49 profile image
gypsy49 in reply to

Don't trust CAB anymore like a lot of people since they're working with DWP not only that i can't afford to go into town twice in one week at £20 a pop plus take more meds i'd never be off the loo for a week after , i know i need help gawd knows what i'll do if i have to go to appeal court honestly don't think i'd make it no loos on route pppfftt! im naffed up the creek without a paddle . struggling here even the thought f it all putting me on edge RLS going nuts as usual but wrst with stress bad enough without plus anxiety going through the roof cold sweat dry mouth .

in reply to gypsy49

I didn't realise CAB were working with DWP - damn, what do you do when the people who are meant to support you are working with those who are trying to take all support away from you?

I hope things turn out OK for you.

I have a picture of this for you, but will have to put it in my own post. I think it highlights things nicely, so keep on the lookout for it.

Most people have a generalised "sense of justice" whether that's justice for themselves or justice for others. Your story suggests that this sense is ill founded.

The response you got was probably partly to do with what I believe to be a declining level of literacy and verbal comprehension. It's also probably due to what Raffs outlines.

For PIP it is necessary for you to demonstrate that you lack mobility or generally find it difficult to carry out "Activities of Daily Living". It's probably better to think about what you can't do rather than what you can.

payingforseniorcare.com/lon...

I'm afraid that if you can't demonstrate the above then you aren't entitled to PIP, but I agree, there is an injustice in what Raffs says about the assessors motivation.

There are advocacy services which you might helpful, depending on where you live. Certainly you could seek advice from Citizen;s Advice Bureau.

gypsy49 profile image
gypsy49 in reply to

please read what i put in reply to Raffs :) save me typing again , i had one assessment yet got two different names of assessors either one was base on total lies , my written English is rubbish very rare i use fullstops and spelling isn't great although got better than it was i tend to write in deaf english . maybe i shuld have asked for help with CAB but i don't trust them since they started wrking for DWP and getting paid from them no one else to turn to i live in small village near small town we don't have that much in way of help round here .

in reply to gypsy49

Sorry Gypsy, I meant the poor literacy and verbal comprehension skills of the assessors, NOT yours! Apologies for any confusion.

As regards CAB, they are paid by the DWP for "supporting" people with claims for "Universal Credit", nothing else. I was once a director of a CAB in North Lancashire and I can't imagine them being anything but supportive, with no hidden agendas.

I frequently refer people to CAB for financial advice and assistance.

There are other advocacy services as well, CAB is more or less all over the country, whereas I'm only aware of advocacy services in Lancashire/South Cumbria.

You may find these links helpful

pohwer.net/Pages/Category/i...

voiceability.org/services/l...

northlincs.gov.uk/people-he...

I think it wouid be really a good idea to contact an advocacy service to give you information, help you with any misunderstandings, possibly be with you during any interveiws/assessments and support you emotionally.

gypsy49 profile image
gypsy49 in reply to

LOL no need to apologise it's me ;) yeah i know CAB do for universal credit for DWP but still don't trust them now bit like the assessor said when she came here she said she doesn't work for DWP and was a health profession lol yeah right... gawd knows what she was but deffo not a health profession , I've suffered from depression and anxiety most my life for one reason or another i'll not go into even going shopping i have take load of tablets stop me needing the loo suppose to take up to 4 in a day i take 10 and thats just shopping in my home town loads worst if i have go anywhere i don't know , thank you for the links i've looked them up can't just use them you have to be refured?? not sure who would do that or how to go about it can't phone them plus i'd want them come to the house i don't drive and no buses from here not that i'd use pubic transport anyway .

I do need help i know at the moment i can't ask my daughter she's going have her baby tomorrow/today

not sure what to do she usually does my phoning for me.

in reply to gypsy49

I would contact CAB, you have nothing to lose by doing it, even tho you dont trust them, you will be in no more a worse situation than you are right now and take your friend with you for support with your daughter about to give birth, then ask your friend to make the appointment for you i am sure she will help with that. You have to some how break this deadlock of not getting anywhere. come on Gypsy you can do this. And i KNOW all about trying to get out the house without needing the loo, i have the same problem and have to take Imodium. i dont go anywhere these days without my daughter and her hubby as the taxi man to get me where i need to. I have to make appointments for when daughter and her husband are available to take me, which can be difficult when making appointments for dentist or doctors. Keep at it, good luck. !

gypsy49 profile image
gypsy49 in reply to

my daughters partner not as helpful as yourr daughters husband i wish he was i'd have get taxi to take me to CAB i'll have email friend to ask her to phone CAB for me she lives in town , my step mum takes me to my hospital appointments when she can if my father doesn't have an appointment same day otherwise i have ask for new appointment , i take 10 imodium before i go anywhere usually start taking them around 6am i won't go out the house before 10am make sure they work ppffttt not always usually mad dash to loo before i go out. i've emailed couple the sites Maneva has put as you don't need to be refuered to yet to hear from them. I am trying my hardest just no one here that can do the phoning for me pretty hard emailing friend and her on phone they want my permission for her to talk for me on my behalf .

gypsy49 profile image
gypsy49 in reply to

I did have a friend sit with me during the assessment but she was told she wasn't allowed to have any input during the assessment and so the assessor use this against me by saying my friend didn't have to help me hmm...

gypsy49 profile image
gypsy49 in reply to

have tried Power.net although says in my area they replied email and asked for my post code and email back saying they don't :( and passed me onto voiceability which i have emailed early this morning heard nothing as yet , Power.net sent me another email addy for council benefits advice which i've already email as i know the lady there's nothing she can do they only deal with things like DHP and such will keep trying. sadly Lincolnshire is one the biggest counties in the UK cover a large area if anything says Lincolnshire it can get as far as Grantham or near Nottingham and im right on the east coast bout 10 mins from the sea not a lot round here sadly.

Jay48 profile image
Jay48

Hi, I’m new to forum but,

I agree with Raffs.

I work in mental health (NHS) and have many patients that get refused PIP on the first time around and often the common denominator is that people don’t provide enough info - letter from GP or specialist with details of diagnosis and medication. You have to provide the information despite you putting your GPS and/or other professionals details they will not contact them! Also, as Raffs says you have to put on the form your ‘worst’ day.

gypsy49 profile image
gypsy49 in reply to Jay48

Hi Jay48 :) They did put there's nowt wrong with my mental health even though there is much due to RLS i sleep on avage 6 to 9 hrs a week i did see a lady once for mental health but if i don't click with someone i don't click with them i can't talk to strangers that good not only that the room was closed in which i hate i like open airy rooms im one of those people that hate locked doors terrifire me (excuse spelling ) DWP have all my medical notes i know this because they wouldn't let me have them back afte they got them from my doctors my daughter phoned them and asked but they said no because they were going to use them for future ref so i do know they have them . i have replied to Raffs you can read what i've put on there :) save me typing it all again xx

Jay48 profile image
Jay48 in reply to gypsy49

Hi Gypsy,

I would definitely appeal the decision. You can also request all your medical records yourself. Down South we have PALS based in the hospital - patient advisory and liaison services. You should have one in your area and they could advise you on getting all your records.

Good luck with your appeal!

Neil

gypsy49 profile image
gypsy49 in reply to Jay48

Hi Neil

Never heard of PALS will look into it now , DWP have all my medical records my daughter asked for them and they said no they're keeping them for future ref i asked for them when i asked for SARS they sent everything but not my medical records to get them from dr's i believe it'd cost me to much money don't know what DWP won't let me have them surly PIP would have seen them or they different thingy?

Pippins2 profile image
Pippins2

Apparently you are allowed to do an audio recording of the assesment but they have to be informed beforehand .Would be useful as prove x

gypsy49 profile image
gypsy49 in reply to Pippins2

I know but you have to give them a copy of the recording too which means you have to buy a machine that records two tapes/cd's i know you can ask for it to be recorded for ESA but for PIP you have to do it yourself along with copy .

in reply to gypsy49

You have my sympathy and this might seem somewhat harsh, but this site is for supporting people about their RLS. People have however given you some useful advice about handling your PIP application, but you keep finding reasons for not following their advice.

There are some very professional agencies that can advocate for you as I've previously suggested. I urge you to seek help from these as you will get help from people informed and experienced about benefits.

This site is non professional and members are knowledgeable and experienced in relation to RLS.

I'm sorry that you appear to be ill equipped for dealing with the issues you're facing, it's important then that you find people who can support you effectively and you have to seriously consider the advice they give you.

I obviously don't know you, your situation or what you're capable of, but if, despite some physical limitations, you can carry out activities of daily living independently at the time of the assessment then you will not be entitled to PIP.

If you're having problems with RLS then share these with us and you can expect some help from members of this site.

gypsy49 profile image
gypsy49 in reply to

Not harsh just being straight nowt wrong with that i get you and hear you , orginally my post was about RLS on my first one this basically is a follow up , I gave then everything i had on RLS but as it states your not allowed to send anything copied off the internet it's hard to tell them everything, i have emailed couple of the sites you gave earlier around 4am yet to hear anything from them i am trying to sort it and i am listening to folks advice just that i live out in the sticks and the small town near by doesn't have much in way of help i can't travel to far due to anxiety and IBS i have a fear , i can't use the phone so rely on emailing or getting my daughter to phone (she's gone into hospital to have a baby today hopefully she has it today) not using excuses just who i am, I suffer with RLS 24/7 no respite those that know me knows how RLS runs my life if i sound like moaning Mertle it's usually cos im shattered and at my whits end and lost in life head spinning .

in reply to gypsy49

Can you not record an MP3 and put it on disk? If you used your phone say, you could then transfer the file to a PC and burn either an audio or MP3 disk therefore giving the information but maybe not just straight away. They couldn't refuse that, could they?

gypsy49 profile image
gypsy49 in reply to

I don't have a mobile thingy phone besides im not entirely sure if your allowed to do a copy it has to be original one don't quote me on that but i'm not sure i read it somewhere but no i don't own a phone thingy , you know how they are blumming fussy make the rules as they go along don't make it easy for anyone x

in reply to gypsy49

You know that does sound familiar. Yeah the f*****s will do what they can to protect their cheating ways - no good the victim, (and yes that is the correct use of the word), of one of their 'assessments' having evidence of their incompetence and malpractice.

I wish I were able to come along and help you. Have you checked your area for independent help? There are guys in towns near me that help people fill out forms, attend assessments and launch appeals. One of those sort of guys was very helpful to myself sorting out benefits.

gypsy49 profile image
gypsy49 in reply to

It's true they do more of the cheating just wish more of the general public knew that instead of reading the daily mail more folk have died since all this assessment stuff have come about , I live out in the sticks don't know anyone that does do it independently in town wish i did I'll ask around got to send it off this week . I've got copy of letter the neuro dr sent who i see for RLS shame it's something out of a book DWP do state NOT to send anything copied off the computer but it's from the neuro along with a letter bit of a read what he's sent they might take one look at it and think it's to much to take in lol it's about RLS and depression it causes , blumming RLS pain in my life ggrrr blumming back went yesterday ggrrr only looking in freezer went to get up and bam.... sciatica on both sides having MRI on thursday then i have an appointment with the neuro after that im going have a few words with him he insisted DWP gets in touch with him told him they don't .

martino profile image
martino

I took notes at my wife’s interview and made it clear that the key factual stuff was recorded. On advice from a DWP person the claim was on a worst day basis. My wife has Dystonia and arthritis. She was awarded PIP. Before any claim is made it is useful to know how the points are awarded and how you think your own claim should be assessed.

jewbie68 profile image
jewbie68

Waste of good ink!

gypsy49 profile image
gypsy49 in reply to jewbie68

??

Sara_2611 profile image
Sara_2611

hi gypsy49 forgive my ignorance what is PIP

Pippins2 profile image
Pippins2 in reply to Sara_2611

Sara it is Personal Indepence Payment. It is awarded after a "medical " to help with Mobility and Care costs. It used to be called DLA -Disability Living Allowance x

Sara_2611 profile image
Sara_2611 in reply to Pippins2

Hi Pippins2

Ok Thanks for that -pardon my ignorance -I'd never heard of that until now

ironbrain profile image
ironbrain

Do you not have details of how they make their assessment? I claimed Incapacity Benefit when I couldn't sleep and my GP was loath to prescribe me more medication. I had to appeal a decision at one point. Do you not have a list of the things they give points for and how many points they give for each issue? If you do, you need to assess your condition precisely, see how many points you should get for each for all the things that are relevant to your condition. For example, when they asked me if sleep caused me a problem during the day, it was no use my thinking whether they meant narcolepsy, I had to make it clear just how incapable of work one is if one does not get enough sleep. If they ask you whether your RLS stops you driving, you don't tell them, "Well, not in the morning." You tell them how impossible it would be at its worst. If they ask whether you have a problem out and about among people, shopping, for example, you don't say, "Well, I can go around the shop and work out the money at the checkout." You describe how people who just get inside store, then stop not allowing anyone else past, make you seethe; how people who decide they must hold a conversation inside the store blocking a narrow aisle with their trolleys, or holding their trolleys across in front of shelves, make you hit boiling point; and how insufferably rude you find people walking three abreast on the pavement expecting you to find a way round them, not least if their mobile phones is all they are paying attention to.

So, in short, you need to get a list of the points on which they assess you, listen carefully to the questions they put to you and decide which point(s) they are trying to assess and only give them a reply that relates to the worst case. If they ask for a more general case, make it clear the worst case is the most relevant.

gypsy49 profile image
gypsy49 in reply to ironbrain

I got 2 points for hearing loss i rely on lip reading and the assessor said i had good eye contact lol i need to look people in the face to hear whats being said , i sent in my sleep diary along with ton of notes non of it been read i feel , when you've been assessed you get a short version of the report with the assessors name on most of it was lies so i asked for an MR they failed me and then i got a full report of what the assessor said only this one had a compleat different name on it i've never seen nor heard of it's been investergated ? excuse my spelling , i don't drive nor do i use public transport yet they said i plan a route and go places i won't go anywhere alone to places i've never been to and deffo don't plan route no need to as i don't drive, i live out in the sticks yet they said i walk alone to visit friends and family they live 8 miles away, my RLS is 24/7 how it works for me is the less sleep i have the more energy i have mates said i run on auto pilot and pure aderenilin ? i burn out every 4 or 5th day i can go without sleep for 3 nights solid have been known to go 4 to 5 nights without sleep that's when i feel i lose myself hard one to explain , the assessor asked why i won't have back operation i said because of RLS she said it'd be a tiny nick and i'd be up and about next day back specialist said i wouldn't be allowed home till i can do things (whhatever that means) in the report it said i could touch my toes,squeeze her hand and put my hand up my back she didn't ask me to touch my toes not squeeze her hand and as for putting my hand up my back i've never been able to do this , she asked me if i went to physio i asked what for she said for RLS of course i asked her if she knew what RLS was her reply was yes of course because i suffer with RLS i said then therefore you know its not a muscle problem but a neurological one she got snappy then, no ones read my sleep diary nor the pain RLS causes not just in lack of sleep and discomfort but mentally too . I hear you when your out getting your shopping and you've had no sleep you just want get on and get done and home but folk standing in your way yepping on mobile phone thingies (no i don't own one) i too feel at boiling point and steam brewing or when tired feel like everyone wants a piece of you my attention span is zero when im on zoon planet . I've had RLS since i was about 8 yrs old could be earlier but i can't go back further im 55 now and its wayyyyyyyyy worst bad enough back then when i use to beat the hell out my legs and arms . I gave them my worst days on everything but seems i have really sunny days every day :/ in their books

ironbrain profile image
ironbrain in reply to gypsy49

Well, if you need good eye contact to understand anything, then you need communication support to be able to express or understand basic verbal information, 8 points, I would have thought. I mean, if verbal communication is to include telephone conversations ...

Going without sleep as you do, doesn't sound at all healthy, but from the assessment point of view, we need to know what you can and can't do at various times and how critical those times are, and whether PIP is the solution. For example, if you might need to read information carefully or communicate with people carefully when your RLS is bad, then I think you should maybe pick up some points there. Walking about as you do or thumping your leg muscles, isn't really a very satisfactory solution.

Does nothing at all control your RLS?

[I have to go to the eye hospital this afternoon and if I need an injection in my eye, it may be a day or so before I can respond here.]

gypsy49 profile image
gypsy49 in reply to ironbrain

only understand real close people on phone family mainly don't understand anyone from different area i gave up with phones after it being put down on me when i ask to many times for them to repeat and they get annoyed with me always ends up in tears so aye i have a fear of phones even after i tell folk im hearing impaired i have about 10% hearing only hear 4 letters in alphabet otherwise all letter sound same. how i cope with my RLS i've no idea im often asked how guess i get by just.... nope nothing works for my RLS apart from what the assessor said lol washing my hair works wonders..... hmmm i wish ppfft daft woman oh and physio according to the one i actually saw turns out she has RLS too and she ask me f if i went to physio huh-huh yeah right.. . Good luck with your eye injections ouchy! sounds painful and thank you :) no worries i get you don't think i could type owt after i've had a needle in me eye either . x

gypsy49 profile image
gypsy49

up date i've been in touch with every advocacy services in Lincolnshire and non does this area even if i went to see them in their area they said no been in touch with wellbeing too although they help fill forms in they don't do appeals ppfftt! , just thought i'd let folk know didn't want anyone thinking i haven't took in what help folk have tried to do , Many thanks :) much appreciated xx

in reply to gypsy49

Does that include CAB aswell... ?

gypsy49 profile image
gypsy49 in reply to

no not tried them it's off putting dont trust them for anything that regards DWO when they get paid by them now days , it's now called CA they took the B off for some reason. can't understand why welbeing won't help specially when they helped fill in the forms seems odd .

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