Work programme & benefits advice for... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Work programme & benefits advice for you

SimG profile image
SimG
30 Replies

Hi everyone. Gosh it has been a whole since I've posted anything and I have missed it! So I pushed through my debilitating illness of Fibro and osteoporosis and managed to work for the first time in my life for almost 2 years! I'm still in shock! Unfortunately my health was pulling me back every single day but I still forced my way through. I worked on the work programme alongside the department of work and pensions. I worked for fellow esa customers and gained so much knowledge that I can now share with you.

I've had to quit and am serving my last week here because my health won't let me continue plus the job kept battling against my morals. I've helped a lot of esa customers in this time so I think I have served us all well.

I am at your beck and call now so ask me anything u need help with from pip to work programme referral. If I don't know the answer I will find it out for u!

Missed my Fibro family, hope you are all well xxxxx

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SimG profile image
SimG
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30 Replies
sange profile image
sange

Thank u for being who you are and for this great offer I for one am very grateful for you thank you again the price you paid with your health and time I ask you to rest and get well

SimG profile image
SimG in reply to sange

Thank u for appreciating. U just made a tear come to my eye. I can't thank this community enough for helping me get this far with my health. I love u all so much. I would be insane without u all!

Shadows-walker profile image
Shadows-walker

Hi I will look forward to asking for advise as I need it I started ESA 10 weeks ago my first fit note runs out on the 24 of October I have an appointment with gp for that day a assume that I will have a letter to send next note ,I applied for pip in March had a letter to say I would have an assement in 25 weeks in June I am still waiting ,I have been told here in Powys there's a minimum wait of 18 months for a ESA assement I do wonder if they do this so they can see if we get well so they don't have to pay out so much money ? But all I wish is to have my life back but I have been told at best by pain doctor at beast I can expect to get back to 30% of what I was :( shadow

SimG profile image
SimG in reply to Shadows-walker

Hey. Yeah it takes a long time because there is a huge backlog with atos and the assessments. Don't worry because the longer u wait the less stress u will have from their wrong assessments! As for ur medical cert I would call the number on ur last benefit letter and ask if they require another one because they don't always need them. They only take them for the first 6-8 months sometimes. Send it in in enough time so they don't find an excuse to cut ur benefits completely. U can send them in for 6 months at a time. As for pip it takes forever! It gets back paid but it still takes a long time as it's still a new system. Good luck!

sange profile image
sange in reply to SimG

thanks

SimG profile image
SimG in reply to Shadows-walker

Also u will be 100% u will live with this like it's a part of u and then become stronger than u ever were. We are warriors!

rosewine profile image
rosewine

Thank you so much for the offer but I wish you could still be working and too busy to make the offer. it will be good to have someone who has current knowledge of the system and all its ins and outs.x

SimG profile image
SimG in reply to rosewine

Ah thank u. So do I. I feel really broken inside right now but I couldn't stay there and have to listen to the horrific things the assessments were doing to people. I wish I had enough money to buy out atos and do it all myself! Xxx

sange profile image
sange in reply to rosewine

agreed glad to have you here ;sorry it took leaving your job to have it

thanks for wanting to help others

Sorry to hear you cannot continue in your job. Iam waiting to see if I can go back to work but its looking increasingly unlikely due to health problems increasing. Thank you for your generosity and hope you feel better soon. Gentle hugs Joolz.x

SimG profile image
SimG in reply to

Hi joolz. Thank u for ur reply. I know it's horrible but I will only let it win for little time spurts. When I feel rested I will go and fight again even if I only last a day. We can't let Fibro own us. Do work from home by buying and selling things to keep ur self busy and in a work mode.

sange profile image
sange in reply to SimG

Do work from home by buying and selling things to keep ur self busy and in a work mode this is a great idea if its allowed perhaps you can suggest some ways never thought of that thanks

SimG profile image
SimG in reply to sange

So if you are claiming esa you are allowed to do permitted work which does not affect ur benefits in any way. The restrictions are u cannot earn more than £101.50 a week and can't work more than 15 hours for 52 weeks. So let's say u do buying and selling online for example starting with selling ur old stuff of eBay etc, you can do this by sticking to those rules. U have to declare it and il tell u how if it's of interest to you. If you do little like only earning £20 here and there then you can do that forever. Let me know if u want ideas in self employment. I can help u set it all up legit and not affect ur finances. I have loads of ideas that work from home. Xxx

sange profile image
sange in reply to SimG

YES can u message me maybe some thing of interest ..thanks

SimG profile image
SimG in reply to sange

Ok send me ur email address

Sarah-Jane profile image
Sarah-Jane in reply to SimG

Currently struggling to stay on at work. Frightened how we will cope when I leave. Don't know best way to do it either. So I do appreciate your struggles and am really sorry you had to leave.

I too would like advice about working from home. I'm a teaching assistant with an English degree. Could I offer tuition? Etc

I'm so scared.

Ozzygirl64 profile image
Ozzygirl64

To be honest I myself am proud of you, well done for what you have achieved. But for me claiming ESA was a total nightmare, I have atherosclerosis, heart failure and COPD, as well as fibro and many other things going on with my health. It went to tribunal and the judge awarded me no points either. So I firmly believe this is down to government targets, only allowing so many through whether they meet the criteria or not....somehow, not sure how, I never met the criteria and was cleared to go out to work! So after I lost the tribunal I was advised to claim carers allowance for my disabled daughter, which I did and our local DWP office interviewed me for Income Support and was disgusted with what had happened to me. So now I am safe from working outside of my home as my health could not take it at the moment. Everything in the benefits system is upside down, in turmoil and people who genuinely need the benefits are losing them yet I have seen people win there health benefits, then run around the shopping centre, doing this, doing that and carrying untold amounts of shopping etc, its just all so wrong. The goverment needs to look again but somehow I cannot see anything changing and the wrong people will still suffer xxxx

SimG profile image
SimG in reply to Ozzygirl64

Oh my goodness that is shocking! No way. Tribunal can't say no to those conditions. Next time u get ur local mp involved and fight it with ur local welfare rights team. U are in ur right for esa! I hated hearing these stories from my customers and found myself being asked to compromise on my morals but I couldn't. That's horrible. Fight with all u can and make a fuss about it as the government hate attention to these matters.

TheAuthor profile image
TheAuthor

I am so sorry to read that you cannot continue in your employment, and I wish you all the best for the future.

All my hopes and dreams for you

Ken x

SimG profile image
SimG in reply to TheAuthor

Hi Ken. Thank you. Well I let it win this time but I will fight it again and do a less demanding job. Hope u are well x

bluebell10 profile image
bluebell10

hi simran, i havn't been on here for ages either so it must be fate that made me come here today lol. i need to ask a question..i had to give up my job 5 yrs ago due to fibro although i was only diagnosed 2 yrs ago. my husband was on i.b & when my ssp ran out he got income support for me. since the change over to esa after a fight he has been placed in the support group but there is nothing to state income support for me. last year i recieved an esa50 form which i sent back then yesterday i got a letter to say i have to go for a face to face assessment even though i don't claim anything except for low care dla which i also had to fight for, do you know why i have to have this assessment & can i ask for someone who knows the affects fibromyalgia has on us to do my assessment? i also have osteoarthritis.i have had to get a wheelchair too as the pain when walking has become too much so do i also tell dla my mobility has got worse yet or wait? see i had to go to tribunal for dla a few months ago & they said i didn't meet the criteria for mobility, i didn't use a wheelchair then, any advice would be much appreciated & i wish you well, thank you & sorry you had to give up your job. xx

SimG profile image
SimG in reply to bluebell10

Hi, hope u are well. Ok so if he is in esa support group u should both be on a joint esa claim where he becomes the head of the claim and should be getting more than the standard amount. I would let dla know the changes immediately even if they ask u to wait for the assessment as they will note it on the system then u have evidence u let them know. The assessment is silly. Either ul be the rare lucky one who they will assess fairly or you will be like the majority who have to appeal against their decision. If u are on esa joint with ur husband you need to find out who the head claimant is as they should be assessed. Does it state until when he is in the esa support group? Depending on what area u live in you should call the benefits line 03456088545 and ask them am I on a joint claim? Who is the head claimant? If they say u are on nothing but dla ask them if the assessment is assessing ur dla. I would make sure I take all medical evidence in the assessment and read between the lines in their questions. For example if they say can u see properly ur answer is no because when I pass out from the pain I cannot see. Does that make sense? Answer all questions in ur pain attack state and they will even say in ur report 'she sat for 15 minutes without complaint' the assessors come across understanding but ur notes go to a decision maker who never even met u so bare that in mind. Good luck! And stay in touch to let me know x

bluebell10 profile image
bluebell10 in reply to SimG

thank you so much for reply, no my husband is the head claimant & he was assessed when incapacity benefit changed to esa. he had to fight for it tho as the assessor said he was fit for work & he clearly is not. i am on his claim.i just want to know why i have to go for an assessement. can i ask for a dr with knowledge of fibromyalgia to assess me & i also want it recorded. if they say i am fit for work what will happen as i cannot go out to work as you know we have days when we can't even get up let alone go out, xx

bluebell10 profile image
bluebell10 in reply to bluebell10

also he was awarded it for 3 years before being assessed again but he will be pension credit age next september x

SimG profile image
SimG in reply to bluebell10

So ur not going in for esa then because normally it is only the head claimant. It may be for ur dla claim instead. U can ask but they won't accommodate to that because they are what they are! As for recorded. I would record it on a device of ur own and say due to my memory issues I record everything and I have every right to and do it. If they don't let u then do it without them knowing. Ur assessment. Ur rights. If they say u are fit for work u are still under ur husbands esa claim. They can't make u go on job seekers while ur husband is still on esa. It's a joint claim. If they decide something u are not happy with u fight and appeal against it. Get in touch with ur local welfare rights to help with the appeal but I pray u don't have to and it works to ur favour. When is the assessment?

bluebell10 profile image
bluebell10 in reply to SimG

thank you it's in 3 weeks time, i was sent a esa50 form last year which i returned to atos. that's what i don't understand. so they can't take me off my husbands claim then? as that's what i was worried about as he had to wait a year for a tribunal hearing which found in his favour. thank you for your advice. i had a dla tribunal hearing in july which i was awarded low care til 2016, if i say i use a wheelchair now they probably won't believe me as i had said that i needed one but couldn't afford one, it was only the fact that my husbands claim was backdated that i could buy one. x

SimG profile image
SimG in reply to bluebell10

No they have to believe it it's whether they take it into account or not. That's really odd. If u have both been awarded already and ur time isn't coming to an end yet they don't normally assess. Call the benefits line and ask them why you have to go to one if ur claim isn't due for renewal. Also call dla and tell them u use a wheelchair most of the time.

bluebell10 profile image
bluebell10 in reply to SimG

thank you simran, il let you know what they say x

bluebell10 profile image
bluebell10

hi simran, i have spoke to dwp & the reason i have an assessment is because im on my husbands claim so im still classed as a claiment. i also foned atos as my appointment was at croydon which has 42 stairs, i told them i cant do that, they asked even if i have someone to help me? i said no there is no way i can do that due to back & leg pai so they have changed my venue to chatham which is ground floor. thank you for your help x

SimG profile image
SimG in reply to bluebell10

Good. Never be afraid to ask for arrangements. It will work in ur favour anyway.

That's odd but it won't affect ur husbands claim and u have joint with him. Just go as I told u. Describe every answer as it is in worst case based. Answer the questions by reading into them deeper and don't be afraid to show ur pain throughout. Don't be disheartened if it doesn't come back as u deserve because we can fight it together so let me know x

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