hi all! I need advice with my benefits - Fibromyalgia Acti...

Fibromyalgia Action UK

59,344 members66,389 posts

hi all! I need advice with my benefits

becka12 profile image
53 Replies

Hi im on ESA and got a tribunal next week and no one is willing to help me...

I suffer with fibromyalgia and on gabapentin 300mg, three-three times a day.

does anybody know were I can go for help as the funding has been taken out of CAB and solicitors and been told to fight it on my own but im scared incase I mess it up

thanks

becka

Written by
becka12 profile image
becka12
To view profiles and participate in discussions please or .
Read more about...
53 Replies
Mdaisy profile image
Mdaisy

Hello Becka,

I understand that you are feeling anxious.I wish that the benefit system was not so complicated and also that is was able to understand fluctuating conditions.

I am aware of the changes since 1st April where legal aid is no longer available for a range of situations including an appeal against a benefit decision and I personally feel this is very unfair.

All I can suggest you may wish to take advice from the Benefits & Work ESA appeals guide that you can have sent to you for free if you email: info@fibroaction.org.

I believe within this guide is a sample letter of all the recommended documentation that you wish to be considered in your tribunal. I wonder if anyone else may provide some more advice for you, I do hope others on the forum will be able to advise you further

All the best

Emma

becka12 profile image
becka12 in reply to Mdaisy

Hi,

Thanks I will email them, its just annoying really because there is just no help for people like us who suffer

thanks again

becka

Royalspec01 profile image
Royalspec01

Hi there me too in the same boat as you recently diagnosed with this condition and heading for the tribunals with nothing I've been refused a letter from my doctor and its not their thing but know just how you feel. I had some good advice and Citizen's advice can offer a good form of advice, advocacy and also help you represent yourself in the best possible way.

a fibro friend Liz

becka12 profile image
becka12 in reply to Royalspec01

Hi,

ive been to the CAB today and they told me to fight it alone as they have no funding and sent me away, this is frustrating because they don't understand the pressure it puts on you.

thanks

becka

Mdaisy profile image
Mdaisy

Please also see our website that has information about organisations you may wish to contact for further advice

fibroaction.org/Pages/Benef...

Emma

becka12 profile image
becka12 in reply to Mdaisy

Hi,

thank you very much I will have a look :)

thanks

becka

hamble99b profile image
hamble99b

I used the benefits and work guides that Mdaisy recommends. they are very good.

make copies of everything that you send.

good luck and keep in touch.

sandra.

becka12 profile image
becka12 in reply to hamble99b

ive copied everything what myself and they have sent

thanks very much

becka.

Lifeback profile image
Lifeback

Hi becka12 I went through the same thing took a year for me to get to tribunal people were really nice made me feel very comfortable.Have you had a letter from the tribunal people? The reason i am asking is that you have to send eveything off to them ie docters letters,consultants letters appointment letters before you go to appointment because they will not look at anything on the day and has to be in a week before the appointment so they have time to read all the information.let me know. x

becka12 profile image
becka12 in reply to Lifeback

yes ive had all that but ive been asking for help for months and no one is prepared to help

thanks x

gardaqueen profile image
gardaqueen

Hi Becka12. I recently had to go through an appeal for DLA. I got my info from Benefits and Work as was suggested in the first answer to your post. It gives you clear information on what to expect and how to answer the questions put to you.

Fortunately I won the appeal and I KNOW it was only because of the info I got from there.

Get the downloads and read and re-read it until it is clear in your head, and make sure you've got all your supporting evidence from doctor etc.

I wish you well with it. I understand you get a decision straight away at tribunal, so please let us all know how you get on.

x Gentle Hugs

becka12 profile image
becka12 in reply to gardaqueen

were do i get this information from, it will be very helpful for me.

ive got all my information in the same envelope for it and highlighted things that have changed since i applied for it.

thanks

becka x

gardaqueen profile image
gardaqueen in reply to becka12

Hi

There is a website called Benefits and work.

I subscribed to it (I think it is £20.00 for the year).

It was well worth the money if you can afford to do it as you get a members forum as well as all the necessary guides for appeals etc.

Hope this helps. Let me know if you are still finding difficulty in locating it.

becka12 profile image
becka12 in reply to gardaqueen

thanks very much ill look for it and see what I can find :), thank you so much

juicyluci profile image
juicyluci

Hi, try gettting in touch with welfare rights get number out of phone boolk, also e-mail your local mp or councillorasking if they will help you, or give you info on someone who can? I did thid and got help also on computer type in asking if any organizatios can helpyou. Hope this helps.

becka12 profile image
becka12 in reply to juicyluci

ill look for a number for them and see if they will help me in any way even if its just advice.

thanks

gilly25 profile image
gilly25

Ask your doctor for a letter of support, and you can download information from fibrolite about your illness and take that with you as I did the same and I won my appeal. Good luck and think positive. You can win

66Amanda66 profile image
66Amanda66 in reply to gilly25

Hi gillyprice, i have searched for Fibrolite but cant find anything, i just get info on a rock called Fibrolite, do you have a web address etc, many thanks, amanda

becka12 profile image
becka12 in reply to gilly25

ive been to my doctors for one today and they sais they couldn't help me unless the tribunal service wrote to them :(, ill have a look thanks so much for your help and advice

bbstport profile image
bbstport

is your appeal for esa or dla ? if esa are you in WRg OR SUPPORT ?

Belinda

becka12 profile image
becka12 in reply to bbstport

im on ESA and im not too sure to be honest, i didnt know there is different types of ESA.

becka

bbstport profile image
bbstport in reply to becka12

how i understand it there are 2 groups and 1 group only allows you to claim for 365 days and the other group is longer - what is it u need to appeal with them ?

becka12 profile image
becka12 in reply to bbstport

Ive been on it for over a year i think, i didnt know there was different groups haha, thanks though for your help and advice x

these people have an office they run from the shop they will give you all advice you need for free and go to tribunal with you click on link there should be an address if its to far from you they might be able to tell you of another free organisation that will help newforestdis.org.uk/

becka12 profile image
becka12 in reply to

thank you ill have a look on it now and see if they will help :)

thanks

Sharolina profile image
Sharolina

Hi Becka,

I know the idea of a tribunal is a scary thing, but believe me, it is best not to worry about it, because it is not people from the DWP who sit before you. As it is next week, you might not really get the help you are looking for, as a lot of these companies need time to go through your case with you.

What I suggest, is that you go through all the paperwork that they have sent you, and make sure that it includes all correspondence or information that you have sent to them. Compare what you have put on your application against their report and highlight any errors or omissions. If there is anything that is missing or totally inaccurate, it is worthwhile noting it down, and sending it on to the tribunal with a covering letter, explaining why, they will take this in to account.

If by your general state i.e physical, mental and emotional wellbeing, it is obvious that you are having problems, they will take that into account. Any aids that you have - use them, if social services have provided you will equipment at home, take photographs as evidence and send that in as well, if you have not done so already.

I totally understand your anxiety and concern about this, but it is worth remembering that this is an opportunity to present yourself as you are; a state that decision makers never see! So be yourself, put your normal face on, not a brave one. The websites, that have already been posted are very good, so it is worthwhile taking a good look through them.

Finally, even if you have no official representation, take some one with you, a friend or family member. Take anyone who has seen you go downhill with this illness, and is aware of the impact it has had on you, the changes they have seen or things you can no longer do. They may be asked questions, but more importantly, it is moral support for you.

This is your chance to be heard and seen, by people that can make a difference, so just be yourself.

I hope all goes well for you, and please let us know how you get on.

Sharolina

becka12 profile image
becka12 in reply to Sharolina

thank you so much sharolina, they have my medical report and a list of my medication of my doctor but they don't actually know how much it affects me, ive become stressed the past weeks over it and its just getting me down worrying, im glad in a way that ill be there so they can see the struggle and pain I have to go through every day, thanks so much for your help and advice

becka

Sharolina profile image
Sharolina in reply to becka12

You are welcome.

secretldy profile image
secretldy

Hi

Have you got a family member that looks after you? when i went to my tribunal last year i took my daughter and my son, i also hab a letter from my rheumy. no one can tell it better then a family member.

becka12 profile image
becka12 in reply to secretldy

yeah I have someone coming with me but im just nervous incase I misunderstand a question and mess it up, but im also glad because they can see whati go through day in and day out rather than judge me over an application form.

thanks

secretldy profile image
secretldy in reply to becka12

don't worry about not understanding. if you don't understand then ask them again or get the person going with you to explain. i also didn't take my meds on the day, so i didn't look or feel my best either

becka12 profile image
becka12 in reply to secretldy

I will thanks :), that's what ive been thinking of doing and recently I have need walking aids as my legs, ankles and feet have started to swell after walking any were :( its so painful I try to just keep sitting down

secretldy profile image
secretldy in reply to becka12

that is how mine have gone, i have to use a mobility scooter or a wheelchair now

becka12 profile image
becka12 in reply to secretldy

its a nightmare because I get frustrated at myself all the time and I know I cant stop it

gilly25 profile image
gilly25

Hi hunny it's called fibromites united and you can find it on FB or google it hun x

becka12 profile image
becka12 in reply to gilly25

Hi, thanks so much ill that up i need all the help i can get its too stressful which isnt helping if im honest :-(,

Thanks hun x

gilly25 profile image
gilly25 in reply to becka12

Oh bless ya Hun you will be ok. It took mine 1 year b4 it went to appeal was stressful and made my illness worse but I did win with all the help I had. Good luck will be thinking of you x

becka12 profile image
becka12 in reply to gilly25

its been a few months for it to go to tribunal and since I got letter ive been more worried about it an its affecting my sleep which isn't helping the pain so its an on going thing all over again :(

thanks x

karen1965 profile image
karen1965

Hiya Becka12 this is not a nice place to be at the moment have you presented them with a list of up todate medications and a list of side effects which you will find on your medication box as they will not no all side effects of every medicine/tablet on the market i hope this little thing helps. Gentle hugs and good luck x

becka12 profile image
becka12 in reply to karen1965

No i didnt know i had to just filled a gl24 form in and they took me to tribunal, i have got alot worse since i appealed and got a list here but wasnt sure i had to send that to them. Thanks so much for your help x

karen1965 profile image
karen1965 in reply to becka12

Hi Becka12. I Did this list off my own back as so many different types of medication have different side effects but any you take which might cause drowsiness or state not to operate machinery or drive then i think this might help along way so take along a list of current medicines gentle hugs and good luck x

becka12 profile image
becka12 in reply to karen1965

I will thanks for your help, the tablets im on are 900mg gabapentin 3 times a day and its a nightmare because I just fall asleep and the pain only eases for an hour but the hospital don't want to higher them as im only young so have to get on with the agony each day

thank you x

louie88 profile image
louie88

Hi Becka,

I was in the same position as yourself. No help from CAB,doctor refused me a letter to take with me. In the end I went to tribunal on my own,just told them how it affected me,and luckily I won the appeal. Just a word of advice, if you failed an atos medical & it was months ago,you can only relate to your state of health at that time,not present day. Good Luck. Hope it all works out for you

becka12 profile image
becka12 in reply to louie88

my medical was nearly a year ago and I was bad but now im a lot worse, its just stressful with no help from anyone, what kind of questions do they ask you?

thanks

gardaqueen profile image
gardaqueen

Hi Becka

Did you find the Benefits and Work site?.

Let me know. If not I'll try and email you some of the info from there.

x

Heather

becka12 profile image
becka12 in reply to gardaqueen

no i couldnt find it, if you could that would be great thanks

becka x

gardaqueen profile image
gardaqueen in reply to becka12

Hi

Private message me your email address and I'll send some info in the morning.

Sorry haven't looked earlier today - been a rough day.

x

tessintrouble profile image
tessintrouble

I have RA (rheumatoid arthritis) and am also waiting for my appeal to be heard as I failed the medical on "points". One of the things which went against me was the fact I had to use public transport to the centre. Please check out the benefits and work site as they tell you all these things that are like "traps" for the unwary: benefitsandwork.co.uk

Good luck becka - thinking of you!!

becka12 profile image
becka12 in reply to tessintrouble

i got told to begin with i have rheumatism in my hands but now they are saying ive not got it :/, i went with my friend and they said coz i was able to go their with her im fine and they i couldnt to some of the tests and theyv said i refused to do it and didnt explain to them why i wouldnt do it. ATOS are the worst ever they have no understanding of what we have to go through every day

thanks so much

Hi Becca

direct.gov.uk/prod_consum_d...

If you copy and paste this link it will take you to a guide about the scoring for thr ESA assessments

You may get help from DIAL in the UK -search for your local DIAL

To challenge an assessment you must appeal within a month-it sounds as if you feel you should be in the support group rather than the work related activity group.

Use the guide to describe your own capability clearly in a way that fits into the assessment framework.repeat any details you have given before and send copies of letters from doctors etc. If you ask for any independent medical reports from your own GP or others there may be fees so check this out.

If you are over a month since your decision and passed the appeal date you can request a late appeal and give reasons for why it is late.

Hope this helps

Gigi

blue04 profile image
blue04

hi becka i got taken off esa after 365days january this year i had 2 appeal to get into support group i was lucky my dr did give me a letter i asked esa for my esa report i went to see mps caseworker they said woujd e-mail the esa then i wrote 2 prime minister inc esa report drs letter and a letter i wrote also went 2 cab they said it is very hard 2 win with fibro i got reply off esa 4weeks later amin support group till may 2014 dont give up good luck x blue04

becka12 profile image
becka12

I dint know what group im in to be honest only found out last week there was different ones, the cab said they couldn't help me due to funding and had to fight it on my own which is scary as ive never done nothing like this before

thanks :) x

jayjayboy profile image
jayjayboy

Hi, I am also on Gabapentin 300 mg in the morning 300mg in the afternoon and 400 at night without this I cannot sleep for the pain I am in. But I fall asleep a few hours after taking it, so need to sleep for a few hours each time I take it. At night it knocks me out for hours. So remember to tell them this at the appeal as it has a huge affect on your daily life,I would need to get time of to sleep. I also have massive problems with my bowels so need to be only 1 minute from a toilet or I dont make it. I am in the process of appealing as well, to be transferred from WRAG TO SUPPORT group, but as yet I have not been advised if this is going to happen, so I may have to go through the same process as you in the future. I had my first WRAG interview at the jobcentre last week and the lady I saw was very helpful and understanding, she has put down that I am not fit at all to be introduced to work just now. And also that I need to be near a toilet at all times, she noted this on my file. As the jobcentre does not have a toilet for public use, but she said as she has noted this, I would be allowed to use there staff toilet. Also she gave me a card that states I need some-one to accompany me if I am called back again so I dont need to explain at the front desk (just need to show them the card). I got very good information from the benefit and work site, so it would help you to have a look at that. Also if you have a welfare rights officer at your local council they are very helpful at helping and give advice on appeals. They also accompany you to the appeal. Good luck

You may also like...

hi everyone, i need some advice

hi all, ive been in so much pain an recently been referred to he hospital and had my tablets higherd

Advice needed please! How to use the Benefits and Work guides?

moment! My ESA form needs to be in by 15th october I have got the benefits and work guides to help...

Help and advice needed on benefits

anyone else had this. I'm feeling very frightened. Help please. Ty x pint x

Hi all. I have recently got a strange sensation in my hands

with little electric shocks and feel really heavy. Does anyone know if this is fibro related and...

Do you need information or advice regarding benefit reforms, appeals or tribunals?

charity status, to help people of any disability with whatever they may need help with. Currently we