Newbie to site needing help on how to... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,412 members66,464 posts

Newbie to site needing help on how to get into support group

b19htr profile image
11 Replies

Hi I'm new to the site but not new to fibro, I was diagnosed about 8yrs ago but like most people looking back I've had for much longer. Until all of the changes I was, like most people, on incapacity benefit. August last year, after a medical, I was put into wrag and told I would only get my money until september this yr. I appealled and subsequently went to a tribunal which unfortunately I did not win even though they agree that I am not fit to work! I have now lost my money and because my husband works I am not entitled to any help at all. After speaking to benefits help line they have told me I can write to them explaining my condition is now worse than it was 12 months ago, but I am struggling to know how to do this. I've read letters I have sent in the past and don't know how to make it sound any worse than it I already have.They've said I need medical evidence off my gp to back this up but as my very good gp left over a year ago I'm finding this v difficult. As they are still paying my national insurance credits I will still need to go for medicals and they've said I will probably need to go when I send them a letter. Can anybody please give me some advice.

Thankyou

Written by
b19htr profile image
b19htr
To view profiles and participate in discussions please or .
11 Replies
hamble99b profile image
hamble99b

welcome to the site, have you got the benefit & work guides from admin? email emma@fibroaction.org and ask for the esa guides.

b19htr profile image
b19htr in reply to hamble99b

Thank you I have a 'too ill to work' leaflet off my local welfare rights office, but I will def email admin thank you again.

Fibrofoggiest profile image
Fibrofoggiest

Hi there and welcome :-) you have been through the mill haven't you ! I always suggest to people that they get in touch with their local CAB who are really geared up to knowing exactly how to phrase things to get the best results. There is another organisation DIAL, but that doesn't cover all areas! but it is worth looking up in your phone book to see if there might be one near you. Failing that I would write to your MP and explain your situation to him/her. I've known a couple of people who have gone down this route as a last ditch attempt and both of them then got transferred to the support group with no further problems. I think even some of the government realise what a muck up ATOS are making of the situation.

Good luck though, and do let us know how you get on, sending positive vibes your way. :-)

Foggy x

b19htr profile image
b19htr in reply to Fibrofoggiest

Hi thank you, the last 12 months have been an absolute nightmare! lol. My local CAB told me to ring welfare rights which I did, the mistake, I realise now, I made was not contacting them soon enough! I will def look into DIAL though thank you. I'm hoping to go on Saturday to a drop in run by the local MP, the only problem is it starts at 9.15am and this is not my best time, getting up in time is going to be a challenge. I am determined to get there though especially after reading your post.

Thank you I will let you know how I get on.

x

this is exactly the situation i am in to a tee. I wrote and they sent a new form to fill in saying medical evidence was too old and i will need an ATOS medical so awaiting them to send an appointment for it. It has now been 4 months since tribunal and the end of my 365 days and i am very down and i am very depressed i do not know how to cope with each hour let alone each day.

b19htr profile image
b19htr

I'm sorry to hear your in the same situation as myself, its disgusting how people are being treated its bad enough being ill without all the hassle that seems to go with it these days. Have you been told that your unfit for work too? I don't understand how they can say your unfit to work but don't offer any financial help! I'm not a scrounger but feel like I'm being treated like one. I know exactly how you feel I've been getting very down lately when I mentioned this to my gp he just wanted to up my antidepressants! This is our first month without my money and we are struggling! I am dreading next month!

Have you spoken to your local mp? I rang the local office Friday to make appointment they asked what it was about, told them and they are ringing me back. I know its hard but do try and stay positive, i.'m v lucky because I have v good friends who keep me going.

Take care. X

bodger profile image
bodger

o dear i can not believe how many of us are in the same boat, my situation is exactly the same as yours, i also have been to my mp, would you let me know how you go on, and my doc just wants to give me anti depressants to, do you have any other illnesses? and how many pionts did you get, my appeal was shocking, biggest regret was i took no one with me, xxxxxps hope it gets sorted for you. xxx

b19htr profile image
b19htr in reply to bodger

Hi, sorry to hear your going through the same as me at the moment. I had spinal surgery for scoliosis at the age of 16 which now gives me a lot of problems, saying that i wouldn't be here now if i hadn't had it done! I saw my MP at the beginning of November and explained my situation to him he said he would look into it. I've since received a letter saying he has written to the Minister. I think I got 15 points. When I look back to my appeal I can see were I went wrong, the biggest mistake was i hadn't done any research before hand ie joining a 'fibroaction'. I hope everything works out for you, I will post an update when I hear from MP. Good luck. XXX

b19htr profile image
b19htr

Hi everyone,well i've finally heard from my MP but as he puts it it is not encouraging, he explains why my ESA has stopped, which i already new, but explains why i still get the credits paid. Basically after one year ESA becomes means tested and as my husband works I do not qualify any more however, as they agree I am unfit for work they still pay the credits! He suggests if my condition worsens I can reapply for ESA, so as my original claim was over a year ago I will contact them and ask if I can re apply. I really wanted his help to get into the support group, but I'm not sure how clear I made this to him(fibro fog hits) and I'm not sure if I should contact him again explaining this or go down the re applying road. suggestions more than welcome. lol. XXX

in reply to b19htr

Hi there

I'm sorry you're going through this benefit saga it very time consuming isn't it. From what I understand they look at your claim from when you first applied so if that was a year ago and your health is a lot worse, I mean there's an obvious difference then re-applying would be a better option.

Maybe taking someone with you to see the GP to get a statement of your updated state of health would be useful too. How long ago did you approach Welfare Rights because you can still get back in touch for advice about whether to wait it out or re-apply. I only suggest that because I'm not professional advisor on the subject and I may be wrong ! :o wouldn't want that to be the case :)

I found it easier to approach these advocacy services on-line because then I can take my timeover writing the e-mail and make sure I write what I NEED to write and less of a chance to forget things. It also means they already have the picture before they talk to you :)

Good luck and regards

:) xxxzebxxx :)

sorry I forgot to mention that you must make note of any medication changes whether you take a new one or dosages have changed all these little things count ;)

b19htr profile image
b19htr

Hi

Thank you for your advice, I decided to ring this morn, but I didn't feel I got anywhere really. I was hoping I would be able to just complete a new assessment form but no I've to send a letter explaining how my condition as worsened with medical proof from my gp! This is were I struggle as my current gp is convinced that DWP will contact him if needed but DWP told me today i have got to provide the evidence because they are so busy, I wonder why!!, they do not write to gp. I feel I am just going round in circles at the minute with it! I think I will have to go back to see my gp!

Thanks again. Xxx

You may also like...

how do you get the help you need?

Hi am new here so hi to all. was told i had fibro about two and a half weeks ago.im also dyslexic...

help been turned down on appeal to get into support group

nothing has changed since my medical back into 2011 even thou sent letter from docs and ive just...

Newbie who needs help :)

come off them! announced that a couple of years ago I would probably had been referred to a piain...

other helpful web sites for everyone needing support and advice when applying for ESA/PIP

i have been using and it is a free site run by people who have been through the assessments and give

hiya i am a newbie to the site =D

it down to fibro this time and i have since been told after havin a camera into my stomach that i...