Hi guys, hope you are all as well as can be. I got the letter that i have been dreading in the post today. The one that says you can’t get IB anymore, and have to transfered onto ESA. I am beyond terrified. Scared they will force me to work when i am not well enough. Scared that i am going to end up homeless and starving. I know their assessments are designed to make everyone appear fit for work, even though they are not. What questions will they ask me? What will they do to me? what if they don’t believe me? how can i prove how much pain i am in and how bad my fatigue is? how can i prove that i’m incontinent? What if i can’t get to the assesssment place? So very frightened and stressed. plese help, love Bex xxx
I know hun…I am in the middle of filling my form in too.
I am 60, knackered, incontinent and have bowel problems…who the chuff would want to sit next to me in an office or shop!
Just get help to fill your forms in and be honest…you have nothing to hide.
I doubt they will throw us out onto the streets!
Hi Bex First of all try not to worry as this wont help your symptoms, I know its easier said than done. Have you recieved the ESA50 to fill in yet? If you havent it will probably be around 6 weeks before you do, might I suggest a few things first of all get eiither your neuro, gp, OT, physio to write a letter of support (the more evidence you get the better). Join benefits & work 20% discount off the yearly subscription at the moment so £15.95 I think instead of £20. Can you get to a CAB office? They are really good at filling these forms in, you might not necessarly be assesed medically they may give you a decision on whats been put on the form. It stinks that they are putting us through this, they want to try living in our shoes they’d soon want to give them back. Thinking of you Sue x
Hi Sue, just wanna say that I got the intial letter, then the phonecall 4 days later, then the actual esa form about 5 days later.
first of all,try to calm down,i know quite a few with ms,that have been put straight into the support group,i think the main thing we have to do is send as much info as possible and letters from medical people,like your neuro or ms nurse,i have joined the benefits and works website,they have all the info you need,to help you.i am not going to stress myself over it,i refuse to.
Hi Poll Wow your was quick, just looked at mine and from getting the initiall letter informing me of change from IB to ESA to then getting the form to fill in it was 5 1/2 weeks wonder if each district is different? All be it I’m like you and in West Yorks too (confused) however it still stinks regardless. Sue x
I haven’t got the form yet, only a letter saying they are going to phone me and then send me a form. will i get my IB while i am waiting, or will they just stop my money until they have made a decision? i can’t get a letter from my doctor, cos they charge £50 to write a letter. Also, i have no medical support from anyone, only the company that delivers my catheters. i have been left totally on my own. This is what worries me, what if they don’t believe me? Will join the benefits and work website. All this is just to much to cope with, i’m so stressed and anxious. My headaches are getting worse. Can’t get to a CAB office cos can’t walk more than 50 metres cos of the pain and fatigue. Can’t have a wheelchair cos there is no one to push me and don’t have the strength in my arms to self propel. Am not allowed an electric wheelchair cos my visual impairment xxx
Hi Bex just tell it like it is, warts and all. I found this quite a hard thing to face up to because writing it all down made me think too much about how this bl**dy awful disease has affected my life but in the end I just treated the form (book!!) as a challenge to be beaten. I know it’s hard talking about the embarassing bits but don’t hold back. When you send it back you must enclose copies of reports from your neuro, gp, physio, ms nurse etc, the more info you bombard them with the better. I find wring quite difficult now as my fingers get stiff holding a pen which makes my writing almost illegible after a while and this upsets me greatly because I always had beautiful hand writing so I overcame this by completing the ESA form online here http://www.dwp.gov.uk/docs/esa1.pdf which was fantastic as you can fill it in in short bursts and go back to it to make amndments if necessary. You will then have to save it to your computer and print it off to sign and send off with all your reports. Good luck Bex and don’t stress too much as that will only make you feel more ill. Sx
Bex When they phone you it will be just to confirm you have recieved & understood the letter they have sent you telling you of the changes. From what I can remember they just ask you that and to conirm you are who you say you are eg DOB & your name. Get as much support as you can, its a very stresfull time for us all & something we dont need on top of trying to live with MS xx
That’s the thing though, I don’t have ANY reports to send them. I never got sent any. They only thing i have is a card that says i’m registered as visually impaired and my repeat perscription list. The neuro discharged me cos he said there is nothing he can do and there is no point in him seeing me anymore. Have never had an MS nurse, as i was told you only have one of you are RRMS and i’m SPMS. I didn’t even get a report from the rehab physio. I’m so worried that they won’t believe me. I have had to re apply for my DLA as well, and i’m so worried about all this xxx
Bex, when you get the phonecall, tell them that you cant get out to their office, should they wish to interview you.
They may say they dont need to see you, or they may come to your house.
When I got my call, I said i am incontinent and cant be kept waiting long. I also said I need an accessible loo which has room for 2 carers.
Me yet again.
Something that varies from area to area.
When I got my form, I rang my GP and neuro`s secretary to ask for reports to help my claim.
Both of them said it was up to DWP to ask for reports, not me.
Yet, I know of people who have got their own medical reports.
Also when I got my phonecall, I mentioned that and I was told they wouldnt be asking for medical reports.
No wonder WE get muddled when it is THEY who are muddling us up, eh?
I do have several letters re my appointments and tests. I will be sending copies in. I was told by DWP that copies are acceptable.
Google esa50 this gives a comprehensive guide to filling in the form i used it and it helped me a lot. also on that page there is lots of charities that give guidance, hope this helps, dont stress to much good luck barbara.xx
Hi Bex, Did you see post from Jane… ‘Wendels’? (Support Group - No medical - no medical evidence)
She got in support group (that’s when you don’t have to look for work) without medical or medical documents.
Benefits and Work have got 20% discount till tomorrow midnight (Thursday midnight)… see my post about it.
Jane used their guide and I advise you to do the same. I know it’s a lot when you’re broke hon but it’s very worth it. You will also be able to see the scoring system and how they award points for things like incontinence.
Do not panic Bex. By filling in the form correctly, and adding additional pages as Jane did, you will get into the support group.
Thinking of you hon. Horrid scary stuff!!! I haven’t had mine yet and dread it coming… but I have noticed that more people with MS seem to be getting into the support group on application and sometimes without medical.
Bex I’ve just done mine last month, I got my local disability forum to help me, I’m,sure if you google them in your area they may make home visits. Your IB does not stop whilst your waiting on a decision, so don’t worry I’m sure you will be fine,
Bex Make sure you keep copies of everything you send x
Definitely…keep copies of anything you fill in because they come in handy for other forms and before long you have all your answers in front of you which saves a lot of brain effort !! Xx
Hi becks,just a bit of reassurance for you.
I never put any reports from doctors in with my form and I was place
Straight into the support group for ESA.i have no idea if they wrote to doctors or not
Good luck John
I have advised people about filling in the ESA forms many times but now I have had some success on my own behalf – as Pat has already mentioned.
The person who knows your condition best is you. If you read the benefits and work guide and take it slowly you will be able to do a bang up job by yourself, without outside help. I literally did one question a day. It is hard to answer off the top of your head so I had a go at the things they were asking about and made notes. For example there is one about lifting things – 1 litre cartons, big light packages etc. I had a go and then I could answer with some details about how I could (or couldn’t) do the activity in question.
They give you 28 days to do the form and some of the questions will be “no problem” so you have plenty of time to craft your answers. I used the online pdf that you can type onto but I also used lots of extra sheets because 1 or 2 sentences simply couldn’t tell it like it is. I spent a lot of time on the “about your illness” section because this is your opportunity to mention things that are not covered by the questions. For example fatigue – the descriptors don’t really give you much chance to describe how fatigue affects you. It is for me, I think, my number one problem so I went into some detail about it – describing how I need to sleep every 4 hours or so and how I am often too tired to get food even when I am hungry.
Please don’t chase down the homeless and starving route. This will not happen. You will fill in the form successfully. Your post here was impassioned and well written – there is no reason on earth that you cannot do this.
Thank you all so much for all your advice. I will take it all on board and tell it like it is and hope for the best. It is re assuring to know that some of you got in the support group without having to have a medical. i hope i won’t have to. Will try not to worry, although it is MUCH easier said than done xxx