BENEFITS QUESTIONS, PLEASE HELP...: Hi, Has... - Behçet's UK

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BENEFITS QUESTIONS, PLEASE HELP...

pheobe67 profile image
16 Replies

Hi,

Has anyone been put on the work related programme at the job centre? I had to be assessed by ATOS re my disability claim and they awarded it to me. In fact they said due to the medical evidence submitted by my GP they didn't need to see me they just continued with the benefit. I then get a letter from the job centre saying I need to go for an interview next Monday as I have been placed in a group that encourages people to find work etc etc. If I don't attend I may get a sanction???...So the DWP have said I cannot work due to my condition, yet I get this letter from the job centre saying otherwise. Its ESA instead of income support now I think. I am so so confused and absolutley pulling my hair out with worry that they will force me back into work or lose my benefits.

It goes without saying that I would love not be like this and work to have the independence and money I had before this. But this dam condition is so debilitating it will kill me.

I have ANOTHER chest infection, its the fifth one this year and I am struggling to breathe. I have just been told by my GP that I now have to have a test for COPD. I don't think I can cope with much more of this and now the stress of work...

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pheobe67 profile image
pheobe67
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16 Replies
billi profile image
billi

Hi Phoebe,

This happened to me about 15 years ago, briefly.......I applied, was refused, I appealed was awarded, recieved letter from job centre.....attended told them about my disability claim and that I was more than willing to work if I could find part time hours ( I had young children) and if it was understood that because of the nature of my illness, I may have quite a bit of time off sick and within hours eg. Well in the morning and flare up in the afternoon. They couldn't really argue their case and I didn't hear from them again. Three years later I had to reapply for disability, was refused yet again and I just didn't have the fight I me to appeal so I have never had anything since and did eventually get back into work part time for 4/5years. Hope this helps.

Billi

andreafm profile image
andreafm

Hi Pheobe...it may well be that the contact from ATOS and/or DWP hasn't happened, to tell the Job Centre you are in the support group and don't need to see anyone.

This is what happened to me and so I had to call them both [ATOS and the DWP] and get it sorted.

Have you had written confirmation to say you are in the support group because one department doesn't always speak to the other. I was waiting for weeks and weeks to get written confirmation even though I knew I my claim had been accepted.

Once I telephoned the ESA Department of the DWP and explained it, they contacted ATOS to get the paperwork through to me.

If you have got it in writing you should have details on that letter that to say you do NOT need to attend any work interviews but can get help if you want it. You could make a copy of it and get someone to drop it into your Job Centre, making sure that a receipt is given to say they have received it.

Hope this helps...they drive you mad don't they

Andrea

pheobe67 profile image
pheobe67

Hi andreafm

I recieved a phone call from the DWP and the guy was lovely. He said I don't need to work bu the job centre would get in touch to let me know etc. Then I get a letter from the job centre saying I am in the work group and thats why I have to go there on Monday. I will phone the DWP tomorrow and ask the question to see if I can get it sorted. Thanks so much for your help, I am so worried. My appointment is on Monday so I will try to get it sorted. And yes they do drive you mad...Thanks

Sarah

andreafm profile image
andreafm

Ah I probably am right and the letter to attend the Job Centre was sent out before you have received the confirmation letter of your ESA on the support group.

I hope you get it sorted today....it wasn't a problem once I contacted them so hopefully this will be the same for you.

Good luck

Andrea

jkdee profile image
jkdee

I had exactly the same a few months ago. I had the same letter and telephone call that you have received. I am in the same position as you where I was told by an assessor that I was not able to work indefinitely, then I get the call and then the letter. I rang DWP and they told me I had to attend or I would lose all my benefits if I didn't attend. I went for my 4pm appointment with my husband, it was a struggle to get there. My son said he would drop me off and wait in my mum's house as our Job centre in Cardiff is in the city centre with no parking near. He dropped us off and left waiting for a call to come and get us. Anyway we went in was shown to the advisor waiting at a table for us, she asked my name, address, D.O.B. etc. I then told her that I have been told that I am unable to work from a medical assessor and she said "thats fine" she then advised me to appeal the fact that I have been put in the Work related activity group and appeal to get put into the Support Group. We left the job centre at 4:07pm (my son couldn't believe how quick we were. The important thing here is not to worry, but ring up the DWP and ask them for an appeal form as you are appealing about the Work related group. Fill it in as soon as it arrives as you only have 30 days to appeal from the date of the first letter. I went to my local CAB too this is where I got the advice, although I managed to fill the appeal form in alone giving them all my details of my illness on my worse day. I was a bit late doing this as it was 5 days over the cut off date, but I told them i was really suffering with a bad flare, and was unable to reply within the designated time.The outcome was I won my appeal and do not have to attend the Job centre every three months as first thought. I am now in the Support Group! but please send the appeal form immediately, and make sure you tell them your worse day and also tell them like me that you were assessed previously and told you couldn't work.

I really hope this helps..... sorry it's so long but I need to tell you everything. Good Luck

Jackie

pheobe67 profile image
pheobe67

Hi

Thanks to everyone for their advice and support with this. It really does help. Its an absolute minefield of do this do that and confusion out there. I phoned the DWP this morning and still trying to sort it out. Their system crashed apparently so the woman said she would phone me back but hasn't yet. I will come back and update if I do mange to get an answer or some help from someone. Thanks again to everyone, its comforting to know there are people to talk to...

Sarah...

andreafm profile image
andreafm

Hi Sarah...I do hope nothing has gone wrong with your ESA Claim as it seems clear that the person that called you to say you that you didn't need to see anyone as they had enough information from your G.P. They would have asked to see you before putting you in the work group. You need to emphasise this when you manage to speak to somebody.

You could clarify the information from ATOS Customer Service by phoning 0800 2888 777 and asking them what they have on the computer. Because it is them that have done the assessment and they should have the result on screen. Your file would then have been passed to the DWP to rubber stamp it and this maybe where things have gone wrong.....there are so many claims being assessed that it could just be down to a simple error.

However, If it has gone all wrong you can ask for it to be reassessed [it's called a reconsideration] before going to an appeal. If you do have to do this you should put in writing that you feel a mistake has been made because you were contacted by telephone to say you didn't need to attend etc.

I hope this helps...but as Jackie says, you must deal with it quickly.

Andrea

pheobe67 profile image
pheobe67

Hi andreafm

I spoke to the job centre yesterday to find out if they could clarify anything. I spoke to the guy who I am seeing next week. He confirmed that I HAVE been put on the work activity programme. He was very nice but did say I may want to work towards doing work in the future as it could help my physical and mental well being. I wanted to explode at that point. If it was all that easy I would of seen him instead of my consultant and GP and saved alot of time trying to get a diagnosis. God knows he was helpful but what an insensitive and naive thing to say to someone who like many others has and still does struggle every day to just get through the day. He did say I can appeal to be put in the support group if thats where I think I should be. I was told If I do appeal though I could risk losing it altogether. So I am unsure what to do for the best. He said he isn't here to force me back to work but to explain all the various options available to me etc etc. Nothing is straight forward is it?....

Sarah

andreafm profile image
andreafm in reply to pheobe67

I am so sorry and angry for you and am confused as to the phone-call that you had before regarding not having to see anyone. Did the person you spoke to yesterday explain what might of happened in respect of this as it does seem puzzling.

It still might be worth contacting ACAS just in case the information on the Job Centre's computer is wrong. You might be surprised to know that the ACAS computers and the DWP computers are apparently not linked together !!

Were you on Incapacity Benefit before or is this the first claim you have made?

The other thing is did you actually copy your consultants letters etc and send them in with the form.

What you can do is request the assessment report and results of points [forms GL24 and ESA85] you were given for each question. You are entitled to have them and it will be able show you if they down graded any of your answers that were given on the form.

You must get 15 or more points to qualify for the support group and this is made up of all the answers you gave to the questions. If they downgraded any and you feel it is not right, especially if you have medical evidence to prove it.

This link may help you with either requesting an appeal or a reconsideration

dwpexamination.wordpress.co...

When you receive them you could take them to the Citizens Advice Bureau who can assist you with this and help you come to a decision.

In the meantime if you are too ill to attend the meetings at the Job Centre you would have to get a sick certificate from your G.P to prove this.

Hope some of this helps...but I am still annoyed for you.

Andrea

pheobe67 profile image
pheobe67

andreafm

I have been claiming since 2002. Have had years of not knowing exactly what has been the exact problem but I have gone through hell. I am sure I am not the only one here with a story either.

Initially I was told I had a brain tumor after collapsing and an MRI scan. Brainstem was affected. Lost the ability to work out how to walk, slurred speech, and so on. This went on for months and months. Along side a myriad of other symptoms. Then told it could be MS, Lupus, Brainstem Encephalitis and so on. Also throughout the whole of this a new neurologist told me it was all in my head and I was making it up. After suffering from gastric problems I lost 3 stone in weight in two months. I was a wreck. They put me on new meds, (guinea pig time again) and this time it led to a full blown physcotic breakdown. I tried to kill myself, my family were not safe and I was sectioned. This was due to the medication and I was pulled off it straight away. However by now I was completely broken mentally and still physically. My Neuro decided to pay me a visit on the ward and said basically "I told you so" your mad.

I changed my neuro, quite obviously and my GP found me a guy out of area who mite be worth seeing alongside a rheumatologist. This was after years and years of going round in circles. I went to see the rheumy first and she was lovely. For once I wasn't made to feel a fraud. Various tests were done and she suggested I see the neuro my doctor had suggested as soon as. I went to see him and he had all the scans in front of him from years gone by. He built up a history of my symptoms. He told me I am not mad and that in fact I have Bechet's. He said the neurological involvement was quite extensive and I was lucky that I hadn't died within the first eighteen months of collapsing. So all that said its been a long journey to get here and at the start of all this I was to proud to claim any benefits. I had worked hard all my life and thought it would just go away. I had a battle to get my benefits to begin with and got my MP involved. That soon shifted them and I had no more problems.

Unlike alot of people I don't get so many ulcers. I do get them but not loads. I get skin problems but neurologically its as bad it can get at times, along with gastro intestinal problems, problems with my eyes and so on. I am sure you are aware the symptom list can be never ending.

When I submitted my form to ATOS I enclosed a letter from my GP. It stated due to the severe flares I endure it would be impossible for me to work or gainfully seek any employment. Therefore please ensure I continue to receive my benefits as he feels it is fully needed and justified.

I will be taking this letter to the job centre with me and thrusting it under their nose. I will appeal to get on to the support group as I do feel this is justified. Would I like to work and the answer is yes of course. Who in their right mind would give up the independence and financial gain I once had. The question is "can I work"? No I can't, not any more. And its taken many years to come round to accepting this. I am all for reform when it is aimed at those bleeding the system when there is nothing wrong with them. But there are plenty of us who are genuinlly ill and need help. So don't don't put us all in the same lazy box. I would like to give some of these MP's and ATOS workers a day in my shoes and see how tough it can be.

Anyway, that's my rant over with, I shall now step down off my soap box and prepare to appeal. Lol. When I do die eventually I shall do what Spike Milligan suggested and have written on my grave "I told you I was ill".......

Sarah....

andreafm profile image
andreafm in reply to pheobe67

Gosh Sarah...you sound exactly like me...I also say the Spike Milligan phrase very often ;)

I have neuro-behcets and also very severely and the brainstem injury has even affected my breathing now and so am using a ventilator. Along with a lot of other really difficult symptoms including memory loss and recently forgetting how to use familiar objects [cooker, computer etc] Recently it has been discussed that I may have the progressive type which doesn't respond to medication very well. I have never had a break in my condition and it has got worse and worse over the years.

Went through a similar nightmare in the medical system for over 20years. I also don't really have a lot of ulcers either but plenty of horrible neuro symptoms and extreme muscle weakness.

I recently had to renew my claim from Incapacity to ESA and it was a nightmare as it dragged on for so long and I had to get my MP involved in the end. He faxed them direct and basicly told them to get on with it....which they did and I was awarded the support group.

I do think you are right to challenge this and will be rooting for you.... Do try and get copies of the Consultants reports as this will help even more. I sent in 150 medical reports/test results...that must have kept them busy for a while :D

Take care

Andrea

pheobe67 profile image
pheobe67

So sorry Andrea to hear of the difficulties you are having. I also get breathing difficulties and only last month I was given a ventilator to start using. Your spot on with the memory problems. We try to laugh about it, but it can be very frustrating. I get tremors and I am sure people think I have got an alcohol problem or something along those lines. I take diazepam from time to time it helps to calm the muscle spasms down. The problem is not always being able to see the symptom. By that I mean people can't see how much you hurt or how much your muscles hurt. Drying my hair is a problem. It sounds stupid, but even holding the hair dryer up for any length of time makes my arms ache. My legs gave way once when I was shopping in a supermarket. I could feel my legs were getting weaker and I managed to make it outside the shop. Then I slumped over a bollard and just went down almost in slow motion. I couldn't for the life of me get up. I felt that every ounce of energy was being sucked out of me. The security gaurd came along me kicked me in side, told me to get up and move on. He thought I was drunk!. I couldn't even tell him to go away or anything, I just felt helpless and couldn't even speak. It was embarrassing to say the least. When I have been in a wheelchair people talk to you like your stupid. I often used to get the urge to do a "Little Britain". Get out of the chair, slap them round the face and get back in it. Lol.

I fully understand the neurological problems you are having and a day off from it all would be just wonderful. But like you that rarely happens now so I just try to get on as best I can.

Will let you know how I get on after Mondays appointment at the job centre.

Take care

Sarah...

andreafm profile image
andreafm in reply to pheobe67

Hi sarah...yes this all sounds familiar and I am not very happy in the wheelchair either.

I try and keep out of it as much as possible as I cannot wheel it myself due to weakness, but because of this it has made my world smaller and smaller. I refuse to give in to it completely......strangely it hasn't affected my wicked sense of humour. If we didn't have that I can't imagine what life would be like.

I also get the spasms and very acutely, virtually all over my body but haven't found anything to help them that doesn't make my breathing weaker.

The thing is that most Doctors assume that this condition is intermittent and is mostly ulcers and other skin problems with joint pain. This makes it really difficult to get understanding and the right help because a lot of it can be invisible......hopefully when they see you on Monday it will shame them into sorting things out.....if not you'll have to get out of your wheelchair and give them a slap instead and while you're there give em one from me :D

Good luck Andrea

pheobe67 profile image
pheobe67

HI,

Just thought I would give an update here on my appointment this morning with the job centre. Basically the guy took one look at me and said he thinks I have been placed in the wrong category and should be in the support group. He said its up to me to appeal as his job is to explain how things work and what is expected of me etc. However he was so concerned by what he read on my medical letters and meeting me that he emailed them straight away to get get me into the support group. He said he wouldn't normally do this as its not up to him but he felt he should lend support and try to get it sorted as soon as. I was relieved to say the least. So now I have to wait and see what happens. He said the worst case scenario was they refuse and keep me in this group and he said he would just phone me in six months to keep everything ticking along. I just hope and pray now they put me in the right group...

Sarah...

andreafm profile image
andreafm in reply to pheobe67

thanks for letting us know....I was thinking about you today and wondering how you had got on. I do hope things work out for you and make sure you have got his name and keep in contact just in case.

Good luck

Andrea

Hi there,

Sorry for the late reply on this one! If you are still having difficulty, I'd recommend contacting the Behcet's Society who will put you in touch with your local support worker. Navigating the benefits system can be overwhelming and we are certainly happy to help.

All the best!

jean

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