ESA Has just been withdrawn, as had it for over 1... - LUPUS UK


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ESA Has just been withdrawn, as had it for over 12 months!

pollyanna profile image

I have just had a phone call informing me that due to the new legislation, that was passed through parliment 2 weeks ago and as I have been in receipt of this benefit for over 12 months, this will stop at the end of April.

I am feeling so angry and frustrated right now, as I have worked all my life since I was 16 and paid my national insurance and Taxes, never claimed anything.

Has anyone else had this phone call yet?

I really am feeling so angry right now :(

28 Replies

Hi Pollyanna

I completely understand your anger and frustration - what are you supposed to do now? I really feel for you.

What change in the legislation? I thought the House of Lords had kicked it back to the commons to sort it out because the Lords were unhappy with it being so anti disability but maybe I was wrong - I'll check it out.

I've only just been for my medical but have heard nothing back as yet and I'm really worried. I'm prepared to appeal if necessary. Can you reaaply/appeal? I understand that that is the last thing we feel able to do when we are so unwell but needs must. Did anyone see News Night last night - the debate was very dark about the future of the NHS and the social services for the next 50 years - saying basically there is no money left in the pot. Worth having a watch on iplayer - don't know where it leaves people with disabilities though?

You have the right to be angry - let it out in a positive way - go beat up a cushion!


Hi Pollyanna its me again. Just been on the internet and found this for you which is no doubt what the ATOS people told you about - how frustrating!!!!


Hi Cloggy 73, thank you for your kind response :) and I did bash a few pillows and although rather painful on the old wrists I did feel a little better,

Thanks for the research as well, I read it but I can't do anything about any of it, no appeal or anything. I am not entitled to the income based esa, so I guess I just got to suck it! But still makes me mad, I understand that there is no money but feel its unfair when you worked all you life and you have brought your children up with a work ethic and no one in your family claims any benefit, yet the are people who have never a worked a day in their lives, apart from working the system. I have no problem with genuine people who are poorly, but we all no someone who has played the system, and these people have never contributed, but still get there money! :(

I hope you will be ok and get awarded your ESA, and they don't give it you with one hand and take it off in the other, thanks again for your response and support, take care.and good luck :)

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We all in same boat :) i am angry too,i was awarded but know will stop soon enough,,makes me so angry at this country!!Hey come to us at Lupus is real!! Face book!!!

Sadly this is the case all round. I work with people many who have worked and who have mental health problems. So many of them are being told the same as you bang benefit withdrawn so many are being told they can work when they are clearly not well enough. All it is doing is makeing them ill. It is so hard on people who genuinely need and warrant financial help.

This is so so sad.these people who made this bill should come and live in the real world before making these types of changes.

I can think of other ways to save money with out taking from the people who need it as I am sure you all do to

Thank you all for your comments, I am frustrated still but, I wont starve or become homeless without it. Its just that little bit of independence I had left has now gone, and I have always had my independence and my own money as I have always worked for my money. One on the people from benefits told me last year, as I told him that this system is so wrong and you are made to feel like the lowest of the low and you feel ashamed claiming anything. He said think of all you have paid in as an insurance policy and now is the time you have to make a claim, I have to say this made me think yes I have paid this insurance all my working life, and I felt better about it.

There is nothing I can do about this however angry I feel, and I have decided I am not going to allow it to take what little energy I have left and make me feel even worse.

Thank you again for you kind responses, take care and have a good day :)

such a worrying time-what changes have been announced as far as dla is concerned ?

So how do they expect you to live????

Totally disgraceful.


I am so shocked, I didn't realise this was happening!

I have just read the link that Cloggy posted and I am soooo confused.

I didn't realise there were so many categories now for the payment, how do we know which one we are in etc

Like a lot of you I have been unable to work for 10 years, how on earth are we all supposed to manage.

can we reapply when our 12 months is up, or is that it, will they all put us in council housing when we can no longer afford our mortgages etc

Do the government have any idea how much stress this is going to put on all of us and how it is just going to make us even more ill.

I shall await the phone call with dread.

omg I thought the rule was 2 years not 1 year. I don't think I will get "income based ESA" as I have an ill-health pension income. My year is "up"/money & ESA will run out in summer. I'm awaiting appeal to get put in "support group" so don't know what happens in the gap between my year being "up" and my appeal being heard. If I won my appeal presumably my money starts being paid again as 1year time limit only applies to the "work related activity" group

The stress makes me ill - that at least may help my appeal as I'm trying to get in "support group" based on the "exceptional circumstances rules" - which basically say the assesment outcome should not be detrimental to your health.

These special/ exceptional circumstances rules may apply to other Lupus patients being entitled to the support group of ESA - Eg working/ looking for work may prevent you paceing activities correctly/resting enough & hence imapct upon how often you flare up, The stress (including financial stress) may cause more Lupus flares and may impact upon your mental aswell as physical health,

I think you would need supportive Drs to get the exceptional circumstances rule applied to you as appeals are based on you providing the "evidence" --To get in "support group if you have to prove " there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work-related activity."

ref from direct gov web site

and the details re wording of exceptional circumstances

hi pollyanna sorry you are going through this worrying time i wnt through it myself last year , but i went to citizens advice even before my medical and they said they would represent me if i got my benefit stopped but i was ok i wish you luck , i would tell you not to worry but you cant help it but just remember worry and stress isnt good for you let me know how you go on.

millyrose x

Thanks for your responses, comments and links :) Millyrose7, I was awarded it, but the new rules have come into place, so anyone who is on ESA contributions based, will either be stopped or put in the incomer related group, if you have a partner working less than 24 hours!

I don't know much about the other areas, I have never looked at the exceptional circumstances bit, however, not being able to leave the house unattended, no longer able to drive, or walk far without pain or fatigue how I would be meant to return to work, I really don't know. I have been advised to claim DLA for a few years but I never have, because I thought well I manage, leave that in the pot for someone who can't, maybe I should not of been so silly, and may well apply for it now. Truth is I really don't think I can be bothered to jump through any more hoops and is it actually worth putting myself through the stress of it all x

I'm a welfare rights adviser in Norfolk. The rule for ESA is that as soon as you have had contribution based ESA for 1 year, it will stop unless you are entitled to income-based ESA (i.e. you have to pass a means test) UNLESS you are in the support group. Some people may be able to lodge an appeal against the group they have been placed in, on the basis that they should be in the support group (SG) rather than the work related activity group (otherwise known as WRAG). Usually you can only appeal within a month of a decision (i.e. the one that placed you in WRAG in the first place) but you can lodge a late appeal within 13 months if you can show good cause for the delay. Ignorance is no defence, but a delay caused by serious illness might be accepted, as long as there is reasonable chance of your appeal succeeding. You could also ask the DWP to consider a change of circumstances at any time before your year is up, if you can show that your health has suffered a significant deterioration that would change the group you are put in. It isn't easy to get into the support group (only about 15% of claimants achieve it) but if you get help from a good advice agency they can support you trying this route. I hope this helps.

Tusk profile image
Tusk in reply to kulie13

Hi I have just read your information on ESA and it is very helpful as many people believe that the 1 yr limit is for all ESA but as you have pointed out clearly it does not affect you if you are in the Suopport Group. I am in the Support Group thankfully but have a querie you may be able to help with please. I sent my ATOS forms back in May 2013 and in August 2013 I received a letter from DWP explaining my money etc and it said that I had been placed in the Suppot Group not WRAG but at the end it says that this benefit will be paid until Nov 2014. It doesn't say anything else so I am confused, do you know what will happen after Nov 2014 then as they haven't said I will be reassessed or anything? I have assumed my benefit will continue until possible a reassessment.



Tusk profile image
Tusk in reply to kulie13

Hi I have wrote to you but made a bit of a mistake. I have looked again at the decision letter from DWP and it states that I am in the Support Group as I have said before but on the page of amounts to be paid it says 'The amounts on this page apply from 16 August 2013 to 28 November 2013' not 2014 as I previously told you. This is approximately 13 weeks do you know why this is etc please?

Many thanks


Hi all, There is a debate like this going on the Raynauds and Scleroderma site of HealthUnlocked - we are all in the same position and it is very confusing and I think that maybe these people who make the rules would like to have and live as we do for a couple of days and see how they feel. I too have been on IB for 6 years since being retired from work on Ill Health Retirement - had my medical on 1st March at ATOS but still waiting for that dreaded letter to come ... I will definately appeal cant live on fresh air .... Very angry, confused and stressed !!

Hi all esa problems as well my daughter has had to feed me and put on gas and electric.went for medical at atos didnt hear nothing for 3 weeks then the dreaded browm envelope came with a giro for £48.22 and that i was no longer going to receive any more just broke down have had enough. have now appealed have sent 11 medical letters,photos i will be receiving esa until appeal heard but takes a week for appeal letter to arrive so have to wait another week would love someone from the goverment to live like i do for a month x

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Hi, I really sympathise with you all. My wife has ME and spoke to the "benefits" agency this morning. The conversation has left her distraught, even more stressed. Basically her options were to divorce me and move out to live on the street to qualify.

Depression being a symptom of ME, is now worse. Any progress just wiped away in one letter and phone call. Lupus, ME, Fibromyalgia all fall into the bracket of a 'condition' with no miracle cure, the sufferers cannot work full-time, but can suffer severe pains, so why the fight to be placed into the "Support Group" for ESA.

The fight starts today. Best of luck to you all.

Have a look at this:

Try to see how you fit into the support group - the descriptors for this are on pages 24-26. Any decision from the end of April that you are not entitled to contribution based ESA because you have been on it for a year is not appealable, it is the law. It is really important to try to get yourself into the support group before then if you can, or at least state your case so that you are in the system. Do a late appeal, or say you've had a change of circumstances. If any of the descriptors on pages 24-26 apply you should be in the support group.

I am in exactly the same boat! Worked full-time for 37 years- brought up 2 kids too- 1 an Engineer and 1 a Primary teacher- husband has always worked- and got ill at 55- just over a year ago- paid me ESA for 12 months- now get nothing- it's a total disgrace! No-one in my family EVER claimed any benefits- absolutely enraged and nothing I can do

Any ideas, anyone? Thank you

glasgowannie57 I am sorry to hear you are in the same position, It's disgusting and there is nothing we can do! My husband now has to keep me, which I find very degrading as I have always had my own money. I now have no independence at all. Which is not helpful with the whole mood thing! I hope you will get by, big hugs ((x))

Thank you, pollyanna- so frustrated- not been easy -have been to 3 medicals and 3 tribunals in past year to get the 12 months money, too! Had to fight every inch of the way- when I queried why - was told it was randon- I was just unlucky- yeah, right- what about the many people I know that are 3rd generation 'sore-back' malingerers, that have never worked and have no intention of doing so - big hugs to you too xx

Totally agree hun :( I have decided that I will not waste my energy on getting stressed over something I can not change any more! (easier said than done eh!!) Take care x

Hi Pollyanna, I normally do not use these forums but feel compelled to because of yours and many other peoples plight. I lost my ESA last August after an assessment in June 2011. I was devestated especially as it was a nurse who assessed me and in 26 minutes she decided that I could do all sorts of things for 30 mins and in some cases 1 hour, how on earth could she say that when the interview was 26 mins and I was not the only person to suffer these dreadful flaws in the system. I used this as part of my defense and just a few days ago I attended my appeal which was heard by a Lawyer and Doctor. When I was called into the appeal I had not sat down before they informed me that my appeal was allowed on the grounds that I had not been awarded 15 points at the assessment when clearly I should have been and they were quite surprised by it. I then asked what category I was put in and they replied the work activity, I then asked if they would look at that again because of the number of health issues I have and they agreed and asked me a few more questions and they agreed to put me in the support group. I know that the DWP contract so called health professionals to conduct the assessments and even the DWP know this is flawed yet they still continue this farce. The good thing about the appeal is that the panel are completely independant and in my case they could see that I was genuine and like yourself I have up unto 2003 worked all my life and paid a lot more into the system than I have taken from them. I know there are scroungers out there but i also know that there are lots of genuine folk who are getting caught in the trap and the DWP know without a doubt that some genuine folk cannot deal with the pressure that these appeals bring so they do not take it any further. Try to stick with it Pollyanna, I know its difficult and it took me over a year, I had welfare fighting my corner although they did not attend with me but it was a great support and I say it to anyone please do not give up, its wrong that we have to go to these lengths but as they say the truth will out. I do not know how some of these so called professionals sleep straight in bed I really don't.

pollyanna profile image
pollyanna in reply to busman

Hi Busman, thank you for your kind response and taking the time an effort it has taken to write it. I did have the same issue as you and did go to appeal and I won the appeal no problem.

However, I was not put in the support group, and being oblivious to all of this I was just relieve and pleased that someone actually believed I was poorly, at that point I had a Dx on M.E. /CFS. As I was not in the support group and I am now well out of the appeal time to be put in that group, I am afraid I am unable to appeal! But hopefully your information may help other people. I wish you good luck and thanks again for the information, take care :) x

Thats interesting because if I had just taken the "offer" I would have been in the same boat, when I asked what group I was in they told me the work activity because to go into the support group you need to be in schedule 3 which is the next step up, to get into schedule 2 you need 15 points but it is not explained very well which is obviously why you thought you were okay. the doctor and lawyer at my appeal explained this very well to me but I am aware that not all panels are sympathetic to the individual cases, I was extremely interested when you said that you had the diagnosis of ME/CFS, I know first hand of the barriers that you have faced because my wife suffers from the same condition and that in itself was a great barrier when she was diagnosed about 12 years ago.

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