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Should Lupus UK be trying to get involved re plans for those on long term sickness benefits

It's in the news again about changes to disability benefits

I also posted something similar a while back

Some of us with Lupus have to accept that we can never work. Continual re assessments to see if we can are distressing and a waste of time for us all. It is also a needless expense on the government paying for these continual assessments

I'd like Lupus UK to look into things for us re the green paper and how it may affect those with Lupus, such as

(a) If GP's are encouraged to approach if someone is fit for work then as patients with long term health conditions can we force GP to put in on their notes that we are not fit for work, and where it applies that we never ever will be fit to work, hence we should not be continually re assessed That way it's a matter of medical record which we can use if asked to re-assesment for ESA PIP etc

(b) Should Lupus be one of the "named" conditions where if assessed once as unfit to work because of Lupus, it is not right to ask to be tested time after time.

(c) the green paper page 11 says your views are important "Please let us know what we need to improve so that we can build a plan that will bring real and lasting change."

Here is the link to the actual green paper

You can respond to this consultation at:

email at

or write to The Work, Health and Disability consultation, Ground Floor, Caxton House, 6–12 Tothill Street, London, SW1H 9NA.The consultation will run until Friday 17th February 20

11 Replies

Hi fabwheelie,

We will certainly look into the green paper when it is released and take what action is available to us to ensure fairness and reduce the pressure on people with lupus who are unfortunately unable to work.

Due to the extremely varied nature of lupus we need an achievable goal. It is unlikely that lupus would be added to a 'do not reassess' list because the presentation and severity of symptoms is so wildly different between people. Whilst there are many cases that certainly should be exempt from the stress of reassessment, other people are able to continue working with lupus and not claim disability benefits.

We want to ensure that the opinion of the person's doctor is taken into high regard and an assessment of the potential health impact of the reassessment is considered when deciding whether somebody may need a one in the future. Hopefully, this will prevent a large number of people with lupus from having to undergo this process.


I think it would be most beneficial if lupus UK were to explore the implications of the planned changes. I know people with lupus who manage to remain in work, but not always by choice, and I know even more who are unable to work. As you say, once determined as unfit to work, constant reassessment does no good at all.


I was declared unfit for work 3 years ago and put in the support group for ESA. I went for reassessment in August and given zero points and told I am fit for work and have to sign on , others on here are going through the same thing . I am waiting now to go to appeal. Not holding out much hope from what I've heard . My friends neighbour has scleroderma and has just lost her appeal for pip , they have taken it off her and taken her motability car off her . The government won't do anything to help us they just want to get everyone who is sick or disabled to get a job so they can save money. They waste money all the time I bet it's costing millions to change DLA to PIP for example. The WCA is a joke you would have to be completely bed ridden to get any points for the descriptors and the changes will probably make it even more impossible. Like someone on here said , before they start stopping reassessments for certain chronic diseases they will try to get as many of those people as possible off benefits and then probably make it virtually impossible for anyone to get into the surgery group in the first place .

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Support group i meant sorry not surgery group, oops .



Regarding ESA I had to appeal to get from WRAG (work related activity group) to support group a while back. I won my appeal. I could be re assessed at any time.

I had a lot of help from my local council social services who had a welfare rights officer. It is definately worth seeking their help.

My appeal to get support group was won on the grounds of "exceptional circumstances" which is worth a welfare rights person looking into this for you. To get this you would have to have medical evidence to support a statement that there would be a substantial risk to your physical or mental health if you were found to be fit for WRAG.

When doing WCA both pain and fatigue should be taken into account. They are also ment to look at whether you can do something "reliably" , " repeatedly", and in a "timely" fashion when doing the WCA

It's often a case of "fitting" your symptoms to how they "score" you. Please see my other post on this for more details

If you are a member of the charity Lupus UK (

you can also access guides to ESA etc for free ....


Hi I have just sent my appeal off on Tuesday with help from welfare rights team and she is appealing that I fit the exceptional circumstances. I supplied medical evidence at assessment stage and mandatory reconsideration stage but it made no difference they didn't change the decision.when I first claimed esa I was put into the work related activity group but the man I was seeing at the job centre said he thought it was wrong and he gave me an address to send an appeal letter to . I did send a letter , no court case or anything and I was moved to the support group. It could be 3 to 4 months yet before I get to a tribunal hearing so more stress . My Mandatory Reconsideration Notice said they have based their decision mainly on the physical examination on the day of assessment they said that to try and get out of all the lies they had told like saying I could hear in my ear that's had the ear drum removed following surgery. Sods law I was on a good day when I went for the assessment I only had pain in my neck . They haven't taken pain , fatigue or variability of the condition into account they have made their decision based on a snapshot of my condition on the day which they are not suppose to do x


Just started reading the green paper and gave up I was losing the will to live , as I said they don't care about anyone's health just about getting people into work . They are saying that they know working will help sick people recover , they know nothing , it won't cure lupus going to work there is no cure . They keep saying disabled people want to work and some probably do if they can . There's nothing about people who can't work because working makes their condition worse , they are pretending they are trying to help sick and disabled people, they are actually insulting our intelligence if they think we are stupid enough to believe that .They want chronically ill and disabled people in work to save money to make up for all the money they waste by changing things constantly not because they think working will be better for our health they don't give a toss about our health. Has it not occurred to them if they stop wasting money and put that money into improving the NHS then maybe less people would be ill . universal credit is something else that will be costing millions to implement and citizens advice and other benefits experts are saying it's not what has been promised it's so complicated, just another government con .

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I think if your sick at the time there's no way you can work and the stress of these appointments are something else, it's your house, food, bills will all be effected if you lose that benefit and then where will that person be? In a hospital bed? God knows it's rediculous that people are put though this stress and lies and mental absue, because the govement wants people off it because of that 1% well why not focus on that 1% that is ruining everyone else's life's! And if you can work living with this then you won't be claiming anyways? Why retest someone again and again when nothing has improved and causing more and more stress, if I'm stressed my lupus goes into over drive, rashes joint pains everything! It's such a life line this benefit For people who are generally sick! It's so frustrating this has to even be talked about.


I brought up something similar not so long ago and was told lupus uk simply didn't have the resources to take up such causes and lobby on behalf of its members , I wonder if like some

Other charities they are scared to face the government come on lupus uk speak up for people with lupus sle etc.


Hi farmerfeste,

We are a very small charity with limited resources. We currently have seven staff at our National Office and only three are full time. At the moment we do not have a staff member dedicated to campaigning to policymakers, but we do as much as we are able.

ARMA (The Arthritis & Musculoskeletal Alliance) of which we are a member, will be preparing a response to the consultation, and I will be attending the policy meeting where this will be discussed on 23rd Nov. We will be included as a part of this response and submit our own as well.


There's another problem, as well - the UK government very quietly slipped in some legislation that charities have firmer strictures against speaking against government policy. I think that one passed last year. So if anyone wishes to keep their charity status they have to toe a very very thin line. It's difficult, and it's becoming even more difficult now. The choice left is 'speak out against the government, or provide help and support to people. Pick one, because you can no longer do both.' It sucks, but there it is.


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