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I have been chatting to my MP and he is very interested in constructive ideas to improve the esa assesment anyone with constuctive ideas about the forms or assessment itself please let me know i will forward your comments to him. but they do need to be constructive not just its not fair, but hes willing to see what he can do with them. we may not get anywher but at least he has offered to put them forward.

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i to tried this but he was unable to help, but im willing 2 do anyyhing for more lupus awareness ,the questions need to be more delving and each lupus case is individual so therefore should be more constructive, they should also change the wording not to can you do this, it should b how long can u do this for!!! yes i can hoover on my hands and knees but ir takes me 2 hours are u understanding wot im saying, its not just phyical, mentally effects our memory and day to day lives , invisiable and dibilitating hope i have helped and not just ranted good luck x


1. Incurable means incurable and prognosis is uncertain in Lupus. Current ESA has nothing built into it that acknowlees incurable deseases where symptoms will remain constant over someone's life, e.g. we are required to attend regular medical reviews which are costly and unecessary. People should be given the opportunity to opt. into work programs, but should not be forced where it is detrimental to the health conditions.

2. The time frame between first claim and assessment should be shortened. People are currently waiting many weeks beyond week 13 .o recieve full ESA entitlement. This means financial hardship for many sufferers.

3. Full ESA should be back dated to the first date of the claim. Why is it currently backdated to week 14 when it has been established there is an enttlement to full ESA?

4. The fifteen point rule should be adhered to. This is not always happening. It should be aknowledged that people can present well on the day, but if activities cause pain there should be an automatic 15 points which entitles the claimant to full ESA.

5. There needs to be improvements in Atos communications. The phone lines are often jammed and this is particularly frustrating when trying to cancel an appointment due to ill health on the day. People are often threatened with loss of benefit if they fail to attend. People are often unaware that they can request a home assessment.

6. Improved access to assessment centres. People are often required to travel miles to thier nearest assessment centre. There is often limited parking close to buildings.

7. Quality standards should be improved. Paperwork frequently goes missing and current timelines are not being met, putting people, already enduring substantial suffering, under more strain.

I wish you all the best with your campaign. Perhaps we should all be approaching our MPs to force the message.



Great idea flutterby1, glad you raised the issue tatty,couldn't have put it better kittykat. Only joned this site yesterday but already feel inspired for the first time in ages that i can actively make a difference, even from my bed...all my local MPs will be getting emails...poor things, the amount of pent up frustration from this flippin' lupus is coming their way ;)


Hi, I am now self employed as I was taking too much time off work, which was due to being tired and suffering from infection after infection. They made it difficult for me to stay basically. I then had to claim housing benefit, I then set up my own company at the end of last year, and started to claim working tax credit which I used to fund the expenses of the business in August this year as I had no savings. I informed HB and now out 4 payments a month of £88. they have reduced my HB and council tax to take 3 of them so I have one £88.00, and now I owe them £500.00 - so the last £88.00 I will have 77.00. What is the point in trying! I am pushing myself daily to try and achieve and not claim benefits and support myself and my 2 children (no husband) Its a struggle every day and this is how the Government Support! I have no faith in achieving any other benefits or shortening of processes.


thanks for all your feedback i will pass your comments on to my MP


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