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February's Blog - Diane's experiences of claiming benefits with lupus

This month's blog has been written by Diane* about her re-application for ESA whilst living with lupus. She has been kind enough to share some very helpful information and advice for other people thinking of applying too. Thank you Diane for taking the time to write this for us.

*This is not her real name which has been changed to protect her identity.

I was "retired due to ill-health" in 2003 because of my lupus and received a small amount of Incapacity Benefit (the amount paid was adjusted to take into account the fact that I had an occupational ill-health pension). I attended a medical as part of my assessment for Incapacity Benefit but have not had to go for any further medicals. I think this is because my symptoms have remained the same so I have a medical on record.

In 2011 I was transferred over to Employment and Support Allowance (ESA) and had to re-apply for my social security entitlement. I filled in the forms sent to me and I was initially placed in the Contribution-based Work Related Activity Group (WRAG).

I appealed this decision and got placed in the Support Group. I was waiting a year for the appeal to go through, but once I had my actual appeal the interview was very short and it appeared as if the appeal judges had decided to put me in the Support Group based on the forms we had submitted, so they did not need further information from me (I had prepared in case any further questions were asked).

I had support of my GP and Consultants for my ESA claim. For my appeal I also had help from my local council social services who had a welfare rights officer (my GP referred me to them). LUPUS UK also helped by writing a supporting letter after I e-mailed with a few basic details.

For me, getting placed in the Support Group was under the "exceptional circumstances rule" as I did not fulfil any of the "direct into" Support Group descriptors. Being in the Support Group has made a big difference to me both in keeping my health stable, and financially.

For people with an income from occupational pension it is worth knowing that If I had remained in WRAG, the contribution-based ESA would have transferred to "Income-based ESA" after a year (365 days) and I am not entitled to Income-based money as I get income from an occupational ill health pension. This rule about only getting contribution ESA for 365 days only applies to WRAG not the support group.

Income-based ESA takes any income into account (including that of other people you live with), whereas contribution-based ESA has some rules whereby some of any occupational pension income is not counted when they work out how much ESA will actually get paid. In my case I only get a very minimum amount of ESA as my ill-health pension is quite big.

Advise on filling in the form (Work Capability Assessment)

As far as I can tell the assessment doctors have a basic understanding of lupus; its general symptoms, how it varies from individual to individual, and how it can be unpredictable and vary from day to day. For example NHS direct info on SLE is easily accessible;

However I think it important to clearly spell out and in detail how lupus affects you and for your GP to be fully aware of this. For example, I get approximately 1 to 5 days every month when I am “bed bound” and sleep up to 17 hours a day finding it difficult to even get up , washed, dressed etc. never mind doing things like walking, standing for long, doing household chores etc. Even on “good days” I sleep all morning and have to pace my activities throughout the afternoon and evening so that I am not “bad” on subsequent days. Therefore I was very detailed in my description, rather than just say I had fatigue/ exhaustion. I discussed the details with my GP so they are fully aware how lupus affects me in case they get asked about my condition.

I did some research before I filled in the forms. I found out that there was guidance for health care professionals who undertake the ESA assessments (Work Capability assessment);

Interestingly it has a section that states variable and fluctuating conditions should be taken into account (e.g. pain that results from performing an activity, whether the activity can be repeated and in what time-scale) and states, "The choice of descriptors should reflect what the person is capable of doing for most of the time". In other words, could the person normally carry out the stated activity when called upon to do so?” It also states, “For conditions which vary from day to day a reasonable approach would be to choose the functional descriptors which apply for the majority of the days.”

I also found another detailed document which gave the descriptors and scores for each that would be applied.

The scoring system for WRAG are on pages 18-25, and points for Support Group are pages 26-28.

I found this document useful in determining how I filled in my form. If a claimant is awarded a score of 15 or more points, they will have limited capability for work and be entitled to Employment and Support Allowance.

I knew I probably would have to get a combination of scores from different activities and that it would be unlikely that I would be considered severe enough to get a score of 15 based on just one activity such as walking or standing.

This document also gives the criteria for getting placed in the Support Group (page 26). It is also worth knowing that if none of these apply the exceptional circumstances rules may apply (see page 10).

In my case I used the exceptional circumstances that “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”.

I made a case that doing WRAG would not allow me to pace my activities, that this would impact upon the way I keep lupus under control, and that it would also make my mental health worse (I had severe mental health problems associated with trying to work when I was not well enough, and of mental health problems associated with accepting that I am not well enough to work).

To get ESA at all you have to get a score of 15. They are quite tough about where they score you, so they won't apply if you just occasionally have a problem - but they are supposed to score what you can achieve reliably, repeatedly, safely and in a timely fashion. If you can't do something 51% of the time, it should apply. You may get 15 points from a single “descriptor” if your problems/symptoms are very severe or you can get 15 points from a combination of things that you cannot do. Fatigue and pain should be taken into account as to whether you can do something or not, so when filling in the form point out what pain and fatigue you experience.

Lupus fatigue and pain can be hard to pin down, but it often means you can score because you either might not be able to do something in the first place, or it would cause such a serious after-effect that you couldn't repeat it or do anything else for the entire day. Also remember that fatigue may impact “mental cognitive and intellectual functions” as well as physical e.g. you may get physical pain from standing but also fatigue may impact upon starting and completing daily routines, coping with social situations etc.

LUPUS UK is a member of Benefits & Work and is therefore able to provide their guides for claims and appeals on a variety of state benefits to members of the charity. You can find out more information about the guides we have available and how to request them at

4 Replies

Hi Diane

Thanks for sharing some very helpful info for claiming ESA. I am glad you got the result you wanted as you deserved to. Hope your health improves now the stress is over.X


Thank you so much for sharing this is going to be really helpful for so many people-I have not been through the process yet, but it is looming....And so many people just don't get this illness, as we can look so well but be really suffering!! I am so glad it worked out for you :-) x


Thank you for sharing ✳❇


re the scores the link does not seem to work any more ... here's similar ones with how they "score" you .....

and a long doc but see page 63 onwards re scores ....


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