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January's Blog (Part 2) - Peter and Sandra's experiences of claiming benefits with lupus

The second part of this month's blog has been written by Peter* about the experiences of him and his wife Sandra* claiming benefits for her lupus. Thank you Peter for taking the time to write this for us.

*These are not their real names with have been changed to protect their identities.

My Wife was diagnosed with lupus after a serious fall down stairs. During electrical tests carried out to check for nerve damage, she suffered a quite severe reaction, which at first was diagnosed as rheumatoid arthritis but was subsequently diagnosed as lupus. It was thought that her continual ill health had been the result of her undiagnosed lupus since her teens. She was diagnosed in 1992 at the age of 48.

It was suggested to her that she should claim DLA. She was also advised to apply for Serious Disablement Allowance (SDA), which was about to be phased out for Incapacity Benefit (IB). For the SDA, upon seeing the evaluating doctor, she was immediately classed as having 80% disability and the SDA payments were awarded. Ironically, my wife has to have a review every ten years or so to evaluate her capability to work? I think the next one is due when she will be circa 77 years old. When I reached 65 my wife was invited to give up the SDA and claim a pension. We were advised not to do this however because SDA is tax free and had she claimed a pension I would have had to pay tax.

As for the DLA, she was granted care at the lower level and mobility at lower level on appeal. The tribunal advised her that she should be entitled to more but they could not grant more than was applied for, so they suggested an appeal.

We had to travel roughly 70 miles each way for the appeal. At the time my wife could barely walk and the journey exhausted her. The doctor on the panel told her that lupus did not exist, but after being asked to wait outside while they discussed her case, we heard a tremendous row going on. Upon returning to the panel, my wife was advised that she would be granted higher level mobility, but again as she had not applied for an increase in the lower level care, they could only award the higher mobility side of DLA. My wife has never asked for an increase as she was too tired to go through it all again.

I too was granted lower care and mobility at the same original appeal. I had been injured on duty in 1977 but as my problems were getting worse I asked for a review of my industrial injury (at the time I was awarded a small cash payment). At that tribunal, I was told that the original decision stood BUT the examining doctor was an Orthopaedic Surgeon. He told me I had quite severe arthritis in the spine, so I asked if I could use this to pursue an increase in my DLA. I wrote to the DWP asking for an increase and included the doctor’s report from the Industrial Injury appeal. I made no specifics but received an increase to medium care and higher mobility.

I appreciate that the granting of DLA etc. is getting more difficult but our experience is to keep going. If the forms appear daunting then I understand the Citizen’s Advice Bureau (CAB) will help - If necessary coming to the home of the applicant. I often wonder if the DWP rejects applications initially, hoping that the applicant will give up. DON’T; the appeals procedure, although daunting, (in our experience) in the main is quite fair. It does help, if as in our case your GP gives you written support.

I would say this to finish - NONE of the benefits are a privilege, if you are or have been a UK taxpayer, or married to one IT IS A RIGHT. In our case DLA/SDA have made the difference between poverty and being able to get by.

Next month we will feature more stories from people with lupus about their experiences of claiming benefits.

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

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