Are you a Lupus sufferer and have been turned down for PIP (new name for DLA) support?

Posted , 15 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I suffer from Lupus SLE with the accompanying conditions of reheumatoid arthritis, fibromyalgia, raynauds, kleinfelters. I used to be on the life award of DLA but since its been taken over PIP, I was transitioned to PIP and had to undergo an assessment. As many lupus sufferers know this illness is not curable and it fluctuates from one day to the next, the day i was assessed was the day i was not having a flare up. I recently got a letter back from PIP after 14 weeks advising that I was not entitled to PIP and that they were going to stop my DLA. In their words I had lied on my application form and i wasnt entitled to support. I am a fighter and sent them the following letter with extracts of their non puctual letter and i must say that even though they mention on the claim for you to describe your worst day well they take their decision from the day of the assessment - have a look a my letter to them and let me know if you have had a similar issue with PIP or their assessment colleagues:

Personal Independence Payment 9

Post Handling Site B


WV99 1AG


Letter of Dispute against Decision Maker Reasoning

Dear [removed],

I received your letter dated 24 January 2015 regarding the decisions you have made based on the letter from PIP, I am absolutely devastated in your reasoning to decline me PIP and also terminate my Disability Living Allowance and I will be taking legal action against this and will also be contacting my Lupus Specialist at the [removed] as well as my GP.

I have added extracts of the letter I received and have answered each and explained my thoughts on these points.

But first I must give you an in depth summary of my Disease.

I have a fluctuating disease called Lupus SLE, fluctuating in the sense that every day is not the same, I have good days and I have bad days. When the assessor interviewed me I was having a good day.  On my application I am asked to describe my worst day in which I did, I made it clear to the assessor that he caught me on a good day which he acknowledged.  But my illness consists of: Rheumatoid Arthritis, Fibro Myalgia, and Chronic Fatigue which can cause balance problems, Reynaud’s – which affects blood circulation.

After reading your reasons to deny me any help I was left devastated, I am 1/100 men diagnosed with this illness and I have to take steroids, hydroxychloroquine, azathioprine tablets every day without fail otherwise I would end up in hospital or worst effect I can die from my illness. The assessor I feel has been completely unfair and possible inaccurate in his data collection.

Some of the following assessment were not carried out and all exercises were done whilst I was sitting down – at no point did I stand apart from to make a coffee.

Extracts of the letter received and my explanations.

“You said you have no difficulties with communicating verbally, reading and understanding signs, symbols and words, engaging with other people face to face and making budgeting decisions. - I agree you can manage these tasks unaided”

I have no problem in communicating in general, I work for the NHS and I have to speak clearly as I deal with sick children and I have to be accurate in my data collection. I don’t deal with budgets and my partner deals with my finances for example monthly bill payments and mortgage payments.


“On your claim form you stated you needed help with taking nutrition, managing therapy or monitoring a health condition and managing toilet needs or incontinence but at the assessment you said that you needed no help with these activities and the evidence confirms that you can manage unaided.”

I am obese for my age and height and I must maintain a healthy weight, my consultants and Gp have advised this as I regularly take prednisolone for my illness which causes me to gain weight. I am currently awaiting a physio appointment which my consultant has made a referral for as both of my knees are weak and at the time of the assessment I was wearing a knee brace. When I my illness flares up I need support in toilet needs because I find it difficult to wipe myself. My partner is always on hand should I require help to do this. I advised the assessor that I feel awful when she helps me because I’m so young and I feel like a young man in an old man’s body. But at no point did I get to go to the toilet during my assessment.

“You told us you have difficulties with preparing food because of restrictions in hand movements. On examination you were able to maintain a good grip and had adequate power and movement in both hands. You were also informally observed to make a drink, carry and hold said drink and open and close drawers and cupboards. I consider that you can make a simple meal without help.”

My grip was good on that day as I made the assessor well aware that I was having a good day without any problems. On my bad day I can’t even bend my fingers and a few months ago I had to have a steroid injection in my hand because the inflammation of my fingers did not go down. The assessor saw me make a cup of coffee, he did not see me cook or prepare food, this is all done by my partner who was at work at the time and I took the day off for the assessment.

“You have stated that you need assistance with dressing and with washing and bathing. You say that you find it difficult to get in and out of bath, your partner has to help wash you and that you cannot wash your hair . I do not accept this”

In the mornings when I have a flare up I struggle to use buttons and zips or even tie my own shoe lace, at no point did the assess ask me to give him an example. When I have a flare up I struggle to raise or lower myself into the bath and I cannot raise my arms to wash my hair, I’m quite hurt that you do not accept this. My partner helps me wash my hair because although I can raise my arms, I often have chest muscular skeletal pains which restrict my movement and causes intense breathlessness. I don’t feel lifting my arms to the level of my head is indicative of what it take to wash my hair. Also can I ask to be assessed by an exercise for intercostal pain and breathlessness?

“On examination you were able to put both hands behind head, bend and twist your body, crouch, squat, sit, stand and maintain an adequate grip”

For the exercises I remained seating at all times, I was able to twist slightly and not completely, I did not nor was I asked to crouch or squat and had Id been I would’ve struggled. When he asked me to put my hands over my head my hands got as far as my ears and did not go beyond my ear, the assessor has not been truthful or accurate in his examination.

“Although you may receive the help stated I can only consider help that is reasonably required. I cannot consider help with domestic tasks, food shopping and problems using stairs”

As I made it clear to the assessor, we have a cleaner who does the household chores for me as I struggle to do this – my cleaner is not part or support but a private cleaner. I also explained to him that all shopping is done on the internet and my property in which I own does not have any stairs.

“You said you have difficulties with planning and following the route of a journey, cannot drive and have to take taxis when going out. I do not accept that you need any help to plan or follow the route of a journey”

I told the assessor that I use the internet or route planner on Google maps to plan my journey, prior to going out or my partner will drive us there.

“You are fully mentally competent and aware of common dangers and have no speech or cognitive impairments which would restrict your ability to plan and follow the route of a journey. I cannot consider being driven in a car or having to use taxis”

Due to the distance I can walk which is not very far and that I struggle when using stairs I have access to work in place whereby I have a taxi to take me to and from work on a daily basis, I contribute to this and get paid the difference back. Upon starting my job I underwent an occupational health assessment and the Doctor who I saw recommended after physical examination that I am not to do anything that will exacerbate my illness nor should I do any manual handling.

“You have stated in the initial questionnaire that you’re walking ability is restricted to less than 20 meters. However, at the assessment you state that you can regularly walk from your home to a nearby car park”

”You estimate this distance to be 150 metres. Although I accept that your walking is restricted I do not accept that it is at the level that you have stated”

Please see map below of the distance from my front door to my nearby car park, as you can clearly see it is not 150 meters but a mere 20 meters, that is the distance I can manage, but I wasn’t assessed in my walking and sat down throughout the meeting apart from making a coffee.

My nearby car park

My front door

Approx 20Mtrs

Photograph showed my front door and a private carpark next door

[Photograph has been removed for privacy purposes] 

Please also note a copy of this letter will be sent to my consultants and my GP to make them aware of this decision to deny me any help with this debilitating disease. I think it would also be appropriate that you approach both my GP and Consultant for information on my health as I feel that this was not done prior to your decision making.

I look forward in your immediate response to this letter

Copies to:


Dr Consultant Rheumatologist

Professor Specialist is Systemic Lupus Erythematosus (SLE)

It seems as though the assessor falsified my assessment, I would advise anyone having an assessment, take someone with you.

3 likes, 31 replies


31 Replies

  • Posted

    Hi how did you get on with your appeal? good on you for tackling them best of luck a fellow lupus suferrer
  • Posted

    Omg that sounds horrendous and such a stressful time which obviously could possibly have caused you a flare up of one or the other,

    Good on you for standing your ground, I have been told of cross communication by several people now who have had there benefits stopped or reduced,

    I think it's disgusting, I'm a tax payer age 57 worked full time all my working life also for NHS mental health and I'm disturbed that genuine sick disabled people having to fight for help,

    Get rid of all the scrounges who scam this country and who have probably never done a honest day's work,

    If you turned up saying you had a bad back with a pebble in your shoe they would of given you the full whack,

    Sorry rant over,

    It's not a joking matter but it makes me so mad to see sick people struggle,

    I have lupus SLE, fibromyalgia, hearing loss in both ears having to wear two hearing aids, suffer vertigo balance problems, horrendus headaches, continual sinus problems for which I've had two operations, Dr has just put me on antibiotics for 8 weeks for sinuses,

    Joint pain and stiffness, extreme fatigue but still manage somehow to work full time,

    I say sometimes it's like automatic pilot I have a mortgage and just go,

    I've been told I could claim PIP, firstly I don't know where to start and don't feel I could go through what you have just gone through it sounds horrendous and to stressful,

    Although I live in Wales and have been given a free bus pass for being deaf this is a God sent as I can't drive now because I can't turn around on a bad day can't move my neck and have no worning before having vertigo, I'd be pulled over thinking I'm drunk.

    You fight all the way if you feel strong enough it sounds like you have a good partner to help and support you get what is rightfully yours to make things a little easier for you.

    Keep us updated and wish you all the best in your claim

    • Posted

      I'm 68 next month and up until earlier this year I was on DLA (High Mobility & Middle Care) indefinitely.

      I could see what the intention was behind PIP and didn't like it one bit. So when they offered me the chance of a lifetime to transfer from DLA to PIP late last year I decided against accepting the offer. OK, It caused a drop in our income of approx £250 a week, but that is small change when weighing up the fact that I would be filling in these PIP forms every couple of years and probably having bi-annual Tribunal hearings to fight my corner.

      It's all a question of if you want the money then you have to follow the system that the government have set down to see if you qualify.

      If you want a peaceful life than don't bother claiming.

      It's much the same as being unemployed or sick - you have to jump through the hoops if you want the taxpayers money.


  • Posted

    Update: thanks for the replies both, it's so nice to hear from a fellow sle sufferer, well I've waited 2 months and paid £44 for my NHS hospital notes and today they arrived. My partner and I will be going through the notes and gathering evidence. It is stressful but I have to stay positive as I will flare up. Make me feel a little depressed as my rheumatoid arthritis has got so bad that I have had to buy 2 walking sticks. But lupus is a fluctuating disease and I won't need them every day but I'm hoping that my worst day will be the date of court so then my illness will be visible and I'll win. I know who I'm voting for this May and it won't be those Tories !
  • Posted

    Hi there,just wondering how did you get on with your appeal??I have lupus SLE as you know we have a good days & bad days,I'm kind a worry,because I have appointments on the 18th this month for my any advice really appreciated.thankyou
    • Posted

      HI juniarti, I have SLE and it make me so mad that we have to go through this when there are so many making false claims, if the assessor could only walk in our shoes for a month they would understand. anyway with that beening said there is some info here from the citizen advice bureau, that you should read before you go to your assessment,           

      sorry you will have to copy and paste, hope this helps and good luck. Let us know how you get on.     

    • Posted

      Hi mkw30,tanks for the link.I don't even know pip was,until my neighbours knock on my door to borrow some money.I don't understand how he get it.He on jsa and know he get pip as well.he walk around drinking beer.going to the gym.and he get it with out face to face assessment.this is why I don't understand the system.and now me off work for couples of months now,not even get my ssp.this is ridiculous.anyway sorry I'm mumbling away there,you we're right about,put  the assessor on our shoes just for couples day.see what they think lupus SLE is.since I got this illness it changes everything,my look,my personality my life style and purse.well I can go on and on about it.I will let you how I get on with my assessment finger take care  yourself and stay strong,we are lupus warrior xxx
  • Posted

    hi max i have sle and i was awarded standard care rate, just tell the truth thats all you can do , mightt be useful to write down every aspect of your life , what you can and cant do also your bad days must be over 50% good luck 
  • Posted

    Hi max55188, This is a great post really helpful, sorry you are going through this, please keep us updated.
  • Posted

    hi new have lupus was thinking leaving work myself hurting a lot more now.

    like to know if you do appeal. id try again. 

  • Posted

    I applied for ESA twice now for SLE Lupus. Your right Max on the days I went to the assessment I had no flare up and notified them of this. So I was rejected. On both occasions I appealed and won the appeals. I am not applying for PIP
  • Posted

    Hi. I went for an assessment on the 9th June 2015 3 weeks ago which was on a Monday. My appointment was actually the Friday before but I had a massive flare up an could not walk at all.  I live in Dudley my assessment was in Stoke which is 50 miles away.  I had to catch 2 buses train then 2 buses again to get there. I called the PIP number told them I would no way be able to get there as I had a big flare up that would last until the weekend. They arranged it for the next week in Walsall which ain't that far from Dudley around 8 miles away. On the day my flare up had gone.  I could see the assessor watching my every move I just told her the truth. I know I will be penalised and probably rejected because I was okay on the day.  Will update you when I recieve my decision. Take care fellow SLE Lupus sufferer.
  • Posted

    hi just been reading your letter i have just got my dissabiluty back say i cant have it i suffer the same has you really dont know what to do ? just wondering did you win you claim for dissability
  • Posted

    yes i suffer from lupus and fibromyalgia  i have been on dissability for four years i had a medical which has been regected so really not sure what to do has not much of a bright person
  • Posted

    hi just wondering if you won your case has i have lost my mobility and wondering to take it to court has i got my mamtotory  i suffrer the same has you only problem is i can understand but not very good in front of people i dont know even thou i show i can

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up