Just feeling pretty fed up.Have s.l.e and sjogrens.Have had for almost 20 yrs and have worked full time for 30 yrs since 18yrs old.My condition deteriorating over past few years on lots of meds like all you guys out there (prednisolone,mycophenolate, hydroxy,naproxen and so on...) meaning most of the year either off sick/reduced hrs or using holiday entitlement to rest.Fatigue,painful skin rashes etc etc so bad that my daughter and husband now doing all household chores. Applied for PIP just need a little help to be able to reduce hrs and manage fatigue better. Been refused so asked for the decision to be reconsidered.Told today still no. My next option to appeal through a tribunal process. Seems this PIP claiming such a hard stressful battle for what sems like a lottery draw as to whether you get it or not for us lupies. Rant over :-) thanks for taking the time to read x

19 Replies

  • Hi Pixie 66, have you spoken to CAB or DIAL about PIP?

  • I did speak to CAB some time ago before i initially applied they seemed really busy and said the person that might be able to help me there was too busy to see me. The person I saw quickly spoke to this other person then came back to me and said I should go ahead and apply but because of the nature of lupus,its very difficult to get PIP and advised that if I get refused there is an appeal proceedure. So all in all they weren't too helpful really x

  • Do you have a DIAL in your area, it would be worth making an appointment with them. They handled my whole application and I was awarded PIP. They may be able to help.

  • I'm not sure but I will check that out today x thank you

  • Hello...keep at it...go to the tribunal...maybe you could get a local welfare rights or to advocate for you,that's usually the most successful approach. I'm sorry we have to fight so hard...and you're right it is a bit of a lottery.I think our docs opinion should be good enough to qualify...

  • Its so stressful for those of us for whom stress is our enemy. I'm not used to asking for help always worked all my life. Just seems so unfair we all genuinely need help with this condition yet we have to go through this degrading proceedure. Your support helps and will spur me on. I can't come this far and give up now x

  • Don't give up, appeal isn't as bad as it sounds.. Ring Dla they wi give you a phone number let them know you want to appeal,they will send you at a form you only need to fill in a small section and why you should be entitled.. Are you with gmb or you can get citizens advice bureau to help you with hat section..I'm still waiting for my appeal date.. Keep fighting I gave up the first time. But do it now otherwise the process will start from the beginning again..

  • I am waiting for my refusal letter to arrive. I only found out yesterday when i rang the dwp for an update on my mandatory reconsideration I think they call it.Anyway the lady on the phone said all details of how to take it to a tribunal will be in the letter but i did look online last night and downloaded some info and an appeal form. Thank you for your encouragement. I will keep going.x

  • The best advice I can give you is to ask for the information from Lupus Uk from Benefits at Work. I couldn't find anyone to assist me with form filling so completed them with my husband using the information provided. It was only after I required support in the house provided from the Occupational Health therapist and social services that she said she could have helped me!! Paying the membership subscription I found beneficial too as it makes you think about how your condition truly affects you as we are very good at learning to live with our glass half full!! Good luck, there will also be information Benefits at Work can provide you with regarding a tribunal. Xx

  • I am with you there. Am one point away from basic limit and that is after getting it looked at again. We are going to go thru the tribunal process as well.

    Good luck to you too.

  • Oh I do feel for you 🙋, it's just not easy is it.

  • In the U.S., there are attorneys who specialize in cases like that. They call them disability attorneys. If you are granted the disability, the court pays the attorney - not you. My husband is an attorney so it wasn't difficult for me. I left my job when I had heard rumors that they were going to fire me and applied for disability income. I'm not sure how it works in your country, but it's a start. I believe you call them "Barristers." I'm sure there are some that specialize in what you are referring to. If your doctor will back you up you should not have an issue. The meds work temporarily. I will not take steroids any longer. The high dose of magnesium works for me, as far as an increase in energy. I put on 2 pounds and they are staying. That wasn't a problem for me, as I am thin to begin with, from the Lupus. Tomorrow in the US, we wear purple. It's Lupus Awareness Day. Not sure if you have it in your chapter.

  • Hi everyone. I was diagnosed with lupus last September after months of wrong diagnosis which left me extremely ill. Finally diagnosed in February that I have the sub acute strain, it affects my skin dreadfully & I have flare after flare. I am just getting my head round it all & want to apply for Pip but reading your posts it stresses me out already, which like many of you is a major contributor for a flare! I know that there are a lot of people that have suffered for many many years & I'm only just starting out! I hate it!! All the best to you xx

  • Hi. The one thing I was told by an insider was always to report or answer health questions as being at your worst, because as sure as eggs we all have bad days more than anyother. They do not see you on those days. All your imparements are real, your frustration is real your feelings of impotance are real.

    If they had to live 24hrs of our lives they would understand but unlike the BBC demonstrating how tough it was to live in 19th century poverty, no one can live our lives in all its reality 24/7 so we have to convince and educate people who don't seem to want to listen and go that extra mile for us.

    Perhaps if we could be referred to ST Thomas' for initial assessment, or have our test results sent there, GPs and consultants would have to take us seriously, knowing that the centre for excellence speaks the truth. Dreaming I know but there does seem to be an awful lot of so called professionals out there who have huge gaps in their knowledge and compassion. It is so hard.

    You are not alone!

    Hugs OOOOO

  • Hi. I am just thinking about applying for PIP, maybe not bother now as I am in the same boat as you. Good luck xx

  • Please don't be put off. From what i can gather now almost everyone gets turned down initially. Looking back i think I've been a little naive when filling out forms. And at the assessment. You must be prepared and remember all day to day issues you have,even keep a diary for a week/month.This will help with the questioning. Its difficult when you have lived with an illness for many years with a glass half full to think on the spot. And they are very clever,very pleasant but very clever with the questions. Any medical reinforced info you can send with your application good too. Doctor/consultant etc helps apparently. I just wish I had known this before.Good luck xx

  • Hi Pixie66

    Thank you for your reply and your positivity. I work in the 3rd sector so have a lot of people telling me to apply and I suppose they should know as their clients are on DLA or applying for PIP. I will have a go. Good idea to keep a diary and I definitely have doctor/consultant behind me as I am on weekly bloods at the moment with taking Azathioprine. White bloods very low. Good luck xx and thanks x

  • When applying for PIP you have to state absolutely everything especially any joint or muscle pain as that's what they are looking for. they don't award it for skin rashes or fatigue no matter how bad it is. I'm going through the process now and that's what my specialist told me to do. Also if you have to take any general pain killers like paracetamol put that down as well. I find out my decision this week. I just have my fingers crossed atm.

  • Hi

    These are good points. I eat painkillers like sweeties all day , varying strengths as I also have Chronic back ache. Sometimes have to chose which paint to try and alleviate. Good luck with your application. Nicky xx

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