PIP: I was diagnosed with Lupus in February, my... - LUPUS UK

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PIP

Bear15 profile image
11 Replies

I was diagnosed with Lupus in February, my rheumatogist now thinks I also have Fibromyalgia. I work full-time and struggle sometimes to get through the week, so my weekends tend to be spent resting. The thing is I live alone with a mortgage and car finance, so not able to cut my hours down, someone suggested I apply for PIP, never heard of it until now, can anyone advice me how to approach the application and I understand I will have to have an assessment, not sure what to do. I am very good at hiding how I feel and pain, that's how I kinda get through things, what worries me is I may look and sound reasonably well, but feel terrible, so when I have the assessment, they may not understand how poorly I feel at times. Sorry to ramble on, but does anyone get this benefit, if so could you advise me the best way to approach it.

Thank you

Dawn

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Bear15 profile image
Bear15
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11 Replies

Hi Dawn, to apply for PIP you could contact Lupus UK lupusuk.org.uk/benefits/

They can help and advise you. If you need help filling the forms out, Citizen's Advice are very experienced with this. Don't hide your feelings, and remember it's all about how your condition affects you. Give answers that reflect your worst days and be very specific about how you feel. I'm sure others will add their knowledge and experience to help you, and good luck.

Bear15 profile image
Bear15 in reply to

Thank you, I have never applied for benefits just on good days, I feel such a fraud even applying.

in reply toBear15

You mustn't think that way. If you apply, you can't make them think you don't believe you are worth their attention. You most definitely are.

miccika1 profile image
miccika1

See also ifc you could xut down hours, if your employer would let u work half time. I realized that work keeps me out od depression and manage by taking a nap mid day. When im always at home i don't get much better but i additionally get depressed. Think of that aspect too.

Lupiknits profile image
Lupiknits

If you haven’t seen this already, here’s the Government information gov.uk/pip . For some reason that is an early morning attempt at a link. If it doesn’t work, the words help!

I found a Welfare Officer from my local Council very helpful and knowledgable about how to phrase the application. It has to be based on your worst day and can be tricky.

Your employer does have an obligation under the Disability Discrimination Act to make reasonable adjustments too.

Hope it goes well. PIP is not means tested.

Hamptons profile image
Hamptons

I was similar to you, single, struggling with work. I rang DWP, this was easy and efficient. Then I went to CAB to fill in the form in, they were brilliant and really pushed in their questions. My form would have been all ‘oh it’s not that bad’ had it not been for the woman there really probing. You have to think worse case and then some.

The interview was fine, two very good people. The questions reflected the form, it they asked open questions so you could give scenarios and the story, rather than. Yes or no answers. It did not feel hostile.

Waiting to hear if I got it. But, have been told most first applications get rejected so am aware I may have to appeal.

I cut my hours which is financially hard but has made life 100 x better. I have energy at weekends and work no longer feels like my life as all I was doing was sleeping n work.

You can speak to your employer and have reasonable adjustments, ask for Occupational Health assessment to inform them and look at Access for Work and how that might help too. Once I started admitting I was struggling I found there was good support to help you work.

Good luck.

Sammi19 profile image
Sammi19

Hi Bear 15

I have just applied for PIP. I was on DLA for life but this now no longer exists and we are all being converted over. Previously DLA was an assessment on the illness you had where as PIP is how your life is affected by your illnesses and your claim then assessed on that.

I went to the CAB where they helped me fill the forms in as you have to put special ‘descriptor’ sentences and words in to gain points which then put you hopefully into a band where you will be legible for PIP. I believe it is a rather harrowing process and from what I’ve experienced so far you lay your soul bare to the world and it’s mother but if it means I get some help then I have to swallow my pride and accept how ill i am. Looks awful written down or even spoken about. I hate this illness sooooooo much. Don’t do my usual of oh I can cope as you don’t get anything for that. Please ask if you want any other help. Xx

loopy-lou profile image
loopy-lou

I was on DLA indefinite and then have had to apply for PIP twice. I was successful on each occasion without an assessment. I filled it in myself with the help of using a site benefitsandwork.co.uk/. You do have to pay to join the site but I found it to be invaluable. It is not a form to be filled in quickly, although at times you think you can. I photocopy the form and do it in rough first and then re do it on the form to be sent off. I have always kept a photocopy of what I send off, plus I have sent it tracked to be signed for so I cannot be told it hasn't been received. Fill in the form as you are on your worst days, as it is those days we struggle with.

Explain your difficulties in as much detail as possible, even if you are repeating yourself. Also, add as much supporting evidence as you can, from your GP or consultant etc. May I suggest keeping a diary from now, unless you have already so you don't forget anything.

Wishing you lots of luck with the form x

Karm profile image
Karm

To be totally honest when you do the forms and the assessment you have to make every thing or day is the worst. You can't make it seems as though I'm ok 2 days out the week. When it comes to these people they don't want to give you the benefit. And that's a fact. One word could mess up everything. You are not telling them lies but you have to show how bad things really are and there's no let up.

They will take "well sometimes I can't move " as "well I don't need the help" that's how extreme they take things. You have to push really hard for PIP as they don't make it easy I would suggest finding a citizen's advice advocate and one that is knowledgeable with these forms and the process of a mandatory reconsideration aswell as you will most probably need to do a appeal and maybe even a tribunal as they don't help you (DWP) to get you what you need.

Karm profile image
Karm

Always look up what they are looking for . You can find the info that is at the back of the form pip discripters online that tells you how many points you need for each type of question etc

Karm profile image
Karm

It's a very a very humbling and at times embarrassing situation especially when you have to do a fact to face as they will ask some very personal questions but to get what you need you just have to go with it, it's not easy but once you get into this process properly you will understand - it's like giving birth, before you had a baby would never want anyone to seen your body like that, but once labour starts your legs are akimbo and you deal with it! (Weird analogy but only one I could think of) lol

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