Pip??: Hello :) I had my OT visit today, she thinks... - LUPUS UK

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Pip??

Anyac81 profile image
15 Replies

Hello :) I had my OT visit today, she thinks because my husband got fired for taking too many days off in the last year to help me at home I can claim PIP? I've taken a look online and I don't think I stand a hope in hell! It's too varied day to day, sometimes I cope sometimes I just don't.. how can I fill out a form that askes me about cooking for example, there are days I help cook dinner, there are days my joints are so swollen I can't pick up a kettle.. I can see the PIP person who assesses me calling me a big fat liar if they happen to see me on an ok ish day lol, had anyone ever heard of PIP for arthritis, fibro and lupus? Is it worth even trying to get help? :( x

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Anyac81 profile image
Anyac81
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15 Replies
PMRpro profile image
PMRpro

You fill the forms out as if it were your worst day! My granddaughter gets it for asthma.

Contact your local CAB - some help you fill the forms in or can tell you where you can get help. But it does make a massive difference having someone who knows what they are doing to help you!

Anyac81 profile image
Anyac81 in reply toPMRpro

Thank you :) it's all very daunting x

jayfer profile image
jayfer

The OT would be a great person to write a supporting letter, they know how much it affects you and you stand a better chance of being successful with their report . Good luck

bluebell99 profile image
bluebell99

I think you should go for it, but get help filling it in from Citizens Advice or your local council Welfare Officer. This link should help you too.

lupusuk.org.uk/benefits/

Always describe everything as if it is your worst day.

Gather your blood test results, clinic letters and any appointments for physio, and your OT. If any are not in your favour discard them. You may be able to get copies online if you have signed up to your surgery, or ask the receptionist for copies and say you will pick them up when they are less busy. This means they are not under pressure and will do them for you. There should be no charge.

Photocopy everything, the DWP have a habit of losing things.

If your husband is unable to find work and you are awarded PIP, it may be worth considering him being your Carer.

You have nothing to lose and much to gain.

Anyac81 profile image
Anyac81

Thank you, il give it a shot, il update on what happens :) x

misty14 profile image
misty14

Hi anya

So sorry to read of your problems because of your health!. So unfair your husband has lost his job because of it!. Two other reasons to contact Citizens advice is firstly to tell them what has happened at work as they have employment advisors who can help. Secondly they can also do a benefits check and make sure your getting all you can now you have a change of circumstances and loss of salary!. They have a good website with links to other organisations too. citizensadvice.org.uk. You can phone them on 03444 111 444 Good luck and keep us posted. X

geodoug profile image
geodoug

Definitely worth it, I even appealed to the justice system to get my wife's approved after a penpusher at DWP said no. You go for it. Good luck.

Kali profile image
Kali

Hi Anya,

Did the OT prescribe any equipment for you to use to help you function? If you have rails or equipment such as a perching stool etc this counts as points towards your PIP claim.

The best person to write or help you write is an OT as daily function is their forte. If you've needed your husband to help you then it sounds like you have a good case for PIP. There are 2 domains; mobility and care, and there are the 2 levels of standard and enhanced rate depending on how many points you get.

You will need to write about your bad days .. do you need help to go from lying to sitting in bed? Can you open your medications without help on days when your joints are swollen.. if you drop them can you pick them up? Do you need help to get in the bath or shower?

I know that the form is daunting and there is a time limit for completion but I think that you can ask for an extension.

A good start would be to write down on rough paper each domain as listed on the pip form and then write down the difficulties you have. Just try to do one or two parts each day.

You also should both have a benefits check to look at whether you can get things like ESA or council tacpx reduction etc

As Lupus is not a well known condition many people don't understand the effects and how much one person with lupus can vary from another and that includes health professionals. It is worth applying for though,

Good luck and let us know how it goes xx

Anyac81 profile image
Anyac81 in reply toKali

Hi thank you for all the info :) yes the OT has had to make adaptations to our home to help me manage, the very confusing thing is my diagnosis is fibro, arthritis and subacute cutaneous lupus, but something is affecting my heart and lungs, this is more in line with full on lupus but my bloods are negative for that, it's only in my skin apparently so they are all scratching there heads lol x

Kali profile image
Kali

Hi again Anya

The PIP form will ask you if you need any aids to complete the tasks. These will add as points towards your claim .

It's really important that you record the days when you are not at your best.

Have you asked your OT whether she can help?

K x

Anyac81 profile image
Anyac81 in reply toKali

Hi, she's said she will be writing a report to support that I'm not fibbing, it's such a huge shame the system was abused by too many now they think everyone are telling porky pies lol and it's going to be tough going but we're going to try :) my Gp has also written a supporting letter so I'm hopeful, I've just heard so many negative things about the assessment x

Kali profile image
Kali

I have some experience in writing these forms as I'm an OT who happens to have lupus. It is a much tougher form but you have the backing of your health professionals. I successfully appealed a decision for someone with another condition recently. As health professionals we would not support someone in a claim if it was inappropriate but would give guidance towards other appropriate methods of support. x

Anyac81 profile image
Anyac81 in reply toKali

My OT has been so supportive too :) I'm sure I'm probably panicking about nothing, your very right, I'm sure Atos or whoever does the assessments now won't take the information from professionals lightly, fear of the unknown with me lol x

Kali profile image
Kali

Definitely.. try not to let it worry you as that won't help you for sure. Keep us posted x

Anyac81 profile image
Anyac81 in reply toKali

Thank you I will :)

Hopefully sharing my experience with pip will help anyone that may be in a similar situation, I took the advice on here and contacted citizens advice, they have someone in mind that has experience with the form that they think can help, I noticed it askes the same questions but in a different format sometimes, very confusing! fingers crossed x

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