PIP Assessment soon...: Hi all, I have my first... - LUPUS UK

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PIP Assessment soon...

steve61 profile image
20 Replies

Hi all,

I have my first PIP Assessment on the 27th, just wondered if anyone can tell me what to expect, I found it difficult to answer some questions on the application form as lupus is mostly an invisible illness!! Can you show the assessor photos or legs if swelled on the day? Not expecting to get anything but they can only say No!

My other issue I have is with work, my company aren't very helpful regarding my illness, and feel like they trying to push me out the door! Had quite a few absences with 2 bouts of pneumonia, joint swellings/fatigue/migraines etc..

I've asked for part time but they refused, had me in office Friday and asked for my permission for them to contact my doctor and send me to an occupational health assessor, I think they assume I'm playing on this ugly illness!

Cheers steve

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steve61 profile image
steve61
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20 Replies
misty14 profile image
misty14

Hi Steve

Good luck for your pip assessment on 27 th. Hope it goes well. Just remember tell them of bad days and no variables!.

Sorry your having problems with work. Lupus uk have leaflets that may help so worth dropping Paul Howard an email. Citizens Advice have employment advisors who could advise if you need any help after seeing occupational health at work. They also have a good website with links to help from different organisations and info as to your rights at work because they can't discriminate against you!. Good luck with it all, bad enough being ill without this added stress!. Misty.

Lupiknits profile image
Lupiknits

Misty's given some good advice there. Your employers may or may not think you are messing them around, but they are doing the right thing in involving ocupational health for advice, because you have a disability and by law they have to make reasonable adjustments, including part time working if needs be. Medical evidence will help them in this, and it's best to get your union rep involved if you have one.

As to the PIP assessment, I hope it goes well. The golden rule is to concentrate on how you are an your very worst days. No harm in taking photos as an illustration. It seems a bit of a lottery as to what your assessor may be like. All I can say is go for it. I used Welfare Rights at my Council to fill the form in for me, and they will take over if I'm turned down.

bluetit42 profile image
bluetit42

pip is about how your illness affects you personally and your daily life..its different to dla and using aids gives you points for example. do you need help putting on socks/shoes. do you need help getting in the bath/ shower. do you need help cutting up food. its these types of things that pip will be looking into when giving you awards. its best to get help filling in the form. i found the assessment very stressful personally. its like they are testing you every step of the way to see if you are telling the truth. lots of trick questions to catch you out.

good luck

Millie138 profile image
Millie138

The reply by Lupiknits is accurate regarding your employers.

With PIP, as everyone is saying think about how you are at your worst- what you can and can't do. This includes things you don't do because you can't face them because of how you feel. You need to think about how you are affected mentally as well as physically.

The healthcare professional you see will probably have no real knowledge of the disease. S/he is not the individual that makes the decision. S /he merely submits a report based on your interview and then a decision maker decides whether it is likely that you are affected in the ways that you state and the decision flows from that. It is a fluctuating condition so while you may not be affected for some weeks you may be very affected during other weeks. They will probably want to explore this and how it affects every descriptor.

If you are not successful you can ask for a mandatory reconsideration of the decision. If you have any Consultant reports or a supportive GP any further information is always valuable.

Good luck!

Buffy14 profile image
Buffy14 in reply toMillie138

I have just been for esa assessment and was given zero points despite having level 3 Lupus nephritis and joint involvement, on warfarin after 2 large blood clots deaf in right hear after removal of acoustic neuroma which is a type of brain tumour, I am on immunosuppressant drugs so high risk from infections , got meningitis last time I worked , nearly died , yet zero points and had esa cancelled now on job seekers , the doctor at my assessment was typing on her keyboard the whole time didn't even look at me , didn't know what ibandronic acid was , that's what I take for osteoporosis which I also have after 14 years taking steroids , the report was done by an obvious moron who claimed I had heard a conversational voice in BOTH ears and wasn't wearing a hearing aid , I had my ear drum removed in 2013 after a CSF leak from my surgery scar after the acoustic neuroma removal , after saying I heard a conversational voice in BOTH ears ( basically saying I had lied about being deaf despite having it written down on hospital letters) he wrote two pages later in the report that I had had my ear drum removed . Where I had said I would get pain after ten minutes doing a certain thing they put an hour , everything was an hour in my report , 4 times they wrote that I go to the supermarket and do a shopping it was pathetic, saying I drive 3 minutes to one place , I drive to hospital 30 minutes on my own , what do they want me to do walk everywhere , I would strongly advise having your assessment recorded as these people tell blatant lies and don't mention most of what you say .

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toBuffy14

Hi Buffy14 ,

Are you appealing against this decision?

Buffy14 profile image
Buffy14 in reply toPaul_Howard

Yes I am , I have sent off for the mandatory reconsideration, still waiting for a reply I will go to appeal if they don't change the decision and then tribunal

Buffy14 profile image
Buffy14 in reply toPaul_Howard

Got letter today saying they are not changing their decision and it is being passed to disputes department, I cannot appeal until I get another letter with a copy giving me details of how to appeal so more waiting, why send it to disputes if they have already decided they are not changing the decision is that to drag it out even longer before you can appeal x

babssara profile image
babssara in reply toBuffy14

Hi Bully 14. I have been going through the same thing only with PIP. She never looked at me though said I made constant eye contact. Said I lifted me handbag off the floor so was able to bend. I am now taking it to tribunal. At first I was defeated and thought I would let it go. But after a few days I realised that I was right they were wrong and I would prove it. Like you, I have all the hospital reports and investigations, the GPs letter of support. I have worked for 40 years, no benefits. I think in my hour of need, like you, we need some government support.

Stick with it. See Citizens Advice and don't let the b******rds win.

Keep in touch

Babs

Millie138 profile image
Millie138 in reply toBuffy14

Hi, I would strongly recommend you ask for a mandatory reconsideration and if need be go forward to a tribunal. I have today supported someone at a tribunal who went from zero points to 21 points and was placed in the support group. It is so common for what the applicant says to be totally ignored during assessment unfortunately.

Buffy14 profile image
Buffy14 in reply toMillie138

I got a letter today from the mandatory reconsideration saying they are not changing the decision but then it says it's being passed onto disputes department , apparently I cannot appeal until this has happened, welfare rights said I will get 2 letters saying they are not changing their decision and I will be given details then on how to appeal this will take another few weeks, has anyone else had this ? X

ferhana profile image
ferhana

Hi

PIP has 10 daily living descriptors and 2 mobility descriptors, you can find these on the web on the disability alliance website (free). Each descriptor has 4 or 5 levels of need with points attached, you get the points for one under each descriptor (hope my explanation is clear). Standard rate requires 8 points; enhanced rate is 12 points. Daily living and mob each are assessed separately.

You can ask for your assessment to be taped so you have a record, but this is likely to delay the appointment-just check. Definitely take someone with you, who should be allowed in.

The regulations require that you have to be able to do the activity repeatedly, to a reasonable standard and within a reasonable time. So being able to do it once (eg at the assessment) and then being exhausted for the rest of the day, means you can't do it. You can make this clear. That's why some people ask for assessments to be recorded as assessors don't always write what you say down. They can be nurses, physios or doctors but don't assume they know about lupus. Make sure you give details of all your aids & adaptations, you can get 8 points on daily living depending on what you use aids for. They do watch how you walk from the car park or indoors if they're doing at home and extrapolate how you'd walk outdoors.

With lupus it is a variable condition, so the 50% of the time requirement can be an issue for some, but think of it over a representative period.

As said by others, if you do get turned down, get some advice quickly. You need to do a mandatory reconsideration within one month of the date on the decision letter (late MR is possible if you have good reason for lateness, but better do it in time).

Wish you well

Jean52 profile image
Jean52

Hi Steve

I had my PIP assessment a couple of months ago, and I was really worried. As well as now having lupus, which I hadn't had diagnosed at the time. I've got quite a few disabilities and am registered severe sight impaired, and as soon as we went in the chap who was doing the interview said straight away that he was very sorry and surprises that I'd been asked to go. The interview went very well, and he was very nice. The whole thing lasted about half an hour, and I was told that I would be informed if I was required for a face to face interview if not needed would hear something within 2/8 weeks. I left feeling quite pleased at how it had all gone. A week later I received a letter saying I'd been accepted and awarded the highest rate in both components, and how much I would receive and also when my payments would commence. And so far so good.

We've now got our new motorbility car for the next 3 years, I'm absolutely delighted.

I hope that when you attend for yours your outcome is the same, and all goes well for you.

Good luck Steve, be p leased to hear how you get on.

All the best

Jean

Harry19 profile image
Harry19 in reply toJean52

That’s amazing Jean congratulations . Do you mind sharing some tips on what key points you shared with them .

Tubamags profile image
Tubamags

Hi, The most important thing when you are asked questions is to take time thinking about your answer. Be honest but tell them just how painful activities are. We are so good at saying 'I'm fine' when asked how we are. You have to throw this aside and open up. This is very hard to do but take your time.

I had my assessment back in May and I was so scared. Luckily I had an expert in benefits come with me and I felt supported though he didn't actually say anything. The assessor was very good, looking at me every time she asked me something as I am profoundly deaf and lip read. Have you got someone to go with you?

The wait after was the worst part and, as others have advised, if your aren't happy with the result you can ask for the mandatory reassessment and, if you still aren't happy you can go to appeal. I hope it doesn't come to that and I wish you well.

I will be thinking of you

Maggie

Buffy14 profile image
Buffy14 in reply toTubamags

Thank-you , I will let you know x

Buffy14 profile image
Buffy14 in reply toTubamags

Got a letter today saying they are not changing their decision and it has been passed onto disputes department apparently I can't appeal until I get 2 letters giving me details of how to appeal, i don't understand why they have said they are not changing their decision but then said they are passing it on to disputes are they just trying to make you wait longer before you can appeal x

Buffy14 profile image
Buffy14

The same thing happened to me 4 years ago , I was very ill and I phoned acas who told me that the process of employers writing to doctors take months , they said as I was so ill I would be better resigning and they would have to pay me a months pay , I did and since then I have been on esa which I have just had taken off me and been told to get a job , I am appealing the decision, I don't envy you claiming pip as the dwp are a nightmare and are stopping as many benefits as possible for sick and disabled people it is a disgrace the questions are deliberately made difficult and I was told if you say the illness varies you don't stand a chance , I was honest at my esa assessment and said it varies and they have said I am fit for work , get help from your councils welfare rights team and you can get information from the lupus UK website on how to appeal if you don't get it , make sure you appeal as you are entitled to it x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi steve61 ,

Good luck with the assessment. It can't hurt to show them photos of any visible symptoms you may have - the more information they have, the better.

If you need assistance with your claim, there is a great website - c-app.org.uk/

LUPUS UK also have a range of guides available for our members. You can learn more about these at lupusuk.org.uk/benefits/

Mandagee profile image
Mandagee

Not sure about photo s but you will b able to show them any swelling but you have to b able to tell them how the area that is swollen then effects you. I find it helpfull to keep a detailed diary for 10 / 14 days listing symptoms /feelings and the challenges there brought , listing all the things you needed help with when you needed help and who helped you or what you had to do differently or miss completely due to illness.I have to say the advisors i have met were thorough but fair.you can never have too much info and don't not say something because it's embarassing or you think it's silly.make a list of meds you take n how they effect you.what I will say is always give the worst day scenario because if you say some /most days I can manage ..... then they will use this as a base measurement to award points. and if you can get some one who knows you and u r illness take them along too.good luck and let us know how it goes.x

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