PIP Assessments For Psoriatic Arthritis

Hi Pippie 

No i didnt realise i could look at the scoring, oh well i will just have wait to see if i get it or not. Thanks for the info 

Thanks sheila 

 

Hi Sheila how did your appeal go ? i've just put in one today, my husband had the standard rate mobility yet when he told them he's been diagnosed with Psioratic Arthritis which has made his mobility worse, he's lost it

Hi Paula,

my appeal was successful, so I now get higher rate for care and lower rate for mobility, it's odd that Pippie received it the other way round lower for care and upper rate for mobility but PsA is a strange condition which affects us all differently. I was retired from my job on grounds of capability due to ill health in Oct 2014 yet the pension provider refused my application for ill health retirement and 2 subsequent appeals. Another battle for me, as if life isn't hard enough. I think because it is a rare condition that not enough is known about it and that's why things are so very hard. It seems that only recently the medical profession are realising it is not the poor relation of rheumatoid arthritis - I mean no disrespect to folk with RA. If I can be of any help please respond or ask your husband to. You sound like a caring supportive lady, we need that. My husband is fantastic, I feel extremely blessed. Best wishes x

Thankyou sheila how long did it take to be sorted ? I'm at the mandatory reconsideration stage at the moment. I am so angry he was given 10 points for mobility when he first claimed when he hurt his back and now he's got worse with PA they've took it off him x

Hi Paula,

okay, I had 2 separate incidents which I will give you as much info as I can remember:

1. 2013 - applied for DLA (pre PIP days) I was awarded lower rate mobility, nothing for the care ccomponent, or whatever it was called then. My trade union rep thought this was very unfair as I had been confined to a wheelchair at times during 2012-13. I too went through mandatory review without success so I went to tribunal. The outcome of which was successful, the process was much better than I anticipated all I had to do was be completely honest. The ttribunal panel consisted of 3 people, one was a clinician, can't recall what the others were. I received their decision on the day.

2. Earlier this year, when PIP replaced DLA in my area, I was awarded upper rate care component but nothing for mobility. I went to mandatory appeal, attended a medical and received a positive outcome within 6 weeks.

Paula - 2 things to stress - I received loads of support from my TU rep and Disability EEmployment Advisor from the local jobcentre. You can't do this alone.

Send lots and lots and lotsof eevidence, rheumy reports, GP letters, stuff from PAPAA and other national charities. Even if your appeal has been sent in, keep sending evidence, just mark it with your reference no. I'm not going to fib, I spent lots of time and energy doing this. DWP quite correctly are rigorous, it's public funds after all.

If you would like my email address please pm me; I will do my best to help. PsA overwhelmed me, I needed and received help and it will be my pleasure to pass this on.

Thankyou so much sheila that's very helpful, we've been to the jobcentre today and asked about a disability employment advisor and was told that they can't help with this. We're going to see our gp tomorrow to aak him to write a letter for us, I've also got an email from PAPAA and a copy of their Web page. My daughter is now writing a letter explaining what she see's her dad go through on a daily basis. I'm going to phone his rheumatologist helpline tomorrow to see if they can give him a letter. I just hope it's enough, the both of us are really down and depressed at the minute, we could do with some good news.

I have no idea how to pm you lol I'm new on here.

Hi Paula,

click on the little grey envelope, top left under my name. That way you can send a private message which will be seen only by me. We will be able to communicate easier rather than a public forum. Disappointing about your jobcentre, perhaps try again and hope that you get someone more helpful. The stuff you're doing is really positive, I hope someone else on this forum may suggest other things to help you both.

Good evening Sheila

I have just been reading this thread as I’m looking for advice. I was diagnosed with PsA 2 years ago I take methotrexate and inject Humira and take strroida and have done since I was diagnosed. During this period we lost our daughter to Cancer after a 5 year Baylor she was 11 I’ve struggled to keep up with appointments and medication as it was so difficult juggling everything. I do receive middle rate pip but my PsA is in my feet toes and heals - knees - hip right hand side and fingers and thumbs right hand side that are literally twice the size as my left hand I have shocking fingers nails they are chronically pitted. 

I can’t walk without a stick and my wife’s help and I’m 41 I don’t know what to do or who to contact to get help !!!!!

Any advise if your still on this thread would be amazing thank you.

David 

Hi David 

Sorry to hear of your loss and your on going medical issues. There is some light at the end of the tunnel, You can ask for a re assesment or you can make a new application on the grounds that your condition has got worse since your assesment. I think your best approach will be to make a new application, because even if you do not get a higher payment the payment your already getting can not be withdrawn until its term is up. If you go for re assesment option it depends how long since it was awarded also they could change the amount up or down, So best option again is fresh claim. 

Hope this helps 

Robert 

HI David,

I would make a new application as Robert suggests rather than reassessment because a benefit could be decreased/increased. One thing to remember is that Atos Healthcare who undertake the assessments are not rheumatology experts. They are working through a script - the person who you see during the assessment then sends the information to a decision maker. Remember to support your application with as much supporting evidence - copies of letters, test results. Include a personal statement written by your wife. Do you keep a daily diary? I do. I record how I feel, pain level and mobility plus I record how much medication I take. Includes also, all physio and OT appointments, etc. A daily diary is a great piece of evidence not only for these assessments but for yourself too, Finally, have you spoke to PAPAA? Very helpful. Good luck, David.

Hi Fran,

if you get in a fluster when talking about yourself, as I do, make notes beforehand. Very useful as there's nothing worse than leaving such an appointment thinking "oh why didn't I say that?". Please read through my posts to Robert and Paula above, if you want any further help, please ask away!

Hi Fran yes i was awarded PIP. The interview is all about you and how you cope on a daily basis. I took all my notes with me just in case they didnt have them all, They will ask you to do some basic exercises/movements If you are like me you will have good and bad days, However do not feel you have to do them (the more you CANT do the better. Just tell them you cant or it hurts too much to do it. Explain how your medication effects you how you have to use painkillers to get through the day etc. Ensure that the interview is within their guidelines IE  there is a distance you are allowed to travel to it if it is more than their guidelines then inform them and the same for the time  it takes to get there. Any other information you need feel free to ask 

Hi sheila, just an update. Had my PIP assessment today, not as bad as I thought it would be, hopefully I answered the questions OK. The interviewer was really nice, put me at ease straight away. Fingers crossed that I will be awarded PIP. 

Hi Frances so was it just a series of questions and them asking you to do a couple of movements as i said ?

Where did you have to go for it?

robert 

Hi Fran,

well done, lady. We build things up through fear. I'm glad that you felt relaxed. I hope you were well prepared, I'm sure you were. That gives us confidence. You will have your answer soon, I hope it's favourable. Please let me know x

Hi Robert, it was exactly that. Quite a few movements I couldn't do, as I was in too much pain. I had to attend in Cardiff, but my daughter took me, so from the multi storey car park, it wasn't too far to walk. 

Thanks sheila, I will let you know the outcome. It's only speaking to you and robert, that I wasn't a bag of nerves. Many thanks to you both.xx

Glad it went ok for you, hopefully you should get it 

You are most welcome! I would me so lost and afraid without this forum! All the great advice, support and humour we share! I feel I've made real friends, you know you don't have to explain that I'm really ill when folk say you look well (facially at least) the crutch, walking stick and wrist braces are a giveaway! It's only our nearest and dearest who know about the reality, the guys and gals who help us out of the bath or shower, the ones we wake, weeping in the night, the ones who share the horrible flaking skin, no matter how well we bandage, they're the heroes really. I only actually know 1 other person with PsA. She is attractive, great company etc but she won't enter into a relationship because of this illness, and I understand that completely. I hope my hubby doesn't leave me cos I too, would çhòose to be single. Actually, if that happened I don't think I could cope at all. Gosh that sounds unhealthy but my mobility is getting much worse, it takes me ages to get dressed now, there's a lot of fluid on my knees so the rotten things hardly bend. Socks, knickers and bra (perhaps will go commando 🙈. Elbows an right shoulder have joined the orchestra of pain recently and they just won't work properly

,when oh when will Stelara kick in? I'm trying so hard to get more mobile. Been receiving physio in hydro pool X2 per week for 6 weeks, certainly helps my mood. I'm going to continue this (now fee paying, have used up my NHS funded treatment. Sorry, Fran, I've gone off on a tangent. Best wishes all. Suggestions most welcome x

Oh I do so feel sorry for you (if you don't mind me saying). You sound a lot worse than me. Although I sounded like a complete an utter hypocondriac yesterday, when I was explaining to the interviewer my health problems. What I find with my family and some friends, is that they seem to think there's not much wrong with me, but as my rheumatology nurse said to me once, you look great from the outside, but it's  all your joints, which apart from my fingers doesn't look to bad, unless I went everywhere naked 😱. It's funny you saying you would never bother with anyone else if your hubby ever left. I too wouldn't, as I'm really embarrassed with the psoriasis covering my body. I was told once to take up swimming as a form of exercise, but one, I don't like the water, and two, I could never show off my body to other people. I'm waiting to go on to Aprimilast, when the hospital pharmacy decides to get the medication in, I've been waiting all week!! So I'm hoping these will work, talk about being a guinea pig. Would it be alright if I kept in touch with you, just to see how you are?  Take care, xx

If only people could feel just half the pain we had to cope with and the frustraition we have to cope with not being able to do every day things that most take for granted. I only have a small amount of Psoriasis on both of my lower legs, and i find given sunlight it clears up fairly well. Personally i have never let it control my life or what i do because of my skin condition. I used to have it really bad mainly on my legs lower back. but i will not that control me. The pain is a different matter i have no control over that and that does control my day and what i can and cant do. Thankfully i have my wife for support and she understands how the pain controls me.

Hi Robert, I totally agree with you. I sometimes think there should be some kind of support group for family and friends, so they can see what kind of pain I'm in. My partner unfortunately is disabled, so I have to try and support him, as well as looking after myself. My 19 year old daughter who lives at home is a godsend, even though she works shifts, she helps me know end, and always makes me laugh. Unfortunately my psoriasis covers most of my body, not big patches like it used to be (that's thanks to methotrexate, when I was on it). But the patches is gradually creeping up my body, it's already in my scalp, just hope it doesn't get to my face!!  I do get very frustrated though, my greatest hobby was gardening, but there's no way I can do that now, luckily I love reading. 

Hi Frances there are support groups out there not that i have used them. I also has it on my scalp. There is also treatment using sun lamps that help with the skin condition which can be done on the NHS. 

 

Hi Fran,

that would be great! I'm delighted to hear you are starting Apremilast soon. I believe it's been used by dermatologists for a while with fantastic results. I don't think it's been approved by NICE for PsA yet in England but of course you may be in Scotland or Wales where they are. That's the drug my rheumy thinks will change my life completely for the better but he is unable to prescribe yet. It's fustrating as I live 5 miles from the border with Scotland! I'm really keen to hear your views so please stay in touch. Best wishes xxxxx

Hi sheila, I live in Wales. Had a phone call from the hospital pharmacy,and can pick up  Apremilast tomorrow. Will let you know how I get on, don't know much about the drug myself. Hope your OK. Xx

I have psoriasis from top to bottom, and was diagnosed with the arthritis last July, the pain is really bad it sometimes keep me awake at night, I have to do stretches to try and get out of bed pain free, I take methotrexate and painkillers, but my fingers are terrible, I'm studying, but can't write for long, so I take pictures and complete in my own time. I have dla for another condition, but I'm afraid to tell them, incase they take it all off me, can anyone give me advice please. Thank you

Rachel

Hi Rachel,

bless you, it's awful. I was diagnosed in 2011, I'm a lot older than you, 52. My advice would be to inform DWP. If you want to talk privately, please send me a personal message by clicking the small grey envelope under my name. That way only you and I can see messages. Welcome to this forum, there's lots of good friends on here, we all have the same difficulties and you will get lots of tips, support and encouragement. Sheila