So I’ve been on PIP for just about 3 years, diagnosed 5 years ago but didnt bother with PIP as I felt I was managing my symptoms ok.
Initially I was awarded the Daily Living Allowance Standard rate and the Standard Mobility Allowance, then about 2 years ago I had a second assessment because my mobility had got worse, I was then awarded the “enhanced mobility”.
3 months ago I received a letter saying my 3 year review was due, so I filled in the forms and this time explained that I had now progressed to SPMS , and sent the forms straight back.
Today, 3 months further on, I get another letter saying I have to be reassessed by Capita ?
So in total this will be 3 assessments in 3 years, WTF is going on with these people ?
Do they think MS is like having a cold, it just makes you feel sh*t for a few days then just goes away.
Unfortunately this disability will progress not regress, why don’t they get it !!!
the joy of the new system unfortunate i do feel for you …
I had to go from DLA to PIP done my assessment and then i got a letter saying that they lost my folder and i have to re do everything …cutting long story short took me 7 months to be transfer from DLA to PIP , true they back paid everything but the money will never cover the headaches and the hassle .
You need to arm yourself with patience and patience and patience . A mountain of it
Hello, I haven’t posted in a long time but I suggest you contact Adele via this link . We In Wales are fortunate to have the ‘ My MS,MyRights, My Choices to help us …
They did do shorter reviews to get more applications through. I am sure now although i know its a pain you will get it quicker and for longer. did you actually tell them your mobility was worse so if you did then they would have reassessed you.
its a pain but the worse thing is you have progressed sorry to read that.
They do get it, but it was the way it was done at the beginning and was fraught with problems which caused a lot of people headaches, but all i know now is the people having to go through it in my area are being dealt with quickly and efficiently now they have the processes properly in place.
My friends uncle who is schizophrenic had his dealt with quickly and got both for life well 10 years i think. Others have been dealt with fast too so hopefully after 3 years your area should be better equipped to deal with you. Mind you the 4 people i know recently non had MS all had mental health issues and with DLA they would never had gotten it, so thats a huge change which is welcomed i think personally.
I did mention on the review forms that I had now gone to SPMS.
I’m sorry now that I did.
It’s like we have to keep proving ourselves.
I also find it very difficult explaining how the MS effects me, I think unless you have MS you cant really take on board the reality of it.
I can talk for hours about MS with my sister because she also has it and fully understands even the tiniest of things that if affects, but sometimes when someone who hasn’t got MS ask’s me how I’m feeling or how it effects me I can see almost straight away that my explanation isn’t sinking in or making sense.
It’s like as if they are thinking “well you look ok, you can drive and you even go to work” .
If only they could fully feel the effort it takes to get out of bed in the morning and get dressed, then shuffle 10ft from my front door to the car, the concentration whilst trying to walk “normally” without tripping over, stay standing upright for just a few minutes without wobbling and swaying while talking to someone, the constant feeling in my hands that I’m wearing gloves, the embarrassment of having an “accident” just because you couldn’t get to the toilets quick enough.
Yes I can drive because I’m bloody sitting down, yes I go to work because (thankfully) my company have found a role that allows me to work from a desk sitting down, I can work the hours that I feel I can physically do, I can take breaks as and when I feel I need to, they’ve put a parking space literally outside the office door, they’ve even stopped work on building a new Lab because they think its to far away from my office for me to walk to.
I’ve been so so lucky when it comes to my job, and also that my wife and son are here for me, but no matter how I try to explain how the MS affects me I sometimes feel like I’m being interrogated, especially with these PIP assessments.
Perhaps what might help is a change in perspective. Instead of battling with the assessor to explain your physical problems, think about how to word things that will explain how you fit the Descriptors within each Activity. Think of it as though you are working with the assessor to allow them to understand, not your disability, nor your MS per se, just how you fit the Descriptors.
If you look at the table: https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf and see exactly where you fit into each Activity, then find the words to explain what you have trouble with and why. You are an excellent communicator, and this sometimes may mean you go into combat when explaining your disability for these forms. Think about how you word things, even downplay your intelligence a little, use simple words and terms as you explain your life to the assessor.
Your aim is to make life nice and simple for the assessor. If they can go through your form, tick a box that says you fit X Descriptor and have provided evidence of this, then you’ve made their life easier.
Make sure you have included evidence that backs up each one of your statements. As we’ve detailed before, it’s your words plus the written evidence that counts. Don’t forget that you can include photos. And most important, remember the words, reliably, repeatedly and safely.
Having had previous face to face assessments should mean that you wont have to have another.
It’s truly a bugger that you have to do this again and again. Hopefully this time will give you a) an assessment on the paperwork rather than a face to face, and b) a longer award.
Just had my PIP assessment which seemed to go ok, but you can never tell ?
I did feel that some questions were irrelevant to MS, bordering on trying to catch me out.
For instance I explained that since progressing to SPMS my hands have got worse in the sense that they both feel like I’m wearing mittens all the time, making it difficult to hold/ pick up things or undo buttons, zips,clasps ect.
The assessor took notes of this and how my other symptoms affect me.
Half hour later she was asking about how I am communicating with people, if I feel I can talk to people ect ect, then she asked if I used a mobile phone, which I answered yes, then it was do I txt people or use the phone to surf the Net.
I had the impression that she was clearly prying to see how I can use a mobile, yet my hands feel “gloved” !
I might be wrong by I felt it was a question used to trip me up ?
She did ask if I have any problems with communicating with others, which I dont, but I found it odd that she asked if I could txt on my mobile and do I use the mobile to surf the Net.
What relevance has that got to do with having MS ?
I have problems with my hands feeling completely “gloved & muffled”, so picking things up and holding objects can be an issue on times, so to be asked if I have a mobile and do I send txt messages felt a bit like an ambiguous question, especially some 30 minutes after explaining the issues with my hands.
As you have explained all your difficulties with your hands, the assessor was basically trying to trip you up.
So if you answered yes you can text and use your phone to surf the net, then in her eyes you were telling porkies about your manual dexterity. So yes she was trying to catch you out.
Hi I’m reading these post with interest I got turned down for pip about 18 months ago but unlike the posts above I have relapsing ms. I’m now thinking about reapplying because all my symptoms seem to be getting worse my balance,fatigue,walking like if I’ve just spent the last 2 hours in the pub. Looking at the link about how they score you and from my last assessment I think I could score higher this time. And I now know how to do my assessment I need to tell them as if it’s my worse day.
i do feel for you …