Hi all, So I am 26 years old and have been diagnosed with relapsing remitting MS for about 3 years now, I was lucky to get a quick and reasonably simple diagnosis, mainly due to my mum and her mum having both had MS so I was very familiar with the symptoms and had symptoms that were virtually only related to MS (L’Hermitte’s phenomenon for about 6 months).
I am now on treatment (copaxone 3x weekly) and haven’t had any new lesions since I started the treatment (woohoo!!), I recently applied for PIP mainly due to the pretty crippling fatigue I experience, along with numbness in hands and feet etc. etc. (You all know the deal), I also have depression and anxiety and included this in my application.
I had an assessment interview over video chat and received my outcome last week where I was rated as a zero on all categories but one even though I made it clear that on bad days I can’t actually leave my bed apart from going to the toilet, let alone walk 200m.
Apparently because I could answer the interviewers questions I ‘do not appear to have any cognitive impairment which could impact your ability to carry out daily living or mobility activities.’ Despite my brain fog which is exacerbated in flare ups. Additionally because I can drive an unadapted car I ‘should be able to complete daily living activities independently and reliably on the majority of days.’
Long story short I am absolutely broken by my assessment, I feel absolutely undermined and overlooked, I explicitly detailed my difficulties on a day to day basis and how badly I’m effected on my worst days during flare ups. I feel like I’m not being taken remotely seriously and every time I try and read my assessment letter to prepare for appealing I break into tears.
Has anyone else experienced this? Obviously I’m going to appeal the assessment but I don’t even feel comfortable speaking to any of the assessors anymore because of how uncomfortable and idiotic I’ve been made to feel.
Any advice would be greatly appreciated, thank you.
Oh love, this is horrendous!
PIP assessors are known to lie to stop the right people getting the right outcome.
Glad you are appealing. If that fails, take it to Tribunal.
Sorry for what you;re going through. Join benefitsandworks.co.uk It costs about £20 to join but their guide talks you through every question and the appeal process (I believe) I recommend it to everyone!
Sorry that you feel “undermined and overlooked” but under current criteria, they don’t regard you as far gone enough to qualify. One day, unfortunately, you possibly will. PIP is intended to help those who are struggling to live independent lives, so if you can walk, drive and work most of the time, PIP doesn’t yet apply to you.
The system certainly isn’t perfect, as their criteria don’t allow for RR conditions and they take the Remitting case as your baseline. Unfair on you but currently there is no mechanism for only paying out when you are relapsing. Maybe there will be more joined-up ways of detecting and approving on an intermittent basis.
Sorry, Bouds, but that isn’t helpful for the OP. “PIP assessors are known to lie” is not a constructive starting point. Let’s keep it objective and concentrate on practical ways of challenging the ruling, or at least, having a better understanding of how it was arrived at. Having MS as a label does not entitle anyone to PIP as it is based on functional capabilities, so setting realistic expectations would be a good starting point.
@kwiljodish, how would you compare your functional capabilities with that of your mother or grandmother?
I’m sorry too GCCK…but what I said is true as many have found and discussed on this and other forums. I said this to the OP, to let her know her situation is common place.
Her reduced ability to walk, drive and work on her bad days, equal chronic DISABILIITIES.
Sorry that you must have misunderstood here as I didn’t explicitly state how I suffer at any point, so I’m not sure which criteria you have applied to me.
I am struggling to live an independent life and struggle substantially day to day not that I particularly wanted to disclose specifics here, but thank you for your input.
I work full time, I can drive and I can walk the length of 2 double decker buses with a walking stick. I receive the standard level PIP for living (nothing for travel getting about etc.)
kwiljodish, get that appeal under way and be ready to go to tribunal if you have to. Have a detailed note of how your Copaxone is administered (and having the packaging to hand wouldn’t hurt) ready, and any other medication or items that you have to use regularly; put together a journal setting out a week in your life, day 1 waking up, symptoms, how you feel, pain levels out of ten, not being safe to use a regular kettle - all of it. If you have anyone who can go along with you as an advocate, rope them in immediately.
Good luck with the appeal.
I don’t have any personal experience of this but I see that the MS Society has a helpline for benefits etc. Try giving it a call? The Society itself has campaigned on benefits for MS people so I imagine they could be of some help to you
I know from others that claiming some benefits is a total nightmare and the questions are far too simplistic- I exaggerate but the fact that you can walk 100m is interpreted as meaning you are totally fit for work. I believe there is an art to answering the questions !
Just thinking further since my earlier reply. I would definitely contact the MS Helpline ( number on the MS Society website) and Citizens Advice Bureau who will also be familiar with the types of problems you are facing.
Also check out e.g the Fibromyalgia Action UK website which has sections for FM people to share experiences etc including with claiming benefits. I know someone who has Fibromyalgia ( a chronic and debilitating condition) and has faced similar problems with getting benefits. After persevering and getting reviews the final outcome was ‘success’.
In a 2018 MS Society Report - 83% of MSers who take their case to tribunal are successful.
The MS Society has been and continues to campaign on the inadequate nature of Assessments for MS people and as it says on its website - PIP assessments aren’t fit for purpose.
You are not alone in the problems you are facing and as many say, the whole assessment process is frustrating, demeaning, stressful- basically not fit for purpose