Claiming PIP (Personal Independent Payment)
I know that I’ve just written a blog post all about what I’ve been loving throughout the month of August, however I also received my PIP results back from the assessment I had just under 3 weeks ago and I would like to discuss them with you all.
Firstly PIP stands for Personal Independent Payment and it’s a benefit from the UK Government to help people with chronic illness/disabilities, it used to be called Disability Living Allowance but got changed in 2013 to PIP. It gives support and benefit to those who are in real need, however unfortunately for those like myself who has an invisible illness like Multiple Sclerosis get dis-regarded or falsely marked for what we deserve. Some people even get their allowance taken off them completely or certainly deducted because the government just assume they are ‘too well’.
I had applied for PIP not long after my diagnosis of Multiple Sclerosis and was rejected, which at the time I felt was a fair judgement because I felt I had really deserved the help really. I then applied for it again whilst I was going through this recent relapse (I have had about 4 relapses since being diagnosed in 2014 and all needed steroid treatment) after speaking with various friends, family and George I applied again. I don’t want to not work I just want to point that out, however since I’d say my relapse before this one I have struggled working full time and managing ‘my life’ if that makes sense? I was able to have a good time at work and use majority of my energy there, however when I got home I’d be so exhausted that I’d struggle to even do the basic things like cook dinner etc, I also felt like I wasn’t enjoying life… I couldn’t go out on a Saturday night past 9:30pm because I’d be too exhausted from work… If I had something planned on a Sunday (Day Off) then I knew that I would have to rest on Thursday. For a 26-27 year old I found it pretty difficult to adjust because I used to be able to do these things, I know they may seem small things to some but to me they’re big and all I wanted was just that little bit of extra time to be able to just enjoy life a little more.
So.. The PIP forms arrived and I started going through them… The only thing I can say about this is that it was really stressful. Having to write down every little thing about how my disability affects me was exhausting and challenging, especially because the questions were so basic ‘can you feed yourself?’ Etc.. I would normally have answered ‘yes’ for this, however the advice that I was given by family & MS Society was that I needed to write it down as if it was my worst day – so that’s what I did and on my worst day’s I really can’t take care of myself and I heavily rely on George my partner to help me.
Once the PIP forms were sent off I waited about 3 weeks and I received a letter informing me that they needed to conduct a face-face assessment about my condition and the struggles in which I faced on a daily basis. Again this was a stressful process, I answered the questions they asked with the help of George (definitely take someone with you!!) and within 45 minutes the assessment was over (I think in order for someone to assessment your daily needs and struggles surely it should be a little longer than 45 minutes?
Another 3 weeks past and I received my results from the assessment – I had been rejected for any help at all… Not that I’m surprised really, however angry because there are so many people in this country who don’t need help and they’re the ones who ruin it for the majority of people who actually need the help and who it would really benefit!! Like I said at the beginning I don’t not want to work.. I love my job and I love working… All I wanted was a little extra to help me have a slightly better quality of life.
I also feel very fortunate and grateful that we have this kind of system in the UK as I am fully aware that not many countries have anything at all, I’m just sharing my experience and my opinion.
I know this is a long post… However I want to go through their reasoning as to why I don’t need any help at all and dissect it and explain how things were from my perspective…. Here we go!!
“I have made my decision using the information about your health condition or disability including details of any treatment, medication, test results and symptoms”
Remember that phrase – this has been copied directly from the letter I received yesterday.
“As your needs may vary, my decision is based on the help you need most days. You said you have difficulties taking nutrition and managing therapy or monitoring a health condition, managing toilet needs or incontinence, communicating verbally, reading and understanding signs, symbols and words, engaging with other people face-face and making budgeting decisions due to relapse, memory loss, pain, blurred vision, anxiety and forgetful. However the musculoskeletal examination did not show any significant restrictions with your upper limbs and you demonstrated adequate cognition, memory and intellect at the assessment.”
Okay here’s what happened… I said that when I relapsed recently I lost the feeling and function of my entire left side therefore I was unable to carry out daily tasks myself e.g going to the toilet, washing and bathing. I did NOT mention incontinence. Communicating verbally can be hard on a daily basis because I forget what I’m saying midway through sentence and this get particularly bad when I’m tired or under pressure, like the assessment day… There were times where I’d turn to George for reassurance and he would help me with the phrasing, so for them to say that my cognition, memory and intellect was adequate at the assessment is a lie. I was stressed, anxious and worried, for them to also mention about my musculoskeletal examination didn’t show any significant restrictions with my upper limbs – When I got to the assessment room George took my coat off for me and helped me into my seat because I was experiencing a lot of pain in my back and arms, he also helped me up during the assessment, I had to move very slowly because of the pain and then before we left he helped me up again and put my coat on for me! I managed to complete a few of the exercises my assessor requested but not all and the ones I did manage to complete I did so with difficulty and they could clearly see this.
“You reported you are able to eat slowly and enjoy your food. Informal observations showed you were able to sit and stand without any difficulties, communicate effectively, engage appropriately and complete the fire register.”
I think this is the funniest section out the whole report!!! Firstly “I reported that I was able to eat slowly and enjoy my food” I didn’t say anything like that! What I did say was that yes I could feed myself, however I had to eat slowly and take breaks in between meals because either the pain got too much or I was just too tired – please tell me which part of that means I enjoy my food?
Secondly, “Informal observations showed that I was able to sit and stand without any difficulties” This just makes me angry, also what does this have anything to do with food and eating? Also again it’s a total lie – like I mentioned above when I got to the assessment centre I was helped out of the taxi by George virtually at the door, then a receptionist helped me through the door because I couldn’t use the turning door to get in, I then proceeded to the lift slowly and made my was up the the assessment reception where I signed the fire register because that’s just plain and simple Health and Safety (what if I’d refused or should George have done it?) and then we entered the assessment room where George helped me take my coat off and helped me sit down… That’s what really happened!! Also that I was communicating effectively and engage the assessor appropriately – I answered the assessor’s questions to the best I could and I would turn to George for guidance and he even answered some of the questions for me because I couldn’t find the words to answer!!
“Therefore, I have decided that you can manage these activities unaided, safely, reliably and independently for the majority of the days”
The only thing I have to say about this is… Read what I just wrote about what “actually” happened above.
“You said you have difficulties preparing food, washing and bathing and dressing and undressing due to pain. Although the musculoskeletal examination showed some restrictions as you reported no sensation to your left foot you have sufficient grip and functional ability to use aids. Therefore I have decided you may benefit from the use of an aid or an appliance to manage these activities safely.”
Okay, so they firstly say that “I can sit and stand without any difficulties but then they say that the musculoskeletal examination showed some restrictions” How contradicting is that? As you can see it also goes on to say that they have decided that I may benefit from the use of an aid or an appliance to manage these activities safely – but wait a minute.. I’ve been rejected for any help!?
“You said you have difficulties planning and following journey’s due to anxiety. However you demonstrated adequate cognition, memory and intellect at the assessment and you reported you can follow directions to familiar locations and are able to use public transport. Therefore no further evidence provided of any prescribed mediation for anxiety.Therefore I have decided you can plan and follow the route of a journey unaided and Independently for the majority of the days.”
Again… This is not what I said exactly… What I said was I struggle to follow routes that I do not know because I forget where I’m going and how to get there due to my first relapse where I had retro bulbar Neuritis I lost some of my vision so looking at maps or online whilst travelling is difficult because my vision hasn’t come back 100% – I mentioned that I could just about get on a bus if George was with me due to my anxiety from having 2 relapses on the bus.. For a long time I wouldn’t get on a bus as I was too anxious about it. I also didn’t leave the house for 2 weeks when I initially had this relapse due to my anxiety, when I saw my doctor about it she prescribed my Amitriptyline (used for nerve pain and also for depression and anxiety) and I was seeing a psychologist to help me deal with the anxiety – is that enough proof? All this was written down and mentioned at my assessment!
“You said you have difficulty moving around and stated the distance you can move between 20-50 metres due to tiredness, numbness and pain. Although the musculoskeletal examination showed you had some loss of sensation in your left foot you reported you walked from the car park outside the building to the lift area, stopped and used the lift then walked from the lift to the reception (this covers 100 metres) Informal observations showed you were able to walk 40 metres to and from the assessment room with a normal gait at a slower pace. Therefore I have decided you can stand and then move more than 50 metres but nor more than 200 metres, either aided or unaided. This is consistent with your medical history, informal observations at your face-face consultation, how you engaged with the assessor, the available evidence, the information provided about how your disability affects you and your musculoskeletal examination results. I cannot consider any help you need not covered by the activities for daily living and mobility including stairs.
…. (Name not included) However the person who wrote this letter or sent me this letter, was NOT the person who assessed me.
Okay so yes with help from George I said that I struggled to walk for more than 50 metres repeatedly due to pain and fatigue – to be honest it’s a difficult question to answer because they wanted to know how many metres you could walk consistently without having a break (who on earth calculates how many metres they walk etc) When we arrived to the assessment centre via taxi, the taxi virtually dropped us off outside the door where George helped me get out of the taxi. We got to the front door where a receptionist helped me through the easy access door, I then slowly with my crutches and George made my way to the lift and to the assessment centre. When we got there and I was introduced to my assessor then they marched on ahead of me and George… Yes I didn’t wobble because I was using two crutches and I was walking a lot slower – I don’t understand how they could say that I was fine when walking to them when the assessor had walked off ahead of us.. Unless someone else was spying on me?
So they’ve decided that just by “seeing” me walk to and from the assessment room (my assessor didn’t leave with us they were typing away on the laptop therefore someone else must have been spying on me) then that means I’m fine and I can walk 50 metres but no more than 200 metres. They didn’t see me when I was at my worst and I couldn’t get out of bed, George literally helped me to the bathroom. Nor did they see George having to carry me to the hospital when I initially had my relapse from the bus – because when I had my assessment I was on a slow road to recovery meant that I don’t deserve any help at all?!
This is the system we live in today!! And finally the person who wrote me this letter was NOT the person who conducted my assessment.
To those who are going through this I wish you all the luck, I honestly don’t know what we need to do just to get a little help – help we deserve in order to have a better quality of life.
I will be appealing this decision because the report written firstly isn’t the full truth of what happened in the assessment, secondly isn’t written very well and thirdly not from person who conducted my assessment.
I’m sorry for the long – winded post and I’ll let you all know how I get on with this.
Much Love always