It was mid-morning on Christmas eve and I heard my letter box go from where I was, in bed of course, and this time of the year I was very excited because it could be a Christmas card or even a special invitation to attend a stores January sale spectacular so I couldn’t hold back my excitement so I got out of bed and went down the stairs to see a large brown envelope, to oh it’s a bill, it’s a summons, its important!! Looking on the back it was from Belfast DWP (Department of Work & Pensions), it was my PIP (Personal Independence Payment) assessment outcome decision. This all came about after my full and final diagnosis in August, I got told about PIP when I spoke to charity’s about extra support who guided me towards this benefit in which it didn’t matter if you were still working part or full time you could claim it and they also said I did needed to start this claim as this was the first phase if anything happened to me in the future to start the progress of the DLA (Disability Living Allowance benefit), I was a bit hesitant in doing this as I am a very proud lad who has never claimed anything and worked my whole life but I did make the call and requested an application form. The application “book” came through my door, I had a read through it and looked at all the questions and procedures that would took place and thought “ I can’t do this, what the hell are they asking me?” your probably thinking it can’t be that hard to fill out and send back, I was still in the grieving stage of being newly diagnosed with MS, my eye was still in recovery, my handwriting looked like a 3 year old’s, and off the back of this, my head was still all over the place and this application process seemed long and complicated, so what did I do I filed it, yep I put it my kitchen drawer and forgot about it.
I met up with my friend Keith a few weeks later for a coffee which we do on a regular basis as he has MS also and he asked did I apply for PIP which I replied yes but a can’t be bothered with all that hassle in filling that out then going to be assessed then waiting for ages then what I’ve read on forums their only going to reject it straight away anyway then have to appeal then still might not get it I can’t really be bothered with all the hassle I want to concentrate on getting better and back to work, he replied that’s fair enough but you do still need to apply as this is part of the DLA process as well which if you need in the future will speed things up when you really need this support, my friend Keith does a lot of work for the MSUK charity in Colchester so he said give them a call to see if they can help you out in any way to get this done and sent back, which I did, I had previously met one of the MSUK team at a previous coffee morning which my friend organises which gave me a bit of confidence to call them and they were really good, they arranged a time to go and see one of their team members on a 1-2-1 basis to help me through this application. I went down to see Ryan at MSUK who pointed out straight away that the application had to be submitted by the following week, well what a waste of time and sorry for wasting your time I give up with it, what I hadn’t seen was on the front cover they stamp it with an submit expiry date where it needs to be fully filled in and returned by that date otherwise its case closed, he said don’t worry just give them a call when you get home and they can extend it for a month so that was what I done with no problem.
He was brilliant, he went through all the questions with me each question at a time and fully explained the questions to me in regard to myself and how MS affects me in different aspects of my day to day living, this did take a bit of a while, well a couple of hours in fact but he was so accommodating and patience with me and in this time we built up a good bond and repour and made me feel very comfortable when I was explaining things that does cause me issues at home and daily life. At the end of the meeting he said he would see me again in a week and a half to go through the answers I had written and to go through the application to make sure I hadn’t missed anything and everything was done correctly so it could be sent off. I done this and got the application sent off, about 3 days later I got a text message through saying the DWP had received my application and would review this then arrange a face to face interview at my local PIP assessment centre.
A few days before my assessment I had a CBT (cognitive behavioural therapy) session where we focussed on going into this interview confident & focussed on holding a good conversation to fully get across all the symptoms, issues and experiences I am experiencing due to my MS and which I was prepared for. On the day of course, I was tired due to no sleep the night before but my dad took me to the assessment centre, he was going to wait in the café next door to the centre as I didn’t want him in the interview with me as I know him and my mum are worried enough as it is so him sitting listening to other issues he was not aware of I didn’t want to do. I walked into the centre and introduced myself to the receptionist with a smile which doesn’t take any effort to do no matter who you are or what you’ve got in my eyes, used the toilet and sat and waited until I was called in, the interview consisted of going over the questions in the application with some other questions on top of that so they can gauge exactly how your disability affects you in these areas which I answered fully and honestly with examples exactly to the point. The assessor then got me up doing some musculoskeletal examination for my upper and lower limbs including laying on a bed where at one point my knee nearly went through the plasterboard wall as I couldn’t judge or control my action even to which she replied be careful of my wall in a joking matter, I also done an eye test where she held up a board of letters in a sentence type format at a 3 meter distance which I done which she even replied “that was better than even I was expecting” well yes it would have been, she held up the board about a meter away from me, I still had my glasses on and I slightly closed my affected eye with optic neuritis in and read them out, my eye has been improving since it first went in March but it is still away from recovery and looking at something a meter away with my glasses and slightly squinting due to habit I should of done well at the test, but what she doesn’t realise is I can’t wear my glasses in the shower or in bed where I’m constantly up and down in the night for toilet visits but there we go, she proceeded with a few more questions then I left the centre and headed home. 3 days later another text message from the DWP saying they had received the report and would write to me in 6 weeks with the outcome and decision, this was on the 28th November so what I have been told about how long these things take I thought I wouldn’t hear anything until well into the new year, well that’s what I thought until I heard that letterbox go on Christmas eve, I knew they wasn’t going to send me a Christmas card so I opened it up with an anxious feeling, BUT before I tell you how I scored and how much money I was going to get let’s just go through the categories and possible scores:
Preparing food – 8 points
Eating & drinking – 10 points
Managing your treatment – 8 points
Washing and bathing – 8 points
Managing your toilet needs – 8 points
Dressing and undressing – 8 points
Communication – 12 points
Reading – 8 points
Mixing with other people –8 points
Making budgeting decisions – 6 points
Planning and following a journey – 12 points
Moving around – 12 points
So, in total there was 108 points to be scored across all categories and I scored a massive…… 0 Points!!!!!!!!!
I wasn’t angry I didn’t cry, in fact I burst out laughing as I took this decision as a complete joke to be honest. I have been on many forums, spoke to many people at MS coffee mornings and read many reports on MS charity’s websites on this PIP process and to be frank I was expecting this decision because it does sound like there is a particular pattern and route this PIP process goes down, which when you look at it from a different angle is putting people who are under enough stress and pressure already through a painful and yet another stressful situation, it’s a long drawn out process where if you take into consideration all the time with paperwork, interview’s and appeals that go into it this could be streamlined and save a lot of time, money and heartache for those people that are caught up in the middle of this which they haven’t planned nor wanted. I do not have any resentment at all towards any member who works for the DWP or PIP assessment interview board, they are under enough pressure as it is and only are guided by processes and directives which are set to them from above, I even filled out a comments card and sent it back praising the receptionist who was extremely friendly and was well chuffed when I took her name to praise her and the assessor who was very professional and treated me with respect in the interview.
I will be appealing because I do want another interview in which I will be asking the assessor a few questions myself as reading the report back from the offices in Wolverhampton I thought to myself “have I actually got MS” because after reading that report I felt like I am cured and am a fake and there’s nothing wrong with me, the report in my view is harsh, inaccurate to not taking into account some symptoms come and go, some symptoms are different day to day, some days I am confident some days I am not, some days I am tired some days I am not. My experience with PIP is not as how it should have been and for this I will be sending this blog post directly to Matt Hancock who is Secretary of State for Health and Social Care, and if you have had a bad experience or this process has affected you send him an email as well, the more people speak up will raise awareness of this issue to him.
Matt Hancock MP app
which is available on iTunes or Play store
My final message to yourselves is this isn’t a fair or easy process to go through but if you are going through it or about to start this process, yes be patient, be aware that the first decision will not be the right or correct decision but keep at it and get as much support behind you as you can through family & Friends, MS charity’s, field based mental health nurses and support workers, even if you email me I will try my best to help you out but don’t take it to heart because trust me there is thousands of people going through the same issues, and for people on DLA they are going to transferring you over to PIP when they eventually get round to clearing the back log so be aware this process is for everybody.
My final thought is:
A person may walk in with a smile but walk home sad
A person may walk in sad but walk home happy