It’s been over a year since I’ve written a blog. Should I apologise? Has anyone noticed? Does it even matter? Maybe not..! I created this blog because I felt I had something to say about disability, my experience of it and the world that we all live in. It’s been far too long since I last wrote something, and although I don’t feel like I owe anyone an explanation let’s just say, shit happened. Some good things, some hard things but all of them were things that didn’t feel appropriate to write about until the time was right. That time is now!
Full disclosure – this blog post is about the process of applying for the disability living benefit, Personal Independence Payment (PIP), transferring from the older version of Disability Living Allowance (DLA) and the physical and mental damage the process put me through. Spoiler alert: there is a happy ending and I’m so glad to be able to say that I didn’t lose it. The point of this post isn’t to argue my own case but to explain the process to those of you who may have heard the headlines about the number of disabled people deemed ineligible for the benefit and losing their motability cars and money for carers and assistants. I aim to explain what the process was like for me, having to fight for what I needed.
It’s a long one so maybe make a cup of tea before diving in..!
The drama and trauma of having to reapply for my disability benefit was something I knew was going to happen at some point ever since the Government announced it’s plans to change the Disability Living Allowance (DLA) over to Personal Independence Payment (PIP) back in 2012. Since the announcement, I felt a constant niggling sense of unease. My mum had applied for me to receive DLA soon after being diagnosed at two years old so the thought of having to reapply for this, and potentially losing something when I had no idea what life without the support was like, was daunting. The terrifying stories – stories from friends and in the press – of reapplying and losing the support left me feeling like a rabbit in headlights, unsure of which direction to turn and how to ensure I got the result I needed.
As a child, I was given a lifelong award to help with the additional costs that I would incur due to the condition I was born with and the impairments that were never going to disappear. Let’s face it, I was never going to sprout an additional 2 feet and my joints and skeleton were always going to look and function differently to the average Joe on the street.
When Mum applied for me, DLA came in two parts; the first part was for daily living which helped with assistance that you might need with everyday tasks such as dressing, eating, washing etc and the second was for mobility. This financial support could help with paying for adapted clothes and implements a non-disabled person does not require, paying for support needed to get from A to B or paying for mobility aids such as wheelchairs, crutches etc. At the time, it was decided I would receive the lower rate for daily care and the higher rate for mobility.
Fast forward to February 2017. With a thud a one page letter arrives from the Department of Work and Pensions informing me that my DLA will be ending in four weeks’ time and if I would like to, I could reapply for PIP. To do this I would need to call up and request an application form. If I chose not to reapply, the money I currently receive would be stopped and the car that is adapted and paid for with the money I am receiving would need to be returned within six weeks.
My heart literally stopped.
As I said, I knew this was coming so it wasn’t a surprise but I had heard so many terrifying stories of people’s unsuccessful applications. Like someone who had lost both their legs and had not been deemed “disabled enough” to receive the level of PIP that meant they qualified for the motability scheme and lost their car. And countless other stories like this. I was petrified of this happening to me.
To me, the most scary thing about all of this was losing my car. My car is my lifeline. It’s almost equal to my electric wheelchair; it’s my legs and way into the world. It allows me to leave the house and explore. It means I can live my life with as much independence as possible within my own capabilities. It means I can work and be a productive member of society and feel like I have purpose. Without my car everything would be harder or near on impossible. Public transport is just not accessible enough to make it a viable option. In my local area taxis are expensive and the chance of booking a wheelchair accessible taxi on a whim or within school time is zero. My wheelchair doesn’t fit into other people’s cars so the option of catching a lift with a friend or family isn’t an option either. Getting to work on time, buying food supplies, going for a swim or maybe seeing friends are all taken away from me if my car is taken away.
You see why the panic started to set in.
A week later, after having called the number from the letter and confirming I wanted to apply for PIP, my application form arrived in the post. This time there genuinely was a thump as it arrived because the form is HUGE! It’s 40 pages long asking questions that force you to dig deep into the pit of things you’ve buried and decided not to think about and just get on with life. If you’re new to the blog and don’t know me personally, my first post should give you a flavour of what I’m normally about: http://theviewfromdownhere.info/2015/02/09/welcome-to-the-view-from-down-here/
Thinking about what I can’t do and what I do differently to everyone else is not condoned by everyday Sam. I currently have quite severe arthritis in both my hips and am moving fairly swiftly towards a full replacement of my right hip. My condition is worsening; I’m in pain every single day and am medicated every wakening hour. That’s the truth but if I’m honest it’s not something I ever say out loud or admit to myself. This form forced me to explain my condition, how it affects me and what the near future will look like. Advice from friends and people I know who had gone through the process already was to go into as much detail as possible. Don’t assume the assessor will read between the lines or have an understanding or knowledge of my condition. With this in mind, in order to avoid doing myself short, I couldn’t shy away from any detail.
How did that make me feel? Honestly? Crushed.
I spent a week writing notes on every aspect of life. Cooking and making food. Washing and bathing. Dressing. Mobility and how I get around. I asked friends and my family to tell me about the things they noticed that I do differently or need support with because I was keen to avoid missing something out. My friends are honestly the best bunch of bloody rockstar girls anyone could ever imagine and threw themselves wholeheartedly into helping me. “Oh Sam, remember you find it hard opening tin cans and need help” “Remember you can’t walk upstairs so when I lived in a flat you had to drag yourself up them and were really tired afterwards” “You can’t reach things that I can” “When you walk you fall over all the time” “You walk slow and it really hurts if you walk too far” “All your clothes need to be adapted” “You can’t reach the shower head” etc etc etc.
After a week of going over all of this and ensuring each of the 40 pages, plus the additional pages of evidence I submitted, were complete, the feeling was not one of relief. My thick skin and hard exterior was cracked and broken. I felt different to my friends, vulnerable and in need of help, someone to be pitied rather than someone with purpose and potential. The form doesn’t ask what you’re good at, what you bring to the lives of those around you or what is good about your life. It asks you about all the hard things, the things that make you different to those who aren’t disabled and asks you to focus on your medical condition.
I cried for a night. Had cuddles with the people I love. Then I pulled myself together, albeit with a few dents and knocks to the armour.
Two months later, I receive a letter informing me I needed to attend a face to face assessment. The bottom of my stomach fell out the other end and I burst into tears.
This isn’t me but this is where the process had taken my mental health to. Between submitting my form over eight weeks ago to the point the letter arrived, I had done a good job of putting the whole thing to the back of my mind. It’s a skill I developed at a very young age when I knew operations and painful things were looming on the horizon; better to try and be in the moment than let worry overtake every waking hour. Good trick but when reality hits, it hits hard!
I’m proactive and practical so I got to putting into action all the advice I had been given from those who had already gone through the process. Make sure you request the permission to record the interview. Inform them you’ll be bringing someone with you. Getting my hands on recording equipment (much, much harder than it sounds) and ensuring I am 200% across everything I wrote on the form and ready to produce more evidence and explanation.
Let me just give you an insight into the shifty business of these face to face assessments. You may have seen the undercover footage on television from face to face assessments where the assessor is clearly lying, making things up or generally making a mockery of the system being fair. I was advised to record the interview myself so that I had evidence should I need to appeal the decision as many many people have had to do so over the last few years. I was informed that this would be possible but I would need to record using apparatus that create two identical copies and these copies would need to be hard copies rather than digital copies. I was not allowed to email a copy of the audio and was not allowed to use two separate recording devices. Think about this, then tell me where I would find such a thing! It doesn’t exist in your local Argos or supermarket. You might be able to buy something as niche as this but it would cost upwards of £400 and definitely wouldn’t arrive within the week in order for me to use at my assessment.
I won’t go into the who, how or where I managed to get my hands on the right equipment as it took a friend of a friend of a friend doing me one hell of a massive favour, but safe to say I was able to record it. This was only possible because I have access to the right people. Is that fair? Is that right? No. Absolutely not. The rules about recording your own assessment are so clearly put in place because the assessors are worried about what might be found and possibly what they would rather hide. It makes you wonder how they’re still able to get away with it.
So at the last minute I get my hands on recording equipment, my mum is coming with me and she’s ready to make notes in case they refuse me recording it. I’ve been awake most of the night, my hips are sore because I’m stressed and didn’t sleep and I’m on the brink of breaking. Luckily, my assessor is a nurse so although she isn’t a specialist in my condition, she at least has medical experience. She’s friendly enough and tries to put me at ease even if she does question my request to record the interview and delays whilst she double checks with Head Office.
The assessment takes almost two hours; the letter stated it would be one. She goes through the form I submitted and asks additional questions to clarify or plump out the evidence that I have written. At the end she does a short physical examination asking me to lift my arms, turn my head, raise my knees etc. I hand over one copy of the recording and leave the building. We get about 20 metres away, Mum asks me how I think it went, I burst into tears, she hugs me and we sob into each other’s shoulders standing outside Milton Keynes Train Station. It’s a new low for me but I simply couldn’t hold it together any longer. I felt like I had gone through an extended shouting match with a loved one: emotionally drained, angry, sad, frustrated and spent. Utterly empty with nothing left to give.
The job of building myself back up began again. Food, drinks, friends, cuddles, a well-timed theatre trip and lots of laughs did the trick. Again, the armour was back on but this time with a few more dents and knocks as unforgettable evidence of what had happened.
The 7th July arrives and post comes through the letterbox. Mum calls to say I’ve received a letter which looks like it might be from the DWP and did I want her to open it. The familiar stomach falling out from under me happens whilst I hear her rustling the envelope and silently reading it to herself. Finally, she eventually says I’ve been successful and received an ongoing enhanced award for both daily living and mobility. She keeps reading, and I don’t hear her. I’m crying big fat tears filled with relief. The heavy weight of dread was lifted from my shoulders and the space in my head that was filled with PIP worry suddenly became empty. I’m not losing my car and I’m actually receiving more support than I was before which reflects the change in my condition.
So it’s a happy ending. I’m receiving more support than before and my car is here to stay but does the end justify the means? The whole point of moving DLA over to PIP is to make savings, help cut the deficit and to stop all those benefit scrounging fake disabled people getting money for something they don’t deserve. I dread to think the amount of money the Government has spent on assessing whether I am disabled, from all the letters they’ve had to pay someone to write, to print and post, the people that have had to read my evidence, conduct my face to face assessment and assess the report from this, even the rent and electricity for the building that the assessment was held in.
Add it all up and it must equate to a small fortune just so they can conclude without doubt that yes, I am in fact, disabled.
But can I put this to you? In that moment, when I received the decision from the DWP, I realised for the last few months I’ve not been disabled by my medical condition I was born with, or by the inaccessible buildings or the attitudes of ignorant people around me. I was disabled by the Government, the process they had constructed and their attitude towards me.
They should be ashamed of themselves.
I have also just been through the process and my experience entirely accords with yours. I have had rheumatoid arthritis since 1981 and it is no going to go away. I am a positive person who, like you, gets on with life and doesn’t dwell on what I can’t do. But this process forced me to explain what I can’t do and why I can’t do it and I found this depressing. I used to receive lower rate care and high rate mobility from DLA and was awarded enhanced daily living and standard mobility on the basis I can walk between 20 and 50 metres which is the case. Luckily I won’t lose a mobility car as I have never opted for that and have purchased my own vehicle. But I know others who are really worried about losing their car. This whole process has definitely cost a lot of money and for what end?
Thanks Carole. It doesn’t quite make sense does it, and definitely doesn’t seem to worth the money they are spending on it or the paper they are wasting! Glad to hear your application was successful x
What a great read. I assume I will be going through the same thing in January or February as mine is up for renewal. I know nothing of the 1st pip application as I was so ill. However, I am beginning to worry now. Yes I agree that there are far too many horror stories around the assessment. Fingers crossed, onwards and upwards.
Thanks David. If I’ve learnt anything from the process, the more evidence and preparation you are able to do the better. Don’t assume anything and give them three pieces of evidence for every point you want to make to ensure they can’t argue against it. There are a lot of horror stories out there but that isn’t everyone. All you can do it be yourself and explain in all the detail you can how you are affected by your impairments. Fingers crossed and lots of luck x
Thank you Sam. This needs to be read. You have been invaded and abused. The disempowerment and degradation endured by those subject to PIP investigations seem to echo to the experience of those applying for visas to allow mixed-race fanilies, like mine, to live in the same home. I am very angry. All love. Cherry