My PIP Diary Part Two – The Battle Through Paperwork Mountain

First published Huffington Post 06.04.2017

A black and white negative photo of a DWP PIP form with a pen laid over it, as if it was being filled in.

In the first of my PIP Diaries I explored how finding myself thrown into the process of being reassessed for the new Personal Independence Payment made me feel. After being placed on an indefinite award for the so called “disability benefit” Disability Living Allowance that PIP replaced way back in the 1980’s, it was a shock to have to re-examine my life and abilities. I was stunned at the number of comments on the piece, and how it touched a nerve with so many other people who were either going through the process or had gone through it. The comments from that group were rather doomed ladened, and so as a large brown envelope fell through my front door I found myself filled with dread.

Before I regale you with stories of forms and piles of evidence to be scanned, I must point out that both DLA, and PIP are not out of work benefits. You can work and be in receipt of PIP. In fact they were created to help people cover the extra costs of being disabled which can mean many disabled people are able to work thanks to getting them. So when I say that I am rather good at filling in forms as it has always been part of my job, I’m not admitting I’ve spent a life on the benefits fiddle. As a youngster I worked in the benefits system, helping people make their first claims for dole and supplementary benefit, and learned how to fill in forms in a manner that ensures you give the right information. After that I worked in the media, helping create schedules for filming days and I now create audits and training guides around inclusion and accessibility. Thus forms are one of my key skills. Yet even I found my pen hovering over each page, unsure what to put.

Each double page covers an area of your life, things like getting washed and dressed to managing money, yet it isn’t exactly helpful in what you should put. You are asked do you need help? Yes? No? Sometimes? What on earth does sometimes mean? Once a day, once a week, once a month, or maybe once a year? Or is once a day a yes answer? Would once a year mean a no? There are pages of this. Next to the “simple” yes, no, sometimes questions, there is a page for more detail if required. I’d guess that if you didn’t fill this section in you would get very far. Yet how do you complete this to explain complex medical issues and detail the ways you are helped to live? As I said I’m really good with forms, yet with each page I got more and more nervous. Was I doing this right? Finally I finished, and had to just hope so.

A black and white photo of Mik Scarlet's face peaking over a pile of letters from his doctors and surgeons.

Next I collated medical letters from the various specialists involved in my medical treatment. Some are years old as why keep seeing experts, costing the NHS money, when I cannot be cured and my situation is static? Will the assessors understand that not seeing a specialist is not a sign of being cured or healed, but that a condition cannot be treated any further? More worrying is as I read through each letter I noticed that my diagnosis and prognosis varied wildly. I sat, shocked as I realised that there was no clarity around my medical condition. In fact some were so dangerously wrong I’ve had to get in touch to arrange an appointment to correct the errors urgently. As I scanned each page I felt a growing wave of fear, as while I understand where the errors lie, how could the assessors? With some actually contradicting each other, another fear gripped me. While I placed my forms and supporting docs in the envelope ready to send to the DWP I felt sure I would end up requiring a face-to-face meeting with one of the dreaded assessors. Thinking positively, this might hopefully allow me to clear up exactly what my medical issues are and what I can and cannot do, with or without help. Or not! As I slipped the stuffed envelope in to the post box I felt numb, with no idea what would come next.

Thus ends the second of my PIP diaries. I’m still shocked at how exploring my life in the mirror of what I cannot do has hit my confidence. I also now am gripped by a fear that a benefit that ensures I can work, as it funds my car through the Motability scheme, may be taken away from me. With the horror stories of people with obvious impairments that equally make walking impossible losing their PIP funding it is a real possibility. Of course looking on the bright side, with my medical records having so many mistakes in them, I’m damn lucky I’m here at all!

With that cheerful thought I shall leave you, ready for the next installment in my PIP dairies. Will I have to face the dreaded assessors? Will they visit me at home or will I need to battle my way to their lair? All this and more next time.

Photos Mik Scarlet 2017

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My P.I.P. Diary – The Saga Begins

This the first in a series of diaries charting my journey as I am assessed for the new Personal Independence Payment.

A negative image of a letter from the DWP, informing of a PIP reassessmentIn 1981 my spine collapsed, leaving me paralysed. After I came out of hospital I applied for two benefits called Attendance Allowance and Mobility Allowance. I was assessed by a medical expert, who interviewed me and liaised with the medical professionals helping with my treatment to ensure they understood my case. I was awarded an indefinite award of both allowances as it was clear my disability was one that would never improve. Years later these benefits were combined into Disability Living Allowance and my award was ported across as my impairment was still would never get better, and in truth it would only get worse over time.

This Monday I received a letter from the DWP which I had been dreading. I am to be reassessed for eligibility for the replacement to DLA, Personal Independence Payments or PIP. I immediately rang the number on the letter and was helped through the first part of my claim in a very helpful and friendly manner. I am now waiting for the forms to be posted to me, which I will then need to fill in detailing every detail about my current abilities and medical conditions. I will also need to collect a large amount of evidence to support my claim. I plan to write about this process in future columns here on the Huff. In this article I wanted to explore how having to examine my physical abilities and list how they impact on my life is making me feel, something that is left out of the current debate around the roll out of PIP.

After so long as a disabled person I have got totally used to my life. I have a wonderful wife, who has been with me for 21 years, who helps me with day-to-day stuff. Our relationship works amazingly well, despite the fact that she does things for me that she would not do if I was not disabled. We work so well together that neither of us think about this kind of thing at all. Well we didn’t think about who does what for whom until now. Now I have to prepare to list everything that I cannot do, or need help doing and then list how my wife Diane helps me. I will need to get every doctor and medical professional to write letters outlining my medical issues, what treatments I have had and am still having and how these impact on my life and abilities. I am stunned at how I feel about this examination of my personal life.

I found myself filled with waves of sadness and self doubt while I was in the bath. I need help getting in and out of the bath as my shoulders have arthritis, meaning I find it hard to weight bare unaided. I could have a shower put in, but baths stop the spasms in my legs which cause me a great deal of pain. I also need help washing my back as my shoulders lock and once I’m out of the bath I require help with drying and Diane holds me up as I dry myself, in case I slip during the drying process. I have never told anyone this. Not even the medical professionals in my life, as I feel this is personal. Yet this is just one element of what my wife does for me every day. I was shocked at how long the list of things I need help with actually is. So there I was, sat in the bath feeling awful as I mentally listed everything Diane does for me, and the guilt was palpable. The feeling that my wonderful wife was burdened with me washed over me like soap. I have never felt like that before.

What is most tragic is that the money I get in DLA does not even go to Diane. She does all these things for free, out of love for me. Instead the mobility element goes towards paying for my car, which I lease from Motability. The care element I use to pay for things like wheelchairs. Just one of my current wheelchairs cost me over £5000. I buy new tyres on a yearly basis, which comes to around £60. A new cushion is over £250. Wheels are over £1500 per pair. The list goes on. And that’s just my wheelchair. The disability charity Scope calculate that disabled people have on average extra costs of £550 per month, and that is what DLA and PIP are meant to help with. Not totally cover, but help towards.

As I was helped out of the bath, I admitted to my wife how I was feeling and she hugged me. She told me I was not a burden, yet I can’t under estimate how much beginning the PIP application process has impacted on my confidence and mental health. And the saga has only just begun…

First published on the Huffington Post 22.03.2017

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Has the everyone just started taking crazy pills?

Just when I thought the topic of disability and sex couldn’t get more media focus, something else catches their attention. Alongside the proposal from Becky Adams to open a special “Disabled Only” brothel that I explored in my last blog there is now the story of Chris Fulton who is looking for a solicitor who will help him fight for vouchers from the NHS to pay for disabled people to visit sex workers on the state. I can’t even begin to explain why this is a non-started of an idea. But I will try…

Disabled people who have impairments that effect their mobility or their ability to carry out daily activities easily already get payments through the DLA, which is soon to change too the PIP payments. It’s our choice how we use those payments, so if a disabled recipient feels that they need to visit a sex worker they can use some of that money for that purpose. To claim that sex is a human right opens up a can of worms that might lead to many other members of our society demanding that they also have the right to visit sex workers of the NHS. I’m sure this idea will drive those people who believe the propaganda that disabled people are already getting loads of free stuff from the state into a rage. A visit to the Daily Mail online will prove me right I feel.

Of course at the minute disabled people are facing a mirriad of cuts and changes in how their lives are run. One of the biggest is the closure of the Independent Living Fund. The fund used to provide funding to cover the costs of paying for Personal Assistants, who allowed people who need help with dressing, washing and eating to living independently. These costs are now going to expected to be covered by local authorities, but there is no legal expectation for them to do so. This means that many disabled people are facing the prospect of a future in residential homes, after living their lives in their own homes totally independent. Surely this is the kind of thing that people like Chris should be campaigning for? How can you use your hooker vouchers if you can’t get dressed, washed or fed?

But even if you ignore that bigger issues, how would this work? Who says who is so disabled that they are entitled to use the voucher scheme? Would the government get in Gok Wan to cast his eye over the claimants to decide who isn’t sexy enough to get laid? Or even worse, would Atos being hired to run Sex Capability Assessments? Would you need to be assessed by a panel of Atos experts before you could claim for a freebie sex sessions?

Then would those pesky fraudsters start trying to get the vouchers even though they weren’t entitled to them? Would non-disabled people be greasing down their hair and acting all disabled in the attempt to get some free sex? Or would sexy cripples try to down play the gorgeousness as they feel they should also be entitled to some extra sex? Maybe the BBC’s Saints and Scroungers could run a sex special exposing those terrible people who are really able to get themselves sex but who have pretended to be unshagable to defraud the state.

In all seriousness, is state funded sex the real answer to the way disabled people are considered by society? I would hope that we would campaign to change the way we were thought of by the wider world. More disabled people in the media, more opportunities to find work and accessible housing and an end to the targeting of the benefits that allow disabled people to live an independent life would all be campaigns that might help a little. Now it might seem a bit like a “Giz a job” idea, but I really feel that more strong, confident and attractive disabled people in the media would help loads. It would show the non-disabled world that their stereotype of disability is wrong and create role models for disabled people. I know that I have met loads of disabled people who have told me that seeing me on the TV back in the 90’s gave them the confidence to dress up, go out and have fun. Whether we like it or not, that is how most people meet a partner. I must also admit that I used to get a lot of steamy fan mail when I was a kids TV presenter. All those mums watching TV with their kids had no problems with the idea of sex with a wheelchair user that’s for sure.

Disabled people want equality in choice and experience. Expecting the state to pay for us to have sex is so far away from this dream it hurts. On top of that it damages the way society sees us further. I want the wider society to start seeing disabled people are great protective partners and not tragic charity cases that all have to pay to get their bits felt.  So come on folks, let’s stop shouting about such silly ideas.

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