Sunday, 22 July 2012
I applied for DLA in December 2010. I've been ill and off work since 2003, but some bad benefits advice in around 2005 meant I thought I wasn't eligible to claim DLA that whole time. While that led to me losing out a lot of financial support, it was probably also the catalyst for wanting to become a benefits advisor and make sure other people don't get caught by poor advice. I'd made the classic mistake of thinking I had to have carers to get DLA rather than being made aware that it's about your need for care, rather than the actual provision of it that qualifies you for the benefit.
After some job training about other benefits, I realised I fitted the criteria and got a form. Slightly daunted by the size of it, I got out my favourite pen and started filling it out in my best handwriting, thinking how hard could it be? Turns out, if you aren't blessed with government department bureaucracy style thinking superpowers, attempt to be positive about your conditions and your life and don't usually have someone to help and thus can't picture how that would work, it's akin to trying to make the Enigma machine singlehandedly using two bog roll middles and a cornflake box. The form is a masterpiece in asking a question one way and expecting the answer another. I ploughed through it, making all the classic errors everyone else does when they see one for the first time, especially if they have mental health needs as the prompts are all physical related.
I said I didn't need help with my medication because I didn't take psychiatric medication, but didn't know to say that I didn't take them because I couldn't cope with them, couldn't get them easily due to my agoraphobia and because of the horrible side effects. I said I had no night needs because I didn't need anyone to physically help me into bed, not realising that i should have mentioned not being able to sleep without the TV on or the nightmares and reliving of PTSD. I didn't explain how someone could help me day to day because I don't have anyone to do it. I just wrote down what I thought I needed and felt like I'd been hit by a truck doing it. Seeing my life in black and white almost reduced me to tears at a time when I was being taught to be positive about it. I did the form wrong and it was still one of the hardest things I've done.
Surprisingly enough they awarded low rate mobility as I need someone to guide me when outdoors due to agoraphobia, but said I had no care needs. Thrilled to be around £20 a week better off and passported to other things like a Freeview upgrade and some help with energy bills (this depends on your supplier), I didn't query it. I started my volunteer role and began learning how to fill out DLA forms like a demon. 8 or 9 months later, able to fill out a full form in under an hour and half and not having had a single case turned down or need to go to appeal, I realised I was missing out because I definitely fit the care criteria myself. I asked for a review form to do a supercession and see if I could get my award altered.
Taking more than 4 hours to do it, I girded my loins and waded into the world of being honest about how crap life is most of the time. I backed it up with prescriptions, social worker reports, Community Mental Health Team reports, a full psychiatric report from from a psychiatric hospital, two letters from therapists and medical notes in some cases going back 15 years. They turned me down. I appealed. They still turned me down. A tribunal was the only way forward.
The waiting list for tribunals is evergrowing as both Employment Support Allowance and DLA awards seem to be modelled on finding the Higgs Particle. I asked for mine in October 2011 and it was set for 12th July 2012. Technically this gave me ages to collect further evidence for my case, but in reality meant I just sort of forgot it was happening because it was so far in the future. The one thing I did in that time was after discovering the inaccurate, incomplete and biased report my GP submitted to DLA was move GP to one who doesn't think I'm a big malingerer. Unfortunately I dithered about if for so long I ended up doing it too close to the tribunal and put myself in a situation where my new GP doesn't have my notes and couldn't write me a supporting letter.
Trying to comfort myself I'd saved up £45 on that at least, I gathered up the evidence to show my condition had worsened and that I had had to be referred to specialist services and found someone to come with me. I needed someone reliable and able to balance practicality with being comforting and who wouldn't look horrified by the details of my life I usually prefer to keep hidden. Turns out I am lucky enough to have a choice of people to ask, but it had to be my friend A who asked where was good for lunch nearby and gave me something else to focus on!
I sat down and went through my appeal bundle, sending my supporting evidence back to them by recorded delivery and picking out where the DWP were wrong or had ignored evidence or points of eligibility. Three A4 pages of detailed notes later I felt ready to take on the world. I spent more time choosing what to wear, eventually going for the obvious choice of what I would normally wear when I left the house. For me that included my mask of make up and I made a mental note to explain the healing power of eyeliner to them. We made our way to Holborn in good time and I realised I was actually incredibly unpleasantly overwhelmingly anxious (seriously, after 8 years this still surprises me...)
Greeted by a receptionist who resembled Dolly Parton crossed with the duffled coat dwarf in Don't Look Now who was annoyed I'd forgotten my letter, my first reaction to the tribunal was to run far far away. A quick trip to the toilet reminded me it would be awkward to explain to A why I'd pissed off and left her in a waiting room, I went back. The clerk of the session came out and introduced himself and the panel. I'd been expecting 2 on the panel, so was thrown by the fact there are 3. You get a doctor, a tribunal judge and a disability expert in a DLA tribunal, but only the doctor and judge in ESA tribunals. I barely had to wait before we were off down the glass corridored rabbit warren and delivered to a large bright room with 3 people waiting.
Pleased to see one was a woman, they explained that they are independent of the Department of Work and Pensions and are from the Ministry of Justice. They outlined the judge was there for fairness while the doctor would ask about my health and the disability expert would assess how the law of the benefit fitted in with those answers. And we were off. The female doctor started and I found her pleasant with an air of neutrality but just enough interaction to be aware she was human. I did find it odd that she asked me about all my illnesses and conditions, except the PTSD and everything seemed swerved away from that elephant in the room for some reason I couldn't quite fathom.
I found the questions from the disability advisor harder to deal with, party because he looked just like the coelacanth at the Ulster Museum, but also because it was hard to answer these with my 'sick person' head on than my 'advisor' head. Part of me knew the point of eligibility he was raising and wanted to highlight it, but the rest of me just wanted to kick my heels and complain like a toddler til someone gave in. I was also massively taken aback to start crying when he asked me about my night needs. I've sat and discussed the nightmares and reliving of my rape with plenty of experts over the years, but I've never shed a tear before. It was like being stripped bare and asked to beg. I can't remember the last time I felt so exposed and I really thought at one moment I wasn't going to be able to pull myself back without collapsing.
But throughout that moment and the rest of the hour long tribunal, the people involved were polite, listened to me without patronising or interrupting and treated me like a person not an inconvenience who fucks up their nice statistics by being alive. They offered me professionalism and allowed me a chance to speak like an adult with a brain in my head. After years of contact with the DWP and Atos, this shocked me and disarmed me. I couldn't read their responses. Where they luring me in? Where they really being nice? I couldn't be sure to trust them and I left feeling unsettled and unable to assess how the tribunal had gone.
DLA tribunals don't usually give decisions there and then, unlike ESA ones and I had to wait until Saturday morning's post to get my result. They awarded me low rate care for two years, backdated to last September and extended my low rate mobility for a further year, meaning the two award lengths match for renewal. It also means I don't have to do my DLA in the same month as my first ESA50 which is a nice bonus. I was originally pleased to see the award, although pissed off that they'd discounted my night needs, thinking I cried for you and you ignored it. But then a sense of profound upset came over me.
I've been sick pretty much constantly for 20 years and still it suckerpunches me when experts agree that I'm ill. I find it easier to say to myself that I'm just not well today than accept I'm probably never going to get completely well again or have back all the things being ill has cost. To see an agreement that I am very unwell in black and white knocked me and made me feel that for every progress I do make, it's really just me kidding myself. I'm no closer to holding down a full time job than I was two years ago. I'm still sick and struggling despite all the therapy I've done and I can just picture myself doing the tribunal roundabout for years to come. It felt heartwrenching and I wobbled all week, only perking up slightly when the DWP paid the backdated amount in my account this week.
Money doesn't buy you happiness. It doesn't buy you health, but it does make it easier to pretend life is normal and for that extra support I thank the tribunal for seeing sense and standing up for us when the DWP refuses to. It's been a long 10 months, but I think I'm glad I did it if only to remind myself what wonderful friends I have and to treat myself to the proper Miss Marple box set I've been eyeing up for years...
(I also like to take this moment to tell the Daily Mail to ram their filthy rag somewhere that means they have to start explaining their toilet needs to someone on minimum wage who hates sick people and see how easy 'just' filling a form in is...)