Tick Box Torture #esa

I couldn't put it off any longer, if I'm to get my ESA50 filled in, collate appropriate supporting evidence and manage to post it back to the DWP in time, then the questions had to be answered regardless of my inability to sit up straight and focus.

Whilst I'm not a welfare rights advisor, I have a pretty decent working knowledge of how to fill in benefits forms and have plenty of people I can ask to help me - its much more difficult to fill in your own benefits application than someone else's. So, I recruited a friend who knows me well and could interject everytime I tried to insist I could do an activity by pointing out that actually, reality means I can't.

I'm often mystified by the time and attention paid to how distressing filling out an ESA form is...of course it is, so is filling out a DLA form, so was filling out the old Incapacity Benefit forms. Whilst ESA has the added extra stress of knowing the system is designed to redefine the level of sickness or disability which qualifies for social security support, applying for any health related benefit is a miserable business as its the only time in life claimants are forced to reflect on all the things they can't do and focus just on the negative. Even if the DWP sent out forms with kits containing fluffy blankies, hot chocolate and HCP's with tepid flannels to soothe our fevered brows as they assessed us it would still be a depressing process to go through because at no other time in life do people have to focus on how completely incapable they are.

From that you can safely assume answering the questions was a dismal process. There were tears, sobbing, snivelling and snot, with a side order of occasional screeching "I'm not that crap, I'm not, I'm not" while my friend patiently and consistently pointed out that I could not describe lying on a beanbag as a functional ability to sit up. Ok, so my friend is right, its not a functional ability to sit up and there aren't too many activities in life which don't demand an ability to sit and stand properly, or workplaces providing beanbags, naps and oramorph on tap, but I was in full blown ESA hysteria and didn't care. Fortunately my friend won and sensible answers were written which didn't include any "fuck you DWP, I'm awesome and can do everything, oh but please give me enough points for support group because actually I'm not too sure I can follow through on my can do everything committment"

The biggest source of stress was the tickboxes. OMG the tick boxes. Also, who the hell do the DWP get to write these forms, someone who only speaks English as a 15th language?! The tickboxes requiring a tick took more time to work out than any of the free text answers. The free text answers were depressing, but at least relatively straightforward to write - I have EDS, my muscles are exceptionally weak, this causes dislocations without trauma, pain, fatigue etc, but did I mention the OMG the tick boxes issue? I've got a law degree, I've had the odd article published in the national press, generally I think my language skills are reasonable, but could I work out what the right box to tick for the questions were? Could I heck. It was bad enough trying to work out whether the right answer was 'no' or 'it varies' but on many of the questions it was hideously difficult to comprehend whether a no answer meant I couldn't complete that activity or whether the question was so (deliberately) badly worded that actually answering no meant yes.

Most of the sobbing, shrieking incidents were prompted by tick boxes. Bloody, bloody boxes. I miss the longer forms, the longer forms with less bloody tick boxes and enough space to come close to explaining the issues meaning you're not fit enough for work.

But at least I now have an answer to go in each box. Ok, I might not like the answers and prefer to live in the cosy world of denial where I can tell myself I could totes be a Paralympian if I start training now, but that's not the point, there are answers. Now all I have to do is make sure those answers get taped into the right boxes and get to my GP so he can do a letter confirming that its all true.

That bit requires getting out of the house to work to other people's timing and not remaining horizontal on a beanbag convincing myself that makes me fully functional...

Brown Envelope Roulette

 Its all a bit strange not being able to talk openly or on social media about going through my WCA, but I decided that if I did mention it in public while its going on that it might be someone ensures I have a 'text book' perfect assessment process. I feel I owe it to people like Karen Sherlock to go through this in the same way everyone does - like being launched into a game of roulette where claimants are the ball and its sheer chance as to whether things will work out the way they should. Not being able to use social media means not being able to get emotional support and advice as readily, but it feels like the right thing to do.

The dreaded brown envelope arrived, or more accurately I arrived to the brown envelope - having gone to friends for the weekend to escape the stress of social services refusing my entire support package, I got home to find the friendly DWP 'its time for your WCA' missive sitting there staring at me accusingly. Its safe to say the anxiety instantly returned and started to reproduce at a speed bacteria would be proud of. So far 2013 has done its damndest to beat me into submission, and the combined stress of a social care appeal at the same time as going through the Work Capability Assessment is not something I'm relishing.

A few days after the letter I had the promised phone call from the DWP to explain what was happening. Ever so nice she was, Gwen from the valleys and I'm sure she enjoyed hearing me yelp in pain down the phone as part of my spine made a bid for freedom. After a short delay due to the failure of DWP's computer system, during which I pondered how that boded really well for the imminent launch of Universal Credit, Gwen phoned back and we got down to business. Well, she did. I kept quiet and pretended I knew nothing about welfare to see what was I told. I was told that Gwen needed to explain the changes to my benefits, that Employment Support Allowance was to provide support to disabled people to work, which was an interesting scripted spin there from the DWP. Had I not known that ESA was also to provide support to people who are too sick or disabled to work I would have thought I was being told to apply for the wrong benefit. Gwen told me I had to fill in the form, that I was welcome to add as much extra evidence as I liked, but that I must be aware my benefits would be stopped if I didn't complete it.

Gwen went on to explain that I might have to attend a face to face work capability assessment, and that I should assume I'd have to go to an assessment because that was part of the process. She said that if I did have to attend someone would phone to arrange a time and day, that I could take someone with me to help but that if I didn't attend my benefits would be affected. Afterwards someone from the DWP would phone and give me their decision. She wanted to know if I had any extra access needs, so we had a slightly confused conversation (on her part) about ramp access and made sure she wrote down I was a wheelchair user. The final point was to ensure that if I don't receive the forms by March 15th that I phone to chase them up.

All relatively comprehensive, if through a DWP prism of 'you will attend, you will get into work'. So being a well trained disabled I made some phone calls, to my GP to arrange a phone appointment to discuss the form and to my physio to ask her to write a letter I can send in with the form. I've been collecting medical evidence for the last year or so from consultants who've seen me and stated they can't treat the problem because there isn't a treatment, but all those documents are more than six months old so can't officially be considered by the assessor.

I spoke to my GP this morning and asked if he would write a letter to support my application. He said I am to wait til the forms themselves arrive then pop in to the surgery and he'll dictate it there and then. I'm hoping this means dictate a letter not he'll fill the actual form in itself, but I'm very reassured by his attitude to the assessment so far. Although, I can't help but wonder what the point of an assessment process is for those claimants who are called in so their own doctor can go through the questions and provide evidence with them...that seems awfully close to an actual assessment to me.

But, what do I know? I'm just disabled and in receipt of welfare, asking someone like me to help improve the system would just be silly.

Introduction of #PIP in the news

Steve Sumpter has done a great collection of media links and clips from today including the Radio 5 live debate I was involved in with Dr Stephen Duckworth from Capita

There is also an interview on BBC Radio Merseyside from earlier this morning which can be heard here (section starts 2hrs 6 mins in)

Deputy Speaker's Internship - Day 2

Day 2 started much as day 1 did - early morning whimpering, a cup of tea with a chaser of oramorph in the hope that it would reduce the pain enough so that my feeble whimperings when I sat down weren't audible to others. It may or may not have done the pain trick, but it did at least make the scoot across the bridge to the House of Commons much more 'ooh pretty' and the battle with the supposedly automatic wheelchair doors another nice man had to wrench open much funnier. I'm not sure what poor Alex made of my mumbling about morphine as I arrrived, as at this point in the experience I hadn't yet realised he knew absolutely nothing about my condition and had been told not to ask.

We started the day more formally with a cup of tea and discussion in the office, then we went off to observe a Work and Pensions Select Committee evidence hearing of user experiences of the work programme. That was a somewhat misleading title, as although there was lots of talking about experiences, there weren't any actual people who might have used the work programme present...just people who's job it is to somehow comment as though they are users of the work programme. It was very exciting to be in the actual room having watched so many of these hearings online, and hilariously weird to be tweeted by my friends suggesting if I just moved one seat along they would be able to see me on the live feed.

I would have liked to stay and see the whole evidence session - there were some very interesting points being made about the complete lack of information for employers or work programme providers in relation to disability - ironically some of the same issues Alex had experienced when he was working to put the intern programme together for the week. The particular scandal was that there was no point of contact for providers or potential employers to be given information about reasonable adjustments, how to help support people or even to speak to Access to Work. It's no wonder the work programme is less effective than not making any interventions, what on earth is the point of throwing endless money at something when its actual design prevents it from working?

However, all too soon we had to leave and to something even more exciting than a work and pensions select committee (yes, I really must work on the getting a life thing!) This was a wednesday, and so a PMQS day - the big draw of the week. Alex and all of Nigel Evan's team made huge efforts to get us tickets as they knew how excited we were about being able to watch that. To make it even more special we were able to go into the central lobby to watch the Speaker's Procession just prior to PMQ's and then were in the house for the feistiest, funniest PMQ's I've seen in a while. It is overwhelmingly loud in there and MP's of all parties are astonishingly badly behaved.

Then it was straight off to a grassroots football event sponsored by McDonalds. I was deeply disappointed that Big Mac's were not on the menu! Fortunately I'd mentioned my utter ignorance of all things football prior to going into the event, so when the nice, smiley man came up to us to say hello, Alex introduced him by name and explanation - it was Sir Geoff Hurst (who, for those as ignorant of football as me, apparently scored goals in the 66 World Cup) We had a chat about my 'swizzy pushchair' which he immediately apologised for calling a pushchair and explained he gets muddled up, partly because he's got young grandchildren, and partly because he spent alot of time pushing his daughter in her wheelchair when she was poorly. I explained that my Dad sometimes calls it a pushchair too, and that as he actually did push me in a pushchair that its an understandable dad mistake to make! I was sorry to hear that Sir Geoff's daughter had died, and we had a little hand hold empathy moment in the middle of the football reception.

If you're looking for football details from the reception...I don't have any sorry! But we did also meet some man called Pat who was quite handsome and apparently used to be good at football too, and there was a fascinating, inspiring woman speaking who was a volunteer football coach in addition to being a policewoman.

We finally managed to get some lunch at about 2.30pm in another of the subsidised restaurants, but for me the day was a real struggle and I'd had to duck out of the football reception briefly to take more oramorph.

The last event of the day was observing a debate on the privatisation of the probation service - it didn't last long as the division bell rang and all the MP's went off to vote, but the most interesting bit was how many of the issues relating to the failure of the work programme came up in relation to probation services, especially as the criminal justice and probation services spend so much time with people with mental health problems or learning disabilities. It showed very clearly that whatever the rights or wrongs of privatising probation, there isn't any point doing anything to it unless we have effective back to work support which can cater for a huge range of barriers.

I was really struggling with pain and fatigue so after we'd finished and I got to go and meet fellow campaigner Jane Young for the first time, its no wonder she was horrified by how pale I was! But, it was still a fantastic day and great to be able to talk it through with friends for a few hours afterwards.

Photo shows Sir Geoff Hurst, a white man in a dark suit with a red tie leaning on a lectern as he gives his speech on grassroots football

Deputy Speaker's Internship - Day 1

Having been sent a detailed timetable in advance I had an idea of what to expect we'd be doing when - and it was quite the packed schedule. I arrived in good time to get through security for 10am to find the wheelchair entrance full of buckets and the doors not working. The lovely security man quickly cleared out all the stuff that seemed to be related to trying to fix the entrance and got me in through the first door...which was when we realised that the other door opened in the wrong direction and the only way for the security man to force it open was to lean over me on the scooter. Fortunately he was awfully nice when I ran over his feet while scooting under his arm! I like to make an impression when I arrive in places, but marking someone's feet really won't make it onto any 'good impression' list.

Putting aside the trauma of inflicting actual bodily harm on a House of Commons security staff member in front of a load of armed policemen  before 10am, things went better after that. We all met up with Alex who was in charge of our group for the time we were there, then went up to the Deputy Speaker's office where we met other staff members, and Nigel Evans himself to chat about the programme ahead over coffee. Then we were privileged to sit in on an interview with Nigel about the relationship between openly LGBT politicians and the wider rights legislation in those countries. It was fascinating to hear the candour Nigel displayed in answering the questions and I felt very strongly that many of the issues he was talking about in terms of acceptance were the same as those faced by disabled people. As he described his experiences I felt a mix of respect for him for speaking out so openly, empathy and hope that it can be, will be different in generations to come.

We were scheduled to go on to an Education select committee evidence session after that, but it had already finished so we went to observe the Culture and Sport committee for half an hour, then on to have some lunch in Portcullis House. I didn't have a PA with me, but the BSL interpreters were really good about checking if I needed any help and Caitlin who was also interning in Nigel's office was a huge help with all sorts of little things I couldn't manage.

In the afternoon we went up into the Stranger's Gallery so we could observe Nigel in the Speaker's role during the Opposition Day Debate. The seats to observe are mostly in really steep tiers, but the upper part of the gallery is wheelchair accessible. However, when sat either in a wheelchair or one of the more comfortable seats that fold away neatly into the floor eyelevel is below the window so its really quite tricky to see, when we discussed our afternoon with Nigel and his team later on he said that explained why I kept disappearing out of his eyeline during the debate! I could only hold myself up properly to sit up and see for very short periods of time before needing a rest. The debate was really quite challenging to follow, both in terms of our ability to observe and being able to understand it. Paul and the BSL interpreters found it especially difficult as the subtitle service wasn't working on the screen on their side of the gallery, and of course when it does work it is so far behind what's actually being said that its impossible to follow the order of business that way. I was trying to explain all the different taxes that were being discussed to Caitlin, who was from Tennessee- bedroom tax, mansion tax, 10p tax rate, spare room subsidy - it was all so complicated I can't remember what the debate was meant to be about!

It was an exhausting day for me as sitting is one of the activities I find most painful and tiring - watching a long, complex tax debate through the time I'd usually be napping was very challenging and we got to know one of the Stranger's Gallery staff especially well as he kept joking that he was going to go and get me a blankie so I could lie down! The fun fact about the Commons that I learnt that afternoon also came from Matt who explained to us the bench he was stopping anyone from sitting on was reserved only for police officers, but that police officers must not be wearing their uniform when they sit there. Westminster is a very odd place, full of all sorts of arcane but fascinatingly weird little rituals. 

We finished the day with another chat over coffee about what we'd observed and then, exhausted though I was, it was time to go back to the hotel all too soon. I decided as I was in London I had to find my big girl pants and get brave enough to go places on my own...so instead of a cab I scooted back to the hotel on my own - it was so cold on the bridge I was still shaking back in my room under two duvets!






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