After a long wait, battling the nerves of waiting for such an important decision, I thought my time wandering the PIP wilderness had come to an end as a brown envelope dropped through my letter box in mid May. At the start of April I had posted off my completed application form hoping the my transition from Disability Living Allowance to Personal Independence Payments would be a smooth one. I had filled in every one of the countless pages, which in itself was a trial fit for Hercules. I had stuffed the envelope with copies of many pages of medical evidence to support the sworn explanation of my impairments and how they impact on my day to day life. I was sure I had done everything I could to see myself through the dark days ahead, and that I would soon be back into the light of knowing my fate.
After a few weeks I received a phone call from someone that described themselves as an assessor nurse, who wanted to ask me for some clarification on my case. We chatted for around 20 minutes, and I used all the medical terminology I have learned over my 51 years in the clutches of the medical profession to answer her questions. I gave her detailed descriptions of my impairment, my care requirements and the medication I take on a daily basis, and we parted on friendly terms. I was assured I would not need a face to face assessment as my case was fairly straight forward. With that I felt a weight lift off my shoulders. I almost forgot that I was waiting to find out if I would still continue to receive financial support essential to me living an independent life.
The day came when the aforementioned brown envelope came and to my pleasure I saw it said I had been approved for PIP. As I read further I saw, with horror, that my award was £30 per week less than I had been given under DLA. The reasoning was that I needed no help with many day to day tasks as my arms worked well for most days, despite having painful arthritis in both shoulders. It stated I always exercised unaided. I read this a little stunned. While we had discussed the exercises I do to maintain my arthritic shoulders do not seize up and to ensure I keep fit, I had also explained I have 30 minutes of passive exercise per day. I foolishly had expected the "nurse" to understand that the passive in passive exercise means they were done for me and not unaided at all. I had put this in my application form though. As I read I noted other mistakes too. What to do?
I plucked up the courage and nerve and rang the number on the decision letter, and was put through to someone who deals with queries about PIP findings. I went through my list of issues with the decision, but was told one by one that the judgment was made on how I was for most of the time, not when I was ill or unable to do as much as I can usually. Aghast, I held back my tears, as I realized that it no longer mattered that while on bed rest I needed everything doing for me, say having a bottle or bedpan brought to me, emptied once I had used them and cleaned ready for the next use by my wife, for example, if I could mostly go to the loo OK then I was stuffed. Then I explained that I my 30 minutes of exercise was passive, i.e. done (again) by my wife and this was everyday. This seemed to perk the person on the other end of the phone up. Apparently this had not been noted on my claim. She would now put in a application for new decision. Just as I began to relax she read out a disclaimer, stating that while I could find my PIP goes up, it could also go down and maybe even stop all together. My blood ran cold. I put the phone down, to discover I was soaked with sweat at the stress of it all.
What's terrifying to me, is that as I write this I can see that highly personal things that I would usually keep private I now share with everyone. This is what happens when what was once something decided by medical experts who knew your medical history is opened up to so called expert assessors. Disabled people are now having to beg for small payments that once were held up as entitlements, and a way of making society fairer. I'm a confident, happy, successful and intelligent disabled person who, while I find dealing with authority difficult, am not thrown into a mental collapse or illness by the stress. How many people would just accept a lower award terrified at the chance losing the payments all together or requiring an infamous face to face assessment? The government claims PIP was introduced to make the process "fairer and more affordable". I think it's clear the emphasis is on affordable.
So now I wait for another letter, to see what the outcome is of my challenge to the PIP decision.