An Observation on Claiming PIP and the Benefits System

Following my accident in 1983, I had some difficulty coming to terms with being ‘disabled’.  I really did not want the label, not that I had any prejudice towards disabled people, quite the contrary.  My prejudice was just towards the attitude of many able-bodied people towards disability. 

I had seen it with my mother, the embarrassment of others as they took in the de-humidifier and the hole in her throat from the tracheotomy, the wheelchair with the big incontinence pad……….  Not a road I relished walking!  I remembered that as I pushed her wheelchair, people would talk to me about her as if she wasn’t there, or as if she couldn’t understand.  Being very sharp of mind and equally sharp of tongue, she was quite prepared to tell them she was quite capable of answering for herself and that losing the use of her legs did not mean she had also lost her faculties! 

During the early years after the accident, I too had the same experience – ‘How is she today’ the well-meaning lady would ask my husband, those in the same boat as me will understand just how offensive that is!

 At the time, although my marriage was lacking in many respects, financially, my husband could afford to provide me with a vehicle, so I resisted claiming DLA, feeling that we didn’t need it, we could manage without it and shouldn’t take from the system just for the sake of it.  Ironic really, having a social conscience can come back to bite you firmly on the behind!  In later years the fact that I had not claimed the benefit was used against me as proof that I ‘could not really be that incapacitated, as I had never claimed benefit for it’ (sigh………)

In 1995 my first marriage and financial security ended and when my transportation finally gave up the ghost in 2006, I was not in a position to fund any sort of replacement.  I had no other option, I cannot function with public transport due to mobility issues and pain levels, I had to claim the DLA Mobility Component.   After the usual heart jerking, sleep depriving weeks while the claim was looked at, thrown out, appealed and finally granted, I was awarded DLA Mobility component as a lifetime award!  It has provided me with a car since.

Up until 1995, I didn’t officially work, but helped out when I was fit enough, with my husband’s (now ex-husband’s) business.  I could do accounts and a few other bits on a computer in my lounge on days when I could manage it, but on days when the brain was too befuddled with Morphine, or the pain simply too bad to allow any type of concentration, I didn’t have an employer to explain to. 

That all altered in 1995, when I suddenly found myself homeless and penniless.  I got a job in an Estate Agents initially, but after a while had to leave as my disabilities were preventing me from doing some of the tasks and I was having too many days off with the pain.  Later I went to work in an insurance brokers.  That had been my husband’s business and I knew the owners from that previous life.  They agreed to try and work with my disabilities, but in 2000, two DVT’s in the year on top of everything else finally finished that off.

I was back in the benefits system following the DVT’s and a particularly nasty fall, until in 2006 I decided I had reached that point where I wanted to be in control of my life again, not dependant on the good graces of the DLA and other benefits.

I went through the ‘Back to Work Scheme’ operated at that time by the Jobcentre.  In order to get a job however, I actually ended up having to create it!  I started my own business, one which would allow me to work from home, hours to suit, even at the times when I was at my best in the early hours, and rubbish during the day.  E-mails often carried a time of 3 a.m.!  I needed only a computer and a telephone, could sit with my legs up on the sofa, could stop and take my meds, could attend medical appointments and catch up later, yep, this was the way to work around my disabilities. 

I have often spoken to a prospective customer in my dressing gown in too much pain to contemplate dressing, with my hair a mess as I need help to shower, without makeup as the facial pain is too severe to bear putting it on, or even at worst, prone on the bed, thinking thank God this isn’t Skype! 

I never made a lot of money, but could honestly claim to be working for the right number of hours to claim Working Tax Credit to top up my meagre income.  Sorted!

Sorted that is, until this year when I had a heart problem in March, which resulted in a blue light ambulance rush to hospital.  Some days later I had a diagnosis of Angina, more tablets to add to the existing cocktail, and a GNT spray for further attacks.

I had been thinking that the worsening pain from my Osteoarthritis, Psoriatic Arthritis and damaged spine would soon mean I would have to call it a day, but my official retirement is due in February 2016, so I was just hanging on in there till then.  Following this latest addition to the list of ‘conditions’, it took me from March to May to realise retirement might have to come early!  Consequently in June, I hung up my clipboard, and wound down my business. 

Having resisted claiming the care component of DLA for all these years, it was now quite obvious that as the list of things I can’t do is winning by a head over the list of things I can do, my level of mobility is decreasing rapidly and the pain levels are increasing at a rather alarming rate, I was going to have to consider claiming the Daily Living component of DLA too, or so I thought. 

I rang the DLA to ‘report changes’, and was told that I would have to claim PIP, not only that, but once I did, my lifetime award for the Mobility Component was invalidated and that would be transferred to PIP too.  DLA would continue to pay me while the claim was assessed, but once I had a decision, it would all be transferred to PIP.  The lady was at pains to let me know that just because I had a Lifetime Award of DLA Mobility, did not mean I would qualify for PIP automatically.  It almost sounded as if she was trying to put me off doing it.

Hmm, let joy be unconfined!  Like many, I had heard the horror stories about unfair PIP decisions, but the lady at DLA had said assessment had started in my area already, so no doubt I would soon be transferred anyway, and I really did need to claim for the Care Component, so hey-ho, bring it on.

I recently therefore, had the ‘pleasure’ of filling in a PIP form. What a soul destroying task!  It actually took me the best part of a week, researching it, finding out what is was they were actually asking, drafting out answers, correcting them and finally, baring my soul on this form, which with all the additional pages of explanation attached, would have given ‘War and Peace’ a run for its money in length!

I guess there are many of you who like me, try to wear a mask to the world.  When asked how we are, we are ALWAYS, ‘fine thanks’, even though we are anything but fine.  The enquirer really doesn’t want to know in great detail just how ‘not fine’ we are, so we offer a bright smile (unless you suffer from TN and can’t smile), a breezy comment; they have done their duty and enquired, we have not driven them away by information overload! J

I guess there are also many of you who like me, push yourself to do things.  These are things you really can’t do, but sometimes, when there is no one else, when help is not at hand, you summon every bit of resolve, adrenaline and sheer will power and do them.  You may well be observed doing these things by neighbours and others, but what they don’t see are the hours afterwards when the pain is so severe that it reduces you to tears, causes you pop even more pills in the hope of getting some drug induced oblivion, or that you simply can’t function for three days because of what you did on one.

We do these things to retain some semblance of a normal life.  Are we fine?  Can we do these things?  No we are not and no we can’t, but what is the alternative? Become such a ‘Moaning Minni’ that friends start giving us a wide berth?  Let our life deteriorate even more than it has because we can’t do something and there is no help or no one to do it instead?

This is our reality ……………… and then we have to fill out a PIP form!

Every help forum, every advice line, every news article or blog you read about our new benefit system for the disabled, makes it plain that in order to be awarded PIP, you need to admit to everything, not gloss over anything, not let embarrassment prevent you from listing a particularly personal problem or difficulty, not try to put on a brave face, not try to make light of your problems.  You need to paint the bleak, stark picture of the reality you have not ever allowed yourself to face!

As a system I believe was designed to ‘empower the disabled’ if you read the rhetoric, was there ever anything so dis-empowering designed?

No credit is given for struggling on in the face of adversity; no allowance for trying hard to do something, even if you pay for it for days after; no credit for playing down the severity of your problems in the hope of avoiding depression and staying upbeat!

The very form dis-ables you.  It took me the best part of eight days to complete it and gather together the appropriate evidence from my files, then photocopy the whole lot, just in case they lost it, which I understand happens with amazing regularity.  It then took me ten days to get myself back to normal, well, what passes for normal in my life!  I felt old, I felt ill – the pain felt worse because I had admitted just how bad it was; I had listed in painstaking detail the things I could not do – it took me days to re-focus on what I could do; I had embarrassingly listed every aid I use and more embarrassingly, why I have to use them, when I normally try and pretend to myself that they don’t exist!

I didn’t recognise me from this form.  This person was a disabled wreck, where was the bright, intelligent, person with the satirical sense of humour?  Where was the person with stubborn determination to be the best she can be despite the hurdles?  Where was I?

The form duly submitted, I have received the standard acknowledgement and now await the inevitable medical assessment. Every brown envelope that lands on the doormat is viewed a little as one might view a rather large spider, with caution and apprehension in case it bites or carries a sting in the tail!  Typically, because of winding up the business I am getting more than the usual amount of brown envelopes on my doormat!  More opportunities for my heart to jump into my throat and my blood pressure to take a hike in the upward direction.  Avoid stress the hospital said on discharge – fat chance!

Before finishing this observation on claiming PIP, I would just like to commend a website I found.  Being an avid researcher and Googler of all manner of things, I obviously Googled for information on completing a PIP claim.  I found a site called Benefits and Work, www.benefitsandwork.co.uk.  There was a membership fee, I think it was a few pennies under £20 for the year, but you can then use all the resources.  I joined and downloaded their notes on completing a PIP form.  They were brilliant and I don’t think I could have done it without them.  I would not have put enough information down for sure, without their guidance of how to do it.  I might still not have done it right, only time will tell on that one, but I feel much more confident having had that help that I would have done without it.

Having just claimed ESA for the first time too, I am now in the happy position of awaiting two medical assessments.  I just hope the rest of the process is kinder than the start of it, but as it involves ATOS, I am not holding my breath on that one!  No doubt further articles will follow as the journey continues J