Living with chronic conditions means that there are certain things you need in life that you wouldn’t normally need; things that become essential rather than just a want. Your house becomes filled with gadgets and gizmos to open things, chop things, pour things and basically clutter up your life! None of the products out there are cheap and so to help people with disabilities there has been a move from Disability Living Allowance to the very PC ‘Personal Independence Payment’ known as PIP. The concept is a good one; the payment is to assist those with chronic illness or disability to become more independent which is something those of us who live with conditions strive for.
So, let me express my feelings about the whole process…it is shit! Pure and simple! From completing forms, to attending assessments the whole thing is degrading and humiliating. You spend hours writing information which of course affects your hands because you struggle to write at the best of times, taking breaks and meaning that the document that should take roughly an hour actually takes over a week. Then as expected you are invited to attend an assessment…this is where the real crap kicks in.
Don’t get me wrong, I genuinely feel for the people who undertake these ‘assessments’, after all they have a job to do where I’m sure their manual tells them to be as distant and void of emotion or empathy as possible. So you go through all your answers again in minute detail having to answer questions on personal intimate care, suicidal thoughts and general mental health as well as the difficulties you face every day to someone who doesn’t look up from their computer screen…at all! You feel like you are having a conversation with yourself and when you’re trying to describe your most intimate thoughts and difficulties you shut yourself up because you know that person isn’t interested in the slightest. As someone who finds it difficult to talk about the effects of RA to others, this process is excruciating. It’s an hour of emotional hell where you question what you are saying because there is literally no response.
The physical exam is a joke! Asking you to do things that are a) unrealistic because you don’t stand on one leg as a daily activity…especially when you can’t and b) are assessed as fully functioning when you can’t complete what they are asking! The assessors have little to no understanding of the variations in conditions on a daily basis, never mind hour by hour. They assess things you are not aware of, like opening your purse (which you have spent years adapting how you do it to achieve the task). There seems to be no consideration of just because you can do something at that specific moment in time, you can’t do it the next or that just because you attempt to walk it doesn’t mean that you aren’t in huge amounts of pain doing it.
As survivors of chronic conditions, we tend to be more determined and stubborn to do things regardless of the pain and awkwardness. We get on with it and then suffer the painful consequences later. During the assessment there is no room for this type of discussion. It is cold, impersonal and devoid of human interaction. You come way feeling as if you’re making it all up, as if the way you feel both physically and mentally is something you should just deal with. When I say it sends you on that spiral of self-loathing, I’m not exaggerating.
Of course, as expected you receive the letter that states you have scored zero and therefore your condition and daily struggles are not recognised, but you can appeal. Great! You can spend money and time you haven’t got trying to provide more evidence for them to say; yes you guessed it…NO! At this point it’s easy to give up. The emotional impact is incredible, affecting everything you do and of course the stress sets off more flares and fatigue.
The only reason I agreed to go to Tribunal was because of my specialist and clinical nurse pushing me to do so. If they believed I should have PIP, why wasn’t their professional opinion enough? Again, more evidence gathering and letter writing to appeal and then the waiting for a date…and waiting…and waiting. 7 months after my original application rejection the court date dropped on the mat. You feel sick with anticipation…but not in a good way.
On the day of the Tribunal the anxiety kicks in; that nausea in the pit of your gut, the inability to breathe and the uncontrollable panic. If the husband hadn’t have been there I know I’d have left before it started. As usual he managed to calm me and supported in every way that he does every day…I am very lucky (not that I like to tell him often). The panel consists of 3 professionals; a doctor, lawyer and disability specialist. A representative for the DWP was also present to argue their case. I won’t bore you with the details but suffice to say it was an emotional rollercoaster, but I felt listened to which was the most important thing in the world. The arguments the DWP gave were weak and unfounded…apparently if you can use a laptop you can cook a meal!
After 7 months of pure crap, I was awarded PIP. I won, which is a relief and to be honest it’s more about the recognition of having to live with a crappy condition that I never asked for or brought on myself. The fairness of the system seems to be off balance and very much floored. The PIP will support with prescriptions, hospital car park charges, much needed gadgets and gizmos, saving towards house adaptations needed and paying for assistance in the home. It’s not a huge amount but it will support my independence. I keep being asked if I’m going to book a holiday from the back pay I will receive…my answer…no, it’ll go towards the things I need to make my life as independent as possible. Some of us who are fortunate to finally receive PIP realise that the payments are for a purpose.
The message is…don’t give up but surround yourself with support!