"I'll start with a little introduction, although the above may well tell you quite a lot already.
I was 23 when I was diagnosed with this condition. At that time, I knew nothing about it and didn't want to know anything about it- complete denial. I never wanted help and I didn't want to talk about it.
16 years later, a massive sense of realisation overwhelmed me. You see, I wasn't alone with this; my elder brother was diagnosed with the same thing, at the same time, and I could see a noticeable deterioration in him. He developed more of a reliance on a powered wheel chair; it was also at this time that I myself was contemplating walking aids/apparatus.
Along with my and my brother's progress, I was catching stories on social media and in the national news about the Duchenne strain and the young people who were suffering because of this awful condition. All of this in front of me triggered something. From May 2012 I have been writing and shouting from the rooftops about muscular dystrophy; I needed to say something to contribute towards the fight against the condition, towards people's rights concerning welfare and well being for those with the condition.
On the 15 March 2013, I attended a Muscle Group for the very first time; this was an opportunity to gather with other people with certain strains of muscular dystrophy and meet David Moore-Crouch from the Muscular Dystrophy Campaign. The main thing on the agenda was PIP (Personal Independence Payment), and thankfully, the people in the room were as passionate as I was about the introduction of PIP.
PIP is to be rolled out in April 2013 and is set to replace the DLA (Disability Living Allowance) benefit. People already receiving DLA will be moved across to PIP in 2015.
It is my understanding that the idea of PIP is not only to eradicate the use of the word 'disability' within the title of the benefit scheme, but to also to throw a trawler net out in to society to catch people that may well not be being honest with the benefits system which, to an extent, I agree with.
However, when the discussion gets underway it is quite clear to me, with my life experience and condition, that there are some major flaws here. PIP and the form to claim PIP is quite simply two parts, a daily living component and a mobility component, to be assessed by a points system, a scale of 0-12. Score a 0 and you'll not qualify. Score a 12 and you'll get paid the higher rate of the benefit.
Herein is my first issue. It is well known that people with neuromuscular conditions tend to be fighters; very determined people who like proving others, and indeed sometimes even themselves, wrong with their ability to do things others say you cannot or should not do. My fear is that it's this attitude that may well count them out of the benefit.
"Can you stand and walk 50 metres aided or unaided?" Yes, I probably could. Tick the box, 0 points, benefit lost. There is no clarity here. How did I get to standing up? How long did it take for me to stand? When stood, how long does it take to walk those 50 metres? Would I be affected after I had done the walk?
Anyone with my condition will know it's impossible to stand without assistance. It takes a while to get to the standing position, so it would take me quite a while to walk 50 metres, and by the end of it? I would be completely and utterly exhausted; chances are I would not be able to walk 'safely' for a good few hours afterward.
This prompted David Moore-Crouch to speak about a lady, who was recently in a discussion about PIP, and like others, was very proud of what she could achieve physically. However, when told that her outlook and positive attitude towards the application would probably lose her place in the benefit scheme, this immediately changed her positive mental attitude to a point where it was said that she would hope that by 2015 her condition had worsened to the point where she'd be wheelchair bound. Just imagine that. Imagine hoping for progression in your disease so you can qualify for a benefit under these new rules. This should NEVER happen.
There was also talk of physical assessment and importantly who would carry out these assessments... ATOS, that's who!
You may well be assessed by an independent healthcare professional that has no knowledge whatsoever of ANY neuromuscular condition, giving yet more of a chance on losing out on a benefit you're entitled to due to lack of experience and knowledge.
So, say you get there, say you qualify and your much needed benefit goes to your bank/ building society as your DLA did. You get the care you need and you get the mobility you need (car or carer), at last some reassurance that you have this security and we can now relax as we once were... WRONG! With PIP even if you have a condition that sees you in a head strap, wheelchair and a lift to get you in and out of bed, you will need to be assessed either every 2 years or every 5 years! I found this extraordinary and alarming! It was supposed to save money? Re-assessment, more admin, added stress to patient/claimant which I feel could go on to cause stress and apprehension.
So you see I'm not very happy at all with PIP and lots more needs to be done before people on DLA are moved across from DLA in 2015.
As for the Muscle Group, it was great! Great people that I honestly wish I'd have met sooner. We are fighters and I'm so very proud of myself and all those that attended to voice opinions, we certainly won't be told what to do and we'll fight for others too."
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