Accidental Activist

Those who know me now, would never believe that prior to my genetic disorder progressing, that I was shy, quiet and the phrase "wouldn't say boo to a goose" was designed for me.


Now, however, I'm outspoken about my situation and try to use my experiences for the good of others.


One prime example of this was a fantastic opportunity to speak to the DWP about the change from Disability Living Allowance to Personal Independence Payments.  Disability rights are understandably close to my heart, not just for me, but for my aunt who has complex needs post car crash, and her partner who has a progressive neurological disorder.


The meeting was on the morning of Wednesday 4th April,  a consultation that the Papworth Trust had organised with the DWP. It was interesting to meet other people who were going to be affected by the changes, and fascinating to see the different areas that people were concerned about as part of the changes.


One of the areas I was most interested in was the "Taking Nutrition" section, as I felt that the two options given regarding artificial nutrition didn't really reflect the reality of life with a feeding tube. I was fortunate that on the table I was on, one of the three areas we had been asked to discuss included nutrition.


I had the opportunity to speak about the reality of life attached to a tube 24 hours a day, the risks, the pain, the infections, the difficulty with mobilising etc... Kieran from the DWP listened intently and wrote a mini essay on what I said. I hope that I have made a difference. He gave me a link to the DWP site that discusses the changes and the plans, and most importantly an email address so that friends in similar situations could also go and feedback their opinions.


For all those reading this, who will be affected by this either now or in the future, please take a few minutes to look at PIP and make your comments. For those with children, remember that although this may not affect them now, in a few years they will be in this situation.


I learnt a lot about how the new system will work. The forms will be a lot less complicated, as abilities will be seen as transferrable- so if you can't chop vegetables, this will be extrapolated to other skills that need this function. I think there could be a steep learning curve in that respect, as the assessors on the whole won't have these restrictions, so may not think about how a problem in one area could manifest in another, although I know  there will be training, unless you have actually faced the problems, it can be hard to completely understand the impact that it has on a number of areas of your life.


I'm glad I had the opportunity to attend this meeting, and hope that the points the meeting as a whole put forward will be incorporated into the final PIP assessment.