I’m back online after nearly 3 months of tri-weekly visits to my village library (soon to be closed due to council cuts), and it’s just a matter of time until I’m back to speed. It’s quite hard to define what I actually do in my role of voluntary policy officer, in essence it’s my job to keep my ear to the ground with regards to the world of politics and disability rights and research those news stories that will effect us ticcers, at the moment I have about 3 projects on the go; firstly as you know Cameron and company have recently been making some changes to the welfare system so I’m currently looking into the welfare reform bill, translating into English and will let you know how it will effect us shortly. Secondly, I’m putting together a guide to help other people with TS make a successful application for DLA and thirdly following a conversation with a guy I met at the recent support group meeting in Birmingham (a big thanks to everyone who came, it was great to meet you and hopefully see you all again soon!) I’m doing some research into the Disability Discrimination Act and TS – I think this could be a mammoth task! Oh, yes I forgot to mention that I also represent Tourettes Action as part of a campaigning umbrella organisation called the Neurological Alliance neural.org.uk/ recently I attended a parliamentary reception organised by them at Westminster. I have also somehow landed the job of being group support officer for the Birmingham TA support group! This could only happen to a leftie-tree hugger like me!
Getting back to policy work, I work from the comfort of my own home, when the government want to make changes that may effect us, for example the recent white paper that was published outlining plans to replace DLA with the new Personal Independence Payment (PIP) it was my job to write to the DWP (Department of Work and Pensions) to tell them what I thought about the proposals and how they would affect people with TS, I also put together a letter that could be sent to MPs urging them not to vote for the reforms. Now the consultation has closed I sit back and watch the news (yesterday I found out that my local NHS trust will axe 560 jobs, mainly from mental health) and hope that they’ve taken on board what I’ve written. If you have any questions you’d like to ask, or anything you’d like me to look into please don’t hesitate and get in touch.