Tourettes Action

Slave Trade

Slave Trade

Today I’m really not feeling good, which really demonstrates what I’m going to have a rant about. I was in London yesterday at a Neurological Alliance policy group meeting. This is not something I could repeat on daily basis, I would struggle on a weekly basis so bi-monthly is just fine. Yesterday has left me aching all over with a monster headache and a clutch of mouth ulcers; I think I might go back to bed after writing this.

To cut a long story short the Guardian published this on Thursday - Somehow one particular part of the Welfare Reform Bill has slipped under the radar and has been missed by charities and the public, this isn’t difficult as like the NHS reforms the WRB is an immense document, the NHS reform bill (HSCB) is thousands of pages long and written in very technical language. Luckily somebody at the Guardian has got their mitts on a document relating to DWP meeting about this particular issue. Even the trolls and Tories a speechless on this one. This issue did come up for discussion yesterday at the NA meeting, I also received a panicked text message from a fellow ticcer who’s currently on ESA in the Work Related Activity group who received a letter in a brown envelope summoning him to a meeting at his local Job Centre Plus (JCP).

This article freaked me also, despite being in the support group I will be at some time soon be summoned to have another Work Capability Assessment at the local ATOS office, the outcome of this could be anybody’s guess. If I’m put in the WRA group I personally don’t mind doing work experience, but, here’s the big BUT and this applies to EVERYBODY in the WRA group regardless of their condition, it MUST be on their terms, when they’re well enough and ready. I would hope that they would accept any information about ME from both my TS specialist and my psychiatrist, not just generic TS information but how my TS and mental health problems affect me and how I could work. This anecdote may seem a bit inappropriate but it isn’t really, a guy on a dating website asked me if due to my TS that the best place for a date would be a noisy, busy place. He was quite surprised when I told him that the best place would be a quiet, intimate restaurant, otherwise the presence of crowds would trigger my tics quite badly and due to the noise I would find it difficult to hold a conversation and concentrate. This also applies to the ideal workplace for me, a calm, quiet office where my tics could be kept minimal and I could concentrate and work to the best of my abilities. I would hope also that any information provided about my condition would be shared with any supervisors or managers. Also I would hope that I would be allowed to work the hours that suited me and perhaps be able to work from home sometimes, as sleep is a big issue, I’m often very tired due to poor sleep and having to use public transport to get to a work experience placement would be tiring as being surrounded by people, particularly strangers makes my tics particularly bad. Hence the pain I am in at the moment yesterday was a particularly bad tic fest.

As I’m not feeling too good today, I’m just going to sleep on this until I get to speak to the boss to plan some kind of attack. So please watch this space. If like me you’re coping mechanism involves a dark sense of humour you might like this cartoon -