asparagusmama (asparagusmama) wrote,

  • Location:
  • Mood:
  • Music:

update and rant!

Firstly, I don't have cancer :D Sorry guys for not replying to your comments, it was a trying time and now I'm paying for it with my ME and other symptoms.

Meanwhile, after over 3 years I have an answer to the seizures - some are ME, but most are migraine, which is a thing, apparently, and the weird micro strokes post flu have not happened again, so I'm not suffering from TBIs, and they can't really explain it. I did say how I got lost in the system for years, as some dick kept seeing initial, surname and address and not checking date of birth, hospital number or NHS number... after my MRI and EEG BK had two MRIs, a CT, two EEGs, and one where she had to wear a mobile EEG for a week, saw 2 neurologists, saw 2 neuroscientists, and had mindfulness course for people with head injuries. Meanwhile every few months for over 3 years I sent an email to my neurologists secretary, who apologised and sent the complaint to appointments who did nothing. when I pointed out my daughter had the same initial as me and had been seen on numerous occasions I finally got an appointment with an immuno-neurologist but no apology or acknowledgement for appointments at the John Radcliffe. So, here is a name shaming, the appointments department for the Oxford University Hospitals Trust are idiots!

Now my rant cut and paste from facebook:

So wtf is wrong with people - went for a long walk/wheel a week ago to calm down after {BK} was being... an autistic teenager... and was out in the countryside a way (coz I'm a bumpkin from the Chilterns [Midsomer] at heart) and someone phoned the police and an ambulance. Because sure, it isn't great being in a country lane without a path, but no more dangerous that a legged pedestrian or a bicycle or a person with a child in a buggy. It was a lane, not even a B-road. I was just tucking into bushes to let people pass about to cross over to the sudden path the other side when they all turned up. Yesterday on the way back from Sainsbury, I was having a long text convo with a stressed {BK} and suddenly two police officers turn up as someone had phoned the police because I had been stationary on the pavement for quite a while (I checked the phone long and from first text received to last sent was 9 bloody fucking minutes!)
First they cut the charity support, then the benefits, then the care, meanwhile the tabloids and C4 and C5 with tory and UKIP politicians declare war on the scroungers and hate crime against disabled people goes up 213% in 4 years and the UN issues 2 reports into the violations of disabled human rights in Britain - but now, apparently, people can just feel its okay to phone the police for you existing, on your own, outside your own house, in a wheelchair.

Finally I don't want to tempt fate, as the appeal panel who made the crap decision that BK had nothing wrong with her have 28 days to appeal, but our request was upheld and the court have overturned their decision, meaning we will get a second tribunal to look at the medical evidence on her autism and vertigo, rahter than have to go to the high appeal court in Birmingham. the PIP means the university can access extra government money diretly to provide her with support, otherwise her autism and dyslexia might not get extra support, so never mind the money for extra help, we need the status of it. And for her own peace of mind, she has been self harming while pushing ehrslef stupidly denying the autism and the vertigo because she was told she didn't have the symptoms and was coping. They causes untold harm to her, more than the DWP suddenly taking it away. Anyway, this is still months away, and we might still have to go to high appeal if the panel appeal the court's overturning of their unjust decision!

Prayers and positive vibes or whatever is your belief system please.
Tags: none
  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded