Saturday, 2 March 2013

Holding on

It's been a bit of a week really.  The Tourettes has been an ordeal to say the least, coming at full pelt with no respite and lasting long into the night before my little man can finally fall asleep.  We're all a little stressed and sleep deprived, and my daughter has come down with a heavy cold which isn't helping her tolerance levels.

Our only hope for help is Camhs - the child and adolescent mental health service.  It took me 4 months to get a referral from my GP who basically wasn't that interested, and then our first consultation was a little wishy-washy - (so my dear, how would you like to spend our time this morning?) Um hello...I have a shrieking child.  I can't fix him, otherwise I wouldn't be here....I was hoping you'd tell ME how we were going to spend our time this morning.  Anyway, she promised to refer us to a swedish doctor who apparently is the bees' knees with regards to Tourettes.  She tried to arrange an appointment on her computer, but actually couldn't work the computer.  I eventually showed her how to email me a presentation she thought I would be interested in, and I left, satisfied that she would send me a transcript of our meeting and a subsequent referral appointment.

Fast forward 2 weeks and still no communication.  I rang her and she said I needed to fill out a questionnaire over 7 days, grading Milo's symptoms before she could make me an appointment.  Fizzing with frustration, I managed to stop myself screaming at her "why did you not give me this questionnaire 2 weeks ago when I was in your office?'. Anyway, I kept my cool and assured her I would duly fill in the form.  It took 6 days to arrive, a faint, crookedly photocopied piece of nonsense - the information on which I had already sent her prior to our appointment.  I completed it and returned it.

Five days later, still no communication, so I rang again.  This time she is on holiday for a week, back next Tuesday, and no, no-one else can fix me up with an appointment, but a message will be left on her desk to call me.

I understand that there are funding issues here, and that all this jumping through hoops is a ploy to weed out those people who are really serious about needing treatment, and those who can live with it.  I've lived with it for years and now it's unbearable for all of us.  I feel at breaking point.  Sleep deprivation does that to you, as any new mother will tell you.

So my mantra today is 'just hold on'.  This too shall pass.  After the storm comes the sunshine.

My dreams are still swirling around my head, I won't let go of the hope.

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