Wednesday, 1 June 2016

Next week is Carers Week

Being a carer isn't always straightforward - even if you're clear about the extra things you do that constitute caring, sometimes people around you don't get it.  The first time I approached the reception desk at the gp surgery for example, and asked to be added to their Carers Register.  

'So, who do you care for then?'
My son, Smiler.
'Oh they don't mean that kind of carer, it's just for people who care for someone with a disability'
Smiler has a disability.
'But you're his mum, not his carer'
I'm a parent carer.
'What's wrong with him then?'
He has a unique chromosome disorder
'I'm not sure that counts...I'll just check with someone.'
'No, I'm sorry, it just means people who are proper carers, for adults.'

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And a week later, having checked with the Carers Support Centre that the gp Carers Register is intended to include ALL carers, I gave it another go.
'But children need so much looking after anyway, I don't think it matters if he's disabled'
Well, he's entitled to DLA, which means he needs "substantially more care than another child of the same age without a disability"
'What was it you said was wrong with him?'
Severe learning difficulties, epilepsy, haemophilia, microcephely, specific language impairment, sensory integration disorder, scoliosis.  He's non verbal and doubly incontinent. He has nine consultants that's he sees at least twice a year (each), four different regular medications twice a day and another three that are PRN.  He can't weight bear so is hoisted in and out of his wheelchair from bed or a beanbag.
'Oh.  Okay.  I'll tick the "carer" box on your records then.

But why does it have to be do hard?  I don't want to have to list Smiler's health issues to a receptionist, and I don't see why I should have to.  If I was caring for my elderly dad, or my partner, would I be expected to explain 'what's wrong with him'?  I should point out that this conversation was years ago, but I regularly talk to other parent carers who face similar challenges.  While (and I quote the surgery receptionist here) "proper carers", as in carers of visibly disabled adults, seem to be acknowledged, there's still a long way to go for the rest of us. 

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This is the first post in a short series that I'm writing for Carers Week, which begins on 6th June.  For more info see the Carers Week website, and for events and general goings on next week in Bristol and South Glos check out the Carers Support Centre news page.

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