Thursday, August 30, 2018

Battling the system, as a special needs parent:

I've discussed in the past, on this blog, how my son does need a wheelchair. Partly because of his own disabilities, partly so that we, as a family, can get out and have a life. I've even mentioned, on here, how hard it is to sort said chair.
Well, it continues!

So, obviously, my son has grown. We decided to get in touch with the people who supplied the chair, to ask for his, fully adjustable, wheelchair to be adjusted. 
Simple ask, you'd think!

The First number, that came with the chair, was no longer in use.
Another number was supplied, they told us he would most likely need a new chair, but would need to be referred back by physio, for this to happen.
We called physio, who informed us that, as he hadn't been to physio for over 6 months, he would need to be referred back.
Off to the doctors, who didn't realised he could be referred to a specific physio, told us she would sort it out.

I've already written a post about this, in the past.
Now for the continuing story:

The doctor did figure it out, because we received a letter from the physio. The letter was a peach: because the appointment was just for wheelchair referral, and my sons problems hadn't changed, any health care professional could refer him!?

So, we've back in touch with the doctor, who has now given us a form to fill in (measurements etc), so they can refer us back.

Honestly, there aren't enough swear words to express how I feel about this sucks!


On top of all this, I've been form filling, for my sons statement in school AND for free continence products.

Yes, you read that right, they have finally agreed that he IS entitled to help with this. We've had 3 years of problems, now they finally decide to help?! 

That's more forms to fill in, and hoops to jump through.

Don't you just love our system for help with special needs children!? I don't get anything that I don't beg for, yet somehow people think it's so bloody easy!

The only thing that makes this worthwhile is my son's smile, every morning.


  1. You’re so right, it sucks. Nothing is handed on a plate - and all this on top of the extra struggles in the first place! It’s not right.

    1. It really isn't right, everything is such hard work x


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