The failures of the NHS around Olivia are not news to you, our lovely readers. In fact I suspect if we were beings from another world with only this blog as a porthole to the services we would wonder how anybody gets anything they need most of the time. And for every story we have painstakingly typed about downright inefficient systems there are another ten I didn’t write, just to spare us all the misery.
My little girl is growing more and more distorted every day. Her damaged and addled brain is instructing her muscles to warp and it is pulling her little body in directions it was never supposed to go. She is slowly becoming distinctly “S” shaped, known as windswept cerebral Palsy – it’s frightening. Her back is becoming crumpled and when she lies down her shape won’t allow both shoulders flat at once. Her hip is dislocated and pulling her legs out of shape, so as one leg is now significantly longer then the other. She can barely support the weight of her own head. Her hands adopt a strange shape pointing outwards and her arms are impossible to lie down by their sides as they spring back up to a contorted position. This is just the start and her growth disorder will be having a similar effect on her internal organs.
The only thing we can do to help, not stop, but manage this process is good supportive sitting equipment. It doesn’t cure but may just slow down the extent of her distortion.
This is why kids like Olivia have special buggies, in fact every kid I know like Olivia has one. Except Olivia that is. Almost two years ago now Olivia was given some new wheels. However by the time they arrived (apparently it takes weeks to go 8 miles these days) Olivia had a little brother so had to suffer a double buggy for a while. By the time she started going places on her own she had grown so much that the buggy didn’t fit her. The therapist offered her a different, ill-fitting, more hideous, second-hand buggy. Clearly we refused it. We did some research, found one that ticked all the boxes (and was actually quite nice) and…surprise surprise…was told it wasn’t on their suppliers list so we couldn’t have it.
This was back in January on the eve of Olivia’s very serious winter sickness. Surprisingly we just forgot all about it for a while. By the time we could muster up the energy to reopen the buggy debate Olivia had started school and was going in her standard pushchair. Don’t get me wrong, we love her Bugaboo, and she’s very comfortable in it, but it’s completely inappropriate for a disabled wheelchair user. She can no longer really sit up straight in it so mainly lies horizontal in her distorted S shape. The quote for the buggy we liked was £2400 (oh yes) and the idiots at wheelchair services said they couldn’t help us any more but would happily offer a voucher to get us off their books. We could have £1050 (whoopde do) and waive any rights to any maintenance costs or specialist support for 3 years. Nice deal.
So we said yes. We’ll pay the difference because she deserves it and we were sick of their process, uncaring attitude and distinctly aware that at almost 4 Olivia shouldn’t be twisting about without any support all day. Two weeks ago I asked for it formally and was surprised when I was told because of budget cuts there was a waiting list for the voucher. Still, she said she’d send out the paperwork, and I received it on Wednesday. Without delay I followed the instructions (Sign & send to buggy supplier, sign and send back to us). Called the buggy supplier who audibly rolled her eyes and assured me I could pay the balance and have the buggy in fortnight, because Olivia shouldn’t have to wait, and they will wait for the authorities to pull their fingers out to pay the rest. I was hopeful today, as I called back to check she had got my the paperwork I had sent on. She explained it wasn’t the right thing and called wheelchair services on my behalf. When she called back I couldn’t believe my ears. Wheelchair services had told her the actual paperwork she needed wouldn’t be released till January. Budget cuts don’t you know.
January?
In my fug of anger and upset I politely thanked her for her time muttering something about having a think about it whilst the phone rang again, this time uncaring from wheelchair services. I don’t know why she called (other than to bang on about how she didn’t care) and as she told me she couldn’t be liasing with suppliers she didn’t know, Olivia would have to wait, what would we like to do…
I wanted to say.. listen to me love why did you even get me involved in your paperwork farce? How could you possibly leave a profoundly wheelchair bound child without a suitable buggy until she’s 4 years and 5 months old (if she lives that long). Why do you continue to patronise me and talk over me? Why have I made several phone calls and two trips to the non disabled accessible post office wasting my time, when all I want to do is help my child have a better life?
Unusually for me I couldn’t say any of it, I was lost for words and put the phone down.
My little girl is distorting everyday and nobody seems to care.
All About Olivia 