Tuesday, 13 May 2014

a sense of obligation

Real life is over-rated in my opinion.

We seem to have spent most of the time since we got back from the hospice trying to get transport sorted out for N, to and from school.

When we made the decision to transfer her, one of the positives was that the County Council agreed to transport. They would not provide transport to her physiotherapy sessions though, so school and/or us need to sort out getting her to swimming and riding weekly - this is despite her physio being of the opinion that swimming and riding are useful to her, where 'ordinary' PE isn't really. Because, you know, she's in splints and can't actually stand without holding on to her frame.

She needs to travel in her wheelchair, because she is getting too big to 'transfer' in to a car seat and is too weak to climb herself.

Since this was agreed eight weeks ago, we have been to-and-fro and to-and-fro with them to try to find a solution. The job was put out to tender, but the tenders received were 'unsuitable'. Currently the sticking point is finding a tail-lift accessible vehicle. I'm pretty sure that if they do get a tender with a tail-lift vehicle, there will be another sticking point. 'Unsuitable' equals 'too expensive', in my experience.

I have spent the morning writing an email to the County Council, to try to get this sorted. It's taken me as long to find the email addresses out as it has to actually write the damned thing, because the County Council website is clearly designed to prevent members of the public access to any of the staff at all.

I am well educated, articulate, bolshy and on a mission; and my disabled child is still not having her needs met by the support services. What would be happening to her, and to us, if I wasn't?


  1. yes...what about the kids without parents like you to fight their corner. :(

  2. Ditto. I have heard this said so often by friends trying to get things sorted for their disabled son - and have thought it myself in the past for my daughter and support she needed - if I am finding it so hard, how on earth does anyone manage?

    And I know what you mean as well about those websites! Not jus local authorities but utility companies, phone companies, all sorts of people. They really, really don't want to talk to us.

  3. Is it me or are institutions becoming dysfunctional? It should not be this complicated to get care and services for a disabled child and family. I don't envy the added pressures it puts you under.

  4. How is it that some people seem to get so much, when they are much less disabled? It's probably too much to hope for, but could there be anyone at the hospice who knows someone with some influence? Or have you invited your local councillor to come and meet Nenna? Trying to get through the system from outside is incredibly difficult, but intervention from someone with influence makes a difference.

  5. Ah - just read your FB post and I see you have. Hope he can help.

  6. I've not gone to our MP yet. He's Jeremy Brown, and I can't say I have a lot of faith in him. Our local councillor is very nice and very efficient, though, so I'm hoping that will go somewhere.

    No response to this as yet, two days later, not even a holding response.