Tuesday, April 17, 2012

Look in your own back yard

It always surprises me when NHS and Social Services officials look disbelieving and stunned when someone points out to them exactly how disabled People with Profound and Multiple Learning Disabilities are, and how many of them there are in their area.

At a meeting today where this was spelt out and the 'officials' reactions were very sympathetic, but they were surprised. They shouldn't have been. In the audience (general carers in the county including elderly etc.) were parents of at least four people I recognized who have these complex care needs. Things like being non verbal, unable to walk, unable to swallow, needing oxygen and/or airway protection on top of learning disabilities, epilepsy etc. etc.

They should know. We've been telling them for years what the issues are and the Raising Our Sights report made it official in 2010.

I'm fairly convinced that the real reason is that they are expensive and difficult, so they get passed on and on until they get dropped or a crisis takes them out of the account. This may be their death, or their being shunted into the back room of a mediocre nursing home where they're left to scream with the radio turned up so no one can hear them. (This example is real - the lady in question was 'rescued').

I don't think the officials are bad people. They just don't want to believe they are failing these people so spectacularly.

And saying 'I don't know how you do it.' sympathetically, to a carer who is doing it 24/7 isn't even patronizing - it's insulting.


  1. I hate that line "I don't know how you do it." Well, neither do I, but I sort of have to. Because I know no one else will.

    I honestly despair. I don't know why things become so complicated. People need help, you help them. Surely it's not rocket science. I've seen that "deer in headlights" look so many flipping times.

  2. I think the deer learnt the look from me, when we first looked after my son. It eventually changed to 'just getting on with it.' Have to say, my wife got there long before I did.