Wednesday, July 28, 2010

Don't get ill if you're disabled

Chest infection has consolidated on one side - so six hours in Medical Assessment Unit to midnight last night and now on intravenous antibiotics. As usual, he emerged from hospital significantly worse than he went in, as he had been stuck in his chair for six hours and the lack of movement had made his chest worse. Unable to toilet him there - no appropriate slings etc., no bed and IV drip took two and a half hours and had to be held in place by us all the time. Asthma deteriorated significantly with stress/conditions, though not fitting too badly - yet. We go back there twice a day for rest of IV for rest of week - joy!

Hospitals don't work for people with disabilities. They're geared up for 'normal' people who are ill and can't cope with disability.

Oh, and after three days without support, still no prospect of a replacement nurse for day care. Don't get ill if you're disabled - and don't get a life either.


  1. Hi Nedd,

    I am saddened to read of your recent experiences. I do hope your wife is continuing to recover, but realise that this recovery will be halted due to the increased input in caring for your son.

    I am horrified to learn that hospitals are not equipped with the means to assist your son and that therefore the impetus is on you and your wife to facilitate his care. It is criminal!

    Unless we experience the difficulties you face - there is no way we can realise the continued stress placed upon you.

    I can only empathise - but this is of no use to you, and for that I am sorry.

    Anna G.

  2. Thanks for empathy. It is appreciated. Real scandal is that we know we're not alone in this - there are lots of others in our position. Part of reason I do this blog is to make the situation more visible - though it's a little embarrassing at times. If interested, you may want to look at Mencap's report, 'Death by Indiference' and the judicial review that followed it. Prof. Mansell has also just completed a report for the Dept. of Health on the lack of services for people with profound and multiple learning disabilities (PMLD) called 'Raising our Sights'.
    Reassuring to know someone's listening - need to get some sleep now.