Monday, August 8, 2011

Bitterness comes in many forms

Lots of things going on - most important, sons current health. We're now into the post chest infection, drug induced side effect rectification phase. Happens whenever he has a bad chest chest infection and has to use one of the more aggressive antibiotics. Grateful though I am to Dr. Alexander Fleming et al for antibiotics in general (he'd certainly not be here without them) - they are not an unmitigated blessing. The current one is quite corrosive and has resulted in a gastric bleed, (This has happened before, usually as a result of steroids.) so we're desperately altering his feed regime and stomache medication to stabilize things. Hopefully he'll get over this in a week or two and we'll have a period of reasonable health.

Life is complicated and painful for him and sometimes it gets me down not being able to take the pain away.

Meanwhile, we've put in a couple of formal 'yellow card' complaints about his feed system. One of which has resulted in a very apologetic 'complaints manager' speaking to us promising things will improve. I wait to be convinced. Talk on this is almost as cheap as the quality of their equipment. After some digging, I've managed (with a little insider help) to track down the NHS committee responsible for their contract and have had an approach made on the topic. It's time consuming and a hassle but money is what really impacts on them, so I'm 'following the cash'.

His official review stumbles on (one professional, in a public meeting, recently described the length of delay as 'obscene'). It doesn't seem to have made a difference though as both the key people from NHS and Social Services have declined to attend his annual operational care review as they're on holiday (where I used to work, if you couldn't attend at least you sent a substitute) - this obviously isn't high on their priorities.

It soon will be - I intend chasing this fairly vigorously in a week or so. I just hope they're rested from their holidays as they're going to be busy when they get back. (Holidays are not a luxury we, along with most carers and many disabled people, get.)

No apologies for sounding bitter - the care 'industry' has made me that way.


  1. Hello Ned
    You're not bitter, just determined. And quite right to be so as it shouldn't have to be played out this way.
    Best wishes

  2. Thanks for encouragement - it can feel quite isolated as a carer and outsiders views help feel I'm not just doing this on my own because I'm paranoid. (Or maybe I am paranoid about feeling paranoid - and so on!)