I've been sitting in waiting all morning for someone to come and service our sons track hoist (promised between 9 and 10 am today). No sign yet and no phone call to update us. We have to go out for a hospital appointment soon, so may not happen - again. I accept this isn't life critical, and everyone else has to wait in for deliveries that don't arrive - the difference is we have these things as well. I suppose having little money means we can't buy much that needs delivering, so maybe that balances out, sort of.
More critically, the rechargeable batteries on his suction machines (to keep his airway clear) are getting to the end of their life. This is life critical. We've been asking for them to be replaced for some time now and it's now got to the stage where we haven't time to charge one before the other cuts out. We have got one replaced at last, but only after repeated phone calls, a considerable amount of pressure and substantial stress. We have a promise of replacing the other one later.
This is normal - we have another piece of medical equipment that's been held together with sticky tape (come back Harry Potter's glasses, all is forgiven) for about 2 months. The replacement bit has just come off 'back order' and is soon to be dispatched we're told. It certainly isn't here.
This in a context where we have to plead to see a consultant about a gastric bleed in less than 2 months - after much pushing and shoving of GPs, local A&E and consultant we have now got an appointment. A care service review that has taken a year to progress very little only moves when we push it.
On bad days I feel the delay itself on things is a tactic to let him deteriorate so he'll no longer be a problem. This is of course paranoia and there isn't a conspiracy to kill him off - but that will be the outcome if we don't keep fighting these delays. My worry is for those other people with complex care needs, with less articulate carers or no close relatives fighting their corner. They presumably do die, quietly, in the back rooms of nursing homes or on hospital wards. At least my son has a life - but they should have too. (For hard information on the scale and seriousness of this problem, see the Mansell Report done last year by Kent University for the Depart. of Health. - It isn't just me being paranoid.)