A Waste of Time

Regular readers will recall that we had a busy week last week and that the first appointment , when an assessment by a potential respite provider ,was cancelled with an hour’s notice. It was postponed until yesterday afternoon at 2pm. Joshua was at daycare yesterday, unusually on a Tuesday as they are closed for Good Friday so they offered me an alternative day. As the respite assessment was already in the diary, I had accepted the replacement Tuesday but had explained that I would need to collect him at 1pm, so it would only be a half day. This meant that given the half hour drive each way, it was not worth coming home so I filled my morning with fun jobs to do close to daycare instead.

I collected him at 12.45 and we drove home again, Joshua was exhausted and so I had built in enough time to have a nap and still be on sparkling form for the assessors. While he had a lie down in bed, I hoovered up , so that we looked our best, downstairs at least and my husband came in from the garden for the meeting. He asked if we had time for lunch before they arrived and I explained that I would warm the soup up but that we would eat once they had left. At 1.50, right on cue, Joshua woke up and came downstairs and I shut the dogs away, so we were ready…..

2pm came and went, nobody arrived. I was pacing at 2.10 and thought, as a family of late arrivals, ten minutes leeway is acceptable, even though they were only coming from the other side of our town. At 2.20 I called the facility , but got no reply. I decided that they must be on their way then and we waited longer, although I gave a starving Joshua his soup. I decided that if they arrived while he was eating now, it was their fault for being late. He finished his soup and still no sign of anyone so at 2.40 I tried phoning again and this time a nurse answered the phone. I explained our situation and asked where the two ladies were? She sounded surprised saying that she knew nothing of our appointment and if she had done, she would have called me to let me know that they were both off sick so would not be coming!

I was livid : this was the second time that they had not turned up so had ruined two days plans : I had taken him out of daycare early for no good reason and nobody had even told us, I had had to chase them. She apologised when she realised how cross I was, although I kept my temper and was always polite. I asked why she had not seen our appointment in the diary and she laughed, saying that the two seniors control their own diaries, so she had no access to them. Through gritted teeth I remarked that this system does not work then does it! She said that she would ask them to call me back. I stressed that , presuming they have Covid, which she was not allowed to confirm, that I did not want them to call until they were fully better and back in work. This is not the first time that I have felt that professionals value their own time more highly than ours as parents. The implication is that because we have a disabled son, we will be sitting around at home waiting for a professional to brighten our dull day with their visit. But the reality is that, now that lockdown is over, we have busy days and we make plans, so their painful meetings have to be slotted in around the fun stuff.

My request not to be called back immediately was , of course, ignored and one of the ill Seniors called me ten minutes later from her sick bed at home! She was mortified that she had missed our meeting as she had felt too ill in the morning to check her schedule – I explained that if she was off sick, she should not have to do that. We chatted for a while about Joshua’s needs and what hours of respite we were looking for, so by the end of the call I wished her a speedy recovery and I felt much calmer. But I was still irritated by their lack of efficiency and our wasted time – not to mention, unnecessary hoovering! – and the reality is, they are now going to have to be really impressive for me to trust them to place our precious son into their hands overnight. If they cannot manage a meeting, how on earth will they be able to manage Joshua for a weekend to my satisfaction. If we had the luxury of choice, I would be telling them not to bother getting back in touch as they have blown two chances already. But the reality is that while our previous provision still has no staff, this might be our only hope of respite, but what a choice to make. I will try to keep an open mind when they finally manage to keep an appointment and when we finally get to look around the facility, but the odds are heavily stacked against them.

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