2019

I’ve had a little time to find the truth

(title is a line from the song A Little Time by The Beautiful South)

I’ve been thinking a lot lately about how much time simply being disabled takes.

Although there had always been the odd thing that took a long time or a lot of effort to sort out because of my disability it’s only really in the last year or so (since I started wearing compression and particularly since the carers started coming twice a day) that I really understood what people meant when they said being disabled takes a lot of time.

But suddenly I’m waiting twice a day for a carer to turn up. I get a rota but it frequently includes different times to the set one we agreed which can make it hard to plan. And it even more frequently gets changed and I don’t get told. Add in the fact that a standard across all care agencies is carers being allowed to come 15 minutes either side of the time without telling you and it all adds up to a lot of waiting. Anxiety too at times.

There’s the time waiting at the pharmacy and going back to point out they’ve got your compression prescription wrong but it’s so specialist they haven’t noticed (because apparently it’s too much to expect them to realise the prescription says you need medium and the packet says large).

There’s the time spent explaining (often again and again) that your disability means you can’t do that and what your access needs are. I once had to explain three times in one phone call that when I say I can’t stand unsupported I really, truly, 100% mean I can’t stand unsupported. They “checked with a colleague” and told me they would be able to do it with me sitting. I arrived, waited 45 minutes after my appt time and the first thing they said was “we don’t have adaptive equipment, you need to be able to stand”

Unravelling the bureaucracy of the NHS is a current bugbear of mine that is taking a huge amount of time. It’s been suggested I need something that most people could have done at the GP surgery. My wheelchair means I can’t. I’ve been referred to what appears to be the appropriate service, booked at appt (for February because what’s a three month wait?) only to get a letter three days later saying they’ve cancelled my referral and appt as I don’t meet the criteria. I should self refer to XYZ community service. Who when I emailed said “no, can’t do that for a wheelchair user.” So now I’m waiting again for a phone call with my GP (in two weeks) to probably be referred back to where she originally wanted me to go.

There’s the time spent trying to find out access information, then solve problems and/or find alternative places to go when you turn up and find out they told you what they thought you wanted to hear, or “forgot to mention the step” I refuse to ring places for access info any more. Email is more likely to land in front of the right person. And gives a paper trail when it goes wrong. But waiting for a reply takes even longer than ringing does.

A source of wasted time and frustration is all the phone calls. Listening to the recorded message on a so called “accessible tickets” phone line that takes ages to be answered and keeps suggesting “it’s quicker and easier to book online” when the first thing you see online is “please ring if you have access needs” Or having to book assisted travel on the phone because although you can book online the ramp never turns up when I do (because it turns out, the online booking gets emailed somewhere for someone to manually input on the system so when they’re busy it doesn’t get done. And they’re always busy)

The wheelchair replacement parts that take weeks and weeks to turn up. Often longer than you’ve been told. And they don’t tell you or the supplier about the delay. When you ask for an update you get told. With a shrug and a “that’s Sunrise for you”.

It’s no wonder that lately I feel like fitting everything in is a huge struggle and I just don’t have enough time is it?!

One Comment

  • Maggie

    Hi Emma
    I completely understand your frustration.

    I am currently spending most of my time between my son’s house and my own and it is clear that the non of the service providers communicate with each other.

    My son is fed via enteral tube. He was taken to hospital as he kept aspirating. In hospital when they hooked him up to feed, he told them they were using the wrong feed type. They ignored him as they were following the feed his notes indicated.

    He vomited after each feed and continued to insist it was because of the wrong feed. His condition deteriorated and It was only when I gave them a copy of his current feed invoice that they admitted they were administering the wrong stuff. The notes hadn’t been updated.

    However, as they did not stock that kind of feed he was sent home. We are non the wiser as to what caused him to keep aspirating.

    He is supposed to have water administered every four hours. He went 24 hours without. When he asked why he was told, ‘It doesn’t mention that in the notes’.

    I really do despair of the lack of communication between so called ‘Care Providers’.

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