When Life Gives you Lemons….

…well, given the changeable weather, I can’t decide whether to make a cold G&T or a hot toddy, but whatever, I’m determined to find a positive outcome to this latest curve-ball.
What else can you do? It’s the only way I can deal with a difficult situation, and what carers do in general. Life knocks you over – quite a lot - and you just have to dust yourself off and get up again.

This is a bit of a rant, but do hear me out as there is a positive reason for telling this sorry tale.

I wrote last year about our disappointment when Nick was expecting his new electric wheelchair and we waited in on the most glorious day, one of the first delightful days of that long hot summer. We were very excited because the old wheelchair had finally given up the ghost and wasn’t safe to use anymore. The NHS order the product then the delivery and fitting is carried out by a company called Ross Care.

We waited and we waited, but the wheelchair didn’t arrive. The delivery had been scheduled for 9am. I called Ross Care switchboard and was told the engineer was running late but would be with us by lunchtime.
I phoned several times during the course of that long, hot afternoon and kept being told someone would be with us shortly. At 4pm Nick went for his afternoon sleep and at 5pm I left, desperate for some fresh air and sunshine. Such a waste of a day.

When it did arrive, a couple of days later with no warning, there was no fitting as ordered as a matter of course by the OT at the wheelchair service, no contact with me as urgently requested, just bunged in the hall for Nick to trip over.
We were just pleased to have it at all, though it was a clunky old beast and the power pack was always a pain to dismantle when you wanted to fold the wheelchair up to go in the car. I complained to Ross Care about their poor service but never got a response.

Fast-forward a year to yesterday afternoon – another beautiful, warm sunny day after several weeks of really yukky weather. Last year’s wheelchair had started to fall apart and Nick has had a new once since the beginning of May. That took two no-shows and three afternoons of waiting in too, but we were glad to get it at last except that the battery was flat on the power-pack so the engineer took it away to test and said he’d order a replacement.
The call history on my phone tells a story as I see I had called Ross Care at least once a week for the next six weeks and several times on either side of my holiday, in an attempt to get the chair fully usable. Every time I rang, a receptionist would say that she’d look into it and call me back.
Returned calls to me from them? Ha. I’ll leave you to guess.

I kept calling, of course, because that’s what I do. So we were both delighted to secure an appointment at last, for this week, a fairly reasonable slot of 1 – 5 (some organisations require you to wait in all day) and a firm promise that the engineer would phone beforehand to make sure we were home.
Instead, I arrived just after 1 to find the newly assembled wheelchair blocking the small hallway so Nick had already got into a tangle with it when going to the loo.
No call. No fitting. The engineer had been in and out and gone by 12.45 and when I tried to move the wheelchair I couldn’t budge it because an electric wheelchair needs a key to turn it on and he hadn’t brought one.

More phoning. Thursday is Nick’s precious night out and I had awful visions of him not being able to go. The receptionist kept saying that she would “try to get hold of“ the engineer to ask him to come back and leave us a key, but after four hours of me phoning she had still not managed to contact him. Where was he? Scotland? Space? Or maybe just listening to loud music with his phone off. Maybe she just hadn’t bothered to call him at all. Who knows.

I made one last call – being friendly and polite throughout because it really doesn’t pay to piss off the receptionist - and asked her to put me through to a supervisor: someone with the clout to order an urgent delivery of the missing key and a proper fitting to make sure this time that all elements were in place and doing what they were supposed to. She promised to get someone to call me straight back.
Three days ago. Still waiting.

So – we did go out that night and had a beautiful drive out to the hills for a drink in a country pub. Nick had the simple solution that we would just take the power pack off and use the wheelchair as we have been anyway, manually so that it folds up in the boot of the car. Same as we’ve been doing for the last two months, then.
It’s a new month tomorrow and I will gear up again for more telephoning even as I think how bloody infuriatingly boring it is to have to do this over and over again.

And why am I telling you all this? Partly to share my frustration of course and have a good sound off to a captive audience, but more importantly, this: - I’m genuinely horrified that once again, organisations and different departments of the same organisation, are not communicating with each other, to the detriment of the service user they are working for. And that this seems to be completely normal.
In what world is it normal for a mobility specialist to deliver a wheelchair for an impaired person and not bother to check whether all the parts are there and working? To leave an impaired person stranded due to wilful neglect of the equipment that was meant to help them?
As far as I can see, the NHS wheelchair service (which has a waiting list longer than the coast-to-coast walk) issues an order for the product in good faith, with (both times we’ve experienced this) the understanding that the equipment provider will make sure it properly fits the client. And that it works, of course.
What actually happens is that the provider just sends out a delivery driver to each address, no nonsense with fitting or checking, boom, on to the next one. AND PEOPLE PUT UP WITH THIS. I talk about the Nick factor but really, this cannot be happening only to us.
There has been too much blank mystification whenever I have talked about fitting. Too much “Talk to the hand” when I phone to raise a concern. Too many failed attempts to contact their own delivery people, especially when a job has not been completed or gone wrong. Too much radio silence from top brass, whoever that is. My suspicion is that this happens to a lot of people, not just us. 

This isn’t right. It’s yet another example of the sickness at the heart of our social care system, the fact that organisations simply do not communicate effectively with each other or even inside their own departments. The whole system seems to be run a bit like Bletchley Park, fragmented and compartmentalised, sometimes with no clear lines of communication at all between the areas who you’d think would most need to talk to each other. What do we do about it? Especially when most of us are already on our knees as it is.
Well, I think the only thing to do is talk about it and make a fuss. Do NOT put up with bad communication and terrible service. We have to address this not just as aggrieved consumers but as problem solvers, the very people who can actually point out what needs to change. 
I think we have to see that we have power, as all consumers have power. 
I will continue to call Ross Care until Nick gets his wheelchair sorted, but (with my old community development head on) I'll also ask if we can talk constructively about improving their service. No company can be so arrogant that they don't want to do that, surely. Or am I being naive? 
Anyway, we'll find out. Things only change when enough people have had enough.