Spanners in the works

I saw an article on the TV this morning about the difficulties and delays getting wheelchairs for disabled children - to the extent that they grew out of them before they arrived. And the empathy flowed. Our experience was almost identical when our son was younger - it should have got better by now, but apparently not.

I know we still have major battles with wheelchair services about every couple of years - he uses a supported seating system in a chassis that needs alteration as his back shape alters - otherwise it damages rather than helps. But the problem is wider than just wheelchairs. Readers who have been here for a while will be aware of the issues we've had with with other equipment - feed pumps that break down and never get serviced, hoists and slings that are made incorrectly, gastrostomy (feeding direct into stomach) tubes that don't get replaced after they've come apart in your hands, oxygen equipment incorrectly set up, orthopaedic footwear that takes 2 years to arrive and needs remaking at least 3 times, etc. etc. (see archives of this blog for details). People outside our enclosed little world tend to be horrified by things like this and assume they're one off failings. Unfortunately disability/medical equipment is in my experience, generally poorly designed, made from substandard materiels and inadequately serviced and administered. Like most of health and social services, it's subject to cost cutting and restrictions.

Failures of medical equipment are supposed to be reported via the 'yellow card' system and we use it almost every time. Unfortunately much of this equipment is used in hospital settings and if something fails there, the nurses simply throw it away and replace it - out in the community, we don't have that luxury, or a stock cupboard to call on. The result is that most users (in hospitals) don't report, so nothing gets done. We've more than once been told off by manufacturers for reporting breakdowns - 'no one else seems to complain'.

The current government response to the wheelchair issue seems to be not to insist things get better, but to suggest disabled people buy their own through some sort of 'direct payments' system. This won't work for two reasons - the equipment isn't standard, by the nature of disability it's personalised and often technical (how does someone with a cerebral palsy and a learning disability choose the right wheelchair and feeding system?), and experience of 'personalisation' so far is that it quickly becomes standardized - one size here, literally doesn't fit all.

I could rant all day on this but I guess you've got the gist. We understand more than most about this equipment, having had 28 years experience - god help families with a newly disabled child/adult, because there's no one else to advise you. (Please don't respond that you can ask an Occupational Therapist - their experience is limited, often to standard equipment, and how do you get access to one? - or even know that's who you need in the first place. I don't want to offend OT's, some are brilliant - some aren't and access to them is at best difficult.)