“Non ha un’altra infanzia”: la vita in attesa in attesa di sedia a rotelle

It’s incredibly depressing that the rules around who qualifies for a powered wheelchair are so strict that a teenager with a life limiting condition, half of her heart not working, has to instead rely on a charity because the NHS won’t help her. Or that a child who can self propel has been left with a heavy manual wheelchair with no access to a modern super light one.

I’ve dealt with wheelchair services myself, and at least in my area the criteria for powered wheelchairs is only centred on paralysis, and doesn’t take into account all the various energy limiting or chronic pain conditions that can cause someone to be unable to self propel a manual wheelchair. The rules are that only people who are completely unable to walk at home and outside 100% of the time qualify for a powered wheelchair. That meant I had to buy my own (and they aren’t cheap) because I’m not paralysed, even though I don’t have the energy to self propel due to fatigue. I’m also incredibly prone to joint dislocations caused by my disability (for example I once dislocated my wrist turning the page of a book) so was told by a specialist not to self propel as I’d constantly be at a&e with dislocated shoulders, elbows, wrists and fingers. Repeated dislocations of a joint cause long term damage and it would end up restricting the range of motion in my arms, hands and shoulders and or damaging joints to the point of needing surgery.

So despite being unable to work and surviving on benefits I was left in a situation where if I wanted to be able to leave my house (I really can’t walk far due to chronic pain) I had to buy a powerchair. It also needs insurance, an annual service and new batteries every few years which adds up. Without it I would be housebound, and sadly this isn’t an uncommon situation.