Due to a technicality in the benefit system, I am not eligible for the means-tested support for ‘the most vulnerable’ households
I have a severe, life-limiting form of muscular dystrophy; my condition is progressive. My parents’ home where I live contains lots of medical equipment that keeps me alive and in the community, saving the NHS hundreds of pounds per night and keeping a bed free for those in need. Needless to say, all of this equipment requires energy – and this costs a lot of money right now.
Keeping me out of hospital entails ensuring that lots of medical equipment is continually charged. I use two ventilators, two ventilator batteries, one power-chair battery, one gastrostomy feed-pump, two suction pumps, one electric bed, one electric hoist, one cough-assist machine, one microphone amplifier and monitors to check my breathing when no one is in the room. I also need three hot water bottles night and day, to keep me warm in my power-chair and in my bed. That’s the baseline; additionally, when I’m ill or tired, I have to use an oxygen concentrator, a nebuliser and Sats machines. I wouldn’t be able to survive without the above equipment.
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