now, muscular dystrophy patients who attended the ventilator clinic at wythenshawe hospital up in manchester, can’t. a patient found out by chance whilst cancelling an appointment, that they’d turned the clinic into a covid-19 intensive care unit. no letters were sent out and no phone calls were made to explain what to do during the pandemic. the clinic just doesn’t exist anymore. “we’ve just been ditched.” said another patient fi anderson. one patient’s ventilator has been playing up and she can’t even get hold of anybody to repair it, never mind get supplies. they are holding on for now.
fi got me in touch with john pring of the disability news service (dns). he covered the story of us “expendables”, here and here. my own nhs trust have now backtracked and said they will provide filters for both the cough assist and vent, but to change them every 10-14 days instead of 7. i feel this is only because of the backlash of their initial advice. i’ve been sent 5 filters! sophie grubb of the bristol post ran a story on this too. it looks like my nofilter post ruffled a few feathers and i do appreciate this story being picked up. my mate sanjeev mann up in scotland also wrote an article for bbc’s the social regarding critical care. it’s priority that disabled people are treated fairly and not discriminated against due to the government’s lack of preparation. we are not second best. stop the roulette wheel!
i will be setting up a facebook group called resp repairs & supplies. if you have any similar stories please let us know. most importantly if you need supplies or you have a problem with your equipment please get in touch and we’ll see what we can do and at the very least keep others informed about what’s really going on across the uk.