theexpendables

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.

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28

as much as i tried, my body somehow managed to survive the old 27 club. through the heartbreak, head fucks, alcohol and most recently lockdown, i lived. i think i might of even concocted some purple drank in my body at some point too. it might sound depressing, but i’m a bit disappointed. going down like kurt cobain and jimi hendrix was kind of exciting. i’m guessing it wasn’t meant to be and i’m sticking around instead.

last year my bday was bittersweet, but ultimately one i’ll always keep in a special place. here we are again and the landscape of everything has changed. this marks my first and hopefully last birthday in lockdown and although it won’t be filled with all of my usual out out stupidity, i will get to spend it with the 2 little humans i love most. the kids are coming to stay, we’re having a bbq, lighting a fire in the evening and eating marshmallows. happy birthday to me! we will hopefully be joined by the rest of the fam via zoom link and i will be making some juicy cocktails. which is really just an excuse to sing tequila-la-la-la with my tongue like the absolute pervert that i am. 

the dance floor will be my patio, the dj will be myself and the disco lights will be my disco light bulb, but it will be a party nonetheless. shania twain on the ready, let’s go! 

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theresponse

last week i sent a pretty hefty email to the respiratory team from the nhs university hospitals bristol. then it got picked up by john pring at the disability news service. here was the response i received. 

“dear mitchel, *i’m so expendable, she couldn’t even be bothered to spell my name right.*

i apologise that you have been unhappy with our service during the covid pandemic. *sorry no. 1.*  these have been unprecedented times and as a result our service has had to respond quickly to the pressures and demands that we have been faced with.

with regards to the respect form, i apologise if this has offended you. *sorry no. 2.* many of our patients have wanted to discuss this, especially due to the uncertainty about coronavirus. the trust initially had the policy that all patients admitted to hospital were required to have a respect form completed- therefore we were attempting to be prepared for this. now that the peak with coronavirus appears to have plateaued, we are able to start returning back to our usual way or working again. *that was quick.* however, i do apologise if this has caused you any distress. *sorry no. 3.*

with regards to filters; there was a national shortage that we needed to respond to quickly due to the coronavirus pandemic. as many other home niv centres have not previously used filters for their ventilators in the community, and these centres have not shown evidence of increased infection rates, as a service we decided to respond to the crisis by also stopping filtering in the community. 

filters were essential for acutely unwell inpatients with coronavirus with the aim of reducing the spread of coronavirus between patients and healthcare workers during the peak of the pandemic. now that the peak appears to have plateaued, we are again reviewing our service and our policies in response to this.

we do not yet have a supplies available to routinely start sending out filters for ventilators again, however i have taken your request forwards for discussion and i will get back to you once it has been decided if we have the resources available to start to at least look this on a case by case basis. i will be in touch shortly with a further response regarding this. 

in the meantime we have been able to provide filters for your cough assist and these will be sent out to you. *ah ok, that’s a change of tune.* we would ask that if you feel you can reduce the frequency of changing these filters, perhaps changing them every 10-14 days rather than 7 days, this will help to preserve your stock. this is also the approach that other home niv services have taken nationally in order to respond to shortages of consumables. *just imagine if our government had enough of anything in the first place.*

*follow up response.* i have discussed the issue regarding filtering in our team meeting this afternoon and as a service we are not in the position where we can send filters out for ventilators. therefore please continue to use your ventilator without a filter in situ as per previous advice. *and once again, on your own disabled peasant*

kind regards

dominica horton

niv lead physiotherapist

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nofilter

this is the next instalment of my “onyourown” series. i had a telephone “appointment” with one of the physio’s from the bri a couple of weeks ago. i was told that once i had ran out of bacterial filters for both my cough assist and ventilator, that’s it. i’ll need to use both machines from then on without a filter. i also didn’t appreciate being asked about “respect” forms and dnr’s, it came across as pushy, insensitive and actually discriminative.

the ventilator is one thing, but using the cough assist without a filter is disgusting. day to day with no filter is bad enough, but when i’m unwell with a chest infection and i’m regularly coughing up thick mucus, then what? this can’t be good for the machine itself, is unhygienic and could affect my health. it even says in the user manual to use a filter “bacteria filter: the filter, which protects the device from entraining foreign material from the patient, can be left in place as long as it is not blocked by sputum or trapped moisture.”

i was told there was “no evidence” that filters need to be used in a home environment. what’s the difference between a hospital and a home environment in terms of filter use? if they aren’t necessary, i want to see evidence that says so. if they aren’t needed, then what are they made for and why have i been using them for my machines for the past 5-10 years and been told to regularly change the filters, especially when i’m unwell?

i also find the timing very interesting with coronavirus. i looked at buying the filters myself, but everywhere i looked is out of stock. this is totally unacceptable, i’m not happy with using my machines without filters. i should be provided with them.

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chooselife

my blogs were getting pretty deep the other week. i took a step back from blogging and i thought when i took up blogging again, i would spread some positivity. i’ve got some posts coming up with a new vibe. this isn’t of them. now i don’t want to be mr. negative, but the truth needs to be told. i had a phone call this week that confirmed my worst fears. i had a phone call from my respiratory physio at the bristol royal infirmary. this was in place of my usual face to face appointment, except i don’t really think it was for that at all. it went a little like this “mitchell”, well it was all downhill after that. don’t even! “has anyone ever spoke to you about filling in a respect form?” oh i knew where this was going. i never felt so disrespected. they should really think about the irony of the name of said form. she made it sound all flowery, like being essentially put down is something to be overjoyed about.

i refused to talk about this disrespect form. she told me it wasn’t legally binding anyway, so even if i did fill in some wishes they don’t have to listen to them. i asked her what the actual point was, if there was no legality in it. she couldn’t give me a decent answer. even though she was making out she was some kind of genie granting my strongest desires. this was at 10 in the morning, before i even had my weetabix. i would even go as far saying she was a bit pushy. as if i hadn’t made my feelings known enough, then she asked me if i want to sign a dnr. no i bloody well don’t, if i wanted one i would already have one. she said “so i’ll put on your next letter you want to be resuscitated”, my answer of no had her in a daze. if i haven’t signed a dnr, i get treated like anyone else so it’s irrelevant.

i want to live. i like pissing people off too much to go for the do not resuscitate option. so unlucky for all of ya’ll who have had enough of me. i’ve fought death before and won, i’m not afraid, but if i can have a chance, sound. i know i don’t have to have a conversation i don’t want to have. are people who aren’t on the vulnerable list asked this sort of thing? no, so why am i? it’s pointblank discrimination. it’s happening, in 2020. yes it’s covid season, no excuse to discriminate! i don’t cooperate at the best of times, so don’t expect me to willingly go a long with your agenda to make it easier for this stupid country. “it’s so we have all the information we can get” yea ok love. i won’t take it, neither should you.

choose life.

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deathrow

the guy who said he would always vote and encouraged others to do so; that used to be me. mark my words and i’m a man of my word, i’ll never vote again. nothing will ever really change. i’ve lost a lot of respect for this country over the last 10 years: the decade they cut everything. not i only did i see this all unfold; i felt it. even after last year, when i sat by the edge of a railway track contemplating the obvious, after a string of people showed their true colours, i still believed enough. the reason i mention it, is because all i got was an offer of a happy pill and “talking therapies” with an unfathomable 9-month wait. i still voted when it was time to, because an ounce of belief still existed in me.

then 2020, my year! became the year of coronavirus. apparently the uk gov don’t think everyone deserves a fighting chance with things like the corona bill and other guidelines and the like that are being kicked about. the government seem to be counting on at least 20,000 deaths, not just expecting it. 

  • they can pretty much force me to have a dnr (do not resuscitate) in place, so i can just kick the bucket at home and die quietly.
  • even if i did manage to get admitted, pathway will be the only way. i’d basically be put on death row and i didn’t even kill anyone.

yes i’m ughh “vulnerable”, but should that make me less? i’ve got 2 beautiful children, my own place and a decent job. i’ve done more in 27 years than some do in 43. for a country that bangs on about equality all the time, where is the equality now it’s hitting the fan? truth is fact, they’re talking about these types of decisions because they messed up and couldn’t get enough stuff. why should we suffer? all they say is “we’ll be getting this next week and we hope to” blah blah. every second wasted is another nurse or doctor without a mask, another person not tested, another person dead. i’m so done.

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onyourown

i always knew a big, bad pandemic was going to happen, it was inevitable. i’ve watched plenty of blockbuster end of days films and real life hasn’t played out much differently. it’s like waking up in a movie scene, yet it’s less zombieland and more groundhog day. i assumed or rather hoped that in a situation like this, that everything would be thought of and the government would have a plan with the right resources. i’m totally gullible this time, as it’s quite clear there’s been no plan from the very start of this pandemic.

i employ my own staff with no formal training to be a bawse. yes it gives me flexibility with my support and i feel i am or try to be a decent boss, however it makes it easy for the government and even local council if i do it. i say “show me the monayy” and eventually they do, after that everything just seems to be my problem. they don’t want to take responsibility, even though it was govs idea to cut any extra support in the first place. the public have a short attention span. the people who are backing boris now, are the same ones who vilified him. i won’t ever forget that big red bus of lies. it was fantastic to finally hear carers mentioned during the lockdown, heartwarming in fact. let’s see if they’re still talking about carers when this is all over, we can only hope.

i use a company who are so bent, they had to change their name because of it. i use them for their payroll and “support” services. now i do have my own personal advisor who’s a great guy and always does his best and the same goes for my social worker. however when it came to sick pay for staff regarding coronavirus, personal protective equipment (ppe) for them (specifically masks) or what i should do in certain situations i.e. if i got coronavirus, they couldn’t answer any of it. their responses are still relatively vague. i usually speak to some airhead with a scouse accent and the phone calls usually end with “i’m sorry mr coles that we couldn’t be more helpful”, thanks then tony!

someone i know has an nhs funded care package (chc) and has done some digging recently. he seemed to come across vague reply, after vague reply and none of the plebs he spoke to were too sympathetic to his situation. the overarching theme was “do it yourself”, a treatment that i know far too well. we’re meant to just figure things out. create your own guidelines, we don’t have any for pa workers or their bosses (me). you or your carers feel the need to have ppe? buy it yourself, because we won’t supply it. i mean they can’t even guarantee it to our doctors and nurses, so why am i surprised? in the end i bought some masks myself.

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