Charlotte’s #MadCovidDiaries Diary 2.4.20
Last time I wrote a #MadCovidDiaries entry I touched on feeling slightly abandoned by services since just before lockdown, even though in reality I can phone my CPN at any time during the working week. As the days have passed this feeling has only increased, in no small part because of the experiences of friends and contacts on Twitter.
People in intensive day groups – for instance, dialectical behavioural therapy or eating disorder programmes – have found their daily sessions abruptly terminated. Letters have been received from Community Mental Health Teams stating that routine appointments have been stopped and will not resume until after the lockdown is over, with no offer of telephone or video support in the interim. A friend wondered “aloud” just how many of us will find ourselves unwillingly discharged from secondary care services when this is all over. Because we’re damned if we do, and damned if we don’t; if we don’t survive because we are denied care, well then we are not a problem anymore, but if we somehow do survive on our own without care, then we are also not a problem anymore. Maybe space will need to be made for all the people who are predicted to become mentally unwell due to the social and personal effects of the pandemic. Maybe those of us who needed care before this will become an afterthought.
Chillingly, a local newspaper revealed that in the absence of personal protective equipment, one mental health trust has advised its staff not to perform CPR on any patient, even if instructed to do so by ambulance staff, for fear of contracting COVID-19. Patients don’t want to transmit diseases to staff, but there are ways in which people sometimes try to kill themselves on wards that may create a need for resuscitation. It would be rare that someone was left to die in these circumstances, but it certainly could happen.
Even if under the care of services, we are facing a time when the lives of disabled people are being weighed up against those of abled people. It has also come to light that government guidance on who should receive ventilation and CPR, if they have COVID-19, discriminates against physically healthy people with learning disabilities because it uses a frailty assessment that award frailty “points” for being unable to wash, dress or go outside unaccompanied. This is a little too close to home for many people who are disabled by severe mental health conditions. My Personal Independence Payment assessment lists all the things that I cannot do when I am unwell, and that includes washing, dressing, feeding myself and going out unaccompanied. It is certainly true that at these times I have very low quality of life. If I were on a COVID ward and doctors had to choose whether to give ventilation to a fully abled 46 year old or to me based on quality of life decisions, would I lose out?
It is not a good time to be disabled.
This, coupled with suggestions in the media that lockdown could last three, maybe even six months, is starting to eat away at me. I’m still exercising and still enjoying having my husband and daughter around, but the restrictions are starting to chafe. I miss popping into town, I miss going to garden centres, I miss having a drink in a café. I miss going to the beach or driving across the hills of Pembrokeshire. Part of me feels like I shouldn’t complain, because there are many people so ill or disabled that they can never do any of those things. The big irony is that I could only do any of those things at the moment because I am currently fairly well. Yet not being able to do them is causing me sufficient stress (and sometimes even despair) that I fear it won’t be too long before my mental health deteriorates. I can’t see me surviving months like this without spiralling into depression. I can already see a big difference in my mood and anxiety level from my last diary entry, and from where I’m standing now things can only go downhill.
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