The Second ‘Wave’: Mad COVID’s Symposium / #MadMeetUp – 28.10.2020

TW: Suicide

Mad COVID held a #MadMeetUp / Symposium on the 28.10.2020, to discuss the impact COVID19 has had on the mad community. As well as looking back, we also explored what mental health services and others can do to support us during the impending second ‘wave’ and any further lockdowns.  

It was an incredibly powerful event – thank you to everyone who came along, and especially those who shared their own experiences. If you missed the event, you can catch up here!

Please do share the video far and wide, so those who have the power to make changes, hear from us, ‘the canaries in the coal mine’.

In this blog we describe some of the experiences shared, we hope to follow this blog with a set of recommendations for mental health services going forwards in the era of COVID19.

To start the event our lived experience panel; consisting of Tamar Jeynes, Andrew Grundy, Nell Aitch and Hattie Porter, spoke about their experiences so far.  Andrew talked about clozapine monitoring and prescribing, as well as the closure of his CMHT in March, and the impact this had on his care.  He also expressed concerns, particularly in the early days, about the increased risks COVID19 could pose for people taking clozapine, referencing guidance produced by Rethink.  The impact paranoia can have on the delivery of remote services, and the lack of privacy associated with telephone contact at home was also discussed by Andrew.

Tamar Jeynes, spoke about the power of collective survivor / user led support, particularly through the Mad Studies group which she founded, as well as being in hospital during COVID19 and working as a lived experience practitioner:

“…I’ve been thinking at first, as a mad person you know, I’m quite used to staying in… so I was thinking it hasn’t had that much impact on my mental health, but then… actually this year, 2020… the last time I was in hospital was 2005. So yeah maybe it has had a bit of an impact, I don’t know.

And I was thinking as well…as a Mad Studies facilitator… I suppose [that] should have been decimated by COVID, but fortunately we were COVID-proof, and we’d already been on zoom before COVID…a bit ahead of the game as well, so as the physical meetings kind of stopped, we were already of geared up for COVID – and actually it’s… grown and ballooned so you could say actually that Mad Studies has…increased because of COVID.”

Nell Aitch, reflected on her experience of being sectioned during COVID19 and how the ward environment had changed, in addition to the impact remote services and lack of face to face support had on her:

“I live alone and all my face-to-face support was moved online eventually, and I found that quite difficult…face to face is really important for me and online definitely… doesn’t have the same effect for me, and it doesn’t have the same feel, and it all just took a toll on my mental health and I ended up being sectioned.

There were no beds so I was put on a section two, but I ended up in a 136 [suite], which was just a really difficult experience.  All my clothes taken off me, all my own possessions taken off me, and it was all really unnecessary, and yeah when you’re already feeling really paranoid and mistrustful you don’t really want to be in a cell with a camera in the corner and a toilet with a camera in the corner…”

Hattie Porter, spoke about living with OCD during the pandemic, the lack of access to existing coping strategies which have kept her well, and being discharged from a waiting list for mental health services due to COVID19:

“I’d kind of finally started to get my life back a bit…and then… going into lockdown was essentially for me very similar to my experiences before, being forced to get home and not being able to see people and all of that, and obviously it… increased my intrusive thoughts, and made things for my OCD much more difficult because of the constant messages from news and… people just saying…if you go out you’re gonna hurt this person and things like that, and like thoughts that things were all my fault.

I felt very like alone I think and isolated and because I’d discharged myself from mental health services already, and when I… tried to speak to my GP and get back in contact they… just didn’t have time at all, or it was just… get on with it you know do a blood test, you’re fine sort of thing…” 

As well as our panellists, a number of guests shared their experiences, some of which were upsetting to hear.  Thank you all for sharing your truth.

We heard from Mikkie who, after a deterioration in his mental health and despite attempts to access appropriate support, came into contact with the police and spent time in a police cell, which resulted in a number of GDPR breaches.  Speaking about his experiences of crisis services, Mikkie said:

“…it was around July and August time that I got referred to the local crisis team after suicidal events…  I was referred to them and very very quickly found them to be quite counterproductive and unreliable. They repeatedly issued me incorrect prescriptions where they would give it to me and when i took it to the pharmacist, the pharmacist told me that it wasn’t written within the guidelines for controlled drugs so then I’d have to make my own arrangements to get that back to them for them to reissue it. I wasn’t given my care plan at all”

Next, G spoke about the chronic lack of funding for mental health services and highlighted that things will only get worse given pressures associated with COVID19, and the failures of our government to respond appropriately:  

“I’m kind of looking at the wider picture. I mean services were underfunded before COVID.  There’s a dirty war on the NHS and I honestly don’t like to sound negative, [but] it’s going to get a whole lot worse. 

There aren’t enough beds for inpatients…there’s up to two years waiting lists for a CPN and people are being prosecuted for trying to kill themselves, and I really don’t know what patients can do about it. 

I blame the f*cking Tories.”

After G we heard from Chloe, who had lost all her social care support following the Coronavirus Act (2020), which eased duties placed on Local Authorities to provide care.   She spoke about the dire impact this had on her and her friend, who tragically died by suicide in the absence of any support:

“I’ve used services for a very long time since I was…about 15.  I’m 30 now and I’m also autistic and I have daily care and about a week before lockdown hit we got the message that it [support] was going to be stopped dead.  So I went from having 14 hours a week care and social services to nothing. 

And it was deemed as being too high risk for me to stay in my flat, and because it was deemed as far too dangerous… I had to go and live with my parents.  And I was lucky because I had that option but I haven’t lived with my parents since I was 19, and I’m 32, and there’s good reasons why I wasn’t at home.  But one of my friends who I’d lived with, the same thing happened, and she killed herself over lockdown. There’s been so much, there’s been so much, and I can’t see it improving as we go into the second lockdown.”

Next, Donna highlighted the lack of support available for new mums, particularly those who are receiving perinatal mental health services:

“I just wanted to come in quickly from the perspective of a mum who’s had to be in lockdown with two children under three…I was in a mother and baby unit, I got postpartum psychosis and I was discharged in the first week of March.  And then not long after that we went into lockdown, so under normal circumstances I would have had a lot of support from mum and baby groups, so I would have peer support with other mums, which I obviously didn’t get, and I would have had regular support from the nurses and doctors. 

The only time I actually got to speak to a doctor since I was discharged from the unit was when I was getting discharged from the service altogether and it wouldn’t have been like that before…”

We then heard from Helen who wanted to share her positive experience of being admitted to hospital, which was in contrast to the previous negative inpatient stays that she had experienced.  Helen also spoke about losing her support workers at the start of lockdown:

“…It wasn’t great at the start because I lost all my support.  I’ve got two support workers that come in twice a week really just because I’m so isolated…  That all stopped and then my partner, and she ended up in the shielding category so they decided oh we’re gonna give you your support back, but it wasn’t, it was just sort of like Andrew was saying, you know, to stand at your front door and ask how you’re doing and you can’t really talk.  It’s not like you can tell them well actually, I’m not really doing great because your neighbours could hear…

But I actually had a really really difficult time and suffered from a kind of psychosis that I’ve never ever suffered from…and I was really really lucky with the CPN that I had…managed to get me a bed…”

Next, Jo spoke about Mad Covid’s Hardship fund, which has raised over £25,000 and has distributed over 200 grants to people who have a pre-existing mental health condition, and have experienced financial difficulties as a consequence of COVID19.  She gave us some examples of the things that the fund has funded:

“…we funded a bike for a small child…with ADHD, and the mum applied to us, they were then able to go off and just burn off energy and do really fun things. 

Laptops for people to keep connected – there’s a big overlap between people who are shielding and people who have mental illness and so that’s something that’s compounded things…

and some of the groups that we’ve seen kind of come back – we’ve seen asylum seekers who are treated so so badly… by the system coming to us, and giving them some supermarket vouchers. 

People have been made redundant, lived experienced people who’ve lost work and also students, because students really fall through the cracks you can kind of suspend your studies but often you can’t get benefits unless you quit your degree but then you can’t get student loans either.”

After Jo, Rosalind spoke about being discharged from a waiting list for mental health services and the challenges speaking to services over the phone brings:

“…[it’s] really frustrating about only having telephone appointments… it’s just harder I think to come across how bad things are on the phone.

…on the day that [lockdown] was announced. I got a letter saying I was being taken off the waiting list for my community mental health team, just full stop nothing else. …when I tried to call them up and was like what’s going on here do you have like a crumb of explanation, and they were so aggressive and like really resented the fact that I was asking for information about my care… A huge thing at the start of COVID is it was just sort of like I was being treated like well can you not just hold it together for a few months and stop being a bother.”

Like Donna, Laura emphasised the challenges of parenting during COID19 and also spoke about the needs of people who don’t use mental health services, due to prior harmful experiences, during this pandemic.  She also spoke about her own experiences of having COVID and in particular Long COVID, with the lack of support for this mirroring her experiences of mental health services:

“I got ill with COVID in March.  I was very poorly and I’m still not better so I’m seven months in now, and …just having this indefinite physical illness and not knowing what course it’s gonna take and not knowing how long it’s going to last and the uncertainty around that and the real lack of any support from the NHS.  It feels like my experiences with the physical health system is really…mirroring my experiences with the mental health system in lots of ways, of not being believed and you know, not being able to access any kind of meaningful help.”

Finally, Ella, who has lived experience and is also a medical student spoke about the increase in people accessing services for mental health related difficulties:

“…over the last few months working in the hospitals, there’s been a lot more acute mental health presentations to places like A&E and also to General Practitioners.  But more worryingly, a lot of these people…there’s a higher proportion of students and young people and also people who’ve become recently unemployed because of the pandemic.

I just think I wanted to raise the fact that being stuck at home which is what most people are now, they may be stuck at home in education, in higher education or stuck at home due to work. [Home] may not necessarily be a very happy place and actually can be very traumatic for people…for example we’ve seen in the hospitals, a real tangible increase in domestic violence and traumatic experiences that can happen particularly living in somewhere like London where there’s obviously a huge socio-economic disparity. 

…If someone was going to school every day or going to university or going to work that could have been something that kept them going and that routine and that escape was very important to them and they didn’t realize that until now”

THANK YOU EVERYONE WHO CAME AND TOOK PART – SOLIDARITY

We’ll be writing a bit more about recommendations for mental health services during lockdown in the coming days / weeks.  Watch this space.

You can catch up on the entire event here:

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!

3 thoughts on “The Second ‘Wave’: Mad COVID’s Symposium / #MadMeetUp – 28.10.2020

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