42 - Dr Alison Twycross - LCNMUK

Episode 42 of the Long Covid Podcast is a chat with Dr Alison Twycross, founder of Long Covid Nurses & Midwives UK. We chat through her experiences with Covid & then Long Covid as well as her work in employment and specifically with nurses & midwives.

There are a lot of employers who are treating their staff well, but sadly there seem to be more that aren't and we chat about some of the problems & possible solutions to helping people with Long Covid (& other chronic conditions) to recover whilst remaining in work.

LCNMUK website

Social links – Twitter/FaceBook/Instagram

Alison's blogs:
BMJ - "Support for healthcare professionals with Long Covid returning to work a national disgrace"

BMJ - The rise & fall of our NHS heroes

BMJ - Disability is not what you think it is

BMJ - Is a lack of knowledge about Long Covid a reason to dodge people's needs?

"Living with Long Covid - some reflections 14 months down the line"

Financial Times article  

Evidence based podcast with Elaine Maxwell (NIHR) 

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For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  00:00
Hello, and welcome to this episode of the long COVID Podcast. I'm really excited today to introduce my guest, Dr. Alison Twycross, who has been using her experiences of long COVID to help campaign for better working conditions for others suffering, amongst other things. So welcome to the podcast.

Alison Twycross  00:19
Thank you. And I'm very excited to be part of this podcast today. So thank you for inviting me.

Jackie Baxter  00:24
So it's wonderful to have you here. Would you mind starting off just by briefly introducing yourself and what it is that you do, or what you did before COVID.

Alison Twycross  00:34
Okay, so I'm Alison Twycross. I'm a registered nurse. And I've been living with long COVID Since March 2020. And I've got loads of ongoing symptoms - the ones that bother me most are the cognitive dysfunction, and the fatigue, because they stopped me doing some of the things I would normally have done.  So I've been a nurse for probably the best part of 40 years. My employment history over the last few years is a saga in itself. So at the end of January 2019, I got sent home by Occupational Health, from my job in London. And I never went back, I was a Deputy Dean, and Professor of children's nursing. And after being off sick for eight months, I took severance, and decided to go self employed for a bit and be a consultant in nursing education and research. The first bit of freelance work I got was with the Open University. And they were also advertising a senior lecturer in children and young people's nursing. And I thought, I quite fancy that, I quite fancy going back to children's nursing. So I started there on the first of February 2020, and carried on doing the work I'd been doing as a consultant really, to get them ready for validation for their new pre registration nursing course. We had validation on something like the ninth and 10th of March, I decided after that, that I'd work from home, because I was in a clinically vulnerable group.  And then, two days later, I developed COVID symptoms. And I did manage to work from home for about a week to 10 days, and then I crashed spectacularly. And I've been off sick ever since. And the role there is about reading, writing, and editing, which are all the things I find really hard now. And so on the first of February, I handed in my notice, and I'm currently working my six month notice period. So I'll be back to being self employed at the end of July. And because I've been on no pay for about a year, I took my teacher's pension early on my 56th birthday last summer. So that gave me the freedom to hand my notice in and not worry about the future. It's actually less scary than when I left my job in London, because at least we have financial security.  And I also edit Evidence Based Nursing. I'm Editor in Chief. And I've done that since August 2010, which is about making the research evidence available for nurses and midwives a little bit more accessible. And I've managed to use my role as editor in chief to promote research about long COVID and Long COVID nurses and midwives and, and things like that. I have told them to stop if I'm exploiting my role too much.  And I guess over the last 25 years, I've also been involved in various roles at the Royal College of Nursing, not so much in the last 10 years. But all the things I've done, including editing one of the primary textbooks on children's pain management worldwide, mean that I've got an extensive network of contacts across the UK, across all four nations, and internationally. And one of the things that is really helpful to me in trying to promote lLong COVID Nurses and Midwives UK is that network, because I can get our voice heard where maybe others couldn't.

Jackie Baxter  04:32
Yeah, that's fascinating. So it sounds like you've had a hugely varied sort of career in all sorts of different ways. So that's really awesome.

Alison Twycross  04:41
Yeah, I've had a very exciting career and had lots of different opportunities. 

Jackie Baxter  04:45
But I think, I mean, you mentioned about the financial security. I think that's quite a big thing, isn't it? Because, you know, financial worry on top of all the other worry and we all know that stress makes symptoms worse. So I'm really glad that that's at least something you don't have to worry about.

Alison Twycross  05:01
Yeah, and I do feel really blessed that I don't have a mortgage because I paid it off when I moved out of London, and albeit a smaller pension than I expected, I have a good pension. So that is a real blessing, because we couldn't have lived on my partner's state pension. I don't know how anyone does, even with extensive cutbacks.

Jackie Baxter  05:20
Yeah, it is. It's insane, isn't it? So you mentioned that you got ill early March with COVID. So I think that was around, certainly around about the same time that I did, and I think a lot of other people as well. But you know, we thought we were okay, at that point, didn't we? Because the number of cases in the UK was, well, the reported reported cases were so low. So I guess it was maybe a bit of a surprise?

Alison Twycross  05:46
Yeah, I think I'm glad I didn't know I'd still be ill 25 or 26 months down the line. I remember thinking, Oh, well, I'm in the clinically extremely vulnerable group, this is going to get it out of the way. I did spend three weeks in bed after I crashed. And I just never really got better. And I remember googling in April 2020, "fatigue post COVID". And there was nothing. There's always something on Google. But there was nothing. And like my father's a retired physician. And he kept saying to me, oh, yeah, you'll get a 2 week sick line, you'll be fine. And then it just kind of carried on. And eventually I started getting two months sick notes. Because it just not getting better. So I'm sure, you like me, feel a little bit better than you did two years ago. But I need reminding about how much more I can do. But I'm nowhere near the woman who could commute into London, or could work for 10 or 12 hours a day. And I think that's really hard for people to understand if they haven't had long COVID themselves, because we look okay.

Jackie Baxter  06:56
Yes, that is the problem with - people call them invisible diseases, don't they? And it's that kind of Yeah, you can look okay, but that's because nobody sees you on your bad days as well, you know, fatigue is not particularly visible anyway. And then yeah, when you're feeling too fatigued to do anything, then you're crashed out on your sofa, aren't you, so nobody sees you. You're absolutely right, though, people who haven't experienced it find it very difficult to understand.  You know, you said about having Googled COVID fatigue. And, and it sounds like maybe you had a similar experience to me, where you thought it was just you that wasn't getting better? You know, I got COVID at the beginning of the pandemic and thought, well, I should be fine. I was told I would be fine. And then I wasn't and nobody else seemed to be not okay. Everyone else was fine. And then, you know, it wasn't until maybe a month or so later when you started hearing more stories about people not recovering, I think and support groups started popping up. 

Alison Twycross  07:54
Well, I think long COVID support. Claire Hastie set it up on the second of May. And I think there was a group on Slack from America that Fiona's somebody or other. 

Jackie Baxter  08:07
Yeah, it was Fiona Lowenstein, wasn't it?

Alison Twycross  08:09
Yeah. I mean, I was aware of of post viral issues. I got COVID on the day, the government stopped testing. And I think it was across the UK at that point, not just England. So I hadn't had a positive test. So yeah, it took me a long while to get long COVID or whatever, post acute whatever they call it on my sick note.

Jackie Baxter  08:31
Yeah, totally. I mean, you were maybe more aware of post viral issues in general than most people were, I guess, because of your sort of medical background, I guess. But yeah, for me, it wasn't something I was really that aware of. And I guess if I had been, I maybe would have been more sensible about not trying to do too much at the start. But

Alison Twycross  08:51
you know, we didn't know two years ago, that stop pace, rest or stop rest pace, whichever one it is, was important. So yeah, people are going oh, you need to increase your steps. And I'd be walking around the garden. Little midget steps. Cos I couldn't do any others. To try and increase my step count. And my partner fractured his pelvis. The first time he went out on his bike at the end of May. And like, he was in hospital for a couple of days and non weight bearing. So like, I had to do everything. And so really, we're into survival mode at that point. My nieces and nephews thought it was hilarious because they claim I've never cooked them a meal. I had to send them pictures of what I had cooked, which was microwave meals. Thank you, Mr. Tescos delivery. But yeah, we just have to do it. I do wonder if we'd known then, maybe if I hadn't worked in this first 10 days, but I was on immunosuppressants when I first got COVID. So I think I was almost inevitably going to end up with long COVID with what we know now.

Jackie Baxter  09:58
Yeah, well, we'll just never know will we? You know, and I do this all the time, you know, what if, you know, oh, I shouldn't have done that, I should have done that. You know, why didn't I know this at the time? Well, because we didn't know. And there's no point looking back and beating yourself up about it, is there really, because what can you do about it?

Alison Twycross  10:13
We were in the middle of the first UK national lockdown. So like, even though my parents only live 20 minutes away, they couldn't really come and help. Nor could my brothers really, because they also live fairly nearby. So you just have to cope.

Jackie Baxter  10:26
Yes, yeah, absolutely. Yeah. It's hard to kind of remember, isn't it? How, you know, lockdown restrictions, you know, you literally couldn't go anywhere. And you and I couldn't anyway, because we were too ill to. But yeah, it was definitely strange times. So you said that things are improved a little now? Has that just gradually sort of happened over time?

Alison Twycross  10:50
Yeah, I think so. And I think just because I've only just started my job, I felt really embarrassed about being off work. That kind of went after about 18 months, because you just kind of accept it. But I tried to get back to work. So I think it was the beginning of June. So it was after David had fractured his pelvis, when I was in survival mode. I said to my boss, I'm gonna do two hours on Monday, two on Tuesday, and two on Thursday. And actually, that really, I did two hours on Monday, and felt really ill, and I had a paper I needed to edit that was working on with a colleague in Birmingham, she was a friend as well. So I didn't want to let it down. And the nausea, and that the headaches just came back over in a vengeance. So I persevered and that the nausea and headaches were always worse in the middle of the night, I slept with a bucket under the bed for a year, I never needed it. But if David took it away, I panicked.  I mean, I think I suspect I had hypoxia and didn't know it. Because we didn't know then that there was a silent hypoxia. So that exacerbated my symptoms. I remember a month later, when Amelia had done the final amendments and we had to upload the paper, just uploading a paper onto the website. That also caused an exacerbation of my symptoms. And that's something I do all the time. I'm an academic. And the first blog I wrote about long COVID with Jake, a medic, took weeks and weeks to write. The one I wrote in October about what it was like for health care professionals returning to work took probably six or seven weeks, and I nearly gave up. But thanks to some support from my long COVID buddies, we made it.  And I think I can do a bit more now. So in October, the end of October, I realized I was spending a lot of the day trying not to cry. So I went on antidepressants. And I started sleeping better at night, which meant that I didn't worry about having a sleep in the day. So now I do a bit in the morning, I have a two or three hour - David says I have to call it a sleep. So I have a sleep from anything from an hour and a half to three hours after lunch. And then I can do some more work late afternoon. So people who ask for a meeting get well mid morning or after 4pm. And but if I manage to have my sleep in the middle of the day, it really helps.  So on Saturday, it was the last football match of the season in the English League One. And all the matches were at 12.30. So normally - I'm a season ticket holder at Oxford, normally if Oxford are playing at three, I have lunch really early and have an hour and a bit sleep before we go. But I couldn't do that because it was at 12.30. And by the time we got home, I was holding on to the car. And I had to hold my niece's arm, walking down the stairs at the stadium. And it's like I got went to fell into bed at four o'clock and didn't move for an hour and a half. And I thought, that just illustrates how much I need that nap. And so it seems to work for me. But it took me 18 months to work that out. And I think various things I've recovered, but you know, I still can't find the words I need some times. And things do take longer. I used to be able to write a blog for the journal on the return journey into London and back. Now I can't do that anymore.

Jackie Baxter  14:33
Yeah, it's interesting, isn't it? I mean, I was speaking to somebody a few days ago and they described it as like learning your new body. And it kind of is like that, isn't it, because you have to kind of work out new ways of how you can do things, and what you can and can't do and, and sort of giving some things up in order to be able to do the others. 

Alison Twycross  14:52
The only thing I still do from my old life is go to the football, oh and I guess edit the journal but Yeah, once or twice, I thought COVID is really prevalent. Maybe I should stop going to the football. But it was literally the last thing left. And I couldn't bring myself to do it and it's outside. So, yeah, it's very different.

Jackie Baxter  15:15
And was it worth the crash afterwards? 

Alison Twycross  15:17
Yeah. Well, it was, it was an interesting game because it was the last game of the season, and that neither team really had anything to play for. So it was an unusual game, but it was definitely worth going. Because for someone who supported Oxford united for as long as I have, it's been a pretty good season.

Jackie Baxter  15:35
Oh, that's awesome. I've definitely noticed a few times you sort of think, I don't think I should be doing this. But at the same time, I'm going to do it because I need some joy in my life, and I'll probably suffer for it. But as a one off, it's worth it.

Alison Twycross  15:50
Yeah, I felt pretty bad on Sunday. But like, my cousin said to me, but it was worth it, wasn't it? And I said, yeah, 

Jackie Baxter  15:56
totally. So you've mentioned a little bit about some of the work you've been doing with, let me get this right, Long COVID Nurses and Midwives UK, which has a catchy acronym, as well. So when did this get set up? And and I guess what was the inspiration behind it?

Alison Twycross  16:15
So it's a bit of a mouthful, but we felt it was important to include both nurses and midwives. And also to have the UK there, because we have reps from England, Scotland, Wales, and Northern Ireland. So that's why it's UK. And in preparing for the podcast, I kind of thought about how it came about. And I think the impetus for it started in the autumn. I've been a member of several Facebook groups for most of my long COVID journey. And one of the things that nurses and midwives, and in England nursing associates, have always expressed anxiety about throughout is their revalidation for the Nursing and Midwifery Council, which we have to do every three years. And if we don't do it, we can't stay on the register. And so we can't work. And you have to do a certain number of practice hours. And you have to do certain amount of CPD and do some reflections, get some feedback and reflect on that.  And I remember the year before, being in a panic about it. And a friend of mine in the village who is a nurse said, Come on, don't be ridiculous. It's not going to take that long, I'll help you. So I got it done. But that really made me think because I'm someone who's used to writing and I struggled with it. And it had been an ongoing theme among all the NMC registrants on the Facebook groups. And I suddenly thought, Hmm I know quite a lot of the senior people at the Nursing and Midwifery Council. Why don't I contact them? So I reached out to them and asked people on the Facebook groups to let me know what their main concerns were.  And we had a conversation myself and to the people who work at the NMC Sam Donahue and Ann Trotter. And he answered some of my questions and the questions other people had. And so I prepared some notes. It took a long time, but I prepared some notes afterwards. But I didn't have a website to put it on. So I had to keep posting on the Facebook groups. But thankfully you can post PDFs on Facebook. You can't on Twitter, can you? And also after I published my blog on what it was like for people returning to work, ie, a bit of a disgrace. I spoke to Sue Tranker, who's the chief nursing officer and Wales having messaged her on Twitter, and got some useful information from her and made that contact.  And then I persuaded the editorial team at evidence based nursing that it'd be a good idea to do some podcasts about nurses' experience of long COVID. And so in December 2021, I started reaching out to people, nurses and midwives who are on social media, mainly on Twitter. And said look, I'll be in touch in January, but would you like to be part of a podcast? And I was hearing more and more and more and more horror stories about how people were being treated. And I have to say now, because I get accused of being negative, that I know there are some NHS organizations across the four nations that are doing a really good job at supporting their staff. And I know that I hear the horror stories, but the ones I hear are utterly appalling.  So I guess I decided we needed to do a little bit more than just record podcasts. And I decided to set up a Twitter list, which probably wasn't much help looking back. But the response to setting up a nurses and midwives with long COVID Twitter list was overwhelming. And so I thought, okay, there's a real need here. So on the 28th of January, this year, we had our first meeting, long COVID nurses and midwives UK, its first meeting via zoom. And I guess the rest is history. But we're a group of people with long COVID. Interestingly, most of us caught COVID in March or April 2020, but not not all of us. And we're keen to make sure that nurses and midwives in the NHS in particular, get treated properly and fairly, rather than the way some of them are being treated.

Jackie Baxter  20:38
Yes, absolutely. I mean, I think we have to remember as well that a lot of these people were people that were literally putting their lives on the line, we were standing outside their houses clapping for them, weren't we?

Alison Twycross  20:48
Yeah, I mean, it's ironic - nurses and midwives and other health care professionals and frontline workers. Teachers, I think about a bit of raw deal as well, were the heroes of the country and many moved out of their homes. I don't like using acronyms. That might not be the right word, but like using words that suggest it was a fight, but it was - they were fighting on the frontline in dreadful situations without adequate PPE. Many died, but more got long COVID. And so the people who died, some of them got compensation their families, not very much, but I'm not saying that that that makes it okay that people died. But the people that are left behind with long COVID that has changed their life completely and left struggling and having to fight for their employment rights.  HR and managers don't really understand the relapsing, remitting nature of long COVID. Neither do their colleagues. And why is long COVID different from other long term illnesses? Well, people got it at work, without adequate PPE. And I believe there is evidence beyond reasonable doubt that many employers didn't adhere to what they should have done under the Health and Safety at Work legislation. And a lot of employers appear to be denying that they had anything to do with it, because they say they were following government guidelines at the time. But there's guidelines, then there's health and safety legislation. And we need some case law. But I think it's gonna, it's huge.  And if you've got long COVID, and you've got cognitive dysfunction, and fatigue, and many other symptoms, it's really hard to fight for yourself. So the fact that HR and managers don't understand, and sometimes the reps don't either, because it's so new, union reps, we're trying to kind of identify best practice and share information as a group. Unfortunately, we don't have the capacity to offer individual support. Because A, we're not well enough and B, it would just be too overwhelming. We wish we could. And we feel really bad when we can't. But we feel that doing the lobbying at a national level. And making sure that nurses and midwives voices are heard at all levels is more important. And what we're about.

Jackie Baxter  23:30
Yeah, for sure. I mean, you know, you mentioned earlier that, you know, post viral fatigue or post viral illness. You know, it's it's obviously much wider spread with Long COVID and all happening at the same time, but it's not new either, you know, things like ME have been around for so long, haven't they? And how is the system still not understanding the nature of these sort of illnesses?

Alison Twycross  23:53
I spoke to my MP last week and said Mmm Long Covid appears to be missing from the government's dialogue and decision making. Now he said he had heard about it talked, talked about on at least a couple of occasions. But they just seem to forget about it. And it's almost like living with long COVID means forgetting about long COVID and it will go away.  It's very interesting. And I think it says something about the medical profession - if they don't understand something, and they can't cure it, finding it really hard. And I'm not sure that nurses either and other health care professionals, as a whole can cope with something where they there isn't an answer. But you know, people used to think multiple sclerosis, MS was in the head until MRI scans were invented. So we really should learn from history. And the other thing is the government should have known there was going to be long COVID Because it was a SARS virus. And there is plenty of evidence that the SARS - I don't know if it was a pandemic but the last SARS virus - is still causing problems for people. There's some papers out of Toronto, and people still have long term issues. So they should have known.  But the number of people affected, I think it was 1.7 million in the April data from the Office of National Statistics. And some of those children, which is interesting to me as a former professor of children's nursing, but like we've got huge gaps in the workforce. And nursing in particular, started out of a huge deficit. And we reckon there are around 10,000 registered nurses in NHS England with long COVID. And that's just in NHS England, but there's no, there's no real data by profession. So we really need to count long COVID better, so that we can then target interventions properly.

Jackie Baxter  25:57
Yeah, I mean, you mentioned that that's obviously a huge number. And, you know, that's only gonna get more, isn't it? You know, with more infections, more widespread among Well, everybody at the moment, you know, and that the number is - the bucket is filling up.

Alison Twycross  26:10
It is and that's just registered nurses, so it doesn't take into account other members of the nursing and midwifery workforce, physios, OTs, medics. Interestingly, nurses do appear to get long COVID significantly more than medics. And we think that that is because of the prolonged contact they have with patients. And so they're getting a greater viral load. Teachers are fast catching us up. And I'm suspecting that teachers are getting a pretty good viral load in school because of the lack of protections as well. 

Jackie Baxter  26:47
Yes, yeah. And the sheer volume of people I guess, as well in the school, isn't it? Prolonged exposure of 1000s? So what are you involved with sort of at the moment as a group?

Alison Twycross  26:59
Well, I'm constantly amazed by how a group of nurses and midwives with long COVID, how much we have achieved since the 28th of January. And I mentioned before that one of the things we wanted to do was give nurses and midwives with long COVID a voice. And I think we've done that. And we've done it at all levels within the UK. And across the four countries.  We started off by developing a presence on social media. And I was amazed at how quickly our Twitter account grew followers. And Kerry Davis is the lead for social media, but she's aided and abetted by many of the other members. And so we had a Twitter account. And then they persuaded me that having an Instagram account was a good idea. Although I detest Instagram, it does my head in. And I think last week or the week before we set up a Facebook page. And all of us are involved in promoting our activities. On all those social media platforms. Yesterday evening, we launched a Twibbon on that you can add to your social media profiles.  And about a month ago it was we launched a website where we're bringing together information to help people in one place. Now there's more information written than is on the website, because we're people with long COVID. And so it takes us a while to get the information on there. And also, I've got half drafts of things and scribbled on bits of paper, because for the first time in 25 years, I've needed to write on paper rather than straight on to the computer. So we're developing a website. So we can put people in in the direction of information that's on there. And in other places. We haven't set up our own Facebook group because we felt the were enough out there already. And we didn't have the capacity to manage one.  We feel we've been successful in lobbying in a couple of key areas in conjunction with other long COVID groups and other people. So in the middle of February, NHS England, suddenly, their guidance for supporting people with long COVID disappeared from the website and was relaunched. And we were a bit perplexed when we started looking for the guidance at the beginning of February. And what had happened was that because of an outcry on social media and with campaign groups, they removed the sentence or two that said that people were long COVID could be dismissed if they'd been off sick for a certain length of time. I developed quite a lot of slides that we could use on Twitter. And I was kind of churning those out. And people were being outraged about how nurses and midwives were being treated. So I think that was partly because of us. I also think we might have been instrumental in the last minute reprieve for NHS staff in Wales in relation to going onto half pay. Now, it wasn't due to us alone. There were people in the Welsh Assembly, the Senate, that were lobbying hard, particularly some members of Plaid Cymru. But on the first of April, all NHS staff who've been off sick with long COVID For a year, were meant to be going on to half pay. And there was a U turn, or a reprieve given on the afternoon of the first of April, where they're staying on full pay until the end of June. So it's only a reprieve. But we think that's great. And we suspect the outcry about people going on to half pay in Wales that we had all over Twitter as well, may be one of the reasons why they haven't done it in England. Yet, although the other half of me thinks it's because they wanted to wait till after today's elections, but only time will tell.  So I've said that we point people in the direction of information like about disability, about appropriate return to work, information, best practice guidelines, keeping people up to date about variations and guidelines across the four nations. One of the things we did was, we conducted a survey with evidence based nursing for registered nurses and midwives in England, because we were hearing all these horror stories on Facebook groups, and people were emailing me and messaging me to tell me about it, of staff being threatened with dismissal, being dismissed, going on half pay, going on no pay. So it seemed to be mostly an issue in England, because the guidance is guidance. And the 240 entities that make up NHS England don't have to follow them. I wish NHS England would take a harder line. But they say that it's up to individual trusts and organizations.  So we wanted to find out a bit of data. So we found that many registered nurses and midwives were now on half pay or no pay. There were some who had been dismissed and there were some who'd chosen to leave. Members of the group have written quite a lot of blogs, some for evidence based nursing some elsewhere. We've talked to journalists, both in the nursing press and elsewhere, I was quite excited to be featured in the Financial Times, just before Easter. I even had my photo with it. I was quite amused at how excited I was about it, given that I've been quoted in the nursing press for years. But anyway.  Ahead of the debate in the UK Parliament last month, about COVID-19 unemployment, we did write a briefing paper that we can send to people about what's happening with nurses and midwives with long COVID. We didn't know the debate was happening til, because you don't, until relatively late. And I amazed myself by managing to write a briefing paper in a day. It did mean I crashed for the most of the rest of the week. So I did two hours on it in the morning, having written notes over the weekend about what I wanted to go in there, sent it to the gang, then went to bed and got up and did some more editing, and then gave it to David, my partner at about five o'clock and said, Please proofread this but please don't say it's really bad. And like I look at it now. And it could be better. But that was like a major achievement in my long COVID journey. And means that we can send it out to other people. But the Royal College of Nursing have also recently launched a webpage just before Easter, putting together all the information for their members with long COVID. And that was because we pointed out that it was really hard to find information. So I spoke to the English director of the Royal College of Nursing. And she listened and then acted to pull it all together and asked for feedback when it was launched. And we've said I think you should have some information as long COVID And whether it's a disability or not. So they're doing that.  Several of us have presented at meetings. So I gave a presentation to the Welsh governments cross party group in April. I proved I could still do presentations, which was quite exciting. Kerry Davis, who is a community nurse who works at the University Hospitals of Morecambe Bay Foundation Trust has been supported to tell her long COVID story by her employer and her employer are doing a really good job. They have an occupational health physician and nurse on staff. So she's presented to the chief nursing officers health and wellbeing reference group. She joined professor Ann Harris who's a prof of occupational health nursing to talk to some Bangor University students about long COVID, she's presented to NHS X and NHS England NHS improvement, attended a Queen's nursing Institute nurse expert group meeting and talked about her journey. She presented at an NHS England Ward and Team Leader conference. And it's been recorded for part of the Health Education England eLearning module on long COVID, which is now live. And I guess that's all very England centric. I wish people would share things. But anyway, the University Hospitals of Morecambe Bay Foundation Trust, has also set up a national long COVID network which all nurses with Long COVID across the four nations can join.  And our Scottish rep. Cass MacDonald, is part of research work with the University of Glasgow long COVID PPI groups, so the patient involvement group. And they've held too long COVID Scotland online cafes, and they've worked with advocacy and employment groups have long COVID Scotland as part of work with us, long Covid nurses and midwives, and other groups, and is also a member of the Scottish Government cross party group and on COVID. They've also recently wrote to her employer and Alex McMahon, the chief nursing officer in Scotland, and said, Look Greater Glasgow and Clyde are doing these great things. How about rolling it out across the whole of Scotland, and I've managed to meet with the English, Welsh, and Scottish chief nursing officers, the Northern Ireland chief nursing officer wasn't in post at the time we started the group, and I'm not sure when she is starting.  And we're currently developing links with other Long COVID groups and key influences. So long COVID physio have contacted us, long COVID SOS want to do some collaboration on social media. I'm part of the long COVID Support employment group. And I've been asked to join long COVID support. So the tentacles - we are spreading our tentacles. And like just reading out that listen to you. I think it's incredible what we've done. We're a group of people with long COVID. And we still managed to do this. And for many of us, it's made us feel that we have a purpose, and that we're making a difference. But as I said before, things always take longer.  Next week, we're launching our friends of long COVID nurses and midwives UK. But that got delayed because I had a family bereavement and needed some space. So we're launching it on international nurses day. So it's interesting, I love working with the group, they inspire me. But as someone who pushed themselves for the best part of 50 years, to achieve, and to get through her to do lists, having to knock things off the to do list every now and then, and have to be patient is hard. Patience isn't one of my virtues. So I think God has a sense of humor, really, in giving me long COVID. Maybe it's his way of after 56 years, trying to teach me to be patient. The other thing we do is we support each other. So we have two WhatsApp groups now. One is for support and social stuff. And the other is for kind of businessy stuff. And there's usually someone awake in the middle of the night if someone's having a crisis. So that's kind of cool as well.

Jackie Baxter  38:11
That sounds amazing. And that's so much that you've done in the space of like three months,

Alison Twycross  38:16
It was kind of cool writing it down. Because I don't think we'd realized, and we've probably missed some stuff. We think it's making a difference. And we hope we can continue to make a difference. And not just actually to nurses and midwives but to other NHS staff and other key workers. Because I think if we get it right, for nurses and midwives, it will impact on other people as well. And there is some NICE guidelines that say that the NHS should be an exemplar employer. So NICE, I think doesn't cover Scotland. But it definitely covers Wales. I'm not sure if it covers Northern Ireland. And I think they are falling short. In many cases.  What I'm seeing is that there are two types of employers out there in relation to long COVID. There's one group that are kind of focusing in what I see is very short term goals. And they're worrying about that balancing the books, meeting government targets, many of which I consider ridiculous, and they see people as a bother. Now I know as a former senior manager, albeit in the university rather than in the NHS, that managing people properly is hard work and takes an emotional toll on you, as well as the people that you are managing and supporting. But the other group of organizations see people as their biggest asset and are working to maintain the talent in the organization, and as such prepared to invest in their staff. From what I've seen, most employers seem to be in the former group, but as I said earlier, I hear the bad stories. And we are trying to pull together some best practice examples to put on our website.  What seems to be happening now, is since NHS England took the statement about dismissing staff who've been off for a long period of time with long COVID, I think it was 12 months, but I'm not sure, which is why I'm being vague, employers are now focusing on ill health retirement, because I think the guidelines for all four countries, it says that ill health retirement is an option to be considered. However, because many employers are focusing on balancing the books and seem to want to get rid of their staff with long COVID, ill health retirement is being used inappropriately, I think.  So I did once support a member of staff with a long term illness to get ill health retirement. And the option at that point was if you didn't get health retirement, we'd be using the sickness capability procedure. However, she had had two really long periods of sickness in the past, and had reasonable adjustments put in place to try and help her cope. And it hadn't worked. So it was appropriate. And we worked really hard and got all the evidence we needed. And she got her full pension, like bumped up. But it was hard for both of us. But we did it.  But what I'm seeing is NHS HR advisors and managers, thinking that this is a way to get rid of people. I'm told that in some trusts, if you apply for ill health retirement, they see that as you admitting that you're not fit, and they start the sickness capability procedure. We don't know very much about the long term impact of long COVID. So you're not automatically going to get ill health retirement. And in fact, I don't know anyone who has got ill health retirement on the grounds of long COVID. A few people have if they've got other illnesses. But you know, some people have got other illnesses that have started as part of Long COVID. But they haven't had access to tests. So they don't know. But the thing that is bugging me a bit. And I was talking to a friend and colleague who's an occupational health physician last night. And she said no, no, no, no - ill health retirement. And I read her out one of the quotes that I've got, someone has sent me she went. Hmmmm. And actually, ill health retirement is an option, once you've tried to get someone back to work, and put reasonable adjustments in place and supported them. And what isn't happening, in what seems to me the vast majority of cases, is those reasonable adjustments aren't being put in place, and people aren't being given the chance to go back to work. Now, this is completely anecdotal. But it seems to me it's harder for nurses and midwives, in clinical roles, than it may be is for people in office based roles, or physios and OTs seem to get a little bit of a better deal in that they're allowed to work from home or not see patients for a while. Now I've got no data to support that. So I could be shot down. But I think there's an inbuilt culture in Nursing Midwifery that is inflexible in relation to supporting people to remain in work. And it's not just long COVID, It's across the piste.  I dropped my hours when I was a newly qualified staff nurse to four days a week in a big London teaching hospital in the late 80s. And got teased remorselessly about it. And I think there's an expectation that if you're in a clinical role, you'll be working at 200%. Whereas when you go back with long COVID, you might be at 50% if that. And you really need an extended extended extended phased return. And I think it's something about a culture in the NHS that they maybe don't even realize is there, and a lack of focus on retaining staff. So it's not just about long COVID. But people with long COVID are bringing it to a head. And that's where we see the two different types of organizations as well.

Jackie Baxter  44:17
Yeah, and I guess Yeah, the sheer number of people with long COVID is obviously exacerbating an already existing problem.

Alison Twycross  44:25
Yeah, so ill health retirement is my next campaign. And I'm about to put a Padlet page up for people to put their experiences on. Because we want we kind of want to understand who's introducing it, and what procedures are using and at what stage, to see how big the problem is. I hope to do some work with the long COVID support employment group to highlight poor practice and support people to do a little bit better.

Jackie Baxter  44:52
Yeah, cuz I think you know, it needs to be across the board. You know, obviously, people in medical roles, people in teaching, people and whatever they're doing need to have that level of support and and flexibility, don't they? 

Alison Twycross  45:04
Yeah, no, I have a teacher with long COVID, who messages me every now and then to keep me up to date. And teachers are struggling to get ill health retirement as well. But again, it might be because of the steps not being put in. It might not just be because we don't know enough about long COVID. One of the things that bugs people with long COVID most, is the inconsistency. Across the four nations, we can't do anything about that because of devolution. And interesting a lot of people in England didn't realize that health was devolved until they saw that people are getting a different deal in the four countries. But what we should be able to do something about, is make sure that people within the same country are getting the same deal. And in England, that isn't happening. And it's immoral. It's unfair. And it's injust.

Jackie Baxter  45:53
Yes, definitely. Well, all those websites and links and things that you've mentioned, I'll make sure all of them go into the show notes, alongside your website, which sounds like it's got a huge amount of information on it.

Alison Twycross  46:06
We're adding stuff to the website as it goes along. So yeah, it's a good resource. Yeah, there's a contact us email, if people want to contact us about issues, but we can't give individual support. And people can also contact us via our Facebook page.

Jackie Baxter  46:22
Perfect. And I'll make sure we link to that goes on as well. Amazing. Thank you so much for coming along and chatting to me today. I think a lot of people will be able to identify with your experiences, and will definitely be helped by all the work that you're doing. So thank you so much for that. And thank you for coming along today. Thank you. My pleasure.


Transcribed by https://otter.ai