I'm taking a break from social media. I'll be back sometime in early October. Take care everyone and remember that evidence based practice is important.
18 months ago today I developed the first symptoms of Covid-19 and I am still not better. I’m better than I was but nowhere near back to full health and still off sick (now unpaid) from the job I started in Feb 2020. This is living with
#LongCovid
.
#CountLongCovid
So I tested positive for covid this morning. The second time in less than three months. I’m in the CEV group and hoping I get antivirals. I’m so angry that the Government is standing by and ignoring the evidence and not putting mitigations in place.😡🤬😤😖😠
21 months (630 days) today since I got my first covid symptoms. Still nowhere near fit or well enough to go back to work. Grateful to my partner (David) who is now my carer and the
#LongCovid
community and others for their ongoing support.
Just to say I'm going to have a lower profile than normal for the next couple of weeks having tested positive for covid while I was away. Despite a course of antivirals I am still feeling unwell and trying to take it easy for a couple of weeks.
#CovidIsAirborne
#CovidIsNotOver
2 years ago today I developed my first covid-19 symptoms never expecting to still be ill after all this time. My life has changed - maybe forever - there are lots of things I miss. I have made many new friends in the
#LongCovid
community - thank you for your ongoing support.
Just breaking into Twitter to let you all know I'm in the Financial Times today!!
@FT
@LCNMUK
. Long Covid: the invisible public health crisis fuelling labour shortages
Hearing some nurses with
#LongCovid
in England are having their pay stopped & being taken down a sickness capability route. This is CRAZY. Loosing experienced nurses from the workforce & abandoning those who have served on the frontline during the pandemic. Surely this is IMMORAL
Today is 1st Sept. NHS staff with Long Covid in England & Scotland are no longer receiving Covid sick pay. Staff in Wales have been in this position since 1st July. I am so incensed I have written a blog: . NHS staff with
#LongCovid
please read and help.
So yesterday I published a blog by
@EvonneTCurran
examining the evidence that
#CovidIsAirborne
. Imagine by surprise to receive an email from
@LinkedIn
telling me the post had been removed as they allege it contains misinformation. Not sure what to think about this ....
I’ve just set up a Twitter group for UK based nurses and midwives living with
#LongCovid
. I’ve added a few people. Please contact me if you’d like to be added to this list. (NB this is the first time I’ve set up a Twitter group and so apologies in advance if it doesn’t work.)
600 days ago (20 months) I developed my first Covid-19 symptoms. I’m still no where near recovered and still off sick (unpaid). Will I ever recover completely? Adapting to a new reality is hard. Thankful for the support of the
#LongCovid
community and others.
#LongCovidWork
Update: I’m going home today. Oxygen sats holding their own in air. Steroids for three months. Lung function test as an outpatient. Thanks for all the messages and sorry I haven’t replied to them all but they really help.
#CountLongCovid
23 months today (701 days) on 12th March 2020 I developed my first covid-19 symptoms. I had started a new job the month before. I have not been well enough to return since and recently handed my notice in. My life with
#LongCovid
is very different to my “old life”.
#COVID19
Today is my 3 year covid-anniversary. I am better than I was but nowhere near back to my pre-covid said. I am the same person I was but a different shape (both physically and psychologically).
12 hours after I rung 111 the duty doctor has just phoned. Apparently the antiviral service is only open Monday-Fri during office hours. I guess this is due to a belief that covid is over (it isn’t) among the Government and many NHS senior managers. 🤞they call me on Monday.
So I tested positive for covid this morning. The second time in less than three months. I’m in the CEV group and hoping I get antivirals. I’m so angry that the Government is standing by and ignoring the evidence and not putting mitigations in place.😡🤬😤😖😠
Today I start a new chapter in my life. I’m now officially a Senior Lecturer in Children and Young People’s Nursing at
@OpenUniversity
. Looking forward to focusing on children’s nursing again and working on the role out of the pre-registration course.
Numerous NHS staff with
#LongCovid
are reporting HR are preventing their return to work by insisting they can only have a 4-6 week phased return at 50% of normal hours. This goes against all the best practice guidelines.
#NHSHeroToZero
@CIPD
@SOMnews
My latest
@EBNursingBMJ
blog is now live. NHS staff please read it to see what your employers should be doing, infection control teams please read & reflect, chief execs there’s something in there too.
NHS staff need adequate RPE and they need it NOW -
I’ve been writing papers for a quarter of a century but I think the one I am proudest of is this one: . It took me a long time to write. David also had to proof read it several times.
(NB: I have now had my appointment at the stroke clinic.)
Lots of NHS staff with Long Covid feel guilty about not being able to get back to work. Anna Carey describes how she feels in a letter to her colleagues:
2 nurses/midwives with
#LongCovid
who requested a career break to give them time to recover have NOT being granted this. This is MADNESS! Do we want to loose people from the workforce for ever? Another example of the need for national strategic approaches to
#LongCovidWork
.
Great to see this being talked up. Let's get it trending.
@rogerkline
@ClareRayner6
@LCNMUK
Government 'ignores' official advice to increase sick pay for NHS staff with long-term Covid - Vendi Life
I have just spoken to my GP and she has agreed to try and refer me to Tertiary care as my
#LongCovid
symptoms have gone on for so long. I also been referred for a 48hr ECG. Feels like some progress is being made .... my
#LongCovid
buddies will understand my excitement!!
Two exciting things have happened today. First, I have started on anticoagulants - micro-clots found in my lungs (and presumably elsewhere in my body). Secondly I have been appointed as an Honorary Associate Professor in the Institute of Health Sciences
@unibirmingham
.
Today it is 2.5 years since my first covid symptoms. That's 891 days of being ill. I had just started a new job now I am retired (early). I am still waiting for some diagnostic tests. I am now disabled. I am better than I was but nowhere near back to normal.
#LongCovid
Today I was discharged from my local
#LongCovid
clinic just over 2 years since I had my first appointment & 3 years into my Long Covid journey. Am I better? No. Disappointed the clinic only offers workshops about learning to live with Long Covid. Apparently it's over to my GP now
Today is 1st June. NHS staff with
#LongCovid
in Wales do not know what is going to happen to their sick pay at the end of the month. Staff in England await the revised
@NHSEngland
guidance with trepidation. Is this right? I don't think so.
#NHSHerotoZero
#ImmoralandUnfair
@LCNMUK
Important graph here. The Government and public health decision makers don’t seem to want us to know that every time we get an acute Covid infection our risk of getting Long Covid increases exponentially.
If there's no lasting immunity to covid and no upper limit on infections and the CDC's central estimate is a 70% risk of long covid after 5 infections won't most people that don't die get long covid? Isn't this the brutal logic on the current path? What am I missing?
Great news. I’m with
@Plaid_Cymru
- this decision should have been made earlier but very pleased for my Welsh friends and colleagues that this is the case. Welsh NHS staff sick with long Covid stay on full pay - BBC News
My GP just rung. The Bucks covid medicines unit have been in touch with him over the weekend. Because it’s less than 90 days since I last had Covid they won’t prescribe antivirals. Even though I tested negative several times between infections. 😡🤬😤😖😠
12 hours after I rung 111 the duty doctor has just phoned. Apparently the antiviral service is only open Monday-Fri during office hours. I guess this is due to a belief that covid is over (it isn’t) among the Government and many NHS senior managers. 🤞they call me on Monday.
It’s Day 11 of my current covid infection & I’m still testing positive. It’s too late for me to take antivirals but I’d still like a response to my email to
@BucksHealthcare
last week. In the email I asked for a copy of their antiviral policy and the evidence underpinning it.
Being
#CEV
on
#PlagueIsland
is hard particularly so when your partner is admitted to A&E & is still on a trolley 24 hrs later. The lack of infection control measures mean this is a no go area for people like me.
@cv_cev
@EvonneTCurran
@1goodtern
Feeling a little depressed today. Even friends who weren't doing much because of covid-19 are starting to do more - I feel like I am being left behind. My mum suggested the solution is that I should go out more. No understanding of risks or that I am clinically vulnerable.
Just to let everyone know that I stepped down from my role as Chair of
@LCNMUK
last week. I will continue to advocate for nurses, midwives and other NHS staff with Long Covid - see details below.
Today my partner, and since Long Covid my carer, is 70!! He’s not on Twitter but I just want to but it out there how grateful I am 1) for how well he looks after me and 2) that I met him 19 years ago!!
Day 201 update: I appear to have post Covid lungs. Apparently they’re seeing a lot of late presentations. Still in hospital and struggling to breath without oxygen but glad beginning to get some answers. Thanks for all the best wishes.
#CountLongCovid
I'm delighted to announce that after a few technical issues all the way my new website is now live: . I hope you find it useful
There are still a few gremlins to sort out - let me know if you find any!
Today is a new start for me. I left
@LSBU
@LSBU_HSC
yesterday. Looking forward to continuing to edit
@EBNursingBMJ
. Going to take some time out and then set up as an Independent Consultant. Keep following me on Twitter and Facebook to see what I get up to.
@long_covid
@LCNMUK
asked NHS staff with
#LongCovid
how they felt about the changes to covid sick pay provision for NHS staff with Long Covid in England, Scotland and Wales? The results are below.
I am concerned that some NHS staff with
#LongCovid
appear to be having pressure put on them to apply for ill health retirement. In some cases, once the application has been submitted, staff are then being taken down the sickness capability route.
Anyone who thinks the NHS looks after their staff should read this blog by
@rogerkline
.
#NHSHeroToZero
Long Covid: A catalogue of shame – Ali-Twy Consulting UK
Today I’m starting my first adventure as an independent consultant in nurse education and research. I’m flying to Toronto to attend the
@KidsInPain
knowledge translation two day workshop in Toronto. I’ll be writing about what I learn in an
@EBNursingBMJ
blog later this month.
So today David’s phone call with his GP was cancelled due to staff sickness. Again, I’m wondering what this could be due too (I’m being sarcastic). Still no masks or other Covid mitigations in GP surgeries or health care settings. When will this change?
Today I am celebrating
#InternationalNursesDay
& also marking 26 months since I caught covid & developed
#LongCovid
. I am thinking of all nurses out there in a similar position - many no longer able to do the role they love because of ongoing symptoms. 💙💙💙
@LCNMUK
Today I mark the 110th day since I first developed COVID19 symptoms back in March. I am pleased to see the Government/NHS England are beginning to address the issues of those of us with long haul COVID and, what appears to be, post-viral syndrome.
Posting this blog again: . This week I have heard of several nurses with
#LongCovid
being told they can only have a 4 week phased return to work. This is setting them up to fail.
@longcovidwork
In case you missed it yesterday here is this week's
@EBNursingBMJ
Blog written by
@jakesuett
and me reflecting on the experiences of UK health workers with
#LongCovid
:
Evidenced-based infection prevention and control (IPC) guidelines: are just not evidenced-based | Great editorial in latest edition of
@EBNursingBMJ
by
@EvonneTCurran
(free to access).
Look what’s just gone live.
@rogerkline
has written a blog for
@EBNursingBMJ
. Make sure you read it now, Long Covid: The price of risking one’s life to save others? -
@LCNMUK
@JCeoltaSmith
@trussliz
we at
@LCNMUK
would love to talk to you about the issues we are having getting back to work. Some of us have been sacked. Others have had to retire early (but didn't qualify for ill health retirement). Feel free to DM me to arrange a meeting.
If you are concerned about the fact that NHS staff with
#LongCovid
are having their covid sick pay removed please sign this petition. Over 8K people have signed but I'm sure there are more people out there who think this is WRONG:
One of my uncles is in critical care at
@cuh_nhs
(not covid related). Please pray for him or keep him and my aunt in your thoughts. Thanks to all the health care professionals looking after him.
@LorraiSzeremeta
If the NHS cares about its workers with
#LongCovid
(and I sometimes doubt that they do) NOW is the time for action. Unions and the NHS need to lobby the
@UKGovernment
for money to support the return to work of NHS workers with Long Covid as part of their workforce plan.
Today is the 22nd June. NHS staff off sick with
#LongCovid
in England & Wales still don't know what is happening with their pay. In Wales the extension to full pay is until 30th June. In England, some are being told pay arrangements change on July 1st.
#ActionNeeded
@LCNMUK
Your chances of Long Covid following a covid infection increase with each re-infection. You might expect that NHS organisations were ensuring their guidelines guaranteed staff were fully protected against covid-19. This does not appear to be the case: .
@vipintukur
@mariacaulfield
you might want to read this article. Last week you said in a tweet that infection prevention and control guidance was based on clinical expertise. This study suggests
@NHSEngland
advice for Covid is wholly inadequate. Time to acknowledge Covid is airborne.
So today, I am proud (and a little excited) of the work
@LCNMUK
has done since we set it up just over two months ago. We have just launched our website: . You can also follow us on Twitter and Instagram (
@LCNMUK
).
This petition now has over 4,000 signatures - thanks to everyone who has signed it. However, I can’t believe only 4,000 people think our NHS Heroes with
#LongCovid
should have covid sick pay reinstated. If you haven’t done so already please sign it now:
Support for Health Care Professionals with Long Covid returning to work: A national disgrace - . The last of our four blogs focusing on the impact of covid on nursing has gone live.
I’m sure that like me, many people with
#LongCovid
didn’t celebrate the arrival of a new year. Lots of questions about what 2022 will be like. Will treatments be found? Will they be available on the NHS? How much (little) will I be able to do?
#countlongcovid
“I don’t live. I exist. My life has no spontaneity.”
This is life with
#LongCovid
after a ‘mild’ infection March 2020.
We absolutely need to
#CountLongCovid
Thank you
@OT_Skiff
for sharing your story 🙏💕
@drclairetaylor
@mrmickme
A&E are already struggling. My partner spent 30hrs on a trolley in a corridor after being blue lighted into hospital last Sunday - after a 6 hr wait for an ambulance. We need to stop spreading Covid NOW. I’ve got my 2nd Covid infection in 3 months it’s not good. Long Covid sucks.
Some good news. I have been been awarded Personal Independence Payment (PIP). Thanks to everyone who helped and advised me during the application and assessment process.
Amazingly it’s a year ago today since I got my first COVID19 symptoms which led to Long Covid. While I’m now much better, I’m still not anywhere near fit enough to go back to work. It’s been an interesting year & looking forward to being fully recovered sooner rather than later.
Day 145 of
#LongCovid
today. Celebrating small achievements like being able to drive the 20 mins to my parents’ house for the first time since 29th Feb on Friday. Managing to go for a 1000 step walk outside the house yesterday.
#pacing