Blog by Alison Twycross – All About Long Covid

Supporting Healthcare Heroes UK: A charity in development

Today is International Long Covid Awareness Day. Given this it seemed appropriate to write a blog outlining the work done so far to set up a charity for healthcare workers with Long Covid as well as let you know how you can help us take this work forward.

Who are we?

The work to set up the charity is currently being led by three founding trustees all whom have Long Covid:

Dr Alison Twycross (@alitwy)
Dr Shaun Peter Qureshi (@shaun_qureshi)
Adrian Powell (@chantillyexpat)

We are also grateful to the support we are getting from a couple of amazing volunteers to get the charity up and running.

Why are we setting up the charity?

Su pporting Healthcare Heroes UK (@UKHealthca85341) has been set up:

To prevent and alleviate poverty and financial hardship for healthcare workers who developed post-acute covid-19 complications (Long Covid) following Covid-19 which was acquired because of carrying out their duties during the pandemic, whether or not they are still employed, by providing financial grants to individuals and/or other organisations and charities with similar aims.

The Government has continually stuck to its erroneous belief that Covid is over despite clear evidence that a significant proportion of the population have been affected by this mass disabling event.

Getting back to work with Long Covid: Where is the creativity?

Today I attended, nearly three years into my Long Covid journey, a workshop run by my local Long Covid clinic and the Richmond Fellowship on employment. One of the key messages was that it is possible for people to return to work with Long Covid but that this needs creativity.

After attending the workshop, I went onto Facebook only to find yet another NHS worker with Long Covid has been dismissed because they can’t say when they will be back at work. Last week I posted on Twitter stating:

In the past few days numerous NHS staff with #LongCovid have posted on Facebook saying HR are preventing their return to work by insisting they can only have a 4-6 week phased return at 50% of their normal hours. This is setting people up to fail and goes against all the best practice guidelines. Anyone would think we didn’t have a workforce crisis let alone a moral obligation to support our staff. #NHSHeroToZero
Continue reading “Getting back to work with Long Covid: Where is the creativity?”

A personal perspective of Long Covid: As a patient and a professional

I caught Covid-19 in March 2020. I never got better. Nearly three years down the line I am better than I was but still nowhere near back to normal. I resigned from my academic job last year having taken my occupational pension early when I ran out of sick pay in 2021.

My ongoing symptoms include: fatigue, headaches, and cognitive dysfunction (commonly referred to as brain fog) – click here for more information about cognitive dysfunction and Long Covid. Other symptoms come and go – new ones appear. This is hardly surprising when more than 200 Long Covid symptoms have been identified. During the time I have had Long Covid I have received very little support from healthcare professionals – most of the care I have been offered is because I asked for it to be put in place by my GP. Even when I persuade my GP to do a referral it often bounces – e.g., both my neurology and endocrinology referrals last year were “sent back to my GP”.

Long Covid ramblings: Action is needed NOW

This week I want to point you in the direction of some of the @LCNMUK blogs published over the past couple of months where nurses with Long Covid told their stories. I also want to highlight that Covid Isn’t Over and that many NHS workers with Long Covid are facing financial destitution now that covid sick pay has been removed across the UK. (More information about the removal of covid sick pay can be found here.)

Anna tells her story here.

Dee’s story can be read here.

Jenni’s story can be found here.

Treasa’s story is here.

Brenda’s story can be seen in this video.

Please share these stories far and wide. If you are living with Long Covid please feel free to send me your story.

NHS staff with Long Covid: Information needed

Today is 1^st September which means that NHS staff with Long Covid in England and Scotland are no longer receiving Covid sick pay or on amended terms and conditions. Staff in Wales have been in this position since 1^st July. This is not good enough. Our NHS heroes are effectively being abandoned through no fault of their own.

I am so incensed about the changes that I am writing this blog even though Long Covid Nurses and Midwives UK (@LCNMUK) is taking a social media break until later this month. Roger Kline (@rogerkline) summed up the situation in his blog for Evidence Based Nursing in July 2022. He called for 10 things to happen.