As an NHS nurse of 20 years, UNISON member Kerry Davies (pictured above, middle) has dedicated her working life to taking care of patients. However, since developing long COVID in 2020, Kerry’s focus has shifted to the care available to healthcare workers, who are also living with the long-term impact of the virus.
In the UK, it is estimated that two million people experience long COVID. It looks different for everyone. The NICE guidance on managing long-term effects of COVID-19 identifies long COVID as: “signs and symptoms that develop during or after COVID-19 and continue for more than 12 weeks and are not explained by an alternative diagnosis”.
For Kerry, one of the most persistently debilitating symptoms of long COVID has been cognitive difficulties: “I’ve ended up with communication difficulties and obvious speech problems. I’ve struggled to process conversations at times and have developed slurred, muddled speech.”
Her advocacy work on the issue began when Kerry’s trust, University Hospitals Morecambe Bay NHS Foundation Trust, was commissioned by NHS England to run a long COVID network. Kerry gave a presentation. “I started off fine and after, maybe, 10 minutes, they could see my difficulties kicking in. I was slurring and muddling my words.”
But her presentation was impactful, and Kerry was invited to do more. At another, the experience of care lead for NHS England approached Kerry to make a video about her experiences with long COVID, which she could play during the presentations instead of having to speak the whole time. Kerry has since given numerous presentations on long COVID, including to the Nursing and Midwifery Council.
She has also featured on a Royal College of Speech and Language Therapists (RCSLT) podcast with Professor Louise Cummings, who is researching cognitive linguistics difficulties in long COVID.
In October, Kerry won a Giving Voice Award from the RCSLT for her tireless support for their policy and influencing work on long COVID, specifically on how it impacts people’s communication.
Kerry is thrilled that her work has been recognised: “I feel like I’ve won for everyone else who just hasn’t got the energy or ability to speak out. Some people are completely bed bound with long COVID, and it makes me so sad. It’s validating to know that people are listening to me.”
Separate to her advocacy work with the RCSLT, Kerry has contributed her experience to the NHS long COVID framework for nursing midwifery, and care staff, and is a founding member of Long Covid Nurses & Midwives UK, a group set up to advocate for nurses and midwives in the UK living with the chronic condition.
“It’s so saddening to me, as I know there’s not enough support and flexibility for nurses and midwives with long COVID. Many have already lost their jobs. We urgently need to step up the support.
“There is a vast amount of research, evidence and articles out there. But we need much more basic education for all employers, unions and health professionals to truly understand what this is and how best to support others.
“This is not about being tired. It’s about not functioning. Long COVID is an invisible illness, but if people spend enough time with me, it becomes visible. I just want to speak up, because people often can’t see it.”
Kerry describes how long COVID caused her to lose her identity: “I used to run a lot, I was fit, and I never stopped speaking. Now, I’ve lost the ability to physically function and interact at times. I’ve lost the ability to socialise for long periods of time.
“I will not stop advocating for patients and healthcare workers. Long COVID comes in different forms, but the underlying theme is, sadly, often the same: not being heard, lack of support, and many people still not understanding it at all.
“The amount of people with this condition is huge, but we’re still not really talking about it. Without employers making adjustments, many more people are at risk of being dismissed and losing their registration.
“It’s wrong and unfair. We don’t want to lose any more valuable key workers and healthcare staff. We need a different way of working to support others going through this”.
Hi,
I want to commend Kerry for having the strength and conviction to keep on pushing for recognition and help Long COVID sufferers.
It’s not only nurses though, in our Department almost everyone who has had COVID has some kind of lingering effects from having has COVID. Two of us coming up for 2 years and looking like symptoms might be permanent.
There’s not enough research & treatment available and it’s a whole person issue.
Keep it up
Best Wishes to all of us Long COVID sufferers.
Hi Kerry I wish you all the best in your wonderful work in support of Long Covid sufferers. As a person who is going through the difficulties that Long Covid brings in your life and how it has impacted on your day to day life. It is an invisible illness, not understood by people who has not experienced it. Well done for bringing this to the public domaine in your capacity and talking about it. I am going through a similar experience and it seems that no one in my trust or trade union are ready to listen and brushing the issue aside and ignoring me. I will continue to highlight the issues and was inspired by you hard work. Best wishes.