The blog about all things Long Covid

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  • Long Covid as a multi-system disease: What the research tells us

    This week’s blog is written by Dr Elisa Perego MA PhD (@elisaperego78), a patient and a researcher, who is affiliated as an Honorary Research Fellow to University College London and a Long Covid Kids champion.

    Long Covid is a multi-system, heterogeneous disease. As a disease entity, Long Covid can basically affect all systems and organs in the body. This does not mean everyone with Long Covid will have proven pathology in every organ – but that damage, across different patient groups, can appear, basically, everywhere in the body. Some people will have physical damage documented only in one organ. Others will have physical impairment and biological abnormalities documented in many organs and body systems. Persistence of SARS-CoV-2 – or parts of it – in various body tissues is increasingly documented in the scientific literature.

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  • 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?

    Supporting 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.

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  • How living with Long Covid gave me a new perspective on life

    This week’s blog is written by Holly Johnson a nurse with Long Covid.

    When I reflect on when I became ill with covid-19 I realise what a big eye-opener it was for me; to understanding what was going on politically in this country, how people are treated in the workplace as well as giving me a new perspective on my own personal circumstances.

    I find it difficult because I know thousands are worse-off and/or are in the same boat. I also feel fortunate because I survived and so many didn’t. Whilst it’s important to remember to feel gratitude for our survival, it’s also important to talk about:

    • Our experience and raise awareness of the prevalence of long covid in adults and children
    • The impact it has on our lives
    • The impact it is having to this country’s workforce
    • Where the gaps are in terms of research
    • Being recognised as a disability
    • Being recognised as an industrial disease.

    There are also gaps in support and treatment of long covid and many of us are struggling financially whilst being unable to work.

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  • The 4th Mode of Nosocomial Transmission – Airborne Dissemination

    This week’s blog is 6th in a series by Dr Evonne T Curran (@EvonneTCurran).

    The pre-pandemic Infection Prevention and Control (IPC) model for respiratory transmission (droplets or aerosols) with droplets being the dominant mode is un-evidenced. Although this has yet to be admitted by some guidance writers – the evidence for airborne infection is overwhelming. Much of what I have been trying to do is persuade people that most respiratory infections including SARS-CoV-2 are airborne. I naively thought that if the new paradigm was accepted (everything ≤100μ being inhalable), this would naturally lead to the correction of control measures and the introduction of indoor air quality and respirators. This is yet to happen.

    However, the further I investigated the existing 3 Modes of Nosocomial Transmission (MoNT), and the 3 corresponding precautions (airborne, droplet, contact), the more I realised that these modes of transmission omit another MoNT altogether – Airborne Dissemination. Having been ignored when demonstrating that the droplet or airborne paradigm needs amending, perhaps this argument – you have omitted a 4th MoNT altogether – might yield better results.

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  • My struggles with PIP

    This week’s blog is being posted anonymously by a nurse with Long Covid. In it she reflects on how difficult it has been applying for PIP (Personal Independence Payment).

    Introduction

    I had the idea of writing this blog a good few weeks ago but it has taken me a while to really get the motivation to write it. I thought it would be a good topic to write about but as I reflect on my experience with PIP (Personal Independence Payment) so far, I think I am just deflated hence the lack of motivation. So far it has been a truly demoralising experience. However I urge any of you with Long Covid to apply as I feel the more of us that do the more they will learn about this condition. And maybe one day they will realise that their assessment is not fit for purpose.

    First application for PIP

    When I first became really unwell in the Spring/Summer of 2021 a few health professionals advised me to apply for PIP. At the time my fatigue was so severe I hardly left the house and when I did I walked very little, drove short distances and really didn’t do much at all. The health professionals felt that I would definitely meet criteria and I should apply so I trusted them and took their advice.

    As a community children’s nurse I had filled in many a DLA (Disability Living Allowance) form with parents and been successful on first application. I had just helped my sister apply for her daughter with Autism and ADHD so how hard could this be? I was very naive as to how different PIP was and how the Department of Work and Pensions would deal with the application. But I also naively thought that after paying my taxes and national insurance and advocating for others for 22 years then I would be entitled to some help now I was suffering.

    I diligently filled out the form thinking I was giving enough information about my difficulties. I felt that as a nurse I would be able to get across the severity of my Long Covid symptoms and how this was impacting my life. About 6 weeks later I had about a 2 hour phone call with an assessor who was very empathetic to my issues and I really thought I was in with a chance! However a few weeks later I received the letter back from them and I had been awarded 0 points. Although frustrated I just accepted it. At this point I knew little about the process so I did not apply for mandatory reconsideration. I improved enough to return to work later that year on reduced hours so I thought no more of it.

    Second application for PIP

    When I caught covid again in February 2022 my long covid deteriorated and by early summer my symptoms had exacerbated enough that again a few health professionals advised me to apply for PIP. I knew a bit more having read other’s experiences on Facebook pages. But this time I sought advice. I read all the information on the Citizens Advice website.  My private health practitioner who was treating me for Long Covid and vaccine injury wrote a supporting letter and gave me tips on how to explain my problems and issues. I even completed the form whilst having hyperbaric oxygen therapy! I took my time writing it and explained my history and current symptoms in more detail. I hoped that now Long Covid had been around for a while then it would be more widely understood by the Department of Work and Pensions.

    This time it was 3 months after applying that I had my phone call with an assessor. My private medical practitioner joined the call to help me advocate for myself and explain the severity of my Long Covid symptoms. Again, I had a really empathetic assessor who took her time to really understand my difficulties. Since applying I had actually deteriorated further and I was now on oxygen at home for about 4 hours a day. My daily routine was and still is full of oxygen therapy, supplements, medication, meditation, red light therapy, resting, napping as well as trying to be a mum, a wife and be ‘me’. I had been off work for almost a year. I knew that a lot of the questions were not relevant to me and were just being asked as part of the process but I felt that the severity of my treatment plan would give me enough points to be awarded PIP.

    About 6-8 weeks later I received the letter back from PIP and this time I had been awarded points but not enough to receive payment. How could I not qualify? My husband walked in shortly after I opened the letter and I burst into tears. This time I was angry…how sick did you have to be to qualify? I wasn’t well enough to work but I was too well for PIP? It just didn’t make sense.

    Going for mandatory reconsideration

    I am currently going through mandatory reconsideration after again seeking more support from the RCN welfare team so I can’t go into details about my case but one thing that has really struck me with the assessment is that if you are able to manage your own treatments you will not be awarded points in that section. So although I am on oxygen for 4 hours a day and numerous medications and supplements, as I am able to manage this myself and turn the button on to my oxygen I don’t need help and therefore don’t get any points. It does not seem to matter how long your treatment is, if you are independent with it then 0 points. 

    This process started in July 2022 and it is now February 2023 and part of me has wanted to give up many times but unless more of us with new conditions like Long Covid apply then the Department of Work and Pensions won’t get to see the numbers who are struggling and require help. I have been told that it is hard for conditions like Long Covid to fit their assessment boxes. I certainly don’t have the energy to fight their assessment criteria but the whole process seems unfit for purpose and certainly does not seem to support those like me who can function minimally but are too sick to work.

    I will wait to hear about my mandatory reconsideration but I hold out little hope. I am not sure I have the energy to go to appeal but I will consider it. After trying lots of treatments and spending quite a bit of money I am slowly improving. I understand that at appeal they assess you at the time and not retrospectively so I am not sure I can deal with that stress. I think what the hardest thing of all is that I truly thought that when you got ill you would get support but for those of us with Long Covid we are stuck. A new condition not recognised by the medical world, the government, and sadly for many of us those closest to us. 

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  • How the RCN Foundation can support staff with Long Covid

    This week’s blog is written by Deepa Korea (@deepa_korea), RCN Foundation (@RCNFoundation) Director

    About the RCN Foundation

    The RCN Foundation is an independent charity and grant-maker. We were set up in 2010 when the Royal College of Nursing (RCN) separated its charitable activities from its trade union and other activities. Our purpose is to support and strengthen nursing and midwifery, to improve the health and wellbeing of the public.

    The Foundation supports nurses, midwives, nursing associates, healthcare support workers, student nurses and midwives, and retired nurses, midwives and healthcare support workers in the following ways:

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  • Piloting a new pathway to support people living with Long Covid

    This week’s blog is written by @StrongZoestrong and colleagues from @pogo_health. Their website can be accessed by clicking here.

    “I got great help, especially learning the breathing exercises and how to use my lungs properly. I’d recommend the service to anyone. In fact, my neighbour had COVID, and I told her all about it, about the breathing and how to plan your day”. – Catherine, 67

    You only have to watch the recent BBC Panorama Forgotten heroes of the covid front line to discover that Long Covid hasn’t just gone away. It is in fact very much still present in our communities and even more so if, like us, you work in the health or social care sectors.

    In Scotland in 2022, our GPs were struggling with ideas on how to better support Long Covid patients and were overwhelmed with appointments. The only referrals that they could make involved significant waiting times. At the same time, charities such as Chest Heart & Stroke Scotland (CHSS), who had the resource and skills to help were not getting referrals through from primary care.

    Pogo Digital Healthcare, NHS Lothian and Chest Heart & Stroke Scotland in partnership, created an integrated digital care pathway, enabling patients to receive tailored support straight away, using a mobile application MyTailoredTalks to connect services across sectors.

    MyTailoredTalks features a self-assessment questionnaire, which upon completion generates tailored information to support each individual patient. The content may include information about common symptoms including fatigue, breathlessness, and difficulty concentrating, as well as advice catering to issues such as getting back to work and coping financially.

    The platform also offers a symptom tracker and includes an area where patients can request a call-back from the Long Covid Advice Line provided by Chest Heart & Stroke specialist nurses.

    This short film explains how the pathway works MyTailoredTalks for Long Covid

    Over 26 GP practices and 200 patients have now used the pathway, and feedback so far has been positive. Whilst this pathway has not been designed to tackle complex cases of Long Covid, it has been shown to support people struggling with some of the most common symptoms. The hope is that over time, pathways such as ours will provide enough support to less complex cases, freeing up capacity in the system to better support those requiring more specialist interventions.

    To find out more about our pilot please read our recently published White Paper Supporting Recovery from Long COVID: A digital care pathway

    This short film explains how the pathway has supported one patient.

    The quotes below are from other people who have used the pathway.

    “It felt very supportive to speak to someone from CHSS and know that someone understood and was sympathetic to what I was going through. Having this service is a must for people in my situation. We all need that support.” – Chloe, 26

    “I felt very lucky to be accepted on to the pilot programme, and I feel it had made a difference to me. The guy I spoke to at CHSS reassured me I was doing the right thing in managing my symptoms and gave me good advice about putting things into practice, which isn’t always easy to do.” – Mark, 52

    We warmly welcome questions and/or feedback around our products and projects. We also have a mailing list if you would like to be kept up to date with our latest developments. Please get in touch at info@pogodigitalhealth.com or follow us on Twitter @pogo_health or LinkedIn. Our website can be accessed by clicking here.

  • “If you don’t tell people the truth about COVID, how can you expect people to make good judgements about risk.”  Kernow Jones

    This week’s blog is by Dr Evonne T Curran (@EvonneTCurran).

    For me this pandemic is a simple ‘consequent argument’ (if P then Q), i.e., if airborne transmission is evident, then recommend airborne precautions. The challenge is that this argument is not universally accepted even though airborne transmission is considered the main route in this UK government document on ventilation.  However, the importance of this argument has begun to seem moot in the eyes of many, as precautions have been lifted, personal experience of COVID, is ‘it’s not that bad’, and the government’s position of ‘let it rip’ has not killed anyone they know (yet). So, this blog must show that the ‘consequent’ argument’ is still worth fighting for. Which brings us to the above quote – what is the ‘current truth’ about COVID?

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  • 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

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  • 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”.

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