Blogs are now published at: http://shh-uk.org/blog
You can also access the blog categories via the main menu from any page on the website by clicking on the blog about all things Long Covid.
Alternatively you can scroll through the blog excerpts below.
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Is Long Covid a disability? Implications for the workplace
Last week in one of the Long Covid Facebook Groups there was a discussion about whether Long Covid was a disability. Given this, in my blog this week I am going to discuss this further.
How is disability defined?
ACAS’ definition of disability is outlined in Box 1. This is a legal definition.
Box 1: ACAS’ definition of disability
(more…)In law, a disability is a physical or mental impairment that has a ‘long-term and substantial adverse effect‘ on a person’s ability to do normal day-to-day activities.
‘Long term‘ means either:
it will affect them or is likely to affect them for at least a year
it’s likely to last for the rest of their life
‘Substantial adverse effect’ means more than just a minor impact on someone’s life or how they can do certain things. This may fluctuate or change and may not happen all the time. -
A tale of 2 tweets: 1 of which must include erroneous assumptions of safety
This week’s blog is the next one in the series being written by @DrEvonneTCurran.
Introduction
The first tweet is from an NHS Trust explaining their position to reduce the use of masks by staff, patients, and visitors (Figure 1). The second is from a different NHS Trust showing how they are deploying High-Efficiency Particulate Air (HEPA) filters in their wards and clinical areas (Figure 2(. Both Trusts must have assessed that no one will be harmed by their planned actions. As the actions are different, one adding and one removing controls, clearly, one of their assessments must include erroneous assumptions of safety.
The first tweet
Let’s start with the rule – what relevant Fundamental Standard does the Care Quality Commission (CQC) require for people safety:
You must not be given unsafe care or treatment or be put at risk of harm that could be avoided.
Figure 1: The first tweet
For the first NHS Trust to meet this fundamental standard, and for there to be safety going forward with reduced mask usage, there would need to be zero nosocomial covid infections at present, and an assessment that reducing controls would present no additional risk.
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Long COVID and Driving
This week’s blog is written by Ellen Chisman, Occupational Therapist, Leeds Long COVID Rehabilitation Service.
For some, being a driver is a key part of operating and managing daily life.
The prospect of not being able to drive can be difficult, even something we may avoid addressing.
But there are responsibilities drivers have around their abilities and safety to drive. Long COVID has multiple symptoms and factors which means there can be implications around driving. This is something we recognised we needed to explore further in the Leeds Long COVID Rehabilitation Service.
A couple of colleagues and I spent some time increasing our own knowledge and understanding around driving guidelines, and also our responsibilities as healthcare professionals. We discussed Long COVID and how ability and safety to drive may be impacted. Key information for staff was cascaded, and the information sheet developed for service users shared. Our holistic assessments explore whether someone is a driver, but a discussion about driving may also be prompted e.g. from someone’s descriptions of their symptoms or related issues like sleep. I’ve shared the process we went through to highlight some of the considerations for those reading who may be drivers with Long COVID and/or people working with those with Long COVID.
Some symptoms of Long COVID could impact someone’s ability and safety to drive. This relates to both safety to themselves, and to others. Symptoms such as fatigue or “brain fog” can cause difficulty with alertness, processing information, decision-making and reaction times. It could also be issues that cause distractions, e.g., pain, breathlessness, or palpitations, depending on severity.
It’s also important to consider related factors, such as disturbed sleep as mentioned previously. Someone’s mental health could impact ability and safety to drive depending on the nature of the issues and severity. Both low mood and anxiety can cause deficits in executive functions (memory, planning, sequencing, logical thinking, adaptable thinking, decision-making, self-control). Feeling agitated or irritable is also something to consider, and some people we see report changes to their emotional regulation such as having less patience.
Medications taken to help symptoms could cause side-effects, impacting driving safety. Pain killers, for example, can have a sedating effect.
Key things to note regarding driver responsibilities are outlined in the box below below:
It is your responsibility to ensure that you are safe to drive, and that you do not drive if you do not feel safe to do so. You can be fined up to £1,000 if you do not tell the DVLA about a medical condition that affects your driving, and your insurance will be invalid. You may be prosecuted in you’re involved in an accident as a result. There are some health conditions that need to be reported to the DVLA, and others that only need reporting if the condition or treatment affects your ability to drive. We strongly recommend people use the updated DVLA guidance about specific conditions online Check if a health condition affects your driving: Find your condition on the A to Z list – GOV.UK (www.gov.uk) or calling DVLA Medical Enquiries 0300 790 6806. Informing the DVLA does not necessarily mean you will lose your license. They will collect the information they need to make a decision, and their website has guidance under what conditions you can keep driving whilst the decision is being processed. You can have an assessment on your safety to drive with your GP, and there are also places you can be referred to for a practical assessment.
If you are advised not to drive by a healthcare professional, or told you need to inform the DVLA of conditions but do not follow this advice, the professional can inform the DVLA if they are concerned
It’s worth mentioning driving in relation to the 3Ps of fatigue management; Pacing, Planning, and Prioritising, which can be helpful for managing other symptoms too. Variability in symptoms with Long COVID is common, with some days better than others. It can be a good idea to have a “plan B” for travel if you are not up to driving. Travel can itself be fatiguing and cause an increase in symptoms. You might want to consider which trips you need to do on difficult days, but also whether an alternative could be considered e.g., if a lift is available or funding a taxi is an option. Unfamiliar and busy routes or worries about getting parked can cause additional strain. However, driving can be very advantageous, and alternatives may be difficult to arrange. It may be helpful to do some planning around your journey- what time of day you go, what route, where else can you park, where you can take breaks. Where possible, avoiding situations where you are relied upon to drive someone else, or there is a plan B in place if needed. For journey needs related to work, people can self-refer to Access to Work for an assessment and possible grant for things like taxis.
Driving can be a sensitive subject to discuss. It can be seen as someone’s independence or “lifeline” to accessing things out of the home. However, drivers needs to take responsibility for ensuring they are safe to drive, and this is in relation to any condition not just Long COVID. Healthcare professionals also play a part in asking questions, sharing information, and acting on concerns.
Sources: DVLA website and General Medical Council website accessed March 2023
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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:
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 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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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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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
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