Why It's Important You Respond To The Public Consultation

Ever feel like you’re just not being listened to?

The upcoming Public Consultation on Long Covid will allow you to make your voice heard. It provides an opportunity to share your experiences, highlight challenges, and influence the policies and services directly affecting your life. There are changes being proposed and discussed that will impact all of us for a long time.

You can help shape a more informed and supportive approach to Long Covid in Scotland by taking part. And beyond making an impact, sharing your story can feel empowering and cathartic, giving you the chance to speak truth to power.

What Are Public Consultations?

Public consultations allow individuals and groups to give feedback on government plans, policies, or services. For example, the Scottish Government has run consultations on health services, funding priorities, and the National Care Service. Your input helps decision-makers understand what works and what doesn't from the perspective of those directly impacted.

"Consultations can be used to: inform the development of a particular policy, help decisions to be made between alternative policy proposals finalise new legislation before it is implemented."

- Scottish Government Guidance

You can often respond online, making the process accessible from your home. Public consultations usually provide accommodations, such as large print documents or submitting responses via phone. If accessibility is a concern, check the consultation details or contact the organisers for support.

Your Voice Matters

"The Squeaky Wheel Gets The Grease"

Long Covid has affected over 180,000 people in Scotland (ONS, 2024). Yet, one of the most common feelings is that we are not being seen, not being listened to - By responding to consultations:

• You bring lived experience to the table: Policymakers don't understand the day-to-day realities of Long Covid unless we tell them. We must tell them Repeatedly. We must tell them Loudly.

• You challenge assumptions: Sharing your story can highlight service gaps or dispel the myths about Long Covid.

• You influence change: Your input can help secure funding, improve healthcare services, and shape public understanding.

  Practical Steps to Respond

  Here's how you can make your voice count:

  1. Find relevant consultations: Visit Consult.gov.scot or follow Long Covid Scotland's social media for updates. We'll share when there are relevant ones.

  2. Prepare your response: Before starting, jot down key points you want to share. Focus on how Long Covid has impacted you and what changes are needed. Need help with this? Check out our plan for “How to write a Long Covid Impact Statement” 

  3. Answer honestly and clearly: Use plain language and be specific about your experiences. For example, if waiting times for Long Covid clinics have affected you, explain how. If there is no long covid clinic in your area, tell them about that.

  4. Include evidence where possible: If you've seen statistics or studies supporting your experience, mention them. But focus on your lived experience; that's what is most valuable. How has Long Covid affected you at home, school, work and more. This forces them to see us as humans, not statistics.

  5. Check accessibility options: If you're struggling with the format, contact the organisers for help. Most consultations can provide alternative submission methods if needed.

     What Happens After You Respond?

     Once the consultation period closes, the responses are analysed and summarised in a report. This report informs decision-making and is often published online. While change can take time, public input is a critical part of the process. It can help keep Long Covid on the agenda. It can put your experience on the public record.

     Key Take-Aways

     Taking part in public consultations about Long Covid can:

     • Help you feel heard and empowered.

     • Highlight gaps in existing services and policies.

     • Influence real change for better healthcare and support.

     To get started, visit Consult.gov.scot and look for active consultations. Your experience matters and your input could make all the difference for you and others living with Long Covid.

     It can help us keep the pressure on the Government with Long Covid Scotland’s demands.

     See Us. Treat Us. Study Us. 

The Balancing Act: This Is What Happens Between Effort & Exhaustion

Living with long COVID is a daily balancing act. For many, even the most minor physical or mental activities lead to a flare-up of fatigue and other symptoms. New research is shedding light on why this happens and what it means for people living with the condition.

A recent study published in The Lancet Regional Health—Europe shows that both physical and cognitive stressors worsen symptoms in people with Long-COVID. The research involved 376 participants tracking their activities and symptoms over 24 days and found that everyday tasks like walking, thinking, or socialising can significantly increase fatigue, pain, and brain fog, among other symptoms. These flare-ups—often called post-exertional malaise (PEM)—aren't new to people with conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, this latest study highlights how widespread PEM has become following the COVID-19 pandemic.

Key Findings

The researchers asked participants to record their activity levels and symptoms every three hours.

• They found that symptoms often got worse within 30 minutes of activity, but in some cases, flare-ups occurred days later.

• Both physical and cognitive tasks led to symptom worsening, with fatigue levels increasing slightly more after physical effort than mental tasks like concentrating or problem-solving.

Fighting Stigma & Making the Invisible Visible.

The fluctuating nature of symptoms can lead to stigma, with some people - even including some healthcare professionals—dismissing long COVID as a psychological issue. This can also even impact decisions on benefits, employment and support. This study now validates what patients and carers already knew: the unpredictable nature of symptoms.

Patients might feel fine one day and then be unable to get out of bed the next because you pushed yourself too hard physically, mentally, or even socially. Greenwood's study challenges this and proves that even minor activities can profoundly impact symptoms.

This study is important evidence that Long-COVID symptoms are not just "in people's heads,". Long COVID is a severe condition with clear, measurable patterns of symptom escalation after exertion. This is a key diagnostic clue for healthcare providers who might be unsure how to recognise Long-COVID in patients or cautious about a diagnosis.

The study also has important implications for how long COVID research should be conducted. Many studies ask people to recall symptoms over days or weeks, which misses the immediate and fluctuating impact of activities and can be a struggle for many.  

Studies should measure how symptoms change in real-time, especially after physical or cognitive exertion, to better capture the complete picture of long-term COVID.

Who needs to read this research? 

This study proves that adjustments are necessary for schools, employers, and the benefits system. People with long COVID histories can't simply "push through" without risking severe setbacks. Employers and educators need to take this seriously, and policymakers need to use this to inform policy.

There's still a need for more research. At Long Covid Scotland, we're calling on researchers, policymakers, and health services to see us, treat us, and study us.

This sort of research, measuring the impact of exertion in real-time, needs to be extended wider to explore better treatment options. Tens of thousands of Scots are abandoned in a constant cycle of rest and recovery that limits their ability to work, learn, and participate fully in life.

More Information

You can learn more about the study here-  The Lancet Regional Health—Europe and follow us at Long Covid Scotland for resources and advice on managing symptoms.

References: Greenwood et al. (2024). Physical and cognitive stressors exacerbate symptoms in long COVID: More evidence triggering new research and therapeutic needs. The Lancet Regional Health—Europe.

How to write a Long Covid Impact statement - and why you need one.

Repeating yourself is exhausting, especially if you have brain fog or are pacing your energy. Having an impact statement, printed or saved on your phone, will help you bring people up to speed.

What is an Impact Statement? 

An Impact Statement is a short document that explains your medical history, long covid symptoms, and the impact on your daily life and abilities so you can easily share it with new people to get them up to speed. It’s a bit like a ‘CV’ of your Long Covid. 

The purpose of an Impact Statement is to provide a clear and concise overview of the impact of your condition on your daily functioning without you having to remember it all, or go through it repeatedly. This can be extremely useful in various contexts, such as medical consultations, Human Resources, support workers and even with friends, family and carers.

Any new situation where you need to explain Long Covid, You can quickly and consistently bring people up to speed without using up precious energy. 

What to put in your impact statement 

We've created a breakdown of what we advise you should include in your impact statement. It's your statement, so make it as long or as short as you need. If you want some help getting started, we outline some questions at the end of this article. You will have a strong and comprehensive statement if you answer those questions. 

Introduction: 

This section should include your name, age, and a brief medical history, including the date of the initial Covid-19 infection and the onset of Long Covid symptoms.

Symptoms: 

This part should detail the symptoms you are experiencing, their severity, and their frequency. It's important to include both physical symptoms (like fatigue, breathlessness, or pain) and mental symptoms (like brain fog, anxiety, or depression).

Impact on Daily Life: 

This section should describe how the symptoms affect your ability to perform daily tasks, work, socialise, and other aspects of your life. It should be as specific as possible, detailing any necessary modifications or accommodations and the support you need. Say what you can do, as well as what you can't. 

Medical Care and Support: 

This part should outline your current medical care, including any medications, therapies, or other interventions. It should also mention any support services you are using or may need in the future. Mention both NHS and any private therapies or supplements you pay for.

Conclusion: 

This section can summarise the key points and express your hopes or goals for your future health management. 

How to use your impact statement 

Once you have your statement, you can share it any time you need to bring someone up to speed - a new Doctor, attending a new appointment, an HR person or colleague, when meeting a journalist or politician to campaign - or even family as a reminder. 

You could keep some copies printed out, keep it on your computer or tablet to send in emails or keep a copy on your phone so you can message it - or just show to someone to read. 

Answer these questions to build your impact Statement: 

This framework is a suggestion you can use. Tailor it to what you are comfortable with sharing in the situations you need to. We hope this will be useful and save you time and energy. 

This might be a lot to go through in one go. If you cut and paste these into a word of google document, you can take your time to answer them. Remember this is your statement so it can be a live document that you amend and add to as things change or occur to you. 

INTRODUCTION

• What is your name and age?

• When did you first contract the Covid-19 infection?

• When did you start experiencing Long Covid symptoms?

SYMPTOMS 

• What symptoms are you experiencing related to Long Covid?

• How severe would you rate these symptoms?

• How frequently do these symptoms occur?

• Are there any specific triggers that worsen these symptoms?

IMPACT ON DAILY LIFE

• How have these symptoms affected your ability to perform daily tasks?

• What impact have these symptoms had on your work or professional life?

• How have these symptoms affected your social interactions and relationships?

• What modifications or accommodations have you made due to these symptoms?

• What kind of support do you need to manage these symptoms?

MEDICAL CARE AND SUPPORT 

• What medical care are you currently receiving for Long Covid?

• Have you been referred to a Long Covid Clinic or team 

• (if yes - when)

• What medications, therapies, or other interventions are you currently using?

• Are you using any support services currently?

• Are there any additional support services you anticipate needing in the future?

• Have you paid for any treatments (e.g. Hyperbaric Oxygen, Supplements, Acupuncture or other treatments) 

CONCLUSION

• What are the key points you want to emphasise about your experience with Long Covid?

• What are your hopes or goals for managing your health in the future?

Four Powerful Things Happen When You Volunteer for A Charity

Volunteering with a charity is about helping others, but did you know it also offers numerous personal benefits, making it a fulfilling and rewarding experience?

On the fence or wondering if it's for you? Here's four reasons to consider:

• Life Satisfaction: Helping others has been shown to increase your overall happiness and life satisfaction.

• Skill Development: Gain new skills or enhance existing ones, which can benefit your personal and professional life.

• Social Connections: Meet new people, get moral support, build friendships, and expand your network.

• Mental Health Benefits: Volunteering can reduce stress, combat depression, and provide a sense of purpose.

Why Do People Volunteer for Long Covid Scotland?

Our volunteers either have Long Covid or have someone close in their life who is living with Long Covid. These are some of the most common reasons shared by the volunteer team at Long Covid Scotland:

• Frustration: Feeling frustrated that not enough is being done and choosing to be part of the solution.

• Giving Back: A desire to help your community and support a cause close to your heart.

• Personal Growth: Learning new skills or gaining experience in a different field.

• Professional Development: Enhancing your CV and gaining valuable work experience - or sharing your existing skills.

What if I’m Fatigued?

If you are living with Long Covid, you may find it challenging to engage in tasks, volunteer activities, or employment at the same level or pace as before. Our volunteer team is supportive and understanding of fluctuating symptoms, providing a flexible environment where you can contribute as much or as little as you can. Volunteering with Long Covid Scotland allows you to maintain your skills, utilise your previous experience, and be part of a community that values your contribution and understands your situation.

What Do Long Covid Scotland Volunteers Do?

All sorts of things! Volunteering at Long Covid Scotland can take many forms, from designing social media posts, proofreading letters before they get sent to politicians, attending events, suggesting fundraising ideas or contributing to our committees. Here are some examples to give you an idea -

• Creating Website, Blog, Vlog and Social Media Content

• Administrative Tasks that keep the charity going

• Sharing Petitions

• Protesting and Petitioning Parliament

• Raising Awareness

• Fundraising

You probably have other skills we need that we've not even listed!

This Is Your Chance to Make a Difference.

We're not going to ask you for a big commitment. Most of our volunteers are impacted by Long Covid Fatigue - we get it! But we also know that many people affected by Long Covid, from patients to carers and NHS staff, want to help and have valuable skills and enthusiasm to share.

We're building a team of volunteers where many people can do a little, which will achieve a lot.

Interested in Finding Out More?

Sign up now on our Contact Us page, and we'll give you more information about volunteering.

What you might not know about long-covid

I’ve just staggered home from a 5-minute walk. I felt like I was going to collapse, with jelly legs, chest pain, dizziness, and shortness of breath. This is actually a relatively ‘good’ day – often I’m housebound with fatigue and a range of other symptoms. Lately, my face has been going numb and my mouth doesn’t seem to want to cooperate with what I want to say. So I’m writing about it instead… for me, and for all the people around the world with long-covid.

Some things you might not be aware of:

• Over 65 million people across the world have long-covid (royalsociety.org)

• Numbers in Scotland are believed to be over 187,000 and rising (Scottish Parliament debate on 13th March 2024)

• Very few regions in Scotland have dedicated support, with some clinics only being set up in the past few weeks. Expertise is sparse, with mixed reports about support from GPs. I am fortunate that mine has been supportive, although not fully equipped to refer me due to lack of a coordinated service until now.

• 40% of people surveyed who are living with long-covid said the condition affects their ability to work at all (chss.org)

• The covid virus has been found to leave traces in the body, for example in the brain, gut, heart, and blood. It can also cause micro-clotting and reduced flow in the blood vessels, causing worsening of post-viral symptoms (royalsociety.org)

• In a recent study of cognitive and linguistic difficulties by Professor Louise Cummings, only 1 of 37 people in a sample group have returned to their previous role, and even then, that person has had to reduce their hours to part-time (via The Long Covid Podcast).

Today is exactly 4 years since I had covid for the first time. It’s also long-covid awareness day across the world. In this blog, I aim to raise awareness of what it can be like to live with the condition, and in the spirit of inclusion, suggest some ways to offer your support and understanding to people who are affected. I also want to make it clear that there has been a woeful lack of national support for the condition itself.

My early experiences

I didn’t have to go into hospital when I first had the virus, although I was very close. I had heavy, crackly lungs and a high fever, and couldn’t breathe very well at all. The NHS was simply too stretched and had to hold off new admissions unless absolutely necessary. I consider myself one of the lucky ones… well, maybe at the time.

I have been living with long-covid ever since, and although I’ve made a partial recovery three times, my most recent infection in February 2023 has had a devastating effect on my life. For the time being, I can’t work at all, my social life has pretty much disappeared, and I can hardly go out or do basic things at home. Sadly, this is not my first experience of chronic illness as my husband was diagnosed with MS (multiple sclerosis) in 1997 and hasn’t worked since. He regularly points out that there are some days when I am worse affected than he is, which took me a while to get my head around.

Symptoms can include extreme fatigue, high and low blood pressure, palpitations, brain fog (I mean total blank, not the kind people joke about), hormonal imbalances, nausea, dizziness, digestive issues, and visual and hearing impairments, to name a few. (Note 1).  

As well as having many of the symptoms above, I’ve recently been diagnosed with: 

POTS (Postural orthostatic tachycardia syndrome), where the autonomic nervous system (ANS) dysfunctions and heart rate increases on standing or sitting upright to compensate (Note 2). This can lead to reduced blood flow to the brain and cause dizziness or fainting. Some patients have irregular heartbeats and other cardiac issues – I’m awaiting a cardiology appointment to investigate this.

MCAS (mast cell activation syndrome), where a type of immune cell is sensitive and easily activated, affecting a variety of systems in the body due to histamines and other substances being released. All of this can lead to inflammation. MCAS is thought to affect up to 70% of people with long-covid.

I’ve also had PEM (post exertional malaise) since the start, where I become ill and/or fatigued from even a small amount of physical or mental activity. The effects can last for several days or weeks. Even this short blog took nearly a month to pull together, a bit at a time.

How to better understand someone with long-covid (or any long-term condition)

These suggestions are based on my personal experiences and opinions, and from my perspective as a professional coach. Use your instincts based on how well you know the person.

Be curious about how it is for them, regardless of whether you ‘get it’. Imagine what it’s like in their shoes, without judgement or giving your opinion on what they ‘should’ be doing. Well-intentioned friends and family may suggest that getting out and about and involved in things will help. It can be very detrimental, and pacing is critical. In the majority of cases the person will have explored a range of solutions and are likely to be acting on several of them. 

In mindfulness we talk about having a ‘beginner’s mind’, which can be a useful frame if you don’t have personal experience of chronic illness.

And it may not be appropriate to talk about it, for example if you’re at a social gathering it may not be helpful to ask a lot of questions, but if you’re sitting having a coffee together to catch up, it might be more conducive.

Ask open questions, which help to build understanding and place the focus on the other person, and how it is for them. Listen fully to what they’re saying, and the way they’re saying it.

Just be there. You could simply say “I’m here for you”, “if there’s anything I can do…” and offer to be a listening ear, if they ever feel like talking about it. And sometimes it might just be sitting watching a movie together or dropping off a meal to show you’re thinking of them.

Don’t just take my word for it

I also want to bring in the experiences of people I’ve met whose lives have been turned upside down after having covid. Here’s what they want you to know…

”I live day to day, not knowing if I can walk a distance, even between rooms in my house.”

“I cannot go out on my own often as my energy can drain so quickly that I could be caught out, unable to get back home. Therefore I am now fully dependent on my friends/family for help and support.”

Something most people take for granted is being able to get out of bed and shower or wash daily. That is now a major task for my friend and requires a lot of pacing and planning. Her bed is her best friend at present. Life is passing her by on a daily basis, she can see life outside her window but cannot be part of it. Cognitive function has been taken from her and what she could do she cannot even think about now.”

“I would like people to know… we live day to day not knowing what part of the body will be affected by LC. For example, heart palpitations, hearing problems, visual disturbances, living with chronic pain on a daily basis. Basically fear of the unknown.”

“The look of contempt and disbelief on health professionals faces, colleagues and so called friends.”

“I get fed up with friends asking me constantly “when are you going to get better?” Even though I’ve explained that some days I can walk well, other days I get tired with just going up my stairs. Many of my symptoms are unpredictable. I think that unpredictability is the hardest bit for non long covid people to understand.”

“That I’m still me but I don’t feel, function, respond or behave like me. Ask : how would you feel if that was you?”

“I normally explain it to people who don’t have a clue what long COVID is, I tell them, think of when you have flu symptoms but never getting rid of it”

“I think the worst thing for me after the pain and emotional stuff was feeling massive imposter syndrome if I felt a little bit better. Also all the pushbacks in 2020 about it not being a thing.” 

“So many people say to me ‘You look fine’ or ‘I’m glad you’re a bit better’ when I didn’t say anything of the sort. It’s very frustrating and demoralising.”

A glimmer of hope

Above all, I’d like to highlight how proactive, positive, and supportive the communities of people I’ve met with long-covid have been.

We have depended on each other, in the absence of structured support, and I have found a range of information and solutions to help me navigate through this. Some are holistic and therapeutic, some practical or medical, and often focused on self-care and quality rest. Overall, the understanding of how it is for people in a similar position has spurred me on the most. Special mention for my local group in Falkirk, which is run by inspiring and generous people who are significantly affected themselves. And thank you to the members of Long Covid Scotland who represented us at the Scottish Parliament yesterday, despite a limited response from MSPs.

Shared experiences have helped me to come to terms with where I am now, be in the present, and recognise just how much I AM doing (and have been doing) which is helping me. It has been a rollercoaster of emotions from anger and frustration to grief and joy, and I am still hanging in there. If you know me, you will be aware that I don’t give up easily!

I’ve also realised that it’s never ‘all good’ or ‘all bad’. Even on the days when I am floored with fatigue, and hardly able to string a sentence together, I can still laugh and smile here and there. And if it all feels like too much, I give myself time and space to be present with those feelings. 

My family and close friends have been very supportive and understanding, for which I am eternally grateful.

I hope and believe that I will recover one day. I continue to adapt and am focusing on accepting how life is for the time being.

My final message is about action. It’s time for our governments and a unified health service to acknowledge and address long-covid as the significant issue that it is, for individuals, families, and communities, not to mention the financial impact. This is not going to go away. And although it’s starting to gain a small amount of traction in the different parliaments in the UK, it MUST be focused on results and meaningful support, urgently. There are plenty of people with long-covid who are willing to raise their voices when they have the energy to do so, and I am one of them.

About the Author

Anna is a coach, author, and change expert with a love of language, communication, resilience, mindfulness, and creativity. She has supported thousands of people to navigate through some of the most challenging times in their lives, helping them to find space, freedom, and feel 'lighter' (in their own words). Little did she know, she would be writing about long-covid and facing an uncertain future herself. Now 4 years on from her original infection, she has written this blog to help raise awareness on behalf of the millions of people around the world who are in a similar situation. The blog was originally posted on http://annabellcoaching.com

Notes:

1. Many of these things can affect people with ME/CFS and Fibromyalgia as well, although I don’t have the knowledge or experience to expand on this.

2. Information is from Dr Claire Taylor who is a leading authority on long-covid and a consultant for the World Health Network.

3. Other links:

https://www.bps.org.uk/research-digest/updates-long-covid-and-brain

https://royalsociety.org/blog/2024/02/is-there-hope-for-people-with-long-covid/