Providing support for people with Long Covid

Providing support for people with Long Covid

In February 2022, 2.9 million people of working age had experienced persistent Covid-19 symptoms for more than 12 weeks.* With 1.4 million finding their Long Covid symptoms adversely affecting their lives,** the scale of the problem is becoming increasingly concerning, particularly as infection and reinfection numbers continue to be high.

"The participants valued having a space where they felt understood and safe enough to open up. They learnt ways to manage their Long Covid and they also had fun." - Lisa Baum, Fellow

The NHS Long Covid clinics are struggling to provide adequate support, with no known cure or clear treatment plans. Most people are being told they will just get better with time. Additionally, the longevity of the illness is still unknown, with an estimate of 430,000 having been ill for at least two years.*** I am one of those people.

It is estimated that 800,000 people had left employment by early March 2022,* creating a growing economic cost to this illness. However, many people are also finding their lived experience of Long Covid is often overlooked or dismissed by medical professionals, friends and family. As a result, feelings of isolation, hopelessness and despair are common.

A participant on my Long Covid Support programme summed it up perfectly: “Long Covid can be a debilitating chronic illness that falls in the space between emergency care and being well. People are left to navigate huge changes in every aspect of their lives, often without support. It can take away so much of someone's joy and ability. The unknowingness of the illness can give a sense of hopelessness.”

With this in mind, and inspired by my own experience, I designed a free, holistic, 12-week Long Covid Support programme in Peckham, south-east London, funded by a Covid-19 Action Fund grant from the Churchill Fellowship. It felt important to provide each person with a space to be heard, where they could just be themselves without having to pretend to be OK. While I aimed to support the participants with managing their Long Covid and improving their wellbeing, I hoped that the holistic approach could also help with some symptom reduction while remaining realistic about expectations.

The programme for 12 people consisted of:

  • 12 weeks of restorative, aromatherapy yoga.
  • Healthy lunches for the 12 weeks.
  • Six weeks of support group.
  • One moxibustion workshop.
  • Five weeks of group auricular acupuncture.
  • A choice for participants of six weeks of one-to-one support with acupuncture, shiatsu massage or counselling.

The two main symptoms reported by participants were fatigue and brain fog. However, each person had a wide variety of symptoms, such as breathing issues, headaches, nervous system dysregulation, increased heart rate, Postural Tachycardia Syndrome, sleep problems, neurological issues, muscle and joint pain, stomach issues, tinnitus and skin burning.

The list could go on, and while some main symptoms overlap, each person's specific mix of symptoms was unique to them. The lack of understanding about the condition is often internalised into self-doubt and confusion about what is happening. The group course assisted with this, as one participant noted: “The most important aspect of the group was the validation that whatever was going on with our health, we weren't the only ones which is comforting as I thought it was all in my head for a while.”

It was a moving process to facilitate. The participants valued having a space where they felt understood and safe enough to open up. They learnt ways to manage their Long Covid and they also had fun: “The weekly themes and prompts could have us talking all day. I found each talking session highly engaging in a gentle way and found it helpful to check in and acknowledge the good as well as the challenging.” They made new friends, and now stay in touch via a Whatsapp group. Notably, all participants reported some improvement in their two main identified symptoms and a significant improvement in their general wellbeing.

Feedback has been very positive, demonstrating the power of bringing people together in a supportive and holistic programme:

  • “It helped my emotional and mental wellbeing, which has been really low at times during Long Covid. I’m feeling emotionally and mentally much more supported, knowing there is a group that understands everything I'm going through.”
  • “To finally have some local peer support. Spending a morning a week with people who fully understand the struggles of Long Covid has been so valuable.”
  • “I hope this course continues as there is so little out there for this new chronic life-changing illness, particularly one which understands exactly what is needed. I also think it's vital it continues as there are treatments for long haulers, but these are still inaccessible unless you are financially secure. The value of talking/sharing with others who understand what you are going through is paramount as, by its nature, Long Covid is isolating and to some degree invisible to others.”
  • “This programme has been a lifeline. Long Covid is such an isolating condition that having a safe space where you can talk and feel supported should be available to as many people as possible.”
  • “It has been a fantastic experience that has helped me massively with my management of Long Covid. Thank you so much. I look forward to coming each week and have learned a lot, and feel listened to and cared for.”
  • “New friends feel very special when some existing relationships have fallen away. Each aspect of the programme has brought newness and nourishment into my life. I will take away many tools to aid relief and recovery. Thank you!”
  • “The general tips and tricks towards more restorative recovery practices have helped me feel somewhat empowered in managing my energy levels as well.”
  • “People! The support, not feeling alone and sharing experiences and tips have been invaluable. I can't thank you enough for putting this program in place. It brings tears to my eyes thinking of how life-changing this has been for me. I was completely lost. I still have my low days, but Fridays always put a smile on my face!”

Clearly, more local, in-person support is needed for those struggling with long Covid. Following the success of the support programme, I have set up The Long Covid Support Project CIC, to further support and connect more people with Long Covid. As far as I'm aware, there isn't another Long Covid programme like this in the UK.

It costs a lot to run such a thorough, holistic programme for a small group of participants, but it works. I will be exploring avenues for future funding, to continue providing such crucial and effective support. The fact that the programme was offered for free was an important aspect: it took away the financial burden of sourcing treatments and was very much appreciated by all. As one participant said: “Please thank the Churchill Fellowship. When I am earning again, they will be top of my charity donation list.”

References

*https://www.port.ac.uk/news-events-and-blogs/news/study-finds-long-covid-has-a-significant-impact-on-uk-workforce

**https://www.bmj.com/content/377/bmj.o1391

***https://www.theguardian.com/society/2022/sep/01/430000-britons-have-long-covid-two-years-after-infection-says-ons

Disclaimer

The views and opinions expressed by any Fellow are those of the Fellow and not of the Churchill Fellowship or its partners, which have no responsibility or liability for any part of them.

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