Support spaces for people with Long Covid

In the third of our Opinion series on Long Covid, Michael MacLennan reflects on founding covid:aid.

Based in Scotland, Covid-19 charity covid:aid is here to assist the more than one million people across the UK affected by Long Covid. It has been set up to act as an open and collaborative partner for healthcare providers, charities, and other groups – creating a growing support community sculpted by the voices of its members.

The personal motivation for starting covid:aid began during the Christmas period of 2020. Discovering that there was no visible Covid-19 charity in the UK, it was evident how every single person had been significantly affected – in ways which could be similar, but which were often unique in their combination.

This is especially true of Long Covid, with patients experiencing long-term issues as a result of COVID-19 reporting more than 200 symptoms across 10 organ systems (this link will take you away from our website). For that reason, it was vital that covid:aid could be set up as a community reflecting the needs of its members, and that it could act as a collaborative platform – looking to showcase and point to the best places for supportive services wherever they may be.

We launched in May 2021, and so far have already delivered:

• An innovative Support Community platform: a professionally managed safe space where we host Live Q&As, tailored support Groups, and much more for those significantly affected by Covid-19;
• High-quality bespoke digital Courses on Long Covid symptoms and issues developed and delivered by subject matter experts;
• Professional online bereavement counselling to help those affected by loss;
• An in-depth Information and Advice section with more than 130 articles on a diverse array of Covid-related issues;
• A comprehensive Get Help service pointing to over 80 different and high-quality sources of support;
• Partnering with British Lung Foundation on the production of their NHS-funded assessment tool for those with Long Covid, My Long COVID Needs (this link will take you away from our website), through being a member of their Working Group;
• Lottery-funded workshops and research to build a pioneering services toolkit on Long Covid for other charities, healthcare providers, and organisations;
• A report produced for MPs of the UK All-Party Parliamentary Group on Universal Credit about the experiences of those with Long Covid;
• Collaborative partnerships with the likes of the NHS, Marie Curie, and British Lung Foundation

To access any of the above resources, please visit the covid:aid website (this link will take you away from our website).

All this would not have been possible without centring the core of the charity on its community, being fundamentally shaped by the voices of our members. We do not believe there should be an artificial divide between those providing and receiving support, as they can be the same people depending on the stage of their journeys – we have volunteers who first found help through the charity, as well those as involved with covid:aid who have required assistance after providing it to others.

The need for greater Long Covid awareness and support

As the landscape around COVID-19 changes, there is still a substantial lack of awareness around Long Covid, despite how many have felt its effects and been debilitated – more than 100,000 people in Scotland (this link will take you away from our website) and 1.3 million in the UK (this link will take you away from our website), according to the ONS.

There are still many people unable to live anything approaching their normal lives since contracting COVID-19 in the first wave almost two years ago, while we still regularly receive new members into our community who report of being disbelieved or dismissed by their GP. Meanwhile although we know of the sheer number who have experienced long-term symptoms, there is a distinct lack of information in daily updates to count and quantify Long Covid experiences across the UK – something which has been called for since 2020 by prominent advocates such as Dr Nisreen Alwan MBE (this link will take you away from our website).

As a small but growing charity, covid:aid has been able to provide support for those with Long Covid, but there is far more than can be done. The voices of patients must be heard, and integrated pathways found so that they can receive the right support across a range of symptoms – finding help and also knowing that their cases are being taken seriously. These effects are not just being felt by those with Long Covid, but also by family and friends, and by workplaces adjusting to absences.

We need the resources to both recognise and accommodate for the needs for these hidden hundreds of thousands in our society, and to provide the right support structures for the future as others – especially vulnerable groups – continue to contract Covid-19 and experience long-term symptoms. This is something that we can do together in partnership with healthcare providers, charities, and other organisations, with Long Covid patients at the core for the design and delivery of supportive services.

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