Putting those with Long Covid at the core of building services to support them

Weeknote 1: In winning an innovative brief from Catalyst and the National Lottery to create a service design toolkit to help charities and other organisations support those with Long Covid, covid:aid and Hactar are running a series of workshops which in themselves are being designed for those with chronic illness and complex needs. Here’s our first update, about the preparations – and the considerations – taking place.

With recent research indicating that more than two million in England alone have suffered from Long Covid (symptoms as a result of Covid-19 persisting for more than 12 weeks), the work that covid:aid is doing in partnership with Hactar – building a set of personas and user needs statements which will help organisations develop and deliver services for those with the condition – has felt more important than ever. (Read the initial news announcement about the project here.)

The brief – from Catalyst and funded through the National Lottery – was already unique and innovative in not just looking for somebody who could build this, but using the project as a chance to connect together and train grassroots groups who have been providing support and mobilising to advocate for those with Long Covid. This is in itself why the opportunity appealed so much to covid:aid: - we launched in May 2021 to support not just those significantly affected by Covid-19, but to complement and boost existing organisations and groups who have been doing just that, providing a collaborative and holistic approach at a time when it is increasingly clear that the effects of Covid-19 will be here for years to come.

Central to that has been becoming qualified to deliver a ‘train the trainer’ workshop on how to build this toolkit, including understanding the concept of personas and user needs statements – and what they can achieve – as well as building versions of these. covid:aid had already started outreach to Long Covid groups, and so at the same time we began speaking to them about participating in these workshops. With these covid:aid and Hactar would not just deliver training but would – in between sessions – perform the user interviews and other work needed to actually create personas and user needs statements, then being able to present this to workshop participants so that together we can shape the resulting toolkit, while also meaning that participants can then augment this and build their own toolkits.

It was and is a great idea, and has been very exciting to get underway. We ran into a few challenges, but through finding solutions it already feels like this first-of-its-kind work can inspire and influence similar projects in future, so that they can also place ‘users’ at the centre of the service creation process – ensuring that they become empowered participants.

The first challenge was perhaps a minor one, and that was around the difficulty of describing what we were intending to do. Trying to explain that we were both building this toolkit and training participants to build their own made it more complicated to explain, especially as the concepts involved can be abstract to those initially unfamiliar with them. It took some time to figure out the right approach, but I found that making it as tangible as possible helped. Rather than getting into the weeds of what personas and user needs statements are – that’s what the workshops are for anyway – we could describe how a major charity, a local council, or a GP practice, etc, could want to build and/or tailor services to those with Long Covid but not have the knowledge or time to fully understand those with the condition, which is where the toolkit would be able to provide crucial guidance.

The second was the workshop setup. These were intended to be two three-hour sessions. However, after speaking to one group it became clear that these would likely be too lengthy for those with an exhaustive illness (fatigue being a primary Long Covid symptom). Therefore we altered the format into four 90-minute sessions, also introducing extra breaks and ensuring that we will also check in with participants to ensure that the pacing is appropriate.

The third was connected to this, and is rather unique to the timing. The workshops are set to begin in the summer holidays of 2021, which is the first chance many co-founders and members of Long Covid groups – which were often set up around the beginning of the pandemic in March and April 2020 – have had to have something approaching a proper holiday with their families, having been ill throughout the year before and with lockdown still in effect this Spring.

For reasons two and three we therefore settled on a hybrid format, recording workshop sessions so participants can watch and feedback over the following week. This means that if anyone is ill or away, then they can participate at a time of their choosing, and as well as training them up we still get the benefit of their experience. That is an undoubted win-win, and feels like this format could be used when designing services toolkits alongside others with chronic conditions.

I’m glad to say that following a lot of preparatory work we will now be beginning the workshops on Monday August 2, with major Long Covid groups involved. It feels like we have already learnt a lot through the process of getting these in place, so we are now even more excited for what we will additionally find out – and potentially adapt towards – over the course of the next month and a half, as we deliver a project which can better ensure that those with Long Covid not just receive the services they need, but can be at the participatory core of the process for creating these.

  • We will be providing regular updates at covidaidcharity.org on the workshops and our continuing work on this project

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