Not the end, but a beginning in ensuring those with Long Covid are at the core of support service delivery

Weeknote 4: Winning a first-of-its-kind brief from Catalyst and the National Lottery, covid:aid and Hactar delivered the last of four workshop with Long Covid groups. Looking to deliver a toolkit which will help charities, healthcare providers, and other organisations deliver services for those with Long Covid, the journey – and discussions – went in ways we could never have anticipated.

Wednesday saw the last of our series of workshops intended to build a ‘toolkit’ which will aid those looking to provide services for people with Long Covid.

These involved participants from Long Covid groups such as Long Covid Support, LongCovidSOS, and Long Covid Kids, and without any doubt their willingness to get involved, massively shaped the results.

Indeed, they changed the whole course of the workshops themselves. We began with a dual purpose of both training these groups to produce the toolkit elements – personas and user needs statements – as well as creating a number of these ourselves. However, the initial structure of this was too dry and abstract, and through trying to do both it felt like we were achieving neither. Unfamiliar with the service design concepts of personas and user needs statements – like the vast majority of people – it was difficult to illustrate why it would be beneficial for the groups involved to be able to produce these themselves. 

As anybody who has paid attention knows, these groups as well as others have done a tremendous job since the first wave of the pandemic in advocating for those with Long Covid and providing crucial support. By creating awareness and working with medical professionals that they got onboard – with some of these medical professionals also living with Long Covid – they have achieved amazing things.

The potential for how much more can be achieved felt more tangible once we performed an about turn and largely disposed of the training plan, focussing instead on collaborative sessions in which we discussed what ‘service users’ with Long Covid could look like and what their needs were, then being able to form a much more tangible notion of how a toolkit containing these details could then inform the services needed to support those living with the long-term effects of Covid-19. This was in itself a substantial learning, as was how we changed the workshops to be more accommodating for those with Long Covid – splitting them into shorter sessions and including more breaks.

The final workshop was illustrative of the highly adaptive nature of what was eventually delivered. Early on we engaged in an important conversation over how the toolkit will be used, and concerns that groups and individuals with Long Covid may be placed to one side by existing charities, healthcare providers, and organisations (something some have already experienced), with the toolkit becoming a substitute for real-life engagement. Our solution is to ensure that what we deliver can itself voice the need to work directly with those who have Long Covid, and to do so in a manner which is similarly open and collaborative.

Outcomes are multiple. Thanks to our participants we will be able to feedback on how workshops like these for other conditions can be structured in future, something which can inform and inspire the wider charity sector. Through research interviews and workshop feedback we have a strong initial set of personas and user needs statements which can be added, reshaped, and remixed. And we are brimming with ideas over how we can better ensure that those with Long Covid receive improved support services. Rather than being the end of our project, this feels like an enormously promising beginning – one involving an innovative and crucial collaborative model for service design which can and must be adopted more widely.

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