Why putting those with Long Covid at the heart of service delivery is so important for provision – and determining where awareness is needed

Weeknote 2: After 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 have begun a series of workshops – and, alongside grassroots groups, are already illustrating why involving potential service users from the very beginning will be so important.

With a great array of participants from prominent Long Covid grassroots groups confirmed – including those from LongCovidSOS, Long Covid Support, and Long Covid Kids – our workshops to develop an innovative toolkit to aid service provision got underway in August.

By producing a set of personas and user needs statements the aim was that we will help charities and other organisations to better understand those with Long Covid in order so that the support they need can be delivered.

Our first workshop looked to explain these concepts and how they could be employed. Though this was a necessary part of the process, when presenting these we became aware of the fact that their use could appear abstract, with the workshop itself feeling dry. The session itself started to spark into life when we began discussing more tangible aspects – such as what a persona for someone with Long Covid might look like.

It was with this in mind that in the second workshop we decided to focus much more on a collaborative process for building our toolkit of personas and user needs statements. One of the most striking aspects of Long Covid groups is how they have been redefining the traditional divide between service users and providers, and we wanted to ensure their involvement was as central as possible.

For that reason the second session came alive. Hosted by Gemma from Hactar, she prepared a Miro board for all participants to collaborate on. First we collectively determined a diverse array of user types, before sorting into groups and having a vote to determine prioritisation. Then we asked ‘what do they need?’ to begin building rounded personas and specific user needs statements.

There were powerful and unique insights throughout from the participants. In particular this included a discussion on which service providers could benefit the most from the toolkit – and through raised awareness of Long Covid. While some had positive experiences, others had experienced major difficulties with their GP which, as the ‘first hurdle’,  could have further negative consequences down the line, given the crucial importance of a correct diagnosis when it comes to processes such as claiming the Personal Independence Payment (PIP) benefit.

Now midway through the workshops, we will be conducting interviews and performing further work to validate and refine our toolkit. For covid:aid and Hactar we have already determined two key benefits from placing services users at the heart of this process. First it ensures that our toolkit will have a richness in detail, which would be difficult to achieve when those it is for sit outside of the creation process, and are treated merely as a user than as a participant, restricting collaborative discussions and allowing for the chance to fully open up about their experiences, behaviours, and needs.

Additionally, it provides a dignity for people whose lived experiences have often been ignored and dismissed. By empowering people with Long Covid so that they play a fundamental role in receiving the awareness and support they deserve, together we can all create a template for how those with chronic illness and other conditions should be treated when it comes to redressing the shortcomings in the treatment that they have received. Ideally our participants will help inspire similar work across the charity and healthcare sectors, while also building awareness about – and providing the first step in service delivery for – those with Long Covid.

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