Here we reflect on some elements of organisational learning which we feel may be of interest beyond our own specialist field of work.

The Value of an Asset-based Approach
Asset-based Community Development is a concept most commonly associated with work in geographical communities, but we have found it equally applicable to our work with a specific community of interest. Although the initial driver for founding our charity in 2013 was people’s need for support related to a set of medical conditions, we quickly learned to use as our springboard the strengths and resources most immediately available to us: those with lived experience willing to share their stories and support others, and clinicians keen to both share and expand their expertise.

The Value of Changing Up at the Right Time
In our early years, we probably overachieved due to a highly committed and capable band of trustees and other volunteers, recruiting hundreds of members and delivering a substantial service resourced exclusively by our own voluntary time and direct fundraising. In 2017 we recognised that we had reached the limits of volunteer-based development, and our trustees shifted their focus away from operational demands to a process of strategic planning and organisational development. The transition took two years, but by the end of it we had stepped up from a £10k annual turnover to secure a £240k 3-year grant from the Big Lottery Reaching Communities Fund and employ paid staff. We probably could not have achieved this big step-up without the initial overachievement, but neither could we have continued much longer at our existing level without major trustee burnout.

The Value of Maintaining a Focus on Funding Diversity
Even though the Lottery award enabled us to see three years ahead, we continued to develop other sources of potential funding (in our case commercial organisations from the food, beverage and fragrance industries, gas industry and community fundraising activities), and this has helped us to plan ahead and maintain long-term sustainability in the face of fierce competition for public-sector and charitable trust funding.

The Value of Seeing Necessity as the Mother of Invention
Like many charities, we were forced by the Covid pandemic to change our plans for face-to-face activity. We used this as an opportunity not just to mark time but to strengthen our capacity to deliver support remotely through internet-based activities.

The Value of Using Evaluation as a Management Tool
Performance evaluation – measuring the effect of our work on the lives of our beneficiaries – was of course a requirement of our Lottery funding, but we also maintained a parallel focus on process evaluation – constantly asking ourselves (and our beneficiaries) if we were doing the right things in the right way to achieve optimum results. This led us, for example, to a clearer recognition of the diversity within our own target group (preferred learning style / level of engagement, different literacy levels, acquired versus congenital impairment experiences, attitude to self-management), and it enabled us to make valuable running adjustments to project design. We came to see interim evaluations as being at least as important as the final ones.