Does your organisation support patients with genetic or rare conditions?
Covid-19 hit towards the end of an already tough year for Genetic Alliance UK. The first sign that our world was about to change, was a trickle of apologies from community members registered to attend our Rare Disease Day event in Holyrood at the beginning of March. We took the decision that our event should go ahead, but that as a precaution attendees should be asked not to greet one another by shaking hands. We did not know that this was to be one of our last physical events for some time and could not have imagined the scale of the changes that lay ahead.
The past three months have been the toughest time to work in the third sector that I have personally experienced since I joined it more than a decade ago. Covid-19 has had a serious chilling effect on our finances and we are having to do more now with fewer resources.
An early indication of the scale of the financial challenge came when, with the majority of activities cancelled, the lion’s share of planned-for community fundraised income associated with our awareness days failed to materialise. It seems likely that we will continue to feel the financial impacts of the pandemic for the remainder of the year and perhaps for very much longer than that.
Shortly after the Holyrood reception, we locked the door of our London office for what proved to be the final time. We decided, two weeks before the Government enacted lockdown measures, to move to remote working in order to protect the health and wellbeing of our staff and the people with whom they share their homes. Serendipitously, our office lease expired at the end of April, and, having moved our office equipment into storage, we are assessing on a monthly basis when we will be able to return to having an office again.
At the beginning of April, with many of our projects temporarily on hold and working to adapt to virtual delivery, we took the difficult decision to furlough six members of our staff. We have since undertaken a thorough financial review and are currently working to redevelop our operating model and fundraising strategy. It was clear that without such remedial action, our organisation would not be sustainable and that after 30 years, everything we have achieved might be all too easily lost.
In the workplace, the pandemic has placed a strain on many people’s mental health and wellbeing. This holds true for those of us who have continued to work from home under greater pressure than normal and also for those staff members furloughed, who may be anxious about the future and worry about the colleagues and community from which they are separated.
This is our experience of Covid-19. We know that our members are facing challenges of their own that are driven by increased demand for services in the face of declining resources. Most charities in our community do not sit on huge reserves. Most are without statutory funding of any kind, and are reliant on community fundraising, corporate or private donations or grant income – all look likely to be hit. Weathering this storm will not be easy.
We want to be able to advocate on behalf of our members on this crucial topic. We will have to campaign for specific support to make sure our sector of rare and genetic condition charities can stay afloat. To make sure that we have a strong case we need the evidence to show the impact that Covid-19 has had.
We have launched a CEO survey to gather evidence about the impact of the pandemic on our member organisations. Data will be aggregated. Your responses will be confidential and no comment will be used without explicit permission which we would request in advance.