How is Covid 19 Affecting SMA UK Now?

18 November 2020

In June, we let you know that we were down to four staff responding to any support services and fundraising needs and that our other staff would gradually return to work on a part-time basis (we have 10.6 FTE staff in total). Now, almost six months on, though we still have a huge gap in our income due to the cancellation of so many fundraising events, thanks to your generosity, some successful grant applications and the furlough scheme, SMA UK is still here. Our fundraising staff are still flexibly furloughed and three of our support services team have slightly reduced hours due to the impact of covid on our income and because we can’t offer a home visiting service at the moment.

Over the summer, to help reduce costs, we moved to a ground floor office ‘across the road’ – half the size of where we were. Any old office furniture was moved along on eBay / Freecycle and staff families volunteered and moved everything across. Social distancing made it all quite a challenge! It’s all set up now but with the further lockdown and the need to protect staff, there are usually only one or two staff in the office at a time; most continue to work from home.

Our Outreach & Support Service remains very active and open to email and phone enquiries. We continue to keep the Community informed about what’s going on with developments in drug treatments and have been busy with submissions to regulatory authorities. Where there are access challenges, we continue working with the other patient groups, clinical community and NHS England to endeavour to address them. We continue to regularly update the advice, guidance and tips on our Covid support pages.

As we are sure you know there is little likelihood of our being able to offer face-to-face information support and social events for the foreseeable future so, with our brilliant panel of community representatives, we are continuing to develop what’s on offer via Community Connections and our virtual networks  - watch out for this here.

We have been very grateful to our Trustees for their support – particularly our Chair, Mark Dearlove. At the time of writing (before our 26th November AGM) we are still to find out if our Trustees Elect will be joining the board to add their ideas and energy as we continue to work on ‘where to next’.

All things considered, we feel fortunate to have weathered things thus far and thank you for your continued support. We hope, though, that this time next year we are all in a better space.

Christmas Closure Dates

The SMA UK office will be closed from Thursday 23rd December at 3.30pm and will re-open on Monday 4th 2021 at 9am. We will be posting further details soon about where you can access other support and information about SMA during this time.