The situation concerning coronavirus is rapidly changing and we know there are lots of questions from the muscle-wasting community that we are seeking answers to.
We want to keep you updated on what is happening at MDUK and how we are looking to support people affected by muscle-wasting conditions in the coming weeks.
Our absolute priority is to provide you with the latest accurate information and advice in line with government guidance and as the situation changes. Over the past few days, some of the announcements have sparked further questions that we will seek answers to and share with you as soon as possible.
We are working closely day-to-day with the leading muscle-wasting condition clinicians and experts who are helping us interpret and build-on official announcements. We are streamlining that process so that we can update our information faster and more regularly; but we are committed to only sharing accurate information and ensuring that clinicians have had a chance to validate our advice.
Our Helpline team is working tirelessly to provide you with the latest coronavirus advice. The line remains open and as soon as we have new information or greater clarity the team will be updated so they can share this with people who contact us.
We have temporarily taken our Information and Advocacy Officers out of the clinics: Oxford, Newcastle, GOSH, Scotland, Wales, Northern Ireland and we have also postponed our upcoming round of Muscle Groups. We are looking at how we can adjust our support services to fill the gaps that having to take this action leaves, and also what kind of support we can offer at this time.
Although our staff on the Helpline are not medically trained we’ve seen many people reaching out to us for advice on how to manage self-isolation and how to stay connected to people. We are exploring the possibility of setting up some virtual Muscle Groups, connect more people via our peer-support service and also provide useful webinars and other content. Any thoughts on what we could be doing around this – and offers to work with us to record and share some of your own experiences – are very welcome.
0800 652 6352 or email firstname.lastname@example.org
As we adjust to the large shifts in daily life, we are conscious that we need to ask questions and depending on the responses advocate strongly on behalf of people affected by muscle-wasting conditions to ensure that their needs are taken into account. Policies and practices are being adjusted across a wide range of areas and services in response to coronavirus, two examples are the reduction in face-to-face assessments by the DWP and concerns around the capacity of the carer and PA network to continue providing support to those who need it.
Providing support remotely
We are committed to ensuring that we are protecting the wellbeing of staff and volunteers based at Head Office in Southwark. Before the government announcement of 16 March encouraging people to work from home where possible we were already in the process of ensuring we could do that, and these plans have now accelerated. We are able to continue to provide all of our support remotely, but bear with us over the next few days as we fully switch to remote working.
Like all charities, the coronavirus is likely to affect our ability to generate income. Sadly we’ve already had to postpone several large fundraising events that we rely on for our annual income. If you donate to MDUK already thank you so much – your support is going to be crucial to ensure that we can continue to support people with muscle-wasting conditions.
If you are able to support our work please do contact us on: 0300 012 0172 or donate online; every penny you donate will help us to make every day count.