We’ve known for some time (both from statistical evidence and anecdotally) that volunteer recruitment is one of the biggest worries for local groups. The results of our Volunteer Survey in 2019 also reinforced this. Groups are struggling with recruiting new volunteers, and with diversifying their volunteer population in terms of age, gender and ethnic background.
Last year we renewed our commitment to equity, equality, diversity and inclusion, in recognition of the Black Lives Matter movement. As part of that commitment, we also marked UK Black History Month for the first time in its long and rich history. We know we’ve been slow to join the movement. But now we have, we’re committed to centring the experiences of our Black MS community within it.
Despite one in six people in the UK living with a neurological condition, neurology services are stretched, underfunded and overlooked. These services were neglected long before the pandemic – but now the situation is critical.
Our community have told us of difficulties in accessing MS and neurology services even before the COVID-19 pandemic. And that delays to appointments and waiting times for services have increased even more due to the effects of the pandemic.
We've heard feedback that you’d like more opportunities to talk about grants with other group volunteers. We know groups are in different positions with offering grants — some have been doing this for many years, while others are just starting. But whether you’re asking for advice or sharing your own experience, we want to support you to connect with each other.
So, we’re running Grants Get-togethers on Zoom, which are:
With things now feeling more ‘normal’ and the summer holiday season coming to an end, we’re seeing an increase in the number of groups now ready to restart some face-to-face activity. It’s great to know that some of our service users, many of whom have been physically isolated for so long, will be able to resume the social contact which means so much to them.
This also seems a good time for a reminder about the five-step process all groups need to follow before restarting any face-to-face activity:
"We Are Undefeatable" is a movement supporting people with a range of long-term health conditions, backed by expertise, insight and significant National Lottery funding from Sport England. It was launched in 2019 to inspire, reassure and support people to be active by showing people living with a variety of conditions – both visible and invisible – on their own journeys to being active. The movement was initially developed by the Richmond group. It is now been shared by many other charities.
Right now, thousands of people living with MS who experience muscle spasms are facing an unacceptable postcode lottery.
Sativex, a cannabis-based spray, was approved in England in 2019 to treat moderate to severe spasms when other treatments have not worked. Yet many people with MS are still being denied access. Our research shows Sativex is only funded by 49 out of 106 of England’s local health bodies.
If you’d like to find out more about what Local Action for MS is, the support, tools and resources you can access, and hear real stories from campaigners, we’d love to see you!
We began our Volunteer Voice sessions during the unsettling days of the first lockdown, so we could come together to share experiences and ideas on supporting our community and each other. We wanted to update you on how the organisation was responding to the challenges of the pandemic, hear your questions and concerns, and provide reassurance where we could. As 2020 progressed, and the sessions were well received, we settled into the current monthly schedule.
We’ve waited two years for the UK Government’s plans to improve disability benefits. And now is our opportunity to make sure the MS community is heard loud and clear, so the Government knows what they need to do to make benefits work for people with MS.
