June is Pride month. As part of our celebrations, Aurora and Phoebe, two of the MS Trust team who identify as members of the LGBTQ+ community, sat down with David Martin, the MS Trust’s CEO, to discuss the importance of celebrating the LGBTQ+ community - not just in June but throughout the year.
Phoebe (she/her): David, why is it important for the MS Trust to celebrate Pride Month? And what are we doing to mark the occasion?
David (he/him): As I think you both know, as a charity, we're trying to do much more to become more inclusive. One of our core values at the Trust is to be there for everyone with MS. Not just people with a certain skin colour, sexual orientation or gender identity. By celebrating Pride month, we want to make it clear to all people with MS who are part of the LGBTQ+ community that we're here for them, and that the MS Trust is a safe place to discuss any concerns or issues about living with MS.
Beyond that we are also sharing useful and relevant resources for people living with MS. This includes personal stories and resources that have specific sections that are pertinent to people from the LGBTQ+ community, such as our Sex and MS books.
Finally, we're aware that it's not just about the month of June. We need to continue these communications right across the year, so that all members of the MS community feel that the MS Trust is a safe place for them whenever they want or need to get in touch with us.
Aurora (they/them): You mentioned some of the issues that LGBTQ+ people might have when accessing healthcare. Could you talk about that a little bit more?
David: There is a fear of discrimination which exists in healthcare. One in five LGBTQ+ people, including around 40% of bi men and about 29% of bi women aren't ‘out’ to any healthcare professional when seeking general medical care. That's a big number. This means that the specific medical needs of people living with MS may be overlooked, along with the opportunity to provide the right information and support. This is really worrying, so I would encourage people to have those meaningful conversations with their healthcare professional.
Phoebe: What is the MS Trust doing to ensure that the MS community as a whole, including anyone who identifies as a member of the LGBTQ+ community, feels heard?
David: One of the biggest things we've done over the last year is set up an Inclusion Panel, which might sound a bit woolly, but it is starting to make a real difference. The panel includes people with a link to MS, from a variety of different backgrounds, including people who identify as LGBTQ+. The group discusses an array of subjects and share their lived experiences to help the MS Trust shape our plans and approach to inclusivity. If there is anybody reading this who wants to get involved, they can get in touch at volunteer@mstrust.org.uk.
We also have a staff working group who look closely at equality, diversity and inclusion (EDI) across all areas of the charity to ensure that we continue to improve our reach to people living with MS in all parts of the community.
Aurora: What else would you like to see the MS Trust do more of in the coming year to support the LGBTQ+ community?
David: There’s still lots of things we can do. Initially I'd like people from the LGBTQ+ community to feel that the MS Trust is a safe place to come to for advice and information on issues relating to their MS.
I want to ensure that we continue to expand our presence within the LGBTQ+ community. This is so that we can guarantee that every person living with MS, who identifies as part of that community can take advantage of the support that we provide. That might not sound much, but I think it’s a big step forward.
Thirdly, we will continue working closely with members of the LGBTQ+ community through initiatives like our Inclusion Panel to ensure that everyone feels heard. If we can get that right, it will really help us to ensure that we're on the correct track.
And finally, I'd love to share more of the experiences of people living with MS in the LGBTQ+ community. These stories play a huge part in helping other people understand what life is like with MS. If you’d like to share your story you can email mystory@mstrust.org.uk.
Those are my thoughts but Aurora and Phoebe, what do you think? What should we be doing at the MS Trust to improve what we do in this space?
Phoebe: I think we've made such a good start for a small charity. The fact that we've already got an established EDI group shows we are taking steps in the right direction. We’ve also had training for all staff. Now, I think we need to take it upon ourselves to be really proactive in these areas to continue to help people with MS from marginalised backgrounds, whether that be the LGBTQ+ community, or any other marginalised communities.
It will be an exciting few years to watch the MS Trust develop as our information and our content is evaluated and updated.
Aurora: I’d like to see us continue taking these positive steps. We need to keep learning because we know you can't get everything right the first time.
I want to encourage the MS Trust to continue to view people in a more intersectional way, thinking of all the different layers of someone's identity so that you're not just a person with MS. No one is just a person with MS. Everybody is bringing their own stories and their own experiences and their own background with them. It’s important to recognise that some people have different barriers, making it more difficult to access support. I think as an organisation we're really starting to think about that.
I'm also really excited at the thought that we could get more stories from people from the LGBTQ+ community, and any other marginalised groups. It's very easy to accidentally support a society that leans towards white and straight people, but we need to continue to think about how we amplify the voices of people who aren't those things. I think there's so many lessons that we can learn if we just talk to one another and listen.
David: Thank you both, really helpful reflections. We know this is going to be a marathon rather than a sprint and we've got a long way to go but I wonder whether during Pride month next year, we can do this again and review how far the MS Trust has gone.
Phoebe: To finish, David, what would you say to anyone who is living with MS and identifies as a member of the LGBTQ+ community, but may feel they don't have a safe space to talk about their experiences or to find out more about the condition?
David: I would absolutely encourage them to contact our Helpline and Enquiry service. The number for that is 0800 032 3839, or they can email us at ask@mstrust.org.uk. They're super friendly and knowledgeable and the service is also confidential. We'll be more than happy to talk through any issues that may relate to their multiple sclerosis. We can also signpost them to relevant resources in their local area, which may provide other types of support.
Thank you to the two of you and the whole of the EDI group. You're doing some great work and I think we are changing the MS Trust forever. I want to thank you for your part in doing that.
Aurora: Thank you, for being so open and willing to come and have a chat with us today.
