Summer 2020 • Issue 135 Scott Mills lifts spirits with virtualquiz pub Inside Our Never Alone campaign How we’ve been reaching out to support you at home 1 Cover_MS Matters Summer 2020_MS Matters 1 09/07/2020 08:53 msmatters CONTENTS UK Issue 135 Summer 2020 Life with MS is unpredictable enough without all the uncertainties of the last few months. In this issue of MS Matters, we look at how – together – we’ve responded to coronavirus. As some of our staff were furloughed, and to save money on printing, we’ve combined MS Matters and Research Matters for this issue. We will bring out both magazines again in the autumn. We’re still committed to pushing forward vital MS research despite the effects of coronavirus (read more on page 16). We know MS can be isolating at the best of times and we did everything we could to make sure that although we were at home, no one was alone. We launched new online and telephone services (see page 12) and continued working hard to infl uence decision-makers across the UK on issues that have affected you during the pandemic (see page 11). To bring some light-hearted entertainment 18 Scott Mills introduces to the long weeks in lockdown DJ Scott Mills our exclusive quiz hosted a regular virtual pub quiz for us, which raised £55,000. In case you missed it, there’s an exclusive quiz from Scott for MS Matters readers on page 18. NEWS 18 COVER STORY: MS Matters I’ve been so impressed by the way the MS quiz with Scott Mills 7 Our pledge to being a more community has risen to the challenge. Local 21 Fampridine approved for equal organisation groups across the UK quickly got to grips with use in Scotland 8 MS Register builds a picture technology like Zoom to reach out to members of MS in the UK (see page 22). And on page 52, we look at how INSIGHT 11 Speaking up for people with you’ve adapted your fundraising activities to MS during lockdown 22 Local MS groups support the constraints of the lockdown. 12 New services help make sure members online Like many charities, coronavirus has had a you’re not alone 26 Let’s talk about sex negative impact on our fi nances. We do need 16 MS researchers adapt to hormones people to carry on supporting us through COVID-19 fundraising and donations. However, we also know that many of you will have been affected fi nancially and appreciate that now might be a diffi cult time. Make your donation go further At the beginning of July, as I write this, I know Did you know that giving direct from your salary is one of the easiest that some of you are likely to be shielding still and most tax-effi cient ways of donating to our work? Because your and may feel anxious about resuming daily donation is taken out of your wages before tax, if you donate £5 to life. Please keep an eye on mssociety.org.uk/ us, it actually only costs you £4, or even less if you’re a higher rate coronavirus-updates or call our MS Helpline on taxpayer. Find out more at mssociety.org.uk/payroll 0808 800 8000 for the latest information. Nick Moberly Chief Executive 4 MS Matters Summer 2020 04-05 Contents_MS Matters Summer 2020_MS Matters 4 09/07/2020 08:54 CONTENTS Research stories Find out how the MS Register is building a picture of life with MS (page 8), learn about sex hormones and MS (page 26) 4848 HowH our strategy t t can hlhelp everyone and discover the with an MS story latest research into stress and anxiety in MS (page 28). 52 Fundraising at home 51 Cake Break goes virtual Need support or information? Call our talk MS Helpline on 0808 800 8000 or email [email protected] Want to talk to other people with MS? Our online forum is a welcoming space for you to share experiences. Get to know your MS community and join the conversation. Visit community.mssociety.org.uk Got a question about membership? Need MS Matters on CD? Call our Supporter Care team on 0300 500 8084. 28 Ask the expert: your COMMUNITY VIEWS GET INVOLVED questions on stress and 36 You tell us how you’ve coped 51 Kadeena Cox and the anxiety answered with life during the lockdown Hairy Bikers get baking 31 Financial and emotional 39 Blog spotlight: invisible for Cake Break support in Manchester symptoms 52 Five ways you’ve adapted 57 Gardening with Tony 41 Exploring a virtual world to fundraising at home Johnstone 58 Creative corner: novelist 55 Lily’s My MS Walk Samantha Henthorn REAL LIFE 32 Real life stories: three people COMMUNITY NEWS talk about the difference 42 Membership: building a volunteers have made in stronger community their lives 45 Spotlight: Research Network 35 Colin Goodman on fi nding a volunteer and MS choir lifestyle that works for him 47 Meet MS Helpline nurse MS Matters is a Multiple Sclerosis Society publication ISSN 2517-6919. © Multiple Razia Khan Sclerosis Society 2019. Individuals or organisations wishing to reproduce, store in 48 How our strategy can help a retrieval system or transmit by electronic, mechanical, facsimile or other means any part of this publication should apply for permission to: MS Matters, MS Society, everyone with an MS story 372 Edgware Road, London NW2 6ND. Registered charity nos 1139257/SCO41990. Registered as a company in England and Wales 07451571. Acting Editor: Miriam Jones. Assistant Editor: Hannah Maunder. Research Editor: Katie Howe. Designed by Redactive Media Group. Cover image supplied by Scott Mills. Advertising sales: Redactive Media Group, 020 7880 7668. Printed in England by Warners Midlands plc. Articles signed by the authors represent their views rather than those of the MS Society. Mention or advertisement by the MS Society of products or services is not an endorsement by the MS Society, its offi cers or staff. mssociety.org.uk 5 04-05 Contents_MS Matters Summer 2020_MS Matters 5 09/07/2020 08:55 News Our renewed commitment to being a more equal organisation vents over the last few weeks put in place a dedicated talent programme following George Floyd’s tragic death to encourage the development of staff have affected many of us deeply to secure promotions, with a focus on – and have led us to refl ect on our those from backgrounds that are currently Epractices here at the MS Society. underrepresented. In response, we’ve spent time looking closely at our organisation and whether On the back of a research project we’re living up to our commitment to we commissioned last year into the having an equal, diverse and open culture. experiences of people with MS from diverse Some might say it isn’t our core purpose backgrounds, we’ll continue to work with to speak out on these issues, but we need BAME members of the MS community to acknowledge the impact racism has on to understand how we can make our people – including the MS community and organisation more welcoming and inclusive, our colleagues. and to work out whether new services are required to meet their specifi c needs. Our pledge We’re making a renewed commitment But we know this is not enough. We’ll that the MS Society will be a more equal continue to refl ect and discuss, and we are organisation and will better represent currently revising our Equality, Diversity and people from diverse communities across the Inclusion strategy. UK. We know we have a lot of work to do. To fi nd out more, please visit mssociety.org.uk/equality-commitment At leadership level we’re not diverse – we need to change that. We’ve recently We usually publish a selection of letters from introduced name blind recruitment MS Matters readers on this page. However, processes for all roles. We’re also engaging a in response to recent events, we wanted to specialist recruitment agency who will focus share our commitment to better represent on attracting applicants from Black, Asian people from diverse communities. and minority ethnic (BAME) backgrounds to Your letters will be back in the next issue of apply to become a Trustee of the MS Society. the magazine. We love to hear your feedback on the magazine and the articles you’ve read. We’ll increase our efforts to support and Do share your thoughts by writing to us at encourage BAME applicants to all senior [email protected] vacancies across the organisation. We’ll mssociety.org.uk 7 7 News_MS Matters Summer 2020_MS Matters 7 09/07/2020 08:55 news Building an accurate picture of MS in the UK ResearchResearch NetworkNet member and biomedical scientist Dr James Turton spoke to the UK MS Register’s Clinical Lead Professor Richard Nicholas about how data is helping build a picture of life with MS. iStock he MS Register was set up PhD on the genetics of Alzheimer’s to answer questions that I disease. As a scientist, I know am sure many of us with MS fi rst-hand that we need data to help have asked: What symptoms us answer big questions. This is where Tdo people with MS experience? What the MS Register comes into its own. are the differences in how MS affects I fi rst submitted my information to individuals? What treatments are the MS Register when it was set up people taking? And it’s also helping in 2011 and have a monthly reminder answer questions about coronavirus to update my data.