November 2013 Open door by MS Trust

Quarterly newsletter of the MS Trust

Open Door November 2013

MS in the family Stories, tips and resources to help parents, partners and children

Also in this issue New research into secondary progressive MS

Treatment options: who decides?

How are new drugs approved?

15 minutes with sex and disability adviser Alex Cowan

In the darkest days of my first relapses I could see no way forward. The support of the MS Trust was invaluable.

That’s why I want to give something back. – STEVE, MS TRUST SUPPORTER

Sometimes it’s the little things that can make the biggest impact. My MS means that I can only use one of my fingers to type. Thanks to free information I received from the MS Trust I found out how I could continue to use my computer. By using my computer I’ve stayed in touch with old friends. And by going on the internet I’ve been able to pass on some words of wisdom to help people who’ve just been diagnosed. The MS Trust is a small organisation that makes a big difference. Thanks to their free, practical information, people like me are able to continue to live well, despite our MS. That’s why I’ve pledged to leave the MS Trust a gift in my will. It was quick and easy and it could make a life-changing difference to any one of the 3,000 people who are diagnosed with MS every year. If you’d like to join me in giving something back, why not give the MS Trust a call on 01462 476700? They can talk you through the process, give you information about how you draw up a will, and help you find a solicitor. Your gift, no matter how small, could make a huge difference.

Together we can make sure that no one has to deal with MS alone. For more details visit mstrust.org.uk/legacy

Welcome to the November issue of Open Door Here at the MS Trust we’ve just returned from our annual conference. This is the one time of the year when the ‘MS family’ of healthcare professionals – nurses, therapists, care workers and neurologists – can get together to find out about the latest developments in research and clinical practice and discuss how everyone can work together to make a difference for people with MS. At this year’s conference we launched new resources for people with MS: the revised edition of MS Explained and our new guides to managing bowel and bladder problems. To order your copies see the form on page 23. This year’s conference ended with a talk on relationships and MS by Alex Cowan. Alex talks about her new book on sex and disability on page 22. This issue of Open Door focuses on how MS affects not only people with MS themselves but their partners, children and parents. We talked to a range of family members to find out what they found challenging and what they found helpful. We hope you find their stories interesting and would love to hear your thoughts. Send an email to opendoor@mstrust.org.uk or give us a call on 01462 476700. While we’re talking about relations we should mention this year’s MS Trust Christmas Cards: an ideal way to send season’s greetings to your nearest and dearest, and a great way to help raise vital funds for our work supporting everyone affected by MS. To order yours see the flyer included in this mailing or visit mstrust.org.uk/christmas There is also still time to take part in this year’s Santa Run in Victoria Park, London on 8 December. This is a fully accessible family event, every participant receives a full Santa suit and this year we are one of the official charities! For full details see mstrust.org.uk/santarun

Contents 4 News News on new research, drug appraisals and MS statistics, plus our work supporting MS nurses

8 Research update New research on how many people progress from clinically isolated syndrome, plus new ways of communicating treatment preferences

10 MS in the family Family resources from the MS Trust 12 Emma, Mark and Sandra Shavick explain how they responded to MS in the family 14 Two mothers talk about how they adjusted to their son and daughter developing MS 15 Two husbands of women with MS explain how a men’s support group helped them

16 Knowledge is power MS specialist nurse Nikki Embrey introduces practical tips to help you understand what affects your MS and how

18 Improving access to new treatments Janice from our Information Team explains how the MS Trust works to ensure people with MS can access the best treatment for them

20 Get involved Olly Keith explains why she took part in the MS Trust’s Monster Ski experience 21 How could you get involved in helping support everyone living with MS?

Best wishes Pam Macfarlane Chief Executive, MS Trust

22 15 minutes with Alex Cowan

PS: If you are moving house please don’t forget to let us know. This will save us the cost of paying redirection fees! Email info@mstrust.org.uk or call 01462 476700 with your new details.

The campaigner and sex and disability adviser answers a few of our questions

Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353

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News Sign up for our weekly news alerts mstrust.org.uk/newsalerts For full references for all news stories see mstrust.org.uk/information/news

MS Trust commissions new research in secondary progressive MS The MS Trust is providing £50,000 to a study that will explore the transition from relapsing remitting MS (RRMS) to secondary progressive MS (SPMS), an area about which there is relatively little research. The work will be carried out by a team from the Cochrane Institute at Cardiff University. The project will run through 2014, with researchers conducting and analysing detailed interviews with people with MS and health professionals. The results will be published in 2015 and will lead to the development

of support programmes to help people with SPMS work together with their carers and health professionals to develop effective ways of managing their health. “By funding this research the MS Trust is reaffirming its commitment to making sure that people living with progressive forms of MS are able to attain the best possible quality of life and receive high quality care,” said Amy Bowen, our Director of Services. Read more about the project at mstrust.org.uk/spms

MS Trust conference 2013 The MS Trust conference, which took place from 3–5 November, was our biggest and most successful yet. The conference is the UK’s largest annual meeting for health and social care professionals working with people with MS. Over 70 per cent of the UK’s MS specialist nurses were in attendance, along with a range of allied health professionals, many at the conference for

the first time. They were able to share experience and ideas and attend lectures and seminars on innovation and best practice from some of the key names in MS management. We hope the experience helps them to deliver even better services for people with MS. For a report on the conference see mstrust.org. uk/conference2013

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How many people have MS? A new study estimates that there are about 127,000 people with MS in the UK – an increase of over 25 per cent on previous estimates. According to researchers at the University of Dundee, the number of people living with MS increased by 2.4 per cent between 1990 and 2010, though the numbers being diagnosed each year fell. The increase is thought to be due to people living longer, with mortality rates falling by 3 per cent during the study. This study follows data in the new edition of the Atlas of MS (atlasofms.org), recently published by the Multiple Sclerosis International Federation, which suggests an increase of 10 per cent, to 2.3 million, in people with MS around the world. The University of Dundee study used data from the General Practice Research Database (GPRD), which holds anonymised records from around 400 GP practices across the country. This database has been used by previous studies and produced different results. In 2009 the London School of Hygiene and Tropical Medicine estimated that there may be around 100,000 people with MS in the UK. In 2007 research that looked at records from the period 1993-2000 suggested an incidence rate that equates to about 3,000 new diagnoses each year. The Dundee study reports 6,000 in 2010. The differing figures from these studies illustrates the difficulty of estimating the number of people living with MS.

NICE says no to teriflunomide (Aubagio) but Europe says yes to alemtuzumab (Lemtrada) In September NICE (National Institute for Health and Care Excellence) announced that it was “minded not to recommend teriflunomide” as a treatment for relapsing remitting MS. NICE asked the manufacturer (Genzyme) to provide more detailed information of the cost effectiveness of the treatment. Teriflunomide was licensed by the European Commission earlier in September and has been available in the US since the end of 2012. In clinical trials, teriflunomide, which is taken as a tablet, was shown to reduce the number of relapses experienced by about a third, which is similar to the effect seen with the beta interferon drugs (Avonex, Betaferon, Extavia, Rebif) and glatiramer acetate (Copaxone). NICE published its decision as a consultation document and met to consider responses and the manufacturer’s extra data at the end of October. A final decision is expected in January 2014. Amy Bowen, Director of Service Development at the MS Trust, said “Teriflunomide will expand the range of treatments available to people with relapsing remitting MS. We remain hopeful that NICE will reconsider its draft guidance.”

Alemtuzumab (Lemtrada) granted European licence Meanwhile, alemtuzumab (Lemtrada) has been approved by the European Commission as a treatment for adults with active relapsing remitting MS, defined by clinical or MRI features. The drug, which was previously known as Campath, is taken as a course of intravenous infusions. The first treatment is taken over five consecutive days and the second course is taken on three consecutive days, one year later. In most people, no further treatment is necessary. In clinical trials, people taking alemtuzumab had about half as many relapses as people taking interferon beta 1a (Rebif). One in five people developed overactive thyroid gland (Graves disease) or abnormal thyroid function. A disorder that prevents blood from clotting – idiopathic thrombocytopenic purpura (ITP) – affected between 1 and 3 in 100 people.

NICE to appraise alemtuzumab NICE has begun its appraisal of alemtuzumab with a decision expected in April 2014 on whether it should be funded by the NHS in England and Wales. The Scottish Medicines Consortium is also due to consider alemtuzumab. Two other drugs, dimethyl fumarate or BG-12 (Tecfidera) and laquinimod are also being considered for a licence by the European Medicines Agency. For more on how the MS Trust is actively involved in the NICE appraisal of new drugs, see page 18.

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News Sign up for our weekly news alerts mstrust.org.uk/newsalerts For full references for all news stories see mstrust.org.uk/information/news

How the MS Trust is helping safeguard specialist MS services Over the past few months the MS Trust has been approached by a number of MS specialist nurses whose services are under threat due to costcutting measures in the NHS. The threats include downgrading of posts, cuts to the number of nurses in the team and the withdrawal of funding for the MS service. We recently worked with a team under threat at one of the largest MS centres in the UK. Using the tools we have developed in our MS nurse support programme, GEMSS (Generating Evidence in MS Services), we helped them present the strongest case possible to their managers and commissioners. We are delighted to hear that their challenge was successful and the threat was withdrawn. This means that their MS specialist nurse posts are secure and people with MS will continue to receive the service they need. “The support and impact of the MS Trust can’t be exaggerated,” said one of the nurses we worked with. “My MS team are forever grateful.” We’re just about to embark on phase two of GEMSS.

This winter we’re recruiting ten more teams around the country, with a particular focus on multi-disciplinary teams; that is, services which comprise physios and occupational therapists, as well as MS specialist nurses. We’ll be building on the successes of the last year, and working more on the practical difference MS teams can make to individuals, developing case study and report writing skills. We’ll also be focusing on how MS nurses can save the NHS money by helping people with MS manage their health so that they require fewer hospital visits. With all these tools we believe MS teams will be able to make the most powerful case possible about the importance of their work, and hopefully safeguard more services for everyone affected by MS. You can get involved: we’ve developed a survey for people with MS, and we’re now offering it to every MS team in the UK. So if you receive a survey from your local MS team, do fill it in! Find out more: mstrust.org.uk/gemss

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MS Trust publishes new guides to help manage bowel and bladder problems The MS Trust is delighted to be publishing two new books: Managing your bladder: a guide for people with MS and Managing your bowels: a guide for people with MS. These books aim to give an insight into why bladder and bowel problems can be part of MS, and provide a practical approach to help people with MS successfully manage their bladder or bowel problems. They explore: • how to monitor symptoms and recognise factors that might make them worse • simple strategies that can improve bladder and bowel problems • treatment options that might be relevant • how working in partnership with the appropriate health professionals can be the key to finding the approach that works best Both books include comments and tips from people with MS who know what it’s like to live with bladder and bowel problems and they also draw on the experience of health professionals including MS specialist nurses and continence advisors. Like all our publications, the bowel and bladder guides are free. To order your copies see page 23 or visit mstrust.org.uk/pubs

Getting ready for winter Flu vaccinations The NHS is advising people with MS to get the annual flu jab. The effects of flu can be a greater problem for people with MS. As well as the unpleasant symptoms caused by the infection itself, it can also lead to a worsening of MS symptoms. People with MS are therefore included as one of the priority groups to receive the vaccination. To arrange for your free vaccination contact your GP or practice nurse. People who are the main carer for someone with a disability are also being advised to get vaccinated. For more information about the seasonal flu vaccination, contact your GP or visit mstrust.org.uk/flu Keeping warm The Department of Health’s leaflet Keep Warm Keep Well contains information on remaining healthy and heating your home effectively and safely. There is also information on finding help with heating costs for older people and those with a low income. Download the Keep Warm Keep Well leaflet at tinyurl.com/keepwarm13 and see gov.uk/energygrants-calculator for upto-date information about help with heating costs. The Energy Saving Trust also has information on heating your home efficiently: energysavingtrust.org.uk or ring 0300 123 1234

To share or not to share? Alice, the MS Trust’s Policy Officer, looks into how the NHS plans to share information Successive governments have dithered over how to balance individual privacy with sharing health information, one of the many reasons why digital health records haven’t taken off in England. Some years ago, Dame Fiona Caldicott developed some principles of information governance. These were used within the NHS and social care as though confidentiality is paramount, thus ensuring that information isn’t shared between health and social care on discharge from hospital, for example. Last year the Department of Health asked her to review information governance with a view to improving data sharing among organisations. The revised Caldicott principles of information governance were published this April, and recently accepted in full. Underlying them is a presumption that data should be shared where this will improve patient care, given that there are adequate safeguards in place. A lot of the report is concerned with establishing these safeguards. It’s not clear what this will mean in practice, and the new approach to data sharing will take time to come into use in the NHS in England. My hope

is that in a couple of years’ time, people with MS will spend less of their life repeating their medical history to every professional they meet. The revised Caldicott principles are: 1 Justify the purpose: spell out why data is being transferred 2 Don’t use personal confidential data unless it is absolutely necessary 3 Use the minimum necessary personal confidential data: only parts of your record need be accessible to different parts of the system 4 Access to personal confidential data should be on a strict need-toknow basis 5 Everyone with access to personal confidential data should be aware of their responsibilities 6 Comply with the law 7 The duty to share information can be as important as the duty to protect patient confidentiality, for instance in cases of actual or suspected abuse You can access the full report by searching for “caldicott review” at gov.uk

To find out more about how the MS Trust is working to improve services for people with MS visit mstrust.org.uk/action-for-ms

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Research update

How many people with clinically isolated syndrome never progress to MS? Clinically isolated syndrome (CIS) is an individual’s first episode of neurological symptoms. Waiting to see if more symptoms follow, and it is officially diagnosed as MS, is often described as like being in limbo. This research looked at the chances of never progressing to MS Novakova L, et al Clinically isolated syndromes with no further disease activity suggestive of multiple sclerosis at the age of population life expectancy Multiple Sclerosis. 2013 Jul 18

People whose first attack was either optic neuritis or sensory and optic symptoms were more likely to remain ‘CIS only’ (30 per cent and 28 per cent respectively) as compared with 13 per cent of those with other symptoms.

[Epub ahead of print]

50 years in the making 246 people diagnosed with CIS in Sweden between 1950 and 1964 were followed for up to 57 years. Participants in the study were diagnosed between the ages of 10 and 56 then examined another three times over the following 25 years. In 2002/2003, 41 of the group still showed no further evidence of MSlike disease and were classified as ‘CIS only’. The final exam By 2011, 27 of the ‘CIS only’ group had died due to causes unrelated to MS, and three were not included as they had suffered a stroke. The remaining 11 members ranged in age from 67 to 90 and it was between 49 and 57 years since their diagnosis with CIS. Three of the ‘CIS only’ group were interviewed by phone and eight were seen in a clinic. They had minimal disability as judged by their EDSS score, a commonly used measure of quantifying disability in MS, which ranged from zero to two (see the box). There were no differences in cognitive performance compared with healthy controls of the same age group and no evidence of daytime sleepiness, fatigue or depression.

The bottom line In summary, almost one in five (18 per cent) of the study group remained ‘CIS only’ after 25 years. The last person to make the transition to clinically definite MS did so 24 years after their first attack suggesting that if someone had not converted from CIS to clinically definite MS after 25 years, there was almost no risk that they would convert at a later date.

EDSS The Expanded Disability Status Scale (EDSS) is a way to quantify disability in MS. Eight functional systems are assessed including vision, bowel, bladder and cerebral (mental) functions. The scale goes from one to ten in steps of half a point. In this study, the EDSS score of participants ranged from 0–2. Score Description 0.0 Normal 1.0 No disability, minimal signs in one functional system 1.5 No disability, minimal signs in more than one functional system 2.0 Minimal disability in one functional system

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Options for your treatment: who makes the decisions? More and more people are becoming actively involved in deciding which treatment option will be best for them.This research looked at whether electronic cards could help people communicate their preferences quickly and effectively

Solari A, et al. Role preferences of people with multiple sclerosis: image-revised, computerized self-administered version of the control preference scale. PLoS One. 2013;8(6):e66127.

Making decisions together Shared decision making is when you work together with a health professional to decide on a course of treatment. Some people like to be more active in decision making than others. Also, some people may feel able to take a lead on some decisions but not on others. For a health professional, it can be difficult to judge how active a role someone would like to take and, therefore, how to pitch the discussion. Development of an electronic system The most frequently used way of measuring how much someone likes to be involved in decision making is the Control Preference Scale (CPS), which is delivered face to face. However there is not always time during an appointment to go though it. This research adapted the CPS into electronic ‘cards’ which the person could complete themselves and included new cartoons which might help.

The options on the cards: 1. I prefer to make the final selection about which treatment I will receive 2. I prefer to make the final selection of my treatment after seriously considering my doctor’s opinion 3. I prefer that my doctor and I share responsibility for deciding which treatment is best for me 4. I prefer that my doctor makes the final decision about which treatment will be used, but seriously considers my opinion 5. I prefer to leave all decisions regarding my treatment to my doctor. Testing A pilot test was completed by 26 people with MS. In addition, the new electronic version was tested against the old version in 92 people who received both versions in random order. The researchers found that the new electronic ‘cards’, containing the cartoons, were well accepted and easy to understand. People reported that they took the text into account more than the cartoons. The new version of the test seemed to be as reliable as the older, face-to-face version. .

Making the decision that’s best for you A health professional may be an expert on MS but someone with MS is the expert on their own condition and how it affects their life. When making any decision, it is important to have reliable information and good support. You will probably want to weigh up the benefits and risks of treatment, and any effect on lifestyle such as when, how, how often and for how long a treatment would be taken. There was an NHS campaign in 2012 which recommended three questions to ask health professionals to help you make choices and give you more say in your own healthcare: 1. What are my options? 2. What are the pros and cons of each option? 3. How do I get support to help me make a decision that is right for me?

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MS in the family MS affects the whole family but it can sometimes be difficult to discuss the changes that MS brings with parents, partners and children. Each family is unique and each person’s experience of MS is different, so there is no right or wrong way to talk about it, and no ideal time. But if family members understand MS and know how they can best help, it can make a vital difference in living well. On the following pages we hear from parents, partners and children of people with MS about their experiences. On this page we introduce a few of our information resources designed to help you and help your family.

Talking with your kids about MS. Deciding how and when to discuss your MS with your children can be complex. Written in collaboration with a psychologist, this book sets out some of the things you might want to consider before opening the conversation. It highlights the questions most frequently asked by children and shares the thoughts and experiences of parents who have already told their children.

The Young Person’s Guide to MS answers some of the questions 10–16 year olds may have about MS and looks at how MS might affect the family. With the help of an MS nurse, a group of young people take us through the questions they want to ask about their parent’s MS. Through their personal experiences, the book explores the emotional and practical impact MS might have on their lives and offers support and suggestions of how to cope.

The Kids’ Guide to MS is aimed at 6–10 year olds who have a mum or dad with MS. It deals with some of the day-to-day queries younger children have about MS in a fun and friendly manner. The cheeky cartoon guides Myles and Neuro explain what MS is, how it can affect a parent and answer some of the questions children often don’t like to ask. It even has tips on how a child can get an idea of what some of the symptoms feel like, to help them better understand their parent’s MS.

To order any of these free publications see p23 or visit mstrust.org.uk/pubs

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MS in the family: what are the risks? MS is commonly diagnosed in people in their twenties and thirties, when many are thinking about starting a family. Someone with MS might be understandably concerned about the chances of MS developing in other family members, including children. It’s important to state that MS is not hereditary. The majority of people who develop MS have no previous family history of the condition. However, having a relative with MS increases the risk of developing MS. In the UK the lifetime risk of developing MS is about 1 in 330. Studies have shown that for first degree relatives (that is parents, children and brothers or sisters) of someone with MS the risk is about 1 in 40. For second degree relatives (grandparents, cousins, aunts/uncles, nephews/nieces) it is around 1 in 100. These statistics might seem worrying but it’s worth comparing the number of people in the UK with MS with the number of people with other conditions: • 1 in 33 people have diabetes • 1 in 500 people have Parkinson’s disease • 1 in 700 people have MS Although the rate of MS within families indicates that there is a genetic factor, studies of identical twins show that genes are not the whole story. Identical twins have exactly the same genetic make up. If MS were solely dependent on genes, you would expect that both twins developed the condition. However, studies have shown that the actual risk of the identical twin of someone with MS developing the condition themselves is about one in four. Researchers believe there might be a hundred or more genes that contribute to the risk of developing MS. On its own, each gene raises the MS risk negligibly. However, if someone has enough of these genes, the combined effect will make them more susceptible to MS. But genes alone don’t cause the condition. Recent research suggested that genes contribute just over half of the risk factors, but an unknown combination of other external factors is also involved. When people with a particular genetic make-up are exposed to a trigger, their body reacts in a way that starts the development of MS, although it may be

years before any symptoms become apparent. Many people believe that possible triggers may include an infection of some sort, or lack of vitamin D.

What can reduce the risk of someone developing MS? Vitamin D A number of studies have drawn a connection between vitamin D levels in mothers and the subsequent risk of their children developing MS. More people with MS are born in spring than autumn, which suggests that mothers getting less sunshine in the middle of pregnancy results in lower vitamin D levels, which in some way increases the risk of developing MS later in life for children who are genetically susceptible. Though there are many studies in progress, the exact role of vitamin D in MS is still not clearly understood. The Department of Health advises that most people should be able to get all the vitamin D they need from their diet and by getting a little sun. A daily 400 IU (10 micrograms) vitamin D supplement is recommended for pregnant and breastfeeding women. However, some MS neurologists are now recommending that people with MS and their family members take as much as 4000–5000 IU vitamin D per day. Smoking There is increasing evidence that smoking is a significant risk factor in MS. There is also evidence that second-hand smoke can increase the chance of children later developing MS. Studies suggest that stopping smoking reduces the risk of quicker progression of MS. For factsheets on vitamin D and pregnancy and our newly revised book MS Explained see p23 or visit mstrust.org.uk/pubs

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Family ties Six years ago Emma Shavick was an A level student designing equipment to help her dad live with his MS. Today she’s an engineer for Proctor & Gamble and is preparing to run the Virgin Money London Marathon for the MS Trust. Here Emma, her dad Mark and her gran Sandra explain how family support can make all the difference in living well with MS If you’ve been reading Open Door for a while you may remember a feature from 2007 titled ‘A design for my dad’. In the article Emma Shavick, a student from north London explained how, as part of her coursework for her A-level in Design Technology, she designed a leg-lifter stool to help her dad, Mark, who has MS. The stool enabled Mark to put on, remove and store his functional electrical stimulator walking aid. Emma subsequently went on to study at Bath University and now works as an engineer at Proctor & Gamble. But her relationship with the MS Trust hasn’t ended. Earlier this year she and her friend Melisa raised over £700 by taking part in the British 10k run. And we’re pleased to announce that she’s going to be running the Virgin Money London Marathon as part of the MS Trust team next April. “It’s a bit daunting,” says Emma. “I’ve run a half marathon before and that was ok, but since I’ve started working I’ve got out of the habit of going to the gym. The training will have to start now!”. Though she now lives in Essex, Emma still regularly visits her dad in north London. And Emma’s gran, and Mark’s mum, Sandra lives nearby. Open Door caught up with them one sunny afternoon to discuss how MS affects the family. “I’m not sure when I first realised my dad had MS,” says Emma. “I think it might have been around the eclipse in 1999. I remember everyone

running up and downstairs, trying to get a better view, and noticing that my dad wasn’t moving as easily as usual.” “I had balance problems for a while,” remembers Mark. “I was falling over a lot. I wouldn’t say it was a relief to be diagnosed, but at least we had a name for what was happening to me. I didn’t start taking any treatments or therapies, but I did start to try and eat more healthily. I didn’t follow any particular diet, but I tried to cut out certain things…” “It wasn’t just you – nobody in the house could eat any dairy or gluten!” remembers Emma.

Emma and her friend Melisa boosted their fundraising for the British 10K London Run by holding a cake sale

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Sandra, Emma and Mark at Emma’s university graduation ceremony in 2012 “I’m not sure I ever did sit down with everyone to explain that I had been diagnosed with MS, and what it was” says Mark. “It was just something that was always there when we were growing up,” says Emma. I didn’t know that much about MS in itself but I knew that there was a problem and there were things I could do to help my dad.” “Mark did have an MS nurse but I don’t think I’ve ever spoken to them,” says Sandra. “But I knew someone who had MS so I did know a little bit about the condition. And I would read Open Door and so you pick things up from there.” “What would I say was the hardest thing about adjusting to MS? I’m not sure if anything has been that hard,” says Mark. “I’ve been very lucky to have had the support of my family. My flat was specifically designed to be wheelchair friendly. And I have a carer who comes round most days who helps me with a lot of practical things.” Before he retired, Mark worked as an entrepreneur, with his own company creating scientific instrumentation and test kits. Though he’s no longer actively involved in the business he still has a financial interest in the company. “When I was down in the lab at work all the thermometers were made by your company!” says Emma, proudly. These days Mark spends

a lot of time online. “I don’t need any specific adaptations to my computer, and the internet allows me to keep in touch with people. Recently I’ve joined some dating sites. Even though my family are very supportive I find I do miss company.” Before she retired Sandra was a professional counsellor and is clear about the benefits of talking things through. “If I were to give one piece of advice to a family where someone has just been diagnosed with MS it would be to try family counselling, if it’s at all possible. Just getting things out in the open and talking about your feelings can be so important, so everybody’s clear about what’s going on.” To find out more about counselling visit mstrust.org.uk/atoz/counselling.jsp To support Emma in next year’s Virgin Money London Marathon visit uk.virginmoneygiving.com/emmashavick If you would like to run a marathon to support the work of the MS Trust, the Brighton Marathon takes place on 6 April 2014 and we still have places available. Visit mstrust.org.uk/brightonmarathon to find out more.

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“We needed stories of positivity, stories of people who were proactive...” We receive many calls and enquiries from parents concerned about their son or daughter who has MS and wondering about the best way to help. Below, two mothers share their experiences My daughter was diagnosed at 15 after an episode of optic neuritis. I was totally stunned at first. It sounds very dramatic but it felt like my child been handed a death sentence. The way it was put to us by a morose doctor was that it was an illness that was progressive and there was no cure. To this day I will never forget him or his attitude. The first place we went to online was an MS forum, but to be honest it was full of doom and gloom. At that time it was not what we needed as a family. We needed positivity and stories of people who were proactive and fighting every step of the way. Back then there were few resources for young people with MS but thankfully that is changing with social media and the internet. I admit it sank me into depression for about a year, although, funnily enough, my daughter seemed to cope admirably and didn’t let it interfere in school or social activities. Over time it became part of our lives. My daughter left school and now works in a childcare centre. She has her own flat and a boyfriend. She is a skier and walks three miles to work and back every day. As a parent you always worry about your kids, but I think time and experience have taught us that it’s pointless to worry about the future and much more positive to live life to the full on a daily basis. My biggest influence was a lady named Jane who was a fitness instructor at my gym. She ran five miles a day and led exercise classes where you were lucky to be able to breathe afterwards! I was telling her about my daughter one day and she told me she’d had MS for five years and was determined it wouldn’t beat her. I think my whole attitude changed that day. She was the positive role model I’d been looking for.

My son was diagnosed nearly three years ago. We’re still a bit topsy turvy, but we’re getting on a more even keel. I first noticed on holiday about a year before the diagnosis. We were playing tennis – my son was a pretty good tennis player but he was missing the ball. He’d say it was the sun but it seemed like his hand/ eye co-ordination was out. He went to the doctor with vague symptoms – but often GPs don’t seem to know very much about MS. I think it’s important to raise awareness so we can spot these things sooner. But he got to the stage where he had to have an MRI. And it turned “Time and out he had highly active MS. experience have At that time he had severe taught us that it’s vertigo and he couldn’t lift his head. pointless to worry I was in shock. I was very concerned about the future and for the future. As a mother you much more positive have all these feelings: sadness, to live life to the full disappointment, guilt . . . on a daily basis.” It’s important to try and be positive and do practical things to help them. Finding the right words can be hard. I can’t come in and say “how are you?” But you don’t want me to come in and say nothing. I wish I had read more about the psychological issues around it all. We rely on the MS Trust for giving us information and we read Open Door cover to cover. And the support of our MS nurse is invaluable. When you go to the hospital you feel as though someone’s on your side. It spurs you on to carry on. They’re worth their weight in gold. They better not take them away! Now we try and get involved whenever we can: my son’s wife ran the London Marathon for the MS Trust in 2012 and altogether we raised £12,000. It’s not something you can do every day, but it’s nice to help in some way. After some difficult times we as a family have all come to terms with MS and our son is doing really well at the moment.

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“If one person in a relationship has MS you both deal with the effects...” In 2007 Caroline Birch was working as an occupational therapist running a fatigue management class for people with MS. She often heard women in the class talking about how little their husbands and partners understood MS, but found herself wondering who was listening to the men. In 2009 she started a pilot group for husbands of women with MS. It proved so popular she now runs monthly groups in Southampton, Portsmouth and Basingstoke. Here a couple of group members share their experiences The empathy within our support group is real; undoubtedly because we’re all sliced from the same cake. The pooling of knowledge, much of it hard-earned, is of considerable benefit. If one of us has a particular problem, he can be reasonably confident that another group member has already dealt with a similar problem and will be happy to share his experience. As well as anything else, our meetings are an evening out: a short period without immediate responsibilities, sharing banter, repartee and humour. And let’s not forget that the meetings involve a free meal and drinks! Away from the hospital environment, my wife has had good support from her OT, psychologist and GP. For myself, there is little by way of direct support. A notable exception is my employer, who tries to understand the situation and makes due allowance. It should be said though, that any support given to my wife does provide a sort of ‘second-hand’ support for me. What advice would I give to the partner of someone who’s just been diagnosed? Expect to fight for much of what is needed for both you and your partner. Do not take no for an answer but make sure you do your homework before reaching for the knuckle-duster. And join a support group as early as possible.

Before I joined the group I had been receiving treatment for depression for around 12 months. Prior to this, I was quite chuffed at the way I had been able to manage down my expectations for retirement. Attending the Male Carers Support Group really saved my bacon. For the first time in over 40 years, I could talk to people who understood. I realised that if one person in a relationship has MS you both deal with the effects of it. It was also an incredibly useful forum for MS information, based on experience. It made me realise that no one knows what it is like to be a carer, until they’ve been one themselves. Without realising it, the group supported me over a period of time, enabling me to adjust to my current situation. I now regularly remind myself how lucky, comparatively speaking, my wife and I are. I wish I had known that there were different types of MS, with differing rates of progression. I must have spent the first 20 years of our marriage half expecting to wake up in the morning and finding that my wife would be in a wheelchair from that day onwards. What advice would I give to other people? Don’t try and cope on your own. Talk to partners of other people with MS. For your partner’s sake, as well as your own, seek out other people with MS.

For more resources for family members of people with MS visit mstrust.org.uk/family

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Knowledge is power Monitoring your health, setting goals and solving problems can all be valuable strategies in managing your MS. Nikki Embrey, Clinical MS Nurse Specialist at North Staffordshire University Hospital, introduces practical tips that can help you to understand what affects your MS and how Keep a diary Keeping a diary specifically to monitor your MS can be a helpful tool, recording how your MS alters in different situations at different times. Useful information to keep in your diary might include: • information about your relapses: the date, how you felt immediately before the relapse, when things started to improve, your symptoms, what helped • when a new symptom was experienced • symptom changes and any related factors (for example, if it was a hot day) • questions you would like to ask your health professional, either by telephone or at your next appointment

• prescription medication you are taking, and any medication you have previously tried (it is also useful to note what effects the medication has had and any side-effects) • a copy of your MRI scan reports (you can ask your consultant or MS nurse if you can have a copy of these) • a copy of the results of any other investigations undertaken, such as lumbar puncture or blood tests • a copy of letters between your GP and other health professionals including hospital consultants – this keeps you informed, helps you to remember what was said and is a reminder of when you are due to be reviewed

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Set yourself goals Setting goals gives you focus and a sense of achievement when they are reached. It can also be an important tool in self-management. Your goal should be important to you, something which you can achieve within a specified time limit and which will help you to better manage your MS. In each case: • decide what you want to achieve • look for different ways to achieve your goal • make an action plan with milestones to check your progress along the way • use the action plan • review the results • make changes • reward yourself – celebrate your successes and congratulate yourself on your achievements

1: Identify the problem I’m exhausted by the time I reach work. Why? I drive in the rush hour. Why? Work begins at 9am.

Make your goals SMART • Specific For example, ‘I want to feel less fatigued at work’. • Measurable You can monitor the times you feel fatigued by keeping a diary. • Achievable Feeling less fatigued at work is a good goal but eliminating fatigue altogether may not be achievable. • Realistic Can I actually do this? Yes by using a number of strategies. • Timed Set a manageable time limit so that you won’t lose interest but you do have enough time to achieve your goal. Three months might be reasonable in this example. Break the task down so that you have smaller goals or milestones along the way and review your progress as you go.

3: Select a method to try Trying out a particular idea can take a while so allow a reasonable timescale. For example, if you wanted to try and take a taxi to work: • find out about the availability of a taxicard scheme (this is a subsidised transport scheme run by some local councils); allow one week • arrange for the taxi service to and from work; allow one week • use the service for four weeks

Problem solving There are many approaches to problem solving which can help you to analyse the problems you face. By helping you to look at problems in a structured and methodical way these skills can give you a good starting point where you might otherwise feel overwhelmed.

2: List ideas to solve the problem Ask family, friends and colleagues to help you think of different solutions. If you are exhausted after driving to work you might consider: • taking public transport • getting a taxi • sharing a lift • travelling at a different time • starting work later or earlier • working from home Contact Jobcentre Plus to find out about Access to Work, the Government scheme that can help with the cost of getting to work if you cannot use public transport.

4: Consider the results What did you achieve? What went well? Has your problem been solved? If you haven’t solved your problem try another possible solution and follow the same method of trial and evaluation. Keep going! It may take you some time to find the solution that works best for you.

These tips are adapted from MS and me, our guide to helping you to understand more about your own MS and find the most effective ways to manage this wherever you are on your MS journey. To order a copy (or any of our free publications) see the inside back cover or visit mstrust.org.uk/msandme

Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk

Improving access to new treatments Janice from our Information Team explains how new drugs are appraised and licensed and how the MS Trust is working to ensure people with MS are able to access the best treatment for them Developing new drugs is a long and difficult process. Only one or two compounds in 10,000 tested make it to the point where doctors can prescribe them, and the process may take 10–15 years.

Drug licensing Once a drug has completed clinical trials the manufacturer must apply for a licence so that it can be prescribed in the UK. Most new MS drugs are evaluated by the European Medicines Agency (EMA), which issues Europe-wide licences. The EMA assesses data submitted by the manufacturer for evidence of effectiveness, safety and manufacturing standards. It then recommends whether a drug should have ‘marketing authorisation’ (a licence) or not; the European Commission makes the final decision. The licence may place restrictions on the use of the drug, such as limiting it to a particular group of people or requiring extra monitoring for side effects. The EMA publishes a report which gives the reasons for its decision and further information for the public. NHS appraisal When licensing a new medicine, the regulators focus on quality, safety, and how well it works. They don’t take into account the value for money of a medicine. Although a licensed drug can be prescribed by a doctor, in the current NHS, most health authorities will not pay for drugs which have not been appraised as cost effective. The National Institute for Health and Care Excellence (NICE) was set up in 1999 to help eliminate ‘postcode-lottery prescribing’

in England and Wales. It appraises new medicines, looking at the evidence on how well a new treatment works, on any drawbacks or limitations and on cost effectiveness. In Scotland, appraisal is carried out by the Scottish Medicines Consortium (SMC). NICE guidance is reviewed and adapted for use in Northern Ireland.

Putting a price on treatments A major part of the appraisal is developing an economic model which calculates the cost to the NHS of using the new drug compared to current treatments. To decide what’s good value for money health economists calculate how much someone’s life can be extended and improved by a particular treatment. This is then compared to the cost of the drug. The resulting cost per ‘quality of health-related life years gained’ or QALY is the starting point for the appraisal committee. Costs include: • the drug itself • the cost of monitoring and managing side effects These are balanced against medical benefits and savings to the NHS such as: • reduced use of other medicines or NHSsupplied equipment, such as walking aids • fewer medical appointments and hospital admissions The calculations get very complex! The appraisal doesn’t incorporate the wider costs of MS to society. These might include: • the cost of time off work for the person with MS. • similar costs for a partner who might also have to take time off work

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Treatments in the pipeline for relapsing remitting MS Phase I: Safety testing

Phase 2: Effectiveness studies

Phase 3: Clinical trials

Licensing

NHS appraisal

Laquinimod BG-12 Alemtuzumab Teriflunomide • costs to the state through benefits and lost taxes NICE applies this rule to all appraisals: only direct NHS costs can be taken into account. Generally, if a treatment costs more than £20,000-30,000 per QALY, it would not be recommended as cost effective by NICE.

Public participation Stakeholders and members of the public can contribute at certain stages of NICE appraisals and the MS Trust is actively involved. We: • help frame the scope of an appraisal • submit statements detailing why we think a new drug should be made available • attend appraisal committee meetings • respond to decisions made by NICE. Members of the public can also comment on the appraisal consultation document which lays out the initial decision made by NICE. At the MS Trust we believe that if a drug has been assessed as safe and effective and given a licence, we should do our utmost to ensure that the drug gets a positive appraisal from NICE so that it can be funded by the NHS and used to treat people with MS. This has been a significant part of our work this year as four new treatments for relapsing remitting MS have been working their way through the licensing and appraisal process: • BG-12 (dimethyl fumarate, Tecfidera) • teriflunomide (Aubagio) • alemtuzumab (Lemtrada) • laquinimod The MS Trust has responded to NICE appraisals for all four and we have persuaded NICE to accept that what it calls “best supportive care” (ie just treating symptoms) is not current clinical practice. This means that

when NICE looks at the economics of the new drugs, they’ll be comparing costs to existing disease modifying drugs, rather than just basic care, which has a much lower price tag.

What about treatments not appraised by NICE? At the MS Trust we hear from many people who are unable to access treatments such as fampridine (Fampyra) and Sativex, which, though licensed for use in the UK, have not been appraised for use within the NHS. Sativex has been licensed as an add-on treatment for spasticity while fampridine has a conditional licence for people with walking difficulties. The drugs don’t work for everyone but a two to four-week trial period identifies those who will benefit. Both will be included in the review of the NICE MS Clinical Guideline which is due to be published at the end of 2014. Until then, funding decisions are made locally by the relevant NHS authorities according to local priorities. This means that in most cases funding is not available. We’ll be working hard, locally and nationally, to try to improve access to these drugs. The MS Trust publishes free factsheets on all the drugs mentioned in this article. To order see p23 or visit mstrust.org.uk/pubs

To find out more about how the MS Trust campaigns to improve services, visit mstrust.org.uk/action-for-ms

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“I held my knee together with velcro, my fingers together with tape and my spirit together with chocolate . . .” Olly Keith explains why she signed up for our Monster Ski fundraising event and what made all the hard work worthwhile Shortly before I turned 50, I was diagnosed with primary progressive multiple sclerosis. I also contracted a severe case of ‘Googleitis’: I couldn’t stop looking things up on the internet. Apparently I have a 50 per cent chance of needing a wheelchair in the future. For me, that means that I have a 50 per cent chance of not needing a wheelchair. But the internet also has its advantages. I am a keen skier and, over the years, I managed to achieve a pretty good standard. One Sunday afternoon I typed in ‘multiple sclerosis’ and ‘ski’. Up popped ‘Monster Ski’.

Determination and tenacity Monster Ski is an event that raises funds to support the work of the MS Trust. It was conceived by Mike Laver, a former RAF helicopter pilot, himself diagnosed with MS in 2005. The challenge is to ski down the equivalent height of Mount Everest on three consecutive days. The money you raise helps the MS Trust to provide free, practical, evidence-based information for everyone affected by MS. In the past Monster Ski has taken place in Whistler, Colorado and Engelberg. This time it was based in Tignes, with access to the Espace Killy, France’s largest ski area. In a moment of madness, I signed up. What I now lacked in co-ordination, balance and symmetry, I would make up for in determination and tenacity. I hadn’t read that you had to remain upright while descending! I borrowed a cross trainer from a friend and bought a rowing machine on eBay. Evenings were spent rowing nowhere in front of ‘Celebrity Mastermind’. I also devised a

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training programme using various bits of furniture to lean against, stretch to, press up from – to the bemusement of my lurchers. The theory was that, as I was likely to fall over a lot skiing, I needed to have the strength to get myself up. The response to my online fundraising page was overwhelming. I was humbled by the tremendous support I received and the lovely encouraging comments people wrote. Although the one from my GP said “I always thought you were mad”!

Strength and stamina 14 amazing people (and me) took part. We were aged 25–57, three of us had MS, most were experienced skiers and five were snowboarders. All of us had our own motivation, and most of us had a personal connection to MS. The first night in the hotel was spent getting to know each other and trying not to get too anxious. The morning snow conditions were excellent: beautifully groomed pistes, blue skies and sunshine. We skied flat out from the first lift at 8.30am until last thing, with only a brief stop for lunch and absolutely no breaks for hot chocolate or vin chaud along the way! There were some casualties. One person broke a rib, one was whacked in the face with a ski, and one fell getting out of the minibus on arrival in resort (me). Having sprained two fingers and my knee, and grazed my knuckles before I’d even got to the slopes, I thought it was over before it began. However, I held my knee together with velcro, my fingers together with tape and my spirit together with chocolate.

This was an intense test of strength, endurance and stamina. It was hard, hard work. Sometimes it felt more like skiing up Everest. I ached more than I had ever ached! But each run brought us closer to our goal. By the end, we had smashed our target. I personally had clocked up 100,000 feet and skied well over 100 miles.

I have MS. It doesn’t have me Not only had I faced a personal challenge, but I also raised over £6,000 for the MS Trust. The whole team raised more than £25,700. That’s enough to fund the MS Trust’s enquiry service for four months! Everyone had given it their all, and more. Looking back, I remember several people thought I would be crazy to take part. No-one said it out loud, but the quizzical head tilts and eyebrows raised always whispered “but you have MS”. But it doesn’t have me! So, thank you to everyone who either simply humoured me or actually believed that I might be able to do this. I am grateful to have had such incredible support to undertake this challenge, and am very proud to have been able to raise money for the MS Trust. The drive and commitment of my teammates was inspirational and the whole adventure was truly memorable. And if I never ski again it wouldn’t matter. Because I conquered Monster Ski.

Get involved There are loads of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ways. To find out more visit mstrust.org.uk/fundraising MS Trust Christmas Cards Our Christmas card shop is now open with a range of great designs to suit all tastes. mstrust.org.uk/christmas Santa Run Fancy dress 5K or 10K fun run in London’s Victoria Park on 8 December. Join our team of 100 Santas in this accessible family event. mstrust.org.uk/santarun Iceland Trek Take a dip in hot springs, camp by a huge volcanic lake, pass by steaming lava fields... An experience you will never forget. mstrust.org.uk/iceland Kilimanjaro Trek This breathtaking trek will take you through deep forest, moorland and onwards towards glaciers before reaching the Uhuru Peak. mstrust.org.uk/kilimanjaro

This article first appeared in a slightly different form in the Morecambe Bay Medical Journal.

The next Monster Ski takes place in Chamonix, France from 16–20 March 2014. The registration fee is £150 and the minimum sponsorship is £1,500. If you’d like to know more visit mstrust.org.uk/monsterski email fundraising@mstrust.org.uk or call 01462 476707

Christmas Challenge Take on the MS Trust’s Christmas Challenge for lots of fun and festive ways to help. mstrust.org.uk/christmas2013

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

15 Alex Cowan

minutes with

Alex Cowan is a sex and disability adviser and campaigner. She spoke at this year’s MS Trust annual conference and is working on a new book about sex, intimacy and disability You were a torchbearer in the 2012 Paralympics – how was that? It was an amazing experience. What overwhelmed me was the generosity of spirit of the public. After I carried the torch I had arranged to meet my family and friends in the Southbank Centre. When I came out of the lift with the torch all my friends started clapping, which was amazing. And when I wheeled through the ground floor café everybody started cheering and clapping. And that was so emotional. It was an incredible privilege, because I was chosen because of my disability work. That is what meant the most to me. You and your husband appeared on Channel 4’s Sex Education Show – how did you find that? We gave it a lot of thought. Would it be exploitative? How did we feel about that level of exposure? It was only going to be a short interview, but still. Television’s very powerful. But we decided that the message was an important one. If we could get the message out that disabled people are interested in sex, want sex and have sex and have relationships... Because it seems to be such a taboo subject. We did ask for a couple of things. We objected to the language they used in the captions, like the word ‘sufferer’. We really don’t like that word because it makes it sound like your life is full of suffering and nothing else. And my life isn’t. What was funny was that although we didn’t tell anybody about the show, we got so many people phoning us up saying “Oh my god! You were on TV!”. It seemed like people really responded to our message. That meant a lot, that people were saying to us, “you don’t see disabled people talking enough about sex, just in a very mainstream un-sensationalist way”.

Can you see the impact of your work? I think it is slowly starting to change. I hope my work changes people’s minds about certain things, or makes them think about the issue of disability and sex and intimacy in a different way. I did some peer counselling with another wheelchair user and she said to me “you’ve made me feel better about myself and consider different things to do in relationships that I hadn’t thought about before”. And then a few months later when I heard from her she had started a relationship. That was fantastic. To think that some of my work helped and contributed to her feeling now able to do that in a different way than she had before was fantastic. Also some health practitioners have commented that my workshops have been “practice changing”. That makes it so worthwhile. Can you tell us about the book you’re working on? I’m writing a book on navigating sex, intimacy and disability. When my husband and I needed imaginative ideas to help us with the physical problems and challenges The MS Trust we faced, we couldn’t find anything. publishes guides I thought if I can’t find anything I’m to sex, intimacy sure there are other people looking and MS for both for something too. So it will be a kind men and women. of mix of tips. People could read it To order or read and they might think “Ooh, I hadn’t online see the thought of that”, or “I’ve tried that” page opposite or “No, that won’t work for me”, or “if I just change this bit of it, it would work”, or they’d read and think “Oh my gosh, so other people feel these things like I do”. It would describe people’s situations and experience but also be positive and hopefully helpful. If you would like to contribute to Alex’s book, email theintimacybook@yahoo.com All contributions will be anonymous.

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Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs Books MS and me: a self-management guide

Talking with your kids about MS

MS explained (revised)

Disease modifying drug therapy

Managing your bowels

Managing your bladder

The young person’s

guide to MS

The kids’ guide to MS

Sex & MS: men

Sexuality & MS: women

Factsheets Alemtuzumab (Lemtrada)

Bladder management

BG12 (Tecfidera)

Depression

Laquinimod

Vitamin D (revised)

Teriflunomide (Aubagio)

Pregnancy & parenthood

Pain

Clinically isolated syndrome (CIS)

Cognition

Diet

DVD

Move it for MS – a DVD of exercises for people with MS

Publications list

The full list of publications available from the MS Trust

MS Trust emails

MS Trust supporters news

MS Trust weekly research update

MS Trust weekly news alert

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Over 100,000 people in the UK live with MS. No two people experience exactly the same symptoms. But no one need deal with MS alone. At the MS Trust we offer free, practical, evidence-based information to make living with MS a little easier. We’re online, on the phone and in print with the right information at the right time for you. If you have a question about MS • give us a call on 0800 032 38 39 • email us at infoteam@mstrust.org.uk • or visit mstrust.org.uk to browse our full range of resources and find out more about our work. The work of our small team is entirely funded by the donations of people like you. If you’d like to help us help everyone affected by MS visit mstrust.org.uk/getinvolved

NEW The revised edition of MS Explained gives a basic overview of MS and what it can do to your body. Informative and helpful, with a full glossary of terms, it’s an ideal introduction to MS. To order this and other free publications see overleaf.