Open Door Quarterly newsletter of the MS Trust
November 2015
Introducing the new MS Decisions How we developed a new guide to help people with relapsing remitting MS weigh up their treatment options
Also in this issue: Early treatment: a new consensus
How do bladder problems affect people with MS?
How can a speech therapist help?
Focus on: trigeminal neuralgia
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Welcome to the November issue of Open Door! Here at the MS Trust we’ve just returned from the conference we organise every year for MS health professionals. If you’re affected by MS you may not be aware of this event, but we believe it’s one of the most important pieces of work we do. The conference is a vital opportunity for MS specialist nurses, occupational therapists, physiotherapists, neurologists and other MS health professionals to catch up on the latest research, find out about the latest developments in symptom management and get together to discuss how they can deliver an even better service for people living with MS. You can find out more about the conference and what it means for you on our new-look website at mstrust.org.uk/conference-2015 The future of MS services is a hot topic at the moment. At our conference we presented the final report on our twoyear GEMSS project, helping MS specialist teams generate evidence for the value of their work. We believe this report makes the best case yet for the value of MS specialist nurses, and establishes why we need more of them. You can see for yourself at mstrust.org.uk/gemss-final-report The report also lays the foundation for our new project, MS Forward View. Over the next year we will be working with a whole range of commissioners, managers and health professionals to find ways to make sure that everybody affected by MS can access good quality care whenever they need it. This is a particularly crucial piece of work in the light of the new consensus that’s been agreed between MS organisations about the need for early treatment and regular monitoring (see p4). All of this work is only possible thanks to people like you. It would be remiss of me at this time of year not mention our fantastic 2015 selection of Christmas cards. Christmas cards were the basis on which the MS Trust was founded and still go a long way to funding our work. I hope you might have a browse at mstrust.org.uk/christmas and find something you like.
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Research update The latest research on the effects of bladder problems, smoking and vitamin D
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MS decisions Introducing our new resource, designed to help people with relapsing remitting MS weigh up their treatment options, have better discussions with their health professionals and make the choice that works for them
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How can a speech and language therapist help?* Melissa Loucas explains what help is available for common MS speech problems
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Focus on trigeminal neuralgia* Professor Joanna Zakrzewska explains what causes this severe type of facial pain and how it can be treated
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Get involved Read our exciting news about the 2016 London to Paris cycle ride, and find out how you can get involved 21 Could you don your apron and take part in our Great Christmas Cake Off?
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Best wishes
News The new consensus on early treatment and regular monitoring, a round-up from this year’s ECTRIMS research conference, and good luck and congratulations to some of our amazing supporters
15 minutes with Linden Muirhead The MS Trust’s Director of Information and Engagement explains why we’ve developed a new-look website and what it means for our online services
Pam Macfarlane Chief Executive, MS Trust PS: Did you know that you can now read Open Door online, on your tablet, by email or in large print? To find out more visit mstrust.org.uk/opendoor
Articles marked by an asterisk have been produced in accordance with the Information Standard
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 Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Affected by any of these news stories? Call our info team: 0800 032 3839
News
Keep up to date with the latest MS news by signing up for our weekly email round-up mstrust.org.uk/newsalerts
For full references see mstrust.org.uk/information/news
MS T RE ATM E N T
MS charities agree consensus on early treatment > MS charities and health professionals join the MS Trust in calling a new focus on early treatment for people with relapsing remitting MS The MS Trust, along with MS charities the MS Society and Shift.MS, MS health professionals and people with MS, have drawn up a new consensus on early treatment “This means a new era and monitoring in MS care – and the MS for people Trust is helping to lay the living with foundations.” relapsing – Amy Bowen remitting MS. Amy Bowen, Director of Service Development at the MS Trust said: “We believe this consensus means a new era in MS care – and the MS Trust is helping to lay the foundations. Treatment decisions are complex and can feel overwhelming. Our new independent guide to MS drugs, MS Decisions, helps people with MS become better informed about their treatment options. And by continuing to work closely with the NHS and MS health professionals, as well as ensuring every MS nurse, physio and occupational therapist is trained in MS specialist practice, the MS Trust will make sure that everyone with MS, whatever type or stage, receives the best possible care.” The full text of the consensus that has been agreed by MS charities, health professionals and people with MS is on the right.
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Early treatment in relapsing MS: the consensus statement We believe that everyone with relapsing remitting MS should be offered disease modifying treatment as close to diagnosis as possible. There is a growing body of evidence that early treatment improves long-term health and wellbeing by slowing down the build-up of irreversible damage and reducing the number of relapses people experience. We believe that making early treatment a reality requires a new era in MS care, focusing on proactive treatment, monitoring and care. Everyone with MS should benefit from access to the specialist services they need to manage their condition, as well as the information they need to make the choices that are right for them. We are committed to working with national bodies, health professionals and people with MS to build a greater consensus and ensure everyone with MS gets the best possible care. In particular, we believe that everyone with MS should have: • a fast, accurate diagnosis • a treatment plan agreed within six months of diagnosis, developed in discussion with their neurologist and MS specialist nurse • ongoing access to a multidisciplinary team with expertise in managing MS, including an MS specialist nurse • a comprehensive review of their MS, including an MRI scan, every twelve months • the ability to change treatment if there are signs their MS is not responding to treatment.
Open Door November 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust
For more on all symptoms, drugs and treatments see our A-Z of MS: mstrust. org.uk/atoz
News MS Trust book highly commended
Good luck to the Lions! Four friends who met at the University of Birmingham will be setting off on a mission to row across the Atlantic Ocean next month with the aim of raising £100,000 for the MS Trust. The Atlantic Lions, otherwise known as David Middleton, Charlie Hayward, Joe Mile and Matt Townsend, will be making the crossing in memory of David’s Uncle Gary who had MS. Their voyage from the Canary Islands to the Caribbean is likely to take 40-90 days, so spare a thought for our team out there on the Atlantic Ocean as you are sitting down to your Christmas dinner! If you would like to sponsor the Atlantic Lions or follow their progress, please visit their website atlanticlions.com or follow them on Twitter @atlantic_lions.
The MS Trust book Secondary progressive multiple sclerosis was highly commended in the BMA Patient Information Awards. The BMA awards encourage well-designed, clinically balanced information that promotes greater awareness and understanding of health matters, and patient choice. The award’s reviewers described the book as “well-written, well-laid out and very patient-centred... This is good quality information that is challenging in its subject matter, while being empathetic.” The book was written as an introduction for those living with the condition and for their family and friends. It describes what’s happening when relapsing MS becomes progressive, why making a diagnosis is not always straightforward, and how rehabilitation can be used in the management of the condition. To order the book see the order form on p23 or visit mstrust.org. uk/spms
Women of the year! We were delighted to hear that MS Trust supporters Trishna Bharadia and Jo Rodda were nominated for the 2015 Women of the Year Awards in October. The Women of the Year Lunch and Awards brings together more than 400 women, all of whom have achieved something of significance. Last year Jo set a world record and became the fastest women to complete the London to Paris Ultra Triathlon. All in all she raised almost £30,000 to support the MS Trust’s work. Trishna took part in this year’s special edition of The People’s Strictly for Comic Relief and also helped us launch Making Sense of MS, our resource for people newly diagnosed. We’d like to congratulate Trishna and Jo on their amazing achievements and thank them both for their support, which has played a huge part in helping us make a difference for people living with MS.
Trishna and Jo: women of the year
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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News MS RE S E A RC H
A new focus on brain health, drugs for progressive MS and insights into cognition: the highlights from this year’s ECTRIMS conference MS Trust Director of Service Development, Amy Bowen, reports on the big developments from ECTRIMS 2015, the world’s biggest international MS research conference This year, the major scientific conference for MS, ECTRIMS, was held in Barcelona. I was fortunate to be able to attend on behalf of the MS Trust and I tried to get to as many sessions as I could cram in, listening to researchers and clinicians from around the world sharing their findings and grappling with the big issues in MS.
Brain health Before the conference even officially started I attended possibly the most significant event of the week: a meeting to launch a new report called Brain Health: Time Matters in Multiple Sclerosis. This is an international report, written by a multidisciplinary group and chaired by Professor Gavin Giovannoni from the UK. The report makes the case for a new strategy for treating MS. The focus is on brain health and it has three main messages: 1. To aim to start treatment soon after diagnosis (and trying to minimise any delays to diagnosis). 2. To set a goal for treatment to not just stop relapses but also to minimise any changes that can be seen on brain scans. If either happens, then that might be time to change the treatment until the goal is reached. 3. To encourage people with MS to adopt what is described in the report as a “brain-healthy” lifestyle. That has to do with a
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healthy diet, taking exercise, not smoking and keeping any other health conditions, like heart disease or diabetes, wellcontrolled (or to try and avoid them in the first place). I suspect that what a brain healthy lifestyle actually means is going to evolve as we all start thinking and talking about it more. In the end, it’s about playing the long game, trying to protect your health over the long term and set up the best conditions possible for your future. Drug treatment is important, but it really is only part of the story. The other part is about lifestyle. You can read the report at msbrainhealth.org
ECTRIMS highlights Some participants are already saying that this was the most significant MS conference for many years. Here are my top three
announcements from the conference. You can find more details on each of these “Drug treatment is at our website at important, but it really mstrust.org.uk/ is only part of the story. ECTRIMS2015 The other part is about
Ocrelizumab: new promise for people with progressive MS? The results of studies of the drug ocrelizumab were published. The Oratario study into the drug’s effect on people with primary progressive MS (PPMS) found that ocrelizumab reduced the risk of increased disability, which was sustained for 12 weeks by 24 per cent compared to placebo. Ocrelizumab was also found to be better than placebo for other measures of increasing disability such as the time to walk 25 feet, brain volume and the number of lesions seen on MRI scans.
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lifestyle.”
News Flu vaccinations
The Opera studies in relapsing remitting MS found that, over two years, ocrelizumab reduced the number of relapses by nearly 50 per cent compared to Rebif. Ocrelizumab was also better than Rebif at reducing the risk of increased disability and the number of lesions seen on MRI scans. The primary progressive results in particular are really encouraging. There has never been a positive result in a phase III trial of this kind and it is cause for greater hope that there is a treatment that could have an effect on disability. We look forward to hearing more detail about the trial and whether the positive effects on disability can be sustained over the longer term. It’s an important milestone for people with PPMS.
Lemtrada follow-up results Lemtrada has been previously shown to be a highly effective treatment for people with relapsing MS. Over 600 people who took Lemtrada in large scale clinical trials have been followed-up for five years. Results presented at ECTRIMS show that Lemtrada remained effective. Two thirds of participants didn’t
have further treatment with Lemtrada beyond the first two courses. During the five years of follow-up people treated with Lemtrada continued to have few relapses, no signs of disability progression and a little more than a third of those who had disability before the trials showed improvements. Participants also showed a slowing of brain volume loss. These results are very encouraging, and give us new insights into just how effective Lemtrada can be as a treatment for relapsing remitting MS.
Cognition and MS New research presented by Dr Mariana Cortese suggests t hat MS may start several years prior to people experiencing clinical symptoms, and that cognitive impairment – that is, problems with thinking, memory or planning – could be an early sign. This research reaffirms the importance of early diagnosis and beginning treatment with a disease modifying drug. We’ll be returning to this issue in future issues of Open Door.
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
Plegridy approved by NHS Plegridy (peginterferon beta-1a) can now be prescribed for relapsing remitting MS on the NHS throughout the UK. It is made by adding polyethylene glycol to interferon beta 1a which causes the drug to remain in the body for a longer period. As a result, Plegridy is injected under the skin once every two weeks rather than the more frequent injections required with the other beta interferon drugs. Plegridy has a similar effect to other beta interferon drugs, reducing the number of relapses by about one third compared to placebo. The side effects of the new drug are also similar, with some people experiencing redness at injection sites and flu-like symptoms. To find out more visit mstrust.org.uk/ ms-decisions.
QuDos winners The winners of the inaugural QuDos awards for MS health professionals were announced just as we were going print. To find out who won in the various categories visit mstrust.org.uk/qudos-2015
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Research update
Keep up to date with the latest MS research by signing up for our weekly email mstrust.org.uk/e-research
M S A N D CO N T I N E N CE
How do bladder problems affect people with MS? Bladder problems can be common in MS, but many people can be too embarrassed to seek help. This study aimed to find out more about living with a bladder problem to better understand what could be done to help Authors Browne C, et al Title Bladder dysfunction and quality of life for people with multiple sclerosis Journal Disability and Rehabilitation 2015 Mar 24 [Epub ahead of print] >> Read the full study: tinyurl.com/ms-bladder
The study 19 people with MS in Ireland took part in the study. Nine had relapsing remitting MS, seven secondary progressive MS and two primary progressive MS. All had at least one bladder symptom, such as leakage of urine, difficulty in emptying the bladder or needing the toilet more than eight times a day. Each participant took part in an individual interview where they discussed their experience of living with bladder problems and how it impacted on their daily life.
The results The participants felt that bladder problems had disrupted their lives, interfering with their usual routine and activities such as sleep, travel and sexual relationships. Some also reported they had lost things that had been important to them such as control, security and enjoyment of events. Many of the participants believed that bladder symptoms
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were an unavoidable result of MS and nothing could be done by health professionals to help them, they just had to live with it. All of the participants had learned through experience which specific actions made their bladder problems worse. 16 of the participants described how they had been managing their bladder symptoms themselves, after learning about what they could do through trial and error.
What does it mean? The authors conclude that more needs to be done to raise awareness of the general and specialist help that is available to help people with MS manage continence problems. They also highlight a need for more information about selfmanagement of bladder symptoms to be made available to people that are too embarrassed to ask for or accept help.
How can you manage MS bladder problems? Bladder problems are one of the most common symptoms reported by people with MS and they can have a big impact on many aspects of life. Although bladder or bowel symptoms can be hard to talk about, it is worth seeking support as successful treatment is available and straightforward lifestyle changes can also make a real difference. If you are experiencing bladder symptoms, you can speak to your MS nurse or GP who may refer you to continence services. These nurses specialise in helping people with bladder and bowel symptoms and can work with you to find the best To find out way of managing your more about bladder problems. managing bladder
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problems visit mstrust.org.uk/bladder or order our book on p23
R E SE ARC H U PDAT E
MS A N D SM O K I N G
Does smoking after diagnosis speed up the transition to secondary progressive MS? There is increasing evidence that smoking tobacco is a risk factor for developing MS. However, it is not clear whether smoking after diagnosis affects how MS progresses. This study looked at whether smoking after MS diagnosis is associated with a more rapid transition to secondary progressive MS Authors Ramanujam R, et al Title Effect of smoking cessation on multiple sclerosis prognosis Journal Journal Journal of American Medical Association Neurology 2015 Sep 8:1-7. [Epub ahead of print] >> Read the abstract: tinyurl.com/MS-smoking-progression
The study
The results
728 people with relapsing remitting or secondary progressive MS in Sweden who were registered with the large Genes and Environment in MS Study took part in this study. Participants completed questionnaires that collected information about their smoking habits. The researchers then divided the participants’ data into one of three groups to see if there was any difference between them. Continuers (332 participants) were those who had smoked at least one cigarette per day continuously each year after diagnosis. Quitters were those who had stopped smoking within a year of being diagnosed with MS. Intermittent smokers were those who had not quit completely, but had smoked on and off since diagnosis. The study looked at whether smoking affected when people with relapsing remitting MS transitioned to secondary progressive MS (SPMS).
The researchers found that those participants who continued to smoke after diagnosis reached the transition to SPMS more quickly than those who quit smoking. Those who continued to smoke converted to SPMS at an average age of 48, rather than 56 years old for those who quit smoking within the year after their MS diagnosis.
What does it mean? This study shows that continued smoking is associated with a more rapid transition to SPMS and that those who quit could fare better. The researchers conclude that people with MS should be advised to stop smoking once a diagnosis has been made. This would not only lessen the risks of developing other health conditions associated with smoking, such as heart disease and cancer, but could also avoid aggravating MS-related disability.
Smoking and MS There is increasing evidence linking smoking to risk and symptoms in MS. It has been linked to an increased risk of getting MS in smokers and an increased chance of children later developing MS after being exposed to second-hand smoke. Studies have suggested that people with MS who smoke experience more relapses and a more rapid disease progression than non-smokers. As smoking is also a risk factor for a range of other conditions such as cancers and cardiovascular disease, giving up, or at least cutting down, is recommended. There are a range of support programmes and your GP can advise you on what might work for you. NHS Choices has more information on giving up smoking including eight suggestions of things To find out more about that could help MS and smoking issues you stop.
see mstrust.org.uk/ smoking
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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R ESE A RC H U PDAT E M S A N D V I TA MI N D
Are people with low levels of vitamin D more likely to develop MS? Many studies have demonstrated an association between decreased vitamin D level and risk of MS. However, it remains unclear whether this relationship is causal. This study looked at whether low levels of vitamin D influence the risk of MS
Authors Mokry LE et al Title Vitamin D and Risk of Multiple Sclerosis: A Mendelian Randomization Study Journal PLOS Medicine. Epub ahead of print DOI:10.1016/jexpneurol.2015.05.017 >> Read the summary: tinyurl.com/ms-vitd-risk
The study The researchers used information from the International Multiple Sclerosis Genetics Consortium study to identify a number of genes and genetic changes strongly linked to vitamin D levels. The study involved nearly 15,000 people with MS and just over 24,000 control participants. All participants were of European ancestry. The researchers used the genetic information to look at the differences between people with MS and the controls, to determine whether there was in fact a causal relation between low vitamin D levels and risk of developing MS.
The results The researchers found that people with genes that cause them to have low levels of vitamin D were more likely to develop MS. These results match the information gathered previously in observational studies that measured vitamin D levels in people. However, the authors highlight some study limitations, and they did not look at whether vitamin D deficiency affects MS disease course or severity. Because the results only apply to people of European descent, the results may
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be different for people with different genetic backgrounds.
What does it mean? The study provides strong evidence that low vitamin D levels increase the risk of MS. These results match the information gathered previously in observational studies that measured vitamin D levels in people. The researchers suggest that taking supplements to increase vitamin D levels in people at genetic risk and also living in areas where sunlight levels are low, could help reduce the risk of developing MS. However further research would be needed to investigate if increasing vitamin D, through supplementation, diet, or sun exposure, did actually reduce the risk of developing MS.
To find out more about MS and vitamin D see mstrust.org.uk/ vitamin-D or order the factsheet on p23
How much vitamin D should you take? Vitamin D has several important roles in the body including keeping bones and teeth strong and healthy and regulating immune responses. It can be obtained in several ways. It is manufactured by the skin when it is exposed to sunlight, it can be obtained in the diet or by taking supplements. However, levels of vitamin D in people in the UK are generally low. The Department of Health reports that a quarter of the population have no more than a third of what is considered an adequate level. The recommended daily intake in the UK (400IU or 10 micrograms, also written as Âľg) is based on maintaining healthy bones. Vitamin D continues to be a hot topic in MS. There are a whole range of opinions on whether taking vitamin D supplements could make a difference and, if so, how much someone should take. Some MS neurologists are now recommending that people with MS and their family members take vitamin D supplements. Some advocating doses of up to 5000IU a day, while others advise waiting for more evidence of effectiveness and safety from clinical trials before taking supplements. Taking too much vitamin D over a long period of time can be harmful. As vitamin D regulates the absorption of calcium too much can encourage calcium to be removed from bones making them soft and also damage the kidneys. Talk to your MS nurse or GP if you are considering taking vitamin D supplements, as your calcium levels should be checked and monitored.
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Introducing MS Decisions This year the MS Trust has worked with health professionals, people with MS and other MS charities to try to create a new focus on treating relapsing remitting MS as soon as possible. We believe there’s increasing evidence that early treatment improves the chances of people with MS staying healthy in the long term. However, working out which treatment is right for you can seem more complicated than ever. The range of options for MS treatment has expanded significantly in recent years. There are now 11 disease modifying drugs licensed for treating MS in the UK. They’re each taken and monitored in different ways, and they each have their own benefits and risks. What’s more, not all of them are available in all parts of the UK. Back in 2004, the Department of Health launched a website called MS Decisions. This was designed to help people find out more about MS treatment options. Thousands of people visited the site and found the independent information useful. However, over the years, the information didn’t keep pace with the changes in MS treatments. This year the MS Trust took over responsibility for MS Decisions. We wanted to update it so that it offered reliable, independent information on all the MS drugs now available – and make sure it remains accurate as new treatments become available in the years to come. But we also wanted to make sure that the information was presented in a way that made it easy for people to MS to see what options were available, consider the factors that are important to them, and compare MS drugs in a simple, intuitive way.
We’ve worked closely with people with MS, MS nurses and neurologists to develop the new MS Decisions which you can now find at msdecisions. org.uk The site now features a guide to making your decision, full details about all of the drugs, a list of common questions, as well the decision aid. We’ve also redesigned our booklet Disease modifying drugs to complement the site and to help people with their MS become better informed and have more productive meetings with their health professionals. Over the following pages, we explain how the new resource works, speak to some of the people who’ve helped us develop it and hear from people with MS who’ve tried it out. As with everything the MS Trust does, MS Decisions is only possible thanks to our supporters. We’d like to thank the February Foundation, the Sylvia Adams Trust, the Astor Foundation and the Goldsmiths Company for particular support for this project. But we’d also like thank all of you who made a donation, took part in a fundraising event, completed a survey or helped us to promote MS Decisions. With your help we can make sure that people with MS receive independent, reliable To order see the form on p23 information that works for them.
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MS D EC I SI O N S
Introducing MS Decisons 2
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In the new consensus statement (see p4) we recommend that people with MS draw up a treatment plan with their neurologist and MS specialist nurse within six months of diagnosis. But even if you aren’t newly diagnosed, you can still benefit from taking a DMD. Your health professionals should discuss what type of MS you have, factors that might affect your treatment choice, and then maybe recommend a DMD or draw up a shortlist of options. At this point they can give you the new MS Trust book, Disease modifying drugs, and direct you towards the MS Decisions website msdecisions.org.uk so you can find out more.
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MS Decisions also includes a really useful Decision Aid. By ticking some boxes (where in the UK you live, what type of MS you have, how you’d prefer to take a drug , and so on), you can filter out options to find the drugs that you think would work best for you.
The MS Decisions website includes background information about the 11 available disease modifying drugs, answers to some frequently asked questions (covering issues such as eligibility, starting treatment, living with treatment and stopping treatment), and a guide to decision making. This helps you consider which factors are important to you in making a decision - your personal circumstances, your attitude to risk, and the implications of not taking a disease modifying drug.
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You can then select up to three drugs from your filtered results and choose to view them side by side. This comparison grid can help you see at a glance more details of the drugs: their side effects, how they’re monitored and how they might affect your plans for having a baby. This can be handy if you’re discussing your treatment choice with friends and family.
5 We believe that everyone taking a disease modifying drug should have an annual check-up to see how effectively their treatment is working. If there are signs that your MS is still active you might want to consider changing to a drug that might be more effective. At this point you can have further discussions with your health professionals and return to MS Decisions to weigh up your options.
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Once you’ve found out more about disease modifying drugs you can return to your neurologist or MS nurse and discuss how you’ve weighed up your options and work out the best way to proceed. If you’ve agreed on a treatment, you should discuss when you want to start and how the treatment will be monitored.
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M S DECIS IO NS
Getting the balance right Neurologist Dr Paul Molyneux and MS specialist nurse Ruth Stross both sat on the editorial panel for MS Decisions. Here they explain why they got involved and how they believe it will help them help people with MS Dr Paul Molyneux, neurologist When I started as a consultant 13 years ago, the only therapies we could offer were injectable, the choice being between one of the interferons and Copaxone. We now have a wide and diverse range of therapies, with choice of therapy now becoming a much more complicated decision. While this choice is to be welcomed, it does bring with it some difficult decisions that doctors, people with MS and their relatives now have to make. These issues take time to explore and explain and I see my role as providing as much information as possible for all those treatments that are appropriate for an individual patient. I try to explain that not all treatments will be available for an individual person with MS, and focus on those treatments that are applicable. I was really excited about the opportunity to update MS Decisions, bringing it up to speed with all the new treatments and helping make these difficult decisions. Anything that can help people with MS in making the correct choice is to be welcomed. This resource creates opportunity to complement the face-to-face discussions in clinic with something that people can use in their own time, to come to an appropriate decision. It has been really exciting to have been involved in helping develop this resource. With such a vast amount of information available on each of the treatments, finding a way of condensing this into a format that is easy to use has been a huge challenge for everyone who has worked on it. Finding the right balance between providing enough information, on the one hand and not deluging people with a vast array of highly technical data has been a challenge, as everyone’s needs will be slightly different, but I sincerely hope the up to date MS Decisions tool has got the balance right It will continue to do what the older version did, but update for the modern
“It has been really exciting to have been involved in helping develop MS Decisions” Dr Paul Molyneux
era of MS therapies. If it achieves what we hope, it will provide a really valuable addition to the work of the MS Team in providing the right amount of detail, at the right time and in the right context for people facing decisions around treatment.
Ruth Stross, MS specialist nurse
and I need to have access to updated information in the clinic room. Paper versions are excellent but become out of date quickly so I know I will use the new website frequently. The MS Trust is so well respected for their publications and support they provide that the new MS Decisions website already has a great platform. It is always a pleasure working with the MS Trust on projects like MS Decisions. The mutual respect and acknowledgement of relevant knowledge and expertise from both parties is always there. I think we now have a deeper understanding of the complexity around the decision making and the joint working between MS specialist services in hospital and the community. I think MS Decisions is going to be a great help for everyone involved: people with MS, neurologists and specialist nurses.
MS drug treatment has seen incredible changes since I first became a nurse. In the old days, MS had been mostly crisis managed: symptom and relapse management was extremely basic and often needing people with MS to stay for long inpatient admissions. People trying to cope with the after effects of a relapse were often hospitalised and the subsequent deterioration and progression in their MS impossible to avoid. Since then the situation has changed from a basic offering of a few oral symptom management medication like Baclofen and Oxybutinin to the advent of over 10 licenced DMDs for MS. From no choice to a confusion of choices! This development over the last 15 years has been unbelievably exciting to be a part of and to watch how these medications have given people with MS hope and an alternative to the previous diagnosis conversations of “there isn’t much we can offer”. As a community-based nurse I have a need for clear advice on the MS drugs
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MS D EC I SI O N S
Getting involved Karen McTaggart and David Harrison were both diagnosed with MS in 2014, and volunteered to help us review MS Decisions. Here they tell us why they got involved and how they helped Karen McTaggart When I was diagnosed with MS I was advised that Tysabri was my best option as a result of my MRI findings. I was diagnosed with highly active, rapidly evolving, relapsing and remitting MS. I received support from my neurologist and my MS specialist nurse. They gave me a Tysabri DVD to watch and lots of MS Trust leaflets! I also received lots of support from my husband and my parents in reaching the decision to go ahead with Tysabri. I looked at the version of MS Decisions which was available at my time of diagnosis, although I felt so unwell I didn’t spend too much time on the internet, but I did read what I could about Tysabri! When I heard that I the MS Trust was looking to revise MS Decisions I was keen to get involved. I found MS Trust information the most informative to use. It also seemed very clear to me that it was the source of information that medical practitioners used, which I found reassuring and that helped me to deal with my diagnosis. I needed reliable facts and information! Working with the MS Trust has been good because I felt I could possibly assist other newly or recently diagnosed people of my age group go through their own MS journeys. The MS Trust team asked for the information they need in a very clear and structured way. I think my input was useful because I could point out things which are relevant to living with MS in Scotland and could draw on my experiences of meeting other people with MS through the meetings I attend in Stirling. I really hope that MS Decisions helps people with MS and their families to access reliable information they can trust. I would definitely recommend other people with MS to get involved in MS Trust projects. You will learn a lot about MS by
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doing it. I would advise doing it after you have started treatment and are tolerating it, so wait at least six months or more after your MS diagnosis before you get involved with a project. It also gave me something useful to do during my MSenforced career break!
David Harrison Prior to my official MS diagnosis from a neurologist, I was aware that my symptoms indicated that it was likely that I had MS. So I started doing my own research based on the MS Trust website and others into DMD treatment options a few months before my diagnosis consultation. My consultant recommended starting on Tecfidera, saying that it was more effective than the injectable interferons with fewer side effects. Based on my own research, Tecfidera was my preferred option too. So we went with that, and I started as soon as it was available on the NHS. My consultant recommended I visit the MS Trust website and MS Decisions as a credible source of information. The old version of MS Decisions was very useful in comparing the treatments that were available a few years ago. Though obviously it needed to be updated to include the treatments which have become available more recently. Personally I wanted to avoid the need for regular injections, so was more interested in the newer oral therapies. For me, the MS Trust website is a valuable source of information on MS, which I have turned to many times during the months leading up to and after my diagnosis. It is very helpful to have the condition clearly explained, and the video clips are great. I also like the weekly news emails which provide an overview of recent research into MS and new treatments that are being developed.
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Given that there are an increasing number of treatment options for MS, I think it is vitally important to provide people with MS with an easy-to-use and easy-to-understand guide to help them decide whether DMDs are right for them, and how to make an informed choice between the options. I believe that people with MS should be closely involved in choosing the treatment that is right for them in partnership with their medical team. Hopefully, the updated MS Decisions will help people with MS to do that. I found the experience of working with the MS Trust very positive. I was given plenty of time to review materials and my feedback was always acknowledged and welcomed (I hope). Hopefully, my input has helped, if only in part as the draft materials were very good! I provided input based on my own experiences of going through the diagnosis process and the treatment that I know the best, Tecfidera. I hope the new MS Decisions will help people with MS to decide whether a DMD is right for them, and if so, to make an informed choice about which of the currently available treatments are best for them. There are so many factors to consider, so I think it’s important to take the time to do your own research and to have a credible guide to help navigate you through the process. If you have the time and want to make a contribution, I would definitely recommend volunteering to help the MS Trust. Your input will be highly appreciated, as it’s us people with MS who know best what living with the condition is like.
M S DECIS IO NS
Clear, impartial and easy to use Anna is 29 and was diagnosed with relapsing remitting MS in 2009. She has been taking Avonex, but is now reconsidering her options. She volunteered to test drive the new MS Decisions and was very impressed I found MS Decisions really clear, really easy to understand. Instantly when you go into the website, it’s inviting. It’s not clinical, it’s really friendly. Even the font is friendly! The layout is really clear to understand. One of the things that I immediately found useful were the tick boxes which help you filter your options. So it can in effect take into account your lifestyle: how many times a week do you want to be taking the medication, whether or not you feel able to inject medication or whether you prefer it in a tablet form or another form. We did joke about it at home, we said in a way it’s a bit like buying cushions from John Lewis... Which is a good thing! Because it’s a serious decision, but you want it to be easy and you want it to be straightforward and normal. And this does make it normal. It seemed to me that if you were faced with this decision it would bring you down and you’d think – OK, I can deal with this.
discrete way of looking at. I’m all for being open and talking to people about things, but obviously not everybody is. So you could be sitting on the bus to work, and you might have a thought, and you could have a look. It would be accessible if you were on the way to the hospital on your way to talk to someone. You could look at the info again, and re-establish what it is you’re looking at, more of the facts. It makes it really accessible. If you’re not comfortable talking to friends or family, it can be quite a discrete thing. You can have a look in private.
To have information like this, accessible on a smartphone would have been really useful for me.
Comparing medication Being able to see different drugs side by side was really useful as well. You can see what kind of medication it is, how often you have to take it, what some of the common side effects are, and what some of the rarer side effects are. This is much better than the original MS Decisions site. Before, all the information was there, but you had to sift it out yourself. I also like how it sits within the MS Trust site: rather than it being a separate thing, you can go back into the A-Z of MS, look up things that are unfamiliar, and find out what other people have experienced. To have information like this accessible on a smartphone would have been really useful for me. Just to look at on the go really. I use my phone quite a lot to check emails and to look at things. I think for people who don’t want to sit at home with their laptop out, in front of everybody, looking at these things, it’s a really good
Impartial information I’d recommend it to anybody with relapsing remitting MS. Whether or not you already think you know what treatment you want. I would recommend it because the information is impartial, it’s gone through a filtering process already, so you’re told the things you need to know. The worst thing I found was to look up particular drugs online because you’re given so much information. Not all of it is true. You find testimonials that aren’t quite right. Some of it isn’t impartial, it’s from the pharmaceutical companies and they’re biased towards particular medications. I don’t feel that way of doing it helps with making a decision. I think you just need the facts and you need it to come from somewhere that has your best interests at
heart, that’s there to help. I think that having the information there would help you if you were going to the neurologist or your MS nurse who was maybe helping you make that decision, if you’ve done your homework beforehand I definitely think it would help. and the info would be correct as well. And they’d be able to reassure you. When you go and see a neurologist or specialist they sometimes bombard you with info. To be able to come home and have a look at MS Decisions would help you understand what you’ve just been told. When I first came home out of the hospital having been diagnosed my head was full of what I’d just been told. I couldn’t remember all of it. My head was spinning with all this information. To be able to then go onto a good website in your own time would’ve been really really useful and really helpful in making that decision.
MS voices Would you like to get involved in the work of the MS Trust? We’re always looking for the input of people living with MS to feed into out policy work, help us with media case studies or to review our information resources. If you’d like to volunteer your time or expertise, send an email to msvoices@ mstrust.org.uk, with a few details about yourself and how you’d like to help.
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MS S P E ECH P ROBLEM S
How can speech and language therapists help? Over 40 per cent of people living with MS report that it has affected how they speak. Melissa Loucas, a speech and language therapist based in Reading, explains what help is available Have you ever noticed changes in the way you are communicating which you think might be due to MS? You are not alone. Research has shown almost half (44 per cent) of people with MS report changes in how their speech or voice sounds to some degree (symptoms known as dysarthria and dysphonia). Sometimes language skills are affected, such as finding the right word or following a conversation. Although changes in how your voice sounds can be an early symptom of MS, you are more likely to have significant difficulties with your speech if you have progressive rather than relapsing remitting MS and are experiencing other physical and cognitive changes. If this is the case, speech problems might not be your primary concern. In one large survey, only 9 per cent of people with MS reported significant speech difficulties
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and another study found speech had not really changed over nine years.
Referral to a speech and language therapist You are most likely to see a speech and language therapist (SLT) for communication if you or those around you notice changes in how your speech sounds. The impact of any changes will be very individual but if you feel this is affecting how you join in conversations, socialise or perform at work, you can ask to see an SLT. Your medical team might also suggest an assessment. Usually your MS nurse, consultant or GP can refer you, but sometimes you can refer yourself. The way SLT services are provided varies across the country. Ideally the SLT will work within the MS team because the way you participate in communication can be affected by
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SP E ECH THERAPY
a complex range of factors, including fatigue, mobility, vision and bladder difficulties.
Understanding the problem The SLT will usually assess your voice and speech by listening to you during conversation and in some assessment tasks. They will develop a profile of your speech system, relating to different patterns of muscle movement. A mixture of what is called ‘ataxic’ and ‘spastic’ speech is the most common pattern. You might recognise these terms from medical As well as looking at the or physiotherapy mechanics of your speech, assessments. Here they describe the the SLT will try to understand movement of muscles the impact of symptoms and involved in producing your communication with your speech. They can friends and family cause changes such as a weak voice which gets ‘tired’, a strained-tight or rough voice; slurred speech; disruption to the rhythm of your speech (perhaps robotic sounding and slow); and difficulties controlling the volume or intonation in your speech. The SLT might also assess your language – is there any difficulty finding words or following conversation? As well as looking at the mechanics of your speech, the SLT will try to understand the impact of symptoms and your communication with friends and family and in the workplace. They often use questionnaires to help explore this.
How a therapist can help The SLT will use both sets of information to find ways to help support you. Because of all the factors which can affect communicating, the SLT should work with other members of your health team – for instance an occupational therapist may be helping manage fatigue, or a neuro-psychologist may be helping support any changes in your mood or thinking skills. Sometimes, direct work on the muscles involved with producing your speech will be appropriate. For example, this might improve the accuracy of your tongue and lip positions when speaking or improve the strength of your voice. I have had good results using this approach. For example, after therapy, one man reported less frustration when speaking with his wife as he did not have to repeat himself so often. He also benefitted from another type of help which is often called ‘compensatory’. In his case, it was still difficult for his
wife to hear him as she pushed his wheelchair along a busy pavement. So we worked on planning when to hold conversations and found a voice-amplifier which worked well for him in these situations.
Different approaches Other types of compensatory approach might include • timing conversations with fatigue episodes • reducing background noise • being face to face with your conversation partner • introducing a topic of conversation before giving lots of detail to help the person you are speaking to follow your conversation. A compensatory approach can be appropriate for more cognitive or language-based difficulties with conversation when finding the right words or following a line of thought is more of an issue. Your SLT can help you identify things which make communication more difficult and offer things to help you.
Useful technology As well as amplifiers, there is a lot of other technology available to help with communication which your SLT can help you explore. This can range from text-tospeech apps to more simple communication boards, which have pictures of common words and phrases. These can be helpful in more routine situations, such as telling different carers how you like to be positioned. How much contact you have with an SLT will depend on the nature of your symptoms. It might be brief, perhaps an assessment as part of your initial MS investigations or to help you understand subtle changes. It may be responsive as new problems occur – for example if particular difficulties arise communicating with new carers or if you have a specific speaking role at work with which you need help. Alternatively, you may need intensive therapy for specific areas of need or have a rapidly changing MS which needs regular SLT support.
For more about how MS can affect speech see mstrust.org.uk/speech
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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FO CU S ON
Trigeminal neuralgia Trigeminal neuralgia is a type of severe nerve pain which can be a symptom of MS. Professor Joanna Zakrzewska, a specialist in facial pain at the Eastman Dental Hospital in London, explains what causes it and how it can be treated
Trigeminal neuralgia is a severe nerve pain which can give stabbing or burning sensations down one side of the face. The pain comes on rapidly and, at least initially, lasts for seconds or a few minutes. Anything between 5 and 50 episodes can occur in a day. In between there is often no pain. The pain is sharp and most commonly described as an electric shock or lightning. It is particularly provoked by light touch activities such as eating, brushing your teeth, washing the face, and going out in the cold wind. An attack can last for weeks or months and then disappear completely. These remission periods can vary from weeks to months or even years but at present there is no predicting as to when it will go into remission. Research has shown that people who have multiple sclerosis are more likely to experience trigeminal neuralgia: it affects about four and six in every 100 people with MS. When it happens in MS, the disorder seems less likely to go into remission and is often more difficult to manage. As yet no research has been done to determine if it coincides with relapses in MS or any particular form of MS. Trigeminal neuralgia has a huge impact on quality of life. It can result in loneliness and isolation as so many social events include eating, a task that becomes impossible during attacks. There is always a fear that it will strike unpredictably. Low mood and depression are common during attacks.
The cause of trigeminal neuralgia The cause of the disorder is still not fully understood but we do know that there is ‘cross talk’ between nerve fibres that carry sensations such as touch and vibration to the brain and those that carry sharp pain. In MS this cross talk is caused by loss of myelin on the trigeminal nerve. The damaged nerves react to touch sensations and send incorrect pain signals to the brain. The mixing up of signals can also be caused by compression of the nerve by a large blood vessel inside the skull before the nerve reaches the brain. Current research is looking at potential genetic link, whether myelin formation is abnormal or whether stem cells could be used to regenerate the cells.
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Trigeminal neuralgia is so called because affects the trigeminal nerve (also called the fifth cranial nerve). Neuralgia means “pain that follows the path of a nerve”. The trigeminal nerve has three branches. The top branch (the ophthalmic nerve) affects the eye, forehead and nose. The middle branch (maxillary nerve) affects teeth and gums in the upper jaw as well as the upper lip, cheek, lower eyelid and side of the nose. The lower branch (mandibular nerve) affects the lower teeth, gums and lip.
To find out more, visit mstrust.org.uk/a-z/ trigeminal-neuralgia
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M S DECIS IO NS Treating trigeminal neuralgia As the face looks ‘normal’ and there is no physical aspect to the symptom, there is a lack of understanding of the severity of this disease – not only among the lay public but also among professionals. As the pain often starts in the mouth many people first go to their dentist and may have unnecessary dental treatment. A GP will probably only have a few people with trigeminal neuralgia in their practice and so is likely to be unfamiliar with the condition. People with trigeminal neuralgia should be referred to a specialist pain centre or a neurologist. Recognising trigeminal neuralgia is important as there are medications that can help to bring the condition under control.
Using medications The drugs that are used to manage trigeminal neuralgia are anti-epileptics, especially carbamazepine or oxcarbazepine. These need to be prescribed by a doctor and started at a low dose, slowly increasing until pain relief is achieved. Unfortunately they have side effects which can be particularly troublesome in MS, including unsteadiness, double vision, tiredness and impaired cognitive function. With people with MS I will often use baclofen. A combination of higher doses with one of the other anti-epileptics can often help. None of the strong painkillers, including morphine, help trigeminal neuralgia. The medications do not cure the condition so it is a good idea to stop them when a remission period occurs.
Surgery Surgery is another option but often less successful in people with MS. The nerve can be partially destroyed using heat, a toxic substance like glycerol or compression. This approach does have the risk of causing numbness but can provide a few years of pain relief and can be repeated. If there are no damage to the myelin on the trigeminal nerve and an MRI shows that the nerve is compressed by a blood vessel, then a microvascular decompression can be done. This will provide longer term pain relief but it is a major neurosurgical procedure.
Tips for managing trigeminal neuralgia yourself Living with the pain of trigeminal neuralgia can be draining but there are some options you can try to manage your trigeminal neuralgia yourself probably in combination with drug treatment.
Trigger factors It can be useful to keep a symptom diary to see if there is any pattern to your attacks or any trigger factors that set them off. If you can identify trigger factors, then you can take steps to avoid them where possible, for example by: • avoiding sitting near an open window or by wearing a scarf if your pain is triggered by draughts or a breeze • using a straw if hot or cold drinks cause pain in some parts of your mouth • avoiding particular foods if these are triggers for you. Caffeine, citrus fruits and bananas are amongst the possibilities.
Activities of daily living • If your pain interferes with, or is made worse by, biting or chewing, you may find that eating food of a softer consistency or liquidising food helps. If you are losing weight because of difficulties with eating, you may need to supplement or enrich your meals and you should ask your GP to refer you to a dietician. • cleaning your teeth, washing or shaving can be more difficult so you may need to change how you do these daily tasks. • an occupational therapist may be able to assess the impact of your pain and provide suggestions and equipment to help.
Lack of sleep and depression Dealing with trigeminal neuralgia can be very draining and lead to lack of sleep, isolation and depression. It is good to stay as positive as possible. Your MS nurse or GP may be able to refer you to a clinical psychologist for support in staying positive. This may include cognitive behavioural therapy (CBT) which encourages new ways of thinking and changes in behaviour. Seeing a psychologist or using psychological techniques doesn’t mean that the pain isn’t genuine and physical. These approaches can be just one of the ways that helps you deal with your pain and manage it well.
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Vive La France! The MS Trust has a fantastic opportunity to raise funds next year as we have been named the official charity partner for the special Tour de France edition London to Paris cycle ride! We are looking for 50 cyclists to join our team and raise sponsorship to help us support people with MS. Joe Hill, who took part in the ride this year with three of his friends, tells us why he decided to take on the 300 mile journey
Everyone tells you that MS affects each person differently
Could you help us grow our London to Paris team?
– both those diagnosed with the condition and their closest friends and family. While everyone tells you this, they don’t tell you how to deal with it. My way of dealing with my wife being diagnosed was getting my three closest friends to agree to cycle to Paris with me and signing us up for the ride. Selfishly, I wanted to do something that made me feel like I was contributing. I wanted to feel like I was helping with what my wife was going through. Physically I felt I could only do so much to help her through a relapse and mentally I felt I could do even less. Only two of us had bikes in January and with the ride in July we all thought it would be tough. I found the training a big commitment but relatively easy, most of it was time spent riding with and talking to friends (not doing it on your own makes it easier) and the hours were worth it in the end. The fundraising was daunting but we were lucky with everyone’s generosity raising around £10,000 which was so far past any target we set. Most of this was through sponsorship but friends helped us organise a BBQ and raffle which raised over £1,000. The ride itself was incredible. It was so well organised by the fantastic team at Skyline with loads of support from the crew and other riders. There were a couple of tough days at the start filled with hills and 39 degree heat, but you get to enjoy great views and a great route throughout. Afterwards the sense of achievement and knowing we had raised so much money for the MS Trust meant that all the hard work had paid off. I’d really recommend signing up as this is a great ride raising money for a great charity!
As the official charity partner, we really want to make the most of this opportunity to raise awareness and funds and get as many people involved in the July ride as we can. We already have a great team of people signed up, but there are lots of places still available. If you can help us spread the word by telling your friends and family, displaying posters somewhere or sharing the event on social media, we would be very grateful. If you’re considering taking part yourself, there’s plenty of time for training, even if you’re not an experienced cyclist. We will provide a training guide that advises on the type of bike to use, what clothing to wear and what to eat and drink, as well as a detailed 16-week training programme. We will also provide fundraising ideas and materials to help you reach the £1,460 sponsorship target. We may be able to accommodate riders who wish to take part using adapted cycles – please get in touch if you’d like to discuss this option. Cycling from London to Paris is one of the greatest European cycle experiences. There will be long days in the saddle and some strenuous hill-climbs, but the picturesque countryside, camaraderie with your fellow riders and the sense of achievement when you reach the Eiffel Tower will make this a really memorable adventure. As an extra special bonus, the final day of this London to Paris cycle ride coincides with the 2016 Tour de France finale. So the day after you To find out have finished your own cycle challenge, you more about the will have the chance London to Paris Tour de to watch the Tour de France cycle ride, call Laura France riders race to on 01462 476707 or visit the finish line on the mstrust.org.uk/ Champs-Élysées.
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Joe and his friends en route to Paris
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londontoparis
G E T INVO LVED
Get involved!
Introducing the MS Trust Christmas Cake Off!
There are lots of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising
Suppor everyon t e living with M S
Send MS Trust Christmas cards Have you bought your Christmas cards yet? There’s still time to order from our great selection - order online or contact us for a brochure. mstrust.org.uk/christmas
Reindeer Rally Run A chance for young children to have some festive fun and raise funds. Organise a short sponsored race and we will provide reindeer masks for the children to decorate. mstrust.org.uk/reindeer
Santa Run, London
Don your apron, grab your mixing bowl, and pre-heat your oven because the Christmas Cake Off is coming to town. Put your baking skills to the test this winter and raise money for the MS Trust. Entering the MS Trust’s Christmas Cake Off is as simple as hosting a cake sale, a baking competition, or even an afternoon tea party with your friends, family, or colleagues this Christmas. As long as there is plenty of cake and lashings of festive cheer! If you’re looking for recipe ideas, be sure to download our fundraising guide where you will find a delicious Chocolate Orange Biscotti recipe from Great British Bake Off’s Kimberley Wilson. Hard work will not go unrewarded and the Cake Off’s top fundraising “star baker” will be awarded a Canon IXUS 275 Digital Camera to take pictures of all their future signature bakes. And, because it’s Christmas, runners up won’t go empty handed either with two £50 Next vouchers up for grabs for commendable bakers.
On your marks, get set, bake! To order your free Christmas Cake Off fundraising kit please call 01462 476707 or visit mstrust.org.uk/christmas-cake-off
Dress up in your free Santa suit and run, jog, walk or use your wheelchair or scooter to get around the 5K or 10K route in Victoria Park on 6 December. mstrust.org.uk/santarun
Monster Ski, Chamonix & Courmayeur Ski or snowboard the height of Mount Everest every day in our exhilarating Monster Ski challenge, taking place from 14-18 March 2016. mstrust.org.uk/monsterski
Alps Trek, France, Italy & Switzerland Trek through 3 countries in the Mont Blanc region from 7-11 September 2016. A challenging, mountainous route with breathtaking views. e. mstrust.org.uk/alps
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/getinvolved
Open Door November 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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15 Linden Muirhead
MS Trust’s Director of Information and Engagement
minutes with
Linden Muirhead is the MS Trust’s Director of Information and Engagement. Over the past year she’s been managing the redevelopment of our website, mstrust.org.uk, which relaunched in October. Here she explains exactly how the new site will work even better and allow us to make more of a difference for people living with MS. Why has the MS Trust developed a new website? The MS Trust first went online in 1997, when the internet was a very different place. People logged on to the World Wide Web via dial-up modems. Even the simplest web pages could take several minutes to appear. And reliable information about multiple sclerosis was still scarce. We were quick to see, however, that the technology was going to change how we published our information. In 2008, we upgraded to a new site, full of new features such as the enduringly popular A-Z of MS, online versions of all our printed information, plus some new multimedia content, including exercise videos and blog posts. Although 2008 feels like yesterday to some of us, in online terms it’s another era. Today over 86 per cent of UK households are online. And almost 80 per cent of us are online every day, compared to less than 50 per cent of people in 2008. Over 60 per cent of us use social media such as Facebook, Twitter or Instagram. And almost 75 per cent of people who use the internet now use it “on the go” – via phones, tablets or laptops. The MS Trust has always aimed to publish information that’s tailored for individual people with MS. That means covering the right subject matter, but also publishing in the way that works for you. In June 2015, for the first time, the number of people accessing our site via a mobile device outnumbered those using a desktop computer. We knew we had to respond to these changes, and we believe with our new website we’ve taken a big
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step in making our information more accessible, with responsive pages that work whether you’re on the bus, looking up information on your phone, at work, using a desktop computer, or at home on the sofa, browsing on your tablet. What else is new? Our new publishing system means we can work much more efficiently. We can publish information quickly, responding to the ever-changing world of MS, and make this content work effectively so you can find it easily when you’re searching the site or following us on social media. The new site is also fully integrated with our database. This means that when you order a booklet, make a donation, organise a fundraising event, buy a Christmas card or subscribe to Open Door, our small team in Letchworth can process your information quickly and accurately. And because we can work more efficiently this means we can focus more of our energy on tailoring information that works for you, rather than handcoding individual web pages!
When the MS Trust was founded the problem we addressed was the lack of reliable information about MS. Today we realise the problem is often that there is so much information it can become unmanageable. We believe with our new website we will be able to develop more innovative ways of helping people find their way through the noise, and find the right information, in the right form, at the right time for them. This will only be possible with your help. Whether you have MS yourself, have a friend or family member with MS, or you’re a health professional with an interest in MS, your feedback can help us develop an even better service. We’d love to know what you think. So visit us at mstrust.org.uk, have a look at our range of MS information, blog posts, newsletters and more, and send an email to opendoor@mstrust.org.uk
What do you have planned for the future? As you’ll have seen from the article in this issue, we’re very excited about MS Decisions, our new tool to help people with relapsing remitting MS weigh up their treatment options. The interactive decision aid that’s only possibly thanks to our new content management system, helps people refine their options and make sense of the confusing amount of information now available.
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Visit mstrust.org.uk Email opendoor@mstrust.org.uk or call 014762 476700
Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs If you order online you help us cut admin costs and focus on making a difference for people affected by MS!
Making Sense of MS
Little blue book (introduction to MS) MS-444 Living well with MS info sheet MS 443
Core pack MS-448 – includes information sheets: • About MS • What happens after diagnosis? • Making the most of appointments • Living well with MS • Sources of information and support • Publications for people with MS from the MS Trust
Books MS and me: a self management guide MS-318
Disease modifying drug therapy MS-90
Talking with your kids MS MS-316
Primary progressive MS
Living with fatigue MS-204
Secondary progressive MS MS-458
MS-352
Managing your Bladder MS-429 Managing your Bowel MS-430 Kids’ guide to MS MS-286
Factsheets Clinically isolated syndrome (CIS) MS-321
Functional electrical stimulation (FES) MS-211
Pregnancy & parenthood MS-134
Secondary progressive MS: an introduction MS-452
Primary progressive MS: an introduction MS-449
Vitamin D MS-314
Cognition MS-144
Pain MS-96
DVD Move it for MS – a DVD of exercises for people with MS MS-245 Delivery details Title
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This means means that for every £1 you donate, we will receive an extra 25p from HMRC at no extra cost to you! Signed Date I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give. Please notify us if you change your name or address.
Return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET Registered charity no. 1088353
Resources on progressive MS from the MS Trust If you’ve recently been diagnosed with primary progressive MS, this information sheet can help with some of the initial questions you might have.
If you want to know more about primary progressive MS, this booklet looks at dealing with diagnosis, managing symptoms and ways of living well with the condition.
If you’ve recently been diagnosed with secondary progressive MS, this information sheet can help with some of the initial questions you might have.
If you want to know more about secondary progressive MS, this booklet looks at dealing with diagnosis, managing symptoms and ways of living well with the condition.
Available to read online at mstrust.org.uk/publications or to order using the form overleaf. We can only continue to provide free, reliable MS information thanks to the generosity of people like you. If you’d like to find out more about supporting our work visit mstrust.org.uk/getinvolved or call 01462 476700