Quarterly newsletter of the MS Trust
Open Door May 2015
Also in this issue Stem cells: behind the headlines
Telling children about MS: when, how and why?
5 steps towards better mental wellbeing
Vaccination and MS: what are the facts?
Welcome to the March issue of Open Door “Everybody talks about relapsing MS and all the treatments now available – when will there be something encouraging for those of us with progressive MS?” This a common comment from our surveys of Open Door readers, and we share your frustration. However, the focus finally seems to be shifting. In this issue of Open Door, we speak to some of the leading figures in MS research, learn about promising new trials and hear how more and more scientists and health professionals around the world are determined to put progressive MS at the top of the agenda. We also hear back about research the MS Trust commissioned into improving support for people going through the transition from relapsing to secondary progressive MS. Improving support for people affected by MS is one of our key goals and has been a particular focus of our work over the last few months. Our theme for this year’s MS Awareness Week was the need for more MS specialists at the heart of MS care. We’re delighted that so many of you got involved in our campaign and helped us spread the word. We’ll be continuing to report on this work leading up to publication of our report on MS specialist care in November. If this is your first issue of Open Door, welcome! We’d love to know what you think and welcome your suggestions for making our newsletter an even better read for people affected by MS. You can email me at opendoor@mstrust.org.uk Best wishes
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News The latest news on the Risk-sharing Scheme, MS cognition research, prescription charges, plus thanks to our supporters Trishna and Kenny
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What’s the truth about stem cell research?
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Research update New research into swallowing problems, cognition and telling children about MS
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The new focus on progressive MS Professor Alan Thompson, Dr Jeremy Chataway and Dr Freya Davies report on the latest research into progressive MS
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Be kind to your mind* Neuropsychologist Jo Johnson introduces her top tips for staying mentally fit
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Your best shot?* The MS Trust info team look at the facts about vaccinations and MS
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Get involved All the latest opportunities to make a difference with the MS Trust
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15 minutes with Tracy Nicholson The MS Trust Research Manager tells Open Door about her fundraising adventure in Vietnam
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 May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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News
Affected by any of these news stories? Call our info team: 0800 032 3839 or 01462 476700 from a mobile 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
M S RE S E A R C H
Positive interim results from Risk-sharing Scheme Avonex, Betaferon, Copaxone and Rebif found to reduce progression for people with relapsing MS Results of the analysis of the six-year data of the Department of Health (DH) MS Risk-sharing Scheme (RSS), published in the Lancet Neurology in April, show that the disease modifying drugs Avonex, Betaferon, Copaxone and Rebif are cost effective and are clinically effective in reducing the progression of the disease in people with relapsing remitting MS. “As administrator of the RSS, the MS Trust has played an important role in ensuring the continuity of the Scheme,” said Pam Macfarlane, Chief Executive of the MS Trust. “We are pleased to have contributed to what has been achieved: ensuring these drugs are available to those who need them and bringing about the growth and development of MS services.”
What is the RSS? The RSS was established by the DH following NICE’s 2002 ruling that four MS drugs (Avonex, Betaferon, Copaxone and Rebif) were not cost effective and therefore should not be available via the NHS. In order to be deemed cost effective, it needed to be demonstrated that the drugs slowed progress of the disease over a longer period of time than had been tested in the initial clinical trials. The DH, working with the four manufacturers, set up the RSS to ensure that the drugs could be made available on the NHS while the long-term cost efficacy was assessed. The Scheme, the first of its kind in the UK, includes a study to observe more than 5,000 people who
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were taking one of the drugs, following them over 10 years. The study aims to monitor levels of disability over this longer period. People with MS included in the study are monitored for changes in their disability compared to an untreated group. Levels of disability rather than relapse rate are the main focus of the study.
What did the study find? After six years of treatment, the RSS group have developed lower levels of disability compared to the untreated group. This indicates that all four drugs are effective in slowing the progress of the disease. The findings are largely in line with expectations about how the drugs would perform over the longer time period. The study looked at levels of disability across the whole group taking any one of the four drugs. Individuals experienced different levels of benefit from the drugs.
Benefits of the RSS The RSS made the four MS drugs available to people with relapsing remitting MS who met the eligibility criteria. Without the scheme, the drugs would not have been available. It has also collected and analysed long-term data from those on treatment, helping to gather the evidence about the benefit of the drugs over time. In addition, the RSS has led to the growth and development of MS services. When the RSS was launched, there were not enough MS specialist
Open Door May 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust
centres, MS nurses or other key MS specialists in the UK. In addition to funding the study, the parties to the Scheme have also made significant investment in MS services across the UK. As a result, there are now over 70 MS specialist centres in the UK, there has been an increase in the number of MS specialist neurologists to prescribe the drugs, a three-fold increase in the number of MS nurses and a significant increase in the number of physiotherapists and occupational therapists with expertise in MS. The resulting improvements in MS services mean that the RSS has benefited everyone affected by MS in the UK, not just those eligible for the four treatments. As well as being administrators of the Scheme, the MS Trust has played a pivotal role in the education and development of MS nursing throughout the RSS. We have also supported services to collect evidence about their value and we continue to campaign to ensure that everyone with MS has access to MS specialist services. Data collection for the RSS will be complete by the end of July 2015 and the final Find out more results from about the Riskthe 10 sharing Scheme and year study should be the four drugs being available in studied at 2016. mstrust.org.uk/rss
For more on all symptoms, drugs and treatments see our A-Z of MS: mstrust.org.uk/atoz
News
M S RE S E A R C H
New study into MS cognition problems Researchers in Nottingham are leading a new study into how people with MS could overcome problems with attention and memory associated to their condition. The Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis (CRAMMS) trial will evaluate the efficacy of new strategies to improve and compensate for these difficulties and aims to improve the quality of life for the participants. The study will be exploring the benefits of using internal memory aids, such as mnemonics (using patterns, words and images to remember details) and external aids, such as diaries, mobile phones and cameras. The researchers will also be looking for other imaginative ways to
help improve memory and reduce forgetting. The study is being conducted in collaboration with Nottingham Clinical Trials Unit, Swansea University, Nottingham University Hospitals NHS Trust, Sheffield Teaching Hospitals NHS Trust, The Walton Centre NHS Trust, and University Hospitals Birmingham NHS Trust. The study is recruiting 400 participants aged between 16 and 69 and will run in centres in Nottingham, For tips for dealing Birmingham, with MS cognition Liverpool, Sheffield and Swansea. problems see For more stayingsmart.org.uk information about the study email nadina.lincoln@ nottingham.ac.uk
Thank you Trishna!
Prescription charges go up in England The cost of prescriptions in England went up by 15p to £8.20 per item on 1 April. The cost of three month and annual certificates remain unchanged. The other UK countries don’t have prescription charges. For more information on prescription charges see mstrust.org.uk/prescription.
Don’t miss John Shuttleworth at the London Palladium There are still a few tickets available for comedian John Shuttleworth’s star-studded show in support of the MS Trust at the London Palladium on 28 June. Book yours now at reallyusefultheatres.co.uk
Thank you to our mystery donor In March we received a substantial donation in the post from an anonymous supporter. Although we can’t express our gratitude in person we’d like to say thank you very much if you are reading this issue of Open Door. Your gift will help us make even more of a difference for people living with MS in 2015.
Marathon man We’d like to thank Trishna for her amazing performance in the People’s Strictly TV programme that was broadcast as part of Red Nose Day back in March! We’re sure we speak for everyone in the MS community in saying she did a great job of
raising awareness of MS. Trishna has been a great supporter of the MS Trust, and helped us develop and promote Making Sense of MS, our new resource for people who’ve just been diagnosed. Find out more at mstrust.org.uk/newlydiagnosed.
Thanks also to fundraising superstar Kenny Smith who ran his tenth London marathon for the MS Trust in April. Kenny has now raised over £26,000 for the MS Trust through his marathon running! Find out more about his superhuman efforts at mstrust.org.uk/Kenny
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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News
B E HIN D T H E H E A DL IN ES
What’s the truth about stem cell research? Recently several of the national newspapers have reported “miraculous” results from stem cell treatments for people with MS. Headlines included “Stem cell reboot has MS patients dancing” and “Miracle stem cell therapy reverses multiple sclerosis”. But what are the facts behind these headlines? The recent press coverage referred to a research article that was published in the Journal of the American Medical Association (JAMA). The newspaper articles also carried several stories based on a small group of people with MS who have received the same type of stem cell treatment at Royal Hallamshire Hospital in Sheffield and at University College Hospital, London. The published study involved 151 people with MS receiving haematopoietic stem cell transplantation (HSCT) which aims to reset the immune system to prevent future inflammation and damage. HSCT is usually an aggressive and risky procedure that requires the immune system to be killed off with chemotherapy and sometimes radiotherapy prior to stem cells being transplanted. This study investigated a less intense form of HSCT treatment, making the person less vulnerable to infections and complications. Following treatment, people were monitored
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regularly for an average of two-and-a-half years (some for only six months, others for five years). The researchers reported significant improvement in disability scores and reduced disease activity in a proportion of those with relapsing remitting MS with disease duration of ten or fewer years. EDSS scores improved from an average of 4 before treatment to approximately 3 six months after treatment. However improvements were not seen in people with secondary progressive MS or those who had lived with MS for longer than 10 years. Additionally as only 27 participants were assessed at the five year point, it was not clear how long the improvements could last. The authors concluded that the results were very encouraging for a subgroup of people with MS, but these were preliminary findings from a study that had no control or comparison treatment group. The findings require confirmation in randomised trials, which they are now planning.
Open Door May 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust
News How was it covered by the media? Writing about stem cell research in the March issue of Open Door, Professor Neil Scolding noted that newspapers need to sell copies and do not always give an accurate or informative account. While there is great potential in stem cell therapies, the coverage of this research in the newspapers: • did not make clear how intense and risky stem cell procedures can be • did not mention that this treatment worked in a small subgroup of people with RRMS only; many of these had not responded to other drug treatments and had continued to have relapses – it may be that the improvements seen were as a result of them continuing to recover from earlier relapses and not as a consequence of HSCT • gave the impression that the treatment is available on the NHS, whereas it is still an experimental treatment going through clinical trials • used the words cure and reverses, giving an impression of complete recovery; improvements were seen, but these were partial and in a subgroup only
Coverage on the websites of the Sunday Times and the Daily Telegraph
What did people with MS think? Many people with MS contacted the MS Trust information service as they had either seen some of the coverage or had an excited relative contact them to say there was now a cure available. For many it had raised expectations and led to some
difficult conversations between them and their loved ones. In response to coverage on Good Morning Britain, Rachel Hurst Pole wrote in our Facebook group: “I am quite annoyed and disappointed with the information given. Vital results and information was not discussed. Do you realise how heartbreaking it is for parents to have to explain to their young children who were getting ready for school when the programme was on that no, sorry, mummy/daddy isn’t going to be cured with this treatment. This is also very painful for other relatives and friends to hear”.
How can I get this treatment? Interest in stem cell research is high and, unfortunately, as the trials are only small scale at the moment, any opportunities are always massively over-subscribed. Stem cell treatments are being offered commercially on the internet, as are so-called clinical trials where the participants are expected to pay for treatment. These sites should be approached with great caution. The MS Trust is not currently aware of any ethical, authorised clinics using stem cells to treat MS outside clinical trials. The same researchers involved in the study reported in the press are currently recruiting for a follow-on study. This study will involve 110 participants with relapsing remitting MS who have not improved despite treatment with standard disease modifying therapies. The full details of the trial and the criteria that participants should meet can be read at tinyurl.com/MS-stem-cell The team in Sheffield is the only UK location taking part in this study and are aiming to recruit a maximum of one person a month. If you meet the criteria and are interested in taking part in the trial talk to your neurologist, who could refer you to Professor Sharrack or Professor Snowden in Sheffield to be considered.
Who can I contact for further information on research? If you see a story relating to MS research and are not sure what to make of it, contact the MS Trust and we can help you find out more.
Call us on 0800 032 3839 (01462 476700 if calling from a mobile) or email infoteam@mstrust. org.uk
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Research update M S A N D S WA L L OWIN G
How common are swallowing problems in people with MS? This study looked at studies of swallowing in MS to find out just how common this problem is Authors Guan XL et al Title Prevalence of dysphagia in multiple sclerosis: a systematic review and meta-analysis Journal Neurological Sciences 2015 Feb 3 [Epub ahead of print]
The study
The results
The researchers examined 15 research studies that focused on swallowing problems in MS. The studies included a total of 4,510 people with MS. The studies were grouped together based on how the swallowing problem was diagnosed. In one group swallowing was assessed using objective measurements such as a clinical examination from a specialist or a test such as videofluoroscopy, where a recording is made of a moving x-ray while the person is swallowing. In the other group swallowing was assessed and diagnosed using questionnaires to detect problems.
The review found that at least one third of people with MS had some sort of swallowing difficulty, although the number of people with MS diagnosed with a swallowing problem was different depending on the method used for diagnosis. For people diagnosed using questionnaire, 36 per cent were found to have a swallowing problem. However, for those diagnosed using a special test or by physical examination by a health professional, 81 per cent were found to have a problem.
To find out more about swallowing problems in MS see mstrust.org.uk/ swallowing
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What does it mean? The authors suggest that their results should be viewed with caution as the studies were very varied and the number of people with MS diagnosed with a swallowing problem was different depending on the method used for diagnosis. They suggest that further studies would be needed to gain a better understanding of swallowing in MS, but their analysis helps to highlight how common swallowing problems can be and raise awareness.
Who can help with swallowing problems? Difficulty swallowing (also known as dysphagia) can happen in MS when damage in the central nervous system affects the coordination of the various muscles involved. If the processes involved in holding food in the mouth, chewing and swallowing are not synchronised, a number of different problems can occur including coughing, spluttering and choking. There are several health professionals who can help if you are having problems swallowing. A speech and language therapist can assess swallowing and provide advice on posture, consistencies of food, amounts, eating environment and possible exercises to help. If you have problems swallowing it can also be a challenge to get enough energy and nutrients from food, so a dietitian can suggest types of food and ways of preparing food that makes them easier to swallow. You might need a referral from another health professional to access some of these services. So if you have been having trouble eating or swallowing, speak to your MS nurse, neurologist or GP, and they can arrange an assessment.
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Research update M S A N D C OGN I T I ON
Does tailored treatment help to improve cognitive symptoms? Problems with aspects of thinking such as memory, concentration or problem solving are common in MS. This study compared tailored and general treatment to see which is the most effective Authors Mattioli F, et al Title A RCT comparing specific intensive cognitive training to aspecific psychological intervention in RRMS: The SMICT Study Journal Frontiers in Neurology 2015;5:278
The study 41 people with relapsing remitting MS were assessed using the Italian version of Rao’s Brief Repeatable Battery, which is a collection of tests that examine memory, recall, attention, processing speed and language. All participants had a problem with at least one of these cognitive areas. Participants were randomly allocated to receive either a treatment which was specifically designed to help with the cognitive problem they were experiencing or a general psychological intervention. The tailored approach included help with planning and memory training. The general intervention involved a conversation with a psychologist about themselves and their life. Treatments lasted for one hour, twice a week, for 15 consecutive weeks.
The results The study found that specific treatment and cognitive training significantly reduced the cognitive problems the participants experienced. One year after completing the treatment,
approximately 40 per cent of the participants who had the specific treatment had completely recovered from their cognitive problems. In the group that received general treatment, only 5 per cent completely recovered and most of the participants in that group saw their cognitive problems get worse over time. The only difference between the groups was the type of treatment they received, as their ages, gender split, number of years in education, number of years since MS diagnosis, number of relapses in the past year and levels of disability were all very similar.
What does it mean? The study shows that an intensive course of treatment that is specifically tailored to help with the cognitive problem the person with MS is experiencing is more effective than a general treatment. The authors conclude that further research is needed to determine the best location for the treatment to be carried out and the optimal length of the treatment, as a shorter period of treatment may work just as well.
Managing cognitive symptoms Cognitive difficulties is the term used to describe a range of problems with slowed thinking such as poor memory, attention span or concentration and difficulty following complicated instructions or problem solving. Cognitive symptoms are common in MS but may not be recognised. Management of these symptoms involves finding strategies that minimise the difficulty. For example, if you have trouble remembering where you’ve put your car keys, always putting them in the same place will help. You can find more information, tips and strategies for getting around cognitive symptoms on the StayingSmart website. StayingSmart was developed by the MS Trust in partnership with Professor Dawn Langdon, a neuropsychologist at Royal Holloway University of London. The Tips and Tricks section includes ideas shared by people living with cognitive symptoms, while the Gadgets and Gizmos section features readily available equipment that may be helpful. Find out more at stayingsmart.org.uk
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Research update M S IN T H E FA M I LY
Telling children about MS: when, how and why? Research has shown that the ability of children to adjust to having a parent having MS depends partially on how much they know about MS. This study interviewed families to find out what they felt they needed when one parent is diagnosed with MS Authors Nilsagård Y, Boström K Title Informing the children when a parent is diagnosed as having multiple sclerosis Journal International Journal of MS Care 2015;17(1):42-8
The study
What does it mean?
23 people from ten families took part in the study. Nine of them had MS, five of them were partners and nine were children. In semi-structured interviews they shared their experiences. The researchers examined the answers given during the interviews and identified general themes and opinions.
The study shows that providing appropriate information is important to ensure that people diagnosed with MS and their families feel informed and supported. The authors suggest that without proper information, children can develop an inaccurate picture of MS and sometimes even believe that they are partly responsible for the onset or the progress of their parent’s condition. The authors conclude that their results suggest that health professionals should ask what information is needed at each visit to ensure that families are kept up to date, and also suggest that parents consider taking their children to appointments to help them better understand MS.
The results The main finding of the study was that parents with MS, their partners, and children wanted to be well informed about the condition. The adults said that at the time of diagnosis, they found it difficult to be the one who told the children or others about MS. They found it difficult to find the right words and explanation. All said they had found books specifically designed for such conversations very useful as a tool for talking to their children and reassuring them. Many of the participants felt that being present in medical appointments was very useful for the whole family. Children often felt reassured to see what their parent was experiencing when they saw their nurse, doctor or physiotherapist.
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Talking with children about MS As well as being a person with MS, you may be a partner, parent, brother or sister, friend and work colleague, among other roles. After diagnosis, choosing whether to tell other people and if so, when to tell them, and how much to tell them, can be a complex decision as well as a very personal one. Telling children and discussing the changes that MS brings can be particularly challenging for some people. Likewise children can sometimes find it difficult to explore their feelings about MS and how it affects them. The MS Trust has developed several resources to help families talk about MS and help children understand MS and also realise that they are not alone in the feelings that they may be experiencing: Talking with your kids about MS (for parents), Kids’ guide to MS (for 6-10 year olds) and Young person’s guide to MS (for 10-16 To find out more visit year olds).
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mstrust.org.uk/family or order the publications on p23.
P ro g res sive MS
The new focus on progressive MS There have recently been encouraging developments in understanding and treating progressive MS. In this issue of Open Door we report on MS Trust research into the experience of transition between relapsing and secondary progressive MS (p12) and hear from Dr Jeremy Chataway on his research into the effects of three drugs on people with secondary progressive MS (p14). To introduce the feature, Professor Alan Thompson, who is co-chair of team that coordinates the International Progressive MS Alliance’s research programme, explains how the focus has changed
Why have we seen comparatively little research into progressive MS until recently? The advances in the treatment of relapsing MS have been quite extraordinary. This is because we have drugs that suppress or modulate inflammation. What is much more difficult is how we stop neurodegeneration – that is, the destruction of nerve cells. The approaches you might take are several. One might be to attempt repair the damaged protein around the nerve cells – that is, stimulate remyelination. Another might be to protect the nerve axons so they don’t get damaged. But it’s a much more complicated scenario, which is the main reason why we have seen so much progress in relapsing MS but relatively little in progressive MS. I should also say though that the focus of research activity and the pharmaceutical industry has been very much on relapsing MS over the last 20 years. It’s now important to change the focus, or at least move it so that it now includes progressive forms of MS.
What do we need to do to find disease modifying treatments for progressive MS? We need to think about trial design: can we think about new and different ways of designing trials that don’t take a very long time to reach conclusions? Can we
identify new clinical outcomes and can we include new biomarkers that give us some insight into the underlying neurodegeneration? For me most important, if we are to develop new treatments, is to get a better understanding of the mechanism underlying neurodegeneration. It’s only by understanding the underlying mechanisms that we can identify new targets for treatment. And it’s only by identifying new targets that we can find new ways of stopping progression. An understanding of the underlying mechanism is critical.
How is the International Progressive MS Alliance working to change things? The International Progressive MS Alliance was set up with a very clear goal: to deliver treatments for progressive MS and to improve symptomatic management and rehabilitation. It’s a very simple goal, but a very challenging one. We all felt that it is essential to raise the profile of progressive MS. It is important to coordinate research activities worldwide and to bring together the key international figures in the field so that they will work together. So what we need is to identify the blocks to treatment and lay out a research programme that will address those blocks over time. For example, one of the blocks is identifying targets for treatment. Another is to develop new
clinical trial design and to identify new outcome measures that can be used within those trials – both biomarkers and clinical measures. Another is to move those trials on into bigger, more definitive studies. And finally to address and advance the areas of rehabilitation and symptomatic management. We’ve had an overwhelming response from the international MS community, which is now working together in a way that it had never done before. We have a single scientific advisory committee and a single international review committee. We’ve set up several research calls. Our first call was for small grants that stimulate interest and engagement, and that’s been a huge success – involving over 20 countries. Now we’re moving onto a much bigger research call which is looking at major collaborative networks. These will attract worldwide To find out more collaborations, which we about the work of the anticipate will result in International Progressive transformative research MS Alliance visit that will make a huge progressivemsalliance.org difference to people with progressive MS.
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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PR O G RE S S I V E MS
Improving support for people transitioning to SPMS Finding that the pattern of your MS is changing from relapsing remitting to secondary progressive can be a distressing experience. Many people report that it feels like being diagnosed with MS all over again. How can we improve the support available to people going through transition? Two years ago we commissioned a team of researchers at Cardiff University to explore people’s experiences and look at ways support could be improved. Dr Freya Davies explains what they found out
What did we do? We interviewed people with MS, their carers and members of the MS team to find out more about their experiences and suggestions for improvements. We also held two group interviews with people with MS and carers. Most of the people with MS we interviewed had experienced their MS changing from relapsing remitting to secondary progressive.
What did we discover? Discussing SPMS People found out their MS had progressed in different ways. Some noticed a change themselves and confirmed their own suspicions by discussing this with the MS team. Sometimes a neurologist or nurse discussed the transition in a clinic appointment. Some people only found out by chance when they overheard a conversation or read a letter written about them. Not everyone felt labelling their MS as progressive made much difference to them. Whatever their MS might be called they were already getting on with adapting to the day to day challenges of life. “I suppose at my stage it doesn’t really matter whether I am relapsing remitting or secondary progressive […] it is what it is
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sort of thing. And I’ve learnt to manage it as best I can” Some people noticed the transition affected them more. Finding out without enough explanation of why they now had SPMS and what that meant for them often left people confused. A lack of information could mean people tended to focus on the ‘worst-case scenario’. Many people wanted an explanation about SPMS during a face-toface appointment with the MS team. They also liked the idea of some written material to refer to after their appointment and the chance to meet other people coping well with SPMS. “I understand that it’s secondary progressive now. I understand it could get a lot worse in the future, I understand it could stay the same for the rest of my life so, you know I’m pretty clued up – well nobody knows how it’s going to go, I’m well aware of that.” The neurologists and MS nurses we interviewed told us they were often unsure of when to broach the topic of progression with their patients. They often only brought up progression once they were very sure it had happened, which was often some time after the progression first began.
Support from the MS team Many people felt very satisfied with the care they had received, particularly from their MS nurse. Being able to build a relationship with an MS nurse and knowing they would provide ongoing support was highly valued. Some people found hospital appointments could be frustrating and didn’t feel like they gained much from attending. They wanted appointments to be more focused on the things that they felt were important to them, and not necessarily the things that were important to the doctor. “I think when I do go to see him [neurologist] it’s so brief, and the next thing you know I’m going out the door and he’s seeing me again the year after and I’m thinking ‘what was that all about?’”
Support from other sources The healthcare team was just a small part of the support network people with MS and carers developed over time. Other important parts of this support network included the relationship between people with MS and their carers, their wider social circle (family, friends and colleagues) and peer support (from other people with MS or carers). People with MS and
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P ro g res sive MS carers told us about the things they did to help themselves. Keeping active both physically and socially was important to many people. It was felt that services to promote maintaining activity, such as local exercise schemes, should be expanded and better promoted. Access to information was also important but not everyone wanted the same amount of information at the same time. People liked information to be simple and reliable. A variety of different formats were suggested including websites, emails, leaflets and face-to-face interactions. Where people wanted to get help and support varied, so we suggest it is very important to provide different options to suit different people. “I maintain a good attitude you know, yes something could happen in the future but I live today, in the present, and I do a lot of yoga. So that keeps me sort of mobile. It keeps what I’ve got going, going, you know. It’s important to keep what you’ve got.”
Support for carers Everyone interviewed recognised the important role that carers play and some felt that more support targeted towards carers should be available. Some carers felt that around the transition their caring role was manageable as long as the person with MS was well supported. Many of the carers we interviewed had never thought about or looked for help for themselves.
Support for health professionals Some symptoms experienced by people with MS were more difficult for health professionals to help with than others. In particular, health professionals felt more
psychological support for people with MS would be useful. They were also keen to try to promote the self-management of MS among their patients. They noticed that symptoms like fatigue and low mood could sometimes make it hard for people with MS to self-manage and wanted to learn strategies to provide more help.
How will this research help people with MS? The research has helped us to better understand how support during the transition phase could be improved. It is clear that a ‘one size fits all’ approach is not going to work well and that services need to be more flexible to ensure information and ongoing support are delivered in a way that suits each individual. For people with MS it is important to have clear reliable information about SPMS. Being well informed earlier on might help people gradually adjust to a change in their disease course. We need to encourage health professionals to make sure they check what information people with MS actually want. The transition can be seen as a good opportunity for people with MS to take a more active role in setting the priorities of their care. Although doctors and nurses may be the experts on medications, people with MS are the experts on their own lives, challenges and priorities. Specific services are likely to be particularly beneficial to people around the transition, including help to keep active, to develop self-management skills, and to receive psychological support. Focusing on designing these services, and training professionals to deliver them should help to improve the quality of life of people around the transition.
What is MS transition? The change between types of MS is not a sudden switch but a gradual process where the relapsing and progressive patterns overlap for a while. There is often a reluctance to talk about progression, by both the doctor and the person with MS, and the discussion is often postponed. Sometimes there can be differences of opinion. The person who is living with MS may feel their MS is progressive. The neurologist, who is observing it in a clinical setting, may take a more cautious view and prefer to monitor symptoms over a period of six months or more. It’s not unusual for people to say that when they were told they had secondary progressive MS, the information was given fairly casually and with little time for discussion. Yet the news can bring up similar feelings to when someone was first diagnosed and can be more upsetting if little is offered to help them.
The effect of words It is not uncommon for people to think that progressive MS will be worse than the relapsing type. The medical terminology is probably unhelpful in this. Relapsing remitting and secondary progressive simply describe the clinical nature of MS, not the life of a person living with the condition. People with either form will have better or worse experiences depending on their particular symptoms and the impact these have on their activities. The fact that one form follows the other does not necessarily mean that MS has become worse. To find out more about secondary progressive MS see mstrust.org.uk/spms or order the book on p23
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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PR O G RE S S I V E MS
“I think it’s a golden time for progressive MS research...” Dr Jeremy Chataway is a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London and has been involved in MS research for many years, most recently into the effects of simvastatin on progressive MS. He’s now leading on the MS-SMART trial, looking at the effects of three drugs which are already used for other conditions on people with secondary progressive MS. The trial is recruiting throughout 2015. Dr Chataway spoke to Open Door about the state of progressive MS research, and the promise of his current research
At a recent MS conference, Dr Robert Fox said that within 10 years he thinks we will be able to treat progressive MS in the same way we can now treat relapsing MS. Do you agree? I certainly think it’s a golden time. Over the years, the MS community has achieved a number of drugs that control relapse rate, ultimately quite effectively. That has allowed everyone’s attention to fully move onto what was always the major problem: progressive MS, in whichever form that progression is. And we have a developing pipeline of drugs which I hope will come through and will hopefully prove themselves in final phase trials. I would say that it’s a different time from previously.
Why has there been so little research into progressive MS until relatively recently? I think there are a number of reasons. The relapsing phase is the inflammatory phase, which has always responded to steroids. So we knew roughly what type of drug we’d need to control the relapse rate or the inflammatory state. Our dozen
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or so drugs are, if you like, more advanced derivatives of that. The fundamental biology and mechanism of the inflammatory stage is much better known. Whereas in progression it’s still fairly rudimentary, and I think a major piece of work does have to be done. As we understand the biology more, that will allow us to obtain more and more drugs that have an effect on the progressive phase.
Why are you choosing to look at drugs that are already available? A big piece of work was done, primarily by the Edinburgh group, looking at all reports of all drugs that could have a role in progressive MS, but which also could have some synergistic effects on other degenerative conditions – for example, Alzheimer’s or Parkinson’s or motor neurone disease. A big sweep was carried out, and it boiled down ultimately to about seven drugs. It just so happens that a number of these drugs are what we could call ‘repurposed’, that is, they’ve been used in other conditions but we think they have a common pathway or mechanism which will allow them to be helpful in progressive MS. And the advantage of these sorts
of drugs is that we know a huge amount about them.They have been tried in normal medical practice in millions and millions of people, so their safety profile is very well understood. So that’s how it came to be that we are trialling three repurposed drugs.
What makes you think they might be effective in MS? Research into small groups of people, particularly following detailed MRI scans, have shown that there’s a good signal or hint of effect. The MS-SMART trial allows us to ramp the advantage of up the number these sorts of drugs is of people taking that we know a huge the drugs by a amount about them. factor of 10. This means we can look in a much more detailed way at scans, other investigations and also the effect of the drug on the actual person. For example, amiloride, which has been looked at extensively by the Oxford group, seems to block a particular calcium channel in the brain, and we think that this could be helpful at this stage of the disease. When they did their work they showed that applying that drug to a group of people
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P ro g res sive MS with progressive MS reduced the rate of brain shrinkage in particular parts of the brain. That’s the primary effect we’re after. Can we reduce the rate of brain shrinkage, or atrophy, which occurs in MS a little bit more than normal? We know that that’s related ultimately to disability or how the person is.
What are the advantages of trialling three drugs in parallel? We spent a huge amount of time over a five year period working with a variety of experienced statisticians, trying to develop more efficient trial designs. Because unfortunately if you do it one by one by one we’ll be here for a long time. So what we’re trying to here is have three bites of the cherry. There are three active drugs: A, B and C and a dummy drug. And a person is ‘randomised’ as they call it, to one of those four arms. So in this way we can look at three drugs simultaneously and see if there’s an advantage over the dummy drug. This model has been used very successfully in oncology. It’s quite a standard approach in cancer work, and of course they’ve been immensely successful. So we’re trying to borrow from a successful model and apply it into neurological science, into a very difficult part of the arena. We hope this will be the first of many attempts to do this kind of work.
How long will recruitment last? Recruitment will take place through 2015. So we have 440 places in the trial, and they will be recruited from 10-15 sites in England and Scotland over this one year period. People
are in trial for two years. The last patient recruited on New Year’s eve 2015 will be in trial for two years after that, which will take us to end of 2017. And the analysis will take a good six months after that. So we would hope to begin reporting results in 2018.
If the trials are successful, how long until treatments are available? I think it depends on the extent of the results but I think if we see positive results it tells us a number of things. It first of all illuminates what’s going on in MS. If a particular drug is successful then it must be interacting in a part of the process that’s important in progressive MS, and turning it down or switching it off. So it will illuminate understanding, and then we would have discussions with the regulatory authorities on how to take it forward. And that’s a complex process, and licensing and labelling is very much a discussion in progress. It would need to go to a final individual disability led stage.
Here we have repurposed drugs that are generally out of patent and are being tried for a different indication in this phase 2 trial. So then I think there’s an evolving discussion about how to handle these drugs if they are found to be, or show good hints of being, effective in their trials. That’s an ongoing discussion with the regulatory authorities.
Take part in the MS-SMART trial If you’re interested in taking part in the MSSMART trial visit www.ms-smart.org
Trial participants should • have secondary progressive MS • be able to walk at least 20 metres (with the support of two crutches) or up to 500 metres without help • be age 25-65 (inclusive) You can’t take part if you are currently taking a disease modifying treatment for MS or if you’re taking an SSRI anti-depressant.
Is the process made more complicated by the fact that the drugs are already being used for other conditions? This is a very interesting point and it’s starting to be debated. It does and it doesn’t. If a drug is owned by a drug company, they would own the licence to that, and they would fund the research and development programme. But then when the drug becomes available it would have a certain cost attached to it – and that may be a considerable cost. That’s the traditional model for a drug that’s owned by a pharma company.
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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M E N TA L HE A LT H
Be kind to your mind We often focus solely on our physical health but looking after our mental health is also vital to our sense of wellbeing. Jo Johnson, a consultant neuropsychologist with a special interest in MS, introduces practical steps you can take to improve and maintain your mental wellbeing
MENTAL HEALTH LIKE physical health is determined by a number of factors including genetics, life events and also thoughts and actions. As MS can affect regions in the brain that control emotions, people living with MS may also experience changes in mental health that are neurological rather than the result of anything that is happening in day to day life. Research suggests at least half of people with MS will experience mental health symptoms at some point, most commonly depression or anxiety. People with a family or personal history of these symptoms are more vulnerable. When you see your MS nurse, it may be worth discussing any previous experiences of mental health symptoms or instances of mental health problems in your family. It is common for people to experience symptoms of low mood and anxiety in the first couple of years after a diagnosis of MS, with often very intense feelings in the early months. From a young age most people have an idea of how they want their life to progress. This might include having long-term partners, children, financial commitments and career paths. A diagnosis of MS introduces uncertainty about the future and people often experience feelings of loss and grief at the thought of losing the life as they had planned it would be. Feelings might include sadness, tearfulness, disappointment, anxiety, anger and even guilt. It is not surprising to feel like this at times and for many these feelings may come and go as life moves forward. However, for some, they can persist and become a self-perpetuating state of low mood that starts to interfere with daily life. It helps to acknowledge and express these feelings. If you find it hard to talk about this to other people, keeping a journal of your honest thoughts and feelings can be beneficial. The good news is there are things you can do to improve your mental health and to stay mentally well whatever your situation or diagnosis.
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What can you do about it? The first step is to realise that your mind requires care in the same way as your body. If for the whole of 2015 you eat high fat and sugary foods, smoke and don’t take any exercise, there is a good chance that by 2016 you will be less physically healthy The good news is than you are now. This principle is there are things you the same for mental health. can do to improve your The first step is to learn what can mental health and to be done to improve mental health. It stay mentally well then requires a conscious decision to prioritise and practise what helps. It’s important to note that if you feel low or anxious most of the time, have trouble sleeping and have little or no interest in life, you need to speak to your GP as you may need medication first to improve. If your symptoms are more variable or you are on medication, research shows that looking more closely at how you think and what you do can be as much help as taking pills. Here are five examples. MANAGE YOUR THOUGHTS
BAD THOUGHTS
REMEMBER TO BE GRATEFUL
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SPEND LESS TIME IN YOUR HEAD
GOOD THOUGHTS
TRY EXERCISE
BE KIND TO YOURSELF
M en tal he a lth
Jo’s top tips for staying mentally fit From changing your internal soundtrack to focusing on the here and now, here are five ways you can maintain your mental wellbeing
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Manage your thoughts
Everyone experiences thoughts that are unhelpful or upsetting from time to time. Be aware of these thoughts and their impact on mental health. Last year I published a book called ‘Shrinking The Smirch’. In the book we ask the reader to imagine their thoughts are being played on an imaginary iPod. Become aware of how much of the time you are listening to your mental iPod and how often it is playing unhelpful tunes. These could be to do with your MS or may be about other issues in your life. Playing those tunes over and over will make you feel sad, upset and fearful and make it harder to feel mentally well. Managing your thoughts needs practise. TRY THIS
Notice when you are listening to unhelpful thoughts and then imagine tugging out your mental iPod as if it were playing music you hate. A useful website for information on managing your thoughts and negative feelings is getselfhelp.co.uk
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Learn to live in the now and spend less time in your head
Research shows that staying in the present moment helps mental health. Some people call this mindfulness but it just means concentrating on what is right in front of you instead of being on automatic pilot. Most of us spend a lot of time caught up in our heads – regretting the past, fearing the future or just trying to manage the challenges of the day. Getting hooked up into our heads causes stress but it also can mean that many moments of pleasure pass by unnoticed because we aren’t paying attention. TRY THIS
Take a moment to focus on what is happening in the here and now. What can you smell or see? Are you hot or cold? Tense or relaxed? For more on mindfulness see mstrust.org.uk/mindfulness
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Keep a gratitude diary
When life is tough it’s easy to lose sight of the good things. Research shows that recognising the good things that are happening strengthens the ability of the brain to focus on positive things. TRY THIS
At the end of each day, write down five things that have gone well or for which you are grateful.
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Treat yourself with compassion
When you feel low, do you treat yourself like you would treat a friend and offer yourself support and understanding? Or do you tend to be a self bully and become harsh and critical? Unsurprisingly people who can show themselves kindness feel mentally better. TRY THIS
Be aware of what you say to yourself and try to be more friendly.
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Think about food and mood and exercise
There is good evidence that a diet containing high sugar and fat, as well as too much alcohol, makes people more depressed and anxious. It is also true that a little regular exercise is better than antidepressants for lots of people. Often people set themselves up to fail by setting unrealistic goals around food and exercise. TRY THIS
To read more
Try making small, achievable about living well changes that are more likely with MS visit to succeed – for instance, mstrust.org.uk/livingwell giving up butter on a or order the factsheet on p23 Tuesday, parking the car For more about Jo’s work visit slightly further from the her Facebook community school and walking the last bit or swapping one at facebook.com/ cup of coffee for water. If you shrinkingthesmirch can make even tiny changes but keep them up you will notice benefits to your body and your mind.
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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VAC CI NAT I O N AND MS
Your best shot? The issue of vaccinations and multiple sclerosis raises a number of questions for people with MS. Are the treatments safe? Do they work in MS? Are they affected by other treatments? Here we look at some of the more frequently asked questions
What are vaccines?
Vaccines and the risk of developing MS?
When the body is infected by a virus, bacterium or other invader, the immune system responds to fight it off. Once an infection is over, some of the antibodies developed to fight it remain in the immune system. This creates an ‘immune memory’, which means that should the same organism invade again, the body is already prepared to combat it. This is why diseases such as mumps or chicken pox usually only occur once. Vaccination uses this idea to forewarn the immune system. A small amount or part of the organism that causes the infection is injected into the body so the immune system mounts a reaction against it to produce antibodies. When the person comes into contact with the real disease in the future, the immune system will recognise it and attack it with the antibodies, preventing infection. There are two main types of vaccine: killed and live. Killed vaccines, such as the flu jab, use dead or inactivated organisms, which the body can still recognise as the disease causing invader but cannot cause the illness. Live, or attenuated, vaccines, such as MMR, contain organisms that have been weakened so they cannot cause disease in a healthy people. As a live vaccine is the closest thing to a natural infection it produces a strong immune response and often gives lifelong protection.
In the past there has been concern over the potential effect of vaccinations on the risk of people developing MS. Research has failed to find evidence to support these concerns. In 2011, researchers reviewed previous studies on a range of vaccines. They found that the risk of developing MS remained unchanged after vaccinations for BCG (which causes tuberculosis), hepatitis B, influenza, MMR (measles, mumps, rubella), polio and typhoid fever. Their results suggested that diphtheria and tetanus vaccination may even be associated with a decreased risk of MS. A US study from 2014 looked at the vaccination records of more In the vast majority than 4,500 people, with particular of cases the benefits interest in hepatitis B and the of vaccination greatly human papillomavirus (HPV) outweigh any risk vaccines. This found no increased risk of MS in the three years following vaccination. A Scandinavian study published in January studied the records of almost 4 million women and found that the risk of MS was no greater in those who had had the HPV vaccination, which protects against cervical cancer, than in those who had not.
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Vacci n ati o n a nd MS Do MS drugs affect how vaccines work? A review of previous research looked at how the disease modifying drugs affected the effectiveness of the flu vaccine. For people on one of the four beta interferon drugs (Avonex, Betaferon, Extavia and Rebif) or teriflunomide (Aubagio) the vaccination protected them against flu. The evidence for natalizumab (Tysabri) was mixed with differing results from two trials. Small studies of glatiramer acetate (Copaxone) and fingolimod (Gilenya) suggested that the vaccine was less effective, though the numbers of people involved was too low to be certain. A more recent study of fingolimod found that almost half were protected by the flu vaccine compared to three quarters of people not taking the drug.
Should people with MS have vaccinations? While there are rare complications with vaccinations, the risk of these occurring are the same for people with MS as in the general population. On the other hand, there is strong evidence that infections can worsen MS symptoms and increase the risk of a relapse. There has been controversy around the use of the hepatitis B vaccine with occasional case reports of people experiencing symptoms or a relapse after the injection. This risk has not been seen in larger scale studies, which suggests that hepatitis B vaccination is probably safe for most people with MS. In the vast majority of cases the benefits of vaccination greatly outweigh any risk and people with MS are encouraged to have any recommended vaccinations, such as the annual flu jab. There are a few exceptions to this guidance. People who are experiencing a relapse may be advised to wait until this has passed before having a vaccination. Similarly, someone with an infection may need to wait until this has cleared up. As there is a risk that a live vaccine may still cause symptoms or develop into the disease, these are generally not recommended for people with MS, particularly those on drugs that supress the immune system such as natalizumab (Tysabri) or steroids. If you are not sure if the vaccination you are being offered is live or not, talk to your doctor or your MS nurse.
References Farez MF, Correale J. Immunizations and risk of multiple sclerosis: systematic review and meta-analysis. Journal of Neurology 2011;258(7):1197-1206. Farez MF, Correale J. Yellow fever vaccination and increased relapse rate in travelers with multiple sclerosis. Archives of Neurology 2011;68(10):1267-1271 Langer-Gould A, et al. Vaccines and the risk of multiple sclerosis and other central nervous system demyelinating diseases. JAMA Neurology 2014;71(12):1506-1513. Scheller NM, et al. Quadrivalent HPV Vaccination and Risk of Multiple Sclerosis and Other Demyelinating Diseases of the Central Nervous System JAMA 2015;313(1):54-61. Pellegrino P, Carnovale C, Perrone V, et al. Efficacy of vaccination against influenza in patients with multiple sclerosis: The role of concomitant therapies. Vaccine 2014;32(37):4730-4735. Kappos L, et al Randomized trial of vaccination in fingolimod-treated patients with multiple sclerosis. Neurology 2015;84(9):872-879. Coustans M, et al. Demyelinating disease and hepatitis B vaccination: survey of 735 patients seen at an MS clinic. Neurology 2000;54(suppl):A165-166. Confavreaux C, et al. Vaccinations and the risk of relapse in multiple sclerosis. New England Journal of Medicine 2001;344:319-326.
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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GET I N V O LV E D
Thank you for making our work possible Did you know that we received £1.1 million last year from people like you raising funds and donating?
THAT’S EQUIVALENT TO what we spent in the same year providing information, campaigning on the things that matter to people living with MS and funding research to improve services, treatment and support. Your support really does make a difference for everyone who contacts the MS Trust. Every person who wants to know how they can manage a new symptom, choose between treatment options, find better ways to cope at work or support a family member who has been recently diagnosed. We can only be there at the end of the phone or online thanks to you. When we talk about fundraising, we’re not just talking about extreme challenges and activities like running, skydiving and trekking. Last year we received £2,824 thanks to people who remembered to visit our page of shopping links (mstrust.org.uk/shopping) before they shopped
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online with stores like Amazon, Sainsbury’s and John Lewis. That’s enough to run our freephone MS information service for a week. We rely on lots of generous people who take time out of their busy lives to do something – anything – to help people whose lives are affected by MS. That might be getting sponsored for a personal challenge like giving up chocolate We for a month, selling homemade jam or rely on lots of greetings cards, or holding a charity generous people event like an open garden or pub quiz. who take time out of Almost 3,000 people supported us in their busy lives to do 2014 by raising funds or donating and something – anything we are extremely grateful to every one – to help people of them. You can read some of their affected by MS. stories online in our Fundraising Hall of Fame (mstrust.org.uk/halloffame). At the end of last year, Jennifer Cooper’s Rainbow group raised £180 by holding a
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Get i nvolve d sponsored obstacle race as part of our Reindeer Rally campaign. Jennifer, who lives in Bradford, told us that she wanted to support the MS Trust because her family had found our information useful when her mother was diagnosed. She said, “My mam was diagnosed with MS eight years ago after living with it for more than twenty years undiagnosed. When we first found out it was hard to come to terms with because we knew nothing about it, but the hardest thing was telling my then eight year old niece and six year old nephew. “This is where the MS Trust came in. The literature they supply is amazing and made it easier to explain to my niece and nephew what was happening to their Grandma. When the opportunity came for me to be able to give something back I had to jump at the chance. I knew my Rainbow unit would thoroughly enjoy the Reindeer Rally. We can’t wait to do it again next year.” Thanks to Jennifer and the children at Rainbows, we can now provide copies of our Kids’ guide to MS and the accompanying book for parents, Talking with your kids about MS, to help another 30 families who are in a similar situation. There are all sorts of ways of getting involved and raising funds, which help us do all sorts of things to help people with MS – from producing this newsletter every three months, to training each new MS nurse that comes into post. If you would like to help raise funds to support the MS Trust’s work, we can find something for you. We run a programme of fun events throughout the year, some of which are listed to the right; we can also provide support materials for any fundraising activity you’d like to do independently. And there are lots of different ways to donate, including setting up a regular monthly or annual gift by Direct Debit, playing our weekly lottery or supporting an appeal. With your help we can make even more of a difference for the 100,000 people living with MS in the UK, and the 100 people who are diagnosed every week. For more information, please get in touch with our fundraising team To find out more on 01462 476707 about our work in 2014 or fundraising@ see our annual review: mstrust.org.uk, or mstrust.org.uk/annual visit our website review mstrust.org.uk/ fundraising.
Get involved! 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/getinvolved
Suppo everyo rt ne living with M S
MS Circuit Challenge at Goodwood Join us for a fun-filled family day out at the legendary Goodwood Motor Circuit on Sunday 17 May, with a 50 mile cycle followed by a challenge to complete the circuit ‘by any means’! mstrust.org.uk/goodwood
Two opportunities to zip slide We still have places available for our zip slide events over the River Tyne, the first on 6 June from the Tyne Bridge and the second from the BALTIC Centre on 19 September. mstrust.org.uk/zipslide
Ever wanted to skydive? It’s not too late to get involved with our ‘Jump in June’ parachuting month. We also offer skydives all year round at 20 locations across the UK. mstrust.org.uk/jump
London to Paris cycle There are rides taking place in July, August or September 2015 and if you would like to take part in aid of the MS Trust we will provide you with lots of support. mstrust.org.uk/londontoparis
Prudential RideLondon-Surrey 100 Don’t miss our special offer! Sign up for this 100 mile cycle on 2 August for just £15 and get a free place on a training event. mstrust.org.uk/ridelondon
3 Cities Cycle Ride Cycle from London to Brussels via Amsterdam from 26 to 30 August 2015. mstrust.org.uk/3cities
Vietnam to Cambodia cycle ride Pedal your way across two magical countries from 29 October to 8 November 2015, culminating in a visit to Angkor Wat in Cambodia. mstrust.org.uk/vietnam
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/getinvolved
Open Door May 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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15 Tracy Nicholson MS Trust Research Manager
minutes with
Tracy Nicholson is the Research Manager at the MS Trust. She was diagnosed with MS in 2000. To celebrate their 50th birthdays, she and her friend Katrina decided to do a cycle, trek and kayak adventure in North Vietnam to raise funds for the MS Trust How did you come to work for the MS Trust? I was diagnosed with MS in 2000. Back then information about MS wasn’t widely available, but at the time, quite coincidentally, my husband was working on the development of the MS drug Tysabri, so he had been working with the MS Trust. He introduced me to Chris Jones, the founder of the Trust, and she was absolutely brilliant – she really understood what I was going through. I lived quite near the Trust’s offices in Letchworth so she asked me to come in and meet the team. It was about the time that the Trust was thinking about becoming involved in the Risk-sharing Scheme to help people with MS access the first four MS drugs. I was working in clinical research at the time so they asked if I would be interested in helping out. What difference do you think the Risk-sharing Scheme has made for people with MS? I know it’s made a huge difference. I was diagnosed by a general neurologist in a hospital without any specialist MS nurse. When I compare that to now – when I have an MS specialist neurologist, an MS specialist centre, an MS nurse and I get six-monthly reviews – it’s come so far. And that’s because of the Risksharing Scheme. How did your Vietnam trek come about? It came out of turning 50. I’ve never really travelled. I’ve been to lots of places but I’ve never packed a backpack and gone off 22
into the unknown. So this was my opportunity to do it. The trip itself was completely self-funded. We found the trip we wanted to do and all my friends and family gave donations towards my ticket in lieu of 50th birthday presents. I had already made the decision that I was going to challenge myself but then I thought it would be good if the MS Trust could benefit on the back of it. What was the most challenging part of the journey? The weather! We were led to believe it would be 16-19 degrees at this time of year – we thought it would be like a nice English summer. In reality it was 30-35ºC and incredibly humid. The accommodation was also quite challenging. We stayed in homestays (local villagers’ own homes) and it is fair to say that I didn’t really know what to expect. Staying in the equivalent to a hut, sleeping on thin mattresses in open rooms with people I didn’t know, both men and women, and needless to say no privacy! Not my ideal for a good, restful night. And then there were the toilets – it made France in the 1970s look positively luxurious! What was the highlight? Travelling through the villages and the insight into the locals’ lives. It felt a real privilege to have been able to get up close and personal. Their lives are so different from ours, with so little material wealth, but they are so happy. I’ve never done anything like that. I think if you went as a tourist you simply wouldn’t get that insight into the country: the rice paddies and the buffalo.
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What kept you going? At one point I got really sick and people were telling me I didn’t have to do the 50k cycle ride planned for the following day. But I kept saying I do have to do it! A big part of my motivation was that I kept thinking all those people who had sponsored me and raised all that money. I know what the MS Trust does. I know all the things they do, all their enthusiasm and energy. And I know that it’s all done on a tight budget. Every penny counts. It doesn’t matter how big or how small the amount you raise is, whether it’s £5, £50 or £500 it can make a real difference to someone living with MS. What would you say to someone considering taking on a similar challenge? Just do it! I had no idea what I was letting myself in for. But once I got there, it was amazing how you just get into the zone. And it’s amazing what you can do. You just focus on the challenge and getting through each day and as I look back now I feel enormously proud of what I have achieved for both myself and the MS Trust. It was a great experience in a Feeling inspired? stunning part of Find out about MS the world and it Trust overseas events: has left me with mstrust.org.uk/ so many great overseas memories.
Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs
Making Sense of MS
Little blue book (introduction to MS)
Core pack – 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
MS-444
Books MS and me: a selfmanagement guide MS-318
Talking with your kids about MS MS-316
The young person’s guide to MS MS-137
Kids’ guide to MS MS-286
Disease modifying drug therapy MS-90
Managing your bowel:
Primary progressive MS
Secondary progressive MS
Managing your bladder
Falls MS-249
Living with fatigue MS-204
At work with MS MS-246
MS-430
MS-352
MS-458
MS-429
Factsheets Clinically isolated syndrome (CIS) MS-321
Vitamin D MS-314
Pregnancy & parenthood MS-134
Pain MS-96
Depression MS-315
Cognition MS-144
Diet MS-92
Stem cells MS-132
DVD
Move it for MS – a DVD of exercises for people with MS MS-245
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Living well with MS The MS Trust publishes a range of resources to help you understand more about your own MS and find the most effective way to manage it.
MS and me: a self management guide to living with MS Includes practical strategies to support you to make decisions about the lifestyle and treatment choices that are right for you.
Exercises for people with MS
Diet
At work with MS Explores how to achieve a successful work-life balance. Includes information on how MS might affect your work, your employment rights and answers many other work related questions you may have.
Living With Fatigue
This online resource features a range of exercises that can help with balance, posture and strength. The exercises start from a variety of positions – sitting, standing, kneeling or lying – making them suitable for all abilities. Read more: mstrust.org.uk/exercises
Fatigue is one of the commonest symptoms of MS and can have a major impact on daily life. Living With Fatigue was written in conjunction with an MS specialist occupational therapist and illustrated with comments by people with MS who know what it is like to live with the symptom.
Diet factsheet
Move it for MS
Written with the help of a registered dietitian, this factsheet looks at the elements of a healthy diet and summarises and reviews evidence about diet in MS.
To order or read any of these resources for free see
mstrust.org.uk/pubs or use the order form overleaf
Exercise DVD for people with MS led by Mr Motivator. Whether you are looking for some gentle stretching exercises or a more energetic aerobic workout, this DVD has something for everyone – includes sections on posture, balance and fatigue, and finishes with a relaxation session.