Open Door Quarterly newsletter of the MS Trust
November 2016
No one alone Why the MS Trust is funding new MS nurses to support more people with MS, and how you can get involved
Also in this issue: A new consensus on MS services
Top tips for travelling with MS
What exactly is an MRI scan?
How to raise awareness of invisible symptoms
Are you ready to embark on a Scottish canoeing adventure? 6–10 SEPTEMBER 2017 Our Scottish Coast-to-Coast Canoe Challenge gives you the opportunity to make your way down the Great Glen Canoe Trail, one of the UK’s most beautiful waterways. Take in the stunning Scottish scenery and majestic wildlife as you canoe from Fort William to Inverness via the iconic Loch Ness.
All the funds you raise will make a difference today for people living with MS. To find out more and to book your place visit mstrust.org.uk/canoe or call 01462 476707
This trip is operated by the Different Travel Company for the MS Trust Registered charity no1088353
100km 3 lochs 5 days
Contents
Welcome to the November Open Door This is the last issue of Open Door of 2016, and as I write the MS Trust team is hard at work preparing for our annual conference for MS health professionals. This is always a memorable event, an opportunity for us to bring together the wide range of people with a professional interest in MS from across the UK to catch up with the latest news, research and practice, so that they can make even more of a difference for everyone living with MS. But this year’s conference is a extra special because we will be presenting the findings from our year-long MS Forward View project, and announcing the first sites in our MS nurse funding programme. We’re really excited about this work, which we believe reaffirms the MS Trust’s commitment to making a difference today for people living with MS, and shaping a fair future. Look out for more details on our website mstrust.org.uk and in the next issue of Open Door, due out in February 2017. We’ve recently returned from MS Life, the lifestyle event for people with MS, which this year was held in London. It was great to catch up with so many old friends from the MS community but also to meet so many new faces. If this is your first issue of Open Door since you signed up in September, welcome! In this issue you’ll find updates on our projects, plus a look at planning holidays and travel, an exploration of what’s involved in an MRI scan, plus the all the latest news, research and opportunities to support out work. We’d love to hear what you think, and your ideas for future articles. Send me an email at opendoor@mstrust. org.uk or drop me a line at the address below. As is this is the last Open Door of 2016, I should also mention that time is running out to buy your MS Trust Christmas cards! This year we have a brilliant selection of cards, and many are already selling out. The MS Trust was in part founded on the proceeds of Christmas card sales back in 1992, and they still play a huge part in funding our vital work. You can view our range of cards at mstrust.org.uk/christmas We’d like to wish all of our readers, friends and supporters a wonderful festive season. With your help we plan to make even more of a difference for people living with MS in 2017. Best wishes from all of us at the MS Trust.
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Research update The latest research on MS and diet, MS treatment decisions and growing old with MS
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Bridging the gap We introduce our programme to fund new MS nurses in the areas of greatest need and explain how you can get involved in this vital work
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Travel and holidays Susie explains how she set up a new website for people traveling with a wheelchair, while Srin introduces his site that helps you book accessible holiday accommodation
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Invisible symptoms Jane from the MS Trust info team explains how you could help people understand some of the less widely understood, hidden symptoms of MS
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What is... an MRI scan?* We explain just what’s involved and what you might want to think about if you’re having an MRI scan, while Phil Wood shares his experiments in photo editing
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Get involved A round-up of opportunities to do some festive fundraising, plus our new Survival Skills Weekend!
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Pam Macfarlane Chief Executive, MS Trust
News Introducing the results of our MS Forward View project, a round-up of research from the ECTRIMS conference, our MS Decisions decision aid is highly commended by the BMA, plus the latest news on MS drugs
Open Door has always been free to our readers, but it costs us £2 to produce and post each issue to you. If you’d like to donate to cover these costs text OPEN44 £2 to 70070
15 minutes with Pia Reynolds Pia explains what she got out of volunteering on our MS Forward View project, and what she hopes our new nurse funding programme might achieve * Articles marked by an asterisk have been produced in accordance with the Information Standard. The MS Trust is proud to have been recently been reaccredited; this demonstrates our commitment to producing trustworthy health and care information and recognises the quality of our internal editorial processes.
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 2016 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 SP EC I A L I S T SERVICES
MS Trust builds new consensus on the future of MS specialist services We’re proud to have gained widespread agreement on our principles for making sure MS services work well for everyone living with MS This year the MS Trust has been leading the conversation on making sure everyone living with MS gets the best possible specialist support. In April we published the results of our survey, Is MS Care Fair? We found that many people with progressive forms of MS felt they were getting a second class service. They saw less of their neurologist and MS specialist nurse than people with relapsing remitting MS, and often felt that they had been abandoned and left to manage complex symptoms on their own. We want MS specialist services to be available for everyone, no matter what kind of MS they have. But we know MS health professionals and teams are facing big challenges. There are now a large number of disease modifying drugs available for people with relapsing remitting MS, and there’s a new approach to managing MS that encourages treatment soon after diagnosis. Administering and monitoring these drugs puts a big pressure on the limited time of MS teams, and this is likely to increase. To address these challenges we set up the MS Forward View project. We wanted to look at
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Members of the MS community discussing the final draft of our consensus in September
what gets in the way of services providing equitable care and what could help. We wanted to Identify where there is greatest scope to use service capacity more effectively and use existing resources in new and different ways. We also wanted to lead the way to a revised consensus on standards of MS care. Over the last 12 months we’ve been talking to MS nurses, neurologists, allied health professionals, NHS managers, MS organisations and people living with MS to find out how we can make things better.
We’re now very proud to publish our new consensus for creating MS services that work better for everyone with MS. The fact that we’ve got such broad agreement gives us real hope that we can make a big difference for everyone living with MS.
Open Door November 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust
To find out more about our MS Forward View project visit mstrust.org.uk/ forwardview
For more on all symptoms, drugs and treatments see our A–Z of MS mstrust.org.uk/atoz
News
MS S PEC I A L I ST S E RVICES
MS Forward View: the consensus statements The following consensus statements were agreed by organisations including the MS Trust, The MS Society, and the MS special interest group of the Association of British Neurologists, with others signing up as we went to print 1) Everyone with MS needs access to a multidisciplinary team, which can provide an individually tailored, flexible blend of symptom management, disease modification treatment and neurorehabilitation.
6) MS teams should make greater use of the clinical expertise of MS specialist nurses. More admin support, for example, would get the most out of MS nurse time and make services more efficient and sustainable.
2) Service should be designed around the needs of people with MS and not organisational boundaries. MS teams need to connect with wider networks so that people with MS experience seamless and integrated care.
7) We urgently need to make disease modifying drug monitoring safer, more efficient, and convenient for people with MS, and more cost-effective for the NHS. MS teams need effective IT systems to help them talk to each other, and people with MS, quickly and efficiently.
3) Every person with MS should have a named MS health professional who co-ordinates their care, helps them set their goals and puts in place the support they need to achieve them. 4) Everyone with MS should be offered a comprehensive annual review by a health professional with expertise in MS. This is an opportunity to review and update goals and make decisions together about the medical, emotional and social aspects of their health and wellbeing. 5) Every MS team should have a named professional lead for advanced MS. They should be responsible for making sure people with advanced MS know what services are available to them, and ensuring they don’t lose touch with their MS team.
So what happens now?
The MS Trust has developed these statements from evidence collected during the project and from the views of organisations and people from across the MS sector. We believe they will help all of us in the MS sector to be be more focused and co-ordinated in our efforts to improve care for
8) We need to reduce the unwarranted variation in access to and use of disease modifying drugs (DMDs). We need a clinical consensus to review who should prescribe DMDs, to establish safe and practical monitoring, to agree the content and intervals for reviews of disease activity and to determine when people should stop using DMDs. 9) We need better understanding of the number of people with MS in the UK and their need for and use of MS treatments and services. We need a single UK register, used by every MS team.
everyone with MS. These common aims will allow us to pilot projects and education programmes to test and evaluate new ways of working to improve care for people with MS. We particularly want to prioritise care for people who are severely affected by MS and
Read about how Pia got involved in MS Forward View on p22
are keen to run a pilot project looking at the effectiveness of a service having a lead for advanced MS (see statement 5). We are also determined to outline exactly what a good MS service looks like and what people with MS should expect for the care. Look out for more details about these plans in 2017.
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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News ECTRIMS 2016: positive drug results and growing focus on progressive MS World’s biggest MS conference comes to the UK and sees encouraging new progress on multiple fronts MS researchers from around the world gathered in London in September for the annual congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). ECTRIMS is the largest global MS conference, bringing together over 9,000 researchers and health professionals for the latest updates and research findings on treatment, care and management of MS. During ECTRIMS, we saw significant progress in the field of MS and new studies on progressive MS. Below are some of the highlights.
Positive results for sipinimod Researchers presented results of a clinical trial of siponimod, which found that the drug reduced risk of progression in people with secondary progressive multiple sclerosis. The phase III EXPAND trial looked at 1,651 people with secondary progressive MS, most of whom were no longer having relapses. Participants took either siponimod (BAF312) or placebo capsules once a day for up to five years. The study found that people taking siponimod took longer to show signs of progression than those taking placebo. Progression was measured by EDSS scores taken every three months. Results based on EDSS scores every six months were also positive. The reduction was seen in people who still experienced relapses and in those who did not. Siponimod was also shown to be more effective than placebo on other measures used in the study, including number of relapses per year, changes in brain volume, and changes in the number of lesions seen on MRI scans The full results of the study will be submitted for publication. Novartis, the makers of siponimod, will now apply for a licence for the drug, which will then need to be approved by
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Delegates examining posters at ECTRIMS 2016
NICE before it can become available on the NHS.
More news on ocrelizumab There was also further news on ocrelizumab from the ongoing ORATORIO trial. This is a multi-centre and multinational drug trial of ocrelizumab, an experimental drug treatment which is being tested as a treatment for relapsing remitting and primary progressive MS. It is taken as an intravenous infusion every six months. This year several groups presented new data that showed consistent positive effects on walking and slowing disability progression. The most common side effects were related to the infusion process.
Challenging EDSS Researchers from the US presented a poster casting doubt on the usefulness of the Expanded Disability Severity Scale (EDSS). This is a method of assessing
Open Door November 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust
disability in people with MS, and monitoring changes in disability in clinical drug trials. From a study of 258 people with MS they came to the conclusion that the EDSS was not a good measure of cognitive disability in people with MS, and suggested that use of the scale as a “solitary gold standard” in measuring accumulated disability should be reconsidered.
Think Hand This conclusion was reinforced by the #ThinkHand poster presented by the MS team from Barts and the London. This called for a new trials that focused on maintaining upper limb function in people with progressive forms of MS. The EDSS currently focuses on walking as its primary measure of disability, and so many clinical trials exclude people with MS who use wheelchairs for example. Look out for an article about the EDSS in the next issue of Open Door.
News Study shows Lemtrada improves disability in relapsing remitting MS
MS Decisions highly commended by BMA
New analysis of data shows that 28% of participants taking Lemtrada showed at least a one point improvement in disability measures
The MS Trust’s innovative interactive guide to disease modifying drugs, MS Decisions, was highly commended in the BMA Patient Information Awards this September.
Analysis of data from a clinical trial has shown that people taking Lemtrada were more likely to have an improvement in disability over the two years of the study, compared to people taking Rebif. The CARE-MS II two year study compared Lemtrada (alemtuzumab) (426 participants) and Rebif (interferon beta 1a) (202 participants) in people who had taken a disease modifying drug but continued to have relapses. As well as recording relapses and lesions seen on MRI scans, several different measures were used to monitor disability at the start of the study and then every three months. In a new analysis of the data which looked more closely at the disability measures, researchers have shown that over the course of the study, 28% of those taking Lemtrada showed at least a one point improvement in disability measures (EDSS) compared with 15% of those taking Rebif. Compared to Rebif, people taking Lemtrada were more than 2.5 times as likely to have improved thinking skills (cognition) and more than twice as likely to have improved coordination of movements (ataxia). Improvements were also seen in hand and arm function. The researchers considered the possible explanations for these results and excluded the possibility that improvements were due to people recovering from an earlier relapse. They speculate that reduction in MS activity in the brain
The BMA awards encourage well-designed, clinically balanced information that promotes greater awareness and understanding of health matters, and patient choice. The award reviewers described the guide as “an excellent resource that will help many people through a difficult decision”. But we’re not resting on our laurels. It’s one year since we launched MS Decisions and we want to make sure that it is providing the best tools and information to help you weigh up your treatment options. If you’ve used MS Decisions to help you choose between the eleven disease modifying drugs, we’d really like to hear your opinion of the resource. We’ve set up a short survey which should take just a few minutes to complete, but will give us vital feedback, so grab yourself a coffee, and complete the survey at mstrust.org.uk/msdecisions survey
and spinal cord might enhance remyelination and other repair processes, but acknowledge that considerably more work is needed to investigate possible mechanisms for the improvements seen. Amy Bowen, Director of Service Development at the MS Trust said: “We welcome this very interesting study. It is encouraging to see evidence that a disease modifying drug can show improvement in levels of disability, rather than just slowing or preventing further progression. We also welcome the move to a more holistic understanding of disability taken by this study, including upper limb function and thinking skills, and not just mobility, as meaningful measures. “This is a two year study; data from longer studies will help us understand if improvements in disability and symptoms are maintained over longer time periods.”
To find out more about MS disease modifying treatments see MS Decisons: mstrust.org.uk/ msdecisions
Open Door November 2016 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/research
MS AND DIET
Can your diet affect your experience of MS? The effect of diet on MS is a controversial topic and opinions range from denying any benefit to claims that particular diets can effectively cure MS. This pilot study aimed to test a very low fat, plant-based diet in a group of people with relapsing remitting MS Authors Yadav V, et al Title Low-fat, plant-based diet in multiple sclerosis: A randomized controlled trial Journal Multiple Sclerosis and Related Disorders 2016; 9: 80-90 >> Read the full study: tinyurl.com/ms-veg-diet
The study 61 people with relapsing remitting MS took part in the year-long study; 29 continued with their usual diet while 32 followed the McDougall diet, a plant-based diet which is very low in saturated fats.
The results There was no difference between the two groups in the number of lesions detected on the MRI scans, in relapse rate or level of disability measured by EDSS. However, people who followed the diet showed improvements in measures of fatigue, lost significantly more weight than the control group and had significantly lower cholesterol levels. People who followed the diet also had higher scores on a questionnaire that measured their quality of life and overall mood.
the study and the relatively short duration of the study make it difficult to draw firm conclusions from the results. The improvement in fatigue levels seen in the diet group was associated with weight loss, a finding which has been reported in other studies. The researchers point out that simply participating in the diet group, with the expectation of benefits, could have contributed to this effect. This highlights one of the key problems with carrying out research into dietary modifications: that it is impossible to prevent participants from knowing which group they have been assigned to, which then introduces a potential bias in the results.
What is a healthy diet? Following a healthy, balanced diet which is low in fat and includes plenty of fruit and vegetables is important for maintaining general health and reducing the risk of developing other conditions such as heart disease, stroke and diabetes. Your GP or MS nurse can give you advice on how to achieve and maintain a healthy weight through diet and exercise. NHS Choices has some excellent resources on healthy eating – see nhs.uk/livewell/healthy-eating
What does it mean? There was no difference in MRI or disability between the two groups, suggesting that diet might not influence the course of MS, but the small numbers of people in
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Open Door November 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust
To find out more about evidence for the effect of diet on MS visit mstrust.org.uk/diet or order our factsheet on p23
R E SE ARC H U PDAT E
D IS E A S E MO D I F Y I N G T RE ATME NT S
Are neurologists and people with MS on the same page about MS treatments? Are neurologists providing people with MS with the treatment choices, advice and information they think people want? And are people receiving the advice and information they need? Authors Visser LH, et al Title Perspectives and experiences of Dutch multiple sclerosis patients and multiple sclerosis-specialized neurologists on injectable disease-modifying treatment Journal Patient Prefer Adherence. 2016; 10: 659-67 >> Read the full study: tinyurl.com/ms-treatment-preference
The study This study compared the experience and perspectives of people with MS and neurologists concerning the choice of disease modifying drug (DMD), starting and then continuing treatment. 107 people with MS and 18 MS neurologists in the Netherlands completed online questionnaires. The responses were examined to see if the two groups had similar or differing opinions. All of the people with MS were taking one of the injectable DMDs (beta interferons or Copaxone).
The results The questionnaires found that on several topics the people with MS and the neurologists agreed and on others they had differing opinions.
Choosing treatment Most neurologists (83%) were keen for people with MS to choose their own DMD after discussions about treatment and reported discussing the full range of treatment goals. Around a half (59%) of the people with MS said they had been responsible for selecting their own treatment, others (27%) had a
treatment recommended by their health professionals following discussions and the rest (14%) had no discussions and were told which treatment they would be taking. People with MS also reported that certain important treatment goals, for example reduction in disease progression and reduction in the number of new lesions visible on MRI scans, were not discussed.
Starting treatment Most neurologists (78%) would start treatment within six months of diagnosis and the remainder within 12 months. However, almost a quarter of the people (24%) with MS said they had not started within the first 12 months of being diagnosed.
Taking a break or stopping treatment When the people with MS were questioned, just under a quarter (23%) said they had taken a break. Reasons included side effects, not feeling the drug was working for them, as well as practical issues and difficulties in taking the treatment. More than half of the neurologists overestimated the number of people taking a break from treatment.
Sources of information Both the people with MS and the neurologists agreed that they needed more information and materials to facilitate their discussions about treatment options. People with MS said they got most of their information about their treatment options from their neurologist (73%) or their MS nurse (63%). Over half also used online sources of information.
What does it mean? This study shows that people with MS and MS neurologists can have different opinions and experiences when it comes to DMDs. However both groups agreed that having more information would support discussions about treatment options and what to expect from treatment. Although this study examined the experience The MS Trust’s and perspectives of interactive guide people and neurologists to DMDs, MS Decisions, in the Netherlands, has been highly many of the issues commended by the BMA. highlighted are the same for people with See p7 for more info. MS and their health professionals in the UK.
Open Door November 2016 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 AG E
What’s important in growing older with MS? People with MS are living longer than in the past, probably as a result of a higher life expectancy in general and increasingly effective treatments for MS. For many of us it’s not the quantity that matters, but the quality of our extra years. This study aimed to shed some light on what it takes to age relatively well when you have MS
Authors Wallack EM, et all Title Healthy ageing from the perspective of 683 older people with multiple sclerosis Journal Multiple Sclerosis International 2016; 2016: 1845720 >> Read the study: tinyurl.com/MS-ageing-well
The study Canadian researchers sent out surveys to people older than 55 who have been living with MS for more than 20 years. On the last page of the survey, participants answered the question “From your point of view, what are the most important things that help you live long and healthy with MS?”
The results Surveys from 683 participants were analysed. The average age was 64, participants had lived with MS for an average of 33 years, and most people lived in their own home with a spouse or partner and required help with daily activities. Seven common themes emerged from responses to the final question but the vast majority attributed healthy ageing with MS to combinations of three of these factors. Social connections – the most common factor people felt important for health ageing with MS covered relationships with family, friends, neighbours and even pets. It also included activities outside the home such as attending support groups and doing volunteer work.
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Attitude and outlook on life – included thinking positively and being optimistic, having determination and a sense of humour in difficult situations, but also accepting and working within personal limits. Lifestyle choices and habits – this theme covered many subthemes, showing just how personal this aspect of living well with MS can be. It included looking after health and fitness through diet, staying active and getting adequate sleep, as well as maintaining a sense of purpose through hobbies, work, travelling and seeking out resources and information on MS. After these three, the next most important theme was health care system. Access to high quality care that was prompt, reflexive, and appropriate was highly valued. People appreciated health professionals that listened to their opinions, acknowledged their feelings and gave them encouragement. However, some respondents described bad experiences and frustrations at not being able to access treatments. The remaining three themes
were spirituality and religion, independence and finances and were referred to less frequently in responses.
What does it mean? The experiences of older people who have lived for decades with MS highlight those aspects of life which are most likely to make a big difference to younger people as they grow older. This can help people plan for the future and guide development of practical help and specialist services required to manage the challenges of ageing with MS.
For more about living well with MS, see mstrust.org.uk/living-ms
Open Door November 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust
F UN D IN G N E W M S N URSES
Bridging the gap For over 20 years the MS Trust has been crucial to the development of MS specialist nursing, as the workforce has grown from three nurses to over 200. But there are still worrying inequities across the UK, so this year we’re taking the bold step of funding new MS nurses in the areas of greatest need. Find out why we’re intervening, and why we need your continuing support to make a difference for thousands of people living with MS
In September we published MS Nursing in the UK 2016. This was an update of research that we first published in 2014, which found that parts of the UK had a worrying shortage of MS nurses. Despite a modest increase in nurse numbers since 2014, we found that 64 per cent of people with MS in the UK – around 68,000 people – live in areas where there aren’t enough MS nurses to provide vital care and support. This is worrying news. Our research has repeatedly shown that MS nurses are absolutely critical for the health and wellbeing of people with MS. They often work with people from the moment of diagnosis, throughout their lives with MS, providing expert information and support in making choices, particularly about their health and treatment. The MS Trust has been integral to the development of MS specialising nursing over the last two decades. We have trained every MS nurse in the country on our accredited foundation course. We have developed professional development programmes and resources to ensure nurses remain up to date with the latest advances in MS care. And we have
campaigned for the importance of State of the nation their work, repeatedly calling on For our report, we classified each NHS area by the NICE to recognise MS nurses as the number of people with MS per whole-time MS cornerstone of any MS service. nurse. Our recommended sustainable ratio is 358 But this year we’re stepping up our people with MS per nurse. Green areas on the map work to make sure everyone with MS below have that ratio or lower. receives the best possible care Amber areas had up to twice the sustainable We know the NHS is coming under number – up to 716 people per nurse. increasing strain, and MS services Red areas have even more; in many are often not a priority. But we can’t cases nurses have three or sit by and see people with MS go four times the sustainable without vital specialist care. So for number. Large caseloads, the first time we’re taking the step of little support and long identifying the areas of greatest need hours make it very and funding new MS nurses. challenging for Next spring we will name the some nurses in first three of our new MS nurses. We these areas to will train them, support them, and deliver the care help them to make a life-changing they would like difference for thousands of people to. Read more living with MS. over the This is a huge undertaking for page. a charity of our size. We can only achieve it with your continuing support. Over the page find out more about the challenges facing To read the MS nurses, and the full report visit difference they can mstrust.org.uk/ make for people living with MS and how you nurses-2016 can get involved. Together we can make sure that no one has to manage MS alone.
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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F UND I N G N EW MS NU R S E S
“An extra nurse would make a huge difference” Mhairi Coutts is an MS nurse in Lanarkshire with one of the largest caseloads in the UK. She tells us about her work, and the challenges she faces I’ve been an MS nurse for 14 years. The role has hugely changed in that time. At the start there weren’t many treatments and sometimes it was a bit of a lottery whether you could get them or not. Now there are so many treatments for people with relapsing remitting MS, and if you’re an MS nurse you sometimes spend more time talking about treatments than MS itself. We have about 1,600 people with MS on our caseload. That’s over four times the recommended caseload. I can see anything between 60-70 people a week. Some of these people might be on disease modifying treatments. Other times we might be talking about diagnosis, or symptom management or pregnancy. I manage by working very long hours. Because I have to. Many people say to me, just work your hours and show management you’re struggling. As a nurse I find that difficult. If I have a patient with a need, I can’t walk away. I’ve always wanted to be an MS nurse. I love the job, I love the role, I love what I do. I would hate to think that if I ever I was in that position that there wouldn’t be someone there for me. I find it difficult to say “Oh, I’ll leave that til tomorrow,” if someone really needs to speak to me that day. The issue of delivering a fair and equitable service is huge. I’ve had a lot of conversations with other MS nurses. We’re in danger of becoming very treatment focused. It’s fantastic that these treatments are available for people, but there’s a large number of people who don’t qualify for them. And they deserve the same kind of service. What’s happening now is nurses become focused on treatments – they’re based in a hospital
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and all they’re doing is disease modifying drugs and monitoring. They’re not looking at spasticity or pain or cognitive function or continence. They may lose these skills. We maybe need to look at, if we have more than one MS nurse on a team, should we have different roles? Should we have a nurse focused on delivering drugs, a nurse for palliative care issues?
“My mum had MS and I have a niece with MS. So I know on a personal level the impact it can have”
An extra MS nurse in Lanarkshire would make a huge difference. Because I’m so busy seeing patients there’s things I can’t do. I would like to develop services. We run a newly diagnosed education programme, but there’s other education things I would like to do. But you’re so busy doing the job you don’t have time to do the development.
Open Door November 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust
In terms of my own development, it’s very hard for me to go on courses. I want to learn my role. For me to be able to offer my patients a good services I need to keep learning. But when you’re so busy you neglect these things. One of the biggest things for me, because I’m the only MS nurse in this area, is having no one to talk to. You’re really on your own. If you’re struggling with something clinical, there’s not many people who really understand MS. It’s quite isolating. Having someone to discuss ideas with would make a big difference. I think we need several nurses to deliver the gold standard service that people deserve. I’ve been trying for several years to look at support for my role. I’m sustaining it because I have to do my job. Thankfully I’ve haven’t had to be off sick, but if something happened, what would happen to our service? I really worry about that. There are times when you don’t feel great, but you have to come in, you have to do the job. My mum had MS and I have a niece with MS. So I know on a personal level the impact it can have on your life.
F UNDING NE W M S NURS ES
“I still need care, I still need someone to talk to” Carol was diagnosed in 2005. She tells us why she thinks we urgently need more MS nurses
I was finally diagnosed in 2005, but I knew I had it before then. When I turned 30 I went numb down one side. I didn’t know what was going on. I could feel things, but I couldn’t feel hot or cold. I went to the hospital and they did various tests, but I heard nothing. My doctor didn’t tell me I had to see a neurologist. So I didn’t know for 15 years. They were 15 years when nothing very much happened, just some occasional numbness. But then I got to the stage where I had two episodes of double vision. So I went to the doctor again and he told me to see the neurologist. I had an MRI scan and a lumbar puncture. A few months later the doctor told me I had MS. I was devastated. I didn’t know what to do. He told me it’s alright, you won’t die from it. That was it. I didn’t get any other support. You just have to get on with it. I was on Rebif for about seven years. I was shown how to inject, but later on I don’t feel like I got as much support. My appointments were often cancelled. When the doctor told me I was going into secondary progressive MS he suggested
I come off the Rebif. And after that “My MS nurse is there was just overworked. nothing. She doesn’t have the I felt let time to check up on down. me” Nobody told me anything. I knew there were problems at the centre I was registered at, so I changed hospital and saw a different neurologist. I get more information at my new place. But my MS nurse is just overworked. She doesn’t have the time to check up on me, to find out how I’m doing. How many MS nurses are there? We need more MS nurses. I need to see someone. Maybe I’m past the relapsing phase of MS, maybe I can’t take any disease modifying drugs. But I still need care, I still need someone to talk to. It’s just a question of getting the right people to do it.
Are we letting the NHS off the hook? Since we launched our campaign to fund new MS nurses, some people have told us that, although they believe our work will make a huge difference to people living with MS, they feel that we might be letting the NHS off the hook. Why should charities and their supporters have to fund new NHS nurses? We absolutely understand these concerns. Our nurse funding programme is very much a partnership with the NHS. We fund new nurses for the first 15 months of their post. We will train them and support them to deliver the best possible service. But after that period, once the nurse is firmly established and has demonstrated their value, the NHS will take over responsibility for funding the post. We will continue to support and develop the nurses, but they will be entirely funded by the NHS. We’ve campaigned for new MS nurses for many years, and we believe this is the best way for us to make a real difference for people living with MS today. If we don’t intervene now, we worry that MS services will struggle to maintain existing levels of support, let alone make improvements. We believe we can make a difference for thousands of people living with MS today. But we can only do this with your support.
To join us and help fund new MS nurses text MSNU16 £5 to 70070, visit mstrust.org.uk/no1alone or complete the form on p24.
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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TR AV E L AN D HOLIDAYS
You’ll never stop me travelling! Susie Twydell has always loved travelling and seeing the world and was determined she wasn’t going to let MS stop her. But taking her wheelchair wasn’t always straightforward. Pulling together her experiences, plus those of others around the world, she has created wheelchairworld.org, a website full of information, advice and useful links for wheelchair users planning trips to over 90 countries I was diagnosed with MS when I was 29. For the first few years, I was okay (ish!) but then things started to go wrong. I went from walking okay, to using one stick, then needing two sticks, then finally being in a wheelchair. Of course, this has caused many complications for my life. You don’t realise how difficult many thing become when you are a wheelchair user – and travelling was one of the major unexpected difficulties! I absolutely love travelling, and before my diagnosis, I had been to over 60 countries, climbed the Himalayas to Everest base camp, and spent a year on tour with a Latin American rock star. I used to just pack my bags and go. Now I have to plan every single detail very carefully. What happens if I need the loo on a long haul flight and they put my seat 15 rows from the nearest toilet? What about hotels? Only wheelchair users will tell you about the flight of steps that lead up to the entrance of the wheelchair accessible hotel!
if there will be an option that you can use. Wouldn’t it be great if I could just consult another wheelchair user that had been there before me? Every single one of us wheelchair users that travel Susie in Brazil has an amazing amount of knowledge and super useful information about the destination. Every time I have gone somewhere I have found a few snippets of online information put
We all have the same aim: to make accessible travel a lot easier!
Bringing knowledge together Did you know that cobblestones, which bring rustic charm to an old town, are a complete anathema to wheelchair users and cause you to be rattled around in your wheelchair like a solitary pound coin in an over-enthusiastic charity collectors tin? And what about disabled toilets? In the UK, you can just pop into a MacDonalds, confident that they will have a disabled toilet. But not so in the rest of the world. Cue hours of online searching to find out
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there by other wheelchair users. So I had a great idea: create a site that brings all this traveller information together, links to all of these really useful reviews and resources and also provides a place for people to add their own reviews. So wheelchairworld.org was born. The
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great thing about the site is that all the other wheelchair users sites are more than happy to be linked and many of us are now in touch and we’re working together to share information, because we all have the same aim: to make accessible travel a lot easier! I have spent over a year trawling the internet for blogs, groups and sites and every time I search I find something new to put on Wheelchairworld.org. And even better? I often find information about places that I would love to visit myself! When wheelchairworld.org started out, it was just a review site but I very quickly realised that it was not unique, and there were hundreds if not thousands of wheelchair travellers review sites out there. I realised that we didn’t need another review site, but rather a site that brought all the reviews together, and helped improve wheelchair travelling by making information easy to find and ensuring that the right reviews could be found for the right country at the right time!
TR AV E L AND HO LIDAYS Making my dreams a reality wheelchairworld.org now has thousands of links to other wheelchair review sites as well as links to things that are really useful for wheelchair travel, such as the step-free tube guide for London. wheelchairworld.org now has information about more countries than I have been to (90 at last count). There’s more information about some countries than others, but hopefully it’s all helpful to wheelchair travellers. With the help of donations, I am constantly improving Wheelchairworld. org. Now for each country you can find three separate tabs – one for reviews, one for useful information and one for service providers. Countries with a lot of resources have been further broken down into popular areas and our next goal is to develop a tagging system so you can find all resources that mention safaris or cruises even more easily. I also plan to introduce the ability to rate links, as well as show which ones are current and which ones are historic. All these changes are based on user feedback and will really help to improve the user experience. Next year is my 40th birthday and I am determined to see the mountain gorillas in Rwanda. Obviously there is not a huge amount of information available from wheelchair travellers, but what I have found has helped me to make my dreams a reality and to know that it IS possible, that it has been done before. I’ve also found that Kigali, the capital, is very hilly and not great for wheelchair users at all!
Visit wheelchairworld. org Follow @worldwheelchair on Twitter or look up wheelchairworld on Facebook.
Taking the stress out of finding accessible accommodation Srin Madipalli was frustrated when he found that hotel booking sites often provided inaccurate information about their accessibility. Inspired by Airbnb, he’s set up Accomable, a new site designed to help you feel confident you’re booking accommodation that’s right for you I’ve always loved to travel. A couple of years ago I took six months off work to go travelling, and it is one of the best things I have ever done. I am disabled but I was still able to go scuba diving, wheelchair trekking, and even learned how to fly a plane! But I did find the logistics of planning a trip with a wheelchair incredibly difficult at times. I’d arrive at accommodation that was advertised as accessible only to find it wasn’t, and I’d have to research hire cars that were specially adapted to fit my wheelchair at each new location. I knew then that I wanted to start something that would make accessible travel easier and really enjoyable too. More motivation came when I left my job and did an MBA. I quickly became interested in technology and how transformative it could be. Companies like Airbnb and Uber were not only changing the business landscape but they were transforming the way people travelled too. Yet time and again accessibility was overlooked. More than 10 per cent of people in the UK have a mobility issue, but hotel booking sites often aren’t very good at providing accurate information about accessibility. They can be hard to trust, which in turn has made many people with a disability very nervous to travel. So I decided to teach myself how to build websites, so I could start a company which makes accessible travel easy to book, good value and fun. And so, last summer, Accomable was born. Since our launch the response has been brilliant. We work closely with everyone who books our accommodation to ensure they’re not only confident about their holiday, but really looking forward to it. We’ve also
Srin at the Golden Gate Bridge
had a great response from customers who don’t have a mobility issue themselves but are booking holidays for family or friends, who have wheelchairs or require step-free access. Our most popular destinations at the moment are the USA and Europe, particularly the UK, Spain and France. These are big destinations for UK travellers, with easy transport links, and great infrastructure for disabled tourists. We also list properties that offer specialist equipment, like wheelchairs which have been adapted for the beach or countryside, and swimming pool hoists. Every property has to back up an access claim with pictures. So if you say you have grab rails in the bathroom, you need to provide an image. Also, many of the properties are places I have stayed in, or a member of our team/ community has recommended. We work with various tourism boards in Europe that have already vetted properties. And we’re also also piloting a system where videos depicting access can be uploaded. With Accomable we’re changing the face of accessible accommodation. We want everyone who wants to travel to feel confident they can find somewhere to stay that works for them. Visit accomable.com
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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PR ACT I CAL T I PS
Invisible symptoms Many MS symptoms seem invisible to other people. They may affect you greatly but no one seems to notice. This can be very frustrating and upsetting. Jane from the MS Trust info team explores some of the reasons for this and suggests what you could do to raise awareness
It can be surprising sometimes. You might be clinging onto your shopping trolley for support, experiencing dizziness and fatigue but no one seems to notice. Another time, your lip is set and your expression is grim but do they ask how your pain is today? Many MS symptoms seem invisible to other people. They may affect you greatly but pass by everyone else. This can be very frustrating and upsetting. So, why don’t people see some of the more visible signs of so-called invisible symptoms?
Which MS symptoms? Which MS symptoms can seem invisible? Some symptoms are more invisible than others but invisible symptoms could include: anxiety, bladder, symptoms, bowel difficulties, cognitive symptoms (such as problems with memory, concentration or planning), depression, dizziness, fatigue, pain, sexual issues and sight problems.
Why don’t people realise? Could someone tell if you had one of these symptoms? And if not, why not? Here are a few possibilities:
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They don’t know you have the symptom People aren’t mind readers so perhaps we expect too much from them in figuring out what’s going on. Will they guess that a grim expression means that you are in pain rather than you burnt the dinner earlier on (or whatever they imagine has happened)? Will they realise that taking the last seat on the bus means that your fatigue is bad today rather than your shoes are killing you? If they don’t know, is it reasonable to expect them to guess and guess correctly?
They don’t remember Maybe you have already explained your MS symptoms but someone doesn’t ask you about them or remember that you can’t walk for very long, for example, when they are organising an outing. Why is this? Many people are very wrapped up in their own lives and their own worries and don’t have head space for remembering anything more. It’s not that people don’t care, they just don’t get around to thinking about it.
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P R AC TICAL T IPS They don’t notice You may feel that your MS symptoms are really obvious. So-called invisible symptoms can be so bad that they show up on your face, especially if you are in pain. Surely if you are holding onto something for support it must be a dizzy day or a fatigue day or both. It can be puzzling that others don’t notice something is wrong, even if they can’t realise the full extent of your difficulties. As before, it may be because people are in their own world and not looking outward enough to see what’s happening to you.
They don’t understand Perhaps you’ve told them about your symptoms and they’ve remembered what you said. However, they don’t really understand how these symptoms affect you in everyday life. It may be worth thinking back to when you were first learning about MS. Had you heard of spasticity? Could you explain nerve pain? These are quite difficult concepts to get to grips with. For most people, these things will be outside their personal experience and general knowledge so it will be a steep learning curve for them to understand what you are going through. You might need to explain several times or in different ways so that they appreciate your difficulties.
They put two and two together and get five! People can be very quick to jump to conclusions. If you are wobbly on your feet and walking up the High Street after pub closing time they may assume you’ve had a bit too much alcohol. If it’s 10am, they may still assume the same thing. The chances are that they will not consider MS balance symptoms as a possibility.
You are doing a great job of hiding it Many people with MS prefer to cover up how much symptoms are affecting them. Some worry that they shouldn’t make a fuss. Others find that invisible symptoms are easier to hide and this can be helpful if they don’t want to disclose thier diagnosis to everyone. Perhaps you are doing a better job of hiding your symptoms than you realised! Concealing the full effects of symptoms can be counterproductive if everyone assumes you are OK when you really aren’t. Would a bit more openness be better?
What could you do? You could wear a T shirt that says “Can you see my invisible symptoms?” It might help! On the other hand, you might like to: • explain more about how MS affects you and emphasise that it includes invisible symptoms. • add in gentle prompts and reminders like “You’ll remember that I can’t walk further than the High
Street without a sit down, so can we stop at the bench on our way?” • highlight when symptoms are playing up by being open about your limitations, for example, “I know I said I wanted to walk into town but my fatigue is really bad today. I’d like us to take the bus so I can use my energy for shopping once we get there.” • try different ways of explaining your symptoms. Muscle stiffness may be an easier concept to understand than spasticity, for example. • avoid hiding your symptoms so much. Being more open about the impact of your MS is not the same as making a fuss so perhaps some plain speaking will make a difference.
How can others help? If you are the friend, family or colleague of someone with MS, you could make a difference by: • being supportive. MS is a complex condition where different people experience different symptoms some of which may not be obvious to you. • avoiding saying “But you look so well!” Many people find this hugely frustrating as they may look OK on the outside but they are feeling really ill on the inside. • asking open questions such as “How are you today?” This allows someone with MS to choose from a whole range of possible answers from “really good” to “really struggling” and gives them the option to give some detail if they’d like to. • asking if there is anything that you can do to help right now. You could follow it up by encouraging them to tell you when you can help in the future. It can be very reassuring to know that you can call on someone if needed. • trying to learn about invisible symptoms so that you understand better. • listening! • accepting that invisible symptoms are very real to the person who is experiencing them.
Read more practical tips on the MS Trust blog: mstrust.org.uk/blog
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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WHAT I S . . . ?
What is... an MRI scan? Magnetic resonance imaging or MRI is an important element in diagnosing MS and increasingly in monitoring disease activity by producing images of slices through the body. But what does an MRI machine do and what do scans show? The MS Trust info team explain... Although there is dispute as to who actually invented MRI, the first machines to use magnetic resonance imaging were developed in the early 1970s. In 1981 a team in Hammersmith used a scanner to show an MS lesion for the first time, but it wasn’t until the 1990s that MRI started to become a key part of diagnosing the condition. To make a diagnosis of MS, a neurologist is looking for evidence of two or more areas of scarring in different parts of the brain or spinal cord that have occurred at different points in time. In the past, without the ability to see inside the body, it was only possible to make this judgement after someone had had at least two relapses. As MRI scanners have become more powerful, it is now technically possible to make a diagnosis based on information from one attack of symptoms and evidence of further disease activity from scans.
How does an MRI scanner work? An MRI scanner is essentially a large tubular magnet. The person being scanned lies inside the tube. Images are created by using magnetic fields and radio waves to monitor the behaviour of hydrogen atoms in the body. The nucleus at the centre of an atom spins like a top. The powerful magnetic field in an MRI machine (more than 10,000 times stronger than gravity) makes the atoms line up in the direction of the magnetic field. The machine then fires a pulse of radio waves that causes the atoms to spin in a different direction. When the pulse is turned off, the atoms return to their natural alignment within the magnetic field and release energy. Computers translate this signal into an image of a slice through the body.
I’d heard some horror stories, but it wasn’t as claustrophobic as people say at all, just really long and boring! People say they’re loud, they don’t say that it sounds like you’re listening to techno with the volume turned up to 11! Kim
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There are two main types of MRI scan:
To prepare
• T1 weighted scans show areas myself I watched of permanent damage to one on YouTube so that I nerves (visible as black had a good idea of what to patches or holes) expect. I really think this helped • T2 weighted scans show and reassured me that I would the total number of lesions be OK. The scan itself was or areas of damage to OK albeit a bit of a tight nerves, both those still being squeeze. attacked by the immune Dawn system (active) and those when the attack has finished, leaving scarring on the nerves (non-active). Typically a T2 scan is used for diagnosis. The chemical make-up of the scars caused by MS means that they show up as white patches on MRI I wish I had been images, giving a clear picture of aware of the noise level the effects of MS on the brain before my first scan, that and and spinal cord. Sometime the lack of space inside people may be injected with the machine. My first a contrast enhancing agent experience was over an called gadolinium before the hour and time dragged. scan, which helps to distinguish Clive between areas of active and nonactive lesions.
What’s it like to have an MRI scan? MRI scans generally last from half an hour to an hour. During this time you are asked to lie as still as possible. As the scanner is a very powerful magnet, all metallic objects must be left outside the scanning room. It is best not to wear clothes with metal poppers, zips or metal buckles. While it’s scanning, the machine makes loud banging and buzzing I would recommend noises. Often people are given anyone having one to go headphones to make this more to the toilet first,especially if tolerable. Some people can feel you have bladder/bowel issues claustrophobic lying inside the as you can’t move. MRI tube.
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Jenny
W HAT IS ...?
Magnetic fields When Phil Wood had an MRI scan earlier this year, he was given a CD of the images to take home. With the help of some image editing software he was able to get a whole new insight into what the scans showed Modern science and technology is pretty amazing really. MRI is a good example. It’s able to create good resolution pictures of the inside of my head, with no pain, just the discomfort of laying still in a noisy tube for an hour. I had my first MRI in February after seeing an ophthalmologist who was trying to determine the cause of my optic neuritis. I then needed another one after seeing my MS specialist neurologist in March. After my scan I got to take a CD home with my images on. It is a fascinating way to waste time in front of a computer screen!
Here is a slice through the middle of my head, showing a typical picture of a brain in a skull (and is proof that I have one). Notice the scanner isn’t large enough to fit my big nose in! When I first saw this I immediately recognised my profile, especially as we’d done a profile family portrait a few years ago, so I had a play in Photoshop and merged the two together (see pic top right). Moving on to the reason for the MRI: on certain types of scans (there are lots – T1, T2, FLAIR, with or without contrast fluid, etc.) inflammation in the white matter of the brain can show up as lighter or darker patches. A FLAIR scan (FLuid Attenuation Inversion Recovery) is very good at showing this. Here (Fig 1) is one from my first scan, note the (pretty obvious) pale area on one area of my
Fig 1
Fig 2
brain on the left of the picture (actually the right side of my brain). After the second scan, as you can imagine, I was quite eager to compare my images when I got home. They didn’t quite line up exactly side by side but it was quite clear that some patches had gone and some were new. Here (Fig 2) you can see a pretty good comparison. The scans are 40 days apart. The earlier scan on the left shows inflammation around the ventricles running through the middle of my brain. The later scan on the right shows that these are reduced but also an area on the left of the image which is new. Not everyone gets further MRI scans after they’ve been diagnosed, but some neurologists think we should have them
at least annually, to check on disease activity. Personally, I’m very keen on having MRIs regularly in the future. I can understand that it’s an expensive tool but the results and understanding are only getting better. When I had my first neurology appointment my neurologist showed me lots of areas of inflammation but explained that they could be in quiet areas of the brain. It is Find out more about this kind of MRI scans at unknown and mstrust.org.uk/MRI unseen that the MRI is great for.
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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G E T I N VO LV E D
Festive fundraising Are you looking for a reason to wear your Christmas jumper? With the festive season on the horizon and people feeling in a giving mood, this is a great time of year to harness some of that positive spirit and use it to help people with MS It’s not just extreme challenges like running a marathon or trekking across the desert that make a difference for people with MS. We receive vital funding each year thanks to people who organise street collections, coffee mornings, sell cakes or take on their own personal challenges. There are lots of fun things you can do along with friends, family and colleagues to help raise funds and awareness this festive season.
Get your bake on! Are you a fan of the Great British Bake Off? Then perhaps you’d like to get involved with our Christmas Cake Off! You could organise a cake sale or baking competition and you’ll find that people are very willing to part with a few pounds for some delicious home-made cakes. Perhaps you work somewhere that would let you run a cake stall one lunchtime? If your colleagues are anything like the staff here at the MS Trust then the cakes won’t stick around for long. Visit mstrust.org.uk/cake-off
Get your festive knitwear on! Another great idea for work or school is to hold a Christmas jumper day. Charge £1 for those who wear something Christmassy and £2 for those who don’t! People with Christmas jumpers will be pleased to have an excuse to wear their seasonal knitwear out in public so why not exploit this festive fashion for the benefit of people with MS? If you’re at home during the day, perhaps you would like to follow the suggestion of one of our supporters and join in with Christmas Jumper Day online. Visit mstrust.org.uk/jumper
Reindeer Rally If you have connections to any youth groups or schools you might be interested in our Reindeer Rally. Contact us for a pack and we’ll provide reindeer masks for each child which they can decorate and wear for a sponsored run or obstacle race. Sarah, who is a Rainbow and Brownie Leader, organised a Reindeer Rally last year with members of Girlguiding Dalton District. She said, “As someone who has MS I have really appreciated the support of the MS Trust, especially the clear information they provide. I thought the Reindeer Rally would be an excellent opportunity to involve the girls in service to the wider community. We visited South Lakes Safari Zoo, suitably adorned with antlers and seasonal attire, to complete a trail around the zoo and feed the reindeer. When all the sponsor money came in, we’d raised £1,000.” Visit mstrust.org.uk/reindeer
Santa run We also have a few places left for the Santa Run in Victoria Park, London on 4 December. You can run, walk or wheel the 5K or 10K route around the park, dressed in your free Santa suit. Kids over the age of 8 can also take part and you can even bring the dog. Visit mstrust.org.uk/santarun If you don’t like the sound of any of this, we’re sure we can find something for you. Kelly and Donna in our community fundraising team love to hear from anyone who would like to get involved in fundraising, whether you want to go carol singing, organise a quiz night, pack bags at your local supermarket or order a collection tin to put in a shop or pub. However much you can raise, it all helps to make sure that no one has to manage MS alone. And we will make sure that you are not alone For lots more fun in your fundraising efforts by providing fundraising ideas lots of support, fundraising materials and visit mstrust.org.uk/ encouragement along the way. yourway
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G E T INVO LVED
Go wild for MS! Our new Survival Skills Weekend offers you the chance to get back to nature and make a difference for people living with MS
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/fundraising
Suppor everyon t e living with M S
Send MS Trust Christmas cards Order your cards from the MS Trust this year and every card you send will help to raise awareness of MS and the MS Trust. mstrust.org.uk/christmas
London Marathon
Leave the modern world behind and join us for a Survival Skills Weekend in Ashclyst Forest, near Exeter, where you will learn to build shelters, light fires and forage for food. Channel your inner Bear Grylls or Ray Mears and learn skills that could come in very handy if you ever find yourself lost in the wilderness! If you’re the type of person who likes your creature comforts, or can’t imagine going three days without checking Facebook, then imagine how much you could raise! You will be living outside from Friday to Sunday, sleeping in a shelter you have built and using the bathroom outdoors. There’s no escape to a warm hotel room or hot showers. If you fancy going back to basics and learning how to survive in the wild, our Survival Skills Weekend will be taking place from 23–25 June 2017. It costs £100 to register and you will be required to raise at least £395 in sponsorship for the MS Trust. We only have around 15 places on this challenge, so please get in touch as soon as you can if you’re interested.
Ready to go wild? For more info visit mstrust.org.uk/survival or call 01462 476707
Do you know anyone with a London Marathon place? We are looking for runners with their own places to join our team. We will help all the way to the finish line with fundraising, training and event day support. mstrust.org.uk/londonmarathon
Earlybird discounts on 2017 runs Don’t miss out on our discounted registration fees for the 2017 British 10K London Run and Great North Run. Earlybird booking available til end of January. mstrust.org.uk/run
London to Paris Tour de France cycle Take your cycling up a gear and join this fantastic 300 mile challenge from 19-23 July 2017 to raise sponsorship for the MS Trust. You’ll be glad you did. mstrust.org.uk/londontoparis
Scottish Coast to Coast Canoe Challenge Paddle from Fort William to Inverness along the Great Glen Canoe Trail from 6-10 September 2017 in our new fundraising challenge. Places are very limited. mstrust.org.uk/canoe
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/getinvolved
Open Door November 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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15
minutes with
MS Trust supporter
Pia Reynolds
Pia Reynolds was born in Denmark, but has lived in the UK for 25 years. This year she joined our MS Forward View project, helping to represent the views of people living with MS. She’s also involved with our new MS nurse funding project. When were you diagnosed with MS? I was diagnosed in 2011. I had optic neuritis in 2010, but my neurologist didn’t want to make the MS diagnosis based solely on that. After a relapse of sensory symptoms in 2011 he gave me the final diagnosis. Initially, I panicked completely. I googled MS and found long lists of possible symptoms, all of which I instantly felt like I had. However, it wasn’t long before it simply became part of my dayto-day life and became my new normal. How have you adapted to living with MS? I feel lucky in that I currently only suffer from sensory symptoms. Although they can be horrible and depressing, they don’t really stop me from doing anything. I might not be able to do quite as much as before, and I definitely struggle with making plans far in advance. My husband and my son are both amazing – on bad days they are understanding and helpful and on better days we laugh together at my clumsiness. They would argue that my normal has always been a bit unusual, so my new normal is just a variation on a theme. What made you want to get involved with MS Forward View? Before spotting the advert on the MS Trust Facebook page, I had never considered getting involved with anything to do with MS. However, when I saw the ad, I just thought – that’s me! Being able to make a difference using my experience as a person with MS to help others with MS, well it was a no-brainer. I hate inequality, unfairness and inefficiency, and here was an opportunity to have my voice heard and to help shape the future of provision of service for people with MS.
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What do you think MS Forward View will accomplish? Quite often, we see news items on reports made on various subjects. They note where things are wrong and where things are right and perhaps even go as far as to suggest improvements. MS Forward View takes it a step further in attempting to use the results from all the workshops, interviews and surveys to create a consensus about the the big priorities to improve MS care and the practical steps that will make it a reality. What’s the biggest thing you’ve learned from the project? I have learned how much we can achieve by taking the time to listen to each other. I was overwhelmed by the reception the views of people with MS received. Everyone from MS nurses to neuropharmacists and neurologists thoroughly appreciated learning what people with MS value in the services they receive. In as diverse a condition as MS, it is often difficult to remember that there really is no such thing as a typical patient – we don’t all fit in to a convenient box and so a one size fits all approach is not really suitable. You’re now helping us on our nurse funding programme. What difference do you think this will make to people with MS? Here we have a perfect example of the fewer words, more action approach. It is clear that there are areas in the UK with such shortage of nurses that there is no chance of providing a good level of support for people with MS. Through the nurse funding programme, the MS Trust is not only going to introduce new MS nurses, they will also ensure they have the
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right training to provide the best service to people with MS. This will help to ensure that all people, with all types of MS, will have access to an MS nurse – which in my opinion is the single most important thing for all people with MS! What’s do you miss most about Denmark? I’ve been in the UK for nearly 25 years, so I feel pretty British, but I always miss Danish sweets (salty licorice!) and Danish baking. However, the Olympics has rekindled my love for handball, a sport I played growing up, and I have been following it obsessively! I’m still on cloud nine because the Danish men’s team won Olympic handball gold! What do you like most about the UK? I feel so lucky living in a country with an NHS! Through various forums, I hear a lot about people with MS in other countries, and although we of course always have things to complain about (not enough funding, inequality in service provision), in comparison with many other countries around the world, we are lucky to have a free health service! To think there are people with MS who have to pay for their own DMDs. They aren’t cheap!
Find out more about our MS Forward View project on p4, and find out more about our nurse funding programme on p11
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) MS-444
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-448
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
The kids’ guide to MS MS-286
Disease modifying drug therapy MS-90
Sex & MS: men MS-356
Primary progressive MS
Managing your bladder MS-429
Falls MS-249
Living with fatigue MS-204
Clinically isolated syndrome (CIS) (revised) MS-321
Vitamin D (revised) MS-314
Pregnancy & parenthood
Pain MS-96
Depression MS-315
Cognition MS-144
Diet MS-92
Stem cells MS-132
MS-352
Secondary progressive MS MS-458
Factsheets
DVD
MS-134
Move it for MS – a DVD of exercises for people with MS MS-245
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