November 2014 Open Door

Quarterly newsletter of the MS Trust

Open Door November 2014

How our new resource delivers the right MS information at the right time for you

Also in this issue Does eating too much salt affect your MS?

Cognitive rehab: could it work for you?

Parenting with MS: how do you manage fatigue?

15 minutes with TV journalist Stephanie Scawen

Welcome to the November issue of Open Door Here at the MS Trust we’ve just returned from our annual conference for MS health professionals. This year there was a lot of talk about the new Clinical Guideline on MS, which was published by NICE in October (see the news story on p4). The MS Trust conference is a great opportunity for MS specialist nurses, occupational therapists, physiotherapists and other MS health professionals to attend seminars and chat informally about how the guideline will affect the service they deliver for people living with MS. One of the key recommendations in the guideline is that clear, practical information should be available when people are first diagnosed with MS. We recently carried out a survey and found that only 12 per cent of people with MS feel they got all the information they needed when they were diagnosed (see p7). This meant they often had to carry out their own research online, and came across misleading information that added to the stress of diagnosis.

This is why over the last couple of years we’ve been developing Making Sense of MS. This is a new resource designed to help people just diagnosed find the right information at the right time for them. You can read more about how we developed Making Sense of MS in the special feature beginning on p11.

As with all our work, Making Sense of MS is only possible thanks to the support of people like you. Included in this issue of Open Door you’ll find a donation slip. Just £10 could help us deliver the ‘little blue book’ to 10 newly diagnosed people and make a real difference to how they adjust to life with MS. As always we are incredibly grateful for your support.

Now that the clocks have gone back and the dark nights are drawing in we should mention this year’s MS Trust Christmas Cards: an ideal way to send season’s greetings to your nearest and dearest, and a great way to help raise vital funds for our work supporting everyone affected by MS. To order yours see the flyer included in this mailing or visit mstrust.org.uk/christmas Best wishes

Contents 4

News Our view on the new MS Clinical Guideline, plus the latest news on research into progressive MS, Sativex, amantadine, the seasonal flu jab and a record-breaking fundraising achievement

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Research update New research on the effects of dietary salt, flu vaccines and MS fatigue

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The right information at the right time Introducing Making Sense of MS, our new resource for people who’ve just been diagnosed, including interviews with the people who helped us develop it and the people it will help

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Staying smart Professor Dawn Langdon reports on new research into the benefits of cognitive rehabilition and Jeffrey Gingold explains what this means for people living with MS

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‘My mummy has wheels’ BBC journalist Elizabeth Quigley on the challenges of bringing up a four-year-old when you have MS

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Get involved Andy Porter explains why he runs for the MS Trust in the Great North Run 21 Are you ready for this year’s Reindeer Rally?

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15 minutes with Stephanie Scawen The television journalist and keynote speaker at this year’s MS Trust conference answers our questions

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

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 2014 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

S A FEGU A R D I N G MS SER VIC ES

NICE Clinical Guideline ‘fails to provide what people with MS need’ In August we looked at the draft of NICE’s Clinical Guideline on MS and concluded that it could mean a backward step for MS services. While the revised document is an improvement, we believe that it still falls short of a vision of a comprehensive service focused on the needs of people with MS

In October the National Institute for Health and Care Excellence (NICE) published the updated Clinical Guideline on Multiple Sclerosis. This document makes recommendations for the range of care that should be available from the NHS for people with MS in England, Wales and Northern Ireland.

In August we reported on the draft guideline and concluded that, without changes, it could mean a backward step for MS services. Along with the MS Society, we wrote to senior officials at NICE to try to improve the guideline’s content and usefulness.

We’re pleased that some of our suggestions were incorporated, but we feel that the final document still falls short. Though it contains welcome recommendations, there are significant gaps and omissions. Overall, we believe it demonstrates a lack of ambition to provide what people with MS need: a genuinely comprehensive description of best practice in MS care.

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Clear, practical information We strongly support the recommendations on providing clear, practical information for people with MS, especially at the point of diagnosis. We also welcome the emphasis on the role of the multidisciplinary team in the management of MS. Allied health professionals with expertise in MS, such as physiotherapists and occupational therapists, are crucially important to people with MS, and we call for these roles to be fully recognised for their value, and for improvements in availability and timely access to these services.

Comprehensive annual review The guideline also recommends that people with MS should have a single point of contact and a comprehensive annual review conducted by a healthcare professional with expertise in MS. These are both very positive points, but we are disappointed that the guideline fails to emphasise that MS specialist nurses are ideally placed to deliver these recommendations.

We believe that the availability of MS specialist nurses and Though their central role in the the guideline delivery of holistic care is contains welcome a key indicator of overall recommendations, service quality.

there are significant gaps and omissions

Best practice Overall we feel that the updated guideline fails to pull together its recommendations into a comprehensive description of best practice in MS care.

This was a strong feature of the 2003 guideline and its loss is disappointing and weakens the value and ultimately the impact of the 2014 revision.

NICE is now in the process of drawing up Quality Standards for MS as a follow up to the guideline. Quality Standards are designed to drive and measure improvements within a particular area of care. We think this is an excellent opportunity for NICE to work with the whole MS community to raise the bar and provide all those working in MS with the tools to deliver the most appropriate services, and so continue to improve the lives of everyone affected by MS.

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

For more on all symptoms, drugs and treatments see our A-Z of MS: mstrust.org.uk/atoz

What did we want to see in the guideline?

Amy Bowen, the MS Trust’s Director of Service Development, explains what’s missing from the NICE Clinical Guideline Why does the MS Trust think the guideline falls short?

We think the guideline doesn’t deliver for people with MS because it fails to bring together its recommendations into a comprehensive description of best practice in MS care. We would also like to see further recognition of the role of specialist nurses in delivering recommendations, such as the annual review and as the single point of contact for the MS patient.

What do you think about the failure to recommend Sativex and fampridine?

Sativex is a licensed medicine for treating people with moderate to severe spasticity due to their MS. We think that people with MS should have access to treatments that are safe and effective. However, we think these treatments should be part of a wider spasticity management plan, involving physiotherapists and occupational therapists. The guideline doesn’t acknowledge the importance of these roles and this could mean that spasticity services are developed without the most basic elements.

This is just one example of how the guideline fails to

deliver an overview of best practice in MS care.

We are also disappointed that fampridine has not been considered by NICE because, in some cases, it can be an effective treatment for MSrelated walking problems.

However, as with the case of Sativex, this is just one part of the new guideline and we believe there are wider issues which NICE needs to take into account and where the guideline fall short.

News Wales says yes to Sativex but no to fampridine The All Wales Medicines Strategy Group (AWMSG) has approved Sativex as a treatment of MS-related spasticity on the NHS in Wales but ruled that fampridine (Fampyra) is not a cost effective treatment for MSrelated walking problems.

Neither drug has yet been appraised by the Scottish Medicines Consortium (SMC) for use by the NHS in Scotland.

In the absence of an appraisal by the regulators, decisions on whether or not to fund a treatment are taken by the individual CCGs or Health Boards. This has resulted in patchy availability of Sativex and almost no access to fampridine across the UK.

Changes to amantadine

Amantadine (Symmetrel, Lysovir), a drug used to treat What happens next? fatigue in people with MS, The new guideline is an has changed supplier. Auden improvement on the previous Mckenzie (Pharma Division) Ltd draft, particularly the will now supply the drug. recommendations on clear and Once the existing stock practical information, the role has been used, there will be a of the multidisciplinary team change in the packaging and and the recommendations that the branded name will no longer people with MS should have exist. Instead, amantadine a single point of contact and will only be available in its annual review. generic form – amantadine However, we believe hydrochloride. there are still significant Earlier this year people Keep up to date with gaps and omissions with MS reported which need to be all our work towards problems accessing addressed. The MS safeguarding MS services: amantadine. We’ll Trust wants to work continue to monitor mstrust.org.uk/ constructively with NICE availability of the drug action-for-MS and other organisations with the new supplier. to address these issues.

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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News MS RESEARCH

MS Trust guide to managing bowel problems commended

New research into progressive MS > €22 million to be invested globally over next six years

The Progressive MS Alliance, which coordinates global research into progressive MS, has announced its first round of research grants to investigators in nine countries, with the goal of removing barriers to developing treatments for progressive MS. In the UK alone the grants will fund research projects in London, Cambridge, Plymouth and Edinburgh.

This first round of funding is the start of an ambitious programme that will see a total of €22 million invested in progressive MS research over the next six years.

The funding will also help forge international collaborative research networks, supporting research already underway and stimulating new research.

The first grants are short-term pilot studies to begin filling knowledge and infrastructure gaps

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such as identifying and testing potential treatments; understanding nerve degeneration; and building databanks and biobanks — repositories of biological samples for use in research — to better understand longterm imaging, genetics, and outcomes associated with progressive MS. These pilot studies have terms of one to two years.

The first 22 projects will focus in six main areas: • clinical trials and outcome measures • biomarkers of progression • gene studies • rehabilitation trials • pathology of progression • developing To read more about new the Progressive MS models of Alliance visit disease

progressivemsalliance.org

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Managing your bowels: a guide for people with MS was commended in the 2014 British Medical Association Patient Information Awards in September.

The awards encourage the production, dissemination and evaluation of accessible, evidence-based and welldesigned information which promotes greater awareness and understanding of health matters and patient choice.

Managing your bowels gives an insight into why bowel problems can be part of MS and provides a practical approach to management. It includes comments and tips from people with MS who know what it is like to live with bowel problems.

Read the book online at mstrust.org.uk/bowels or order your copy on p23.

Seasonal flu jabs available now If you have MS, are over 65 or if you’re the main carer of a disabled person, you’re entitled to the seasonal flu jab.

If you have MS, the fever associated with the flu infection can lead to a worsening of symptoms and greater risk of relapses. If you haven’t already heard from your GP, contact your surgery to make an appointment.

To read more about the effectiveness of the flu jab if you have MS see p9.

News M S RE S E A R C H

Only 12% get full MS info at diagnosis > Research finds there is still a huge information gap when people are diagnosed with MS > MS Trust launches new resource to meet the needs of people newly diagnosed with MS As few as 12 per cent of people with multiple sclerosis are given the information they need at the time of diagnosis, according to new research published by the MS Trust.

The research found that 72 per cent of people with MS said they would have been less stressed if they had been given the right information when they were diagnosed.

Just under two-thirds of people surveyed in the report believed that they could have avoided misleading information which left them feeling scared and despondent about their future.

In response to this information gap, we’ve produced a new resource to help people who have

recently been diagnosed. Making Sense of MS has been developed in partnership with people with MS and the clinicians who work with them, to provide positive and practical introductory information at the point of diagnosis. The resource is available in a flexible, personalised format, allowing people to access information that is right for them.

The resource will also help neurologists meet the new guidance from the National Institute for Health and Clinical Excellence (NICE), which clarifies their mandate to provide high quality information at the time of diagnosis.

Sarah Joiner, Vice Chair of the MS Trust said: “I am thrilled with

the new Making Sense of MS resource. It means that people like me get to ask the questions that matter most to them and can take all the time they want to understand the answers. They can share it with family, friends, workplace. I believe this pack will be essential to people coming to terms with their new diagnosis.”

Find out more about

Making Sense of MS in our special feature starting on p11

Jo is a record breaker!

MS Trust fundraiser Jo Rodda has broken the world record to become the fastest woman to complete the Enduroman Arch to Arc Ultra Triathlon. This event sees racers running, swimming and cycling 289 miles from Marble Arch in London to the Arc de Triomphe in Paris. Jo completed this incredible challenge in 78 hours 39 minutes, making her the third fastest finisher overall.

Only 21 people (including Jo) have ever finished the race Jo took on this challenge in honour of her friend Simon who has MS. “Early on, I decided that I wanted to do something to raise money for the MS Trust by completing some kind of endurance challenge,” said Jo. “The MS Trust is a charity that helped to support Simon and his family right from the start of his illness and so it seemed like a logical choice.” We would like to say an extra special thanks and congratulations to Jo, who trained for over a year to take on this challenge and has raised over £31,000 (including Gift Aid) to support the work of the MS Trust.

Feel inspired? Find out how you can get involved on p20!

Jo Rodda, second from left, and her friend Simon Malyon, far right, at the Arc de Triomphe in September

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Research update

Keep up to date with the latest MS research by signing up for our weekly email mstrust.org.uk/e-research

MS AND DIET

Does eating too much salt affect your MS? Salt is essential in keeping our bodies working, but too much salt can lead to high blood pressure. This study looked at whether the amount of salt you eat also affects your MS

Authors Farez MF, et al Title Sodium intake is associated with increased disease activity in multiple sclerosis Journal Journal of Neurology, Neurosurgery & Psychiatry 2014 Aug 28 [Epub ahead of print] >> Read the full study: tinyurl.com/MS-dietsalt

The study The researchers studied 70 people with relapsing remitting MS (RRMS) in Argentina for two years. Each participant had several MRI scans to assess the number of lesions and the researchers collected information about their lifestyle and the number of relapses they had. The researchers tested urine and blood samples to work out the amount of salt in the participants’ diet and their levels of vitamin D.

The results After taking into account the participants’ age, gender, how long they’d had MS, drug treatment, vitamin D levels, body mass index and whether they smoke, the study found a relationship between salt intake and increased disease activity.

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Those participants who ate a high level of salt had more relapses, more lesions on their brain scans and were also at increased risk of developing further new lesions, than those participants who consumed a low level of salt.

What does it mean?

The results suggest that higher salt intake may be associated with an increase in relapses and lesions in people with RRMS. However, this was an observational study, so although it can show relationships it cannot prove that salt is the reason for the results observed.

The researchers conclude that further studies are needed to investigate if reduced salt diets could benefit people with MS.

How can you reduce the salt in your diet?

The recommended daily amount of salt for adults is 6g – that’s about one tea spoon.

However, around 75 per cent of the salt we eat is already in everyday foods such as bread, breakfast cereal and ready meals.

There are a few simple ways you can keep an eye on your salt intake: • When you’re food shopping, look out for low-salt options and check the labels of tinned food for added salt.

• When you’re cooking, try using black pepper, herbs and spices as alternatives to salt for seasoning food.

• When you’re eating out, consider alternative to salty meat or cheeses, and ask for dressings on the side of your salad.

Reducing your salt should always be part of a balanced diet. If you have MS, a poor diet To find out more can make your fatigue read our factsheet on and weakness worse.

MS and diet: visit A balanced diet can mstrust.org.uk/diet help with MS bowel or order on p23 and bladder problems.

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Research update MS AND DRUGS

Do flu vaccines work if you have MS and do MS drugs alter their effectiveness?

Vaccination is the best way to prevent diseases like flu.

This study reviewed research into flu vaccination in people with MS and looked at whether taking a DMT which affects the immune system made a difference Authors Pellegrino P, et al Title Efficacy of vaccination against influenza in patients with multiple sclerosis: the role of concomitant therapies Journal Vaccine 2014;32(37):4730-5 >> Read the abstract: tinyurl.com/ms-flu-vaccine

The study

results too mixed to confirm their effect on flu vaccination.

Some of these results suggested that vaccination may offer less protection from the flu than it should in people taking one of these DMTs, but it still gave some protection.

This study was a review that looked at previous research into the effectiveness of flu vaccination on people with MS taking disease modifying therapies (DMTs). As many of the DMTs work in different ways in the body, the authors did a separate analysis of the evidence for each drug.

What does it mean?

The results The study found that vaccination was effective in people with MS who were not taking a DMT, and offered protection from flu infection. Although DMTs affect the immune system, most of the drugs did not significantly change the effectiveness of flu vaccination. Vaccination was protective in people taking beta interferon (Betaferon, Extavia, Avonex and Rebif) and teriflunomide (Aubagio). For glatiramer acetate (Copaxone), natalizumab (Tysabri) and fingolimod (Gilenya) the studies were either too small or the

This study showed that the vaccination immunises people with MS against the flu, and that most of the DMTs did not stop the vaccination from being protective against flu infection.

As there was only a small amount of research for some of the DMTs, the authors suggest further studies are needed to confirm the effectiveness of flu vaccination.

Should you have a flu jab if you have MS? Flu can be a severe infection that can make MS symptoms worse, trigger a relapse or even result in some potentially serious health complications. So if you have MS, you’re advised to have a jab so you’re protected against the common strains of winter flu. The seasonal NHS flu vaccination programme starts in September every year. If you haven’t been offered the jab already, call your GP to book a vaccination appointment. To read the latest NHS information about the flu jab visit tinyurl.com/flujab14

To read more about flu and MS visit mstrust.org.uk/flu

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Research update M S A N D FAT I G U E

Dealing with MS fatigue: does exercise, education or medication work best?

Fatigue is a common MS symptom and there are various ways of treating it. This study examined existing research to find out which was the most effective

Authors Asano M, Finlayson ML Title Meta-analysis of three different types of fatigue management interventions for people with multiple sclerosis: exercise, education, and medication Journal Multiple Sclerosis International 2014;2014:798285 >> Read the full paper: tinyurl.com/ms-fatigue-review

The study The researchers examined 25 previous studies that investigated treatment of MS fatigue. The studies included a total of 1,499 people with MS and covered three types of treatment: • exercise, including aerobics, aqua-aerobics, climbing and yoga • education, including cognitive behavioural therapy, mindfulness and energy management programmes • medication, including amantadine

The results The researchers found that exercise and education programmes appear to have a stronger and more significant effect on reducing the impact or severity of fatigue compared to medications such as amantadine. However, the researchers point out that the effects of exercise and education vary and not everyone benefits from a reduction in fatigue after these treatments. Additionally

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as there were so many types of treatment, it is difficult to draw any conclusions as to what exactly are the best components for treating fatigue. For example, there were 10 trials looking at exercise, but it is not clear which specific exercises work best.

What does it mean?

The researchers suggest that exercise and education programmes should be the first treatment choice for people with MS fatigue. They conclude that medications are important, but, as there are many causes and consequences of fatigue, drugs alone often don’t enable people with MS to manage their difficulties. They recommend that people with MS experiencing fatigue should consider a range of treatments with their health professionals, including exercise, education and medication, to successfully manage fatigue.

Managing fatigue Fatigue is one of the most common symptoms of MS and can have a major impact on your life.

Researchers still don’t understand exactly what causes MS fatigue but it’s thought it involves a combination of factors, including slowed nerve messages and muscle weakness.

This means there are a number of ways of dealing with MS fatigue. Most management techniques involve helping you conserve your energy so you can use it in the most effective way throughout the day.

This could mean making sure you get enough sleep, stay active and relax effectively.

But it’s also about planning ahead, prioritising and delegating some of the things you have to do in the day. Your health professionals can help you find what works best for you.

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

To find out more about managing your fatigue visit mstrust.org.uk/fatigue or order our free book on p23

M AK I NG S E NSE O F MS

The right information at the right time for you This month we launch Making Sense of MS, our new resource for people newly diagnosed with MS. This project has been two years in the making and we hope it will make a real difference to how people deal with diagnosis and find information that’s right for them. On this page Jane from our information team explains how we developed the project, and over the coming pages we talk to people with MS who played a part in the development of the resource, the health professionals who will deliver it and one person it’s already helped WORKING IN THE MS Trust information team, I talk to lots of people who have just been diagnosed with MS. They call us with worries and questions.

All too often, we talk to people who have been given very little information about MS or, sometimes, no information at all.

We began the Making Sense of MS project because we wanted to develop better resources for people who are diagnosed with MS, and reach them as soon as possible after diagnosis. We believe this can make a huge difference to how people adjust to life with MS and can help them make the decisions that are right for them.

We began back in 2012 by commissioning research into what information was (or would have been) most helpful around the time of diagnosis.

We interviewed a wide range of people living with MS and they told us that, because everyone’s experience of MS is different, and everybody deals with it in different ways, any information we produced needed to be flexible. You

should be able to choose as much or as little as you want or need, on any particular topic at any particular time. They also wanted information that was positive, practical, up to date and available in print and online.

The research was a great start but we needed to think about how to turn the results into good, well designed resources.

So we held a workshop with people with MS and their families, health and social care professionals and designers of health information.

From these conversations we decided that everyone should be given essential, introductory information at the point of diagnosis and that further information should be available in a ‘pick-and-mix’ format so that people could choose what they needed. In the light of this, we developed Making Sense of MS as a small, discreet, introductory booklet and range of information sheets that people could look up and order at the time that’s right for them. You can see how the resource works on p12.

We’re proud that people living with MS have been involved throughout the whole project. You’ve filled in surveys, taken part in focus groups and interviews, responded to blogs, and reviewed the work in progress. You, your families and friends have raised the funds that have made the whole thing possible. You even helped us come up with a name for the whole thing!

Now that Making Sense of MS is published, many of you are helping us to spread the word.

We’re incredibly grateful for all your work and support.

Thanks to you, we think Making Sense of MS will make a huge difference to the thousands of people who are diagnosed with MS every year, and to everyone who wants MS information In a survey of people that works for with MS this year, 40 per them.

cent of respondents felt they received none of the necessary information at the time of diagnosis

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Ma k in g S en s e o f M S

Making Sense of MS: how it works The information in Making Sense of MS is layered so that you can get the basics when you’re first diagnosed, and then dig deeper to find out more information about what’s most relevant to you at the time that’s right for you.

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The little blue book

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The core information pack

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The full range of resources in print and online

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Help us spread the word!

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If you’ve just been diagnosed, the little blue book is a good place to start learning about MS. It provides a brief introduction to multiple sclerosis and answers the questions most commonly asked after diagnosis. It will also point you to further information if, and when, you’d like it.

This folder contains introductory information that may be helpful if you’ve been recently diagnosed with MS or even if you’ve been living with MS for a while. These sheets can support you to learn about MS, the lifestyle and treatments which can help and the health professionals who will support you.

The information sheets included are: About MS, What happens after diagnosis?, Making the most of appointments, Living well with MS, Sources of information and support and Publications from the MS Trust.

If there are particular subjects you would like to know more about, you can dig deeper and access detailed information about every aspect of living with MS by ordering additional information sheets or going online to mstrust.org.uk/msoms Even if you’ve been living with MS for a while this information could help you find out more about the issues that really matter to you. The full list of additional info sheets is: Telling people, Working and studying with MS, Relapsing remitting MS: an introduction, Primary progressive MS: an introduction, Secondary progressive MS: an introduction, Treating symptoms, Disease modifying treatments: an introduction, MS and your feelings, Research and MS, MS and Life Choices and A short guide to understanding my MS (to give to others).

We want to reach as many people as possible with positive, practical MS information – and you can help. You can read and order all the elements from Making Sense of MS at mstrust.org.uk/msoms or on p23 and you can find out about how you can spread the word online and in your local community at mstrust.org.uk/sense For more information email makingsense@mstrust.org.uk or call 01462 476700.

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

M aki n g Sen s e of MS

“It’s like the first branch for you to grab hold of and think: what now?”

Karen and Tracey both live in Sheffield, have MS and took part in the initial focus groups that helped us work out how to develop Making Sense of MS. Here they explain why they took part, what they make of it, and how they feel it will make a difference KAREN AND TRACEY, both from Sheffield, first met when they took part in a course for people newly diagnosed with MS at their local hospital in 2009.

“We’re lucky,” says Tracey, “Our hospital is quite forwardthinking on MS and we’ve had quite a lot of support. We went on a course, we had lots of information given to us, and our MS nurses are always very proactive and on the end of the phone whenever you want them.”

So when they heard that the MS Trust was doing research into what kind of information people with MS need, they were keen to get involved.

“I just thought – not everyone’s as lucky as us. I know what it was like when I was diagnosed. You feel lost,” says Karen. “One of the things I found difficult was not knowing where to go to get information.

Even after I found the MS Trust website, there were still things I couldn’t find,” says Tracey. “I didn’t know about occupational therapy, for example. I only found out about when my physiotherapist mentioned it might help.”

By taking part in one of our focus groups, Karen and Tracey helped shape Making Sense of MS. Now they’ve seen the finished product they think it could make a vital difference to people being diagnosed today.

“I think it’s really good,” says Karen. “I like that you can pick and choose the information you want because there’s so much out there, it’s a bit overwhelming.”

“I really like the little booklet which gives you the basic facts – the things you really want to know when you’re taking it in yourself. It is a bit of shock.

The booklet is like the first branch for you to grab hold of and think: what now? It’s about getting information at your own pace rather than being given a massive wodge of information and thinking – which bits do I read, which bits apply to me?”

Do they think it would have made a difference for them?

“It would – definitely,” says Tracey. “When I was diagnosed I went through a phase of not wanting to know anything at all.

When I eventually decided I did want information, I think I went a bit too much the other way.

I wanted to know everything. I ended up looking at some online forums which were really quite distressing. So you’ve got to be very careful. Making Sense of MS points you in completely the right direction.”

“The folder is really useful,” says Karen. “You know just where to go for more information. You can go online and print stuff or order it and you’ve got somewhere to save it. I ended up getting a folder

Tracey (middle myself and putting everything in of back row) and it because there’s loads. And my Karen (right of mum was really interested so I front row) with their was always passing her leaflets team that took part to read. It’s nice to be able to in Jump in June to give one folder that explains raise funds for the MS Trust what MS is and how you can live with it. It’s good that it’s ready to put information in as you get hold of it.”

Since helping us develop Making Sense of MS, Karen and Tracey, plus some other friends they made on the newly diagnosed course, decided to go even further in supporting our work by organising “MS Trust info was a sponsored of real value to me. parachute jump I wanted to give last year. “MS Trust something back” information was of real value to me,” says Karen. “I feel it’s important they can continue to produce it, so I wanted to give a little back.” And what would they say to anyone thinking about taking part in future MS Trust projects? “Just do it,” says Tracey. “Definitely.”

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Ma k in g S en s e o f M S

“You’re tailoring information for individuals.

I think it’s brilliant!”

Debbie Quinn and Gail Clayton are two of the MS specialist nurses we’re working with to find the best way of getting information to people as soon as possible after their diagnosis.

We asked them how Making Sense of MS will help them help more people living with MS “EVEN COMPARED TO just ten years ago, there is now much more information for people with MS, and many more people have access to MS specialist nurses,” says Debbie Quinn, an MS specialist nurse in Northamptonshire. “But I think there are definitely still information gaps when people are diagnosed with MS.” “This can be because it can take quite a while of seeing lots of different health professionals before you finally get a confirmed diagnosis. And also because the neurologist who does give you a diagnosis might not be an MS specialist, and so might not be the best person to explain what MS is and how you can deal with it.”

Can a bad experience at diagnosis have a long-term effect? “I think it has a huge impact,” says Gail Clayton, an MS specialist nurse based in Cardiff. “I think giving people accurate, truthful information at “Making Sense the time of of MS is an excellent diagnosis addition to the resources is vital. available for people newly Often by the time diagnosed with MS. It is simple, they clear and easy to understand.

We will definitely be using it.”

Dr Trevor Pickersgill, consultant neurologist, Cardiff and Vale University Hospital

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get to us at the clinic they’ve Googled all sorts of weird and wonderful things so I think giving people accurate information and giving them the opportunity to ask questions makes a big difference.”

Debbie agrees: “People come to terms with things a lot easier if they know which way the land lies. It can be hard to tell people what the future holds for them with MS, but you can say – these are the basic facts, and these are the answers to some common questions. That’s much better than being told ‘you’ve got MS, see you in a year’.”

So Debbie welcomes Making Sense of MS. “I really like it. I think it’s very simple, it’s very easy. It’s nice to be able to give something really small to somebody, and, if they want to, later on they can make a decision about what information they really want. That’s good because you’re tailoring it for individual people. I think it’s brilliant. It’s succinct. It’s got everything you want but it’s not overwhelming.”

“I’ve been working as an MS nurse for 20 years,” says Gail. “When I first started if you had MS and ordered some information you might get a whole package of booklets land on your doorstep, including information about a whole load of symptoms that might not affect you right now, if ever.

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

You might be 18 and you’re suddenly getting information about continence problems that don’t affect you. It’s a question of making sure the information is relevant. I think Making Sense of MS does this perfectly.”

What difference will Making Sense of MS make to the work of MS nurses? “We kind of developed our own packs a few years ago,” says Debbie. “With the help of some volunteers we put together a basic introduction to MS, and where people could go for help. We don’t have to make packs up anymore do we? So that means we can spend more time with people with MS. It just makes it easier. Eventually we’d like people to be able to pick them up from our information stand, so even if they’re not ready to speak to someone, they’ve got information anyway. What you find as an MS nurse is everybody with MS is different.

Some people want loads and loads of information. Some people actually want nothing.

But as long as they’ve got that pocket booklet to take away, it gives them a choice. And they can come back in six months time, in a year’s time, and get what’s right for them.”

M aki n g Sen s e of MS

“It told me lots of things I wish I had known before” Sarah was diagnosed with MS in August this year but received no information about what MS is and how she might deal with it. We sent her the Making Sense of MS booklet and core pack of information and asked her what she thought THE FIRST TIME I heard the word MS was when my GP referred me to a neurologist.

“They’ve found something on your scan that might be MS,” he said.

He didn’t tell me what MS was. He said the neurologist would tell me more. And he said “don’t go on Google”.

But I did Google! It’s really hard not to! But I couldn’t find anything that fit in with the symptoms that I had. All I could find were people who had disabilities and people who had really bad fatigue. And I couldn’t see how any of it applied to me.

In the end I discovered I had MS when my MS nurse phoned me. I got the official letter a few weeks later. I don’t think anyone ever really explained to me what MS was. I never got a leaflet or anything.

I probably would have liked someone to sit down with me and say: this is what it is, this is what it means, this is where we’re going to go from here. But everything went really quick after that.

My MS nurse was brilliant. She was very practical – I like that. I don’t like people mollycoddling me or saying we’ll look into this or let’s wait and see. But the information I received was all about my treatment rather than MS itself.

I didn’t tell loads of people.

Because one of the first things people do is ask you questions that you don’t know how to

answer. You always get people who say “Did you know, you’ll pass it on to your children?”. You have to say, well it’s not quite like that, but thank you for looking.

When the MS Trust sent me Making Sense of MS I immediately learned something new: I need to tell the DVLA! But it also told me lots of things I wish I’d known before – like how to answer some of the questions that people might ask you. I felt like it was talking me through the process that I’d just been through. If I’d read this before I think it would have really helped me to expect the next step. I was reading it thinking – I’ve just done that, that’s just happened.

I think Making Sense of MS would definitely have helped me deal with my own diagnosis.

It might have been put to one side at first, because everything started at 100mph. But once everything slows down, things start popping into your mind.

Should I be taking vitamins? What happens if I get a cold? Maybe I should ask somebody about this or that? So it’s nice to have something to refer to.

As it was I didn’t have anything apart from the internet, really.

Which is huge and full of so many different experiences, and I felt like none of them applied to me!

There were some things in the pack which don’t necessarily apply to me now, but you do think – will it apply to me later

on? It’s good to have something you can select information from.

And you can go back in a year’s time and think maybe that wasn’t relevant, but I can choose to read it now. It’s like a catalogue – you can flick through it and think I want to look at that, that and that, and look up things when they become relevant, so you’re not bombarded with loads and loads of stuff.

Our survey of people Because that’s what with MS suggests that the internet does.

better information at the time of diagnosis can make a real difference for people living with MS

Read Sarah’s blog at sarahsmsblog. wordpress.com

77%

said it would have made diagnosis less stressful

70%

said it would help them talk to friends, family and work

78%

said it would help them ask their neurologist more relevant questions

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

15

MS A N D CO G NI T I O N

Staying smart About half of all people with MS have problems at some time with aspects of memory, attention span or concentration. However, there is more and more evidence that cognitive rehabilitation – such as brain-training exercises – can make a real difference in helping you deal with these problems. Below Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London, looks at promising research into MS and memory, while on the facing page, Jeffrey Gingold, who has MS and has written widely about cognitive issues, looks at what this means for people with MS

MANY PEOPLE WITH MS experience cognitive difficulties, and these can impact on a range of activities. Perhaps most seriously, they can affect how well a person can function at work. They can also make disease management harder, including adherence to medication regimes, symptom management, and medical decision making. They can also affect safety when driving and increase the risk of falls. For several decades researchers have investigated what kinds of programmes might be beneficial for cognition in MS and there have been some encouraging hints that rehabilitation by therapists and computer training programmes have positive effects.

However, it is only recently that a study of an intervention to benefit memory in MS has been judged to reach the highest scientific standards, which means the results are convincing. The MEMREHAB trial from the Kessler Foundation has been accepted as Class 1 evidence by the prestigious journal Neurology. The design was a randomised controlled trial, which means that MS patients were allocated on a chance basis to either the MEMREHAB treatment or to a comparison group that met with a therapist, but did not get the key ingredients (imagery and context).

Both groups met twice a week for five weeks.

Sessions lasted 45 to 60 minutes. The intervention was called Story Memory Technique. The treatment group was taught to use imagery to remember things, such as visualisation and pictorial cues.

They were also taught to use context. The whole programme closely followed a manual. The last

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two sessions focussed on applying the techniques to everyday situations.

By the end of treatment, the treatment group was better at learning word lists, on measures of everyday memory and their families reported they were more engaged and organised (formally, apathy and executive function). The memory improvements were maintained at six-month follow up.

A small number of people from both the treatment and comparison group underwent MRI investigations of brain activity. Increased brain activation was demonstrated in the treatment group members immediately after treatment and at six month follow up. The areas of the brain that showed increased activation were the visual cortex, involved in visualisation, and the medial temporal lobe, involved in information acquisition.

It has been known for a while that physical rehabilitation in MS can improve physical function and now strong evidence exists that cognitive retraining can improve memory function in MS. Although MS is a progressive For more about disease, treatments MS and cognition visit can help maintain mstrust.org.uk/cognition function to support or order the factsheet on p23 independence and For practical tips and effectiveness.

Dawn Langdon is a trustee of the MS Trust.

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cognition exercises visit stayingsmart.org.uk

M S an d co gnition

“Engage real hope now...”

Jeffrey Gingold on the benefits of cognitive rehabilitation Validation and hope are precious commodities when you have MS. Even with my optic neuritis, I could see the significance of the MEMREHAB study Professor Langdon talks about on the facing page.

The study confirms that you should push back against your MS by engaging life. Just like with physical exercise, you need to do it for any direct benefit.

In the military they say that the best way to take a bridge is from both directions. For their part, people with MS must first acknowledge their cognitive challenges to better understand how they may cope with rehabilitation techniques. Then they can meet the MS health professionals on the other side of the bridge and welcome the strategies.

Take the bridge from both directions.

Cognitive rehabilitation may not just improve your memory, but can also have a positive ripple effect on other MS symptoms, such as fatigue, emotional wellbeing, and overall quality of life. Future studies will better “Cognitive rehab can establish who will benefit from specific have a positive effect types of training. Don’t just think about it, on other MS symptoms engage real hope now. such as fatigue...”

Sometimes the most devastating MS symptoms are the ones that you didn’t see coming. Cognitive challenges should no longer be in that bucket.

Like many people diagnosed with MS, my limbs numbed and fatigued, my equilibrium threw me to the floor and my vision was failing. Then invisible cognitive symptoms delayed and confounded my thoughts, causing spoken words to be lost, trashing multi-tasking and blocking my ability to recall memories, familiar faces, tasks and locations. My MS cognitive fog leaves me feeling like pieces of my mind are inaccessible.

But when I tried to find out more about MS cognition issues I discovered a real lack of information. I found out that MS cognitive symptoms are under-recognised, and are often under- and mis-diagnosed. I felt like it was an unspoken and invisible disability.

Jeffrey’s tips for staying smart 1. Unclutter your space and mind and use lists to keep track of daily tasks.

2. Follow a personal wellness routine to keep your mind and body active.

3. Enjoy learning new skills to enrich your cognitive reserve.

4. Find out about successful MS cognition techniques, such as those found on the MS Trust’s StayingSmart pages. This site features quick cognition tips and tricks, including helpful videos and successful strategies from people living with MS. 5. Rely on a trusted ‘safety person’ who understands when to pull you away to clear your mind and safeguard your body.

6. Discover what works best for you to take care of yourself by getting answers and ongoing informed treatment for your cognitive challenges.

My MS writings are borne from realising that the best way for me to cope with cognitive setbacks, was to first acknowledge and articulate how MS was interfering with my thoughts. I would never have discovered any coping strategies unless I first admitted these difficulties and found a support network that ‘gets it’.

While taking part in the worldwide discussion around MS and cognition, I have found that people with MS are resilient. Find your passion and fulfill it with complete MS treatment, including both your cognitive and physical symptoms. You should not accept less.

Jeffrey Gingold is the award-winning author of the books Facing the Cognitive Challenges of Multiple Sclerosis, 2nd Edition (Demos Medical Publishing, 2011) and Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis (Demos, 2008).

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

17

PAR E NT I N G AND MS

“My mummy’s got wheels!”

In the last issue of Open Door we featured an article about caring for a newborn baby when you have MS. This issue we hear from the BBC journalist Elizabeth Quigley, about how she finds managing her MS while bringing up her four-year-old son, Matthew.

“MY MUMMY’S GOT wheels!” Matthew says proudly to his friends and in a very matter of fact manner.

Apart from making me sound like I’m a character from the 1970s animation Chorlton and the Wheelies, I’m proud too.

Proud that he’s so accepting and proud that he’s not bothered that I have to use a stick or the aforementioned wheels – my walker with wheels.

Matthew is four now and I definitely think he knows something is different about his mummy.

None of his friends’ parents use a stick or wheels.

But he doesn’t question it. He just accepts it. And so do all the children of the same age. They have no concept of whether they’re supposed to be embarrassed or think something’s odd, they’re just, like: “Wow, what’s Matthew’s mummy got? That’s great! She has wheels to push along”.

The wheels and stick certainly help me to get around more easily but I haven’t yet found anything which makes it easy to keep up with a toddler with seemingly boundless energy!

Matthew races around endlessly, climbs on everything and can easily outrun me to raid the fridge – and he does. That’s not easy for any parent of a toddler; for a parent with MS it’s challenging to say the least.

I’ve learned new negotiating skills in my efforts to address this – although to be perfectly honest, Matthew is definitely better at this than me.

At the end of some particularly intricate discussion over the idea that only one yoghurt is allowed after dinner, I feel very pleased with how it’s turned out. Until I realise that I have agreed to him taking three in return for him getting his own

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Elizabeth and her son Matthew © DC Thomson

spoon out of the cutlery drawer and waiting for me to get into the kitchen before he eats them.

I know which one of us would make the better UN negotiator – and he’s three feet tall.

I’ve learned we sometimes need to do things differently. I can’t run around hitting tennis balls back and forward with Matthew – but I can sit down opposite him in the garden and play swing ball with him quite happily. Of course I wish I could play tennis or kick a football around with him – but, to be honest, even without MS, I was pretty atrocious at those games.

And Matthew does seem to understand that I can’t run after him. He seems to realise that if he wants us to go anywhere, I’ll need my stick or wheels.

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Paren ti n g a nd MS In his early toddling days, though, he did give me a few potential scares – although he very quickly turned round and came back to find me “Everyone has when he spotted I wasn’t following challenges to immediately behind him. overcome whether or Matthew is very independent not they have MS” which definitely has advantages.

And disadvantages. He’s not keen on holding my hand but he’s probably being wise beyond his years.

I’m unsteady on my feet at the best of times, so I could easily be pulled over if he starts to go in a different direction. He might not hold my hand when we’re out – but he does hold firmly onto the side of my wheels when we’re near a road or we’re going somewhere unfamiliar.

And in future years, how will I explain to Matthew that his mummy has this baffling condition called multiple sclerosis?

I’ll tell him that my legs don’t work as well as they used to and that my hands can’t write or draw with pens and pencils as well as they used to, but that it doesn’t really matter.

Everyone has challenges to overcome whether or not they have MS. What matters is not what we can’t do, but what we can. And that is what I keep reminding myself.

Having MS certainly throws up challenges and obstacles. But through it all I try to remember these early years are a time of wonder, joy and frustration – for all of us.

And when I find I’m exhausted, after a night of broken sleep, To order our brain befuddled by endless free publication questions and juggling, I Talking with your kids remind myself that that’s about MS visit not being a parent with mstrust.org.uk/kids MS. That’s being a parent.

For more about fatigue visit mstrust.org.uk/fatigue or order both publications on p23

Tips for dealing with MS fatigue Being a parent can be tiring at the best of times. But combine that with MS and you have a recipe for fatigue. Joanne Hurford is an Occupational Therapist (OT) at the National Hospital for Neurology and Neurosurgery and often helps mums and dads with MS learn ways of conserving energy so they can cope with the demands of work and parenthood. Here she shares some of her top tips.

OTs can’t magically give you more energy or time, but they can work with you to understand your choices and priorities and provide a structured and supportive approach to help you deal with everyday tasks. They can look at a particular task or the overall impact of having to juggle a busy life with MS. OTs focus on helping you adjust the way you do things, and can help you find equipment to make things easier. To find your nearest OT visit mstrust.org.uk/map or ask your GP. Meals: Plan a one-pot meal for the family that can be reheated and eaten by different people at different times. Or better still, cook up a big pot and freeze some for another day. Also, think about using a slow cooker. They can really save on preparation and cooking effort.

Entertaining the kids: Identify your local playgroups, garden centres or soft play centres where the kids can let off steam and you can have a coffee. Having other kids over to play can also take the pressure off you as a parent.

Household chores: Does it need to be done or can someone else do it for you? If not, try and get the kids involved and make it fun. Lots of little ones love a duster or broom in their hands.

Shopping: Internet shopping is the way to go.

You can also avoid the delivery charges with click and collect and pick up last minute things.

Drop offs: Could you share school drop-offs with other parents? If walking and parking is an issue for you, you could try talking to the school to see if they have any parking spaces you could use.

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

19

G E T IN V O LV ED

“The most positive experience imaginable” Andy Porter from Chester (pictured with his daughter Hannah and son Josh) has run the Great North Run six times in aid of the MS Trust, raising more than £7,600 to help people with MS. Here he reflects back on his fond memories of the world’s greatest half marathon A 46-year-old who had barely run since my midtwenties, I signed up for my first Great North Run back in 2007 because it felt like a good thing to do.

A way I could at least help raise a little awareness and money for the MS Trust, a charity I’d only got to know as a result of my wife Kathy’s diagnosis with MS four years previously.

I’ve never really stuck to a fitness regime. My idea of a warm down is a pint of Guinness in Durham City on the way home, and fish and chips at the Coast 2 Coast chippie in Kirkby Stephen. But I played a bit of five-a-side and I walked the dog most days. Surely a half marathon couldn’t be too bad!

This September was my sixth Great North Run, our son Josh’s third and daughter Hannah’s second. The atmosphere on race day is incredible.

People waving and smiling on bridges and by the roadside. It’s like one gigantic Geordie family and they all seem to be rooting for you. Every note is positive, every voice encouraging. Exhilarating and unforgettable.

The guy up on top of his shed with his garden hose spraying down the runners in Hebburn to keep them cool. The strictly unofficial Elvis impersonator belting out ‘Suspicious Minds’. The kids handing out lollies or jelly babies. Everyone looking out for each other; everyone doing it for a reason.

When you think the finish may never come, the road drops and the North Sea is in front of you. One mile to go. One flat, wonderful mile. Then 800m, 600,

20

400… You find yourself breaking into a sprint.

Then as suddenly as it started, it’s over. A mug of hot sweet tea at the MS Trust tent in the Charity Village, a Mars Bar, banana, more smiles, more Red Arrows. Pure euphoria and a sense of real achievement. And I keep coming back, to recapture that feeling, do it again and again.

It is the most positive experience imaginable: so worthwhile in every way. There is something about the heady mix of north-east hospitality and warmth, flawless organisation and that fantastic finale by the sea that make the Great North Run very special indeed. If you are thinking about it, do it. You’ll love it.

Finally, always remember why you are doing it: to help the MS Trust continue to offer hope, support and information for people like my amazing wife, and Josh and Hannah’s amazing mum, Kathy.

We currently have earlybird booking offers for next year’s Great North Run and also for the British 10K London Run. Book before December to secure your place at our special rates!

• British 10K London Run, Find out more 12 July 2015 – book now about all our for just £15 upcoming running • Great North Run, events at 13 September 2015 – book now for £30 mstrust.org.uk/run

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Get i nvolve d

More ideas!

There are loads 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

Suppo everyo rt ne living with M S

Send MS Trust Christmas cards MS Trust Christmas cards are on sale now with fantastic new designs to choose from. Every card you send helps to raise awareness of MS and the MS Trust. mstrust.org.uk/christmas

DIFC Santa Run, London

Are you a teacher, Brown Owl, Scout Leader or parent? We are looking for schools or groups to get involved this winter in the MS Trust’s first Reindeer Rally.

The Reindeer Rally is a great way for young children to get involved in raising money for the MS Trust.

When you sign up you will receive a free fundraising kit which includes a reindeer mask for each child to design and wear for a short sponsored race.

It’s up to you when you decide to hold your Reindeer Rally. Race day will involve the children wearing their masks while taking part in either a short sponsored run or an obstacle course – the choice is yours! The children will use the sponsorship forms provided to raise money for the MS Trust.

Dress up in your free Santa suit and run, jog, walk or use your wheelchair or scooter to get around the 5km or 10km route in Victoria Park on 7 December. mstrust.org.uk/santarun

Monster Ski, Chamonix Ski or snowboard the height of Mount Everest every day in our exclusive Monster Ski challenge, taking place from 13–17 March 2015. mstrust.org.uk/monsterski

London to Paris Cycle Ride Cycling through beautiful English villages and into the stunning countryside of rural France will be an experience you will never forget. Various dates available for rides in 2015. mstrust.org.uk/londontoparis

Prudential RideLondon-Surrey 100 To order your free fundraising kit which includes a reindeer mask for each child, sponsor forms, balloons, posters and a copy of our Kids’ guide to MS, please visit

mstrust.org.uk/reindeer email fundraising@mstrust.org.uk or call 01462 476707 GO REINDEERS GO!

Cycle 100 miles on closed roads from London to Surrey on 2 August 2015. This event is getting bigger and better every year so get on your bike and join in! mstrust.org.uk/ridelondon

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

Open Door November 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

21

15 Stephanie Scawen TV journalist

minutes with

Last year the Al Jazeera TV journalist Stephanie Scawen presented MS and Me, a film about coming to terms with her MS and investigating the significance of the latest MS research. This year she was keynote speaker at the MS Trust Annual Conference, our event for MS healthcare professionals What kind of feedback did you get after MS and Me was broadcast?

The feedback was amazing. Most comments were very supportive of me with lots of comments about how brave I was, which was very flattering as I personally don’t feel brave. Things are just the way they are. I had many offers of snake oil cures and treatments which I just ignored, and many links to an American woman MD’s online video about how she cured her MS by eating bucket loads of kale every day (yuck), which also seemed to be a bit of a scam to me as all she really seemed to be doing was trying to flog her book, rather than exposing her cure to scientific scrutiny. But overall the feedback was amazing.

You said your ambition for the film was “To show people with MS that they can do whatever they want to do. You just have to approach it slightly differently.” Do you think you succeeded?

I hope so. For people who are not disabled or who do not have first-hand experience of dealing with someone with disabilities, it’s very hard for them to imagine what life is like being unable to do things as normal. The idea, for example, of losing a leg in an accident, would be for many people unbearable. But

22

when they are confronted with that reality they get on with it, because you just have to. Look at all the Paralympians who do such amazing things!

When we last spoke you were coming round to the idea of using a mobility scooter or a wheelchair. Did you go ahead with that? If so, how are you finding it?

When my left leg started spasming towards the end of last year it was the most sensible thing to do in the end, as my walking had become so slow and difficult and I was in a lot of pain, so a wheelchair just meant I could get around more quickly and safely. And the sky didn’t fall in as I had feared. Generally people have been very helpful with it. And I get to queue jump everywhere which is good. I’ve had a few ‘exciting’ episodes with my chair which I discussed in my speech. It certainly ain’t boring.

As a journalist do you have any thoughts on how MS – or potential cures – are covered in the media?

Most articles are reasonably balanced, but it annoys me that they pretty much always refer to MS as a crippling disease, as if a diagnosis instantly places you on the scrapheap. For the majority of people it’s not.

There’s an old media phrase “if it bleeds, it leads”, so the headlines will always focus on the best or worst outcome.

“Scientists find cure” or “MS drug kills patient”, for example.

And the headlines talk about a cure as if it will be on the shop shelves tomorrow. I wish I could say journalists should check their facts for accuracy or at least balance, but in this world of 24-hour media the critical details seem to get missed out.

We’re delighted you agreed to speak at this year’s MS Trust conference. Having travelled the world as a journalist, reporting from war zones and scenes of disaster, did the prospect of speaking to a room full of MS professionals hold any fears for you?

No. I was more afraid no one would understand my sense of humour!

Open Door November 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust

To read more about Stephanie and to watch MS and Me visit mstrust.org.uk/stephanie To find out more about our Annual Conference and what it means for people living with MS, visit mstrust.org.uk/ msconference

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 and me: a self-management guide

Talking with your kids about MS

The young person’s guide to MS

The kids’ guide to MS

Disease modifying drug therapy

Sex & MS: men

Primary progressive MS

Secondary progressive MS

Managing your bladder

Managing your bowels

Falls

Living with fatigue

Clinically isolated syndrome (CIS) (revised)

Vitamin D (revised)

Pregnancy & parenthood

Pain

Depression

Cognition

Diet

Stem cells

Books

Factsheets

DVD

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

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