March 2015 Open Door

Quarterly newsletter of the MS Trust

Open Door March 2015

ur Join o ign to a p m a c eryone v e e r su make gets S M y db affecte sible s o p t s the be care

Also in this issue Stem cells and MS: where are we now?

The MS hug: what is it and how can you deal with it?

Can smoking make cognitive symptoms worse?

15 minutes with MS campaigner Emma Rogan

Welcome to the March issue of Open Door The state of the NHS, and how as a country we can ensure everyone receives the best possible care, is going to be high on the public agenda this year. At the MS Trust we believe that MS services are a crucial part of this care, and that everyone affected by MS should have access to an MS specialist.

That’s why with this issue we’re launching our new campaign, The Heart of MS Care. Starting on page 11 you can find out why we need more MS specialist nurses and physiotherapists, occupational therapists and other therapists with expertise in MS, what the MS Trust is doing about it, and how you can get involved and make a difference.

MS Awareness Week, which this year runs from 27 April-2 May, is an ideal time to spread the word and also to raise vital funds by taking part in our Be Bold In Blue activities. You can find out more about all the ways you can get involved elsewhere in this issue or by visiting mstrust.org.uk/awareness.

Also in this issue, our trustee, Professor Neil Scolding reports on the significance of the latest stem cell research, Jane from our information team looks at how to manage the “MS hug” and MS campaigner Emma Rogan introduces a new programme designed to promote work opportunities for people living with MS. As always we’d love to hear your views on any of the stories or issues raised in the issue of Open Door – call 01462 476700 or email opendoor@mstrust.org.uk with your thoughts.

Contents 4

The latest news on neurological services, stem cell research and MS drugs, plus our plans to redevelop MS Decisions

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The heart of MS care Introducing our new campaign to make sure that everyone affected by MS can access the best possible care

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Stem cells: where are we now?* Professor Neil Scolding reports on the state of play in stem cell research

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What is… the MS hug?* Jane from the MS Trust information team looks at the MS hug and how you can manage it

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Get involved David Middleton explains why he and his friends have decided to row across the Atlantic for the MS Trust, plus all the latest opportunities to make a difference with the MS Trust

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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

Research update New research into vitamin D, relapses and the effects of smoking

Best wishes

Pam Macfarlane Chief Executive, MS Trust

News

15 minutes with Emma Rogan The MS campaigner tells Open Door about the European MS Platform’s Believe and Achieve campaign to improve employment opportunities for young people with MS

Articles marked by an asterisk have been produced in accordance with the Information Standard

Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353 Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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News

Affected by any of these news stories? Call our info team: 0800 032 3839 or 01462 476700 from a mobile Keep up to date with the latest MS news by signing up for our weekly email round-up mstrust.org.uk/newsalerts

For full references see mstrust.org.uk/information/news

Encouraging results from stem cell trial

New drug approved in Scotland

Interim results suggest the treatment could eventually be an effective way to manage relapsing remitting MS

HALT-MS is a five-year study following 24 people in hospitals across the USA. Participants had all experienced disabling relapses while on disease modifying drugs in the 18 months before the start of the study. Each person had stem cells collected from their bone marrow before receiving chemotherapy and immunosuppressive drugs to wipe out their immune system.

The stem cells were then transplanted back. Participants were monitored in hospital for two months while their immune systems recovered.

After the first three years of the study only three participants had had a relapse and 19 showed no signs of an increase in disability, no relapses and no new lesions on MRI scans. None resumed disease modifying drugs after treatment.

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Treatment with the drugs used in this study is associated with significant side effects. Although no unexpected adverse events were seen, most participants experienced infections and gastrointestinal problems.

Seeking stem cell treatment other than as part of a properly regulated clinical trial with regular monitoring and support is not recommended. We are not aware of any stem cell trials currently recruiting in the UK.

Read more about the state of stem cell research in Professor Neil Scolding’s special Open Door report on p16

The Scottish Medicines Consortium (SMC) has approved peginterferon beta 1a (Plegridy) as a treatment for relapsing remitting multiple sclerosis on the NHS in Scotland.

Peginterferon beta 1a is a new treatment, formed by adding polyethylene glycol to interferon beta 1a to allow the drug to remain longer in the body. As a result, it is injected once every two weeks rather than the more frequent injections required with the other interferon beta drugs.

Clinical trials have shown that peginterferon beta 1a has a similar effect to interferon beta 1a (Avonex), reducing the relapse rate by about a third compared to placebo. The side effects of the new drug are also similar, with some people experiencing redness at injection sites and flu-like symptoms.

The regulatory bodies for England (NICE), Wales and Northern Ireland have not yet considered Plegridy.

To order our stem cell factsheet see mstrust.org.uk/ stemcells or the order form on p23

Open Door March 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust

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

News

Fingolimod not effective in primary progressive MS Fingolimod (Gilenya) was no better than placebo at reducing measures of progression in people with primary progressive MS The INFORMS trial was the largest study so far in primary progressive MS. 970 people in 18 countries were treated with fingolimod or placebo for three years and different aspects of disability were regularly measured.

In December, a press release from Novartis, who manufacture fingolimod and ran the trials, said that there was no difference in the risk of progression

Campaigner with MS dies The MS Trust was saddened to hear of the death of Debbie Purdy shortly before Christmas.

Debbie was a formidable campaigner who worked tirelessly to raise awareness of the impact MS can have on a person’s life.

Although often linked to the case for clarity around assisted suicide, Debbie Read Amy Bowen’s campaigned on many blogpost on Debbie’s issues and was always legacy at willing to get involved mstrust.org.uk/ and fight for the rights of others. debbiepurdy Debbie was a great friend to the MS Trust and an inspiration to the MS community. She approached every challenge with energy, enthusiasm and an uncompromising spirit. She will be sadly missed.

between the treatment and placebo groups. More detailed results of the study will be presented at a scientific conference later in the year.

Fingolimod is already available as a treatment for people with relapsing remitting MS. INFORMS was prompted by evidence that suggested that the way the drug works might also benefit people with progressive MS.

There has been an increasing focus of research on progressive forms of MS in recent years. In 2012 an international group of MS organisations and researchers set up the Progressive MS Alliance to encourage and promote research. Studies are in development following the awarding of the first grants in the summer.

Secondary progressive MS trial starts recruiting

MS Decisions

Researchers have started to recruit 440 people with secondary progressive across the UK for a trial that will look at drugs that may limit the progression of MS. The trial (called MS-SMART) will involve three drugs that are currently licensed for other conditions – fluoxetine for treating depression, riluzole for motor neurone disease and amiloride for high blood pressure and heart disease. Studying drugs where the safety profile is already known potentially shaves years off the time usually needed to test newly-developed treatments.

Previous studies have suggested that they might be neuroprotective – protecting nerves from further damage from MS. For more information on the study go to ms-smart.org, which gives details of the hospitals involved in the study and more detail on taking part.

Since it was launched in 2004, many people have used the MS Decisions website to help them choose between the self-injected drugs for relapsing remitting MS. The site is now in need of updating to take account of the new drugs that have become available in recent years.

We’re pleased to announce that the MS Trust is now starting on a project to redevelop the MS Decisions website to include the full range of current drugs. We will be working with a number of MS nurses, neurologists and people with MS to develop a site that allows people to understand both the medical and lifestyle aspects of treatments and to think through their options.

More news about the development of MS Decisions will appear in future issues of Open Door and at mstrust.org.uk

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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News Trishna takes to the dancefloor

People with MS are ‘invisible’ in most CCGs A report finds ‘significant variation’ in neurological services and that more than half of people with a neurological condition experience problems accessing treatment or care

We’re delighted to reveal that Trishna Bharadia has been chosen to participate in The People’s Strictly on BBC One as part of this year’s Comic Relief campaign. Trishna recently helped us promote our new Making Sense of MS resources, and has been on a mission to raise awareness of MS and support others living with the condition since she was diagnosed in 2008.

Trishna is one of six participants chosen for their “tireless and selfless work which has helped change so many lives for the better”.

“I’m excited and nervous,” says Trishna. “I’ll have to undergo weeks of training, but this is a once in a lifetime opportunity and I know how lucky I am. I’m determined to make the best of this chance to raise awareness of MS on prime time TV!” All of us at the MS Trust wish Trishna the very best of luck. The People’s Strictly will air on BBC1 in the week leading up to Red Nose Day, on 13 March 2015.

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The Neurological Alliance is a group of more than 50 national and local neurological charities. The Alliance sent Freedom of Information requests to all Clinical Commissioning Groups (CCGs) in England to find out how aware they are of neurological conditions in their area. The results are presented in a report called The Invisible Patients, which found that: • around 15 per cent of CCGs have assessed local costs relating to the provision of neurology services • only 20 per cent have assessed the number of people using neurological services in their area • around one quarter have assessed the number of people with neurological conditions within their area • only one third obtain feedback from users of the neurological services they commission • nearly 60 per cent of service users have experienced problems in accessing the services or treatment they need.

This echoes the MS Trust’s findings about access to MS specialist nurses, published in November. This found that nearly 30,000 people with MS (about 28 per cent of the UK

Open Door March 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust

MS population), live in areas with less than half the number of nurses needed.

The Invisible Patients sets out a number of recommendations including: • Every CCG should collect up to date and accurate local data, including the prevalence of neurological conditions and of the number of people using neurological services • All CCGs should encourage and collect feedback from users about the quality and development of local neurology services • CCGs should identify clinical and research trial opportunities locally and share this information with people that might be interested in taking part

Read more about our campaign to make sure everyone affected by MS receives the best possible care on p11

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 VITAMIN D

Could synthetic vitamin D be a treatment for MS fatigue?

There are no medications that are specifically approved to treat MS fatigue. This study looked at whether alfacalcidol, a synthetic version of vitamin D, had an effect on MS fatigue Authors Achiron A, et al Title Effect of alfacalcidol on multiple sclerosis-related fatigue: a randomised, double-blind, placebo-controlled study Journal Multiple Sclerosis Journal 2014 Oct 24 [Epub ahead of print]] >> Read the full study: tinyurl.com/vitD-MSfatigue

The study 158 people with MS who had severe levels of fatigue took either a capsule containing 1 microgram of alfacalcidol or a placebo once a day for six months.

Questionnaires were used to assess participants’ levels of fatigue at several points during the course of the trial, and again two months after the trial had ended. They also recorded how many relapses participants had.

The results In the group that had taken alfacalcidol for six months, there was a significant decrease in the severity of fatigue.

During the study, the group taking alfacalcidol also had significantly fewer relapses than the group taking the placebo, although after the trial ended, and the group stopped taking alfacalcidol, the number of relapses increased again.

What does it mean?

The authors conclude that alfacalcidol might be a safe

and effective treatment for MS fatigue. Larger studies, conducted over a longer time period, would be needed to assess its safety in people with MS, as it has a greater effect on the immune system than natural forms of vitamin D. Further studies would also be needed confirm the effect on fatigue and investigate the effect on relapses in more detail.

Extra information about alfacalcidol Alfacalcidol is a prescriptiononly medicine that is used to treat vitamin D deficiency in people with kidney or thyroid problems. As it is a synthetic version, it works in the body in a slightly different way to the other types of vitamin D, so a little bit goes a long way. It has a very potent effect at low doses when compared to the natural types of vitamin D you can buy at the shops. So the results seen in this study are not likely to be seen with similar amounts of natural vitamin D.

Managing fatigue Fatigue is one of the most common symptom of MS and it can have a major impact on your life. The causes of fatigue in MS are not well understood, but it is thought to involve a combination of factors. This means there are also a number of ways that it can be managed and its impact reduced. Most management techniques are about 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.

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

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Research update

Are relapses more likely to happen at certain times of the year?

This study looked at data from people with MS around the world to see if the number of relapses varied by season Authors Spelman T, Gray O, Trojano M, et al.

Title Seasonal variation of relapse rate in multiple sclerosis is latitude-dependent Journal Annals of Neurology 2014;76(6):880-90 >> Read the abstract: tinyurl.com/MS-seasons

The study The MSBase registry is a project that collects information about MS from clinics around the world. From this information the researchers identified 32,762 relapses from 9,811 people with MS in 30 countries which were included in the study. The researchers also obtained data on the daily average UV radiation (an indicator of the amount of sunlight) for each month for each of the locations included in the study. The study used this information to examine the dates that relapses occurred and the latitude (distance away from the equator) at which each person experiencing a relapse was located.

The results For both the northern and southern hemispheres, relapses were most common in the spring and least common in the autumn.

The study also identified a pattern related to latitude. Every 10 degree increase in latitude away from the equator resulted in the peak in the number of relapses in that area moving one month closer to the date of the lowest levels of sunlight.

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What does it mean?

The study showed a relationship between season, amount of sunlight and risk of relapse. But because it was an observational study it could not answer the question of what causes this relationship. The researchers suggest several theories as to what could be causing relapses to be more common in the spring. These include levels of vitamin D. As this is produced in the skin when it is exposed to sunlight, levels tend to be at their highest after the summer, so this may be protecting people from relapse over the autumn, and, as their levels fall through the winter, relapses become more likely in the spring. They also suggest that infections such as colds or flu could be triggering relapses. However, the researchers do note that the number of colds usually peak in the winter, so this does not match the pattern they identified for relapses being more common in the spring. The researchers suggest further studies are needed to test their theories.

Relapses A relapse, attack, flare-up or episode is defined as a sudden onset of symptoms or disability, which lasts at least 24 hours and is not caused by infection. Relapses are caused by the immune system attacking the myelin covering of nerves. This disrupts the messages passing along the nerves and gives rise to the symptoms. Although this current study found that relapses seemed to be more common in the spring, it is not possible to predict when relapses will happen or how often. Every person’s MS is different and so is every relapse.

Some people experience several in a year, but others will go for many years between relapses.

It can sometimes be difficult to tell if you are having a relapse or if you are having a bad patch of symptoms as part of the everyday up-anddown pattern of MS. Our new information sheet, Relapsing remitting MS: an introduction, contains more information on relapses, including To find out more how to tell if you are about relapses visit having a relapse and mstrust.org.uk/relapse what you can do or order the information when you are having sheet on p23 a relapse.

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Research update

Does smoking make MS cognitive symptoms worse?

About half of all people with MS have problems at some time with aspects of thinking such as memory, concentration or problem solving, often referred to as cognition. This study looked at whether smoking could make these problems worse Authors Özcan ME, et al Title Association between smoking and cognitive impairment in multiple sclerosis Journal Neuropsychiatric Disease and Treatment 2014;10:1715-9 >> Read the full paper: tinyurl.com/MS-smoking-cognition

The study 72 people with MS from Turkey took part in the study.

Participants were asked about their smoking habits and they completed several tests to assess their cognition. These tests examined their memory, attention, language function and how well they could process information. The researchers used a calculation called the ‘pack year’ calculation to see how much each participant smoked.

They considered participants were heavy smokers if they had smoked the equivalent of 20 cigarettes a day for 10 years and were still smoking.

The results The study found that there were 24 non-smokers in the group and 20 heavy smokers. The non-smokers were more likely to be women (15 out of 24) and the heavy smokers more likely to be men (13 out of 20), but both groups were all very similar in other ways, such as number of years in education and number of years since MS diagnosis.

When the researchers compared the test scores they found that although some of the non-smokers had cognitive problems, more of the heavy smokers had cognitive difficulties, and their problems with memory and information processing were significantly worse. The heavy smokers had the greatest problems with working memory (short-term storing and manipulating pieces of information) and how well they could process information.

What does it mean?

The study shows that heavy smoking appeared to be related to cognitive difficulties in people with MS. The authors conclude that this study is the first to investigate the effect of smoking on cognition in people with MS, but it fits in with previous research that has shown that smoking can also make other MS symptoms worse.

Managing cognitive symptoms ‘Cognitive difficulties’ is the term used to describe a range of problems with slowed thinking, such as poor memory, attention span or concentration, and difficulty following complicated instructions or problem solving.

Cognitive symptoms are common in MS but may not be recognised. Management of these symptoms involves finding strategies that minimise the difficulty. For example, if you have trouble remembering where you’ve put your car keys, always putting them in the same place will help.

For practical tips and cognition exercises visit stayingsmart.org.uk

For more information about MS and cognition visit mstrust.org.uk/ cognition or order the factsheet on p23

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Research update

Can the HPV vaccination cause MS? The human papillomavirus (HPV) vaccine (Gardasil) protects against cervical cancer. This study looked to see if being vaccinated against HPV could cause someone to develop MS Authors Scheller NM, et al.

Title Quadrivalent HPV vaccination and risk of multiple sclerosis and other demyelinating diseases of the central nervous system.

Journal JAMA: The Journal of the American Medical Association 2015;313(1):54-61. >> Read the abstract: tinyurl.com/MS-HPV

The HPV vaccine (Gardasil) was licensed for use in Europe in 2006 and since then teenage girls in many countries have been vaccinated with it. Since these vaccination programmes started, there have been some reports that some people have developed MS after they had been vaccinated. However, it is not clear whether this was a coincidence and they would have developed MS anyway, or if the MS was as a result of the HPV vaccination.

The study National registers were used to identify all the women aged between 10 and 44 years old in Sweden and Denmark. In total there were nearly four million females identified. The researchers used data from the period 2006 to 2013 in these registers to identify those who had received the HPV vaccination and also those women who been diagnosed with MS. Anyone who already had a diagnosis of MS at the time of vaccination was excluded from the study.

The results

HPV. When they compared the information of vaccinated and unvaccinated women, there was no difference in the number of women diagnosed with MS. The researchers looked at the information in several different ways, including looking at the information by each country individually. No matter how they looked at the data, the result was the same: there was no link between the vaccination and developing MS.

What does it mean?

The study found no evidence of a link between HPV vaccination and a subsequent diagnosis of MS. This was the largest study carried out so far that has looked at this relationship, and it used information from the populations of two countries.

The researchers suggest that, as they have studied a very large number of people from a variety of backgrounds, it is likely that the results can also be applied to women from other countries too. The researchers conclude that their results provide good quality evidence for the safety of the HPV vaccine and that it does not cause MS.

MS and vaccinations The cause of MS remains unknown, but a link between vaccination and the onset of MS has been suggested for many years. However, many studies have failed to find evidence to support these concerns.

It is recommended that people with MS should have all the vaccinations that are required both in the UK and for travelling abroad. For most people with MS it’s preferable to be protected rather than run the risk of contracting the diseases, many of which are serious and life threatening or can have a major impact on their MS. There are certain exceptions and situations where people should not receive vaccinations, for example if you are on certain medications.

Your health professionals will be able to tell you if you should receive a particular vaccination or not.

The study found that of the four million women studied, 789,082 had been vaccinated against

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Open Door March 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust

To read more about MS and vaccinations visit: www.mstrust.org. uk/vaccination

Denise and Lesley (behind the “at the heart” card)) with some of the people they work with in Milton Keynes.

Photo: Noel Read readphotography.co.uk

At the MS Trust, we believe that people living with MS deserve the best possible care THAT’S WHY WE’RE launching a new campaign to make sure everyone affected by MS can get access to MS specialists (that is, specialist nurses, as well as physiotherapists, occupational therapists and other health professionals with expertise in MS).

There are currently about 100,000 people living with MS in the UK, and around 100 are diagnosed every week. But we still don’t have enough MS specialists. The specialists we do have often have to manage unsustainable caseloads. Over the page Amy Bowen, Director of Service Development at the MS Trust, explains exactly what the problem is and how we’re working with MS specialists to highlight the difference they make. On p15 you can find out how you can get involved this MS Awareness Week and make a real difference.

But to launch our campaign, and to get a vivid insight into how people with MS benefit if they have specialists at the heart of their care, we went to Bletchley, Milton Keynes to meet Denise Middleton and Lesley Catterall, and some of the people affected by MS they work with.

Denise and Lesley were the winners of our 2014 MS Super Team award. The MS community of Milton Keynes – people with MS, their friends, families and carers – nominated them and told us of the difference they make every day, from providing information and support, helping people access treatments and therapies and make practical changes that can make everyday life a little easier.

Lesley is an MS specialist nurse, while Denise is an MS specialist with a background in occupational

therapy. Their complementary skills mean that people with MS in Milton Keynes receive care tailored to their specific needs, with Lesley focusing on helping people with relapsing remitting MS and Denise helping people with progressive forms of MS. “We were so proud to be named MS Super Team in 2014,” says Denise. “We both love supporting patients with MS and feel very lucky to have such rewarding and fulfilling job.”

“Denise has been so helpful,” says Kathy, who has lived with MS for over 20 years. “She was there when I was diagnosed and has been with me through the years. She comes to see me in my house, which makes it very personal. My husband also needed some support, so we are both really grateful.”

“I know that some people don’t have access to an MS nurse where they live,” says Wendy. “That makes me appreciate Denise all the more. She’s always on hand with up-to-date information that helps me manage my symptoms more effectively. I really don’t know what we’d do without them. The support they provide is invaluable. Everyone with MS should have access to someone like Denise or Lesley, no matter where they live!”

Read on to find out more about our campaign and how you can help make sure everyone affected by MS can access this vital specialist care.

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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T he h ear t of M S c a re

Why are we campaigning for specialist MS care?

There are over 100,000 people living with MS in the UK today. But MS Trust research shows that there is a shortage of MS specialist nurses and an urgent need to raise the profile of the physiotherapists and occupational therapists with special expertise in MS. Amy Bowen, Director of Service Development at the MS Trust, explains why we’re working to put MS specialists at the heart of MS care and why we need your support PEOPLE WITH MS are most often diagnosed in their 20s and 30s. In fact, MS is now the most common neurological condition affecting young adults. So MS really is a lifelong condition. If you have MS you may have to make some big adjustments, manage a range of symptoms, make difficult decisions about treatments and face an unpredictable future.

Despite the number of people who are living with MS, understanding of the condition among health professionals is still often limited. Many health professionals will not have had much experience of MS and don’t have the up-todate knowledge of the latest developments in MS care.

There are new treatments for MS and its symptoms and our understanding of the condition is constantly increasing. This is why MS specialists – neurologists, nurses, and physiotherapists and occupational therapists with special expertise in MS – are vital. They have knowledge and experience to provide the expert, personal support people with MS need, across the range of symptoms, throughout their life with MS.

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What’s in a name?

It takes training, knowledge and experience to become a specialist. Not all specialists will have the word in their job title, but the MS Trust works closely with the key professional groups like the UK MS Specialist Nurse Association and the Therapists in MS group to help define what it means to be a specialist. For more than 10 years, we have been providing training programmes for every UK MS specialist nurse as well as for physiotherapists and occupational therapists. This has helped to develop an MS specialist workforce and to help to let us know where are gaps in availability of these specialist roles. National experts work with us to deliver the training programmes in order to make sure that the best possible care is available as widely as possible.

Along with training, the amount of time health professionals spend working with people with MS is also critical. There is no substitute for building up experience in the many symptoms of MS and the treatments, both the drugs and the therapies. Part of what defines a specialist is that bank of experience that they can draw on to provide the right information, advice and care for each person’s unique circumstances.

MS specialist care needs protecting However, not everyone with MS in the UK has access Along with to the MS specialist care training, the they need. amount of time health MS Trust research professionals spend has identified a shortage working with people of MS nurses and many with MS is also of them have caseloads critical. that are more than twice the number that is practical or sustainable. Physiotherapists and occupational therapists with special expertise in MS are in limited supply and our research has shown that there is an urgent need to highlight the importance of their value. Managers and commissioners in a cash-strapped NHS need to know that the knowledge and experience of MS specialists can have a huge impact on the lives of people with MS and to ensure that there are enough of these specialist health professionals to meet the needs of their local community.

For people with MS, access to MS specialists means having support to feel in control of the many symptoms of MS. It means being prepared for potential problems or changes and knowing how to prevent crises. It means being able to receive the expert support to recover from set-backs and to adapt to new circumstances. MS specialists have the knowledge and experience to help with

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staying in work, staying active and making choices about care and treatment that suit each person’s unique circumstances.

Without specialist care, people with MS are missing out By working to improve access to MS specialists, we can help to ensure that everyone with MS gets more of the care they need.

Having enough MS specialists also help raise awareness and improve understanding of MS amongst health professionals who have less experience of MS. MS specialists don’t work in isolation. As well as being part of specialist teams which include neurologists based in hospitals, they link up with GPs, district nurses and other local services and share their knowledge and expertise to help coordinate and improve the whole experience of MS care. This all helps to avoid emergencies and reduce the need for already over-stretched A&E departments.

We need MS specialists at the heart of MS care The MS Trust is committed to making sure that everyone

affected by MS can get the best possible care. But we need your help to continue our work.

Showing the difference MS specialists make for people with MS Through our innovative national GEMSS programme, we’re working with MS specialists and developing new tools to help them show managers and commissioners how they offer the best, most effective care for people living with MS. As part of GEMSS, we are running a national survey service and are gathering the views of thousands of people with MS about how specialist care makes a difference to them. By supporting our campaign, you’re helping us to make the case for specialist MS care.

Training and supporting MS specialists to provide the best possible care We train every new MS specialist nurse in the UK, making sure they can deliver the best possible care for everyone affected by MS and we offer a full range of training and support for physiotherapists and

occupational therapists to gain expertise in MS. We also provide additional training as well as support and resources to make make sure all MS specialists stay up to date with the latest developments. By supporting our campaign, you can make sure we can continue this work.

Changing national guidance We are disappointed that the new national Guideline for MS doesn’t go far enough in highlighting the importance of MS specialists. We want NICE, the national body that provides guidance to improve health and social care, to recognise the importance of MS specialist nurses as well as physiotherapists and occupational therapists with special expertise in MS. We want to raise the profile of these roles, help build the evidence for their value and to get NICE to acknowledge the difference that their services make. By signing up to our campaign, you’re adding your voice to this call.

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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T he h ear t of M S c a re

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reasons why we need MS specialists at the heart of MS care

The difference an MS specialist made for me

MS specialists understand how MS affects everyone differently On average, a GP in England is likely to see around three people with MS. On average an MS specialist nurse cares for over 300 people with MS, while physiotherapists and occupational therapists with special expertise have vast clinical experience and knowledge of MS. This means they understand the different types of MS and the different ways it can affect people, and this means they know how to to provide the best possible care.

MS specialists understand the physical and psychological symptoms of MS Because MS nurses and therapists receive specialist training from the MS Trust, they are specialists on the various symptoms of MS, from difficulties you might have with thinking to issues that might affect your walking. And they can tell you which symptoms are MS-related and which are not.

MS specialists have strong links with local neurology departments MS specialists are in regular contact with neurology departments, and can be the best people to help you if you need urgent attention from your neurologist.

MS specialists are aware of all the latest treatments and therapies The world of MS care is changing and over the last few years several new drugs and treatments have become available.

Because they receive training and regular updates from the MS Trust, MS specialists are the best people to help you understand what treatments might work for you and how you might access them.

MS specialists see the whole person rather than just the symptoms Because they have such wide experience, MS specialists know how MS might affect every aspect of your life: your home life, your work and your education. And they know when to ask about symptoms that you may not even consider part of your MS.

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Leonie lived with MS for two years before finding an MS specialist nurse I WAS DIAGNOSED with relapsing MS in 2000. I asked my neurologist “What does this mean?” He said “It’s impossible to say. Just get on with your life and don’t worry about it.” I wasn’t given any information or support. I learned the hard way. Over a period of two years, I was having three relapses a year and gradually sinking deeper into depression.

My employer and colleagues didn’t understand, I didn’t understand. It was just a car crash. I had been signed off work and I was in a It was just like really bad place. It was only through my own somebody opening initiative that I came a window and fresh air across the name of an coming in. This person MS nurse and made understands what I’m contact. It was just saying! like somebody opening a window and fresh air coming in. This person understands what I’m saying! That reassurance. She didn’t have a magic wand or anything, but just having somebody who understands, so you’re not on your own. And finding out that other people with MS also have these symptoms. You realise you’re not cracking up.

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T h e h eart o f MS c a re

How you can help We believe that everyone living with MS in the UK should have access to an MS specialist. But we need your help to make change happen. This year’s MS Awareness Week runs from 27 April–3 May and there are a number of ways you can get involved and make a difference.

Sign up The simplest way to show your support is to visit mstrust.org.uk/heart and add your name to our campaign – and encourage others to do so too. The more people who support our call to action, the stronger case we can make for the need for MS specialists for everyone living with MS in the UK.

Share your story If you have an MS specialist who’s made a difference for you, share your story and highlight the importance of good specialist MS care. And, because a picture paints a thousand words, if you have a great MS specialist you want to thank, why not take an MS selfie of the two of you and share it in our social media communities? Find out more at mstrust.org.uk/heart We’re also keen to hear from you if you don’t have access, or have lost access, to an MS specialist. What difference has it made to you? Sharing your experience could help us make sure everyone affected by MS receives the care they need.

Email heart@mstrust.org.uk with your story.

Spread the word You could spread the word and help us reach even more people with our campaign.

Visit mstrust.org.uk/heart or email heart@mstrust.org.uk to find lots of good ideas for spreading the word about the importance of expert MS care in your local media and online.

Raise funds and raise awareness Taking part in MS Trust events is a great way to raise the profile of MS specialists and raise funds to support our work. Our Bold in Blue campaign runs throughout the year and our team have lots of great ideas to help you raise funds in your community. Alternatively if you’re feeling brave, why not join in with our Big Blue Jump, which takes place at the end of MS Awareness Week in Reading on 2 May? Find out more about all our fundraising events at mstrust.org.uk/getinvolved

Make a donation The MS Trust trains, develops and supports specialist nurses and therapists across the UK, but we can only continue with this work with your support. You can also support our innovate projects such as GEMSS, which is helping MS teams around the country generate the evidence that shows the impact of their work. Find out more at mstrust.org.uk/donate

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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N E W T RE AT M E NTS

Stem cells and MS: where are we now?

We’ve all heard stories about miracle cures for MS; these days they often involve stem cells. Neil Scolding is the Burden Professor and Director of the Bristol Institute of Clinical Neurosciences, and he has a special interest in MS and cell therapy. He’s also a trustee of the MS Trust and is leading research we’ve helped fund into bone marrow cell therapy. We asked him to explain the significance of the latest research and help sort the hope from the hype EVERY NOW AND then we still hear or read stories of miracle cures from stem cells – a man reported to have walked again when his severe spinal cord injury was treated with stem cells from his nose.

Or dogs cured of their spinal disease with stem cell therapies.

We all know that newspapers need to sell copies, and that “scientists quietly optimistic of a small, incremental advance” makes a boring headline. So all of us try, when we see these things, to be at least a little cautious. But the plain fact is that, mostly, each of these stories does represent progress, a further step forward, sometimes small, sometimes large. They are good news.

So where do all these steps lead? What progress has there been, and how close are stem cell therapies to being routinely available and used in the clinic?

The short answer is: it’s complicated! And it’s complicated because MS is so complicated.

Three types of cell therapy What has changed in recent years is that stem cell therapy in MS is now thought of in three quite different ways: • as a cell replacement strategy, to restore damaged oligodendrocytes – the cells that make myelin – in the brain and spinal cord • as a way of replacing the body’s immune system, in order to prevent future inflammation in the brain and spinal cord • as a repair and protection strategy, using complex additional properties of some stem cells, both to limit nervous tissue damage and to promote its regeneration These three approaches have different aims, and can use different types of stem cells. Partly because of this, many of us now prefer the term cell therapy to stem cell therapy. The strategies are at different stages of development, some nearer, some further from the clinic. But they are all important.

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Turning research into treatment The UK has a strong claim to be leading the world in all three of these approaches. But how and when do we turn research into treatments? Again, this differs for the three approaches.

Cell replacement strategies were probably the first to be thought of, but have faced the most difficult challenges in clinical development. There are challenges in: • dentifying safe sources of cells and placing them safely in the areas where they’re most needed – inside the brain and the spinal cord • and, in particular, being certain they carry no hazards, such as tumour formation They therefore remain furthest from routine clinical use: there have not yet been any published clinical trials of this approach.

By contrast, bone marrow stem cell transplants to replace the body’s immune system are at an advanced stage. Taking advantage of the technical and clinical progress made by haematologist colleagues, clinicians in Europe, the US and the UK have completed large scale clinical trials in several hundreds of people with MS. While still

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New treatme nts

hardly a routine treatment, we have an increasing understanding of the potential benefits – and the clinical risks – of this approach.

The third way of MS cell therapy, harnessing the protective and regenerative properties of stem cells, lies somewhere between these two in its development, with some small scale trials completed, and larger ones just getting underway.

Hope for people with progressive MS? Our work in Bristol has largely concentrated on this third way. Some researchers use cells present in fatty tissue, others from other tissue, but we use cells from the bone marrow. Bone marrow stem cells are complex. We tend to concentrate mostly not on those bone marrow cells that generate the blood and immune systems, but on other, smaller populations of cells. We conduct laboratory research studying their properties, and clinical work. A few years ago we conducted one of the first trials in the world of this approach – a very small phase 1 trial to confirm their safety and the feasibility of this strategy.

Thanks to funding from the MS Trust, we are now conducting one of the first phase 2 trials using this approach, the ACTiMuS trial. Over the next few years we hope to begin to provide answers as to whether this will genuinely make a difference to people with MS.

Hope vs hype While these treatments remain in their relatively early stages of clinical trial and development, it can be very tempting to imagine that the proof is already there (it isn’t), and that commercial outfits, advertising and selling ‘therapies’, usually in countries with a less robust regulatory system, are the answer (they aren’t).

Most forms of stem cell therapy in MS remain unproven: the hazards are not fully understood and some unscrupulous people are making a profit out of the hopes of people with MS. Nevertheless cell therapy is one of the more promising areas of MS research and there is great work being done in this area in the UK. Whether you are interested in cell therapy or any other potential treatment for MS it’s important to make sure you consult reliable, evidence-based, information. See the box on the right for details about how you can make sure you consult MS information you can trust.

How can I tell good research from hype?

Although health stories always attract a great deal of media interest, not all of these reports are accurate accounts of what the studies have found. Some other reports may also sound convincing but they may just be opinion, or someone’s personal experience, presented as if they were facts that would apply to everyone.

The most important thing is to consult reliable, evidence-based information, for example, on the MS Trust website. If there has been a breakthough in a particular area of research, we will be reporting on it. If we haven’t reported on it, or have a different take on the research, then consider what is being said very carefully.

You can undertake your own analysis of a media story by asking yourself these questions: • Does the article content contain evidence and data that match the claim in the headline?

• How many people did the research study include? Did it include a control group for comparisons too?

• Was the research in humans? This will give you a clue as to how advanced the research is. If the study was in petri dishes or animals, this means the treatments are much further away from being available in the clinic and may not even work in humans.

• Is it published in a scientific journal? Or is the article based on a presentation or an interview? Work published in journals goes through a rigorous review process from other experts in the area, in a presentation or interview the person can say whatever they like.

• Who is conducting the study? Is it research to help develop a treatment or does the study If you would like to appear to be marketing? You find out more about should be very wary of any research in MS, visit research or trial in which www.mstrust.org.uk/ participants are expected to pay for their own treatment. research If you would like to know more about anything related to MS, contact the MS Trust information team and we can help you find out more. Call us on 0800 03203839 or email infoteam@mstrust.org.uk

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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W H AT I S ?

What is the MS hug?

The MS hug sounds quite benign but can be a shock if it happens to you. Jane from the MS Trust information team looks at what it is and how you can manage it IT SOUNDS LIKE it might be friendly or cuddly, comforting and gentle. In practice, it may feel anything but. It is also known as banding or girdling and is a tight feeling, usually around the chest but sometimes around the waist, hand, foot or head. Sometimes, it can squeeze really hard and not let go in a hurry. It may feel so tight around the chest that it can feel like it’s difficult to breathe.

The MS hug is quite a common symptom of MS but is not well known, and so often takes people by surprise when it happens to them for the first time.

What causes the MS hug?

The cause of the MS hug isn’t fully understood.

There may be a couple of different things going on here depending on what you are experiencing.

The feeling of tightness around the chest can be due to spasms in the intercostal muscles between the ribs. Some people also get feelings of aching, stabbing, crawling or pins and needles. These unusual sensations for which there isn’t a physical cause are called dysaesthesia and are classed, medically, as a kind of pain. As with most things in MS, it’s all due to nerve damage – particularly, in this case, changes to sensory nerves.

Any chest pain has to be taken seriously just in case it has a cause that needs immediate medical attention like heart problems.

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“This feeling usually relates to an episode of inflammation within the spinal cord, although not necessarily right at the level where the person experiences the symptoms. People describe it as someone sitting on their chest or squeezing around their trunks, and bra straps can become unbearably uncomfortable. If the symptom is new and associated with other motor or sensory symptoms the person should get in touch with their MS team, as it may indicate a relapse which might be helped with steroid treatment if caught early. It is important to think about other potential serious causes, such as cardiac or respiratory problems, as these could give similar symptoms.”

Dr Belinda Weller, neurologist

How to manage the hug?

So what should you do if you get a band of tightness around your chest? First, think whether is it definitely due to your MS? Any chest pain has to be taken seriously, just in case it has a cause that needs immediate medical attention like heart problems. Get checked out as soon as possible.

Secondly, relax and breathe. This is easy to say but sometimes hard to do if you are being squeezed round the chest. However, it’s worth trying, as being tensed up won’t help. Also, the symptoms usually pass without treatment, so try and sit it out as comfortably as possible.

Some people find that a warm bath or heat pad helps. Drug treatments are available if the hug is really persistent, including those often used for other forms of dysaesthesia or neuropathic pain Some people say that the best way to deal with the MS hug is to distract the brain from thinking about it. Although you can’t get rid of the tight feeling, giving the brain a good reason for the

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W h at i s th e M S hug? feeling can stop it focussing on the odd sensation and worrying about it. So, if it’s your head that has the MS hug, wear a hat. If it’s your chest, you could wear a close fitting top. Gloves, socks or boots may help with tight feelings in the hands or feet. Equally, some people say that wearing really loose clothing is better, so finding the best way to manage is a process of individual trial and error.

What is the MS hug like?

“It’s like an elephant has sat on my chest.”

Emma “It’s like my bra is five times too small.”

Lorraine “Lots of people don’t know what it is, even those who have been diagnosed for some time. Some find it very frightening.”

Nicki, MS nurse “The first time I thought I was having a heart attack, really takes the breath from you.”

Lorna

What helps with the MS hug?

“I found tight pressure was, weirdly, the best way to relieve it. I wrap a scarf tightly around where I feel the band of tightness.”

Claire “Hot water helps me: boil it and drink plain once it’s not too hot.”

Subodha “Some people say it is worse when they are fatigued, like many other symptoms.”

Nicki, MS nurse “Sometimes changing position helps. Move around and see if it improves.”

Sarah and Jennie, MS nurses “Tell your neurologist or MS nurse so they can discuss a management plan if it were to happen again.”

Lou, MS nurse “Some people find wearing loose clothing helps, also distraction techniques. One patient finds using a TENS machine beneficial.”

Lesley, MS nurse “Breathing exercises, yoga, distraction, a hot water bottle and a mild analgesia all can help.

Also try to remember that it won’t last too long.” Janice, MS nurse “I always try to avoid medication where possible so I suggest tricks such as distraction, keeping mobile where possible, hot or cold packs, massage or loose clothes.”

Belinda, neurologist

What are relaxation and distraction techniques and how can you use them?

Many people find distraction and relaxation techniques useful to manage their pain. Relaxation can decrease stress and muscle To find out more tension which might exacerbate the pain. This might involve and see videos tensing and relaxing your muscle groups in turn, or using slow, of what’s worked rhythmic breathing exercises. for others, visit the Distraction means turning your attention to something other healthtalk.org website: than the pain. Distractions can be internal, such as counting, tinyurl.com/ singing to yourself or praying, or they can be external, such as distract-relax reading, needlework, model building, or painting. Listening to music can also be a good distraction method.

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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G E T IN V O LV ED

Why we’re rowing the Atlantic for Uncle Gary and the MS Trust David Middleton and his friends Charlie, Joe and Matt (right) are the Atlantic Lions. Together they have entered the 2015 Talisker Whisky Atlantic Challenge, which will see them row across the Atlantic Ocean. By doing so, the Lions hope to raise £100,000 to support the work of the MS Trust. David explains why they’ve set themselves this huge challenge Next December, me and three friends are competing in a 3,000 mile rowing race across the Atlantic Ocean, starting in the Canary Islands and finishing in the Caribbean. More people have been into space or climbed Everest than have completed this challenge. It is one of the ultimate tests of human determination, as rowers endure months of sleep deprivation, extreme physical pain and face huge mental barriers.

Inspiration Our inspiration for taking on the Atlantic with just our arms and oars comes from my Uncle Gary. He was a man who lived his dream by spending his days climbing the Scottish Highlands. Gary moved up to Ballachulish when he was 25. He worked as an engineer at the Glencoe ski centre and also volunteered for the Glencoe mountain rescue team.

Gary’s life was anything but perfect in terms of financial stability, but he was a rich man when it came to the happiness he got from the mountains of Scotland.

One day while on a rescue mission on a Munro near the Aonach Eagach ridge, Gary started feeling dizzy but he carried on and completed his mission.

However, this dizzy feeling and lack of balance

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progressively got worse and so he finally went to the doctor. He was diagnosed with multiple sclerosis and his outdoor life in the Scottish Highlands came to a shocking halt. For someone as active and free-spirited as Gary this was truly heart breaking.

As Gary’s health continued to deteriorate he moved south to be closer to his mother and father.

Sadly, over time, the illness got progressively worse and in 2008 he was told that there was not much time left. At this point Gary and his devoted wife decided to move back to the mountains, back to the place he cherished more than anything in the world.

Achieving something incredible Gary died in May 2009 and is buried by Loch Leven next to Glencoe. He was a man who lived his life one day at a time, only working enough to survive and to have enough money to enjoy the Highlands. In my eyes he is a hero because, in this day and age, people forget to follow their dreams, to take a moment and think and to enjoy life. My dream is to row across the Atlantic Ocean next year, and, in doing so, my team and I want to inspire more people to live their dreams, just as Gary did.

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Get i nvolve d

Get involved!

My dream is to row across the Atlantic Ocean next year and in doing so my team and I want to inspire more people to live their dreams, just as Gary did.

Suppo everyo rt ne living with M S

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

Big Blue Jump for MS Awareness Do something amazing this MS Awareness Week! Join the Big Blue Jump on Saturday 2 May at Chiltern Park Aerodrome in Oxfordshire and skydive for the MS Trust. mstrust.org.uk/bigbluejump

MS Circuit Challenge at Goodwood The Atlantic Lions is more than just a team of four friends competing in a rowing challenge. We want to reach out to communities, families, friends and businesses, to take them on our journey, to achieve something incredible and to give as much as possible to the MS Trust, a charity so crucial to so many people.

In order for the Lions to complete their challenge, they first have to reach the start line of the race, which is a challenge in itself.

Charity fundraising aside, they need to raise around £90,000 in sponsorship to help cover their equipment and entry fees. They are looking for individuals and businesses to partner with and they have lots of fantastic sponsorship opportunities available.

For £1,000 you could even sponsor an oar, which you get to keep after the race!

Please get in touch if you think you may have any contacts that would like to get involved with our Atlantic Lions team.

Find out more at atlanticlions.com or follow them on twitter @atlantic_lions

Join us for a fun-filled family day out at the legendary Goodwood Motor Circuit on Sunday 17 May, kicking off with a sponsored 50-mile cycle challenge, followed by a family fun event going round the track by any method you fancy in the afternoon. mstrust.org.uk/goodwood

Two opportunities to zipslide This year there will be two zip slide events over the River Tyne, the first on 6 June from the Tyne Bridge and the second from the BALTIC Centre on 19 September. mstrust.org.uk/zipslide

British 10K London Run There’s always a great atmosphere and the route takes you past some of London’s most iconic sights.

Discounts for group entry. Join our team on 12 July and support people with MS. mstrust.org.uk/british10k

Vietnam to Cambodia cycle ride Pedal your way across two magical countries from 29 October to 8 November 2015, culminating in a visit to the magical temple of Angkor Wat in Cambodia. mstrust.org.uk/vietnam

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

Open Door March 2015 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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15 Emma Rogan MS campaigner

minutes with

Emma Rogan was diagnosed with MS in 2007 and since then has worked tirelessly to raise awareness of the issues that affect people with MS. In 2012 she entered the Vodafone World of Difference competition and worked with MS Ireland on advocacy, policy and information. She now works for the European MS Platform, and is leading their Believe and Achieve campaign, creating paid internship opportunities for young people with MS through partnerships with businesses across Europe What was the biggest thing you learned from winning the World of Difference competition?

It is hard to do justice to such a life-changing experience! I had the chance to work for the charity of my choice for one year, with salary, training and media opportunities.

The value of routine and being back at work were things I hadn’t realised were so important to me.

That year positively altered my life path. Winning World of Difference was a chance to make more of who I was, to re-awaken my self-belief, re-establish my career and be the best of myself. In turn, I want to show people that life does go on after diagnosis with a chronic illness.

What do you hope to achieve with Believe and Achieve?

We want to break the notion that, once diagnosed, people with MS don’t or can’t work. I want us to revolutionise the work environment so people with MS, and with other conditions, can continue to work or start in jobs where they stay on their career path, fulfill their ambitions and meet their financial needs.

What needs to change?

We need a unified approach from all government departments and organisations because it’s about helping people flourish in their workplaces and communities. We need local employment advisors who understand the fluctuating

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nature of MS symptoms and we need more information for businesses so they hold onto valuable employees. In the workplace, we need options to negotiate flexible hours and accessible workplaces. We also need quality work that matches people’s skills. MS doesn’t take away a person’s ability but there may be changes that have to happen to live a full, successful life. It is this ability that the Believe and Achieve programme wants to nurture.

What can people with MS do?

The MS Trust and other organisations provide useful, practical information about work and MS. We have to use it. Ask for support and, if you’re working, speak with your employer or social worker and make a point of preparing for change. The latest research suggests that people who disclose their diagnosis to their employers are more likely to stay in work. So if you want to remain in work and you have the capacity, give your employers the information they need. If you’re looking for work, you may need some help with your confidence to focus on the skills and experience that will get you hired. For employers, there are ways for you to ensure people are supported to stay in work. MS may be part of your existence but it is your ability to work that employers are interested in.

You blogged at the start of last year about writing a list of what you wanted to achieve in 2014 – how successful were you?

My writing output has been low so that will go back on my list!

I’ve been using mindfulness meditation daily and making use of some brilliant apps such as Take Ten and Digipill for when I take my daily rest, Black Rainbow and chatting with folks on Twitter for motivation. For me, the point of any New Year’s resolution is to hope for what might be, peace of mind and celebrating life as it is.

What’s your top tip for sticking to those plans and resolutions?

Live in the present but do go back and check your list. Discipline and focus are vital, but for anything to work you have to enjoy yourself.

I’ll be celebrating the wonder of life when I welcome a new family member in May; my partner Cathy is pregnant and we’re expecting our first child. Life is so much more than I ever hoped it would be. Dare to dream but allow yourself to let things go. You To find out more are in control of your about Believe and thoughts so talk kindly to yourself. Join me Achieve and to see the on Twitter for a latest vacancies chat sometime. visit emsp.org/projects/ I’m @emmadragon

Open Door March 2015 Facebook: facebook.com/mstrustuk Twitter: @mstrust

believe-and-achieve To find out more about your work options if you have MS visit mstrust.org.uk/ work

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 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

Disease modifying drug therapy MS-90

Sex & MS: men MS-356

Primary progressive MS

Secondary progressive MS

Managing your bladder

Falls MS-429

Living with fatigue MS-204

Clinically isolated syndrome (CIS) (revised)

Vitamin D (revised) MS-314

Pregnancy & parenthood

Pain MS-96

Depression MS-315

Cognition MS-144

Diet MS-92

Stem cells MS-132

Books MS-286

MS-352

MS-458

MS-429

Factsheets MS-134

MS-321

DVD

Move it for MS – a DVD of exercises for people with MS MS-245

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Struggling to stick with that new year resolution?

Let Mr Motivator guide you through a specially designed exercise routine (including full warm down session) in the comfort of your own home!

Order our FREE Move It For MS DVD on the order form overleaf, or visit mstrust.org.uk/exercise