August 2015 Open Door

Quarterly newsletter of the MS Trust

Open Door August 2015

Mor e eff ectiv e?

Lo we r ri sk ?

A new era in MS care?

How will the new neurologist guidelines affect treatment options for people with relapsing MS?

Also in this issue Can looking after your heart help you live well with MS?

Ataxia: what is it and how can you manage it?

Managing MS foot drop with electrical stimulation

15 minutes with MS Trust volunteer Liz Thompson

Even the

small things add up to make a difference

To fundraise your way visit mstrust.org.uk/ideas email fundraising@mstrust.org.uk or call 01462 476707

Welcome to the August issue of Open Door I must begin by saying a huge thank you to all of you who contributed to our spring appeal in support of the MS Trust health professional education programme. Your generosity will help us ensure that MS specialists continue to receive the training that helps them make a difference for people with MS. Our work in support of MS specialist services is going to be boosted this autumn with the publication of the final report from our innovative GEMSS project, helping MS specialists demonstrate the difference they make for people living with MS. On p6 you can read Geraldine Mynor’s report on what we’ve found so far, as we begin to analyse the data that’s been collected.

Our work supporting MS specialist services gains a new focus with the publication this summer of drug guidelines from the Association of British Neurologists (ABN). The guidelines recommend that people with relapsing MS should begin treatment with a disease modifying drug as soon as possible after diagnosis, and that the effectiveness of their treatment should be monitored in the clinic and with MRI scans. You can read our report on this approach, and how it might affect people with relapsing MS beginning on p11.

The MS Trust welcomes the ABN guidelines, but we know they are going to have huge implications for MS services.

How can we make sure that people with MS get full guidance on their treatment choices? And how can make sure that they can rely on regular check ups and support over their treatment course? This is the basis of our new project, MS Forward View, which we introduce on p5.

Speaking of forward planning, I must make my annual apology for introducing our Christmas card brochure in August! Christmas card sales still play a huge part in funding our work and I hope you will find something you like in our 2015 selection. And if you feel like going the extra mile as a seasonal supporter, you can find out about our Christmas volunteering opportunities on p22.

Contents 4

New MS drug guidelines from the Association of British Neurologists, results from the ocrelizumab clinical trials, and a development award for the MS Neuroresponse scheme, plus the latest news on our GEMSS and MS Forward View programmes and the new and improved MS Decisions resource

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roM ffe e itce ?ev oL rew sir ?k

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A new era in MS care?

The new guidelines from the Association of British Neurologists recommend a proactive approach to MS treatment: we speak to neurologists and people living with MS on what this means for MS care

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Dealing with ataxia and tremor Physiotherapist Wendy Hendrie introduces practical tips for coping with these common MS symptoms

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A spring in your step Researchers, practitioners and users explain how functional electrical stimulation can be an effective way of overcoming MS walking difficulties

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Get involved Vicky Edwards explains why she’s supporting the MS Trust in her will 21 Are you ready for this year’s Reindeer Rally?

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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 on functional electrical stimulation, heart health and computer balance games

Best wishes

Pam Macfarlane Chief Executive, MS Trust

News

15 minutes with Liz Thompson One of the MS Trust’s most dedicated supporters explains why she volunteers in one of our Christmas card shops

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 August 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

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

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

M S D I S E A S E M OD IF Y IN G D RU GS

Neurologists recommend earlier treatment for people with MS People with relapsing remitting MS should be considering starting disease modifying treatment as early as possible and be active partners in treatment choices, according to revised guidelines published in June by the Association of British Neurologists (ABN) The guidelines set out best practice in prescribing and monitoring disease modifying drugs (DMDs). They take account of new drugs and advances in diagnosing MS that have occurred since the previous revision in 2009.

The ABN recognises that the disease modifying treatments – of which eleven are now licensed in the UK – have a significant impact on relapsing MS. People with MS can have relapses and worsening symptoms, but the disease can also be silently active which can only be observed by scanning the brain. MRI scanning allows neurologists to understand underlying disease activity in MS and make changes to treatment plans.

Vital role of specialist nurses The guidelines recommend that MS teams, including MS neurologists and specialist nurses, should help people understand their options, including the potential impact of leaving the disease untreated, and to make the choice that is right for them. The MS team

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should continue to monitor people on disease modifying treatments and consider the possibility of switching to another drug should the person’s MS continue to be active. The guideline emphasises the importance of shared decision making and the “vital role of MS specialist nurses”.

Building the capacity of MS services “The revised guidelines from the ABN herald a new era in MS care,” said Amy Bowen, Director of Service Development at the MS Trust. “Treatment choices are increasingly complex and expert guidance is vital to ensure people with MS can make the choices that are right for them.

The MS Trust was glad to have the opportunity to comment on the guidelines.

“There is a much greater emphasis in the guidelines on starting drug treatment earlier and on monitoring for the effectiveness of treatment, including more use of MRI scans. As the focus on earlier treatment and monitoring of

disease activity increases, it is equally important that MS teams are supported to develop their services accordingly.

“The ABN It is also guidelines herald a essential new era in MS care” that this is – Amy Bowen, done in a way MS Trust that ensures everyone affected

by MS continues to receive high quality care.

Research by the MS Trust has shown that there is a shortfall of MS nurses and we are aware that there are too few neurologists who specialise in MS. It will require coordinated effort by many in the MS community to ensure there is the capacity in MS services to meet the need now and in the future.”

See the next page for more about MS Forward View, our new project which aims to help MS specialist services meet the challenge of the ABN’s guidelines.

Open Door August 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

Why we’re launching a new project to ensure more people can access the best possible MS care MS Forward View aims to define the development and improvement of MS specialist care The MS Trust welcomes the new guidelines from the Association of British Neurologist for prescribing and monitoring MS DMDs. However, we know that they pose a big challenge for existing MS specialist services.

There are over 100,000 people in the UK living with MS. However, we have comparatively low numbers of people with relapsing remitting MS (RRMS) currently taking DMDs. MS Trust research also shows that we have a shortfall of MS specialist neurologists and nurses.

The challenge for MS specialist services is to support the call for earlier and higher levels of treatment for people with RRMS, while ensuring everyone with MS can access specialist care.

That’s why we’re launching MS Forward View. This is a new, one-year project, building on our GEMSS programme, looking at how MS services can make best use of their skills and resources to ensure more people can access the best possible specialist care.

Through MS Forward View we will work with people with MS, health professionals and managers to produce an

action plan to improve and measure access to specialist care, and define future standards and education programmes.

During the project we plan to map neurologists and MS specialist nurses in the UK, define the different types of services they offer, look at how they currently prescribe and monitor DMDs and explore ways they could work to help more people with MS, no matter what type they have, access the best possible care.

We’re currently working with project partners on our detailed plans and we will begin mapping existing services this autumn. To find out more about the project and how you could support this work visit mstrust.org.uk/ forwardview

For more on the idea of proactive MS treatment, see the feature which begins on p11 of this issue

Ocrelizumab clinical trial results announced Ocrelizumab was better than beta interferon at reducing the number of relapses, slowing the rate of disability progression and reducing the number of lesions seen on MRI scans according to trial results announced by the pharmaceutical company Roche.

The Opera I and Opera II phase III trials recruited 1,656 people with relapsing remitting MS or secondary progressive MS with relapses. Participants had either an infusion of ocrelizumab every six months or injected interferon beta 1a (Rebif) three times per week for nearly two years (96 weeks).

Results from a separate phase III study of ocrelizumab in people with primary progressive MS are expected later this year.

MS support service wins development award A nurse-led telephone triage/ advice service for people with multiple sclerosis in London has been awarded a place on an NHS England programme to make innovative ideas more widely available.

NeuroResponse was developed

by Bernadette Porter, MS Nurse Consultant at the National Hospital for Neurology & Neurosurgery.

The service includes a telephone support line staffed by MS specialist nurses, email advice for GPs and video links to community teams around London.

NeuroResponse was one of 17 projects awarded a place on the NHS Innovation Accelerator programme. This scheme provides funding and expert support to develop projects and make them more widely available across England.

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

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News M S SE R V I C E S

Putting MS specialists at the heart of MS care Geraldine Mynors reports on progress in our campaign to make sure everyone affected by MS can access the best possible specialist case For the past year 11 teams of MS specialist nurses and therapists have taken part in the MS Trust’s GEMSS (Generating Evidence in MS Services) programme. They have been collecting data about the service they offer people with MS, so that we can make the best possible case for the value of their work. Our task now is to bring the data together into evidence which we hope will influence the shape of NHS services to come.

Unique insights Between them the teams have a caseload of about 13,000 people with MS – that’s over 12 per cent of people with MS in England and Scotland. By working with them we’ve gained unique insight into how MS services work on the ground, what makes services most effective, and the challenges of working in different parts of the NHS. We’ve already used GEMSS data to develop a capacity-planning tool for MS specialist nurses, and to publish our recent report MS specialist nursing in the UK: the case for equitable provision.

Over the past two months, the GEMSS teams have analysed their data and written up local reports. The reports provide evidence about what the MS specialist nurse teams do and the value they add, as well as making local recommendations about how

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their services can be improved and strengthened. Some of the recommendations they have come up with include: • delivering more group education courses on topics like symptom management and fatigue management • making contact with people who have been out of contact with services for some time • improving the efficiency of their outpatient clinics (improving reminder systems so that slots aren’t wasted, for example).

The MS Trust will be supporting teams in taking forward these recommendations. In some cases, the services have well over the MS Trust recommended maximum sustainable caseload of 358 people with MS per MS specialist nurse, and so they are going to use the data that they have collected to make the case for an increase in the number of MS specialist nurses.

We will be using the GEMSS data to create a national report, to be published in November, which will highlight the findings of the GEMSS programme and present the evidence for the value of MS specialist nurses.

Initial findings One of the tools we developed with the GEMSS teams is a survey of people with MS. The survey was designed in

part to capture the experience and views of people “The information with MS on it will provide will be the value invaluable. It’s hard work and impact but it’s worth it” – MS of their MS specialist nurse taking specialist part in our GEMSS nurse service. programme Around 1,250 people responded to the survey and we’re now analysing the overall data. Some of our initial findings are: • MS specialist nurses are the profession that people with MS consult about their MS more than any other.

• Nearly one-fifth of respondents had seen neither an MS specialist nurse nor a neurologist in the past year, and so will not have received the specialist annual review recommended

by NICE. • People with MS reported a wide range of positive benefits from having an MS specialist nurse.

However, around a quarter of respondents said that their MS specialist nurse hadn’t helped them in the past year. 10 of 11 GEMSS teams have than the MS Trust recommended sustainable caseload, so it’s clear that more nurses are needed in places.

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

News New awards to recognise excellence in MS management and service delivery

‘It’s hard work, but it’s worth it’

The MS Trust is pleased to support the launch of the first ever awards recognising the contribution of healthcare professionals to improving care for people living with MS. The QuDoS Awards are open to: • MS specialist nurses • other nurses working with people living with MS • allied health professionals such as occupational therapists and physiotherapists • neurologists • pharmacists • GPs • commissioners and other healthcare professionals.

Some of the MS specialist nurse team leads involved in GEMSS have described what the experience has been like. Their comments include: • It is something we had wanted and needed to do for some time. What would have been a mammoth undertaking has been made manageable with the programme and with MS Trust support.

• Evaluation is something as a nurse you talk about doing, yet you never get there alone.

Being part of a supportive and educational body – the MS Trust – and being guided by facilitators, who let’s face it live and breathe evaluation, is highly recommended and most welcome.

• The information it will provide us will be invaluable. It’s hard work but it’s worth it.

• Having data of my caseload has enabled me to talk to managers in a language they understand. Together with the reports from the MS Trust about optimum caseload I hope we will see service expansion in the future.

In total there are ten categories. The entry deadline is 3 September and winners will be announced at a ceremony on 7 November.

“The MS Trust is proud to be associated with the QuDoS in MS Awards,” said Amy Bowen, Director of Service Development at the MS Trust. “These awards will enable teams and individuals across the UK to be recognised for their efforts in improving the quality of care for people living with multiple sclerosis.”

The QuDoS awards are being delivered by the MS Trust in partnership with pharmaphorum, and with the support of Genzyme and Novartis. For more details visit qudos-ms.com

MS Trust redevelops MS Decisions resource

For more on the GEMSS programme see mstrust.org.uk/GEMSS

This October, the MS Trust is relaunching MS Decisions, the independent information resource on MS disease modifying drugs (DMDs).

MS Decisions was originally established by the Department of Health in 2004. However, in recent years, the site’s content had become out of date, and didn’t cover the newer DMDs. The new MS Decisions has being designed to help you discuss starting or switching between DMDs with your MS team. The site will include: • frequently asked questions about starting, switching, stopping and living with disease modifying drugs • a guide to decision-making, covering topics like your attitude to risk, weighing up the pros and cons of

treatment, and how issues about family, relationships and work might affect your decision It will also include an interactive decision aid that gives you: • detailed information about each drug in straightforward language • side-by-side summaries so that you can compare a shortlist of drugs • tools to help you select drugs based on criteria that matter to you Ahead of the launch of MS Decisions, we are interested in hearing about your experience of starting MS DMDs. To take part in our survey visit mstrust.org.uk/decisions

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

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Research update

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

M S A N D U P P E R L I MB PROBL EMS

Could electrical stimulation improve arm movement in MS? People with MS can have problems with upper body strength and movement. This study looked at whether functional electrical stimulation could be a possible treatment Authors Sampson P, et al Title Using functional electrical stimulation mediated by iterative learning control and robotics to improve arm movement for people with multiple sclerosis Journal IEEE Transactions on Neural Systems and Rehabilitation Engineering 2015 Mar 24. [Epub ahead of print] >> Read the summary: tinyurl.com/FES-arm

Functional electrical stimulation (FES) is widely known as a treatment that can help with foot drop (see p19). However, no study has looked to see if FES could help with similar problems in the arms. This small study tested the feasibility of an arm FES system as a potential treatment.

The study Five women with MS took part in the study. They placed their arm within an exoskeleton, which supported their arm during tasks, but it did not move their arm for them. They could control the intensity of the FES in their affected arm, so they could find a setting that was comfortable and also helped them to produce a movement. They performed several tasks with their hand and arm, within a virtual reality environment, both with the FES turned on and off.

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The results The study found that, after using the system, participants had fewer difficulties with their arm. They could move their arms more accurately, both with and without FES input. All the participants reported that they were more aware of their affected arm and after using the system they could reach out more easily and could do twohanded tasks such as folding clothes or using cutlery more easily than they could before.

What does it mean?

The authors concluded that the treatment was feasible and appeared to be safe and effective. This was only a proof of concept study, so a larger study with a control group would be needed to further investigate the potential benefits of using the system for people with MS.

Getting help with arm problems Common MS symptoms such as weakness, spasm, spasticity (muscle stiffness) and sensory changes can affect the upper body, making things like lifting, holding and feeling more difficult. Other MS symptoms such as pain, tremor and visual problems can also have a large impact on upper body strength and function.

If you are experiencing difficulties with your arms, hands or upper body, speak to your MS nurse or GP who may refer you to physiotherapy or occupational therapy services. They can identify what is causing the difficulties and help you work out possible solutions.

For Treatment may involve exercises physiotherapy or to build up upper drug treatments body strength see to alleviate mstrust.org.uk/arm or specific underlying order our free DVD, symptoms such as Move it for MS, on spasticity or pain.

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

p23.

Research update M S A N D L I F E S T YL E

Can looking after your heart also help your MS? High blood pressure, high cholesterol and being overweight can cause heart problems. This study looked at whether they could also have an effect on the brain in people with MS Authors Kappus N, et al.

Title Cardiovascular risk factors are associated with increased lesion burden and brain atrophy in multiple sclerosis.

Journal Journal of Neurology, Neurosurgery and Psychiatry 2015 Feb 26 [Epub ahead of print] >> Read the summary: tinyurl.com/MS-heart-health

Cardiovascular disease is a general term that describes a disease of the heart or blood vessels and includes conditions such as stroke and angina. There are a number of risk factors that can increase your likelihood of developing cardiovascular disease. These include high blood pressure, high cholesterol, smoking and being overweight. As previous research has shown that these risk factors can also have an effect on MS symptoms this study looked at their effect on the brain.

The study 489 people with MS, 61 people with clinically isolated syndrome (CIS) and 175 control participants took part in the study. All participants were clinically assessed by a doctor, had MRI brain scans and completed questionnaires and were interviewed to assess cardiovascular disease risk factors. This information was cross-checked with their medical records.

The cardiovascular disease risk factors looked at were: high blood pressure (hypertension), heart disease, smoking, being overweight/ obese and type 1 diabetes.

The results When the researchers looked at brain scans they found that people with MS who had one of more of the cardiovascular risk factors had brain volume loss (also known as brain atrophy), which is partly due to loss of nerve cells. People with MS who were overweight/obese also had more lesions on their brain scans.

The brain scans from control participants who had been matched to the MS participants for age and gender did not show the same level of brain loss, even though they also had some of the same cardiovascular risk factors.

What does it mean?

The study found that certain risk factors and behaviours that increase the likelihood of cardiovascular problems also affect the brain in people with MS. The authors conclude that reducing or managing such risk factors in people with MS would benefit their hearts but may also be beneficial to their MS, but further studies would be needed to investigate this fully.

Living well with MS When it comes to lifestyle, the advice for people with MS is the same as for everyone else – eat a balanced diet, exercise sensibly, avoid smoking and try not to drink too much alcohol. Following such advice can benefit your MS as well as help protect against other health problems too, such as cardiovascular disease or cancer.

There is a wide range of help and information available to help you make healthier choices. The MS Trust has developed several resources to help you live well with MS, including our Diet factsheet, the To find out more visit: Living well with MS mstrust.org.uk/livinginformation sheet with-ms or order the and Move it for MS, publications on p23 a DVD of exercises for people with MS.

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

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Research update MS AND BALANCE

Could computer games help improve balance and reduce falls in MS? Step training can be used to improve balance and interactive exercise videogames can be used to provide step training at home. This study looked at if these games could improve balance in people with MS

Authors Hoang P, et al Title Effects of a home-based step training programme on balance, stepping, cognition and functional performance in people with multiple sclerosis - a randomized controlled trial Journal Multiple Sclerosis Journal 2015 Apr 28 [Epub ahead of print] >> Read the summary: tinyurl.com/ms-computer-games

The study 50 people with both relapsing remitting and progressive forms of MS took part in the study.

Participants were randomly allocated into one of two groups: training or control. Those participants in the training group had the step training system installed at home. The system consisted of two interactive videogames which used a floor mat containing pressure sensitive pads with direction arrows (front, back, left and right) connected to the television via a console. The two games were used to improve accuracy and speed of responses to instructions given on the television screen. Participants in the control group just continued with their usual level of physical activity.

Participants were assessed at the start and the end of the 12 week study and were followed up for a further six months.

The results In the group that had used the step training system at home, the participants at the end of the study had faster and more accurate steps when

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tested. They also had better balance and walked faster.

The researchers also found significant improvements to reaction time and in manual dexterity suggesting that the stepping exercises also improved the thinking skills needed to reduce the risk of falling. During the six month follow up period those participants who had done the step training reported fewer falls than those who had been in the control group.

What does it mean?

The authors conclude that these are promising preliminary results, showing that the step training system could be a fun, effective and safe form of exercise for people with MS to use at home to improve their balance and reduce their risk of falls. They are planning further larger studies to confirm that this approach does reduce the number of falls in people with MS.

Balance in MS MS can affect balance in a number of ways.

Problems can be caused by damage in the areas of the brain responsible for movement and balance. A number of other MS symptoms, such as weakness or numbness, may also affect the way in which someone walks and therefore affect their balance and increase the risk of falls.

As there are a number of factors which can affect balance, it is important that balance problems are investigated thoroughly For more by a physiotherapist information on or other health reducing the risk of falls professional. They visit mstrust.org.uk/falls can then suggest or order the book treatments to improve on p23. balance.

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

PR O A C T I V E TR E ATME NT

A new era in MS care?

? tive ffec re e Mo sk? r ri we Lo

In the past, people diagnosed with MS were sometimes told to ‘wait and see’ how their MS developed before making decisions about whether to consider disease modifying drugs. But the new MS treatment guidelines published by the Association of British Neurologists in June (see p4) recommend that people with MS should begin treatment as early as possible. Are we entering a new era of proactive MS care? Over the next five pages Open Door finds out what proactive treatment means for people with MS and MS services

If you have relapsing remitting MS you currently have more treatment options than ever. There are now 11 approved disease modifying drugs (DMDs) available in the UK, and more due for appraisal in the coming years.

However, despite these options, until recently, it wasn’t always clear when you ought to begin treatment. If your MS seemed to be highly active and you were having multiple relapses in a short space of time, your neurologist might have advised you to try a DMD. But what if you feel that, for the time, being your health seems to be fine?

The new treatment guidelines published by the Association of British Neurologists in June are the official statement of a philosophy that has been gaining ground among MS specialist health professionals for some time.

Today some neurologists believe that starting DMDs as soon as possible after diagnosis (and in some cases, even before diagnosis if you have experienced a neurological episode classified as clinically isolated syndrome) significantly improves your chances of staying healthy

in the long term.

Many of them also believe that, once you’ve started treatment, you should be regularly monitored with MRI scans, and, if your chosen option doesn’t seem to be reducing MS activity, you should be moved onto other, possibly more effective treatments. And this should be repeated until the evidence on scans and clinic suggests that there is no evidence of disease activity (NEDA).

You can increasingly find discussion of these treatment options when searching for information about MS online, sometimes in the context of quite complex scientific research, and often accompanied with a dizzying range of technical terms and acronyms.

For this issue of Open Door we wanted to get to grips with the arguments for considering early treatment in an open and accessible way. Over the coming pages, we explain some of the terms and details of the theories, talk to some neurologists who now consider that early, monitored treatment is the best

way of helping people with MS, and hear from two women about how they made their own treatment decisions.

Of course, as even the most evangelical proponent of early, aggressive treatment would tell you, the choice of treatment – which, when and how – should be up to the individual, in partnership with their specialist health professionals. Each person will have their own calculation of risks and benefits of particular options – including non-treatment – and each person will have to consider their own situation (including career and family plans) before making a decision.

The MS Trust is currently in the process of redeveloping MS Decisions, the online tool that can support you in your treatment decisions, to be launched in October 2015 and we’d be very interested in your perspective on these issues. Email opendoor@ mstrust.org.uk with your thoughts or visit mstrust.org.uk/decisions to take part in our survey.

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

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Proactiv e trea t m e n t

“I think the proactive approach is very reassuring”

Not everyone with CIS will go on to get MS. But I think there are cases where we should be treating from the first symptoms.

And I think certainly, with people who’ve had two relapses close together, and you’ve made a diagnosis of MS, they Dr Belinda Weller is a consultant neurologist in should be offered treatment straight away.

Edinburgh. She tells us how she first came across And I would prefer to offer it then rather the idea of early, proactive treatment, and the than wait. difference it’s made to how she works with people I don’t think it’s ever too late to begin with MS taking a DMD, unless you are very I’ve been working in MS for over 10 New treatments obviously in the progressive years. 10 years ago if someone was When I returned to the phase. We know that the diagnosed with MS we followed the UK I found people were DMDs probably aren’t guidelines: if you’d had two relapses just starting to talk helpful then. But if you “We now had more in two years, you had a choice of one about proactive and are still having relapses options, so we could of the interferon injectable treatments. escalating treatment.

I think you will benefit change treatments” Sometimes I would guide people, Because we now from DMDs and they but in general I let them make the had more options, should be offered to decision. I didn’t think there was a so we could change you. And if you’re in the lot of difference between them. So if treatment, rather just progressive phase you should people had relapses we didn’t have a switch from one injectable be considered for trials for lot to do really. We didn’t repeat MRI treatment to another. We had treatments for progression. scans and we kept people on the Tysabri that you could escalate to, same treatments. and then a bit later we had Gilenya.

The future of MS treatment So now if I speak to someone I think the idea of early, monitored Treating people proactively who’s just been diagnosed with MS I treatment is certainly becoming more The idea of early treatment was really say: “We’ve got increasingly effective popular. If you follow MS research, I strengthened for me when I was doing disease modifying drugs (DMDs) that think the evidence is increasing. Not just a sabbatical in Australia three years can keep you from getting any worse. starting treatment early, but being ready ago. I found that neurologists over We can’t change things that have to switch treatments, and being aware there were much more assertive in already happened, but if we get you onto that you don’t just go on how the person getting people treated, pretty much at treatment quickly, our aim is to keep you is doing in clinical tests, you should be the point of diagnosis. as well as you are now, indefinitely”. repeating MRI scans.

At that point they were just starting You still get people who are a bit And we really should be aiming to to treat people more proactively uncertain about treatments. They’ve suppress relapses but also to suppress because they had Gilenya a little bit heard that they’ve all got bad side MS activity in the brain. I know that’s not ahead of the UK. There still were effects, or they’re not that effective. So always possible but at least you should people on the first line treatments I say to people, “Look, these treatments be aiming for that. like the injectables, but they also do make a difference. And there is I think we’re now beginning to see got annual MRI scans. And if people evidence that treating earlier gives the benefit of this approach. This is had even one or two new lesions the better results. And while you are on your purely anecdotal, but we’re working on neurologists would advise people to treatment we will try to do regular MRI the MS-SMART secondary progressive switch to a more effective treatment. scans, so we’re checking how your brain MS (SPMS) study here in Edinburgh, I can’t say that I saw immediate is doing, as well as how your doing in and I was looking through our database effects of this approach, because our clinical tests”. for people to take part. I found that we I wasn’t there long enough. But if don’t have that many new people with someone had a relapse you could say, How early?

SPMS coming through. There could be “OK, we can put you on a different How early should people with MS a number of reasons for this, but I am treatment which might be more get treatment? That’s a big question. hopeful that by treating people early and effective”. If you have MS I think that’s We’re probably a bit slower in the effectively we are starting to reduce the very reassuring and encouraging.

UK, because not everyone is treated number of people who are going into the after clinically isolated syndrome (CIS). progressive phase.

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

Pro acti ve tre a tme nt

“If you have MS, you can drive change” Professor Gavin Giovannoni is Chair of Neurology at Barts and The London School of Medicine and Dentistry and is widely credited with popularising the idea of early treatment and treating to target NEDA in MS

When did you first come across the idea of proactive treatment?

Yes, definitely. You don’t need to treat too many people with highly active MS with the newer, more effective DMDs to see a response. A large number of people with MS who have no evident disease activity (NEDA) on the newer drugs are doing remarkable well, considering how active their MS was prior to starting or switching therapies.

This is also supported by the data from the phase III trials of the highly effective treatments.

might attribute it to your diet, when you would have done well regardless.

However, if you have active MS and don’t want to start a DMD, but would rather try a diet and lifestyle changes, that is fine by me. I tend to negotiate and say that “If we repeat your MRI in six months time and there is evidence that your disease is active (that is, there are new lesions or enhancing lesions) this would indicate that the lifestyle changes and diet are not working. Would you then consider starting a DMD?” Invariably people agree to this. If their disease is inactive at six months we wait and see. And if their disease is active we add in a DMD. The issue is not about DMDs versus lifestyle/diet, it is about the holistic management of MS. I personally think DMDs and lifestyle and diet are complementary to each other.

If someone with MS prefers to wait and see, or try lifestyle/ diet changes, would you try and persuade them otherwise?

What can people with MS do if their neurologist doesn’t want to escalate to a more effective treatment?

The idea is not novel: the same principle is used to treat rheumatoid arthritis and inflammatory bowel disease.

Have you seen an improvement in outcomes for people with MS as a result of this approach?

They can get a second opinion. If you Yes and no. I think people with MS have MS you can drive change: ask need to understand that MS is not a pertinent questions of your disease that can be necessarily neurologists and you can controlled by lifestyle and change the way you are diet. There are some treated. people who do well For more from with no treatment, Professor Giovanonni, regardless of lifestyle visit the Barts MS Blog: or diet; they may turn ms-res.org out to have benign MS in the future. If you happen to be doing well on a specific diet you

What is NEDA? No evidence of disease activity (NEDA) is a new treatment goal for multiple sclerosis. Its aim is to treat people with MS to reach a point where they are having no relapses, no disability progression and showing no new or enhancing lesions on their MRI scans. It’s based on a treatment approach that has been found to be successful in the treatment of people with cancer and rheumatoid arthritis.

In the past, treatment of people with relapsing MS has focused solely on reducing the number of relapses.

However, as Eleanor writes on p14, relapses are now understood to be only the tip of the MS iceberg. There can be other MS activity that is not outwardly visible, such as so called silent lesions that do not cause a relapse or symptoms. NEDA aims to also treat this underlying activity as well as the more apparent activity, to prevent a build-up of permanent damage to nerves.

The concept of NEDA is still evolving and there are many questions still to be answered, including a debate over additional measures that could or should be included. To find out more visit mstrust.org.uk/NEDA

Drug effectiveness In the past, DMDs for relapsing remitting MS have been mainly evaluated in clinical trials on their ability to reduce relapses. A drug’s effectiveness as defined by its ability to reduce relapses in clinical trials is only part of the story. As they each work in a different way to prevent the inflammation caused by MS, their effectiveness can vary by person. A drug that is suitable and effective for one person may not be the right one for another. The key aim of treatment is to help people with MS find the DMD that is effective for their level of MS activity while minimising the risk of serious side effects.

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

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Proactiv e trea t m e n t

“Doing nothing carries the biggest risk, in my view” Eleanor was recently diagnosed with MS and, after conducting personal research and consulting with her health professionals, opted for Lemtrada as her first treatment. She explains how she came to her decision After I was diagnosed I read everything I could, on everything from DMDs to diet to ingesting worms, before settling on the sites I found the most informative and reliable. I looked at the MS Trust, MS-UK, MS Society and built on this. I read NHS England policies, NICE and ABN guidelines and found these to be useful.

Information from the MS Trust helped me make sense of areas I struggled to understand. Bart’s Blog has remained a good source of information on all things MS and there are also a number of social media groups where MSers share treatment experiences.

On the Bart’s MS Blog they have the mantra “time is brain” - that is, that early treatment can improve your long-term outlook. This has stuck with me, and the more I read, the more my resolve strengthened to hit this disease hard and early. I’m aware it remains questionable if any of the current DMDs delay transition to secondary progressive MS, but given most relapses leave some damage and it only takes one to devastate, it made sense to me to reduce these as much as possible.

Coming to terms with MS The research blogs were quite hard to understand initially, and also somewhat daunting as they evidence the hard facts and dark side of MS perhaps more than other sources.

I needed to hear it though. I didn’t want sugarcoated advice or snippets of information, I needed information which was direct, full and evidence based to be able to make informed

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decisions. I still can’t say I fully understand all the terminology all the time but I do have a much better grasp through my research, and because of this feel more confident in managing my MS. Becoming more informed has definitely helped me navigate my way through the system and also in coming to terms with the disease.

“I didn’t want sugarcoated advice or snippets of information.

I needed information which was direct, full and evidence based”

My window of opportunity I’d read relapses are only the tip of the iceberg and, although my health had been stable, I wanted to know if anything was going on I didn’t know about. The “time is brain” theory was always at the back of my mind and I wanted to be as proactive as possible in preserving it. Lemtrada had been approved at this point and was already on my radar. I asked for another MRI and after some discussion this was agreed. The scan show new inflammation and so I actively pushed for Lemtrada. My rationale being: this was my window of opportunity, I’d had breakthrough disease while on interferon and it was only a matter of time before another relapse came my way. The first relapse was severe and it floored me. Lemtrada has risks but I believe these are manageable. MS on the other hand is a very real and significant threat to everything I value.

Doing nothing carries the biggest risk in my view.

When I was diagnosed I had a frank conversation with my consultant and while he said Lemtrada wouldn’t be his first choice for me (he suggested orals), I was eligible and he would support and respect my views. I had

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

prepared for the appointment and my decision was an educated one.

I am extremely thankful that I have a proactive neurologist who hears me out. While we might not always agree, there is mutual respect and understanding. For the first time I felt hope for the future.

I’ve now had my first treatment, and at the moment I have no symptoms or disability. With many working years ahead of me I hope this continues for a long time to come. It’s been a long road but right now I feel I have everything to live for. Lemtrada may not be a cure, but for now at least I can take comfort knowing I’ve done what I can with the tools available to me. The rest as they say is up to fate.

Pro acti ve tre a tme nt

Considering the risks When Ema was diagnosed, injectable MS drugs seemed to be keeping symptoms under control. But a severe relapse made her consider more powerful treatments When I was first diagnosed, not at all comprehending the seriousness of what I was being told, my reaction was quite blasé. Nonchalant. Insouciant. Unlike the approach of so many people more recently diagnosed, I didn’t immediately get online and start researching my options. Well, I bought some flaxseeds and vowed to stop drinking.

Once my first notable relapse was all but over, my first MS nurse (I’ve moved region a few times since it all started), handed me a booklet that outlined the key things you’d need (want?) to know about the injectable DMDs: Avonex, Rebif, Betaferon and Copaxone, and told me to go off and make a choice. The criteria I elected to use for this most important of decisions was: a) how many times do you have to inject every week and b) how long’s the needle? I like to think efficacy and possible side effects were also a consideration but, hey, I was 27!

I did not have time for this.

Beginning injections Injections for Rebif are thrice weekly, sometime followed by pretty nasty ‘flu-like symptoms’, although I was lucky to never suffer these. I was on this for about a year, feeling fine and diligently filling in my Rebif branded injection diary, when a regular blood test revealed I had a low white blood cell count. No worries (I was still pretty casual about the whole chronic illness game), Copaxone it shall be then!

The reason that I didn’t go for this the first time around is because you have to inject every day. Yes, you heard me correctly: every single day. My second MS nurse (I lived somewhere different now) went through site rotation and why that’s so important with me, and then I was

“I didn’t immediately get online and start researching my options. Well, I bought some flaxseeds and vowed to stop drinking”

off – with a new (this time Copaxone) branded injection diary that I would, again, be filling in diligently. I really didn’t like the daily routine of this particular drug. I found injecting into my arm (the fleshy part near the top) impossible – eventually my husband did it for me – and also really painful.

But, the most important thing is, I didn’t have a single relapse whilst on these DMDs.

Famous last words?

2013. The year of the “devastating” relapse (words of my MS nurse). As this relapse (and I think it was actually three spaced out, the third being the devastating one), slowly began to retreat, the issue of medication was back on the table. My neuro, nurse and family were convinced that Tysabri was the one. I was unsure. I’d heard about PML (or, rather charmingly, progressive multifocal leukoencephalopathy) and I didn’t want to take the risk – still, despite everything, remaining blinkered to the very real long-term risk of further relapses. But I took the JCV test, just to see; obviously I was positive. After thinking, and then thinking some more, veering between yes and no, reading, and rereading any information I could find, I went for it. After the first infusion, I panicked constantly, seeing everything as a possible sign of PML. After the second, I was (maybe) a little calmer.

Now, after the eighteenth, I barely think about it at all. Although my absolute and final red line was always drawn under the twenty-fourth. I’m now considering my ongoing treatment options.

If I were diagnosed now? I’d go straight for the hard stuff. Kick MS down before it has the chance to even stand up.

A devastating relapse In 2011, I got married. My husband and I decided we might want to start a family and, on my nurse’s advice, I stopped the Copaxone. Two things: 1. we (I) hadn’t really thought seriously enough about the prospect of children, I just really didn’t like the injections and not doing them anymore was great; 2. I wish I hadn’t stopped.

2012. Moved again. No sign of MS – well, apart from an odd sensation, like sand under my skin in my hands.

I go to meet my new MS nurse; I tell her how ridiculous I feel saying I have the disease when I’ve been completely fine for five years; I tell her that I think it’s benign; I tell her I’m thinking about coming off medication for good.

For more info on MS disease modifying drugs see mstrust.org.uk/DMDs or order the book on p23. And look out for our new online DMD decision aid, MS Decisions, coming to our website this autumn.

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

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PRA CT I C A L T IPS

Dealing with ataxia and tremor Ataxia is the medical term that describes a lack of muscle coordination anywhere in the body.

Typically, it can lead to tremors in the arms, legs, head, trunk or eyes and can even affect speech and swallowing. Currently there are no drugs that will get rid of the shaking or tremor that is caused by ataxia. In this article, physiotherapist Wendy Hendrie introduces some ideas that many people with MS have found helpful. Try them out and see if they work for you or, if you prefer, ask for an assessment by a physiotherapist with expertise in MS

Walking People with ataxia tend to walk with their legs apart to try and keep their balance and it can be difficult for them to move their legs smoothly forwards with each step. As a result they can lurch from side to side and this can make balancing very difficult and lead to falls. Many spend their day sitting for long periods as walking feels so precarious. Prolonged sitting, however, can make the condition worse as the muscles will gradual weaken over time and this can make balancing even harder. Here are some tips which may help: • Keep active and exercise as much as possible to keep the muscles strong. Strong core muscles can help to minimise the effects of ataxia on walking and transferring. Activities which involve using balance muscles, such as yoga, Pilates, Tai Chi or horseriding, may also be helpful as they keep the coordination and balance systems of the body working as well as possible. If you can’t attend these classes, try standing regularly at home with a chair behind you and a table in front, so that you can safely practice balance exercises.

• Using trekking poles instead of walking sticks may help.

Putting sand in the shaft of the poles can make them feel more stable.

• Wearing a back-support belt around your middle may help or even Spanx underwear (available for men and women!). If these help, you may find a tailor-made Lycra

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•

•

•

•

garment useful. You would need a referral to the orthotic department to be measured for these garments.

You may feel steadier if there is extra weight going through your body. Try hanging small ankle or wrist weights on a belt around your waist, or put weights in a pocket of your waistcoat or gilet. Start with small weights and gradually increase until you feel more stable.

Sitting on a wobble cushion or piece of soft foam may help to keep your muscles ‘primed’ when you are sitting. You may find that your balance is better when you first stand up.

Thinking about and visualising the journey across a room before you do it may help you to perform it more steadily.

Try using a four wheeled rollator (frame with wheels) for walking. The ones with four wheels are more stable. Some people find it helpful to weigh the frame down. Try putting bags of sugar (or similar) in the basket until the weight feels right for you. Don’t make it too heavy or it will be tiring to push it. Once you have found the right weight, replace the sugar with weights bought from a sports shop.

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

Practi ca l T ip s

Using your arms • Make sure your body is as well supported in the chair as possible before you move your arms.

If necessary, put cushions down the side of the chair and roll up a small towel and put in the small of your back. The more stable you are in sitting, the less the tremor will be when you move your arm.

• Keeping everything still and just moving one joint at a time may also help in people with severe tremor. For example, support your arm on a table and just move at the elbow to pick up a cup.

• Small weights fastened around the wrist (available from sports shops or online) may help to dampen down arm tremors. Be careful that the weights don’t make your arms tired. Let a bit of the sand out if they feel too heavy.

• There are many pieces of equipment which may help dampen the tremors when you are eating or drinking: Neater eater; weighted cutlery; Easy 2 drink cup; valved straw; nosey cup; plate guard. You may need an assessment from an occupational therapist.

• Keep cool. Hot muscles don’t work as well so try wrapping a cold, damp scarf or tea towel round your neck for five minutes before you perform a task. Cooling the muscles of the forearm for ten minutes can also help to dampen the tremor and may enable you to eat a meal. A cold wine-bottle sleeve (available from supermarkets) placed on the forearms during a meal may help to calm the tremors.

• Try putting a double layer of size B Tubigrip from your fingers to your armpit (cut out a small slit for the thumb). This can often help to dampen

the tremor. If this helps you may find a Lycra garment would be useful.

• Try covering cup handles with scrunched up tin foil.

The extra sensation it gives makes the muscles work harder.

• If the tremor gets worse as you get closer to an object, try overshooting the target by a few inches and pick up the object on the way back.

• Try putting the object you want to pick up to one side of you rather than in front. Trying to aim for an object that is directly in front of you can make the tremor worse. Using your peripheral vision may also help to calm the tremors rather than looking directly at the object.

The ideas listed above may help some people with ataxia to function more easily and independently.

Sometimes it is worth trying more than one the idea at a time eg put Tubigrip on the arm and use your peripheral vision to pick up a cup. Although these suggestions will not cure ataxia they may help to minimise its effect and enable people with this distressing condition to function more independently.

For more info on ataxia and how to manage it visit mstrust.org.uk/ataxia and ataxia.org.uk

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

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FE S

A spring in your step Foot drop, or dropped foot, is a symptom which affects many people with MS. It’s caused by weakness in the ankle or disruption in the nerve pathway between the legs and the brain, which can cause trips and falls. However, it can be treated by using a functional electrical stimulation device, which discharges a small electrical pulse to your nerve to help your foot lift correctly

Dr Paul Taylor Paul works in the Clinical Science and Engineering department at Salisbury District Hospital, and has led on the research and development of FES. Functional electrical stimulation was first developed in the US in the early 1960s. It was tried with people who had strokes, and although it showed some promising results, the technique failed to get into regular clinical practice. When we started here in Salisbury, FES was seen as a research thing only. It wasn’t in regular clinical use at all.

We started using FES in the mid1980s. Originally our work was with people with spinal cord injury. We developed a range of techniques to try and help people stand and walk better.

And it was from those devices that we developed the devices for multiple sclerosis.

We’ve found it can be very effective.

Of course it’s no cure for multiple sclerosis, but the data we’ve collected from the several hundred patients we’ve seen indicates that people’s walking ability improves significantly.

They’re able to walk faster, with less effort. We have reduced trips and falls. We have two studies that show falls reduced by about 72 per cent, so people with foot drop are walking more safely.

People report that they feel a lot more confident when walking. I think it’s a lot to do with the fact that they feel safer, they’re less likely to trip and carers and partners of people with MS, report that they feel more confident in leaving the person they’re caring for

18

without assistance because they know they’re going to be safe.

In our experience FES can help across a whole range of disability.

Some people use FES only for longer journeys, if they’re walking long distance. The rest of the time they don’t need the extra help. And there are those that need it all the time.

They might only be able to walk 10-20 metres, but that’s enough for them to get around the house, to get to the loo or get from the front door to the car.

And it works for everyone in between.

It is a technique you can choose to use in different ways and make it work for your own particular problems and lifestyles.

Here at Salisbury we’re really very grateful to the MS Trust and its supporters. The MS Trust funded the first randomised control trials into the use of FES and has really been instrumental in getting it established in MS care.

Christine Singleton Christine is a clinical specialist physiotherapist in Birmingham and has developed services using FES I first came across FES in 1994. At that time I was working as an outpatient neurophysiotherapist and I had been looking for ways of creating a ‘carry over’ for the treatment that I gave to people with drop foot. So I was very receptive to this idea that something could be used continuously as the patient was walking.

Before FES treating drop foot was was very much about my skills as a neurophysio – hands on, strengthening

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exercises, posture, alignment, pain management, various orthotic devices, such as splints, if appropriate.

So when I discovered FES and then tried it out and saw almost immediately the benefit it had, it was my duty as a professional to make sure that people had access to it.

With my experience as a clinician, and with the experience of people who used it, we were able to feed back to Paul and his team about the improvements that could make the technology even more easy to use. It was a really effective model.

People took to it straight away because of the difference it made for them. The first person I saw from 20 years ago has only just stopped using the stimulator. In my clinical experience I’ve seen 845 people with MS just for FES. Of those, 327 are currently using FES at the moment.

And of those 327, 123 of them are still working, and that’s really important.

There is an economic benefit there, as well as everything else.

I’ve recently reviewed one person with MS who has been using FES for eight years. She cannot walk without the FES, but with the stimulation she can walk 10.5 metres a minute. So it’s keeping her independent. She was telling me how good it is to be able to still walk, the benefits for her digestive system, for her breathing, posture.

She literally uses it from the moment she wakes up in the morning to the moment she goes to bed at night.

You might say the decision to use FES for MS drop foot appears obvious but we recognise it’s not appropriate for everyone. But it has been a battle

ot is re’s n.

FES

The control unit enables you to fine-tune stimulation settings and can attach to your belt

The stimulators can be worn in a cuff or implanted and deliver a small current to the peroneal nerve, causing the foot to lift

When the foot is

The heel switch is placed into your shoe

But the heel switch

...and sends

...this makes the

...as it swings

When the heel hits

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In our local MS group for 20 years to get the service to calf... Anne Wise on the switched offpeople until are very aware of FES. We have people with MS. On the education Anne was diagnosed with MS in the the next step. a weekly front: to actually let people know that it’s available. On the technical front, in the sense that it’s had to develop and improve along the way to suit various needs. And on the funding front, clearly. The biggest barrier for us has been dealing with the constant changes in the NHS. The use of FES is a great model for holistic care for people with MS. It eventually becomes an annual review: people can manage it themselves, and if they can’t, they have access to the physio team at any time. And because we see them annually, we can also signpost and deal with any other issues that they may have. And through the experience we have, we now know quite a lot about MS. I would cautiously say that we’re at the tipping point with FES now. It just feels like we’re at the point where they can’t ignore us any longer! We have enough evidence. We have good partnership with the various companies that make the stimulators. People with MS, their health professionals, the MS charities: there’s a good partnership now to push this forward.

To find out more about FES visit mstrust.org.uk/fes

late 1980s and started using an FES device last year

I first started experiencing drop foot about 12 years ago. I was finding I was lifting that leg from the hip: my gait was completely wrong. I was tripping over, dragging the foot. Quite often over the door step. My foot just wasn’t lifting. But I only started using FES round about August last year.

I knew about FES because I was on the trial 10 or 11 years ago. It didn’t work for me then. I had been using a splint. But it was very difficult to get it on. I live by myself and I really needed help because flexing the foot to get it into the splint I found difficult. It was very uncomfortable.

Last year my leg was dragging so much more and I felt I ought to do something about it. So I asked my doctor if she would refer me, and she did. The FES device takes a little bit of getting used to, getting it in the right position. But after a while it just comes naturally.

I put it on first thing in the morning and usually it stays on all day. You feel there are sensations but you do get used to those. What difference has it made to me? I can walk much easier.

I can walk further. I don’t drag my leg so much. I can do more with it. Stairs are easier. I have always been involved with social things anyway, but it does make it easier yes.

fitness group and there are three of us that use it. One lady particularly has a lot of trouble walking, and if she hasn’t got her FES then she is really lost.

Another one wears it most of the time, another wears it occasionally if she knows she’s going to be on her feet a long time.

Would I recommend FES? Oh yes, definitely yes. When I first had it I didn’t wear it all the time. If I was staying indoors all day I didn’t bother to put it on. But I do now. It’s made a huge difference in keeping me mobile and making sure I can get out and see people.

To find out how you could support the MS Trust’s work funding projects like FES research visit mstrust.org.uk/ mstrustprojects

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

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GET I N V O LV ED

Where there’s a will...

When Vicky Edwards was buying her first property it made her realise how important it was to make a will. As well as ensuring her loved ones were provided for in the event of her death, it was also an opportunity for Vicky to support her favourite charity In 2010 I went into joint ownership of a lovely bungalow with a close friend. I was 29 and on a low wage and this seemed like the only way to get on to the property ladder. That same year I was diagnosed with multiple sclerosis. I knew nothing about MS and was relieved to be given lots of information by my MS nurse, nearly all of which was from the MS Trust.

With the sale of the property nearing completion I had to go to the solicitors and sign the papers to make it official. While we were there, the solicitor asked us both if our wills were up to date. Wills! I hadn’t thought about doing a will. That question seemed like something so negative during what should have been a happy moment. It wasn’t something that I wanted to think about.

We spoke further about it and I started to realise how important a will is. It had never crossed my mind before what might happen to all my belongings (estate) after I am gone. The solicitor explained to me that if a person dies intestate - without a will - their estate is shared out according to pre-set rules.

It was made clear to me that if I died without a will and there were no surviving close relatives, then my half of the property would pass to the Crown. This would make it incredibly difficult for my friend who owns the other half of the bungalow to be able

20

to take ownership of my part of the property.

We both booked appointments to go back to the solicitor to make our wills. It occurred to me that people don’t generally think about making their wills until later in life. But what if the unthinkable happened? What if something happened to you unexpectedly and you hadn’t made arrangements? The more I thought about it, the happier I was that the solicitor had brought it up and that I had an appointment.

One more thing crossed my mind. What would happen to my estate if the people I’d written into my will had also died and I didn’t have any surviving close relatives? I spoke to the solicitor about this at my appointment.

She explained that in this case my estate would pass to the Crown or I could nominate it to go to a charity of my choice.

She also told me that I could consider leaving a gift in my will to charity - either a specific amount or a percentage of my estate.

I loved the thought of this! I didn’t have to think hard about who the charity would be. The MS Trust has helped me so much since I was diagnosed and I’m sure they will continue to help me for many years to come. That is of course if people like myself continue to support the charity by leaving gifts in their wills.

Remember A Charity in your Will Week 7-13 September 2015 is Remember A Charity in your Will Week - an annual awareness week designed to encourage more people to consider leaving a gift to charity when writing a will. Three quarters of people in the UK regularly give to charity in their lifetimes, yet only 7% currently include a charity when writing a will.

Leaving a gift in your will to the MS Trust need not be complicated; in most cases a solicitor will be able to draft a simple will from around £100. Gifts of any size are most gratefully received and you can be sure your gift will be put to good use, enabling us to continue providing practical support to people living with MS.

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

Find out more about writing a will and leaving a gift to the MS Trust mstrust.org.uk/legacy

Get i nvolve d

Get involved!

There are lots of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising

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

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 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.

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!

Dress up in your free Santa suit and run, jog, walk or use your wheelchair or scooter to get around the 5K or 10K route in Victoria Park on 6 December. mstrust.org.uk/santarun

Adventure challenges for 2016…

Monster Ski, Chamonix & Courmayeur Ski or snowboard the height of Mount Everest every day in our exclusive Monster Ski challenge, taking place from 14 to 18 March 2016. mstrust.org.uk/monsterski

London to Paris Tour de France Cycle This special edition of the London to Paris cycle ride from 20 to 24 July 2016 will give you the chance to watch the Tour de France Finale live on the Champs-Élysées. mstrust.org.uk/londontoparis

Alps Trek, France, Italy & Switzerland Trek through 3 countries in the Mont Blanc region from 7-11 September 2016. A challenging route with lots of ups and downs and breathtaking views. mstrust.org.uk/alps

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

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

21

15 Liz Thompson MS Trust volunteer

minutes with

Liz Thompson was diagnosed with MS in 2009. While looking for information to help her make sense of her condition, she discovered the MS Trust website. She very soon became one of our most passionate supporters (and as result has developed a new career as a cake baker!).

One of the ways she supports the work of the MS Trust is by volunteering every year at her local Cards For Good Causes shop. We asked her what motivates her to volunteer, and what she gets out of working in the shop.

How did you first come across the MS Trust?

When I was diagnosed with MS, I didn’t really get any information from my neurologist. My way of dealing with anything is by getting information. If you understand what something is and if you can start to understand the implications of it, for me that gives me the ability to cope with it. When I found the MS Trust website, I felt that they gave a lot of information but in an easily accessible way, so it’s easy to understand. But it’s not patronising. The MS Trust had the right balance. And that’s why I started supporting them.

When did you start volunteering for the MS Trust?

I think I’ve been volunteering for the MS Trust in a Card for Good Causes shop for 5 years now. I think it was 2010 when I first started. I love it, absolutely love it.

For me now, spending some time volunteering in the shop, it’s part of my build up to Christmas.

It’s the thing that makes me feel that Christmas is coming! Like many people with MS, I don’t go out shopping very often because I find it really disorientating.

Particularly when it’s busy at Christmas: it’s just too much. So to have the experience of being in the card shop, that’s my Christmas experience of shopping. It’s just lovely.

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What exactly do you do at the shop?

In the shop I work in, I’m serving at the till. The way that we work, there’s two of us there: you’re partnered up with someone you may or may not know, which is lovely. And between us we work the till and serve the customers. There are seats there, so we generally do two to three stints and you can sit down if you want. There’s some tidying up to do, depending on how mobile you are.

What have gained from volunteering at the shop?

I love getting involved in fundraising or supporting because I think it’s just really rewarding. And knowing that you’re doing it for some benefit - it makes you feel good.

It’s also great to feel involved in the community. Most of these shops are really a central part of the local community, so you get to see a lot of people coming in. They can be people you get chatting to that you didn’t know or people that you do know and haven’t seen for a while, which is lovely. It’s really sociable.

And also, of course, meeting people who you’re working with as well. If you’re partnered with a different person each time, that’s really lovely, and there are people I’ve kept in touch with, and who subsequently come to the annual fundraising fete that I hold for the MS Trust.

The other thing, which is particularly relevant to me, is that with my MS, I found I wasn’t going

out very much, because it’s very difficult to go out on my own. So I was finding I was only going out with my husband, which can be quite isolating when he’s at work. And the shop felt like a very safe place to go. You can park outside and you don’t have to do any walking round or standing, but you still get the social aspect of meeting and talking to people.

What would you say to someone who was considering volunteering?

I’d say definitely go for it. If you’re thinking “I’m not quite sure about it, I’m not quite sure what to do”, well then ask the shop manager for just one shift. Then once you’ve tried it, it may be that either you could volunteer for some more later in the same season, or it will then give you the experience to have more confidence and more motivation to do it the next year. I would definitely recommend volunteering to everyone. Everybody who volunteers at our shop, they’ve all got their own reasons for doing it, and they all enjoy it too. There’s a lot of people who’ve been doing it for years and years.

And I certainly intend to be doing it in several years as To find out more well. It’s great. about volunteering

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

for the MS Trust visit mstrust.org.uk/ volunteer

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