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Quarterly newsletter of the MS Trust

Open Door February 2014


21 years of the MS Trust making a difference for everyone affected by MS

2014 Also in this issue How we’ve helped to save an MS nurse post

How to keep your bones healthy

Helping kids understand MS

MS Awareness Week 2014!

Sunday 18 May, Goodwood, West Sussex There’s nothing q uite like it! On e minute

have a gro you up of guy s pulling a lorry an d the nex t you hav a group o e f mobility scooters, followed by people dressed as banan as and yo u ngsters on skates . I love it !

With a 50 mile cycle challenge in the morning and a fully accessible family fun event in the afternoon, the MS Circuit Challenge is a hugely enjoyable day out and a brilliant way to support everyone affected by MS. To find out more call 01462 476707 or visit


Welcome to the first Open Door of 2014 AS YOU WILL see from our front cover, this year the MS Trust turns 21. In this special issue we’re taking the opportunity to look back at some of the progress in MS care and support that’s been made since we were founded back in 1993. In the feature starting on page 10 you can read Simon Webster from our info team, Jill Lovell, one of our earliest supporters, Nicki Ward-Abel, one of the architects of our MS nurse support programme, and Anne Thompson, one of our most dedicated fundraisers, all looking back at the big developments of the last 21 years. Elsewhere in this issue we’ve included a copy of our new publications catalogue, listing the full range of trustworthy, accessible information we provide free for anyone affected by MS, including our new guides to dealing with MS bowel and bladder issues. Since 1993 the MS Trust has responded to changing times with information you can rely on, helping you sort the fact from the fiction and make the choices that are right for you. We’re only able to keep up this work thanks to our friends and supporters: people like you. Also enclosed you will find an appeal letter from one of our founders, Chris Jones, explaining the difference our information has made to many people affected by MS, and how you can help. We’re extremely grateful for all your support. Every donation, no matter how big or small, makes a difference. Finally, in this issue we begin the build-up to MS Awareness Week, which this year runs from 28 April–4 May. MS Awareness Week is a great opportunity for all of us to get involved, raising the profile of MS and reaching even more people affected by MS with the right information for them. There are lots of ways to join in: organise a Be Bold in Blue fundraising event, take the MS Trust 21 Challenge and spread the word, or tell the world about your amazing MS Super Team. We can help you every step of the way. See the back page of this issue for more details or visit for the latest updates. Best wishes




Research update

News on drug appraisals, trial data and benefits changes, plus updates on our work safeguarding MS nurse posts and details of MS Life 2014

New research on family risk, vitamin D and how exercise can help combat MS fatigue


MS support over 21 years Simon from our info team looks at how the MS Trust has responded to changing times by providing information people can trust 14 Jill Lovell remembers the early years of the Trust and looks at how things have changed for people with MS 15 Nicki Ward-Abel looks back at the difference the MS Trust has made for MS nurses


Helping kids understand MS How can accessible information help children and young people understand their parent’s MS? We look at the value of MS info days, and designer Alison Thomson introduces a new website


Lovely bones People with MS are more prone to developing thinning bones. Janice from our info team looks at what you can do to stay healthy


Get involved Liz Hilland explains why she decided to zipslide across the Tyne to help people affected by MS 21 Are you ready to go large for this year’s Bold in Blue fundraising campaign?


15 minutes with Anne Thompson One of the MS Trust’s most dedicated fundraisers answers a few of our questions

Pam Macfarlane Chief Executive, MS Trust PS: Did you know that you can now read Open Door online, on your tablet, by email or in large print? To find out more visit

Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E W Registered charity no. 1088353 Open Door February 2014

Freephone 0800 032 3839


Affected by any of these news stories? Call our info team: 01462 476700


Keep up to date with the latest MS news by signing up for our weekly email round-up

For full references see

New drugs for relapsing remitting MS Throughout 2013 the MS Trust has been actively involved in appraisals for new treatments for relapsing remitting MS. As we write there are several imminent key decisions Teriflunomide (Aubagio): yes in England and Wales, decision pending for Scotland NICE has approved the prescribing of teriflunomide in England and Wales. It should start to be be available from April. Teriflunomide is a disease modifying drug that is taken as a tablet once a day. In clinical trials, people taking teriflunomide had about one third fewer relapses compared to placebo: roughly the same as beta interferons and glatiramer acetate. The most common side effects are nausea and diarrhoea, hair thinning and increased blood levels of liver enzymes (suggesting a possible effect on the liver). SMC has met to consider teriflunomide for use by the NHS in Scotland and a decision is expected on 10 February.

Alemtuzumab (Lemtrada): NICE gives initial no decision for England and Wales In December NICE provisionally announced that it does not intend to recommend alemtuzumab and asked for further detailed information. As the manufacturer has now supplied a large amount of extra


data, NICE has postponed the next committee meeting to 18 February in order to review the new evidence. We remain hopeful that NICE will reconsider its draft guidance. A final decision is expected in April.

Dimethyl fumarate (BG12, Tecfidera): European licence has been granted

Laquinimod (Nerventra): turned down for European licence The European Medicines Agency considers that the risk/ benefit profile is not favourable. The manufacturer has stated they will appeal against the decision.

A delay in issuing an European licence has now been resolved. The NICE appraisal process was on hold but will now resume. Look out for details on our website ( from 19 February.

Open Door February 2014 Facebook: Twitter: @mstrust

Read factsheets on all these drugs and see the newly revised edition of our book, Disease Modifying Drug Therapies. Visit and or order on p23.

For more on all symptoms, drugs and treatments see our A-Z of MS:

News Benefits changes cause anxiety

Pharma companies criticised for not publishing trial data The failure to publish all clinical trial data may be putting people at risk according to MPs. A report by the House Of Commons Public Accounts Committee in December criticised pharmaceutical companies for not publishing all the data from trials which they have funded. Richard Bacon MP, a member of the committee, drew attention to research suggesting that only about half of completed trials are published and that favourable results are more likely to appear than negative data. Acknowledging that there are moves to make more research data on new drugs available, the committee had concerns that data on currently available drugs are not all in the public domain. It recommended that the Department of Health should “ensure that the full methods and results are available to doctors and researchers for all trials on all uses of all treatments currently being prescribed”.

The views of the committee reflect moves by the European Medicines Agency, the European drug regulator, to improve access to research data when licensing new products. In the UK publication of research data is supported by the All Trials campaign ( whose signatories include research funding bodies, professional bodies and health charities. “People with MS need to be able to see all MS the available evidence about treatments in order to make properly informed decisions. We welcome this report and would support further discussion about how best to improve transparency of trial data. These may not be easy issues to resolve but we need to be sure that people with MS and their MS team have the full picture so that they can make choices that are right for them.” MS Trust comment

Open Door February 2014

A poll of disabled people’s experiences of the changes in the welfare system has found that anxiety might be making symptoms worse. The poll was run between July and October 2013 by the Disability Benefits Consortium, a national coalition of more than 50 charities. Almost 4,000 people responded to the poll, of whom 1,476 have MS. Two thirds of the people with MS reported anxiety about their access to benefits and half said the anxiety was affecting their health. Particular changes that have been causing concern include the criteria for the new Personal Independence Payment (PIP). These are tighter than for Disability Living Allowance (DLA), which it is starting to replace. This means that some people previously eligible for DLA will lose this benefit. The assessments for Employment Support Allowance (ESA) are also a cause of anxiety. A failure to appreciate the fluctuating nature of MS has led to people who should be exempt being judged as fit for work. “Living with MS is difficult. Uncertainty about MS access to benefits or possible loss of existing support only adds to the stress, which understandably may have a negative impact on someone’s health. It is crucial that these changes are reviewed so that they are more appropriate for the needs of people with MS.”lopmen MS Trust comment

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News from the MS Trust S A FE G UA R DI N G M S SER VIC ES

Why we’re working with Parkinson’s and epilepsy charities to safeguard specialist nurses > Joint response to threats to specialist nurses > New online resource to be launched this spring At the MS Trust we believe that everyone with MS should have access to an MS specialist nurse. We believe that MS specialist nurses are the best people to help you manage the whole range of health issues around MS. We know that there aren’t enough MS specialist nurses in the UK. We also know that there are increasing financial pressures on the NHS. In practice this means that NHS organisations are trying to work out how to cut their costs, and MS specialist nurse posts are at risk, along with other staff. Some MS specialist nurses might have to work at least one day a week on the wards. That means one day a week less to help people with MS manage their condition. We know that people with other long-term neurological conditions, for example epilepsy or Parkinson’s disease, are also concerned about the future of their own specialist nurses. That’s why we’ve been working with Parkinson’s UK, the Epilepsy Society and Epilepsy Action to support specialist nurses under increasing pressure. Together we’re developing a new online resource to help specialist nurses in situations where their roles are coming under threat. The resource will offer help


with dealing with six common problems: • downgrading – where the employer wants to reduce the professional banding (and therefore pay) • redundancy • change of role from condition-specific to general neurology nurse specialist • redeployment – where a nurse is asked to spend more time on the wards • vacancy – where a vacant specialist nursing post goes unadvertised and there appear to be no plans to fill it • change of employer from NHS to independent provider We hope that this resource

will put specialist nurses in a much stronger position to defend their roles. We will have more Together we’re information on this developing a new urgent project in online resource to help the next issue of specialist nurses Open Door. You can keep up to date with progress by visiting our website, signing up for our news alerts or following us on social media. To find out more about our innovative support for MS specialists see the story on page 7. To find out how you can get involved visit

Open Door February 2014 Facebook: Twitter: @mstrust

News from the MS Trust S A FEGU A R D I N G MS S ER VIC ES

How we’ve helped secure the future of services for people with MS in Northumberland > Our GEMSS programme helps safeguard the role of an MS nurse at Northumbria NHS Trust > The programme enters its second phase with ten new teams from around the UK In recent issues of Open Door we’ve told you a lot about our nurse support programme, GEMSS (Generating Evidence in MS Services). Last year we ran a pilot project helping four MS services around the country measure the impact of their work so they can demonstrate to managers what a vital, costeffective service they deliver. Because a lot of this work is about managing data and writing reports it can sometimes feel a little abstract: what practical difference does it make to you if you’re affected by MS? Well, we’ve recently found out that our work has been instrumental in keeping Miriam Forster, an MS nurse in Northumberland, in a permanent post. This means that people with MS in the region will continue to have access to high

quality, expert MS care. Northumbria NHS Trust covers one of the largest areas in the country. Because of the the distances many people with MS aren’t easily able to access clinics. In the last year Miriam and her colleague, Jane Metcalfe, traveled over 18,000 miles, making sure that everyone with MS, no matter where they live in the county, was able to receive expert advice and support. However Miriam’s post was not permanent and was due to come to an end this year. With only one MS nurse covering such a vast area the service would inevitably deteriorate. Ultimately, with much more limited access to specialist support, advice and information, the wellbeing of people with MS could suffer.

But thanks to Jane and Miriam’s participation in GEMSS, and the evidence they were able to produce, we are delighted to report that Northumbria NHS Trust has now made Miriam’s post permanent. This is a great result for people with MS in Northumberland, but also for everyone affected by MS in the UK. We’d like to thank everyone who has supported our work protecting MS services. We’re delighted to see it already making a real-life difference. To find out more This year our GEMMS about our MS programme enters a service support new phase, with ten new programme, visit teams of MS nurses and therapists. We look forward to helping them deliver even better services for everyone affected by MS.

MS Life 2014 MS Life 2014, the world’s biggest lifestyle and information event for people with MS, will take place at the Manchester Central convention centre on 26 and 27 April and we’re pleased to announce that the MS Trust will be there. We’re delighted to be working with the MS Society and Professor Dawn Langdon to put on a workshop on maintaining and improving your memory, featuring some of the resources from our innovative Staying Smart website ( MS Life is organised by the MS Society and is a great opportunity to hear the latest from the MS researchers, find out about how to manage your MS and to meet other people with MS too. Registration is free. Find out more about the programme, and details of grants to help with the cost of travel if you live outside Manchester, at

Open Door February 2014

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Research update

Keep up to date with the latest MS research by signing up for our weekly email


MS family risk: lower than we thought? Although MS is not considered hereditary, people with a close relative with the condition do have a higher risk of developing MS than the general population. This study found that the risk was lower than had been reported in previous studies

Authors Westerlind H, et al Title Modest familial risks for multiple sclerosis: a registry-based study of the population of Sweden Journal Brain 2014 Jan 17 [ePub ahead of print] >> Read the full study:

How this study was carried out Sweden records information about its population on a number of registries. From these, researchers identified information about family relationships for 28,161 people with MS, about 96 per cent of the Swedish MS population. The registries allowed researchers to see how many brothers, sisters or children of the individual with MS also had the condition. The data for each person with MS was matched with up to ten records from people not affected by MS.

What was found? The results showed that the risk of the brother or sister of someone with MS also developing the condition was about seven times higher than in the general population. Previous


studies suggested this risk was about nine times higher. The risk for a child of someone with MS was five times higher, rather than the previously reported seven times. The risk for the identical twin of someone with MS was found to be about one in four, which is consistent with earlier studies. The risk for adopted children was not significantly different from that of the general population. The study also challenged the idea that relatives of women with MS have a higher risk than the relatives of men. In this study the risks were similar regardless of the gender of the relative with MS.

What does it mean? The study shows that, although there is a genetic element to developing MS, there are other environmental factors that must

also be involved. Identical twins have the same genes, and yet in this group, three out of four twins of someone with MS did not develop the condition. What these environmental factors might be is unknown, though the researchers mention that smoking, night shift work and body mass index have all been associated with higher risk of MS and are less likely to be issues that would affect both twins. Although the risk of developing MS is greater in people with a close relative with the condition, the overall risk of MS is low. For instance, of the 42,743 people in the study who had a parent with MS, only 515 (1.2 per To find out more cent) had also been read our book MS diagnosed with the Explained: visit condition.

Open Door February 2014 Facebook: Twitter: @mstrust

or order on p23

Research update M S A N D V I TA M I N D

MS and vitamin D: the jury’s still out The effects of vitamin D on MS disease activity and progression is unclear. This study looked at the levels of vitamin D in the blood of people with clinically isolated syndrome (CIS), the first episode of neurological symptoms which may be an early indication of multiple sclerosis

Authors Ascherio A, et al Title Vitamin D as an early predictor of multiple sclerosis activity and progression Journal JAMA Neurology 2014 Jan 20 [ePub ahead of print] >> Read the abstract:

How this research was carried out Researchers analysed data from an earlier study of interferon beta 1b (Betaferon) in people with CIS. 465 participants had their blood vitamin D levels measured at least once during the first two years of the study. They were followed for up to five years with both clinical assessments and MRI scans.

What was found? The study found that those with higher levels of vitamin D in the blood in the first 12 months had a 57 per cent lower relapse rate and a 25 per cent lower increase in active MS lesions seen on an MRI scan. This group also had lower disability as measured by the EDSS scale and a slower yearly loss of brain volume over the whole five years of the study. All participants were also taking interferon beta 1b.

What does it mean? This study adds to the research that has found an association between vitamin D levels and MS activity. However, a number of questions remain.

What else needs to be done? This was an observational study which measured participants’ natural vitamin D levels. People weren’t treated with vitamin D nor given supplements, so the study doesn’t show whether increasing vitamin D levels reduced disease activity. The study also doesn’t indicate whether the level of vitamin D is the cause of disease activity or a consequence of it. Low vitamin D levels have also been associated with disease activity in other conditions such as diabetes, colorectal cancer and cardiovascular illnesses, yet studies of supplements to raise vitamin levels have not produced improvements in health.

Open Door February 2014

How much vitamin D should you take? There is no officially published suggested level for vitamin D supplements in MS. The recommended daily intake in the UK (400IU) is based on reducing the risk of rickets and is widely considered to be too low. In August 2012, the European Food Safety Authority (EFSA) reviewed research evidence and increased the Tolerable Upper Intake Levels to 4000IU. This is the levels that the EFSA felt can be taken daily without causing harm and wasn’t based on any improvement in health. However, some authors feel this is also too low. There are several trials currently underway to test whether taking supplements to increase vitamin D levels improves outcomes for To read our factsheet people with MS. We’ll on vitamin D visit report on the results in future issues of Open or order on p23 Door.

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Research update MS AND EXERCISE

Fighting fit? Short bursts of moderate exercise can reduce fatigue and improve quality of life for people with MS according to recently published research Authors Carter A, et al Title Pragmatic intervention for increasing self-directed exercise behaviour and improving important health outcomes in people with multiple sclerosis: a randomised controlled trial Journal Multiple Sclerosis Journal 2014 Jan 13. [Epub ahead of print] >> Read the abstract:

How this study was carried out The study involved 120 people whose MS had been stable for at least a month. Disability ranged from minimal (EDSS 1.0) to those who could walk at least 10m with or without walking aids such as sticks or crutches (EDSS 6.5). Participants were physically able to exercise three times a week and were not already following an exercise regime. Half the group followed an exercise programme for 12 weeks while the other half received standard NHS care for MS and acted as a control group. The exercise programme involved three sessions a week, in a gym and at home. Each session typically involved five repetitions of three minutes exercise with two minutes rest between each activity. Exercises were tailored to fit each person’s capability and could include treadmill walking, wall press ups, step exercises, knee extensions, balance exercises, work with an exercise ball and stretching exercises. Over time, participants were encouraged to do longer sessions (eg four


minute bouts) or to take shorter rests. Participants were also encouraged to expore other opportunities to exercise in the local community.

What was found The exercise group reported that they exercised more, had less fatigue and that their quality of life was improved after three months. After nine months, improvements in emotional wellbeing, social function and overall quality of life were maintained although improvements in fatigue were not.

What does it mean? The authors conclude that this practical approach to encouraging people to exercise worked well. It improved the level of exercise undertaken, decreased fatigue and lead to a long lasting improvement in various aspects of quality of life. It allowed the physiotherapist to tailor the programme to the person’s capabilities and allowed the person to choose the type of home-based exercise that they preferred.

Stay active! Many studies have shown that regular moderate exercise is good for people with MS. There is no right or wrong exercise, though the nature of MS may mean that you might have to be more aware of what you can achieve. As recovery time can be longer, be prepared to stop before your body tells you that you’ve reached your limit. If you have concerns about trying new activities, talk to your MS nurse, physiotherapist or GP beforehand. Exercise can be energetic or something more relaxed. The Staying Active section of our website has suggestions from angling to yoga as well as information on exercising with MS – see The Exercises for people with MS pages include a range of routines specifically designed by a physiotherapist. Some of these exercises are illustrated by clips from our free Move it for MS DVD, which can be ordered from p23 – see If you are concerned about fatigue, our book, Living with fatigue, has tips on managing fatigue and maximising energy. See, or order on p23.

Open Door February 2014 Facebook: Twitter: @mstrust

MS S U P P O R T OV E R 2 1 Y E AR S

“A positive approach to multiple sclerosis” ... that was the headline on the very first issue of our newsletter Open Door. As the MS Trust turns 21 we’re taking this opportunity to look back at some of the advances in MS support and care since we were founded in 1993. Below Simon, who joined our information team in 2000, reports on how our service has developed in response to changing needs over the years. On pages 14 and 15 Jill Lovell and Nicki Ward-Abel look at what’s changed for people with MS and MS health professionals WHEN THE MS Trust was set up (initially as the MS Research Trust) in 1993, information was sparse. People were frequently told “You’ve got MS, learn to live with it”. What did exist was often too simplistic or too technical and more likely to frighten than to inform. Chris Jones and Jill Holt, the two founders of the Trust had experienced the negative effects of poor information and found this wholly inadequate. One of the first projects of the new charity was an information pack to provide balanced, realistic

answers to the questions people had and to raise awareness of what was available to help people manage their symptoms and live their lives with MS. The response was very positive. Requests for the pack quickly moved to requests for information about issues that it didn’t cover and the need for a dedicated information service became clear. In 1997 the MS Trust appointed its first information officer. Originally her role was mainly to support health professionals, particularly the

first of the MS nurses In 1993 who were starting to be information appointed around the was sparse. People country. However, were often told: calls from people “You’ve got MS, with MS quickly grew learn to live with and the team began it”. to expand. As this issue of Open Door goes out, we are welcoming our latest recruits who take the size of the Information Team to seven.

Change and evolution The number of calls we receive has grown greatly. In 1998 there were 288, with less than half

21 years of the MS Trust: selected highlights In 1993 there was very little accessible MS information, no available disease modifying treatments and only three MS nurses in the UK. Over the next few pages we look back at some of the key changes of the last 21 years. First three MS specialist nurses established in the UK

1993 The MS Trust (initially called the MS Research Trust) is founded by Chris Jones and Jill Holt

Interferon beta 1a licensed in the UK


50 MS specialist nurses in the UK




First publication: the MS Information Pack is sent to every neurologist in the UK

We help set up the MS Nurse Forum, a national network of MS specialists

The MS Trust website goes live

We fund the first research into the benefits of phsyiotheraphy for people with MS


First annual conference for MS health professionals First newsletters for people with MS and MS nurses


MS support over 21 years

In the run-up to MS Awareness Week (28 April–4 May) we’ll be talking to more people affected by MS about what they think are the big challenges of the next 21 years. To read more visit

(continued from previous page)

from people affected by MS. In 2013 we received 2,714, with more than 80 per cent coming from people with MS or their family or friends. The majority of our enquiries have always been by telephone but other methods reflect changes in the way people communicate. In 2001, almost one in five of our questions came by letter. By 2013 this had fallen to fewer than one in a hundred. Initially post was replaced by email but in the last few years we have seen a rise in questions generated by our Facebook page. The variety of questions reflects the wide range of issues that can affect someone living with MS – whether it’s from someone newly diagnosed and unsure where to turn next, or someone asking about treatments to manage their symptoms, to something more unusual such as whether having a tattoo might affect MS. Even when a topic appears several times, the response is rarely exactly the same as we try to

match information to the caller’s particular needs and situation. The nature of enquiries has changed as people have had more access to general information. In 1997, when the MS Trust website first went live, opportunities to use the internet were more limited and the range of information more restricted. In 2014, online access is much more widespread – both on computers and increasingly on mobile devices. Often enquirers are calling to go into more specific areas less well covered online. 21 years on, the need for reliable, evidence-based information remains as strong as ever. People increasingly expect information to be available to help them make informed decisions about how they live their lives with MS. Whether through our website, our range of publications or through the personal enquiry service, the MS Trust continues to offer help in finding the information people need to live their lives with MS.

80 MS specialist nurses in the UK

1999 We begin our campaign to help people with MS get access to the new disease modifying therapies beta interfon and glatimer acetate




New books: MS: what does it mean for me? Tips for living with MS

We publish the first research on the role of MS nurses and their contribution to MS care

We run the first foundation course for MS nurses

The MS Trust team in 1999 (right) and today (below). Still a small charity, we’ve grown in response to the demand for our information and services

170 MS specialist nurses in the UK

Start of the Risk-sharing Scheme giving access to beta interferon and glatiramer acetate on the NHS

NICE publishes guideline on NHS care for people with MS



We help set up the UK MS Specialist Nurse Association (UKMSSNA)

We help set up the Therapists in MS network (TIMS)

New book: My dad’s got MS

New publication: Competencies for MS specialist nurses

First factsheet on disease modifying drug therapy

MS support over 21 years Demand for accurate, reliable MS information continues to grow

Who do we help?

Since 1998 enquiries have increased tenfold

When it was set up, the MS Trust enquiry service was aimed primarily at health professionals. Today people affected by MS make up over 80 per cent of people who contact us with questions.



Other 14%

2500 Health professionals 33%

Students 11%






People affected by MS 42%

500 288




Students 1%

876 1279 1540 1521 1616 1698 1786 1698 1954 2436 2712 2731

Other 6%

Health professionals 9%

1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013

What do people want to know? Over the last three years these were the most common types of question received by our information team People affected by MS 84%

Do I have MS?

How do I find an MS nurse?

Can I get any financial help?

What benefits am I entitled to?

Can I get help with a problem at work?

What can I do about MS pain?

Can you tell me more about Fampridine?

I’ve just been diagnosed. What now?

Can you tell me more about Fingolimod?

Do you have a question about MS? • Call our freephone enquiry service on i 0800 032 3839 (01462 476700 if you’re calling from a mobile) • Email • Write to us: MS Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET

200 MS specialist nurses in the UK National service framework for long-term conditions published

Natalizumab (Tysabri) licensed in the UK





New books: MS explained and Exercises for people with MS

New DVD: MS Together

New books: Living with fatigue, The young person’s guide to MS

New books: At work with MS Sexuality and MS: a guide for women

With the Royal College of Physicians we commission the first of three surveys into the state of MS services

New DVD: Move it for MS with Mr Motivator

New factsheet: MS and diet

2008 New book: Falls: managing the ups and downs of MS


MS support over 21 years

The power of personal contact Jill Lovell has lived with MS for over 30 years and has been involved in the work of the MS Trust since the early days. Here she looks back on some of the big changes of the last 21 years I FIRST HAD symptoms in the early 1980s and it wasn’t until four or five years later that I was given a presumptive diagnosis, which they did in those days. The proper diagnosis didn’t come probably until 1995. They would say “you have symptoms that may or may not be MS, go away and see how you get on”. And I did quite well I suppose. I’ve lived with symptoms for 31 years now. There wasn’t any MS information I knew of at the time. I was a nurse, which might have been a bad thing. If you’re a nurse you only see people when they’re in hospital during quite severe episodes. In 1993, we moved from Leicestershire down to the south-east. That’s when I remember hearing MS Trust co-founder Chris Jones on Woman’s Hour. It must have been about the early days of the MS Trust, just saying “we’re here and we have information”. I remember I was at a bit of a low ebb – I had moved away from my friends and maybe I was in place where I just wanted to

really positive addition to the professional team. I recently transferred my neurological care to a local hospital and it feels as if there are lots of positive things happening for all neurological illnesses. I think that because the MS Trust is a small organisation the contact feels personal. I’ve contributed to books and leaflets and Open Door. Chris invited me to give a talk to staff at the Dept of Work and Pensions about what it was like to live with MS. I I really enjoyed the journey by train to London with my personal assistant, to share the advantages of the independent payments scheme and how benefits contribute to a good quality of life in challenging circumstances! When I read articles now by people living with MS it’s all very encouraging and uplifting. In the next 21 years we might have a cure. It’s probably too late for many of us which is why it’s so important not to lose sight of the fact that people do get advanced MS and need a lot more practical support.

Functional electrical stimulation approved as a treatment for MS

Sativex licensed for treating MS spasticity

Fingolimod (Gilenya) licensed in the UK




New books: The kids’ guide to MS Are you sitting comfortably?

New books: Talking with your kids about MS MS and Me

New publication: Competencies for MS specialist services


pick up the phone. And Chris Jones actually answered! I’ve been looking at all the information the MS Trust produces – there is so much there for people with MS now! The problem is you need to be able to limit yourself to what’s relevant to you in the moment of your MS. I should have liked the info about talking to your children about MS, how to deal with it in the workplace, as well as the wonderful information leaflets about managing symptoms and the disease modifying drugs. Open Door is a brilliant way of keeping in touch with what’s going on. You discover that all sorts of people are living with MS. I feel that the MS Trust is really grounded. When you speak to the information team you feel that you’ve had a thought-through response. When there was talk of CCSVI there was the worry that if I didn’t go for it would I be letting myself down? So it’s good to have the balanced approach of the MS Trust’s reviews. MS nurses have been a

New online resource on MS and cognition: Staying smart

New freephone number for the MS Trust Information Service

New books: Primary progressive MS exposed, Sex and MS guides for men and women New publication: Defining the value of MS specialist nurses New online resource: At work with MS

MS support over 21 years

It used to be “diagnose and adios” Nicki Ward-Abel has been an MS nurse since 1997. Here she remembers how the MS Trust helped transform MS nurse training for the benefit of everyone affected by MS

Nicki Ward-Abel is lecturer/practitioner in multiple sclerosis at Birmingham City University. She has been involved with the MS Trust in many ways over the years, including helping set up the MS nurse development module, co-writing our book Sexuality and MS: a guide for women, and raising funds by trekking in Peru.

I BECAME AN MS nurse in 1997. Before this I was a sister on a neurology ward but I’d always wanted a specialist nurse post. Initially I helped people use the new disease modifying drugs although couldn’t see many people because of insufficient time and traveling took up so much of it. People with MS have always come into outpatients, but they didn’t have any nursing input until after the mid-90s. If they weren’t suitable for any sort of medication, they often didn’t receive any follow up from the neurologists who felt there was nothing they could do for them. They used to call it ‘diagnose and adios’ – you were diagnosed in hospital and told to come back when there were problems. But by the time the person came back they had already developed substantial difficulties. We hadn’t been able to stop some of those developing because no one knew these people were out there. So I suppose the type of care people got was very haphazard. No one could clearly

articulate the MS services in those days because there weren’t any. Nothing organised, nothing concentrated on the psychological side and certainly nothing for the carers and family members. And they certainly didn’t have access to the treatments, information and resources we have now. People often felt lost and abandoned. I first came in contact with the MS Trust in 1997/98. A colleague had been to the very first MS Trust conference and spoke to me about it asking if I was interested in coming to the next one. I felt extremely honoured when I got a place and I went along. And, apart from the year I went to Peru to fundraise for the MS Trust, I’ve been to every one since! It was the MS Trust that first stepped in and began to concentrate on MS Nurse education; they had the vision before anyone else that more educated nurses resulted in more educated patients. First came the national conference and individual MS related study days, they then designed the innovative

programme of a week’s education offered to all new MS specialist nurses (the development module). It’s brilliant that it’s residential so everybody who attends can get focused for that time. When I started in post there was nothing like it. One day you were a ward sister, the next day you were an MS specialist nurse and there was nothing in between. What the MS Trust has achieved is massive. People with MS can’t fail to profit from this. When I started you had to learn on the job, any way you could. There was nothing structured about it. Now you’re learning from the best – that’s crucial. The benefits of what the MS Trust provide is immeasurable. Of course most patients are better looked after than ever and can be confident in knowing that they’re being educated and treated by nurses and therapists who know what they’re talking about. In the old days people did the best they could – but that’s not good enough. People with MS deserve a lot more than that.

Around 240 MS specialist nurses in the UK




We begin GEMSS, a pilot project to generate evidence for the value of MS specialist nurses

We commission new research into secondary progressive MS

As we head into 2014 we’re working on a new book, Secondary progressive MS, and a new range of information for people who’s just been diagnosed with MS.

We fund a pioneering stem cell research project

New books: Managing your bladder and Managing your bowels New publication: Defining the value of allied health professionals

We’re also going to be hosting the European Rehabilition in MS (RIMS) conference in Brighton in June. Look out for more details about all our activities in future issues of Open Door!



Helping kids understand MS Getting a handle on MS can be hard enough when you live with it yourself. But it can often be just as tricky for children and young people to understand why their mum or dad is too tired to play or why they might have to help out more at home. The young person’s guide to MS is one of our most popular publications and aims to give some answers. It was inspired by a series of workshops organised by Kerry Mutch to help young people learn more about the condition and to explore their feelings about living with MS in their family. Below we hear from one girl who benefited from these sessions and on page 17 Alison Thomson introduces her new website which aims to make these kind of sessions available to everyone affected by MS, online. OK, I DID need to be persuaded by mum to go to a study day about MS. Most of the time I pretend everything is OK and I’m not worried, although I get a bit mad when I can’t go out because I have to tidy up or something. Sometimes, when I’m on my own, I worry if mum’s going to get worse or die. But it wasn’t hard to choose between missing drama at school and having a day out. When I arrived I was very nervous as I didn’t know what to expect and I didn’t know anybody. I needn’t have worried. There were about 20 others and everyone was very friendly. First we went into three teams and played a game that showed us how nerves pass messages and how different things can go wrong. The next bit was the most fun. In our teams we went to three different sessions on memory and word finding, bladder and visual problems and sensory and motor problems. We did different activities and we learned how they related to problems in MS. My favourite was the three-legged course where we learned how hard it can be to walk if you have MS. Me and my partner crashed into a wall! Then we had to open a packet of sweets with one hand. This was also tricky but we got to eat the sweets. The hardest exercise was trying to


It was great to meet other children like me. I learned a lot and am not as frightened of MS as I was.

remember all the details of a story we were told. This was to show how MS can affect your memory. We were given some hints to help make it easier, like writing things down. After lunch we stayed in smaller groups and were told a story about a girl called Emma whose dad has MS. This gave us a chance to think about both Emma and her dad’s feelings. I don’t often think about how my mum feels. I now realise that she may also feel guilty when I can’t go out. Finally, we had a question and answer session. I found out that I probably won’t get MS and my mum won’t die of her MS. There’s no cure for MS, so she will always have it, but there are some treatments that may be able to help her. Then it was home time. I’m glad I came to the MS in the family day. It was great to meet other To see our children like me. I full range of learned a lot and I’m publications for not as frightened of parents, children and MS as I was. young people visit or order on p23

Open Door February 2014 Facebook: Twitter: @mstrust

Ex pl ai n ing MS

Digesting Science ( is a new website which helps children understand more about their parent’s MS. It was produced by interaction designer Alison Thomson as part of her work with the Neuroimmunology Group at Queen Mary, University of London. Here she introduces some of the features of the site THE IDEA FOR Digesting Science came from my masters project – using food to make difficult ideas a bit smaller so you can ‘get’ them. This was a public engagement project, but the MS team I worked with saw a need in the clinic: we weren’t addressing the children of people with MS. So the idea for Digesting Science was twofold: helping parents let their children know what MS is. But also helping the children themselves understand what their own chances of developing MS are. We developed a Saturday morning course where children of people with MS could come along with their parents to our MS centre. They met the scientists and got to go around and do all the the different activities that are featured in videos on the website. We were very aware that we’re lucky to have a research team attached to the MS centre where we are in London, so we thought we should develop a website so people across the country can do these activities at home. To read more about Alison’s work visit

Open Door February 2014

MS is a disease of the central nervous system. (brain, spinal cord and eyes) that interferes with the brain’s ability to control your body. The central nervous system is made up of lots of nerves that have different functions. Each nerve is coated in myelin. Damage to this myelin is the cause of MS symptoms.



The Digesting Science website is designed so that you can navigate around the body, focusing on different symptoms and different bits of information as you go. Starting at the finger tips you can voyage through the nervous system to the brain, they eyes, the legs and the bladder. The site features a number of videos (see left explaining bladder issues), presented by actual scientists working at Queen Mary’s, introducing some of the aspects MS in a accessible and engaging fashion. There are also downloads to help you recreate some of the experiments at home!

Freephone 0800 032 3839



Lovely bones People with MS have a greater risk of developing thinning of the bones (osteoporosis). As there are often no symptoms, it may only be discovered when you break a bone in a minor accident. MS nurses Pauline Shaw and Debbie Quinn put together these tips for keeping your skeleton healthy and strong.


Take regular exercise

Regular, moderate weight-bearing or resistance (for example using weight equipment in a gym) exercise not only keeps bones strong but may also improve bone strength. Exercise that focuses on balance and coordination will improve core stability and reduce the risk of falls. If you can, it’s good to get a variety of exercise. Walking, dancing, gardening and even housework are all good ways of exercising. Tai chi, Pilates and yoga are gentle, low-impact forms of physical activity that can improve flexibility, strength and coordination. Joining a local keep-fit class can make it more fun and help with motivation. If you have difficulty exercising, a physiotherapist can give advice on suitable exercises and equipment to improve walking and balance. For more advice see the book Exercise and Osteoperosis available from the National Osteoperosis Society at



Eat a healthy, calcium-rich diet

Eating a balanced diet and maintaining a healthy weight is good for your general health but eating calcium-rich foods in particular will help maintain your bone density. Calcium is essential to keeping bones and teeth strong as well ensuring your muscles and nerves work well. The daily recommended amount of calcium is 700 mg for adults. Most people should be able to get this from their diet. Good sources of calcium include: • low-fat milk, cheese, yoghurt and other dairy foods • green leafy vegetables, such as broccoli, cabbage and kale (but not spinach) • soya beans • tofu • soya drinks with added calcium • nuts and seeds • bread and anything made with fortified flour • fish where you eat the bones, such as sardines and pilchards or canned salmon • tap water (particularly in hard water areas)

P racti ca l tip s


Get lots of sunshine and vitamin D

Vitamin D is vital to help the body absorb calcium. We get most of our vitamin D from sunlight on our skin. Most people can get enought vitamin D by exposing their face and arms to sunlight for 5-15 minutes daily during the summer months. However, if you are out in the sun take care to cover up or protect your skin with sunscreen before you turn red or get burnt. Your body stores enough vitamin D to keep your bones healthy through the darker winter months. Small amounts of vitamin D are found in some foods including oily fish, such as salmon and sardines, and cod liver oil. Lower amounts are found in eggs, fortified fat spreads and breakfast cereals and in powdered milk. To maintain bone health, the Department of Health recommends a daily 400 IU (10 micrograms) vitamin D supplement for: • pregnant and breastfeeding women • people aged 65 and over • people with low sun exposure such as those who stay indoors a lot, or cover up when outside


Stop smoking

Smoking is associated with an increased risk of osteoporosis. People with MS who are at risk of osteoporosis are encouraged to cut down or stop smoking completely. Your GP can give you information on local stop-smoking services.


Cut down on your alcohol

A high alcohol intake reduces your body’s ability to produce new bone material and can increase risks of falls.


Avoid falls

You can reduce the risk of falling by checking your home and work environment for hazards you may trip over, such as trailing wires. You can find more suggestions in the MS Trust book Falls: managing the ups and downs of MS – see below.

What else might make your bones weaker? Family history If you have a family history of osteoporosis or a parental history of hip fracture, you may be at greater risk of developing osteoporosis, so make sure your GP and other health professionals are aware of this.

MS symptoms Several of the more common symptoms of MS make you more likely to fall, including fatigue, visual problems, mobility and balance, bladder and bowel problems, concentration and forgetfulness. An occupational therapist or MS nurse can help you manage these symptoms.

Medication Some drugs such as steroids, anti-epileptic drugs (often used in MS to treat pain) and certain antidepressant drugs can affect your bones and increase the risk of osteoporosis. Talk to your neurologist, MS specialist nurse or GP and do not stop any medications until advice has been given.

Open Door February 2014

Concerned about your bone health? Talk about your concerns and any risk factors with your GP, MS nurse or neurologist and ask for referral to a bone specialist who can carry out further tests and give advice on any treatments that may be necessary. We also publish a couple of books that might be of interest: Falls: managing the ups and downs of MS includes tips and suggestions for avoiding falls. Living with fatigue looks at ways you can manage your energy levels so that you can avoid falling when tired.

To order either of these see p23 or visit

Freephone 0800 032 3839



Going boldly through the blue!

When Liz Hilland from Country Durham was told she had multiple sclerosis back in 1999, she knew very little about it and feared it was an end to the life she knew. She has since become involved in raising funds and awareness to help others understand more about MS and show that life goes on after diagnosis

Photo © Liam Smith

When Liz Hilland from Country Durham found out she had multiple sclerosis in 1999 she knew very little about it and feared it was an end to the life she knew. Since then she become involved in raising funds and awareness to help others understand more about MS and show that life goes on after diagnosis. Last year she toook part in a zip slide from the Tyne Bridge as part of our Be Bold in Blue campaign WHEN I WAS first told I had MS I’d never heard anything about it. I thought that was it. I had a one-year-old and a three-year-old and I thought my life was over. I wanted to fundraise to raise awareness that you can still be positive. I didn’t want people in the same situation as me thinking it was the end – it’s not. The first thing I did was a collection in a supermarket dressed as Santa, shaking a bucket. Various people were coming up to me, tearful and completely taken aback that I had MS too. I work full-time in the entertainment department at Sainsbury’s and they have been really good since my diagnosis. Last MS Awareness Week I got everyone in my department to wear MS Trust T-shirts as part of the Be Bold in Blue campaign. We had wristbands and pin badges on the counters with collection boxes. An MS specialist nurse came up to me in the store and said “I’m so pleased about what you’re doing”. I had been trying to get in touch with an MS nurse so I took her number and I’m seeing her now!


The man said “Don’t look over the bridge,” – so of course I looked over! I kept thinking “sponsor money, sponsor money, sponsor money…”

Last year I took part in a zip slide off the Tyne Bridge to raise funds for the MS Trust. I don’t know why I did it – it was so high! The man said “Don’t look over the bridge,” so of course I looked over. I kept thinking “sponsor money, sponsor money, sponsor money…” I screamed from the second I jumped off until they told me I’d finished! It was a really good day, people loved it. Sometimes I push myself too hard so this year I’m going to take it a bit easier and do nice things like cake sales and helping out at the MS Trust’s zip slide event. Both my daughters are doing it and I’m really looking forward to it. Some of my friends and colleagues are taking part and one of them has already raised £400.

Inspired by Liz’s exploits? See the next page for details of how you can go large with this year’s Be Bold in Blue campaign

Open Door February 2014 Facebook: Twitter: @mstrust

Get i nvolve d

Get involved! There are loads of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit London to Paris cycle ride Join our team for this classic cycle challenge connecting two stylish capital cities. Various dates available between May and September.

For this year’s MS Awareness Week, Be Bold in Blue goes large! This year’s MS Awareness Week takes place from 28 April to 4 May and we hope that lots of you will get involved. MS Awareness Week gives us all a chance to help others understand what it means to live with MS. Any activities you can arrange locally or online will help us to reach out to more people who could benefit from our support. Once again we’re running our Be Bold in Blue fundraising campaign and we can provide you with ideas and materials to support you in whatever you choose to do. This year we’re also introducing Be Bold in Blue Goes Large which gives you a chance to really think big and plan a fundraising and awareness event on a larger scale. The money you raise will help us continue to provide the most accurate and up-to-date information about MS through our website, publications and enquiry service. For the MS Trust’s own Be Bold in Blue Goes Large, we’re organising a sponsored zip slide in Newcastle across the River Tyne on Saturday 10 May. Visit zipslide or get in touch to find out how you can take part. Keep an eye on our MS Awareness Week website for all the latest updates and information:

Open Door February 2014

DIFC Super Hero Run Fancy dress 5K or 10K fun run in London’s Regent’s Park on 18 May. Join our team of super heroes for this accessible family event. British 10K London Run Wear your MS Trust T-shirt with pride and run 10K through the streets of London alongside 25,000 others on 13 July. Prudential RideLondon-Surrey 100 Cycle 100 miles along closed roads on 10 August, following a route from the London 2012 Olympics. Bupa Great North Run Run the famous 13.1 miles from Newcastle to the coast at South Shields on 7 September, in the world’s biggest half marathon.

To find out more about supporting the work of the MS Trust call 01462 476707 or visit

Freephone 0800 032 3839



minutes with

MS Trust fundraiser

Anne Thompson

Over the last 10 years Anne Thompson, whose son has MS, has been one of the MS Trust’s most dedicated fundraisers. All in all she’s raised almost £15,000 – that’s enough to pay for the writing and printing of our new guides to managing MS bowel and bladder problems. It’s only thanks to the tireless work of people like Anne that we are able to make a difference for everyone affected by MS. We are incredibly grateful for the continued support of Anne and everybody who has fundraised or donated to the MS Trust. Thank you all very much. How did you first get in touch with the MS Trust? You know, I can’t remember! I certainly know it’s the best thing I ever did. Over the years they have always been there to answer any questions we had, and have supported us in many ways. Their advice has always been brilliant, and has saved us some heartache and £14,000. You see many years ago there were clinics abroad who were offering miraculous cures using stem cells. There was a lot of publicity in the press about these clinics and lots of convincing stuff on the internet backing these clinics as the new cure for MS. My son, who was in his early twenties at the time, was all ready after reading all this hype to borrow £14,000 and fly to Holland when I stopped him and made urgent phone calls to the MS Trust to ask their opinion. They soon convinced us that these findings were untested and unlicenced. Some scams were soon uncovered and in some cases the clinics were closed down.

What made you first start fundraising? I think I started over 10 years ago. My inspiration for starting


to help was obviously seeing the benefits the MS Trust brought to my son’s life and my family. Over the years I’ve organised quite a few events. We’ve had a big quiz night, my husband did a Scottish Islands open water swim, last year we had a vintage afternoon tea party, and my son has done 10,000 foot tandem parachute jump! I was lucky enough to be invited by the MS Trust to listen to an address given by Professor Neil Scolding at the House of Lords last October. He explained how important our fundraising was to his team’s research into stem cells, and their potential use in the treatment of MS. So apart from the important information the MS Trust gives us, it is encouraging to see that some of the funds are used on research, and that we are indeed a valued part in the fight against MS.

What do you think has been the most important development in MS care in the last 21 years? I would have to say MS nurses – they are our heroes! My son, who has secondary progressive MS, recently became very immobilised and in a few days lost the use of his left hand and arm.

I spoke to an MS nurse on the phone who advised me to immediately get a water sample to his doctor, as my son may have an infection. I did and within five minutes of going to the doctors was told he indeed had an infection, which could be triggering all his new symptoms. Three days later his feeling had returned to his left arm and his grip was getting better by the day. I will always believe that the MS specialist nurse’s advice was the best thing that happened, as it boosted my son to a quick and happy recovery.

How have you seen the MS Trust develop over the years? The MS Trust has evolved to become a very informative source for everyone affected by MS. They have the most comprehensive collection of leaflets and books on all aspects of MS and its problems, from the newly diagnosed, to people who have been living with MS for a while. It is so important when you are told you have MS to have somewhere to find out more. You To find out how you can rely on the MS could get involved and Trust to give you the make a difference visit correct information and advice.

Open Door February 2014 Facebook: Twitter: @mstrust

Information from the MS Trust For a full list of resources or to read online visit

Books MS and me: a self-management guide

Talking with your kids about MS

The young person’s

guide to MS

The kids’ guide to


MS explained

Disease modifying drug therapy: new edition

Sex & MS: men

Sexuality & MS: women

Managing your bowels

Managing your bladder


Living with fatigue

Alemtuzumab (Lemtrada)

Teriflunomide (Aubagio)

BG12 (Tecfidera)



Vitamin D (revised)

Pregnancy & parenthood


Clinically isolated syndrome (CIS)



Stem cells



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

MS Trust emails

MS Trust supporter news

MS Trust weekly research update

MS Trust weekly news alert

Delivery details Title


Job title (if health professional)

Address Postcode Email Data Protection Act: MS Trust and our trading company value your support and promise to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998). We will not disclose or share personal information supplied by you, with any third party organisations without your consent. We would like to keep you informed about the vital work we do; if you do not want to receive this information please let us know.

All items are free but we are only able to offer free, practical, reliable information thanks to the donations of people like you. With your help we can ensure no one has to deal with MS alone. I’d like to make a donation of £5



Other: Issue No.

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If you would prefer, we can take your donation over the phone on 01462 476700 or online at I would like details about setting up a regular donation

I would like details about leaving a gift in my will

Make your gift worth more with Gift Aid

Tick the gift aid box and for every £1 you donate, we will receive an extra 25p from HMRC at no extra cost to you! I am a UK taxpayer and I wish the MS Trust to treat this donation, and all future donations until I notify you otherwise, as Gift Aid donations. Signed


I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give. Please notify us if you change your name or address.

Return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET Registered charity no. 1088353

MS Awareness Week 2014 28 April–4 May

Knowledge is powerful MS Awareness Week 2014 runs from 28 April to 4 May. This year let’s help even more people affected by MS get the benefit of free, practical, reliable information. Because with the right info at the right time, we can all make the choices that help us live life to the full.

How will you get involved?

Tell the world about your super team of MS specialist health workers

Be Bold in Blue and raise funds to support the production and delivery of our free information

Take the MS Trust 21 challenge and spread the word to 21 people affected by MS

To find out more visit or call 01462 476700 #msweek

February 2014 Open Door  
February 2014 Open Door  

The February issue of the MS Trust's quarterly newsletter looks back on 21 years of progress in MS care and support and reports on all the l...