MSM 105

The Osbourne effectWhen celebrities talk about MS

Long and winding roadLiving with progressive MS

Does faith matter?An atheist debates with a minister

105 September/October 2012

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UP FRONTMS Society survey of your health and social care needs, the Paralympics, and more

NEWSStephanie Millward’s Paralympic medal haul, new NHS neurology network, and more

LETTERSThe joy of cycling, the reality of progressive MS ‘is ignored’, and more

THE OSBOURNE EFFECTWhat are the consequences when celebrities ‘reveal’ that they have MS?

THE ATHEIST AND THE MINISTERFor some people, religious faith helps them cope with life with MS; for others, it is irrelevant. We hear from an atheist and a Christian minister

PROGRESSIVE MSPeople with progressive MS often feel like the ‘forgotten ones’. We hear from two people who know what it’s like to live with progressive MS and we talk to a neurologist about the possibility of future treatments

STRESS AND ANXIETYStress, anxiety and depression are commonly experienced by people with MS. We outline some tips for coping

YOUR SOCIETYThe outcome of the Society’s AGM, welfare reform campaigns, Christmas fundraising, and more

THE COST OF NEW DRUG TREATMENTSWhat happens when a licensed treatment for MS isn’t available on the NHS? We talk to two people about their experience of obtaining and using Fampyra

NON-DRUG CLINICAL TRIALSHow are non-drug treatments for MS tested?

RESEARCH NEWSFirst oral treatment for MS now available on the NHS, identifying research priorities and more

www.mssociety.org.uk MS Matters 105 01

CONTENTS

TALK ABOUT MS

MS Helpline0808 800 8000(Mon to Fri, 9am–9pm; Sat, 10am–1pm)[email protected]

MS Society website forumswww.mssociety.org.uk/forum

Facebook groupwww.facebook.com/MSSociety

Twitterwww.twitter.com/mssocietyuk C

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RESEARCH MATTERS – THE PROGRESSION ISSUE The latest issue of Research Matters (Autumn 2012), the MS Society’s research news magazine, is now available. It focuses on progressive MS and looks at the challenges involved in studying and understanding the condition. There are details of research that is underway around the world and of the MS Society’s major investments in projects that are tackling progressive MS. Most of you will have received a copy of Research Matters with this issue of MS Matters. If you haven’t received a copy but would like one, you can download it from www.mssociety.org.uk/research or call 020 8438 0759 for a copy.

From Simon GillespieChief Executive of the MS Society

Early next month we will be launching one of our largest-ever surveys to help us understand how well the UK is meeting the health and social care needs of people with MS. We will be posting a short questionnaire to all of our members who are over 18 and have told us that they have MS – that’s around 24,000 people – to ask them if they are able to access the care and support that they need. Everyone’s responses matter and will be used to shape the Society’s work for years to come. So when you receive the questionnaire, please take a few minutes to share your views and send it back to us. There is more about this on page 34. Congratulations to Stephanie Millward, our cover star of the last edition of MS Matters, who has done herself and Team GB proud with her amazing haul of medals – four silvers and a bronze. With 18,000 people at the Aquatics Centre cheering her on, it was a boost for people with MS everywhere. Poor old George Osborne, though, getting booed by 80,000 people in the Olympic stadium as he handed out the medals. The Paralympic games also had a controversial sponsor in Atos, the much-criticised company that carries out the government’s work capability assessments for Employment and Support Allowance. It’s worth noting that, according to the government’s work capability tests and Atos-run assessments, half the people competing in the Games might not be considered disabled. All that aside, it’s obvious that the Paralympics have done an incredible job of showcasing disability sport on a world stage. They are a brilliant backdrop to our campaigns to get active and fi ght back against MS. We got an opportunity to thank our own stars of 2012 with the MS Society Awards, which took place on 25 September. Special guest presenters led a glitzy affair at London’s Royal Garden hotel. If you didn’t nominate an MS star this year, there’s always 2013! There will be a full report in the next issue of MS Matters.


UP FRONT

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MS Matters is a Multiple Sclerosis Society publication ISSN 1369-8818

© Multiple Sclerosis Society 2012

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Editorial Board Sue Farrington, Hilary Freeman, Jenna Litchfield, Sarah Mehta, Anita Roberts, Anthony Stone

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Articles signed by the authors represent their views rather than those of the MS Society. Mention or advertisement by the MS Society of products or services is not an endorsement by the MS Society, its officers or staff.

Five Paralympics medals for Stephanie

At the London Paralympic Games, Stephanie Millward, the only athlete with MS in Britain’s team, won medals in fi ve out of the six races in which she competed. Stephanie, who was the cover star of the last issue of MS Matters, won four silver medals – in the 100m backstroke, 400m freestyle, 200m individual medley and the 4x100m medley relay – and one bronze – in the 4x100m freestyle relay. She came fi fth in the 100m butterfl y. Paralympic swimmers are graded from S1, for the most disabled, to S10, for the least disabled. Stephanie competed in the S9 class.

Neurology network to improve NHS services

The NHS is to set up a new Strategic Clinical Network (SCN) in England for people with ‘mental health, dementia and neurological conditions’. The SCNs are part of the reorganisation of the health and social care system, and are designed to help identify where there is variation in care and where health services need to be improved. This is the fi rst time neurological conditions have been recognised by the NHS as a priority. Clinical networks for cancer, diabetes and other common conditions have existed for some time, and have seen great improvements in services. We will be working with partner organisations who support people with neurological conditions to identify key challenges that need to be addressed. You can tell us about your experiences of using neurological services in this country by completing our online survey at www.surveymonkey.com/s/msstories or by writing to Policy and Campaigns, The MS Society, 372 Edgware Road, London NW2 6ND.

Blue Badge consultation launched

The government has launched a consultation in England on eligibility for a Blue Badge (which allows disabled people certain exemptions from parking restrictions) when the new benefi t, Personal Independence Payment (PIP), replaces Disability Living Allowance (DLA) from next year. Currently, people who receive the higher rate Mobility Component of DLA are automatically eligible for a Blue Badge. Among others considered eligible are those who are assessed as being unable to walk or to walk far without very considerable diffi culty. The government’s preferred option is for Blue Badge eligibility rules to remain very similar to the current system. Importantly, they say would prefer to have a link between eligibility for PIP and eligibility for the Blue Badge. The MS Society strongly supports this approach and is opposed to forcing people to rely on the discretion of their local authority. We are pushing as hard as we can to ensure that the rules are as generous as they can be for people with MS. We want to ensure that everyone who currently qualifi es for a Blue Badge continues to do so and that the assessment asks whether people can walk reliably, repeatedly and safely. We’re also pushing for symptoms like dizziness, disorientation, visual impairment and problems with balance to be properly considered.

You can respond to the consultation at www.dft.gov.uk/consultations. The closing date for comments in 2 October.

04 MS Matters 105 www.mssociety.org.uk

NEWS

All change at the Department of Health

Prime Minister David Cameron’s September reshuffl e of his government has seen the demotion of Andrew Lansley, who, as Health Secretary, was the architect of the coalition’s controversial reorganisation of the NHS in England. Mr Lansley becomes the Leader of the House of Commons and is succeeded at the Department of Health by former Culture Secretary Jeremy Hunt, who got into hot water over his role in News Corporation’s attempted takeover of satellite broadcaster BSkyB. Esther McVeigh has become Minister for Disabled People, replacing Maria Miller, who has been promoted to Culture Secretary and also has responsibility for the Government Equalities Offi ce. Iain Duncan Smith retained his post as Secretary of State for Work and Pensions. Newly appointed Health Ministers Anna Soubry and Norman Lamb have suggested that the law on assisted suicide should be looked at again. Ms Soubry told the Times it was ‘ridiculous and appalling’ that Britons had to ‘go abroad to end their life’. She added that she was against euthanasia but said, ‘you have a right to kill yourself’.


NEWS

Atos awarded new benefi t assessment contract

Atos Healthcare and Capita Business Services Ltd have been awarded contracts worth hundreds of millions of pounds to carry out assessments for the new Personal Independent Payment (PIP) benefi t, which will replace Disability Living Allowance (DLA) from next April. People in Scotland, the North East and North West of England, London and Southern England will be assessed by Atos, while Capita will carry out assessments in Wales and Central England. The contracts for Northern Ireland are still to be confi rmed. Atos, which currently carries out medical assessments of applicants for Employment and Support Allowance (ESA), is a highly controversial choice. In July, the company was the subject of two critical TV documentaries, on BBC1 and Channel 4. And the National Audit Offi ce has criticised Atos’s existing contract with the Department for Work and Pensions, saying that it fails to penalise the company for ‘underperformance’. The MS Society is leading the Disability Benefi ts Consortium (DBC), a coalition of over 50 national charities, representing hundreds of thousands of disabled people, in urging all assessors to learn lessons from the mistakes made in carrying out the Work Capability Assessment for ESA. We’ve called on Atos and Capita to sign up to ten pledges to show their commitment to delivering a process that is as fair as possible under the government’s plans.

The Disability Benefi ts Consortium website is at http://disabilitybenefi tsconsortium.wordpress.com

Note about ordering from advertisers

Following a complaint from a reader, we would like to point out that some companies that advertise in MS Matters may charge you if you return a product you have purchased. Charges usually apply to larger items. Please check before you order.

Newly appointed Health Ministers Anna Soubry and Norman Lamb have suggested that the law on assisted suicide should be looked at again

Nintendo Wii led me to seek help

I was interested in your fi tness article in issue 104 (‘Fit for purpose’), particularly about Nintendo Wii. Prior to being diagnosed with MS, I kept reasonably fi t and loved using my Wii Fit. Gradually, I noticed diffi culties with walking, which I shrugged off. But when my Wii scores started deteriorating, I realised something was wrong. The feedback I was getting, such as ‘your left leg is very weak’ and ‘your balance is terrible’, made me aware of the other unexplained problems I was having and led me to my GP. For me, the Wii is great fun, led me to seek help, ultimately get a diagnosis and now I still use it to keep track of my progress.

Elaine Duffy, Glasgow

The MS Society is funding a study to help develop an exercise programme using the Wii™ that can be done at home. See our website for more details.

A new use for the Blue Badge

The instruction ‘bring appropriate photo ID’, which assumes you have either a driving licence or a passport, may well cause as much of a problem for other readers as it does for me; being neither a driver nor able to go abroad. But, now that the Blue Badge scheme is operated with a national database, including a photograph, would it not be possible to use it as acceptable photo ID? This is something which would be really benefi cial, especially to more severely disabled people, wouldn’t it? If readers think this is a valid idea, perhaps they would take it up with their MP or the Minister for Disabled People.

Ian Cheetham, Bury

The joy of cycling

It was great to see the celebration of staying active with MS (MS Matters 104) and especially Simon Lord’s enthusiastic account of electric-bike cycling. I share his enthusiasm for cycling and also want to convey it to other people. My stand at MS Life was called ‘Cycling Otherwise’ and its objective was to show the variety of ways in which cycling can be possible for those of us with disabilities. I use a handcycle, which is especially good for countryside access, but also for getting around town. I ride a single trike with electric assist and ride as stoker [the rear-seat rider] on a tandem tricycle. As Simon writes, cycling provides a wonderful sense of freedom, independence and achievement. It defi nitely supports physical and psychological well-being.

Katherine Cuthbert, Cheshire

Katherine Cuthbert’s book, ‘Keeping Balance: A psychologist’s experience of chronic illness and disability’, is published by Matador at £7.99. Proceeds are being donated to The Cambridge Centre for Myelin Repair.


LETTERS

Cycling provides a wonderful sense of freedom, independence and achievement

FRE E D O M

Progressive MS is being ignored

If it is any comfort to Christopher Brennan, it was very reassuring for us to learn from reading his letter about his step-daughter Sarah’s condition (We can’t all ‘get active’, MS Matters 104), that there is actually one other family quietly suffering the same agonies and torments as we have over the past fi ve years, watching helplessly as our 45-year-old daughter’s aggressive form of primary progressive MS slowly and insidiously robs her of her life. As with Sarah, she now cannot talk with us and in addition to being catheterised and requiring 24/7 care is also PEG-fed. There is so little mention of this form of MS in MS Matters that those who have it and their relatives and carers could be forgiven for feeling that they have been overlooked completely.

B Cochrane, by email

Please turn to page 12 for our feature on living with progressive MS. The latest issue of the MS Society’s research magazine, Research Matters, also focuses on progressive MS. If you have not received a copy with this issue of MS Matters and would like one, please call 020 8438 0759.

Exercising sitting down

I have been wheelchair-bound for the last two years but was able to stand with help. However, I saw the physiotherapist last week and was told not to even try to stand nor think about walking, even with a walker, because my left leg has little if any muscle tone nor strength in it and no exercise would help. So I would be grateful if someone can tell me how as a 60-year-old woman, now in a nursing home, can keep active.

Ms F Higgins, by email

Exercising with MS is a free DVD from the MS Society. Presented by former Olympic champion hurdler, Sally Gunnell OBE, it demonstrates exercises that can be done sitting down as well as standing. You can watch it online at www.mssociety.org.uk. You can also order a copy via the website or by calling 020 8438 0799. The MS Society library has a wealth of other exercise DVDs and publications. You can browse the catalogue online at www.mssociety.org.uk/library, or Librarian at [email protected] or by calling 020 8438 0799. It’s also worth getting in touch with your local MS Society branch, as many branches offer exercise classes.


LETTERS

Put your thoughts on paper and send them to MS Matters, 372 Edgware Road, London NW2 6ND or email [email protected]

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Corrections and clarifi cations

In our feature, ‘Lighting the way’ (MS Matters 104), we inadvertently got the age of one of our torch-bearers wrong. Elaine Green, who carried the Olympic torch through Glasgow, is 59 and not 69, as we had it. Apologies to Mrs Green. Meanwhile, Anne Godwin, who carried the torch in Bedford, has asked us to point out that, although she has raised money for the MS Society in the past, it would be wrong to describe her as a regular ‘MS Society fundraiser’. Our Fundraising team have responded to a letter published in the last issue of MS Matters that was critical of some aspects of our MS Week appeal. There isn’t room to include it here, so you will fi nd it on page 25.

Disability discrimination and hate crime

Have you ever been discriminated against because of your disability? Have you ever been subject to a disability hate crime, such as being assaulted verbally or physically? What action did you take? What was the outcome? We’re planning a feature on discrimination and hate crime for the next issue and would like to hear your stories. Please email or write to the addresses below. Thank you.


PEOPLE

When the news broke that reality TV star Jack Osbourne had been diagnosed with MS, there was a brief but intense media frenzy. In the immediate aftermath of the announcement, the MS Society’s press offi ce was bombarded with requests from journalists wanting to talk to young people with MS. And there was a massive increase in visits to the Society’s website. But is all this attention necessarily a good thing? Hilary Freeman and Colin Richardson look behind the headlines.

It is a truth universally acknowledged that a charity in want of a celebrity fi gurehead will struggle to be heard. Celebrities reach the parts the rest of us can’t. People sit up and listen when celebrities start talking about themselves. So when someone in the public eye ‘comes out’ as having been diagnosed with MS, that’s a good thing, isn’t it? Good for the MS Society and good for people with MS? As so often in life, it’s not that simple. On Monday, 18 June, a new issue of Hello! magazine hit the newsstands and unleashed a media storm. The magazine contained an exclusive interview with 26-year-old Jack Osbourne and his talent-show-judge mother, Sharon. The cover line was stark: ‘The Osbournes’ devastating news. Family tell of their anguish.’ There was also a quote from Sharon: ‘Ozzy and I were saying, “Why him? Why not us?”, (Ozzy is Jack’s rock musician father.) Inside, Jack revealed that he had been diagnosed with MS shortly after the birth of his fi rst child, Pearl. The impact of Jack’s revelation was far-reaching. Jenna Litchfi eld, the MS Society’s senior press offi cer, and her colleagues were at the eye of the storm. ‘Lots of journalists called,’ says Jenna, ‘wanting to speak to other young people with MS, especially young dads, and this was helpful in showing MS can affect people in different ways. ‘At the MS Society, when anyone is newly diagnosed, our fi rst thought is: “do they have the support they need?” But if they are ready to share their story and they want to raise awareness of MS, then contacting the media is a great way of doing that.’ There was a noticeable increase in calls to the MS Helpline on the Monday that the Osbourne interview was published. And

THE OSBOURNE EFFECT


PEOPLE

There was a noticeable increase in calls to the MS Helpline on the Monday that the Osbourne interview was published. And there was an astonishing tenfold increase in visits to the MS Society website continues

Photography: Dario Cantatore/Getty Images

there was an astonishing tenfold increase in visits to the MS Society website. The media caravan has now moved on and the spotlight has shifted elsewhere. For the moment, MS isn’t news any more. Jack Osbourne will continue to make headlines, but his story no longer has any shock value. So did his decision to tell all really make a difference? Jenna Litchfi eld thinks it did. ‘Generally, awareness of MS is poor, so when a celebrity speaks out it’s incredibly helpful in raising awareness of MS, how it affects people and the symptoms,’ she says. ‘The media are always interested in hearing from celebrities who are willing to talk about a health condition.’ Jenna cites the examples of Janis Winehouse and Oritsé Williams, both of whom have featured in past issues of MS Matters. When her daughter, the hugely talented singer-songwriter Amy Winehouse, achieved international stardom six years ago, Janis Winehouse was courted by the press. They wanted to talk about Amy; she wanted to talk about MS, so she gave few interviews. Since Amy’s untimely death last year, Janis has stepped forward with greater alacrity, now that she can talk more on her own terms. ‘It’s been very helpful,’ says Jenna Litchfi eld, ‘because she talks a lot about her symptoms and her attitude to MS, and she has given the MS Society opportunities we could not have secured without her support (an interview on ITV’s Daybreak at the start of MS Week, for example).’ Oritsé Williams, founder of the phenomenally successful boyband JLS, is one of the Society’s most indefatigable supporters. His mother has MS and he was her principal carer as a teenager.

‘He’s passionate about raising awareness of MS and supporting other people affected by the condition,’ says Jenna, ‘and this is incredibly powerful, especially among younger audiences.’ For Jack Osbourne himself, the results of his announcement were mixed. He was rightly praised for having the courage to talk about his MS, especially as he had only recently been diagnosed. The fact that he is 26 helped get across the fact the people are most commonly diagnosed with MS in their 20s and 30s. And he talked openly about his symptoms and his fears for the future. Soon after, he received what he and, most especially, his mother perceived as a slap in the face. Jack had been lined up to star in a new reality TV show, Stars

Earn Stripes, in which celebrities undergo a series of strenuous physical military-inspired challenges, including the fi ring of live ammunition. But after the news of his diagnosis broke and shortly before fi lming was due to begin, Jack was told by NBC, the network that makes the show, that he was no longer wanted. Sharon Osbourne immediately resigned as a judge on the TV talent show, America’s Got Talent, also made by NBC, protesting at the network’s ‘discriminatory’ behaviour. ‘I just can’t be fake,’ she said. ‘It’s discrimination, and it was badly handled. It’s time to move on.’ In response, NBC’s Entertainment Chairman, Bob Greenblatt, said that the network ‘does not discriminate on any basis.’ He declined to discuss the reasons for dropping Jack Osbourne from the show, citing medical privacy, but pointed out that all participants had to undergo medical assessments.

PEOPLE

He said that Osbourne was offered other roles in the show but had turned them down. Sharon Osbourne responded by telling rival network CBS’s programme CBS This Morning

that she was sad to be leaving America’s Got Talent, but ‘I love my principles and my son more.’ Jack Osbourne is a wealthy young man and the loss of this particular job won’t cause him any great fi nancial hardship. But the episode does rather convey, to Jack himself and to the wider public, the unfortunate message that people with MS are a medical liability. Jack Osbourne told Hello! that he wanted to raise awareness of MS. Awareness, though, as he has discovered, can be a double-edged sword. Jenna Litchfi eld says: ‘I’ve spoken to actresses and radio presenters in the past who said they kept their MS a secret for fear of not getting work or for being judged differently. MS can be hard to come to terms with, and harder still when you have newspapers documenting your every move. It’s the same for anyone living with a long-term condition – you want to be known for who you are and what you do, not because you’re “that famous person with MS”.’ There is also a danger, says Jenna, ‘that journalists believe the condition affects everyone

in the same way. When the volume of media coverage rises, so, too, do inaccuracies.’ Jack Osbourne himself has criticised the media for sensationalising his story and even took to the social network, Twitter, to announce: ‘I AM NOT DYING!’ Matthew Saunders can sympathise with that cry from the heart. Matthew, 43, has secondary progressive MS and lives in London with his wife and 10-year-old son, Gregory. ‘I got a phone call from the school telling me that Gregory was very upset,’ says Matthew. ‘We were asked to come and collect him. This was most unlike my son and I was concerned. I spoke to his teacher and it turned out that news of Jack Osbourne’s diagnosis had fi ltered through to the playground. There was a lot of talk about what this meant. None of it was good. ‘Gregory went to the school library and looked up ‘multiple sclerosis’. The textbook, written 20 years ago, informed the reader that MS was a fatal disease. That was the nub of the problem. Gregory thought his father was going to die. ‘I had seen and heard some of the sensational reporting about Jack’s diagnosis the day before. Too much heat and not enough light. No wonder people were confused. When

Jack Osbourne himself has criticised the media for sensationalising his story and even took to the social network, Twitter, to announce: ‘I AM NOT DYING!’


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we got home, I got out the chocolate biscuits and poured out a glass of milk and we talked. I found it diffi cult as my throat was so tight. Children see things in black and white. MS does not fi t that pattern. I have never made a secret of my condition to my son. But I have only given out information as and when I felt it appropriate. So when I graduated from using a walking stick to crutches, I fi lled in a little more of the blanks. The underlying message, though, always remained a very positive one. ‘Once I started to use a wheelchair, more explanations were forthcoming. Gregory seemed content with what he was hearing. I thought so, until that phone call from the school. We sat in the kitchen, gently circling, probing and parrying around the subject. By the time Gregory had started on his third biscuit he had begun to open up. ‘He asked me outright, “Does MS kill people?” I answered truthfully: “No.” I paused for a beat and added that for some people MS can make things very diffi cult. But there are so many new treatments coming along that it is only a matter of time before the next big breakthrough.

PEOPLE

And when it happens, I advised cautiously, the word “cure” will be bandied around when what they really mean is “new treatment”. ‘There is no shame in acknowledging you have MS. It can be a very positive and uplifting statement. The public will be better informed and more accepting. ‘The only downside I can see is if the prognosis is poor. Many people remember Jacquline Du Pré [the brilliant cellist who had MS and died aged 42 in 1987] and forever equate MS with early death. Let’s hope Jack Osbourne is one of the lucky ones.’

‘It brings MS into the public eye, raises awareness – e.g., with JO, that it can happen to young people. But there have been a lot of inaccuracies about JO, too. They worry me, because I know newly diagnosed people will see them.’

Margo Milne

‘Anyone who looks at me can see how I am affected by it, but I have found that since the coverage, people have asked me more questions, and have wanted to know more about it. ‘I thought Sharon Osbourne’s outrage about Jack losing a job because of his MS was particularly helpful because it made people aware of how people with MS can continue to hold down normal jobs and live normal lives.’

Harriet Lloyd

‘I did get a little concerned at some of the more sensationalist coverage of JO’s diagnosis, particularly the bit about dying. I have spent a lot of time reassuring family at large that I’m not going to die from this, so it wasn’t particularly helpful. Luckily, the older members of the family have never heard of JO!’

Kirsten Cook


Oritsé Williams is one of the Society’s most indefatigable supporters

‘I think the more the exposure MS gets, the better. If it is done in the right way, it can be brilliant. However, it must be thought out and properly researched before going to the press because giving false information or impressions to the public can be so damaging and hurtful. I fi nd that people are generally ignorant about the condition, so any wrongly worded quotes can be damaging and remain so for a long time.’

Carrie Paterson

‘I do think it is a good thing when a celebrity comes out about their MS. I empathise with Jack and his diagnosis If the fact he is in the public eye will make people sit up and take notice of a condition which they would otherwise not necessarily relate to or know anything about, then that’s got to be a good thing, right?

Krystyna Howard

How did the Jack Osbourne story affect you? Hilary Freeman canvassed the views of fi ve people with MS.

Janis Winehouse has given the MS Society opportunities we could not have secured without her support

VOX POPS

PEOPLE


For some people, religious faith helps them adjust to life with MS. For others, faith is irrelevant. MS Matters asked an atheist and a Christian minister to explain their contrasting world views.

Dr Peter Thompson, 52, is a Reader in German and director of Centre for Ernst Bloch Studies at the University of Sheffi eld. Ernst Bloch (1883 to 1977) was a German philosopher who studied the relationship between religion and society. Peter Thompson left school at 16, joined the army for fi ve years and then worked as a lorry driver, before commencing undergraduate study as a mature student in 1983 at Portsmouth Polytechnic. He was diagnosed with MS just over a year ago.

THE ATHEIST ...

Did being diagnosed with MS shake your lack of religious faith?

No, not at all. In fact, quite the opposite because it proves to me precisely what I’ve always believed, which is that we are here because we are here, that it could be otherwise and that the stuff that happens to us while we are here is a result of all sorts of factors but has no actual signifi cance in any cosmic sense. The fact that I have MS means nothing other than that I have MS. I have all sorts of other things as well and all sorts of other things have happened to me, good and bad, but I don’t ascribe them to any sort of metaphysical intervention into my life.

Have you always been an atheist?

Yes, I think so. I come from a more or less atheist background on both sides of my family. My Nan used to tell us off for taking Christ’s name in vain, but other than that she did not observe any religious faith or go to church or anything. On my father’s side of the family, they were much more actively atheist, but certainly I have never had any faith as such. However, I fi nd religious faith a very interesting phenomenon and it is very much at the heart of my academic investigations into philosophy. When I go to church for weddings and funerals, I am always struck by the way in which these services and sermons are centrally about our vulnerability in the universe and our shout against the darkness that envelops us. For me, religious belief is a way of helping us to live with that darkness, but it can also take different forms – for example, a political belief in the role and the future of humanity, say a belief in socialism, can also have a religious dimension, and I don’t mean that in a negative way.

Photography: Supplied by Peter Robinson

The fact that I have MS means nothing other than that I have MS

PEOPLE

Have you always been a Christian?

For most of my life I had always been very far from God and Christianity. I was not brought up in a particularly Christian household; church never really seemed that relevant to my life. In fact, at the tender age of 14, you would probably fi nd me drinking in the pub. My faith was to be found in a pint of beer.


Gail Thompson, 54, is a former jazz musician and now Christian minister (she was ordained in 2011). A gifted baritone sax player, fl autist, composer and band-leader, Gail made her name in the 1980s, playing in a number of bands, including the National Youth Orchestra and the Charlie Watts Orchestra. She fi rst experienced the symptoms of MS in 1986 in the middle of a live performance with Art Blakey’s Jazz Messengers at the Shaw Theatre in London. She gave up playing that year, due to her MS, but continued to conduct and compose.

... AND THE MINISTER

continues

Did being diagnosed with MS shake your faith?

I was touring constantly as a professional musician. Prior to my fi rst MS attack, I had never given sickness a second thought. I witnessed and made some radical changes and transformations to my life as I railed against the injustice of my misery, affl iction and suffering. I had so many questions: How was I going to cope? Why me? What have I done to deserve this? Surely, if there were a God, would he really have a hand in this experience? Beside my bed in the hospital was a Gideon Bible; I had decided that maybe this was the time to search for answers. I opened the Bible at Psalm 102. I didn’t pretend to understand it or strive to comprehend it at all, but yet was completely overwhelmed by an unfamiliar but comforting experience. I remember looking up to the heavens and demanding to know what was happening to me. Asking for, confronting, and accepting the answers was the beginning of my faith. When we look to Jesus, the knowledge of the glory of God is revealed. I found my faith through multiple sclerosis.

Photography: Sharron Wallace

Knowing God has brought me peace, courage and strength


PEOPLE

Has being an atheist helped with your adjustment to living with MS?

Yes, I think so, but I don’t think it is necessary to be an atheist to make a good adjustment. I personally have adjusted to it because my MS is not too serious and the symptoms I have are very manageable, but also because I don’t have the problem of asking, ‘why me?’ The answer to that, of course, is: ‘why not me?’ As there is no reason for me having MS, there is no reason for me to be angry or to need consoling or any other such response to the illness.

In what ways, if any, does your atheism help with day-to-day life with MS?

I think that runs on from the last answer I gave. I’m sure that having a faith in some sort of deity who oversees us can be of comfort to some. For me, that doesn’t really work because I don’t really understand the deity who would both be caring and loving and yet unleash really very unpleasant illnesses on people, seemingly at random and for no reason. In the Christian tradition, I think this takes the form of a vengeful God and a loving Christ, a sort of ‘bad cop, good cop’ approach to faith. But it makes very little sense to me and I prefer to get by day-to-day by thinking simply that I have this disease and I have to live with it and learn to manage it and change my life in order to conquer it.

Do you think that having MS is any kind of test or judgement?

My atheism means that I do not see anything that happens to us as any sort of test or judgement sent from outside. I suppose one thing that someone with faith and I could agree on is, paradoxically, that we both agree with Nietzsche that ‘what doesn’t kill me makes me stronger.’ A believer would say that this test is sent to make our faith stronger, whereas I believe that it is a purely physical test which you can either succumb to or resist.

Has being a Christian helped with your adjustments to living with MS?

My greatest source of comfort has come from the knowledge that although we are all imperfect vessels, a perfect God dwells within us. It is never easy to face any serious kind of illness, but knowing God has brought me peace, courage and strength, learning through my own experiences how to reach out and comfort others.

In what ways if any, does your belief in God help with day-to-day life with MS??

‘As soon as I pray, you answer me; you encourage me by giving me strength.’ (Psalm138:3) When we are going through tough times, we need to know why, and what we should do when we are in them. If not, we become confused, frustrated and disillusioned. Intellectual answers, no matter how reasonable or logical, may not bring relief in the midst of suffering. I believe that the God of the Bible is loving and powerful in spite of the existence of suffering. Jesus said to his disciples, ‘in this world you will have tribulation, but be of good cheer, I have overcome the world’ (John 16:33). Living with an illness can be isolating and lonely, but I know that God loves me more deeply than I can ever imagine. My future is in the hands of God, whose power abides beyond my suffering.

Do you think that having MS is any kind of test or judgement?

God does not look upon trouble as we do. Where we see stress, He sees opportunities. Where we see crisis, He sees growth and development. Trials are not always pleasant and may be extremely grievous. But as a Christian minister, I consider them opportunities for rejoicing, to dig my roots deeper into God’s word and witness his deliverance and victory over adversary. God allows tests and trials to establish us in our most holy faith. Mountains can seem daunting, sometimes even impossible, yet the Lord has asked me to trust him and rely on his support to see my mountains conquered.

distinctions between good spells and bad dissolved. The pins and needles and other sensory distortions became permanent features. The slight limp became a stagger; the stick and crutches gave way to a wheelchair. Hard to believe, but the changes were so incremental that I hardly noticed. It was only at benchmark moments, such as summer holidays, when it became apparent. One year, I could get down the steps to the swimming pool; the next, I couldn’t. Somewhere in between I’d lost the ability. I’ve had MS for 19 years, but it’s only for the past nine, since it became progressive, that it has noticeably encroached on my day-to-day activities. Yes, it’s a bloody nuisance, but, hey-ho, you’ve just got to crack on. I can no longer use my legs for walking, but they still enable me to stand up for a couple of minutes. There is not a lot I can usefully accomplish standing up for this amount of time, but the weight-bearing exercise is good for the bones. My dexterity is now poor, so crocheting and needlepoint are no longer options... But I am fortunate that I can still drive an adapted car, which gives a great sense of freedom. Assistive technology, such as voice recognition software, enables me to keep working.

PROGRESSIVE MS

No quick winsWith progressive MS, it feels like everything takes forever. Anthony Stone, 50, who lives in London, explains.

Most people have a clear recollection of the day they were told their diagnosis. It is often harder to pinpoint the tipping point when your condition moves into the progressive stage. Sometimes the doctors seem at a loss, too. Progressive MS is a stealthy thief; it gently robs you little by little. In my case, the journey from relapsing remitting to progressive took about 10 years. The clear


LONG AND WINDING ROAD

PROGRESSIVE MS

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There’s a perception that progressive MS is treated as the poor relation when it comes to fi nding effective treatments. Whereas great improvements have been made in treating the relapsing and remitting form of the disease, there are no effective drug therapies for progressive MS. ‘The lack of drug therapies is frustrating, but it is not through lack of trying,’ says Dr Raj Kapoor, a consultant at the National Hospital for Neurology, Queen Square, London. ‘The frustration is totally understandable, but the implication is that we are ignoring progressive MS. Far from it, actually. A lot of work has gone on, but we have not had the right answers. Beta interferon works well at preventing relapses, but it does not stop progression. We have tried other drugs, but it is frustrating for everybody that they don’t seem to work. We are doing the same thing now with Tysabri. It is fantastic for relapsing remitting. But is it any good at preventing progression?’ Dr Kapoor is trying to understand progression; he is looking for answers to why neuro- degeneration [see glossary, page 20] happens at a basic level and is designing drug trials to prevent it. ‘It is not easy trying to infl uence progression; we have to fi nd why

progression occurs. In relapsing MS there is lots of infl ammation. While this is present at the beginning of MS, it is less of a feature in secondary progressive. With progressive MS, neuro-degeneration almost becomes the main feature of the condition.’ For someone locking horns with such a complex puzzle, Dr Kapoor is confi dent of a measure of success. ‘The fi rst thing to say is that lots of people are looking at why MS progresses. At a basic level, the biology is still being worked out.’ Dr Kapoor points to the breadth and depth of current research, both in the UK and abroad, including clinical trials of several promising drugs. ‘So far from being something we are waiting to tackle, we are tackling it now,’ he says. ‘The second thing to say is that the biology of neuro-protection is being worked out. We already have drug targets that we are working on. And there is exciting work on re-myelination being carried out at Cambridge and Edinburgh [see ‘What is the MS Society doing?’, page 20].’ Several trials, including ones of Tysabri and Gilenya [another drug that is currently used to treat severe relapsing remitting MS], will report in the next two to three years.

Progressive MS is, or will become at some point, a reality for most people with MS. Yet, there are no effective drug treatments for the condition and people who have it often feel as though they’ve been forgotten. Anthony Stone describes what it’s like to live with progressive MS, talks to someone else who knows, and hears from a leading neurologist about the prospects for future treatments.

Having limited movement can be frustrating; everything takes forever. One of the things I have found hardest to accept is to have to continually ask people (usually my wife) for help. It is usually the small things: please pass me this or that; do you mind getting me ...? You need stamina for life’s daily skirmishes because progressive MS is a long war of attrition. While I wait for effective drug therapies to come on line, I try and eat well, exercise and keep the Black Dog in the kennel. It feeds on fear and uncertainty, and that is my biggest challenge.


The journey from relapsing remitting to progressive took about 10 years. The clear distinctions between good spells and bad dissolved

PROGRESSIVE MS

Even when trials seemingly fail, there can be silver linings. A recent trial of lamotrigine [a treatment for epilepsy and mild bi-polar disorder] was unsuccessful. ‘The drug did not work for MS – that was the headline. But there were interesting glimmers of hope that came out of that,’ says Dr Kapoor. ‘It has propelled researchers around the world and has led to further trials. The MS Society here and in America is trialling a similar drug for optic neuritis to prevent damage to the eye. That trial is going on right now. All of this work means that I think we will see a different landscape. There is clearly hope because there is so much going on.’ The upbeat message across the research community is gathering pace. From an historical viewpoint we know that people with MS are better now than at any point. This is down to improved lifestyles and all the good things people do, such as exercise regimes and healthy diets. Symptom management, too, is getting better. This is mainly to do with greater access to services: MS nurses, physiotherapy, hydrotherapy, counselling, exercise programmes, dietitians and occupational therapy. A diagnosis of progressive MS does not necessarily mean succumbing to ever-worsening disability.


‘Decline is very variable,’ says Dr Kapoor. ‘Progressive means that, by and large, we see people get worse. If you take 1,000 people with progressive MS, you see a gradual decline over time. But when you look at individuals, the picture is varied. Some get better before they get worse. For some, their MS might stabilise. What you do not know is when or whether it might re-emerge later on.’ So, with the research and the trials, there is reason for guarded optimism. In the meantime, work goes on to better our understanding of progressive MS, work that Dr Kapoor and many others believe will change the outlook within fi ve years.

Getting on with lifeSophie Hoad, 49, has had primary progressive MS for 27 years. She lives in Chichester.

One day, I noticed I was numb on the side of one fi nger. I went to my GP and she referred me to the hospital for tests. She had written her thesis on MS as a medical student, so she knew what it might mean. I wasn’t worried because the hospital did not tell me what they were looking for. After the lumbar puncture, when he was sure, the consultant told me it was primary progressive MS. I had never heard of MS. I later bought myself a book and started reading up about it. I have tried different diets and natural therapies over the years to see if they would help: they haven’t. My GP said that taking steroids might relieve some symptoms for a short time but would not slow the process long-term, so I didn’t take them. Now I’m in a wheelchair and can’t bear weight. I can just about move my arms and hands very slightly. I have eyesight problems (nystagmus; involuntary eye movements) and my voice can be hard to understand when I’m tired. I have 24-hour care: two community service volunteers

A diagnosis of progressive MS does not necessarily mean succumbing to ever-worsening disability


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If I could go back in time andoffer my younger self someadvice, it would be: have funwhile you still can

PROGRESSIVE MS

live with me and each works 35 hours a week. I also have 60 hours a week of county council care plus I get the money to spend on my care via Direct Payments. Without the volunteers, the 60 hours a week would be completely inadequate. I am getting slowly worse and can no longer do anything for myself in the physical way. I have had it for 27 years – that’s half of my life. I don’t think about what it is like not to have MS. If I have a day when I think ‘today has been good’, it is because I have seen a fi lm or had an email from my daughter at university, not anything to do with the MS. I have no privacy. I can’t pick up the phone. If I want to send an email, I compose it in my head then dictate it and someone types it for me. I know that there is nothing wrong with my mind. It wasn’t always like this. Before diagnosis I was a successful experimental fi lm-maker. I worked long hours and enjoyed partying when my day’s work was done. I had set up my own small fi lm company with a friend. When I was diagnosed, I had a boyfriend. We subsequently got married and had a daughter, Xanthe. In the beginning, I was well enough to run a household and bring up my daughter so it didn’t matter that my husband

wasn’t working and that I was looking after him as well, even though he wasn’t ill. As the years passed and I became more disabled, there were some things that I could no longer do – cooking, cleaning and laundry. Eventually, my husband decided to leave. It is very hard to say if our relationship would have survived even if I did not have MS. Before her father died, my daughter lived with me half of the time. Since his death, she lives with me all the time – except during term-time, when she is at Sheffi eld University studying physics. Our relationship is like any mother and daughter bond; we are close. She doesn’t have to do anything physical for me, but she can do things if she wants to. I remain positive; everything has been so gradual. No one wants to have MS, but if you have it, there’s nothing you can do, so just get on with it. The nystagmus is very diffi cult for me; I can still see, but not

like others do. I enjoy going to the cinema about three times a week. Because the images are so big, my nystagmus doesn’t matter. I go to an independent cinema down the road that shows a variety of unusual fi lms. I also like to go to MS-related events. I listen to the talking newspapers, stories, biographies and radio programmes, and I enjoy shopping online. To look at me you wouldn’t guess there was anything wrong, although I can barely move most of my body, cannot walk, feed myself or get in and out of bed without assistance. My disability centres on fatigue and my sight; everything else is inside me, none of which shows. If I could go back in time and offer my younger self some advice, it would be: have fun while you still can.


PROGRESSIVE MS


Glossary

Neuro-degeneration is when nerve fi bres progressively stop working, as seen in conditions such as progressive MS.

Infl ammation is caused when the immune system attacks a foreign body, such as a virus. In MS, the immune system mistakenly attacks myelin – the protective coating around nerve fi bres in the brain and spinal cord. This causes infl ammation and, in time, damage to the myelin.

Re-myelination is when damaged myelin is repaired. This potentially improves recovery from a relapse and protects nerve fi bres from neuro-degeneration.

What is progressive MS?

Around 85 per cent of people with MS are initially diagnosed with relapsing remitting MS (RRMS). They will have times – known as a relapse – when they experience a range of symptoms, sometimes quite severely. However, with relapsing remitting MS, people recover completely or partially from the relapse – they go into remission. Most people with RRMS are diagnosed between the ages of 20 and 40, though it can be diagnosed in younger or older people. When a person has progressive MS, however, there is a sustained build-up of disability, independent of any relapses. There are two main types of progressive MS:

Primary progressive MS (PPMS) affects around 10 to 15 per cent of people with MS. The condition is progressive from the outset, with a steady worsening of symptoms over time. There is no preceding relapsing remitting phase. PPMS tends to be diagnosed in people in their 40s or 50s, although it can develop earlier or later.

Secondary progressive MS (SPMS) affects people who are initially diagnosed with relapsing remitting MS. Most, but not all, people with RRMS do eventually develop SPMS. On average, 65 per cent of people with RRMS will develop SPMS within 15 years of diagnosis.

What the MS Society is doing

We spend around £4m per year on research, a signifi cant amount of which is aimed at increasing our understanding of progressive MS or developing new treatments. In a specifi c initiative, we have joined MS charities from around the world to lead a new collaboration to speed up the development of treatments for people with progressive MS. The International Progressive MS Collaborative links MS charities from the UK, USA, Canada, Italy, the Netherlands and the Multiple Sclerosis International Federation for the purpose of identifying priority areas for research.

The latest edition of our research news magazine, Research Matters, focuses on progressive MS. Most of you will have received a copy with this issue of MS Matters. If you haven’t, but would like to receive one, you can download it from the Society website at www.mssociety.org.uk/research or order a copy by calling 020 8438 0759.

The Cambridge Centre for Myelin Repair and the Edinburgh Centre for Translational Research are two of the Society’s major investments. In the past two years, they have made a major breakthrough in discovering how it might be possible to repair damaged myelin, holding out the possibility of treatments for all forms of MS.

What is primary progressive MS? and What is secondary progressive MS? are free booklets from the MS Society. Download from www.mssociety.org.uk or call 020 8438 0799 for a copy. You can talk about anything to do with MS by calling or emailing the MS Helpline. Phone 0808 800 8000 (Mon to Fri, 9am to 9pm; Sat, 10am to 1pm) or email [email protected]

Far from being something we are waiting to tackle, we are tackling progressive MS now

Stress, anxiety and depression are commonly experienced by people with MS. Francesca Buckley outlines some strategies for coping.

From distress to de-stressThe words ‘stress’, ‘anxiety’ and ‘depression’ are bandied about so frequently that the words themselves hardly have any meaning. Rushing out to do the school run, working an extra-long day, or having lots of social engagements are all regularly used as reasons for being ‘stressed’. People are ‘depressed’ because of the long wintry nights, or because they’re a little bit bored at work or home. Stress and anxiety could overwhelm you, as you may struggle with any, or all of the tasks above. Fortunately, our MS experts, carers and those affected by MS are here to offer sanity-saving tips. Data from the UK MS Register, launched in May 2011, shows that half of all people registered experienced anxiety or depression, with women with relapsing remitting MS the most likely to be anxious. Depression is higher in progressive forms of MS, and much higher than in the general population. Stress is defi ned as anything that disturbs a person’s emotional well-being, by creating tensions and strains. As MS is unpredictable, it can cause major physical, social and economic changes, which are often stressful. Being diagnosed with MS, new symptoms and worries over the future are among the most stressful situations. Continued exposure to stress can lead to further emotional symptoms such as anxiety – which if left untreated, can develop into depression. Sometimes, the very drugs that are supposed to help, such as steroids, can cause depression, as can stopping taking the drugs at the end of treatment. Disease-modifying drugs such as beta interferons can also sometimes cause depression, as can Modafi nil, used to treat fatigue. Other drugs, such as Baclofen, can cause agitation or altered moods if stopped suddenly. Fortunately, cognitive behavioural therapy (CBT), psychotherapy, counselling and self-help groups can all help tackle stress, anxiety and depression. CBT teaches targeted problem-solving techniques face-to-face, over the phone, on-line or through self-help manuals. A research study funded by the MS Society found that this form of therapy signifi cantly improved the emotional well-being of many people with MS. Dr Anita Rose, Consultant Neuropsychologist, recommends several strategies to manage fear and anxiety. These include setting aside fi ve minutes twice a day as ‘worrying time.’ Allow yourself to focus on the things you are worried about in this time.

After that, set them aside until your next fi ve minute appointment. Sharing your fears with others can be very benefi cial, as can writing a ‘coping list,’ which details things you can do to help yourself. Dr Rose recommends that you recognise how thinking negatively affects your emotions and instead take back control, give yourself credit, recognise positive achievements and avoid the blame game. She also suggests countering stress by redefi ning your family and personal relationships so that you have manageable responsibilities. Things like using


MANAGING MS

complementary therapies, and exercising can also be benefi cial. Keeping a stress-diary over two months is also recommended so that you can monitor what causes you stress, avoid those situations in the future, and set yourself realistic goals that you can achieve. To help with depression, it is good to prepare yourself for episodes of change, keeping up the activities you enjoy, proving to yourself you can cope, and talking to your GP. When we asked you for your tips and stories about coping with stress, we were inundated with replies. Here are just a few: Lyn, who has spoken for the MS Society on the theme of living with MS, says: ‘Despair and depression lingered for many weeks (after diagnosis) but little by little I started to pick up the threads of my life again. For me, the emotional aspect is the hardest to deal with. Physical limitations you learn to adjust to, but the fear and uncertainty of what the future may hold never goes away.’ Carole has MS and has been involved with the MS Society Research Network. She says that for her, stress, anxiety and depression are all closely linked. ‘I sometimes can’t seem to cope with everyday living. I get overwhelmed with everything and even little things are too much for me sometimes.’ This is exacerbated by the pressures of being a single parent, and the fi nancial implications of her MS. Carole relies on various techniques to support herself, including: ‘massage, relaxation techniques, meditation; trying not to be too hard on myself; not being too ambitious with my plans or with things that I am doing; planning for things rather than always being more spontaneous;

making sure that I can get suffi cient rest before and after doing something; and writing things down so that I don’t have to remember so much – I keep a notebook and pen with me all the time!’ Writing on the MS Society Facebook page, Shoshana says: ‘I get stressed out when I have to fi nd large sums of money to fi x things that I absolutely cannot be without because I lose my ability to get out independently or communicate with the world.’ Shoshana says massage, meditation techniques and exercise classes at her MS Treatment centre all help her tackle stress. Becky writes: ‘I used to get very stressed when I couldn’t do what I used to be able to, e.g. knitting, holding a teapot, walking with no pain and even caring for my three babies. I decided I had to STOP wishing I never had MS, STOP getting worked up if it takes me an hour to make tea and choose new hobbies – it’s no longer a hobby if it stresses you out trying to do it!’ Danielle says: ‘I struggle when I don’t have a regular routine. Having to get up earlier than usual, or working a longer day, or missing a walk with my dog seem to really affect my stress levels, which impact on my fatigue and cog fog. I also struggle when I don’t feel in control – I need “to do” lists, post-it notes, alarms, diary reminders, schedules and plans to keep my head in a good place.’

MS Essentials 10: Mood, depression and emotions is a free publication from the MS Society, also available in large print and an audio CD. Download from the Society website at www.mssociety.org.uk, call 020 8438 0799 or email [email protected]

MS Essentials 28: Living with the effects of MS is a free publication from the MS Society, also available in large print and an audio CD. Download from the Society website at www.mssociety.org.uk, call 020 8438 0799 or email [email protected]

UK MS Register was launched in May 2011 by the MS Society and the University of Swansea. For more information, contact our research team on 020 8438 0700 or visit www.ukmsregister.org

You can talk to the MS Helpline about any aspect of life with MS. See page 1 for contact details and opening hours.


MANAGING MS

Photography: Philip Lee Harvey/Getty Images


YOUR SOCIETY

Members voted on three resolutions:

To approve the Annual Report and Accounts for 2011.For: 4,364 votes; Against: 26; Abstentions: 87.

To confi rm Crowe Clarke Whitehill LLP as the Society’s auditors for 2013.For: 4,373; Against: 28; Abstentions: 90.

The Society is looking forward to celebrating and using its 60th anniversary to recognise the tremendous achievements of members, volunteers, donors and staff, raise awareness of our work and ‘get loud’.For: 4,291; Against: 49; Abstentions: 106.

More information about the AGM, including the resolutions, elections and voting on the day, is available at www.mssociety.org.uk/agm-2012. For any comments or queries about the AGM, please email [email protected] or call 020 8438 0470.

AGM recognises the Society’s shining stars

The MS Society’s Annual General Meeting was held on Saturday, 15 September 2012. It was the Society’s 59th AGM, but only its second meeting as a charitable company. Members got an overview of the Society’s activities in 2011 in a speech by the Chief Executive, Simon Gillespie, which also revealed plans to achieve its goals and objectives in the coming years. In her fi rst AGM since her appointment as Chairman of the Society, Hilary Sears welcomed re-elected John Litchfi eld and newly elected Esther Foreman to the board of trustees. She offered thanks to Ian Douglas, who was stepping down as treasurer and was awarded a ‘Shining Star’ in recognition of seven years of service on the Board. ‘Shining Stars’ and a show of appreciation were also offered to Clare Ball, our former Chair of Audit and Risk, and Peter Mallaburn, trustee, who are also stepping down. Ann Hodgson, outgoing Chair of the Cymru National Council, proposed the vote of thanks. She is standing down this year and Stuart Nixon, on behalf of the Society, spoke of Ann’s inspirational work in Wales and across the Society. Ann, too, was given a ‘Shining Star’ by Hilary Sears.

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Ian Douglas receives his ‘Shining Star’ from Hilary Sears

Ann Hodgson and Stuart Nixon


YOUR SOCIETY

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getting decisions about forthcoming benefi t changes wrong will not only deny people this right, but could have major fi nancial costs for the government. We need your help to get this message across louder than ever! It’s really easy to support the campaign:

Tell people about it – spread the word on Facebook, tweet @hardesthit, speak to your neighbours, or raise the campaign at your branch.

Attend a Hardest Hit event – you can fi nd details at www.mssociety.org.uk/events or call 020 8438 0799.

Contact your MP – visit them or write to them to have your say.

For information on how to get involved, visit our website at www.mssociety.org.uk/hardesthit, email [email protected] or call 020 8438 0700.

Vote for us when you shop online with Waitrose

Until November, when you shop online with Waitrose for your groceries, you can vote for the MS Society to receive a share of £25,000.Votes will be counted at the end of November and the £25,000 will be shared amongst the MS Society and two other charities – the more votes we get then the bigger our share of the money.

To shop and to fi nd out more, visit www.waitrose.com

Badges help the fi ghtback

In the last issue of MS Matters, we published a letter from Nick Lewis and Peter Draper of the MS Society’s West Oxfordshire branch, in which they questioned the need for badges in the MS Week fundraising appeal. Here, Charlene Vallory of our Fundraising team responds: ‘As a member of the MS Society Fundraising team, I thought it would be nice to offer an explanation of the use of stickers in our MS Week appeal, “fi ght back”. ‘We’ve found, historically, that asking our supporters to get involved in this way (in this instance, joining the “fi ght back”), increases the number of responses we receive from an appeal – which helps us to raise the vital funds we need in order to support people living with MS on a daily basis, and continue to fund research into treatments for MS. ‘The stickers were not designed for people with MS to wear as a label, but to raise awareness of the condition and show that the MS Society and our supporters are doing all they can to fi ght back against it. Needless to say, it is a completely personal choice as to whether individuals choose to make use of the stickers or not. ‘We always strive to provide a balanced view of the lives of people living with MS to the public and achieve that in a variety of ways – for example, through our supporter magazine, Advances, the inspiring stories on our website and the hugely uplifting MS Society Awards. ‘If you would like to share your views or ask any questions about our fundraising techniques, please get in touch by emailing [email protected]’

The Hardest Hit campaign is back!

Right now, we’re at a key turning point: the government is making crucial decisions on benefi t reform and where to make further cuts to the welfare budget. That’s why, from 20 to 28 October, disabled people, carers, and the organisations and groups who represent them are coming together to send a message to the government to get it right for disabled people. With the right support, people with MS can live fulfi lling lives and make a valuable contribution. But

Support the MS Society this Christmas!

We have plenty of ways to get involved this Christmas – browse our Christmas catalogue, send an eCard or do some festive fundraising.

Alternative to Christmas Crackers

Why not donate the money that you would normally spend on Christmas crackers to the MS Society? We will then send you our cracking Christmas place cards, which include space to write the names of your guests, a message explaining that a donation has been made to the MS Society on their behalf and a festive joke. Order today online at www.mssociety.org.uk/crackers, by phoning us on 020 8438 0889 or by posting a cheque made payable to ‘The MS Society’ (our suggested donation is £3 per person, but please give whatever you can) along with your details and the number of place cards you require to Christmas Fundraising, MS National Centre, 372 Edgware Road, London, NW2 6ND.

Santa Dash

Get together with friends and family and enjoy these festive fun-runs – in Liverpool on 2 December and in Greenwich and Melton Mowbray on 9 December.www.mssociety.org.uk/santa

Cryptic Christmas Quiz

Sell copies of the quiz sheets to friends and family. www.mssociety.org.uk/xmasquiz

Secret Bakers

Secretly bake some mince pies or festive treats for your colleagues and raise funds, using our Secret Baker fundraising pack. www.mssociety.org.uk/secretbaker

You can fi nd out more by visiting www.mssociety.org.uk/christmas, emailing [email protected] or calling us on 0845 481 1577.

Fundraising news

Shopping centres support the Society

In April, the MS Society was chosen as Land Securities’ Retail National Charity Partner for the year to April 2013. Land Securities are the largest commercial property company in the UK, and through this relationship we have been offered prime space inside 20 of their shopping centres nationwide and access to their 60 million visitors. Land Securities have set a fundraising target of £100,000. The income raised will be split between national projects and local branches involved with the partnership. Fundraising activities are well underway across the centres. We anticipate that the partnership will deliver long-term benefi ts for the MS community by providing a platform to recruit volunteers, generate income and promote our services and information provision. This is also an ideal opportunity for branches to build local networks with retailers, leaving a lasting legacy from the national partnership.

To fi nd out more, email [email protected] or call 020 8438 0700 and ask for ‘Corporate Partnerships’.


YOUR SOCIETY

‘Get Active’ event, Westgate Centre, Oxford


MANAGING MS

When a drug is licensed for use in the UK, it doesn’t automatically become available on the NHS. Fampyra, which helps improve the walking speed of some people with MS, is one such treatment. We talk to two people about their experiences of obtaining and taking the drug.

The cost Marianne Gray

I took Fampyra twice a day for a fortnight and the pills cost me £272 via a private prescription. It certainly did what it says on the can – from day one I roared round like the Duracell Bunny. However, with extra speed I found myself cornering too fast and had two bad falls, including one in my kitchen, when I crashed down onto my own wine rack, displacing my right hip sacroiliac joint. This rather blurred my ability to notice any mobility improvement as there was so much diffi culty in moving at all. When my osteo got his hands on my back he said it looked like some alien from Mars had landed there. It took a while for the pill to be comfortable. At fi rst there was dizziness, bad balance and loss of appetite. I felt that the rush of energy and increased speed meant the day’s energy supply was used up early and hence there was not a remarkable difference in my speed or agility by mid-afternoon. But this changed as Fampyra and I settled down and became friends. The worst of the side-effects was feeling more unbalanced than usual, which, of course, meant that as I was moving faster I was more likely to lose my balance courtesy of this unsteadiness. My stick became vitally important. I think the worst thing about taking this drug is that it has to be taken twice a day, 12 hours apart, on an empty stomach, two hours before or after you eat. I work as a freelance journalist and no two days are the same. The idea of any regular meal-time was unknown in my house until I met Ms Fampyra. (I have given this pill the female gender as she sounds like Dracula’s sister.) Suddenly, there was no snacking in the evening while watching the 10 o’clock news any more, as the pill had to be taken an hour later. Ditto in the morning – the muesli container found itself being on call at nine to make the 11 o’clock Fampyra deadline. Generally, I DO think it’s made a difference. It showed me, at times, what I am still capable of. However, with MS, when can anyone ever be sure? Right now, I won’t take a further fortnight of the pill because I am not 100 per cent sure it works for me. I know this is unfair on the drug, but I’ll wait for Fampyra to come on the NHS and try it again when it isn’t something that breaks the bank.


MANAGING MS

What is Fampyra?Fampyra (also known as Fampridine-PR, or Ampyra in the US) is a slow-release tablet developed for people with MS to improve walking speed and ability. It is taken in 10mg doses twice a day.

How does it work?Fampyra is a type of drug known as a potassium channel blocker. It is thought that it improves the transmission of nerve impulses down damaged nerve fi bres, thereby improving walking ability in people with MS.

Who can benefi t from Fampyra?Clinical trials found that it benefi ted 43 per cent of people with MS, improving their walking speed by up to 25 per cent. Generally speaking, people fi nd out within two to three weeks whether it works for them. In August 2011, Fampyra was granted a conditional licence by the European Medicines Agency (EMA) for people with MS who have severe walking disability – an EDSS score of between four and seven. The EDSS, or Expanded Disability Status Scale, is a ten-point measure of physical disability – an EDSS score of 10 indicates the greatest degree of disability; a score of one, the least. The conditional licence means that the EMA considers that the benefi ts of Fampyra outweigh the risks. However, before making the licence permanent, the EMA requires Fampyra’s manufacturers to submit further data, possibly from new clinical trials, on the drug’s safety and effi cacy.

of new treatments

continues

Ian Hewitt

I read a lot of things about MS on the internet, and when I was on some American sites I heard about Fampyra (which they call Ampyra in the US) and a lot of people were saying how good it was and that it had improved the speed of their walking. Some people said that it had done nothing for them, but I was intrigued and wanted to try it out. Fampyra is not available on the NHS so I got a private prescription. I’m feeling a bit desperate on the MS front these days, and I wanted a) to see if it could help me, and b) I didn’t want to wait months until it gets the NICE go-ahead. I don’t think the government wants to pay for any new drugs right now, so it could be some time before it is available. I thought that by the time that happens, if it happens, it would be too late for me. I think that Fampyra benefi ts about 40 per cent of patients, and I was told that I would know within about two weeks if it would work for me. Unfortunately, it made no difference to me at all. My neighbour was very encouraging and insisted that she saw an improvement in my walking after about three days! But I was not convinced. Two other friends said that they noticed an improvement in my walking, but I didn’t. I do remember that one day I was going along the street and I thought, ‘wow, I am walking more quickly’, but whether I was in gung-ho mood and making a special effort, or if it was the Fampyra, I don’t know. Either way, the feeling was short-lived and I didn’t have it again.

Ian Hewitt is not our correspondent’s real name.


MANAGING MS

What are the side-effects?Common side-effects include urinary tract infections, insomnia, headache, nausea, dizziness, back pain, fatigue and balance problems. In a trial involving 240 people, one person also experienced anxiety and one person had a seizure. In another trial, fainting was noted as a potential side-effect.

Can I get an NHS prescription for Fampyra?Yes, but only if your local health authority agrees to fund the treatment. There is no legal obligation on them to do so. The company that markets Fampyra in Europe, Biogen Idec, is offering to supply free-of-charge up to a month’s supply of the drug to anyone who is considered eligible. The aim of the scheme is to give people the opportunity to fi nd out without having to pay out hundreds of pounds whether the drug works for them (remember, it has only been found to benefi t 43 per cent of people with MS with a severe walking disability; most people will derive no benefi t from it). To apply for a month’s free supply, your doctor or neurologist will have to contact the company and make a formal application. You will need your doctor or neurologist to assess your walking ability at the beginning and end of the trial period to determine whether or not Fampyra has made any signifi cant improvement to your mobility. If it has, that may help to persuade your local health authority to fund further treatment on the NHS. However, there is no guarantee that they will do so; in which case, if you want to continue to take the drug, you will have pay the full cost of the treatment yourself via a private prescription.

What is a private prescription?Provided that a drug has been licensed for use in the UK and that you are eligible to receive it, your doctor may give you a private prescription for it. This means that instead of paying the standard NHS charge of £7.40, you will have to pay the full cost of the drug.


We have published four free guides to campaigning for access to drugs. The guides, How to campaign for... Access to MS medicines in England/Northern Ireland/Scotland/Wales, include details of how to apply for medicines that have not been approved by NICE, such as Fampyra. They are available for download from the MS Society website at www.mssociety.org.uk or you can obtain copies by calling 020 8438 0799.

The South West Peninsula Health Technology Commissioning Group, which is made up of four NHS primary care trusts in the south-west of England, has just completed a consultation on the use of Fampyra in order to agree on a single approach to the provision of the drug. The MS Society submitted evidence to the consultation.

We are always keen to hear people’s experiences of accessing MS-related drug treatments. If you would like to tell us your story – whether about Fampyra or other drugs – please email [email protected], call 020 8438 0700 and ask for the Campaigns team or write to Policy and Campaigns, MS Society, 372 Edgware Road, London NW2 6ND.


RESEARCH

In the last issue of MS Matters, we looked at how clinical trials of potential drug treatments work. Here, we look at how non-drug treatments are tested.

How do non-drug trials work?

Clinical trials are not only concerned with developing new drug treatments. There are also trials looking at ways of improving diagnosis, surgical procedures, trials of medical equipment and trials of psychological treatments, for example. Such trials compare new treatments or techniques against existing procedures or will compare them with no treatment – so a trial may, for instance, compare the effects of taking certain types of exercise with taking no exercise at all. Non-drug trials generally follow the model for drug trials, which means that they progress in phases designed to test the safety and effi cacy of a particular treatment. Where appropriate, they may compare a treatment to a placebo or dummy treatment. Otherwise, they will compare a new treatment or technique with a ‘control’– such as comparing one type of exercise with another. They also use many techniques for gathering data, according to the subject of the study, some of which are the same as those used in drug trials. Researchers may conduct interviews (in person or over the phone) with participants or ask them to fi ll in a questionnaire or keep a diary. Trial participants might be asked to test equipment or to perform some kind of physical activity. They will usually have their general state of health measured by blood and urine samples and the recording of blood pressure. They could be given psychological assessments to determine whether a particular psychological treatment has any benefi cial impact on a person’s mood. Physical capabilities may also be measured – the distance a person can walk and their walking speed, for example. Once a non-drug trial has identifi ed that a treatment works and is safe, a number of things can happen. Some non-drug interventions (such as medical devices) may have to be licensed. Some may be considered by NICE (who will recommend whether or not they should become available on the NHS). But that is by no means always the case. Many non-drug trials have different outcomes, it all depends on what the intervention is.

Testing non-dr

Janet Smith: trial participant

‘I took part in a trial that investigated the effect of different exercise intensities in people with MS. The research project, funded by the MS Society, was led by Andy Meaney at Oxford Brookes University. ‘I met Andy at an event run by the Thames Valley MS Group. He was there to talk about the trial, and I thought, “that sounds interesting”, so I volunteered and was recruited. ‘I went to Oxford for an initial assessment. I was asked to ride a static bike and was hooked up to breathing apparatus that measured my breathing. Weights were added to the bike at regular intervals making it harder to cycle, and they would take blood from the end of my fi nger every so often. I had to keep pedalling until it was too hard. I had to walk back and forth between two fi xed points and they counted how many ‘laps’ I did in fi ve minutes, and they measured the force with which I could push down my legs. ‘As a result of these tests we were divided into different groups and I was in the 20 minute continuous exercise group. I think others did faster or slower cycling. ‘We started the cycling at The Windsor Club, Helston Lane, Windsor and I did some of it at the Thames Valley Athletic centre in Eton. Andy came and did the testing, and this happened twice a week for 12 weeks. I went to Oxford for assessments three times, at the beginning and the end of the trial, and I think some time after it ended.’


RESEARCH


Every year, the MS Society funds a number of clinical trials, covering both drug and non-drug treatments. Examples of non-drug trials we have funded include a trial of FES (Functional Electronic Stimulation) as a treatment for foot-drop in MS and the development of a telephone-based therapy for people affected by primary and secondary progressive MS. The Society is currently supporting around 60 research projects, with a combined cost of more than £16 million. For full details of the Society’s research programme, visit www.mssociety.org.uk/research

The Research Network offers people affected by MS an opportunity to shape the Society’s research programme. Email [email protected] or call 020 8438 0921 for more details.

The MS Register, funded by the MS Society, combines information from you – the person who lives with MS – with clinical and NHS data. It will help form an accurate picture of what it’s like to live with MS that will completely revolutionise our understanding. To join, visit www.ukmsregister.org

drug treatments for MS

How to take part in a clinical trial

If you want to take part in a clinical trial, talk to your neurologist, doctor or MS nurse. There are very stringent criteria for acceptance onto a trial and there’s no guarantee that you will meet those criteria and be accepted onto any particular trial. To fi nd out more about clinical trials, visit www.mssociety.org.uk/research or http://clinicaltrials.gov

I was asked to ride a static bike; weights were added at regular intervals, making it harder to cycle



RESEARCHNEWSGilenya to be prescribed on NHS for people with relapsing remitting MS

Gilenya, the fi rst oral treatment for MS, is now available on the NHS for people with highly-active relapsing remitting MS who have failed to respond to beta interferon. In July, NICE, the independent body that decides whether or not treatments should be available on the NHS in England and Wales, confi rmed that the NHS is legally obliged to provide Gilenya to anyone with MS who is eligible. People who are not strictly eligible may also be able to get Gilenya on the NHS if their neurologist thinks they would benefi t from the drug and their local health authority is prepared to fund it. The Northern Ireland Department of Health, Social Services and Public Safety has endorsed NICE’s decision. And in September, the Scottish Medicines Consortium (SMC) also approved Gilenya, which means that it will now be available in Scotland on the same terms as in the rest of the UK. In a separate development, the chair of NICE, Sir Michael Rawlins, claimed recently that some NHS trusts are ‘breaking the law’ by refusing to grant access to some NICE-approved treatments. He urged doctors to ‘name and shame’ trusts that behave in this way. In the last resort, he suggested that patients sue for access to drugs to which they are entitled. The MS Society is working with the Department of Health and other partners to improve and monitor the implementation of guidance. We want information to be available about what is being prescribed, and where, so that we can identify the problems and seek to resolve them. If you are eligible for Gilenya, but are being refused it by your local NHS trust, then please inform our campaigns team by emailing [email protected] or calling 020 8438 0700. You can also tell us by fi lling in the survey at www.surveymonkey.com/s/msstories. You can get a copy of our guide to accessing MS treatments from www.mssociety.org.uk (search for ‘campaigns guide’) or call 020 8438 0799.

What are your top 10 research priorities?

The MS Society is launching a new project to put people affected by MS at the centre of research. We aim to fi nd the top 10 unanswered questions in MS research. People affected by MS, MS professionals and neurologists will identify their priorities for MS research. We hope to gather the unanswered research questions that are important to all of

these groups. This could include any area of MS, from treatments for a particular symptom to support for day-to-day living with MS. This new priority-setting partnership is supported by the James Lind Alliance, an independent, non- profi t organisation that specialises in bringing patients, carers and healthcare professionals together to identify and prioritise unanswered questions. They will guide this work to ensure an unbiased result. We would like to hear from you about the questions that are important to you. To fi nd out more and have your say, see the latest edition of Research Matters, which is enclosed with this issue of MS Matters. If you have opted not to receive Research Matters but would like a copy, please call 020 8438 0799.

My MS, My Needs

Early next month we will be launching ‘My MS, My Needs’, one of our largest-ever surveys, to help us understand how well the UK is meeting the health and social care needs of people with MS. We will be posting a short questionnaire to all of our members who are over 18 and have told us on their membership form that they have MS – that’s around 24,000 people – to ask them if they are able to access the care and support that they need. The questionnaire is just four pages long, and should take 15 to 20 minutes to complete. By submitting your response, you will be contributing vital information to help us understand your MS and your needs. This will allow us to campaign for change and work to develop services that better meet the needs of people with MS. We will be announcing the results in MS Week next year, and as well as a national picture we will analyse the results locally to understand the ‘postcode lottery’ in services for people with MS. This information will be really important in helping us to enhance our understanding of key local issues and our work with local health and social care organisations to improve services locally. Because we want to analyse the results on such a local level, it is really important that as many people respond as possible. This makes our results more accurate, and allows us to make a more persuasive case for change. Everyone’s responses matter – and will be used to support the Society in our work for years to come. So when you receive the questionnaire, please do take a few minutes to share your views and send it back to us. If you have any questions about the project, you can contact the research team at [email protected] or on 020 8438 0822.

Documents

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