104 July/August 2012
The Olympians The torchbearers, the chief, the driver and the swimmer
Clinical trials Wheelchair fashion
Cover photograph of Stephanie Millward
UP FRONT How celebrities help raise awareness of MS
NEWS Jack Osbourne has MS, benefits survey launched, and more
LETTERS There’s more to life than MS, keeping your Blue Badge safe, and more
THE OLYMPIANS We celebrate some of the myriad of MS Society supporters who are involved, one way or another, in the London Games
PEDAL POWER Simon Lord extols the virtues of cycling
FIT FOR PURPOSE Exercise can be beneficial for people with MS. Anthony Stone dusts off his leotard
LOOKING GOOD SITTING DOWN When wheelchair-user Ann Olivier found she had nothing to wear for a glamorous night out, she set up her own designer label
SOCIAL CARE REFORM The government has announced plans to reform the system of social care for elderly and disabled people in England. We look at what this means for you
YOUR SOCIETY The Society’s AGM, the autumn running and cycling programme, travel insurance, and more
RESEARCH How do clinical trials work? We talk to four people in the know. Plus, an update on the new oral treatment, Gilenya, the latest research into childhood MS, and more
STEROIDS AND MS
TALK ABOUT MS MS Helpline 0808 800 8000 (Mon to Fri, 9am–9pm; Sat, 10am–1pm) firstname.lastname@example.org MS Society website forums www.mssociety.org.uk/forum Facebook group www.facebook.com/MSSociety Twitter http://twitter.com/#!/@mssocietyuk
www.mssociety.org.uk MS Matters 104 01
MS Matters is available on CD, audio cassette and in large print. For details, telephone 020 8438 0759. MS Matters is a Multiple Sclerosis Society publication ISSN 1369-8818 © Multiple Sclerosis Society 2012 Individuals or organisations wishing to reproduce, store in a retrieval system or transmit by electronic, mechanical, facsimile or other means any part of this publication should apply for permission to: MS Matters, MS Society, 372 Edgware Road, London NW2 6ND. To receive MS Matters, contact the MS Society Telephone 020 8438 0759 Email email@example.com MS Helpline 0808 800 8000 www.mssociety.org.uk Registered charity nos 1139257 / SC041990. Registered as a company in England and Wales 07451571 Editorial Board Sue Farrington, Hilary Freeman, Jenna Litchfield, Sarah Mehta, Anita Roberts, Anthony Stone
You can’t have failed to notice the massive media interest last month following TV personality Jack Osbourne’s diagnosis with MS. Within hours of the news of the 26-year-old’s diagnosis breaking, we felt the impact, with a tenfold increase in visits to our website, and 40 per cent more enquiries to our helpline. People were seeking information about what MS is and what the symptoms are. We were inundated with media enquiries, which provided an opportunity for us to raise awareness of the condition, highlight the support and information available to people newly diagnosed with MS, and talk about the hope we have that our research may lead to a cure. The sudden intense interest in the condition also provided a platform for many others with MS to describe what it is like to live with this unpredictable condition, on radio, TV, online and in the press. As a result, there were many positives to be taken from the situation, but throughout we remained acutely aware that at the centre of the story was a young man in his mid-20s, trying to come to terms with his diagnosis. We know that an MS diagnosis can be a confusing, scary and traumatic experience – but reliable information and support from others can make a big difference. I’d like to thank Jack for his courage in talking about this difficult time so openly. We are here for him and his family if they need us – as we are for anyone else recently diagnosed with MS.
Editor Colin Richardson Senior Editor Sarah Westlake Design Crescent Lodge, London www.crescentlodge.co.uk For advertising sales, contact Nima Azarian, Ten Alps Media Ltd 020 7878 2367 Printed in England by Warners Midlands plc 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.
From Simon Gillespie Chief Executive of the MS Society www.mssociety.org.uk MS Matters 104 03
Photography: David Shankbone
Disability benefits survey launched
Jack Osbourne has MS Jack Osbourne, 26, son of rock musician Ozzy and talent show judge Sharon, has announced that he has MS. He was diagnosed with relapsing remitting MS earlier this year after he developed a number of symptoms, including partial blindness, numbness in his legs and bladder and bowel problems. The announcement saw a huge increase in visits to the MS Society website. In the first three days after the news broke, there were more than 82,000 visits to the website, including 40,000 in one day – over 10 times the normal daily average.
04 MS Matters 104 www.mssociety.org.uk
The Disability Benefits Consortium, a national coalition of more than 50 charities, including the MS Society, has launched a major survey of the disability benefits system. At the same time, the Society has been pressing MPs and peers to address concerns about the way eligibility for benefits is assessed. Next year, Disability Living Allowance (DLA) will begin to be replaced by a new benefit, Personal Independence Payment (PIP). In the coming years, 46,000 working-age people with MS will need to go through a face-to-face assessment. There are fears that the assessment process for PIP will be based on the Work Capability Assessment (WCA) that is currently used to assess eligibility for Employment and Support Allowance (ESA), the replacement for Incapacity Benefit. The WCA is already proving inadequate in assessing the needs of people with fluctuating conditions such as MS. Many people with MS have been refused ESA at first attempt only to be granted it on appeal (see MS Matters 103, for example). In June, people with MS and representatives of the MS Society and the UK MS Nurses Association attended a meeting of the All Party Parliamentary Group (APPG) for MS to impress their concerns upon MPs and peers. Simon Gillespie, Chief Executive of the MS Society, told the meeting: ‘We want to ensure we learn from these problems [with WCA] so that they’re not replicated for those people who are assessed for PIP.’ APPG member Lord German, who is also the Liberal Democrat co-chair for the Parliamentary Party Committee on Work and Pensions, agreed. ‘We need to be learning the lessons as quickly as they happen,’ he said. ‘We need to be continually reviewing it, improving it and getting it right to ensure we don’t have to wait long term to put right the things that may go wrong.’
The online survey is an opportunity for you to tell us your experiences of benefits assessments
NEWS Now you can have your say. The online survey launched by the Disability Benefits Consortium is an opportunity for you to tell us your experiences of benefits assessments and to let us know your views on benefits cuts and changes and how they affect you. The results will form an important part of our ongoing campaign to reduce the impact of the government’s benefits reforms on people with MS. Please tell us your views by visiting
www.surveymonkey.com/s/disability-benefits. The survey will be open until mid-September. To stay up to date and support our benefits
campaigns, visit www.mssociety.org.uk/ benefitscampaign or sign up for campaign updates at www.mssociety.org.uk/campaignscommunity
Charities condemn government’s social care plans for England The MS Society has joined more than 65 other charities in condemning the government’s decision to put off crucial decisions on future funding of the social care system in England. Last year, the Dilnot review recommended that the amount that elderly and disabled people in England pay for their care be capped at £35,000. But, outlining his plans for reform in early July, Health Secretary Andrew Lansley told MPs that while the government was committed to the principle of a cap on costs, the economic climate meant that cheaper options needed to be explored. He said that a final decision would not be made until the next spending review, which may not take place before 2014. The government’s plans are set out in a White Paper (a discussion document), which includes a number of concrete proposals. A national minimum eligibility threshold is to be introduced in 2015 so that people will have the same access to care wherever they live in England. A deferred loan scheme is also proposed, so that no one is forced to sell their home in order to pay for their care. Instead, people will be given the choice to defer payments for their care, which the government will later recoup – plus interest – from their estate after their death.
The government has also agreed that people who move to a different local authority area can take their existing care package with them. The new local authority will have to meet the previously assessed needs of those people, though they will be entitled to carry out a new assessment later on. Other plans include the development of a new code of conduct and minimum training standards for care workers and the establishment of a national information website. Sue Farrington, the MS Society’s Director of Education and Information, said: ‘The plans signal a step in the right direction to address some of the concerns that we have been raising for years, such as the postcode lottery of care. But many measures remain watered down, and are simply empty rhetoric without a concrete commitment on where the funding will come from to turn this into reality. ‘The failure to have made any real progress towards implementing a new, sustainable funding system, and the blinkered refusal to acknowledge the current funding gap will see thousands of people denied the vital care they need or face devastating costs to pay for it.’ For more, see page 24
Doing sport differently We’ve been asked to point out that the booklet, Doing Sport Differently, that we featured in the last issue (MS Matters 103) is only available free as a download. And it isn’t published by RADAR, as we said, but by Disability Rights UK a new charity formed by a merger of RADAR with two other charities, Disability Alliance and the National Centre for Independent Living. For pricing details for hard copies of Doing Sport Differently, visit http://disabilityrightsuk.org or call 020 7250 3222.
www.mssociety.org.uk MS Matters 104 05
LETTERS WE D O NEEDN’T A BA DGE
More to life than MS The MS Society has written to us several times trying to enrol us in a fundraising campaign to ‘Beat MS’ and, most recently, to ‘fight back against MS’, including the offer of a badge with the same slogan. These campaigns, with their illustrations of people with MS seemingly having to spend all their time fighting the disease, remind us of the time in the 1980s when those diagnosed with MS were faced with MS Society adverts showing people with MS having parts of their bodies ripped off – a frightening prospect. We like the way that the MS Society has changed since then, involving those with MS in running the Society and its branches, but we would appreciate more emphasis on the fact that we do things with our lives other than carrying the disease around with us. We don’t need a badge. Nick Lewis and Peter Draper West Oxfordshire branch
Flights of fancy The conversation about travelling by air with a wheelchair, sparked by Josephine and Paul Heath’s bad experience with Ryanair (MS Matters 102), continues. Annette Waxman and Margaret Hutchinson wrote to say that their experiences of flying with Ryanair were wholly positive. Annette writes of a flight to Greece with Ryanair: ‘I have secondary progressive MS but can very slowly walk up the stairs with great effort. On arrival at Stansted, my husband took me to get the wheelchair assistance and they were great.
06 MS Matters 104 www.mssociety.org.uk
A very kind gentleman took us to check in the luggage, then on through Customs and left us at a cafe near the gate. When it was time to board, he took me directly to the back stairs of the plane while all the other passengers went up the front of the plane. ‘When I got on the plane, our seats were reserved at the back. On arrival on Greece it was even better – the wheelchair was brought onto the plane and my husband and I were taken off by lift. On the return flight I had the same great service. I really cannot fault them; in fact, it was the best service I have ever had.’ Margaret, who lives in Doncaster, writes: ‘I myself have MS and use a wheelchair and have flown quite a few times with Ryanair from Stansted to Italy to visit my daughter, and I have never had any problem. They have a lift that takes me right up to the side of the plane, then push my wheelchair onto the plane near to the front seat and help me transfer onto my seat. It’s the same at the other end: I wait till everyone has got off, then they take me off. It’s also the same when I return; no problems at all.’ Claudia Schmid emails to say: ‘Reading about the horrible experiences other readers have reported when flying with Ryanair, I feel that I’d like to praise Easyjet, who have always been very helpful to me when flying with my walker/rollator to Germany. Never a nasty word or gesture, only kind and helpful staff on my many flights with them.’ Mrs Pamela Myatt from Bridlington is critical of budget airline Jet2. She writes: ‘My husband has primary progressive MS and needs wheelchair assistance to board an aircraft. He can walk a short distance but suffers badly from fatigue. Two weeks before the booked holiday to Tenerife, we received a questionnaire from Jet2, to be filled in by a doctor, that asked things like: “Will he be distressing to other passengers?” and “Is he fit to fly?” I thought it was highly degrading for him, and intrusive. ‘Obviously, if my husband wasn’t fit to fly we wouldn’t have gone. Plus, it cost us £20 to have the form signed.’
LETTERS Money for old dope
Get In Touch
In reply to Martin Lennon’s letter regarding cannabis (MS Matters 103), I wholeheartedly agree with the points raised. Maybe the MS Society could fund a clinical study into the efficacy of wholeplant cannabis oil. The pharmacological companies will not fund such trials as cannabis is an ‘orphan drug’, being unpatentable and therefore of no profitable interest.
‘Get In Touch’ is the MS Matters personal ads service. It fell into abeyance several years ago as the number of ads submitted by readers dwindled to zero. However, we have had an ad submitted, so perhaps it’s time for a revival. It’s up to you to decide. To reply to a ‘Get In Touch’ personal ad, please write (quoting the relevant Box number) to: Get in Touch, MS Matters, MS Society, 372 Edgware Road, London NW2 6ND. We will then forward your reply to the person who placed the ad. In your reply, you do not need to give your home address – a phone number or email address will suffice. If you decide to meet up with someone for the first time, always tell your family or friends where you are going and meet your correspondent in a public place. Although there is rarely any reason to worry, most people you meet will appreciate the need to take care.
Darren Eardley, by email See Research news, page 35
Keeping your Blue Badge safe and secure Judith Seymour wrote (‘Open-top cars and blue badges’, MS Matters 103) of her worry that her Blue Badge might be stolen if she left it on the dashboard of her open-top car. Several readers wrote to offer their solutions. ‘Barbara MS’ and David Garrad emailed to suggest the waterproof Blue Badge holder sold by the National Association for Bikers with a Disability (NABD), which can be padlocked to a motorbike. Visit www.nabd.org.uk or call 0844 415 4849 for more information. Peter House writes: ‘I addressed this problem myself and also the theft of the car, by the use of a Disklok steering-wheel lock (silver model) to which I had had welded a 30mm heavy gauge nut which allowed a cable lock to be threaded through, connecting to a steel Blue Badge protector. The protector can then be positioned as required on the dashboard.’ Alan Turner refers Judith to the Blue Badge protectors supplied by www.parkingforblue badges.com (telephone: 0844 847 0875 or 0844 847 0876), as does Laurie Cockram. Roger Cox takes a different tack altogether: ‘It is well known that Blue Badge theft is a risk we each run when we display it, not forgetting also the repair cost to our cars with a smashed window or more. To reduce this risk, I suggest Ms Seymour parks only in an obviously safe place when displaying her Blue Badge or, when in a suspect car park or meter area, pay the appropriate parking fee rather than display the Badge.’
My name is Andrew from Norfolk. I have progressive MS and walk with a stick. I’m divorced, with two sons. I would like to meet a female for friendship, possibly more. I no longer drive. I have a good sense of humour, enjoy drawing, having a laugh, watching a good film. I’m an honest guy. I miss the company of being with someone. So if you’d like to be in touch, please do so – it would be lovely to hear from you. BOX MSM104
Stories from the Helpline We should have made it clear in the last issue (MS Matters 103) that the stories from the MS Helpline told in the feature, ‘What are you talking about?’, were composite stories that reflected the typical calls received by the Helpline. They were not examples of any one individual’s call. Apologies for the omission.
Put your thoughts on paper and send them to MS Matters, 372 Edgware Road, London NW2 6ND or email msmatters@ mssociety.org.uk www.mssociety.org.uk MS Matters 104 07
In case you hadn’t noticed, London is hosting the Olympic and Paralympic Games this summer. To mark this special occasion, MS Matters celebrates some of those who are involved in one way or another – so prepare to meet a bevy of remarkable people with MS, a brace of dedicated carers and a team of MS Society volunteers and fundraisers.
Lighting the way As MS Matters went to press, the Olympic Flame was completing its 70-day, 8,000-mile journey around the UK, from Land’s End to the Olympic Stadium in east London. Here we showcase some of the 8,000 torchbearers who have a close connection with MS. A flame has burned during the Olympic Games since ancient times. It symbolises the theft of fire from the gods by the titan Prometheus. The torch relay, however, is a more modern invention, dating back to the controversial 1936 Games in Berlin. For the 2012 Games, the Olympic Flame was lit from the sun’s rays at the Temple of Hera in Olympia, Greece, on 10 May. It arrived on UK soil on 18 May and was delivered into the hands of footballer David Beckham, who lit a torch and cauldron at Royal Naval Air Station Culdrose, near Helston in Cornwall. The next day, the torch began the relay in Land’s End. The lighting of the cauldron at the Olympic Stadium in London on 27 July by the 8,000th torch-bearer marks the official opening of the 2012 Games. Well over 20 people with some sort of connection to MS have been chosen as torch-bearers. We hope we haven’t missed any of you out – if we have, please accept our apologies. We take our hat off to you all.
26 May Treherbert
24 May Worcester
Danielle Russell, 12, helps care for her uncle
Paul Dickenson, 62, MS Society volunteer
19 May St Austell
Janet McCulley, 72, helped set up free exercise classes for people with MS and other conditions
22 May Glastonbury
Jason Vickers, 43, has raised more than £11,000 for the Society
15 July St Peter Port
Dil Diligent, 56, has a close friend who has MS
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GET ACTIVE 3 June Larne
8 June Port Glasgow
Roderick Conlon, 34, is a primary carer for his aunt
Ryan McLaughlin, 17, helps care for his mother and campaigns for more research on the links between vitamin D and MS
1 June Huyton
Stephanie Millward, 30, Paralympic swimmer (see page 10)
30 May Shrewsbury
13 June Milnathort
14 June Loanhead
David Johnston, 36, helped develop a programme of exercises for people with MS
8 June Glasgow
Elaine Green, 69, has MS
David Anderson, 19, has MS, as does his mother
15 June Wallsend 14 June Edinburgh
Louisa Morley, 70, active volunteer for her local MS Society branch for 34 years
Sally Hyder, 50, has MS and is a wheelchair-user
30 June Lichfield
14 June Milton Bridge
James Coke, 47, (see photo) lives in Parsons Green, west London. He carried the torch through Lichfield on 30 June, propelling himself with a hand-cycle attached to his wheelchair. He was diagnosed with primary progressive MS in 1997, having had symptoms since 1984. He was chosen to carry the torch for his charity work for Hammersmith and Fulham Action on Disability. In 2007, he organised the MS Walk, which took seven people with MS (‘The MS-nificent 7’) from Edinburgh to London in 31 days, raising over £30k for MS charities. One of the seven is another torch-bearer, Anne Godwin.
Phil Craze, 37, MS Society fundraiser
Sarah Thomas, 18, (see photo) carried the torch in Shrewsbury on 30 May. She is a carer for her mum, who was diagnosed with MS when Sarah was two. She also helps care for her dad. Sarah has campaigned with the MS Society for recognition of the needs of young carers. We interviewed Sarah in MS Matters 89 (January/February 2010). 30 June Wolverhampton
25 July London Borough of Harrow
Gavin Ellis, 35, took part in the Great North Run to raise money for the Society
Jai Padhiar, 16, raised £12,000 for the MS Society by completing a 10km run
9 July Cowley
26 July City of Westminster
8 July Bedford
Anne Godwin, 52, has MS and raises funds for the Society and breast cancer charities
5 July Melton
Wendy Hughes, 52, from Stowmarket is the full-time carer for her husband, Michael
25 July London Borough of Brent
23 July London Borough of Wandsworth
Marjorie Hurwitz-Bremner, 63, has raised thousands of pounds for the MS Society and other charities
Melanie Oliveira Da Silva, 35, has MS
Sally Sheward, 56, principal carer for her husband. Has also set up two support groups for people with MS
Taylor Amerman, 23, regularly runs half marathons in honour of her father, who has MS
Laura Rennis, 27, has MS
Jodie Evans, 25, has MS
16 July Petersfield
28 June Nottingham
19 July Upstreet
Ray Fisk, 66, longstanding MS Society volunteer
23 July London Borough of Lewisham
Jaime Minter-Green, 33, raises funds for the MS Society via her own charity. Her mother has MS
19 July St Lawrence
Katie Thomas, 16, MS Society fundraiser. Helps care for her step-father, who has MS
www.mssociety.org.uk MS Matters 104 09
Back in the sw
Stephanie Millward, 30, from Swansea is a class nine Paralympic swimmer. She will be competing in the 400m freestyle, 100m backstroke and 100m butterfly events. Swimmers are graded according to the impact of their physical impairment, with those in class one being most affected and those in class 10 the least affected. Stephanie talks to Sarah Westlake.
10 MS Matters 104 www.mssociety.org.uk
GET ACTIVE ‘I set a new British record for the 100 metres backstroke when I was 15, so obviously I was very excited: the Olympics were in my grasp. But when I was 17, I got sick, I went blind three times and paralysed once. I was diagnosed with MS and my dreams kind of died, they all came crashing down. ‘I went through a very bad time, but eventually returned to competitive swimming at the 2008 Paralympic Games in Beijing. I thought that the Paralympics would be easy because I was so good before, but it’s not. I’m glad it isn’t. The fact that I have to fight to get back in, it keeps the dream alive; it makes the aim and the goal something to really fight for.’
How did you get through the bad times? ‘I was asked to teach someone how to swim. His name was Adrian McHugh and we got along; he was a good student. Now, we’re engaged to be married. He’s been an incredible source of strength to me in my life. Between him and getting back in the pool, that’s what kept me going. Also, my mum: I’ve never ever seen her cry about anything to do with my MS. She’s stayed so strong for me, and I couldn’t have done it without her. ‘I don’t have time to look at the MS Society website now, but when I was first diagnosed I looked at it all the time. I used the information; I needed it. I was able to get support from people who understood what I was going through.’
How does MS affect you? ‘The illness affects my eyesight quite badly, and my ability to walk sometimes, and my coordination. I get quite a bit of pain in my left hand, which can obviously be annoying, and I suffer from fatigue. ‘I came off Rebif four years ago. I made a conscious decision to do so as I didn’t want to be fussing around with injections and drugs in the run up to and during the Games. ‘I would have been allowed to compete while taking it, but I just came off it. I didn’t know if it would help but it has definitely been a change for the better. I’m really glad I did it.’
‘I train up to six hours a day. I listen to music when I train. I think my race through in my head hundreds of times. By the time I get in the water, I’ve swum the race thousands of times, every stroke, in my head. Every race is different. Each stroke requires different techniques and thought processes – when you’re really going to go for it, when to make the turn. My eyesight is affected, so I often can’t see when the turn comes, so I have to take that into consideration.’
What else are you up to? ‘I’ve been helping 10 young non-swimmers from Swansea to learn to swim and gain confidence in the water. And for the past four years, I’ve been writing my autobiography. It’s almost done apart from one chapter, which is about what it was like going to Buckingham Palace after the Beijing Games. It was so surreal. You see all these people that you’ve only ever seen on the telly – the Queen and Camilla – and you just think this is wrong, that you shouldn’t be there!’
What are your hopes for the Games? ‘Maybe I’ll set new personal best for myself, break a record for myself, for the country, or maybe even the world. We’ll see. ‘I’m not scared yet. I’ve been training hard to prepare for this all my life. I’ll probably be stupidly nervous the closer it gets. This is the biggest Games EVER. To swim in the UK is massive – it’s that extra buzz. ‘I’ve been training for this moment all my life. To get a medal, would be so fantastic – I’d come into the MS Society and say, “Yes! Look, I won a medal. Take that, MS!”’ What advice would you give to someone newly diagnosed with MS? ‘Don’t stop! Don’t let it finish your life or even hinder it at all. Somehow try and come to terms with the fact that your body has changed and you have to do some things differently now. Realise that your body may be being held up, but you can still realise your dreams.’
How are you coping with the pressure? Paralympic swimming competition ‘I’m quite well organised. I think that as long as I have enough time to do everything, then it’s all meant to happen. That’s the key: organising my time. Of course, I have bad days; sometimes, awful days. Finding out I had MS was terrible. But I do believe that it’s all going to work out perfectly in the end.
30 August to 8 September, Aquatics Centre, Olympic Park, Stratford, east London.
continues www.mssociety.org.uk MS Matters 104 11
A team player Janet Smith, 47, medal-winning hammer thrower and manager of the Athlete Medical Scheme for Team GB, will be at the centre of things during the Olympic Games. Janet talks to Colin Richardson.
Janet Smith has been throwing weights around for more than 20 years. It was in 1991 that she first hurled a hammer for the sheer hell of it. She had just moved to Windsor and had joined the local athletics club. ‘I was a discus thrower,’ she says, ‘and someone came to help me, and he was one of our top hammer throwers at the time and said I should try the hammer. So I gave it a go and it sort of fitted. I would find it hard to give it up now.’ Women’s hammer-throwing is a relative newcomer on the international athletics scene, not being officially recognised until the early 1990s, so Janet was in at the beginning. Her best-ever throw was 50 metres, 62 centimetres, which seems a heck of a distance to chuck a 4kg lump of metal, but Janet is modest about her achievement. ‘For the top girls, 70 metres is the benchmark now. The qualifying standard for the Olympics was 71 metres 50, so I’m slightly off,’ she laughs. ‘I was ranked 10th in the UK in 1997 – that was my best year. The world record’s about 79 metres now.’ Janet mostly competes in Masters competitions these days, which she jokingly describes as being for ‘anybody that’s old; over 35. You’re in five-year age groups, so I compete with people aged between 45 and 49. At the world championships in California last year, I won the bronze for the weight throw, which is the heavy hammer, which weighs nine kilos. I still hold the record for heavy hammer at 14 metres 40, which I set in the 40-45 class in 2006 in Poznan, Poland at the European Championships.’ Janet was formally diagnosed with MS 11 years ago, following an attack of optic neuritis, but, as is often the case, she’d noticed strange symptoms several years earlier. ‘In 1998, whenever I exercised, my sight went blurry and no one knew what it was. But that just went. In 1999, I got pins and needles down my back whenever I bent down and then I lost all feeling from the chest downwards. They thought it might be transverse myelitis [a condition similar to MS that usually consists of only one episode, from which most people make a partial or complete recovery]. I had some MRIs done then, but it wasn’t until 2001 when I lost the sight in my left eye due to optic neuritis that they said, yes, it is MS. I pretty much got the sight back, though it’s never been quite back to normal.’ 12 MS Matters 104 www.mssociety.org.uk
Photography: Sharron Wallace
Janet hasn’t had a relapse for 11 years. She sees an MS nurse once a year, who, last time they met, mentioned the possibility that her MS might be ‘benign’. However, Janet is taking nothing for granted. ‘I know people who have gone 15 years without anything,’ she says, ‘and then had a relapse.’ The onset of MS only briefly interrupted Janet’s training. ‘When I had the numbness, I couldn’t throw,’ she says. ‘But when I lost my sight, I still threw. I could do it with my eyes shut; I’ve been throwing long enough.’ And she shows no signs of letting up. ‘I still run, she says. ‘Me and my friend did a half marathon last year and we raised £1,700 between us. I’m doing the Great South Run again this year, for the MS Society.’ When she’s not training or competing or volunteering for her local MS Society branch, Janet also has a job to do. ‘I run the Athlete Medical Scheme for Team GB,’ she says, ‘which I’ve been doing for nearly nine years now. All the requests for treatment from the athletes come into me, after they’ve been referred by a doctor, and I sort out the paperwork so that they get the treatment as quickly as possible. ‘During the Games, I’ll be living in Mile End at Queen Mary’s University – they’ve got about 250 beds there. My office is on the ninth floor in Team GB house, a big office block in Westfield, close to the Olympic Park.’ But it won’t all be work, will it? ‘Oh, no. I’ve got tickets to go and see the hammer-throwing.’
Driving ambition David Robinson is a Countryside Ranger, Scout leader, dedicated MS Society branch volunteer, and now an official driver for the London 2012 Games. He lives in Peterborough and will celebrate his 45th birthday during the Games.
the all-important email offering me a place at the Olympic Games as a T3 Driver with the Transport Team. Nearly as soon as my dyslexic eyes had read the email, I said, “YES!” ‘Since then I have done many days training and I have also been invited to be part of the Paralympic Transport Team. I will be based at the Olympic Fleet Depot, which is inside the Olympic Park, and I will be chauffeuring anyone from elite athletes to catering staff. Accommodation during the Games will be my tent, which I’ll be pitching in Gilwell Park on the edge of Epping Forest, just over ten miles from the Olympic Park in Stratford. My main means of transport will be a cycle to get me in and out of London. ‘I have a ticket to watch one of the technical rehearsals for the opening ceremony. I’m also hoping to be able to get down to The Mall to see the final of the men’s cycle road race. If Mark Cavendish wins gold for Great Britain, that would be the icing on the cake for me.’
er ul Franks/Pet
raph borough Teleg
‘A typical month volunteering for the branch [Peterborough and District] means me driving people to and from several evening and afternoon meetings. I also help with flag days and other fundraising activities and have even been on holiday with the branch. Other duties have involved taking buses to get tested and serviced. ‘Back in 2005, while London was still bidding to host the Games, I had registered on the website to be involved. Well, when we won the bid, I re-registered my interest. I told my boss about my idea and asked if I could start saving some holiday up. ‘In September 2010, I read on the web that applications were open for anyone interested in being a volunteer and I just applied. It took me two nights to do, and I submitted my paperwork online and crossed my fingers. ‘On 7 July, 2011, I had my interview in London. It rained several times but that did not matter: I got a good feeling. Then, in late October, I received
continues www.mssociety.org.uk MS Matters 104 13
For your information
Olympic Games 27 July to 12 August, 2012
Although the Olympic Games date back several thousand years to Ancient Greece, the modern Games are a more recent invention. The first official Summer Olympic Games were held in Athens, Greece in 1896. The 2012 London Games are the 30th modern Olympiad. Television coverage of the Games will be provided by the BBC. The London 2012 website is at www.london2012.com. For general enquiries about the Olympic or Paralympic Games, call 0845 267 2012.
Paralympic Games 29 August to 9 September, 2012
The forerunner of the modern Paralympic Games was a sports competition for British World War II veterans with spinal injuries, which took place at Stoke Mandeville Hospital near Aylesbury in Buckinghamshire in 1948, the last time the Olympic Games were held in London. The first official Summer Paralympic Games were held in Rome in 1960. They were no longer restricted to war veterans, although athletes had to be wheelchair-users. The Games were opened up to athletes with other disabilities in 1976 when they took place in Toronto, Canada. There are now 10 eligible ‘primary impairment’ categories recognised by the International Paralympic Committee. In addition, each sport grades competitors according to the severity of their impairment. The Winter Paralympics were inaugurated in 1976. The 2012 London Games are the 14th Summer Paralympic Games. Television coverage is on Channel 4. The Paralympic Games website is at www.london2012.com/ paralympics. The International Paralympic Committee website is at www.paralympic.org 14 MS Matters 104 www.mssociety.org.uk
The 24-hour Paralympic Torch Relay begins at Stoke Mandeville on 28 August. A Flame will be lit in each of London, Belfast, Edinburgh and Cardiff. These four Flames will then be united at the Paralympic Flame Lighting Ceremony at Stoke Mandeville, the spiritual home of the Paralympic Movement, to create the London 2012 Paralympic Flame. 580 of the selected torchbearers will carry the Paralympic Flame as part of one of the teams of five who will take it on the 24-hour overnight journey from Stoke Mandeville to the Olympic Stadium for the Opening Ceremony of the London 2012 Paralympic Games. The remaining 40 torchbearers will carry the Flame at the three Flame Festivals and at the Paralympic Flame Lighting Ceremony. The names of the torchbearers were being announced as MS Matters went to press. To find out more, visit www.london2012.com/paralympics/torch-relay Passion for Paralympics is an exhibition designed by the International Paralympic Committee and Otto Bock, the official Prosthetic, Orthotic and Wheelchair Technical Service Provider for the London 2012 Paralympic Games. On display is the state-of-the-art technology that enables Paralympians to compete, including hand cycles and running blades, as well as technology that helps amputees with everyday life. The exhibition also includes a history of the Paralympic Games, from its beginnings in Stoke Mandeville. It is at London’s Westfield shopping centre (020 3371 2300) from 27 July to 12 August and then at the Prestige Pavilion in the Olympic Park (Paralympic Games ticket holders only). Visit http://passion.ottobock. com/exhibition for more details. InclusiveLondon.com is a web portal providing details of access and services for disabled and older people as well as people travelling with young children and buggies in London during the Games. You can search for Underground stations, Olympic venues, pubs and restaurants, banks, public toilets and much else besides and find out what accessibility features they offer. Go to www.inclusivelondon.com The Transport for London site enables you to check on any travel disruptions, to look up bus and tube maps and generally plan your route. The site also has tips on travelling in the capital during the Games. Visit www.tfl.gov.uk. For up-to-date travel information, you can also call 0843 222 1234.
Pedal power Simon Lord’s MS meant he had to hang up his cycle clips. But now he’s back in the saddle, thanks to power-assisted cycling. Simon, 54, is married with two grown-up children. He is medically retired and lives in Todmorden, West Yorkshire. Simon talks to Hilary Freeman. ‘I was always a very sporty person, as well as a keen mountain biker. I also took part in motorcycle rallies all over the UK and Europe, before my MS took away the sensation in my feet, which meant I couldn’t feel the brakes, so I had to stop. But I carried on cycling until one black day, about six years ago, when I was riding by my local canal, and I suddenly found myself without the power in my legs to get up a hill. I had to get off the bike and push it home. ‘After that, I hung my bike up on the rack and thought, that’s it, I’ll never cycle again. I sold my mountain bike and resigned myself to being less active forever. And then, two years later, I was watching the Gadget Show on TV when I saw a feature about a modern, lightweight, battery-assisted bike. I got in touch with the manufacturers and went to try it. It was fantastic, just what I needed. The first time I rode it was like being a kid learning to ride all over again – that moment when your dad takes the stabilisers off. The motor is a bit like
a dad’s supportive hand: it keeps up the bike’s momentum, allowing me to continue pedalling despite the weakness in my right leg. ‘The bike cost me £850 and I bought it with help from my local MS Society in Halifax. I modified the pedals by attaching a small cage to the right one, and also modified my right shoe, so my foot doesn’t slip out. ‘I’ve since bought another, more powerful model. My bikes have been everywhere with me: on big journeys and short ones, in all weather conditions. The only thing I have to bear in mind is that the battery needs charging, so I need to make sure that I always have enough power to get back. I’ve done several charity cycle rides, including a 29-mile one over the Pennines. I’ve raised a total of £6,000 in sponsorship and I’ve been able to pay the MS Society back for my bikes. ‘Motor-assisted bikes only go up to a maximum of 15 miles an hour and the motor cuts off when you apply the brakes. I can’t recommend them highly enough to people with MS who enjoy cycling, which is why I took my bikes to display at MS Life this year. I want to be an ambassador for cycling for other people with MS. ‘Power-assisted bikes enable people with reduced movement or muscle strength to continue cycling, giving them much needed freedom and independence and a sense of wellbeing. Cycling is also very healthy: good for the joints, the muscles, the bones, the metabolism and the heart and lungs, not to mention helping you get fresh air and vitamin D in the summer months. ‘My physiotherapist says that since I’ve been cycling my muscles have grown again by at least a centimetre and I feel less generally fatigued. Instead of getting stiffer, like most people I know with MS, I have become more mobile. (I just have to be careful not to overdo it if I’m feeling tired, or I might fall off!) Best of all, when I’m cycling, I don’t feel disabled any more. I feel like the normal, old me. It’s empowering.’ Simon can be contacted at firstname.lastname@example.org
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Taking regular exercise helps keep you fit and strong and can improve your mood. And you don’t have to be an Olympian to take part, writes Anthony Stone. Images of super-fit athletes are everywhere this summer. Sculptured torsos and ripped abs stare back from advertising hoardings, newspapers and television screens. It almost makes me want to go to the gym and lay off the chocolate digestives. But why bother? Well, because it’s worth it. There is some evidence to suggest that regular exercise can: improve the overall health of people with milder MS; help people with more severe MS to stay as
mobile and active as possible; improve walking mobility in people with MS; help some people manage their MS symptoms,
such as fatigue, muscle stiffness, balance difficulties, anxiety, depression, and bladder and bowel problems. Make a plan Before you start a new exercise regime, discuss your plans with your GP, physio or fitness adviser. Be sure that what you do is safe. Start off slowly, warm up and cool down. Gradually increase the tempo until you find what works for you. For some people this might mean working up a sweat in the gym or on the playing fields. But for many others it will take a more gentle approach. Just because you are not weight-lifting, rowing or training for a marathon does not mean you cannot achieve real benefits.
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The key is finding activities that suit you. Make exercise part of your daily routine and stick with it. Exercise can help with weight control, too, especially when combined with a healthy, well-balanced diet. Set yourself realistic targets. Be aware of your own fatigue levels, but don’t let that stop you from starting. Fatigue – as opposed to feeling tired – is one of the most common MS symptoms and the reason often given for opting out. You have to strike a balance. MS can help improve your strength, fitness and mood, which in turn might help you manage your fatigue. Be gentle with yourself. Remember, a little and often is better than going for broke. Always listen to your body and be alert to its signals. Over time, you’ll learn when to push yourself and when to take it easy. Your physiotherapist or fitness instructor can assess your capabilities and devise a personalised programme of exercise and may include: Exercises to strengthen muscles and bones. This
can involve lifting and moving small weights or using rubber resistance bands of different strengths. It’s not strictly in the Olympic spirit, but you can do this sort of exercise in front of the TV. Aerobic exercises, such as cycling, running or
rowing. The key is to maintain a moderate level for at least 20 minutes which will gently raise the heart rate. Stretching helps keep muscles supple and relaxed.
Yoga and pilates can be done sitting down.
MANAGING MS Some people find MS limits their range of
movement and joints become restricted through lack of use. Range-of-motion exercises involve moving joints so that they go through as full a range of movement as possible. Typically this sort of exercise involves rolling your neck or moving arms, legs, wrists and ankles in wide-reaching circular patterns. It’s always best if a physio can advise and monitor.
There’s a range of gym equipment that builds cardiovascular fitness and strength. Rowing machines work well. Even if you cannot put your feet in the stirrups, you can straddle the machine and pull the cord. For balance and safety concerns, always check with a physio or fitness instructor first. Assisted cycling machines help circulation, stamina and strength. Even if your legs are quite If you spend a lot of time in a wheelchair you affected, the motors will support the motion and may find it difficult to stretch. Your physio or carer can be set to give you a little or a lot of assistance. can help you do this by supporting your limbs Stationary powered pedal machines can be used as you go through the exercises. This is called at home, sitting in front of the TV. Some machines passive stretching. also have assisted hand-cycling features, so that you can work your upper body even if you have The simple things weakness in your hands or arms. The good thing about all this technology is that it records how well When you are affected by MS, it is often the simple you have done. You have something to measure things, such as standing up, walking and sitting your progress against. up straight, that can be the most difficult. Posture Many gyms and leisure centres are fully accessible exercises help keep your feet, knees, pelvis, to disabled people and have suitable equipment shoulders and head properly aligned to reduce available. However, some are not. Or it may be that strain on the muscles and bones in the body. This you don’t like going to the gym or don’t live near to involves strengthening your core muscles around one. In that case, you may want to consider buying the back, chest and stomach. You don’t need a an exercise machine to use at home. Before you six-pack, but every little bit of power gives support do, it’s a good idea to talk to your physiotherapist, to the body and helps when standing up and MS nurse or doctor to make sure that the machine sitting down. you have in mind is suitable for you. If you can, Our bones need weight-bearing exercise to stay ‘try before you buy’ – many suppliers offer a free strong. Without this kind of exercise, the risk of demonstration in your home. Give yourself time to osteoporosis increases. Long courses of steroids think before you commit yourself to a purchase; also increase the risk. So the more time you spend don’t be pressured into signing up right away. on your feet, perhaps supported by a standing frame, the better. If your physiotherapist does advise that you should spend time strapped to a standing frame, try playing catch – it’s as good a way to pass the time as any.
My legs are paralysed and I have limited movement in my arms. I swim like a brick.
However, I have a buoyancy aid – a sort of rubber ring waistcoat. It means I can float and splash about. I feel the benefit for days afterwards
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MANAGING MS Multiple strategies Having MS means that you may need to adapt how you exercise. Exercise can raise the body’s temperature and this may make existing MS symptoms feel temporarily worse. This can be unnerving but need not be a reason to avoid exercise. When I was still mobile I used to go for a gentle jog. Often this affected my eyesight. The double vision lasted until I cooled down. This type of exacerbation is known as ‘Uhthoff’s phenomenon’ and probably occurs because heat makes it harder for messages to pass along affected nerves in the brain or spinal cord. Break up exercise sessions into smaller sections to keep you cool. Keep hydrated with cool drinks. Taking a cool bath or shower afterwards can help. It’s nearly always more fun to exercise in a group. You will find that being with people who have similar challenges to your own can be a great support. Your local MS Society branch may organise exercise classes and other activities, such as physiotherapy. Beating boredom One of the most common reasons people give for not exercising is the perception that it is boring. There are many good DVDs promoting exercise. You can do the exercises sitting, standing or lying down. You can get exercise without moving off your sofa. The Nintendo Wii games console brings the Olympics to you. Probably not in the shape that Usain Bolt would recognise, but nevertheless it will get you active. If you can’t move your legs you can still play by sitting on the floor. Dare to be different Dare yourself to try something new. Horse riding is fantastic exercise. It is the most fun you can have sitting down. To the uninitiated, it looks like you are passively sitting on the back of a horse. What you do not see is that your muscles, especially your core muscles, are performing all sorts of amazing gymnastics just to keep you in the saddle. It is brilliant for your lower legs too. Swimming is wonderful exercise. The water supports you, so even if you are very affected you
can still give it a go. My legs are paralysed and I have limited movement in my arms. I swim like a brick. However, I have a buoyancy aid – a sort of rubber ring waistcoat. It means I can float and splash about. I have used it in the sea and in swimming pools. I feel the benefit for days afterwards. Some people find swimming in water below 29 degrees Celsius works best. Many swimming pools have facilities for disabled people, including pool-side hoists, and some run classes or sessions specifically for disabled swimmers. Hydrotherapy sessions may also be on offer. Try hand-cycling. Many models come with electric motors and the power means you can go crosscountry. It gives a great sense of freedom and gets your blood pumping. You can’t beat exercising in the fresh air. Exercise your vocal chords. Try laughter yoga, as demonstrated at this year’s MS Life. Or go to a football match and scream your head off. Not sure it really qualifies as exercise but it is a great way to let off steam. Sometimes with MS there is a lot of pressure and no release valve. If there’s a gold medal for shouting encouragement from the sidelines and waving arms about then I am on a podium finish. Further information Physiotherapy – your GP, neurologist or MS nurse can refer you to an NHS physiotherapist. Some MS Society branches organise physiotherapy sessions for their members. Some MS National Therapy Centres (MSNTC) and MS Therapy Centres Scotland offer physiotherapy clinics, too. For details, visit www.msntc.org.uk or call 0845 367 0977 (MSNTC) or go to www.mstherapycentres.org.uk or phone 01738 840 357 (Scotland). You may want to pay for the services of a private physiotherapist. The Chartered Society of Physiotherapy has details of registered physiotherapists, including those specialising in neurological conditions such as MS – visit www.csp.org.uk or call 020 7306 6666. The Riding for the Disabled Association runs more than 500 groups around the UK. You can find the one closest to you via their website at www.rda.org.uk or by calling 0845 658 1082.
Dare yourself to try something new
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MANAGING MS The MS Trust has devised a series of Exercises for people with MS, which can be viewed online at www.mstrust.org.uk Gym accessibility: the charity Leonard Cheshire Disability is asking disabled people to survey their local gym or swimming pool to assess how accessible they are. The results of the survey will be published online and will inform a report to be published in September. The ‘Exercise Your Right’ survey forms can be downloaded from www.actionforaccess.org/gyms The English Federation of Disability Sport website is at www.efds.co.uk or you can contact them on 01509 227750. Disability Sport Northern Ireland can be contacted via www.dsni. co.uk/cms or on 028 9038 7062. Scottish Disability Sport is at www.scottishdisabilitysport. com/sds or call 0131 317 1130. Disability Sport Wales (Chwaraeon Anabledd Cymru) is at www.disabilitysportwales.com or phone 0845 846 0021.
What the MS Society is doing The MS Society is funding a three-year study by Professor John Saxton at the University of East Anglia to develop an exercise programme designed specifically for people with MS. It will be trying to answer who benefits most, how much exercise is helpful and what types of exercise are recommended. This programme will include practical strategies and tools to help people with MS to stick to their exercise routine. Wheelchair exercise: the MS Society recently funded a three-month clinical trial of 30 people with MS who use wheelchairs and looked at the impact that pilates has on posture, pain, and quality of life. The majority of the participants expressed a desire to continue with attending pilates classes. ‘Whoever came up with the idea of doing this,’ said one, ‘it was a very good idea, it made you see that although you’re in a wheelchair, you can still do exercise.’ The promising results from this study will inform further research about the benefits of pilates. The Nintendo Wii is a computer games console that can be controlled by gestures – so you can, for example, ‘play tennis’ by waving your
arms around. The MS Society is funding the Mii-vitaliSe Study at Poole Hospital NHS Foundation Trust to test the safety and feasibility of using the Nintendo Wii by people with MS. Training the trainers: the MS Society and Oxford Brookes University have devised a programme for fitness instructors and healthcare professionals called Neuro 4 exercise rehabilitation. It is a distance-learning course in exercise rehabilitation for people with long-term neurological conditions, including MS. More details are available at www.mssociety.org.uk, or contact the programme administrator, Ginny Smith, on email@example.com or 01865 482582. Exercise and Physiotherapy (MS Essentials 21), Posture and movement 1 – an introduction and Posture and movement 2 – moving well with MS are free publications from the MS Society. Download from www.mssociety.org.uk or call 020 8438 0799 to obtain copies. Exercising with MS is a DVD produced by the MS Society and presented by former Olympic gold medallist Sally Gunnell OBE. You can view excerpts on the MS Society website at www.mssociety. org.uk. The DVD is available free from the website or by calling 020 8438 0799. The MS Society library has a number of exercise DVDs available for loan, including: Move it for MS! The fun way to exercise
with Mr Motivator. Pathways: exercise video for people with limited
mobility. Yoga with Sue Lee. Four yoga routines (DVDs)
designed to loosen the entire body and improve posture and breath. There are also a number of exercises online at www.yoga4pwms.co.uk To borrow any of these DVDs or any of the library’s books on exercise for people with MS, visit www.mssociety.org.uk/library (where you can also browse the full library catalogue) or contact the librarian at firstname.lastname@example.org or by calling 020 8438 0799. Many MS Society branches organise exercise classes or physiotherapy sessions. To find your local branch, visit www.mssociety.org.uk or call 020 8438 0799.
For more information about all the research funded by the MS Society, visit www.mssociety.org.uk/ research or call 020 8438 0799.
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If you are a wheelchair-user, finding suitable clothes isnâ€™t always easy. Finding clothes that look good, too, is harder still. Hilary Freeman talks to Ann Olivier, who has solved the problem by creating her own fashion label.
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PEOPLE One evening, two years ago, Ann Olivier was getting ready to go to the opera with her husband when she noticed with annoyance that her best ‘going-out’ dress had become a crumpled mess in her lap. It simply hadn’t been designed for someone who couldn’t stand and has to use a wheelchair. Instead of just noting the problem and moaning about it, however – like most of us would do – Ann, now 60, set about solving it. She spent the next year turning herself into a fashion designer and creating XENI, her own upmarket clothing range for women with disabilities.
I want to give something back Ann, who lives in East Finchley, north London, with her husband David, always had an artistic bent. Born in South Africa, she trained as an architect and came to London in 1981, where she worked for a large practice that specialised in the design of laboratories, including the one in which the human genome was sequenced. It was a job she loved. She spent her spare time painting figures and portraits in acrylics. But in 1990, the same year that her sister died at 37 from complications of MS, she too was diagnosed with the condition. ‘Even though I suspected it because I recognised the symptoms, it still came as a big shock,’ she says. Her MS began as relapsing remitting, but quickly became progressive and she had to start using a wheelchair to get around. ‘My firm were great but it became more and more difficult for me to work. About 10 years ago I retired from architecture. I also had to retire from painting because of the increasing lack of ability in my hands.’ As someone who had always taken pride in her appearance, Ann found the lack of stylish clothes for wheelchair-users frustrating. But it wasn’t until the night of the opera that it dawned on her that she might be able to do something about it. ‘I didn’t consciously think about it – the idea just came to me,’ she recalls. ‘There and then, I decided that someone should design garments that did not go under the seat. My first thought was, “I need a dress designer”, but a friend of mine, who is head of fashion at Middlesex University, said I should design the clothes myself. I thought: “Why not go for it?” Since retiring, there were so many empty hours in the day that needed filling up. My attitude has always been to try to ignore my MS and get on with things. I’m not one to dwell on my symptoms, or let them get me down. ‘As I always wear trousers, because I have a catheter, I figured that my first design should be a tunic and trousers. For the trousers, I took my 22 MS Matters 104 www.mssociety.org.uk
inspiration from Lauren Hutton’s heyday, designing a pair that fall straight from the hips, with plenty of room for a leg bag.’ Ann enrolled on a ‘How to start your own fashion label’ course at Central St Martin’s in London and built up a relationship with a pattern-cutter. She then set about designing and producing her sample collection. Her inspiration comes from images in magazines. She cuts out pictures of clothes she likes and then works out how she can design similar styles, with modifications for people with disabilities. For a woman who can’t stand, for example, she will create pieces which are full length at the front, but cut short at the back, so they can be taken on and off whilst sitting, and there’s no crumpling problem. Although her hands make it difficult to do detailed work, she can still sketch outlines, which she gives to her pattern-cutter, together with her list of requirements. She thinks carefully about how she can solve the sartorial problems faced by women with disabilities: ‘I tend to put all the detail around the neckline, shoulders or sleeves of my clothes – the area above the waist – with details like a large shawl neckline, because a woman’s lower half isn’t as visible when she’s sitting in a wheelchair. ‘One of the difficulties that I and many other women with conditions such as arthritis have is with manipulating buttons and zips. It struck me that rare-earth magnets were becoming much more affordable and I thought that they could be used to fasten garments. Not only would this be practical, it would also be tapping into the zeitgeist, what with the present popularity of iPads and their lovely magnetic covers. As far as I know, nobody else is doing this.’
My attitude has always been to try to ignore my MS and get on with things The XENI website is at www.xenicollection.com Other designer-wear wheelchair suppliers Wheelie-Chix Chic offers ‘designer wear for wheelchair women’. The company was set up in 2007 by wheelchair-user Louise Summerfield, who has rheumatoid arthritis. Shop online at www.wheeliechix-chic.com
By the end of 2011, Ann had produced a nine-piece sample collection of occasion-wear, ‘aimed at the smart woman aged 35 to 75 who aspires to Nicole Farhi’. With prices starting at £140, she admits her clothes aren’t cheap, but every garment is manufactured to order, and tailor-made to the individual needs of the customer. She uses traditional fabrics, such as wool and cotton, and polyester to prevent creasing. Her clothes are always modelled by disabled models. Ann has received a lot of good publicity for her collection. She has been asked to show at next year’s British Fashion Week and is now trying to raise money to finance her second collection. Her ambition is to bring out two seasonal collections every year so that disabled women can remain stylish and feel good about the way they look. Having invested most of her savings in the business, Ann (not to mention her anxious husband) is keen for XENI to become a profitable and long-lasting business. But it’s not just about making money: ‘I want to give something back,’ she says. ‘I want to be in it for the long term, to provide employment to people for many years. I’d really like to find a partner to join me in my endeavour, as it can get quite lonely. Ultimately, I want XENI to be my legacy.’
Rolli-Moden is a German company set up over 20 years ago by Manfred Sauer, himself a wheelchair user, to supply wheelchair fashion for men and women. They will despatch orders to the UK. Prices are in Euros. Shop online at www.rollimoden.de (to see the English-language version, click on the Union Flag at the top left) or order a catalogue by calling 0049 6226 960 203 (English spoken). Non-designer-wear suppliers Able2Wear at www.able2wear.co.uk (telephone: 0141 775 3738) has a wide range of clothing for disabled men, women and children, including wheelchair users. Clothing solutions offers a range of clothing for disabled people, including formal wear and work wear. Visit www.clothingsolutions.org.uk or call 01274 746739. Tips on buying clothing and footwear The Disability Living Foundation produces a number of factsheets on choosing clothing and footwear. Download free from www.dlf.org.uk or call 0845 130 9177 (weekdays, 10am to 4pm) American blogger Tiffiny Carlson writes about fashion on her blog at www.beautyability.com. She has also published a ‘Wheelchair Fashion Manifesto’ at www.unitedspinal.org
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M G A MS Society Annual General Meeting 2012 London Marriott Hotel, Regent’s Park, London Saturday, 15 September 2012 Your AGM pack will be arriving shortly after this issue of MS Matters, including full details of how you can vote for new trustees and nation council members. The AGM enables members to influence the work of the Society. This year, as well as the standard resolutions on the accounts and the auditors, we have a resolution about celebrating our 60th anniversary, which is in 2013, and all the people who have contributed to the fight to ‘beat MS’. Elections are also being held for trustees and council members in England, Northern Ireland, Scotland and Wales. Details of all candidates are included in the AGM pack. The Board of trustees and council members are volunteers elected by members of the Society to act on their behalf. Anyone who was a paid-up member of the Society on or before 10 June, 2012 is entitled to vote at the 2012 AGM. Votes can be cast: By post, using the forms in the AGM pack; Online at www.mssociety.org.uk-2012; By attending the meeting.
All members are invited to attend the meeting. However, if you are unable to attend, the proceedings will be filmed and will be broadcast live on the MS Society’s website. The recording will also be available for viewing after the AGM has taken place. Please use your vote and have your say! To book a place at the AGM, please complete the registration form at www.mssociety.org.uk/ agm-2012 or call 020 8438 0470.
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Can we quote you on that? With the summer holidays already upon us, many of you will be thinking about travel insurance. MS Matters looks at what MS Insurance Services have to offer. For over seven years, insurance broker Gallagher Heath has worked in partnership with the MS Society to offer specially tailored insurance products and services for people living with MS and other preexisting medical conditions. In that time, around £80,000 has been raised for the Society, because for every policy sold a donation is made to the Society by Gallagher Heath at no additional cost to the customer. The company won the 2011 Charity Times Award for excellence in the provision of travel insurance services to charities. What should you look for when buying travel insurance? Make sure that the policy specifically covers MS.
You may choose not to declare all of your medical conditions in order to keep premiums down. But this means that you are effectively purchasing very expensive baggage cover. If you haven’t declared your MS to the insurer or if the policy does not specifically cover MS, you will most likely have to pay expensive medical bills if you fall ill and require treatment abroad. So sometimes, insurance which seems cheap could end up costing you dearly if you actually have to make a claim. Even if you’re travelling in any of the European Union
countries (plus Iceland, Norway, Liechtenstein and Switzerland) and have your free European Health Insurance Card (EHIC, formerly the E111 card), you may not be covered for the costs of all your care should you fall ill. It is advisable, therefore, to declare your MS to
your insurer. You should also make sure that the policy you take out covers not only your MS but any related conditions, such as a bladder infection. It is important that the whole travelling party is
covered under one policy so that in the event of a holiday having to be cancelled or curtailed then everyone will be looked after. Shop around. Even if an insurer you have
used before offered the most competitive and comprehensive quote last time you took out a policy, that may not be the case this time.
Read the small print. Take time before signing
up to a policy to check exactly what is and isn’t covered. If anything is unclear, seek clarification from the insurance company. What does MS Insurance Services offer? Customer service: Gallagher Heath aim to make
the process of finding and buying the right travel insurance product for you as easy as possible. They can give you a quote in just one call – you don’t have to be referred separately for medical screening. Whoever takes your initial call will deal with you throughout the whole process. A tailored quote: Gallagher Heath always gives
you a price based on your own personal circumstances (for example, the type of MS you have, whether you have had a relapse recently or have any other conditions) as well as the regular factors, such as age and destination. This ensures that a person pays a fair price according to their own personal circumstances. Other companies, including many high street retailers, may have one rate for each type of MS irrespective of a person’s current medical well-being. A five per cent discount on the cost of a policy
if you buy travel insurance online. A ‘Travelling Companion’ option when buying
travel insurance in the event that other people travelling with you already have adequate cover in place. For a small premium per person, any costs incurred by those in the party not covered by MS Insurance Services will be met in the event that the person who is covered by MS Insurance Services has to cancel or curtail their holiday. Comprehensive cover: you will be covered not
just for your MS but for any related conditions, too. Making a claim Don’t delay when making a claim. Apply as soon as you can. Don’t make exaggerated or untrue statements on the claim form. Should your claim be rejected, write to the company’s claims department setting out in detail why you think their decision is wrong. If you think the company has acted unfairly, contact the Financial Ombudsman Service via www.financial-ombudsman.org.uk or call 0800 023 4567.
MS Insurance Services not only offers travel insurance but a range of insurance policies, including life assurance, home and motor insurance. To find out more, visit www.mssociety. org.uk/insurance or call 0800 783 3157. See also, the advert on the inside front cover of this issue of MS Matters. Insurance and MS (MS Essentials 03) is a free publication from the MS Society that offers detailed information and advice on buying insurance, including life assurance and travel insurance. Download it from www.mssociety.org.uk or call 020 8438 0799 for a copy. To find out more about the free European Health Insurance Card (EHIC) and to apply for one, visit www.ehic.org.uk or call 0845 606 2030.
Funding the future At the MS Society, we are as excited as you are about the breakthroughs researchers are making in the search for potential treatments for MS. To think that we can now say with some confidence that within 15 to 20 years there could be treatments capable of slowing, stopping or reversing the effects of MS is amazing. Of course, we can only make it happen if we get the funds we need to keep investing in long-term projects and new ones. In this uncertain economic climate, we’re all watching our spending, which is why we are asking whether you would consider giving in another way – by leaving a gift to the MS Society in your will. Your future gift could provide the final push we need. We can’t think of a greater legacy to leave to the world. Linda Jordan from Gloucester has been living with MS for 12 years and has been a member since 2004. ‘I’ve decided to leave a gift in my will to the MS Society,’ she says, ‘as all the research seems to be so close. It’s the “if only” – if only there was that little bit more, we might just get there. So for me, the end goal is a cure, but in the meantime I want to help give other people with MS the back-up and support they need.’ To find out more about how you can give in this special way, or to request a free brochure, call Diane Bennett on 020 8438 0845, email email@example.com or visit www.mssociety.org.uk/legacies
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Runners and riders This autumn brings a packed programme of running and cycling events that offer all sorts of opportunities to raise funds for the MS Society. We’ve picked five of the best. London to Brighton cycle ride 16 September A hugely popular ride that wends its way through Mitcham, Carshalton, Chipstead, Banstead and Haywards Heath. www.mssociety.org.uk/cycling Great North Run 16 September The world’s most popular half-marathon starts in the heart of Newcastle and finishes along the seafront at South Shields. The MS Society had a team of 425 last year and raised £162,398. The official race ballot has now closed. However, we still have some places left. www.mssociety.org.uk/greatnorthrun
Royal Parks Foundation Half Marathon 7 October Starting and finishing in Hyde Park, the 13.1 mile scenic route winds through four of London’s Royal Parks (Hyde Park, Kensington Gardens, St James’s Park and The Green Park) in all their autumnal splendour. The official race ballot has now closed, but the MS Society still has places. www.mssociety.org.uk/royalparks Bike MS New York City 21 October A unique opportunity to cycle through a traffic-free New York as the roads are transformed into bike lanes. The organisers, the National MS Society of the US, extend a very warm welcome and will be offering a variety of food and drink, live entertainment, massages and a sponsor expo. www.mssociety.org.uk/bikemsnyc Cycletta September and October Women-only bike rides focused on fun and achievement. Events take place throughout September and October in Warwickshire, Brighton, Cheshire and the New Forest. www.mssociety.org.uk/cycling
To discuss in confidence any aspect of life with MS, call the MS Helpline on 0808 800 8000 (Mon to Fri, 9am to 9pm; Sat, 10am to 1pm) or email firstname.lastname@example.org
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WHO CARES ABOUT SOCIAL CARE? The costs of social care On 11 July, Health Secretary Andrew Lansley announced what he called ‘the most radical reform of the social care system in 64 years’. Yet his plans, which only directly affect people in England, were met with widespread disappointment, because they fail to address the core issue of how to fund the system. As the devolved administrations in Northern Ireland, Scotland and Wales also consider how to confront the crisis in social care, we look here at what the government’s announcement means for people living in England.
What is social care? ‘Social care’ refers to a wide range of services and support to help elderly and disabled people live fuller, more rewarding lives. This includes help in the home, such as help with getting out of bed, washing and dressing, and the provision of meals; support to stay active and get out and about; support for carers; the provision of day centres and other drop-in services; and residential care. There is a great Latin phrase – sine qua non – that translates as, ‘without which, nothing’. That’s how I feel about the social care I get. Without it I would be purely existing and not living. It allows me to carry out my work as a volunteer for the MS Society and as a magistrate. I am able to stay cognitively engaged, contribute to society and provide a free service to the legal justice system. But I count myself as very fortunate because there are many people with MS who aren’t as lucky as me. Sanjay Chadha, who has MS
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Unlike health care, social care is not free to all at the point of use. Most people have to make some contribution to the costs of their care. Generally speaking, a means test is applied for all forms of social care – except in Scotland, where ‘personal care’ is provided free of charge to everyone over 65. In England, if you have more than £23,500 in savings and need social care support, you have to pay the full costs of that care. Once you move into a residential home, the value of your house is also included in calculating your savings, which has seen many people being forced to sell their house to pay for their care. Those whose means are such that they qualify for free care have their needs assessed by their local authority (or, in Northern Ireland, by the Health Trusts) and are graded according to whether they are low, moderate, substantial or critical. Increasingly, local authorities are only funding services for people needing the highest levels of care. According to The Guardian newspaper, ‘eight out of 10 councils are now only helping those with “substantial and critical needs”’ (How to fund care for the elderly, Jackie Ashley, 1 July 2012). Local authorities also set their own assessment criteria – there is no national standard – which has resulted in a ‘postcode lottery’, where people with the same needs receive different levels of care simply according to where they live. Right now, I would be absolutely terrified to move to a different area, in case I can’t get the few hours of support that my local authority gives me now, and that I had to fight so hard to get. Comment from MS Society Facebook page
Care in crisis There is general agreement that the social care system is in crisis and in urgent need of reform. The number of elderly and disabled people is steadily increasing but spending on the requisite support and care services is not keeping pace. The government’s own figures show that, after adjusting for inflation, total expenditure on social care is calculated at £2bn less this year than in 2009-10, with that on people aged 65 or over £1.3bn less. The government has promised an additional £2 billion for social care by 2014, but at the same time has cut local authority budgets by an average of 25 per cent. The Guardian again: ‘the local government shortfall – if there is no real reform – is estimated at about £16.5bn by 2020.’ My local council have said my care package personal contribution has gone from £0 to £140 per month. My circumstances have not changed one bit :( If I lose my direct payments then I lose my existence!! Comment from MS Society Facebook page
Proposals for change Last year, an independent commission set up by the government to review the system of social care in England issued its report. The Dilnot report, named after commission chairman Andrew Dilnot, recommended that a cap should be placed on the amount of money that an individual would have to pay towards their care, with the state picking up the rest of the costs. A figure of £35,000 was proposed. Dilnot also suggested that the meanstest ceiling be raised from £23,500 to £100,000. The cost of implementing these measures was estimated at £2.2 billion in 2015/16.
Photography: Sharron Wallace
The MS Society joined the widespread support for the Dilnot recommendations, and the government has been under significant pressure to implement these recommendations. In Northern Ireland, a review panel under John Compton was asked by the devolved administration to look at health and social care. The panel’s report, ‘Transforming Your Care’, was published last December. It sets out 99 proposals, which included increased patient choice and involvement in care and a strong emphasis on the home as being ‘the hub’ for social care. Significant sums of money will be needed to implement the Compton recommendations and it is not yet clear how they will be funded. The devolved administrations in Scotland and Wales are also reviewing their systems of social care, though no clear proposals for reform have yet emerged. I was diagnosed with primary progressive MS in 2000, and I am now 65 years old. Up until a week ago I have been receiving one morning call a day from social services to assist me with washing and dressing. This has now been increased to four calls per day after much badgering. The daytime calls are fine but the bedtime call is shocking – the social care workers arrive before 8pm each evening to put me to bed and tonight (Saturday) they arrived at 7.15pm. I was very upset at the prospect of being in bed so early so I sent the carers away. I can’t seem to get the carers to understand the problems associated with the fact that, due to the degree of my MS, once in bed I am unable to turn over or move so must lay in the same position until morning. I have telephoned social services many times, but they say there is nothing they can do. I am at my wits’ end and feel what little quality of life I have left is being denied to me courtesy of social services. Comment from MS Society Facebook page
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CAMPAIGNS A missed opportunity
Developing a new code of conduct and minimum
training standards for care workers; Following the publication of the Dilnot report, the government committed itself to the publication this spring of a White Paper – a policy or discussion document – that would outline plans for changes to the structure of the social care system, alongside a ‘progress report’ on discussions about funding. There was then a period of delay, during which anticipation built up. However, when the White Paper (‘Caring for our future: reforming care and support’) was published on 11 July, the high hopes of a concrete commitment to implement a new funding solution for the system were dashed. Although the government has accepted, in principle, the key Dilnot recommendations – capping what people would have to pay towards their care needs and relaxing the means test – it will only implement them ‘if a way to pay for [them] can be found’. A final decision on funding has been delayed until the next spending review, which could be up to two years away. The MS Society has joined over 65 charities in condemning the Government’s decision to delay crucial decisions on funding, and the failure to outline a clear timetable for reform. Simon Gillespie, MS Society Chief Executive and Chair of the Care and Support Alliance, said: ‘As the social care system faces collapse, the key test for this White Paper was to deliver an urgent timetable to reform social care funding. The government has failed this test. ‘Older and disabled people and their families have waited long enough and feel betrayed by yet more delay. Each day of delay condemns greater numbers of older and disabled people to the risk of isolation and neglect. Many more will be trapped in hospital beds because they cannot be cared for at home, and yet more families will be pushed to breaking point caring alone for sick loved ones.’
Some positive proposals Alongside the White Paper, the government published a new draft Care and Support Bill, which is a welcome simplification and clarification of the legislative structure for the system, and will provide much clearer rights and entitlements. The White Paper also sets out a number of positive steps, including: Extending the right to an assessment to more
carers, and introducing clearer entitlements to support for carers; Improving access to advice and information, including
establishing a new national information website; 30 MS Matters 104 www.mssociety.org.uk
Legislating to give people an entitlement to a
personal budget to allow them to have more personalised care; Increasing funding to support better integrated
care and support; Offering everyone the choice to defer payments
for residential care so no-one will have to sell their home in their own lifetime to pay for care. However, other positive proposals were worryingly watered down or lacking in clarity: The government is committed to a new national
eligibility threshold setting out the minimum care each person is entitled to wherever they are in England. While this is a vitally important step in tackling the postcode lottery, more detail is needed on the level at which this threshold will be set before we can assess whether it will have a significant impact. If the threshold is set too high, those with low-level needs will continue to be neglected until they hit crisis point. The government is to give people the right to take
their care package with them when they move to a different area. However, this is only until the new local authority carries out a new assessment. This means local authorities will be allowed to change peoples’ care packages, as long as they give a written explanation.
What’s next? The campaign continues! We will be working with the Care and Support Alliance to keep up the pressure on the government to make concrete commitments on how to fund the system – both to relieve the crisis that is affecting people now, and to put in place a sustainable system for the future. We’re also very aware that the devil is in the detail – we’ll be feeding in to the development of the proposals on how the system will work to make sure that the needs of people with MS are recognised. Keep up-to-date with what we’re doing by
signing up to receive campaigns updates at www.mssociety.org.uk/campaigns-community Or help us by telling your story via
www.surveymonkey.com/s/msstories. Your experiences are a powerful tool in demonstrating to decision-makers why change needs to happen. You can also comment online on the draft Care and
Support Bill at http://careandsupportbill.dh.gov.uk
Giving something back Clinical trials test new treatments, from drugs to physiotherapy, to see if they are safe and effective or better than what’s already available. Here we look at how drug trials work and talk to some people with first-hand experience. In the next issue of MS Matters, we will look at non-drug trials. How do drug trials work? Trials proceed through a series of stages that test the safety and benefit of a particular treatment. The process can take several years. In drug trials, some of the participants will be given the drug (or drugs) being tested and others will be given a placebo, a dummy drug (usually, a sugar pill), or a standard, already-used drug (when researchers want to see if a new drug is better than one that is already in use). The group of participants taking the placebo are known as the control group. Many drug trials are double-blind trials. This means that the trial participants are randomly assigned to the control group or to the group (or groups) taking the drug (or drugs) being tested. Neither the participants nor the researchers know who is in which group until after the trial data has been collected. This is so that any bias can be minimised or eliminated.
These are the main stages in the development of a new drug treatment:
Pre-clinical work Early-stage testing in laboratory-based models of MS establishes whether a treatment could work in principle and can give an indication of its likely safety.
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David Wilkie: clinical trials coordinator Imperial College London ‘I am funded by the Multiple Sclerosis Trials Collaboration and oversee a number of commercial and academic studies. I have worked on more than 20 studies, including trials of new therapies such as fingolimod, daclizumab, cannabinoids and Simvastatin in secondary progressive MS. ‘Most trials are “double-blind” so that bias does not creep in. Members of staff may be allocated specific roles so they are not party to certain data. For example, a treating physician may be assigned to perform a physical examination, review any adverse events that may have occurred and changes to medication, and a separate assessing physician would perform an EDSS (Expanded Disability Status Scale) assessment looking to see if there have been changes to a person’s level of disability over time. Each trial has stringent entry criteria. ‘People have fed back to me that they have generally enjoyed the trial experience. They’ve also mentioned that they enjoy giving something back to MS research, so we can work towards better treatments for people now and in the future. Without participants we can’t further MS research.’
People generally enjoy the trial experience ... they enjoy giving something back to MS research
Phase I clinical trial Small trials, with few participants, that look primarily at the safety of a particular treatment.
Phase II clinical trial Larger trials, involving anywhere from around 20 to 300 people, they look for evidence of benefit or effectiveness and extend the safety assessments begun at phase I.
RESEARCH John Hayes: trial participant
Elaine Perry: trial participant
‘I was diagnosed seven years ago with relapsing remitting MS, which has affected me principally through bowel and bladder problems. ‘About five years ago, when I was 53, although I had been healthy, the continual problems of MS were affecting my quality of life. I heard about a trial of a drug targeted at improving bladder function so I volunteered. ‘The trial was conducted by a member of Professor Clare Fowler’s department at the National Hospital for Neurology and Neurosurgery in London. The procedure was to take the drug/placebo and keep a fluids diary. There were four consultations over the six months of the study period. ‘It was a straightforward, pleasant experience. There was nothing mysterious, no hidden agenda. The project was well-constructed and it seemed relatively safe. The staff were friendly, it was a good-natured team, and they made me very welcome. ‘I felt some reassurance by knowing that it was all being done at the National Hospital, which is a centre of excellence – Professor Fowler recently got a CBE for her work with uro-neurology. I felt I was having my chance to engage with people who really know the clinical side of my problems, and that was the motivating side of it. I felt I got top-rate attention. ‘I think participating in research is socially responsible. If you take part in research you are doing your bit for other people with MS. I take beta interferon, so obviously people have taken part in trials of that. I would certainly say “yes” to another trial if I were eligible.’
‘I’m taking part in a trial at the Royal London Hospital on Gilenya for use with primary progressive MS. ‘I was diagnosed in 1998. In the grand scheme of things my MS isn’t too bad. My left leg and my balance are affected and it is difficult to hobble along. ‘In May 2011, I was tested and started on the Gilenya trial to investigate whether it might slow the progress of my MS. I have been taking it every day for the last year, and the trial will last three to five years. ‘Dr Klaus Schmierer is leading the trial. It was all explained to me, and I feel, “Just go with the flow”. Gilenya has been given the OK by NICE for some forms of relapsing remitting MS. If it looks like it is effective we will all start taking it during the trial even if we are currently taking the placebo, so I thought, “You’re on a good wheeze here”. ‘In the beginning, I went once a fortnight for three months. I gave blood, my heart was tested; I had an electrocardiogram; gave more blood. Now I go once every three months. I am to see an ophthalmologist, a dermatologist, and have lung function tests at the Chest Hospital. I have research scans, which are one-and-a-half to two hours in the MRI scanner. I can’t fault the care I’m getting, and it takes some organising. ‘Obviously there are risks. They understand a lot of the side effects now, so I’m in a better position than people who were taking it from the word go. It can still have side effects – that’s why I have regular check-ups. ‘The trial is at phase three, and worldwide there are over 900 people on it. If you don’t do these things, nothing is going to happen. I gave up work, so I’ve got to do something. I suppose it’s some sort of legacy. Go for it.’
If you take part in research, you are doing your bit for other people with MS
Phase III clinical trial Large trials, involving hundreds to thousands of people, which, typically, compare the new drug with either a dummy (placebo) or standard treatment.
Licence application In order to market any drug a licence is required from the regulators (MHRA in the UK, EMA in Europe), who review the clinical trial evidence to decide whether the drug is safe and effective.
If you don’t do these things, nothing is going to happen
Approval for the NHS Treatments are evaluated for their cost-effectiveness before being made available on the NHS. The evaluating authority – NICE (England and Wales), the Scottish Medicines Consortium or the Northern Ireland Department of Health – writes guidelines on how and when the treatment should be used.
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RESEARCH Anita Roberts: trial participant ‘About four years ago Dr Jeremy Chataway came to our MS Society branch meeting and talked about a trial of Simvastatin in secondary progressive MS. I ended up volunteering to take part. I had MRI scans, blood tests, psychology tests, walking tests and was recruited onto the trial. For about two years I took a capsule each day; I don’t know and didn’t really mind whether it was Simvastatin or a placebo that I was taking. The trial results are still being finalised, so it will be a while before I know. ‘Earlier this year I spoke to my neurologist, Dr Richard Nicholas, who mentioned a trial of Tysabri, also at Charing Cross Hospital, as a treatment for progressive forms of MS. I was not keen, as, like many people, I was worried about PML, a rare and often fatal brain disease that has affected quite a few people taking Tysabri. But Dr Nicholas said that a test has been developed that helps predict the risk of PML . ‘That was important news, so I volunteered to do the Tysabri trial instead. I have had two blood tests to see if I carry the virus that causes PML, so when that is settled I hope to start on the trial. I shall go once a month to the hospital for an infusion of either Tysabri or placebo, for two years. This time I hope to get the active drug, not the placebo, but who knows what will happen either way? ‘At MS Matters we often get letters from people saying, “All research is for people with relapsing remitting MS; there is nothing for people with progressive MS”, so I am pleased to say that there is, and there seems to be lots more planned.’
How long do clinical trials take? It can take from 10 to 15 years from an initial laboratory discovery to the final delivery of a drug that people can be prescribed. At each stage, funding must be applied for and participants recruited. The actual testing phase can take many months – sometimes more than a year. Then the results must be analysed, written up and published in a scientific journal following peer review. However, researchers are actively looking at ways of speeding the process up. The international collaboration on speeding up research into progressive forms of MS (see ‘What the MS Society is doing’, right) is an example of this.
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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. As David Wilkie says, 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 find out more about clinical trials, visit www.mssociety.org.uk/research or http://clinicaltrials.gov
What the MS Society is doing Every year, the MS Society funds a number of clinical trials. At the moment, the Society is supporting around 60 research projects at a cost of over £16 million. For full details, visit www.mssociety.org.uk/research The Research Network offers people affected by MS an opportunity to shape the Society’s research programme. Email researchnetwork @mssociety.org.uk or call 020 8438 0921 for more details. The MS Register, funded by the MS Society, combines information from you with clinical and NHS data. It will form an incredibly accurate picture that will completely revolutionise our understanding of MS. To join, visit www.ukmsregister.org The MS Society has joined an international collaborative effort to speed up the development of treatments for people with progressive MS. The International Progressive MS Collaborative was launched in May on World MS Day by charities from the UK, USA, Canada, Italy and the Netherlands along with the Multiple Sclerosis International Federation. Priority areas for research have been set out, including: identifying and developing potential treatments; clinical trial design; symptom management and rehabilitation. Dr Doug Brown, the MS Society’s Head of Biomedical Research and a member of the Collaborative, said: ‘There are currently no treatments for people with progressive MS to slow the worsening of disability, and trials and studies to identify potential treatments have so far been disappointing. That’s why we’re delighted to be part of the International Progressive MS Collaborative – a proactive attempt by MS charities around the world to find an urgent answer to this problem.’
RESEARCH NEWS CBT helps people adjust to MS
Gilenya approved by European authorities
A trial funded by the MS Society has found that cognitive behavioural therapy (CBT) is better than ‘supportive listening’ for helping people adjust to the early stages of MS. Supportive listening is a treatment where people talk through experiences, thoughts and feelings in a non-judgmental listening environment. CBT tries to address difficult emotions, behaviours and thoughts through a problem-solving approach. The trial, led by Dr Rona Moss-Morris at King’s College London and the University of Southampton, involved 94 people with MS who were able to walk and were within 10 years of diagnosis. Researchers found that the benefits of CBT were felt for up to 12 months after treatment. Also, people who entered the trial with the highest levels of distress and poorest levels of social support showed the greatest benefit from receiving CBT. The study demonstrated that nurses who were not mental health specialists could deliver the CBT sessions very effectively, making it a more cost-effective intervention. Ed Holloway, the MS Society’s Head of Care and Services Research, said: ‘This was a very important study for us to fund as it has shown for the first time, through a bona fide randomised-controlled trial, that CBT can make a real difference to people in the early stages of MS.’
The European Medicines Agency has completed its review of the risks and benefits of Gilenya, the first oral treatment for MS to be licensed in the UK, following reported heart problems and some deaths in people taking the drug. The Agency’s ‘Committee for Medicinal Products for Human Use’ (CHMP) concluded that the benefits of the treatment continue to outweigh the risks. It recommended that patients taking the treatment for the first time should have their heart rate thoroughly monitored before and after treatment, and people who have or have had certain heart problems should not take Gilenya. As we reported in the last issue of MS Matters (March/April), the National Institute for Health and Clinical Excellence (NICE) has confirmed that the treatment Gilenya should be available on the NHS to patients in England and Wales with highly-active relapsing remitting MS. Only people who have taken, and failed to respond to, beta interferon will be considered eligible for the treatment.
Disappointing results from cannabis trial Research has found that the main active constituent of cannabis (THC) doesn’t slow disability progression in people with progressive MS. The CUPID study, conducted at Plymouth University and co-funded by the MS Society, did, however, find some evidence of a beneficial effect in people who were at the lower end of the disability scale at the beginning of the study. This benefit was only found in a small group of people, so further research is needed. Dr Doug Brown, Head of Biomedical Research at the MS Society, said: ‘The MS Society is committed to supporting research into progressive MS and this was an important study for us to fund. While it, sadly, suggests THC is ineffective at slowing the course of progressive MS, we will not stop our search for effective treatments. We are encouraged by the possibility shown by this study that THC may have potential benefits for some people with MS and we welcome further investigation in this area.’ The CUPID study was co-funded by the MS Society, the National Institute for Health Research (NIHR) and the MS Trust.
First UK childhood MS incidence study published A study part-funded by the MS Society has found that each year around ten children (aged between one and 15) in every million in the UK will encounter MS-like symptoms. Researchers at the University of Birmingham and Birmingham Children’s Hospital also discovered that: the average age for a first MS-like symptom was 10; and in children aged 10 and over, these symptoms were experienced more among girls than boys. Children who are diagnosed with relapsingremitting MS have a second MS-like event usually within two years of the first. About one in 20 adults with MS experience their first symptoms in childhood. It is worth noting, however, that not all children who experience a first MS-like symptom or event will go on to receive a diagnosis of MS. Dr Doug Brown, the Society’s Head of Biomedical Research, said: ‘This research could help improve support services and treatments available to children with MS. Historically, MS has been thought to only affect adults, but there are a number of children now being diagnosed with MS and, as such, this is a research priority for the MS Society.’ The Society recently awarded a £123,000 grant to Dr Susan Kirk at the University of Manchester to assess the experiences of children with MS, as well as the support needs of their families and carers.
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MANAGING MS Steroids have been used in the treatment of MS for many years. Here we look at why and when they are prescribed.
What are steroids? Steroids are hormones produced naturally in the body. The steroids used to treat MS are known as corticosteroids. They are produced by the adrenal glands, which sit atop the kidneys and release various hormones, including adrenaline (epinephrine), into the bloodstream in response to stress. The steroids used in the treatment of MS are not the same as those that are used (and sometimes abused) by body-builders and athletes to build muscle. They use anabolic steroids, which mimic the action of the male sex hormones, testosterone and dihydrotestosterone. How do steroids work as a treatment for MS? The way that steroids work in MS is not fully understood, but they are thought to have an effect on the immune system, thereby reducing inflammation. This can help shorten the duration of a relapse and speed up recovery from the relapse. However, steroids don’t affect the outcome of a relapse – they don’t prevent any difficulty or disability that might result from a relapse. How are steroids used in the treatment of MS? Steroids are sometimes used to treat MS relapses. They are not used in the treatment of progressive MS. The National Institute for Health and Clinical Excellence guidance on the use of steroids to treat MS relapses states: ‘Any individual who experiences an acute episode (including optic neuritis) sufficient to cause distressing symptoms or an increased limitation on activities should be offered a course of high-dose corticosteroids.’ NICE also recommends that steroids should not be given more than three times in any year and that a course of steroids should last no longer than three weeks. How are steroids administered? NICE says that: ‘The course should be started as soon as possible after onset of the relapse and should be either: intravenous methylprednisolone, 500mg-1g daily, for between 3 and 5 days, or high-dose oral methylprednisolone, 500mg-2g daily, for between 3 and 5 days.’ Sometimes a tapering dose is given, meaning the dose is reduced every few days. 36 MS Matters 104 www.mssociety.org.uk
Oral steroids are usually in tablet form or sometimes liquid; intravenous steroids are administered through a drip. Treatment regimes vary between MS centres. A 2009 review of the available evidence compared the effectiveness and safety of oral and intravenous corticosteroid treatments in people with MS. The review found no major differences in clinical outcomes and both treatments appeared to be equally effective and safe. Usually when people choose to have intravenous methylprednisolone the treatment is given in hospital, either as an in-patient (you stay in the hospital overnight) or as a day-patient. Occasionally, intravenous methylprednisolone is given in the GP surgery or at home. Your MS nurse or GP will know the procedure in your area. If you are prescribed oral methylprednisolone, you will not usually have to attend hospital. What are the side effects of steroid use? There are a number of side effects of steroids – as there are with all drug treatments. They should be weighed against the potential benefits, ideally in discussion with your MS nurse, GP or neurologist. However, steroids are generally well tolerated when given to treat relapses, and side effects are normally short-lived, including: mood alteration (up or down); altered sleep pattern (often difficulty in falling asleep); upset stomach or gut – including feeling nauseous; palpitations (faster than normal heart rate); metallic taste in the mouth; increased appetite; weight gain (usually short-term); flushing/ reddening of the face; ankle swelling; and acne (temporary). With regular or prolonged use of steroids (which is generally not recommended), longer-term side effects can include: thinning of the skin; thinning of bones (osteoporosis); increased blood pressure; diabetes; and very rarely, some people can experience severe damage to the hip (known as avascular necrosis of the hip). Thanks to Dr Paul Molyneux, Consultant Neurologist, Addenbrooke’s Hospital, Cambdridge, and to Barbara Wingrove, MS Specialist Nurse, City Hospitals, Sunderland. Managing a relapse (MS Essentials 01) is a free publication from the MS Society. Download free from www.mssociety.org.uk or call 020 8438 0799 for a copy.