MS Matters 102 by sarah westlake

102 FORMarch/April PEOPLE LIVING 2012 WITH MS

Can bake, will bake Ainsley Harriott’s top tips for a successful Cake Break Soothing advice Keeping MS pain at bay

Plane failing One couple’s battle with a budget airline

FOR PEOPLE LIVING WITH MS

MS Matters 102

UP FRONT Looking forward to MS Week

NEWS First oral treatment for MS to become available on the NHS, benefit limit imposed, and more

LETTERS Benign MS, inaccessible dental check-ups, and more

MS WEEK We talk to celebrity chef Ainsley Harriott, the face of this year’s Cake break, and we look at what’s happening in MS Week

SOCIAL CARE COSTS Barrister Michael Tooley talks about his fight against increases in social care charges

PLANE FAILING When Ryanair failed to provide the necessary assistance, Jo Heath was left feeling angry and humiliated. So she and her husband took the airline to court PAIN MANAGEMENT Around a third of people with MS experience some form of pain related to the condition. Anthony Stone looks at how pain can be kept at bay

PEOPLE MAKING A DIFFERENCE Volunteers are the backbone of the MS Society. We talk to two volunteers and explain how you can get involved

YOUR SOCIETY Brambles respite care centre update, MS Awards nominations open, adventure weekends, and more

CONTENTS

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 membership@mssociety.org.uk 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, Sarah Westlake Editor Colin Richardson Design Crescent Lodge, London www.crescentlodge.co.uk Photography Crescent Lodge, London (unless otherwise credited)

TALK ABOUT MS MS Society website forums http://www.mssociety.org.uk/forum Facebook group is at http://www.facebook.com/MSSociety Twitter http://twitter.com/#!/@mssocietyuk

For advertising sales, contact Parminder Sangha, 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.

MS Matters 102

Every conversation, every tweet, every video shared, and every pound raised can make a difference We’re entering into what is always a busy period in the MS calendar – and it’s even busier this year thanks to MS Life, our flagship biennial lifestyle event. This unique occasion is always something to look forward to, and we’re gearing up for a strong attendance at Manchester Central on 14 and 15 April. Some of you may be joining me at our fundraising event, ‘Wheel & Walk’, taking place on the streets of Manchester on the morning of Sunday, 15 April – if you want to take part, too, please join us in the Charter Suite Foyer from 8.30am to register. The ‘Wheel & Walk’ will start at 9.30am. If you’ve not signed up for MS Life yet, there’s still time. Turn to page 26 to find out more. Just a couple of weeks after that, it’s MS Week (30 April to 6 May) – and we’ll be aiming to raise our voice in the media to get people talking about MS. It’s an important opportunity to raise awareness and funds to continue our fight to beat MS. We’ll be releasing a report giving a snapshot of how MS impacts on people’s lives, and how attitudes and misunderstandings of others can make living with MS harder than it needs to be. We’ll be unveiling some videos that we hope will help people better understand what it’s like to live with MS. And we’ll be raising money online and through hundreds of Cake Break events happening right across the country. See pages eight to 10 for more.

UP FRONT

The campaign is aimed at encouraging people, whether they’re closely connected to MS or not, to get active and ‘join the fightback’ against MS – and we need your help. Visit our website at www.msfightback.org.uk to watch the videos. And please spread the word: tell your friends, family, work colleagues, neighbours, Facebook friends and Twitter followers to get involved. Every conversation, every tweet, every video shared, and every pound raised can make a difference. And one final request: to raise awareness, we need your stories. We know that every day people fight back against MS. Thousands around the UK get active by living a full life in spite of (or sometimes because of) their MS. Many of them, and their friends and family, get active by fundraising, volunteering or campaigning with the MS Society. So how are you getting active to beat MS? Tell us by emailing msweek@mssociety.org.uk or writing to the editor of MS Matters. Your story might just make the difference in helping others understand.

We need your stories

From Simon Gillespie Chief Executive of the MS Society

MS Matters 102

Gilenya

NICE approves new MS pill Gilenya for NHS Gilenya, the frist oral treatment for MS, is to be available on the NHS for the treatment of adults in England and Wales with highly-active relapsing remitting MS. The National Institute for Health and Clinical Excellence (NICE) has agreed that people with MS who have regular relapses or increased relapse rates (compared to the previous year), despite taking beta interferon, will be eligible for the treatment on the NHS. Gilenya will fill a gap for thousands of people with MS who don’t respond to interferons, but whose symptoms are not advanced enough for Tysabri. The decision means that, come June, the NHS will have a legal obligation to provide the treatment to anyone with MS who is considered by their neurologist to be eligible. Meanwhile, the Scottish Medical Council has rejected Gilenya for people in Scotland. A decision is still to be made by authorities in Northern Ireland. Nick Rijke, Director of Policy and Research at the MS Society, said: ‘We are delighted. This decision signifies a major step forward in the treatment of MS. Gilenya has been found to be highly effective in trials and taking a daily tablet will come as welcome relief from frequent, often unpleasant, injections. ‘Making this new treatment available will increase patient choice for thousands of people with MS across England and Wales, but we’re deeply disappointed by the SMC’s decision in Scotland and urge them to reconsider.’ The decision is a u-turn by NICE, whose draft guidance up until now refused Gilenya on the grounds of cost effectiveness. Gilenya is the first oral treatment for MS and was licensed in March 2011 – all other treatments for the condition are administered by injection or infusion. The European Medicines Agency, which licensed Gilenya, is currently reviewing its risks and benefits.

Neurology standards slammed in new report MPs investigating neurology services in England have slammed them for being inadequate and ‘well below’ standard in a report. The Public Accounts Committee (PAC), the committee of MPs that scrutinises public expenditure, has made a raft of recommendations to the Department of Health (DoH) aimed at improving services for people with neurological conditions such as MS. The PAC enquiry followed a damning report from the National Audit Office (see MS Matters 101). MPs took evidence from the DoH and neurological professionals, among others. The PAC recommendations include the appointment of a neurology ‘tsar’ and the introduction of personal care plans for everyone with a neurological condition. Nick Rijke, Director of Policy and Research at the MS Society, said: ‘It’s reassuring that MPs have confirmed what we have been arguing for some time – that neurology services need a step-change in leadership and quality. ‘Of course, there are examples of great practice, but the big picture is much murkier. Patients have to have their needs properly assessed and services need to be commissioned to meet those needs. It’s not rocket science, yet, as this report shows, neurology services are often below par, are poorly co-ordinated, and people with MS are left to struggle for basic care. ‘We badly need the government to appoint a clinical champion and to ensure that this raft of recommendations is implemented.’ Why not write to your MP to call on them to urge the government to act upon the PAC’s recommendations? You can write by email via the MS Society website at www.mssociety.org.uk

Of course, there are examples of great practice, but the big picture is much murkier

NEWS

Quality Standard for MS to be developed The government has announced that it is referring a new set of Quality Standards to the National Institute for Health and Clinical Excellence (NICE) for development. MS, along with several other neurological conditions, is among the topics referred. In a written statement on 19 March, Paul Burstow MP, Minister for Care Services, said: ‘NICE Quality Standards are a set of specific, concise statements and associated measures. They set out aspirational, but achievable, markers of high-quality, costeffective patient care, covering the treatment and prevention of different diseases and conditions. ‘Quality Standards will underpin the commissioning process. Under the provisions set out in the Health and Social Care Bill, the Secretary of State and the NHS Commissioning Board will come under new duties to have regard to any Quality Standards produced by NICE.’ This referral implements one of the recommendations of the Public Accounts Committee report on neurological services (see story on page four). Laura Weir, Director of Policy and Campaigns at the MS Society, said: ‘This is fantastic news and credit to our long-standing campaign to get the MS clinical guideline updated.’

Time limits introduced for some ESA claimants The government is limiting to one year the period for which contribution-based Employment and Support Allowance (ESA) can be paid. The changes will affect ESA claimants in the Work-Related Activity Group and will take effect from 30 April. ESA is the benefit paid to disabled people who are unable to work (those in the Support Group of ESA recipients) and those who do not currently have a job but are considered capable of work (those in the Work-Related Activity Group). People in the Support Group will not be affected by the changes, nor will people receiving incomerelated ESA. Existing claimants of contribution-based ESA are being sent letters by the Department of Work and Pensions advising them that they will lose their benefit from 30 April. These claimants will be given details of how to apply for income-based

ESA, eligibility for which depends on a person’s income and savings. If they have already been assessed as eligible to receive income-based ESA, they will automatically be moved over once their contribution-based entitlement runs out. People aged between 16 and 20 (or under 25 if they were in education or training at least three months before turning 20) will no longer be able to receive contribution-based ESA if they have made no National Insurance contributions. The changes stem from the Welfare Reform Act, which became law in March. The MS Society’s Policy and Campaigns team is

publishing a guide to ESA that will include details of how to apply and how to make an appeal against a refusal of benefit. It will be available at the end of April for download from the MS Society website or by calling 020 8438 0799. If you are affected by any of these changes,

you can talk over any concerns you have with the MS Helpline by calling 0808 800 8000 (see page 11 for opening hours) or emailing helpline@mssociety.org.uk. If you live in England and Wales, the MS Legal Officer at the Disability Law Service may be able to offer advice. Call 020 7791 9826 or email msadvice@dls.org.uk

Campaigners rally for social care reform Members of the MS Society joined over 800 campaigners from over 50 different charities in a mass lobby of Parliament on 6 March to urge the government to reform the social care system. The ‘End the Care Crisis’ lobby was organised by the Care and Support Alliance, of which MS Society Chief Executive Simon Gillespie is chair. He took the opportunity to question key decision-makers such as Liz Kendall, the shadow minister for care and older people, and the minister for care services, Paul Burstow MP. To add your voice to the campaign, see www.mssociety.org.uk/carecrisis for more information, or alternatively give our Info Team a call on 020 8438 0799 – they will happily sign you up to a petition urging the government to end the care crisis.

MS Matters 102

but the increase in pain meant that I couldn’t cope so I went back on them. They help but do not totally relieve the pain. Sleep is difficult. Is there any answer? John Houlton, by email

Benign MS In the last issue of MS Matters, Hilary Freeman wrote about her experience of living with benign MS (‘Living in limbo’). Her article struck a chord with a number of readers, and here we publish a selection of their responses. Thank you for your article, Hilary. It rang several bells. I was given a very strong prognosis of MS in 1974 when I was 21 and going through an extraordinarily stressful time. It scared the life out of me and felt like the end of the world. I refused the only test available, a lumbar puncture, and it was only after being prescribed anti-depressants that I managed to move forward. So I blocked MS out of my mind and carried on carrying on; when I got ill I blamed myself for not looking after myself and also at times suspected my sanity, undertaking a lot of therapy. No doctor, even my GP, ever raised the subject of MS. Twenty years later I had a late pregnancy with twins, had an even worse ‘spell’ than in ’74 and finally got a diagnosis of MS. Seven years after that a consultant casually referred to my benign MS, which I had never heard of before. When I have mentioned it to the Health Visitor or the GP, feeling guilty about getting DLA, I am told not to be silly; it is such a variable condition. I still feel lucky when I see friends in the local MS Society and what they have to deal with. I rely on good management and diet but I am still limited in what I can do and there are times when I can barely walk; I certainly can’t stand for long periods. If I’m having a really good day, I might push the boat out and have to suffer the consequences; there’s always a price to pay.

We have a feature on pain management in this issue. See pages 18 to 21. I don’t have relapses and have good use of my limbs, but I had first symptoms over 40 years ago when in my early 20s: optic neuritis. When I was a medical student I was already baffled by what I now know to be cognitive problems. Each pregnancy was accompanied by severe backache, always cured, as if by magic, when the baby arrived. Then the urinary and faecal incontinence began (elastic-waisted trousers help), and the back pain returned with a vengeance, accompanied by bipolar depression. This was when the doctors finally admitted it was MS. So by the time I was 43, a single parent with three teenagers and a demanding but part-time job as a psychiatrist, I took early retirement for the second time and settled down to enjoying my life quietly. I call it my ‘half-life’, as I need half a day’s rest for half a day of normal activity, but I pack a lot in. Retirement was forced by a combination of severe fatigue, cognitive difficulties and depression. My ‘half life’ includes a lot of country walking (with sticks to help prevent falls), a bit of swimming and yoga, volunteering with the local Wildlife Trust and with the User Group at the local neuro-rehabilitation hospital, enjoying very loyal and supportive friends and family. There’s also daily fatigue, recurrent and chronic urinary tract infections, ever-present back pain, painful sensitive feet, frequent stumbles and falls, insomnia, days on end of being ‘unable to think straight’ – and forgetfulness and absent-mindedness. I have a full and happy life, but I wish they wouldn’t call it benign as MS has shaped my life. Molly Venning, by email

Barbara Atherton, Bridlington At last, someone has written about benign MS. I too feel I have dropped off the radar and am fed up with the pain I am in. Hilary Freeman’s article exactly tells how it is for me. I walk but in a lot of pain. The pain is so bad I have trouble sleeping. My doctor prescribed pain patches, which gradually got stronger, but I was still in pain so she sent me to the pain clinic. There I was told that the patches were inappropriate so I gradually came off them,

Two months before my 60th birthday, after having ricocheted around my kitchen, not being able to stand on my left leg, I was diagnosed as having had a minor stroke. Two-and-a-half years later, with very little change in how my left leg and foot were feeling and no follow-up from the hospital, my GP referred me to another hospital and, after the usual tests, I was diagnosed with benign MS. This actually came as a relief as it explained so much; it was as if the last piece of a jigsaw had been put into place. With hindsight, I had probably had the condition for many years – ‘benign’ being the operative word.

LETTERS

The point of this letter is to thank you for the article by Hilary Freeman. At last I know there is someone out there who feels the same as I do. I feel a complete fraud and very guilty in the company of those with all the visible symptoms of MS and whose lives are clearly very affected by the condition. I also come away realising how very lucky I am that it doesn’t hugely impact on my life but have an insight to how things could possibly be in the future and that it doesn’t have to be the end of the world – the positive thinking of my fellow MSers is wonderful. In the meantime, apart from a still sort of numb left leg and foot, the odd tingles in my hands and, of course, the fatigue, I get on with my very active life. But, like Hilary Freeman, I feel a little bit in limbo, waiting for MS to ‘bite me on the bum’. Pam Osborne, by email

The problem with dentists I am writing this in an effort to find out how many folk with primary progressive MS or indeed any type of MS have trouble with being treated at the dentist. The problem stems from my inability to ‘hop on the couch’ because I need hoisting everywhere. The accessibility of the clinic is rather irrelevant if I can’t get onto the couch! I was wondering how other folk cope with this problem. Daphne Wright, by email

Just to say how my wife (who has ‘benign’ MS that is anything but harmless) and I really enjoyed reading MS Matters 101. In particular, please thank Mark Lewis and Hilary Freeman for their most interesting and well-expressed contributions. Robin Ward, Brora

Car parking blues I read with interest the article by Mark Lewis (‘Rupert Murdoch’s worst nightmare’, MS Matters 101). Many of his experiences mirror many of my own but one particular incident stands out. One day, my husband and I visited a ruined abbey in Yorkshire in our ‘freedom wagon’ – a red, open-top, Lotus Elan. As we were parking in a disabled parking space, I heard a loud voice proclaiming, ‘I thought these spaces were only for those who had Blue Badges’. My husband climbed out and said to the woman that they were, and he was just getting mine from the boot (we were driving with the roof down and didn’t want to risk it being blown away). The woman looked very sheepish and said, ‘Well, I wish I were disabled and could have a car like this.’ I said I didn’t think she meant that and, with a bent head, she agreed. Surely having MS doesn’t mean we can’t have a bit of fun, too? Many thanks for all you do and for the interesting articles in the magazine. June Turnbull, by email

Oral Health and MS is a free factsheet from the MS Society. Download a copy from www.mssociety.org.uk or contact the Information Team on 020 8438 0799 (weekdays, 9am to 4pm) or infoteam@mssociety.org.uk

Negative about being positive I always keep a positive outlook about most things and that way of thinking keeps me feeling good despite being diagnosed with primary progressive MS five years ago. But I have found that because I am a positive person and because of my positive outlook some people feel sorry for me and assume I am in denial! It annoys me that other people look at me in a different way now – which is why I have told very few people. Does anyone else feel the same? Karen Lewis, by email

Put your thoughts on paper and send them to MS Matters, 372 Edgware Road, London NW2 6ND or email msmatters@ mssociety.org.uk

MS Matters 102

Get active – join the fightback MS Week 30 April to 6 May Our theme for 2012 is ‘Get Active’. Everyone and anyone can get active and join the fightback against MS by helping us campaign, raise awareness and raise funds. For MS Week, we’re planning an exciting campaign that we hope will grab the attention of people with and without the condition, and help raise vital money to help us continue our fight to beat MS.

Fighting back against MS

Raising awareness

We are producing a series of short videos in which people take on challenges that simulate an MS symptom such as lack of balance or difficulty with walking. We’re hoping these videos will tell a compelling story to people with no connection to the condition, encouraging them to ‘join the fightback against MS’ by making a donation. Please watch these videos on the campaign website www.msfightback.org.uk or on our You Tube channel www.youtube.com/user/MSSociety and share them with your social networks. MS Week also features the Society’s popular annual fundraising event, Cake Break. This year, the event is being supported by celebrity chef Ainsley Harriott (see more on page 10).

We have commissioned an opinion poll of public attitudes to MS to find out what people think about the condition and unmask common misconceptions. The results will inform a report that will be published in MS Week that will, we hope, generate significant media interest. Stories about people with MS will be woven throughout the report, explaining the challenges of living with the condition, looking in particular at the impact MS has on their relationships, work and social life.

YOUR SOCIETY

Your story We are always looking for people who want to tell their story about what it’s like living with MS. Your story of your life with MS can make a big difference to our efforts to raise awareness and funds. The work that the MS Society does is greatly strengthened when we introduce members of the MS community to the media, government policy-makers and the general public. Jo Bloomfield, 36, lives in Bedford with her husband, Les, and two young sons. She will be fronting a mailing we are sending to thousands of households in MS Week. This is her story. ‘I’ve always enjoyed reading MS Matters,’ says Jo. ‘I subscribed to the magazine when I was first diagnosed, and reading about people’s different experiences and the research that was going on was great. To me, at that time, it was very encouraging. Reading about people who go horse riding, climb mountains, run their own businesses, these are people who have not allowed MS to take over their life. They’ve had to find a way to deal with it or to accommodate it.’ Jo was herself featured in MS Matters (May/June 2008) and, since then, has been actively involved in the Society’s work. ‘I was in hospital when I first got a phone call from the MS Society saying that they wanted to do a DVD on how breakfast and after-school clubs benefit people with the disability. That was almost my spur to get out of hospital: I thought, right, I’ve got to do this now.’ Later, the MS Society arranged for Jo and her family to meet Oritsé from the boyband JLS (see photo above right). ‘It was great, especially for my boys, because they can see from his success that young carers can and do go on to fulfil their dreams.’

Jo has helped to raise awareness of MS by talking to the media, both local and national, and has featured in several magazine and newspaper articles. Jo approaches these meetings with local media as a challenge. At first it could be seen as being a bit nerve-wracking, but the desire to tell her story to help others is more important than any personal nervousness. Appearing on a letter dropping through the letterboxes of thousands of people all over the UK is no big deal because ‘you get up every morning and you want to be well and you want to improve but it takes time, so there has always got to be another objective, another challenge. You just have to get on with it, as far as I am concerned – thankfully, it’s not a brain tumour; thankfully, it’s not cancer. It’s something I still have to fight with every day, but I am also quite positive.’ Without Jo’s story, and others like it, it would be hard to explain to people not affected by MS, what it is like living with the condition day in, day out. For Jo, ‘the MS Society gave me all these opportunities to share my story, to hopefully help others see how one ordinary family copes. This is my way of giving something back.’ To share your story, please email msweek@mssociety.org.uk or call Diane on 020 8438 0840.

continues

MS Matters 102

YOUR SOCIETY

What’s your favourite cake? Good question ... I suppose it has to be a lemon drizzle. Classic. Who in your opinion is the best baker of all time? I love Mary Berry, she’s been around a while but she’s only recently started to get the recognition she deserves. She’s all about spreading the baking love and I admire that – she’s extremely passionate about what she does.

Can bake, will bake Do you like cake? Of course you like cake. Why not take part in our biggest community event of the year, Cake Break, which officially takes place at the end of MS Week, on Friday, 4 May? Raise some money by baking and eating cake – what could be simpler? Here we talk to one of the nation’s favourite chefs, Ainsley Harriott, the face of this year’s Cake Break.

If you could invite one person to your Cake Break event who would it be and why? It would have to be Barack Obama. My grandfather on my mother’s side was a chef and went to America to work. One day, the White House called him up and asked him to cook for the president. I think it was Woodrow Wilson but I can’t be sure; it was before my time. A black man cooking for the president was a great achievement then, but now we have a black president so I would love to follow in my grandfather’s footsteps. I read Obama’s book and he’s an interesting character, I think we’d have lots to talk about. Why would you encourage people to take part in Cake Break? It’s such a fun way to get your friends and family involved in raising money for the MS Society. It’s easy to do and will benefit people with MS all over the UK – what more reason do you need? Ainsley’s top tips

You have a close connection to MS – did you know much about it beforehand? My sister-in-law has MS, and as much as I was always aware of it I didn’t know a great deal about it until her diagnosis. It has had a huge impact on our family life, which wasn’t something we were prepared for, or expected, especially as her condition has become more aggressive. However, she generally keeps well and tries to stay as active as possible. We, in the meantime, try to support her as best we can and draw strength from the impressive advances in research. What would be the one misconception about MS you’d like to put straight? That it affects everyone the same. There are different types of the condition, different treatments that benefit some people, and not others, and a range of different symptoms people can experience. It’s not a simple ‘one size fits all’; that, I have learned. What is your earliest memory of baking? I remember making fairy butterfly cakes when I was about five years old with my mum, and I did the exact same with my kids. We would sometimes add a little cocoa or chocolate into the icing and make them half chocolate, half vanilla, like an ice-cream. Yum!

Make sure your oven is working properly – a lot of

people don’t service their ovens and you need an even temperature for baking. Get your hands on the best quality ingredients you can. It doesn’t have to be complicated to taste good

– some of the best recipes are the ones with no more than five ingredients. Have fun!

Further information Register online at www.mssociety.org.uk/cakebreak for your free host pack bursting with top tips and recipe ideas. Alternatively call Mita Vaghji in the Society’s Fundraising Team on 020 8438 0737. For full details of all the events taking place in and around MS Week, visit www.mssociety.org.uk, email msweek@mssociety.org.uk or phone the Info Team on 020 8438 0799.

People have been talking to us for 20 yearsâ&#x20AC;Ś â&#x20AC;Śif you have a question or just want to talk, get in touch

Free MS Helpline 0808 800 8000 helpline@mssociety.org.uk The MS Helpline is now opening on Saturdays from 10am until 1pm, between April 21st and October 20th. Usual opening hours also still apply: Monday to Friday 9am to 9pm (closed bank holidays)

Multiple Sclerosis Society. Registered charity numbers 1139257 / SC041990. Registered as a limited company in England and Wales 07451571

MS Matters 102

Photography: Graham Dunn

Challenging the costs of social care Michael Tooley’s profession sees him involved in legal battles on an almost daily basis. But when Sheffield Council increased his care charges by more than 200 per cent, he found another reason to go to court. Michael talks to Anita Roberts.

‘I was born in 1960. By profession I am a barrister. By occupation I am a Crown Advocate employed by the Crown Prosecution Service (CPS), which involves appearing as an advocate for the prosecution in Crown Court cases. I have been a Crown Advocate since 2006, and have been employed by the CPS continuously since 1986. ‘I was diagnosed with MS in 1997. I first saw my GP about the early symptoms in 1993. At first, the symptoms were little more than a nuisance that I learned to live with, but since 2006 they have had a much greater effect upon my life. I am now paralysed from the neck down except for some remaining limited movement in my right arm and hand. ‘Since my symptoms began to worsen, MS has had a significant effect upon my working life. I now need a PA, who not only provides personal care but also finds papers for me, looks up legal authorities, wheels me into court and sits with me to take a note, turns pages, etc, etc.

I thought the increase was unreasonable, unfair and discriminatory ‘Although I did not appreciate it as such, fatigue has made my day-to-day life difficult. That was so even before diagnosis. I learned to cope with symptoms such as the intention tremor in

PEOPLE

my right arm. I taught myself to write with my left hand. As things have got very much worse, everyday life has become extremely difficult, not just for me but for my family. I have very little left in the way of self-care and I now even require help to eat. I can still hold a wine glass, however. ‘I have a personal budget to pay for my care. It was the council’s decision to increase the maximum weekly contribution to this from just over £100 per week to £350 per week that led to my legal challenge. They did it to meet a shortfall in government funding. I objected because I thought the increase was unreasonable, unfair and discriminatory and because I was advised that the way in which the council had gone about things was legally flawed. ‘I wanted them to act in a way which was not unreasonable, unfair or discriminatory. I would not have embarked upon the litigation had I not expected to win. My professional advisors thought it more likely than not that I would win. ‘My case failed. I lost for two reasons. Firstly, the law had changed in the time between my bringing the action and it being heard. Secondly, the judge was persuaded that I had no legal standing to bring the action because, for the time being, I did not have to pay the contribution because my capital was inadequate (I had spent most of it in adapting my house) and my income from employment did not count for the purposes of contributing. ‘If one embarks upon litigation one must be prepared for the prospect of failure. I do, however, feel very disappointed. As the

losing party in a civil action, I will have to pay a proportion of the other side’s costs. I am currently taking up the matter through my MP, Paul Blomfield (Labour, Sheffield Central).

One is always reliant on the goodwill of others ‘Although I lost the case, I don’t have to pay any extra for my care at the moment. However, if I were to cease work, my pension and income protection insurance would be counted in assessing my contribution. It is more than likely that I would have to pay the maximum amount. I would have to decide whether or not the benefits I received were worth the costs. ‘I shall have to work for as long as I am able until my normal retiring age of 60. My daughter is aged 17. My son is aged 13. Both attend a state comprehensive school. We shall have to pay for their university education. We have made plans for that. It does, however, mean that I cannot put aside any extra capital to provide for my old age or for a rainy day or just for things like a wedding if one of our children were to get married. ‘Having a marriage where one party is virtually a six-foot, 52-year-old, 13-stone baby creates its own problems. Having to consider my needs in virtually every circumstance of family life is not easy for any of us. Those who do not share my

circumstances do not have to do take such considerations into account. One is always reliant on the goodwill of others. ‘If someone else were to bring a similar case to this there is, of course, in the circumstances which might then prevail, a chance that they might win it. They should seek the best quality professional advisors and take their advice. I did; it is not a certain way of winning. One can never tell with litigation.’ If you have concerns about

the care services you receive, there are numerous sources of advice and support. The MS Legal Officer at the Disability Law Service can advise people living in England and Wales. The Equalities and Human Rights Commission can also help with cases of disability discrimination. Contact details for both organisations can be found on page 16 of this issue of MS Matters. You can talk your concerns

through with the MS Helpline by phoning 0808 800 8000 (Mon to Fri, 9am to 9m; Sat, from 21 April, 1am to 1pm) or by emailing helpline@mssociety. org.uk

MS Matters 102

Plane failing When regular travellers Josephine and Paul Heath from Northampton booked a flight with Ryanair in the summer of 2008, they were looking forward to an enjoyable weekend break in France. Instead, they were landed with a lengthy legal battle. Hilary Freeman reports. Retired tax officer, Josephine, now 58, was diagnosed with secondary progressive MS in 1989. For the past 10 years she has used a manual wheelchair full-time. Jo’s husband, Paul, is a race engineer for a World Series racing team Her brother-in-law, Tony Kennan, was the Chairman of the Society from 2005 to 2011. ‘Paul and I used to go abroad about three times a year – usually with Ryanair because it’s cheap – and there was never a problem,’ says Josephine. ‘I have a lightweight, fold-up wheelchair, and always made sure in advance that the airline was aware of my needs, and booked an Ambulift to lift me up to the plane.’ But on 21 June, 2008, the Ambulift simply didn’t turn up. Josephine found herself sitting on the tarmac at the bottom of the airport steps with no means of getting on to the plane. ‘Everyone else had boarded and they were sitting waiting to depart. A member of the crew said to me, “If the Ambulift doesn’t turn up, we’ll just have to leave you there. We need to depart on time.” ‘There were no alternative flights for two days, our luggage was already on board, and nobody from the ground or airline crew offered to help. In fact, they said they couldn’t help me because of health and safety concerns. ‘So there was only one way I could get on the plane: Paul, who is fortunately a tall, strong man, had to give me a fireman’s lift, put me over his shoulders and carry me up the stairs himself. I’m five-foot nine and weigh over ten stone, so it was very reckless and precarious – we could both have fallen. And with everyone watching through the windows, it was also very embarrassing and stressful. I felt ridiculous. I closed my eyes because I didn’t want to see anyone staring at me. I don’t like to think of myself as “disabled”, just less able, but I was made to feel like a problem.’ With their trip marred by Josephine’s humiliating experience, she and Paul decided to complain to Ryanair on their return. ‘I was angry about what had happened and scared it might happen again. I felt I’d been discriminated against. Worst of all, not one person had apologised to us,’ she says.

The airline denied responsibility, blaming their sub-contractor Servisair. Instead of an apology, they offered a £100 gift voucher, which was, unsurprisingly, declined by the Heaths. The couple learned it was Ryanair’s policy to refuse to board disabled passengers if the Ambulift did not arrive in time. Aggrieved, they contacted the Equality and Human Rights Commission (EHRC), the Department for Transport and the Civil Aviation Authority, as well as their local MP. Despite lengthy correspondence, none was able to give the Heaths a satisfactory response or offered any help. So they decided to take Ryanair to court themselves.

I don’t like to think of myself as ‘disabled’, just less able, but I was made to feel like a problem In the summer of 2009, a year after the flight, they took their case to the Small Claims Court (they couldn’t afford to go to a higher court). Paul says it was a frustrating business. ‘It dragged on for two years – during which time we refused the offer of an out-ofcourt settlement to shut us up – before a judgement was given in our favour in June 2011.’ Ryanair lost its appeal against the ruling in October 2011. The Heaths were awarded £1,750, (plus £5,200 for costs). The court found that the Heaths were discriminated against for being forced to use a premium-rate phone line to book the special assistance (that they didn’t receive) and for being charged to check in. Because Jo’s wheelchair had to be labelled and the couple’s arrival at the airport confirmed, an online check-in (which is free) was not possible. In addition, damages were awarded for breach of contract due to the failure to provide the requested Ambulift. An award for injury to feelings was made in respect of the discrimination but not with regard to the breach of contract. The Heaths say they couldn’t have afforded to pursue the case without the free help of their

PEOPLE

Photography: Sharron Wallace

We entirely misjudged the difficulty faced by disabled people in seeking their rights

nephew – who qualified as a solicitor during the process – and the pro bono work of his law firm in the early stages of the case. ‘Despite having the time, energy and some resources to pursue this matter, we entirely misjudged the difficulty faced by disabled people in seeking their rights,’ says Paul. ‘What’s become clear to us is that discrimination against the disabled is taken as a much lower priority than gender or racial discrimination – which is often more difficult to prove – and the awards are generally much smaller.’ The Heaths feel strongly that they were failed by the ‘official’ bodies that are supposed to help people fight disability discrimination. They are particularly critical of the EHRC for failing to take up their case.

The EHRC told MS Matters that it was unable to comment for reasons of confidentiality, but said that people who are dissatisfied with the service they receive should lodge a complaint with them. Josephine says winning the case gave her a sense of closure. ‘I was treated so shabbily,’ she says. ‘I hope that Ryanair has been taught a lesson and that in my own little way, I might have helped other disabled people.’ But, she adds, ‘we’ve only flown once since, to a wedding, and we used to fly all the time. The experience has stopped us going on holiday. I’m very wary now.’

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PEOPLE

Your rights (and responsibilities)

For advice and information

The majority of people with MS who fly abroad do so without incident, but things can and do go wrong, so it’s important to know your rights.

The MS Legal Officer at the Disability Law Service can help with legal enquiries from people living in England or Wales (readers in Scotland and Northern Ireland should contact the relevant Equality and/or Human Rights Commission detailed below). Call 020 7791 9826 or email msadvice@dls.org.uk. The DLS website is at www.dls.org.uk

The main legislation applying to air travel is the Equality Act 2010 (which covers booking, airport services, access to disabled toilets, and much else besides), plus the Terms and Condition of Carriage which appear on the airline’s website (and which form your contract with them) and – if you’re travelling within the European Union – once you’ve boarded the plane, European Community regulations will also apply. Catriona Hauser, MS legal officer at the Disability Law Service, says: ‘You can take up to two pieces of mobility equipment on the plane, so long as they comply with the airline’s safety and security restrictions. For example, some equipment contains wet-cell batteries, which are prohibited. Do check the airline’s list of prohibited items before you turn up at the airport in order to be sure what can be taken on board. Ignorance is no defence. ‘You should make sure you tell the airline of your assistance needs no later than 48 hours before your trip. If you can’t, the airline should still make “reasonable” efforts to assist you.’ For health and safety reasons, you may have to be accompanied by an able-bodied person. This may be the case for somebody who is unable to fasten their own seatbelt or who cannot leave their seat or reach an emergency exit unaided. Some aircraft (such as smaller flights) may have a restriction on the number of disabled passengers they can carry. However, airlines can only refuse a booking from a disabled passenger if accepting it would break safety rules or if the size of the aircraft or its doors makes boarding or travelling physically impossible. If the airline does refuse your booking, you are entitled to be given the reasons for this in writing. If you’re bringing medicines on board, you will need to bring a doctor’s letter in order to clear security.

If things go wrong ... Take advice and make a complaint. If you arrive at the airport and have a problem, or your arrangements aren’t in place, there’s very little you can do there and then other than first to complain to the airline and, if necessary, take legal steps. You have to do this within six months. You can seek advice from a solicitor or from the Disability Law Service, or from the Equality and Human Rights Commission. Write to your MP or make an appointment to see them at their constituency surgery. Contact the media – the Heaths advise people in a similar situation to theirs to contact their local newspaper, radio and television stations.

Short breaks: a guide to short breaks and respite for people affected by MS contains further information on travel and holidaying in general. It is available free from the MS Society website at www.mssociety.org.uk or by calling the Info Team on 020 8438 0799 (Mon to Fri, 9am to 4pm). To talk about anything to do with MS, call the MS Helpline on 0808 800 8000 (Mon to Fri, 9am to 9pm, except bank holidays; Saturdays, 10am to 1pm, 21 April to 20 October) or email helpline@mssociety.org.uk The Equality and Human Rights Commission (EHRC) publishes a guide to air travel. It is available on their website at www.equalityhumanrights.com or you can order a copy by phone or email. The EHRC says: ‘Under European law, if you are disabled or have difficulty moving around you can receive assistance when you fly to and from Europe, including domestic flights.’ The EHRC can deal with complaints about UK airlines and airports in England, Scotland and Wales, and can give free advice on how to get the right service. 0845 604 6610 (England) englandhelpline@equalityhumanrights.com 0845 604 8810 (Wales) waleshelpline@equalityhumanrights.com 0845 604 5510 (Scotland) scotlandhelpline@equalityhumanrights.com All EHRC Helplines are open Monday to Friday, 8am to 6pm. The Northern Ireland Human Rights Commission (NIHRC) can be contacted by phone on 028 9024 3987 or email at info@nihrc.org. Their website is at www.nihrc.org The European Community regulation concerning the rights of disabled persons and persons with reduced mobility when travelling by air can be read at http://eur-lex.europa.eu. Search for 1107/2006.

MS Matters 102

Keeping pain at bay About a third of people with MS are affected by pain at some point. The type and severity varies enormously, but there is much that can be done. Anthony Stone considers the options.

There is not a lot of upside to being told you have MS. At least, as I was reassured by the diagnosing doctor 20 years ago, the condition is not generally painful. And generally speaking, the neurologist was right. But that is scant consolation if you are among the third of people affected.

Pain comes in many colours Before healthcare professionals can help, you need to be able to describe what is taking place in your body; to give a name to the pain. That can be quite hard to do. Just as the Eskimos have dozens of words to describe snowflakes, so people with MS need their own vocabulary to describe the strange sensations they experience. Broadly, MS pain can be grouped into two categories: neuropathic pain, with accompanying sensory symptoms, and musculoskeletal pain. These pains can be described as acute (short-term) or chronic (long-term). Lavender heat-bags that you warm in the microwave are brilliant for general aches and pains. Cheryl

Neuropathic pain Neuropathic pain is caused by nerve damage in the brain and spinal cord. This occurs when myelin, the fatty insulation around nerve fibres, is damaged. Signals become interrupted and this causes a range of disturbed sensations, from minor irritations to intense sharp or burning pains.

MS SYMPTOMS

Musculoskeletal pain Musculoskeletal pain results from living with the stresses and strains MS places on the body. Some muscles, tendons and joints might have to work harder to compensate for others not working as they should. Lack of mobility exacerbates the situation. Mobility supports such as walking sticks and wheelchairs can also cause problems if they are not correctly adjusted. Sitting in a wheelchair, or indeed anywhere, can quickly become uncomfortable if your posture is wrong. Have you tried an electric blanket? Since I fitted one, I sleep better due to the extra warmth for my legs and back. Shaun There is one other major source of MS-related pain, namely spasticity, which is caused by muscle spasms and stiffness.

Name that pain But the starting point remains: describing the pain. I have no idea who coined the phrase ‘the MS hug’, but the first time I heard it I instantly knew what it meant. Until then I had said the feeling of tightness around my chest and stomach (and sometimes my groin and buttocks) felt like I was wearing a girdle. The MS ‘bear hug’ feels like someone has swaddled you in a blanket and is gently squeezing. It feels weird, but manageable. After two minutes, you want the blanket off. The hug has different ideas, though, and seems to hold you tighter in its embrace. After a couple of hours, the invisible straightjacket becomes wearying, psychologically and physically. Some people carry on for many months, or even years, with symptoms of sensory disturbances – those ‘funny’ feelings in hands, fingers, arms, legs, feet, toes, face, tongue, scalp, groin and buttocks, abdomen and chest. Sensations are often

described in terms of pins-and-needles or as being like sunburn. People also talk of dull aches or sharp, electric shocks, as well as tingling, numbness, shivering, or super-sensitive skin. The weft and warp of the invisible MS cloak can make people question whether they are imagining the discomfort. Everyone has their own unique experiences. L’Hermitte’s sign is one of the tell-tale red flags of MS. When you bend your head forward, it feels like you’ve been given a mild electric shock down your back. The sensation can spread into arms or legs. It stops when the head is straightened. I haven’t had trigeminal neuralgia for more than two years now. The episodes lasted for about six hours, with pulsating acute pain down the left side of my face. It lasted about five days followed by extreme burning in the back of the head that lasted for weeks. Conclusion: I wouldn’t wish that kind of acute pain on my worst enemy. Tony While some of these sensory disturbances are hard to describe, there’s no such difficulty with trigeminal neuralgia. Imagine sticking drawing pins in your face. The pain is wincing, but brief and relatively rare. It can come on frequently and may be triggered by the simplest of actions, such as eating or putting on make-up, which is what makes it so distressing.

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There is an emotional dimension to this. Pain, whether chronic or acute, can be wearying. It can lower your mood and possibly your resistance. A vicious circle can be created where one element reinforces the other. All the more reason to address the problem. My last two relapses were painful. The first was like ‘fire ants’ crawling over my face and scalp. In the other, the pain was in my right hand and arm and at times felt like someone was running a blowtorch up and down them. Amitriptyline and gabapentin helped. Sharon

Medication The big guns in the armoury are the drug treatments. People who have acute neuropathic pains, such as the drawing pins of trigeminal neuralgia and other ‘throbbing’ or ‘pins-and-needles’ pains, may be prescribed anticonvulsants like gabapentin, pregabalin or topiramate. Carbamazepine is the most effective drug for pain such as trigeminal neuralgia. If those don’t work, you might be prescribed amitriptyline, an antidepressant, which is widely used for certain types of long-lasting sensory pain. If one drug doesn’t work, there is nearly always an alternative that will bring some relief. As with any drugs, there is the risk of side-effects. Some of the drugs used to treat neuropathic pain can cause drowsiness. Some people report this as a serious consequence that restricts their use. Others say the drugs are a great help in securing a good night’s sleep. If you cannot tolerate a drug, you should go back to your doctor or MS nurse to discuss alternatives, as there is a wide range of drugs available. The drugs used for the treatment of neuropathic pain were all developed originally to treat other conditions, such as epilepsy and depression, but were then found to be effective for pain management. Often, the dosage used to treat pain is different from that used to treat depression. I have just had a really bad relapse: my feet were killing me and felt like they were swollen and freezing cold – but they weren’t. I could hardly walk. I was advised to take strong steroids, but they made me feel terrible and I got a throat infection. I then was put on amitriptyline and it has worked wonders.

What can be done?

Sandra

Your doctor and MS nurse will need to get to the root cause of your pain. The healthcare professionals will always be alert to the fact that the pain might be unrelated to MS and may need further investigation. The best advice is to consult medical professionals. Typically, your health team might prescribe a combined approach featuring one or more of the following: physiotherapy, complementary therapies and relaxation techniques, cognitive behavioural therapy, and occupational therapy.

Musculoskeletal pain can be addressed with over-the-counter drugs such as paracetamol, aspirin and ibuprofen. Because they are readily available, the temptation might be to over selfmedicate. Make sure your healthcare professional is aware. Ignoring the underlying problem can make the pain worse in the long run. Some people say they find cannabis relieves their pain. Possession of cannabis is illegal in the UK; however, Sativex, a medicine derived from cannabis has been licensed in the UK as a second-line treatment for spasticity. At the moment, it has not been approved by the National Institute for Health and Clinical Excellence (NICE). This means it is up to individual primary care trusts, health boards or health trusts to decide whether it can be prescribed on the NHS.

MS SYMPTOMS

Other treatments

Further information

If you don’t want to go down the drug treatment path, there is a raft of complementary therapies. Acupuncture, relaxation, chiropractic, osteopathy, massage, yoga and t’ai chi all have their champions. Acupuncture, in particular, is available through many doctors’ surgeries. Transcutaneous Electrical Nerve Stimulation (TENS) is a procedure in which electrodes are placed on the skin to stimulate nerves. Some people find TENS helps both musculoskeletal and neuropathic pain, though the benefits often wear off quickly. Dr Lorna Paul at the University of Glasgow is using a £75,000 grant from the MS Society to understand how pain affects people with MS and if TENS can be used as an effective treatment. The three-year project includes a small clinical trial.

Pain (MS Essentials 17) is a free publication from the MS Society. Download from www.mssociety.org.uk or call 020 8438 0799 (Mon to Fri, 9am to 4pm) for a copy.

For ongoing, long-term pain, I have learned meditation techniques where I visualise ‘shelving’ the pain to put it ‘somewhere else’ rather than at the fore of my consciousness. Shoshana

Pain clinics If you have on-going or recurrent pain, you might be referred to a pain clinic by your doctor or MS nurse. Clinics find ways to cope with pain and minimise its impact. Specialist teams may include doctors, psychologists, nurses, physiotherapists and occupational therapists. Contact your doctor or MS Nurse for details in your area.

Don’t put up with it Being in chronic discomfort or pain is miserable. With chronic pain, the line between discomfort and pain often becomes blurry. Only when you pause do you realise that your body is alive with distorted nerve signals. Distraction techniques can work well. And if that doesn’t work try something else. There is nearly always something that can be done to improve your situation. I find exercise helps. Learn to relax into the pain. Even when lying, not sleeping, in bed, you can do some yoga stretches. Concentrate on the pain and sort of will it away. Magnesium oil helps. Janet With thanks to Revd Dr Barbara Chandler, Consultant, Rehabilitation Medicine, Raigmore Hospital, Inverness.

Action on Pain Provides support and advice for people affected by chronic pain. Painline: 0845 603 1593 (10am-4pm) www.action-on-pain.co.uk The British Pain Society Provides a list of registered pain clinics in your area, has publications on managing pain and the drugs used as treatments. They also have details of published books on managing pain. 020 7269 7840 www.britishpainsociety.org Healthtalkonline This charity has created a website detailing personal experiences of a range of health issues, including managing long-term pain. Interviews with people living with pain are available in video, audio and written formats. www.healthtalkonline.org Pain Association Scotland A Scottish charity running pain management programmes and support for people with long-term pain, their friends and families. 0800 783 6059 (weekdays, 9.30am to 4.30pm) www.painassociation.com Pain Concern Provides information and support for pain sufferers, those who care for them and about them. Produces a fortnightly podcast about issues related to living with pain, featuring pain specialists. Helpline: 0300 123 0789 (10am to 4pm) www.painconcern.org.uk

MS Matters 102

Debbie Alexander England Council member, Surrey and Sussex

People making a difference Volunteers are the backbone of the MS Society. MS Matters looks at some of the volunteering opportunities now available and talks to two people who are doing their bit.

I have been diagnosed with MS for five years now and continue to work full-time. I decided to join the council as I was feeling in great health and while I was able to, I wanted to volunteer. I also felt it was important to represent younger full-time working people with MS; to show how it can be possible, with help, to continue to work. I’d love to see the MS Society attract more new younger members – so that they can have a voice within it. The communities that have been built up on Facebook and the forums are invaluable and I’d like to see more done. For those people who can’t work, who are lonely or are unable to get around, the internet can be a very friendly tool, whether you are young or old. As a new member of the council I am still in the honeymoon period of trying to learn how to juggle this with my new job and home-life. I don’t have children, so that may make it a little easier for me, and I have a great husband and mother-in-law who help me in so many ways to do things that people normally take for granted.

Support Volunteers Are you a good listener? Do you want to help people affected by MS? Could you point people to local services and organisations? We’re currently recruiting for exciting new volunteer roles at the MS Society. Support Volunteers provide a range of support and information to local people affected by MS. Working with one of our 300 local branches, being a Support Volunteer is a fantastic opportunity to get involved and make a difference. We’re currently recruiting in: Scotland; Wales; Northern Ireland; East Anglia (Norfolk, Suffolk and Cambridgeshire); the north-west of England (Cheshire and Merseyside); and Kent. Other areas will be recruiting later this year or in 2013. Interested? If so, please drop a line to volunteering@mssociety.org.uk or ring 020 8438 0944.

MS Society Councils The councils (Cymru, England, Northern Ireland and Scotland) are responsible for the direction of the Society in each nation. Members are elected annually by the membership. The councils meet four times a year. Meetings are open to members. To find out more, visit www.mssociety.org.uk or call 020 8438 0807.

YOUR SOCIETY

Tony Wilmott

The MS Society wants you

Website Editor, South Suffolk Branch A couple of years ago, I became involved with my local branch as Website Editor. After attending one of the regular monthly meetings, I decided that they weren’t my kind of thing. Only around a third of our membership came along and, typically, the people who attended were older than me. After a few months of discussions with the committee and National Centre staff, among others, I decided to organise our first Branch Social. The idea was a simple get-together in a bar or café on a weekend afternoon. The first session was a bit of a flop in some respects – the only attendees were me, the chair and one other member – but, undeterred, we decided to try another event. This one, in a café-bar in Felixstowe, was more of a success, with about eight people attending, including people with MS, carers and their children. At each subsequent event we got an increasing attendance and we now run an event every month. Our branch covers an essentially rural area, with around eight larger conurbations, so we hold each social at a different venue. Most people who attend are younger and looking for something much less formal and more fun than our regular branch meetings. Everyone who has come along wants us to keep it up!

Do you have some time to spare to take up a role within the MS Society? We are currently looking for volunteers to take up a number of posts. Chair of the Audit and Risk Committee (voluntary post) To take on this role you will need to have a strong risk-management background with recent experience, good awareness of internal control systems and great communication and presentational skills. The role: Ensure the Society’s risk-management processes

are comprehensive and appropriate for the Society. Ensure the internal and external audit functions

are operating effectively and efficiently and recommendations are implemented. Communicate to the Board any serious concern

or issue affecting the governance of the Society or its work for people affected by MS. The average time commitment is three days per quarter. National Treasurer (voluntary post) To take on this role you will need to have a strong financial and analytical background. Recent financial or investment experience is essential as well as the ability to explain complex financial issues. Experience of communicating with a wide variety of people and organisations, along with great presentational skills are also required. The role: Provide financial expertise to the Finance,

Photography: Sharron Wallace

Audit and Risk, and Investment committees and the Board. Understand the accounting procedures and key

financial internal controls to assure the Board that the Society’s financial integrity is sound. Guide and advise the Board on the approval of

Support groups and branches To find out more about the MS Society’s branches and the many and varied social and support groups run by members around the country, visit the Society website at www.mssociety.org.uk or call the Info Team on 020 8438 0799 (Mon to Fri, 9am to 4pm). The MS Society’s Facebook page, Twitter feed, and message boards (on the Society website) are other means of meeting and talking to people with or affected by MS.

the budgets, annual report and accounts and the financial implications of the organisation’s strategic plans. The Treasurer is also a co-opted trustee of the MS Society. The average time commitment is two days per month. For more information or to apply for either of these posts, please email governance@mssociety.org.uk or call Susan George on 020 8438 0862.

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Celebrating the UK’s six million carers Carers Week is when the UK’s six million carers are celebrated and given due recognition. This year’s theme is ‘In Sickness and Health’ and the MS Society is playing a leading role. Carers Week 2012 runs from 18 to 24 June. The MS Society is one of the event’s partners, alongside Carers UK, Age UK, Crossroads Care, Macmillan, Marie Curie, Parkinsons and Princess Royal Trust for Carers. A survey has been launched to find out more about the role performed by carers, who, recent research suggests, save the country some £119 billion a year, while receiving little support themselves. The results of the survey will be published during Carers Week. The survey can be completed online at www.carersweek.org. To find out more about Carers Week, visit the website or call 020 7378 4955. Carewell, a partnership between Bupa, Carers UK and MEND, is a new website designed to encourage and support carers to make positive changes to be healthier and happier. Visit www.carewelluk.org

Stars in your eyes Now in their fourth year, the MS Society Awards reward individuals and groups who make a real difference to the lives of those affected by MS in the UK. Nominations for the MS Society Awards 2012 are now open. As well as recognising dedicated carers, creative fundraisers and inspirational young people, the awards offer an opportunity to recognise supportive employers of those affected by MS on a national stage. Judges are looking for organisations that create an excellent working environment for staff, and show consistent consideration and awareness of the fluctuating nature of MS. They may offer flexible working hours, more regular breaks or generally go above and beyond normal practice to support staff affected by MS. This could be via a company policy or through one person leading the way in understanding and supporting staff affected by MS. Nominate your company or employer now and you could be attending this year’s inspiring ceremony on Tuesday, 25 September at the Royal Garden Hotel in Kensington, west London. Cathy John was one of the winners at the 2011 MS Society Awards ceremony. ‘I was hugely flattered to win the MS Society Media Coverage of the Year Award,’ she says, ‘for a feature I wrote on “coming out” with MS for The Independent, which proved very popular.

‘I was diagnosed with relapsing remitting MS in February 2010. By May of that year I felt compelled to write about my new experiences with MS and raise awareness of the challenges facing those who’re young and newly diagnosed with the condition. As I came to terms with my diagnosis and my symptoms worsened, writing became a vital means of exploring this new terrain I was entering; a way of processing my feelings and learning others’ responses to MS through readers’ feedback. ‘Being nominated and then winning the award, a new category in 2011, was a very welcome validation of my article by the MS community. But also it was hugely satisfying to have my writing, a new endeavour, recognised by a panel of top broadcast and print journalists. On the day itself it was humbling to discover the work of other nominees and a pleasure to see them rewarded with congratulations from the many celebrities present at the event. ‘As the nominations open for the 2012 Awards, I would encourage everyone to think about the individuals, projects and organisations they feel have really made a difference to people with MS in the last year.’ To find out more about the MS Society Awards

or to get a nomination form, please call 01494 671332 or email mssocietyawards@ mssociety.org.uk. You can also make a nomination via the website www.mssociety.org. uk/awards. The closing date for nominations is 27 April. The MS Society Awards 2012 are sponsored by

YOUR SOCIETY

Brambles Respite Care Centre transfered to new owners As MS Matters went to press, Brambles Respite Care Centre in York was transferred to new owners. The MS Society exchanged contracts with MS Respite and Care Services Ltd in February, and they took over the running of the centre at the end of March. Brambles closed temporarily at the end of November while negotiations were underway, but re-opened at the end of February. Bookings are now being taken. Brambles will continue to provide services for people with MS and the existing staff at the centre will be transferred to the employment of the new owners. We have now now successfully transferred three of our four respite care centres â&#x20AC;&#x201C; Leuchie House in North Berwick, Woodlands in York and Brambles â&#x20AC;&#x201C; to new ownership. Agreement has also been reached to transfer Helen Ley in Warwickshire to local charity Castel Froma, which already runs a care centre in Leamington Spa. At the time of going to press, final legal work was being completed before contracts could be exchanged. Castel Froma has committed to continue providing a respite service for people with MS and other neurological conditions at Helen Ley. Bookings for Brambles Respite Care Centre can be made by calling 01293 771644. For more news about Helen Ley, keep an eye on the MS Society website at www.mssociety.org.uk or call the Info Team on 020 8438 0799.

Brambles will continue to provide services for people with MS MS Society partnership helps you take a break The MS Society is working in partnership with Vitalise, a national charity providing short breaks, respite care and other services for people with physical disabilities, visually impaired people, and carers. This partnership helps to support people who want to take a break in one of their accessible centres in Southport, Southampton or Essex. Barbara Todd from Devon and her son Simon, who is her full-time carer, won tickets for an evening of athletics at the Olympic Games in August, a dream come true for both of them. But there was a problem. To be able to take up their prize, they needed accommodation which provided a high level of care and accessibility. Barbara and Simon applied to our short breaks and activities fund for a grant to help. We awarded them a grant to cover the cost of their stay for a week at Jubilee Lodge, a Vitalise centre in Essex, close to the action. This means that they can now take up this once-in-a-lifetime opportunity. Our Short Breaks and Activities (SBA) Fund may be able to help with the cost of your break, whether this is a short break, respite care, holiday or activity. To find out more and apply, contact the Grants team on 020 8438 0700 or email grants@mssociety.org.uk The MS Society publishes a free guide to short breaks and respite. See page 16 for details.

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YOUR SOCIETY

Thrills and spills in Northumberland Following the popularity of their taster weekends last year for people affected by MS, the Calvert Trust team in Kielder, Northumberland, will be running two more activity holiday weekends in 2012. Fully accessible abseiling, zip wire, sailing and archery are just some of the events on offer. A respite care package, including 24-hour care, is available for both weekends.

MS Life promises to be an unmissable weekend

27 to 30 April: MS Adventure weekend (for people

affected by MS, their friends and families). £309 per person or £440 for the respite care package. 22 to 24 June: Young MS carers weekend (for young

carers of people with MS and the whole family). £217 per person (three nights for the price of two). Contact Calvert Trust Kielder on 01434 250232 or email enquiries@calvert-kielder.com for more information.

Submit a resolution for the 2012 AGM The MS Society is a democratic organisation. Every one of our 38,000 members has an equal say in what we do. Our 2012 Annual General Meeting (AGM), which is held in London on Saturday, 15 September, is your chance to have your say. Could we be doing something different that would be of interest to a significant number of members and have a real impact on the lives of people affected by MS? As a member of the MS Society, it is your right to propose just such an idea, in the form of a resolution to be voted on by all the other members at the AGM. The Society’s Board of Trustees has the final say on whether a resolution goes to the members’ vote. Accepted resolutions are printed in the AGM booklet sent out in August, together with a response from the Board and information about how to vote. You or a representative will have to come along to the AGM to speak for two minutes about the resolution and help answer any questions from members. Contact Susan George for a resolution proposal form or if you have any questions about the process by writing to her at Governance, MS National Centre, 372 Edgware Road, London, NW2 6ND, emailing governance@mssociety. org.uk or phoning 020 8438 0862. Make sure you get the form back to us by 12pm on Wednesday, 23 May.

That’s MS Life! It’s not too late to book a place at MS Life, the MS Society’s lifestyle and information event, which takes place in Manchester from 14 to 15 April. With over 40 ‘Living with MS’ workshops, a chance to meet and question doctors and researchers, a ‘Lifestyle village’, a ‘Get Active’ zone, night-time entertainment, family events, a crèche and much more, MS Life promises to be an unmissable weekend. Kaz Laljee was diagnosed with primary progressive MS five years ago went to his first MS Life weekend in 2008. ‘I was also still in the “MS closet” and felt very protective about who knew about my MS and who might see me there,’ says Kaz. ‘However, after going I can honestly say it was a real game-changer for me and changed my life for the better. ‘It was so good to see other people with MS there, from people who had only just been diagnosed to those who had been living with the condition for decades. With lots going on again this year, I can’t wait ... I’m especially looking forward to the spa section!’ To find out more about MS Life and to book your place, visit www.mssociety.org.uk/mslife or call 020 8438 0941.