headway hoping - MS Society UK

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Living well with MS

AUTUMN 2014 ISSUE 117

MS SYMPTOMS:

COPING WITH LOSS OF VOICE

I’m hoping we make

headway

Mary Wilson on the work of the Progressive MS Alliance

Multiple Sclerosis Society

FLYING HIGH

HELP FOR TRAVELLERS WITH MS

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REAL LIFE Progressive MS Alliance Airport assistance

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AND THE WINNERS ARE…

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MEET THE STARS OF THE MS SOCIETY AWARDS 2014

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NEWS England update

Welcome

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Everything we do is driven by, and made possible by, people affected by MS. Our vision and aims are centred around your needs and we can’t make the change and raise the money we need to achieve these aims without your support. That’s why I’m so pleased we received overwhelming endorsement from you, our members, for our new strategy for 2015-19 at our recent Annual General Meeting. The strategy articulates seven long-term goals which guide our work. The number one goal is developing effective treatments and campaigning for good access to them. See our latest issue of Research Matters which is focused on how we collaborate with others to make the money we invest to find new treatments go even further. Of course, to deliver these ambitious goals we need to raise funds, so can see our new Christmas shop which has already raised in excess of £90,000 this year. With just a few weeks to go until Christmas, we’re confident that with your help, we’ll make our £120,000 target. So thank you to everyone who has helped us this year – whether by donating, fundraising, volunteering, supporting others, or helping us decide our future direction. There’s no doubt we’re stronger together. Michelle Mitchell Chief Executive of the MS Society

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Read more about Michelle and an article about her in Third Sector magazine Tweet Michelle

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Englandupdate

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Struggling to influence local health care?


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Not enough people are given the opportunity to shape the services they receive from the NHS in England, a new report suggests. A report from the Neurological Alliance ,says that 47% of people feel that influencing their local healthcare bodies has become more challenging since changes to the NHS came in. The report makes a range of recommendations to improve the ways people can have their say. It calls on NHS England to develop support, tools and resources to help people influence healthcare

locally and to continue to develop the data available on neurological conditions and services to ensure this is linked to commissioning. It also calls on local commissioners to appoint a ‘Neurological Conditions Lead’ and calls for neurological charities to sign a pledge to work together locally. Arlene Wilkie, CEO of the Neurological Alliance, said: ‘The coalition’s health and care reforms


were intended to bring local people and communities closer to commissioners and decision makers in the health system. As these results show, there is a long way to go. It is vital that the NHS learns to listen to those who experience and understand the reality of living with a neurological condition, in order to deliver better services and outcomes.’ Read more about local health care.

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Englandupdate



Patients lack confidence in England’s care system

A care act is supposed to care - we push for change.

One in three people rely on the care system. But a YouGov survey of more than 4,500 people, commissioned by the Care and Support Alliance (CSA), of which the MS Society is a member, reveals that six in 10 people are not confident they will receive sufficient care. Two thirds of those aged 60 and over in England believe government should be doing more. Support for elderly and disabled people is a big priority for the electorate - who want to see the government spend more. We’re campaigning hard to make sure the government makes a long-term funding commitment to ensure people affected by MS get the support they need when they need it.

We’ve worked hard with the Department of Health to widen eligibility for care and support. We have recommended that the eligibility criteria should be lowered to cover those with moderate needs as currently only people with substantial needs get support. By lowering the threshold, the government would meet the needs of thousands more disabled people - saving money by preventing costly hospital admissions and greater support needs in the future. The consultation is now closed and the government will publish a response and updated guidance and regulations shortly which parliament will then vote on. We’ll be working with the Care and Support Alliance to co-ordinate campaign action on our remaining concerns. If you have any comments, email: [email protected]

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VOLUNTEER FOR US call 020 8438 0700 Watch a film about volunteering with us.

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years of volunteering

Puppy Power

‘There are many ways that people can get involved’ says Daphne Munroe and Betty Essex ‘For example we have a popular yoga group which someone could help out with. Or there’s our discussion group – come and make the tea!’ Betty and Daphne say they’ll keep volunteering, spreading their goodwill and charm to all who meet them, but they have concerns about the future. ‘We don’t want to leave without people to continue our work. We have gained a lot personally over the past 40 years of volunteering, and we’re still full of admiration for all the people we’ve met. We appreciate and recognise all the problems that people with MS have to deal with.’

Julie Thomson, who has MS, and her dog Dodger won the Medium Grade 2 Final at the Dogs In Need Agility Society Show. The show took place on 17-23 August at Suffolk Showground in Ipswich. ‘We also had a number of wins at Dog Vegas in Thetford, Norfolk, in June,’ says Julie. ‘And we have moved up two Kennel Club Grades in as many shows; we are now Grade 3. Dodger and I train with Jacqui Wood at Ace Agility in Glemsford, Suffolk. Jacqui has a special eye for “mobility agility”, indeed, she has truly turned my disability into an ability!’



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Cymruupdate


REAL LIFE

Ease MS symptoms with exercise

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‘Get Active’ shows the power of light exercise in tackling MS. In 2013 we funded an exercise study and over a nine-month trial, participants showed improvements in physical and mental well-being, reductions in fatigue, as well as measurable improvement in their quality of life. It proved that exercise can make a real difference to people with MS. So throughout Autumn we’ve been hosting ‘Get Active’ events to showcase different types of

exercise and how they can improve people’s lives. Working with local branches, Disability Sports Wales and supported by volunteers from Principality Building Society, we hosted three ‘Get Active’ days in Pontypool, Colwyn Bay and Deeside which included boccia, ball, curling, yoga, Pilates, archery and more. Information was available about all of the relevant exercise and

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sports activities in the area. MS Nurses and community physiotherapists gave sessions on the benefit of exercise and demonstrated exercises. ‘Exercise for MS’ DVD. Check out which activities are on in your area in addition to services that your local branch might provide. Also see the Disability Sports Wales website. www.disabilitysportwales.com

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Cymruupdate


REAL LIFE Progressive MS Alliance

Pilates gives me strength

Cardiff Half Marathon heroes

June Draycott enjoys Pilates, and she says ‘it’s kept the strength in my legs, enabling me to do more outdoor walking. Practising Pilates has improved my core strength. It’s hard work initially, but once you get into it, it’s thoroughly enjoyable. In fact, some of us have asked the instructor to push us further over time, but she has to pitch the class at the right level for the group.’ My advice is to do what you can, when you can, little and often. Our instructor has been trained to teach people with MS, so she knows how to work with us and the MS physiotherapist visits once a month to keep us in check! It’s a great way of keeping ourselves fit and mobile without needing hospital physiotherapy. I’d recommend it to anyone.’ Find out what’s on near you.

A special thank you to everyone who took part in the Cardiff Half Marathon –Wales’ most famous run – on Sunday 5 October. This year was our biggest and best entry yet, with over 50 runners expected to raise over £10,000. Our runners took part in the gruelling race, jostling for position with thousands of others as the track weaved through the centre of Cardiff. We were grateful for our supporters at Principality Building Society, many of whom used the Half Marathon as their fundraising challenge. Area Fundraiser, Iestyn Evans, said: ‘Whether you are a regular runner or have never run a long distance race before, the Cardiff Half Marathon is an exciting event for the whole family, so if you missed out this year, you can register next year.’ See photos of this year’s race and register for next year.

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fundraise FOR US Get in touch with your local fundriaisng team. Watch Vince in action.

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Cymruupdate

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HIGH ACHIEVER RAISING CASH FOR MYELIN REPAIR Kate Langwine- Cooke has set herself many fundraising challenges while coping with MS and getting her degree in Criminology. Kate said: ‘When I first heard about the exciting work that was happening at the Cambridge Myelin Repair Centre which is proving that it is possible to rebuild myelin in our nerves, I wanted to do something to help. Although it will take a long time to move from lab to a drug we can all access, it gives me hope.’ Current MS drugs seek to protect the myelin around the nerve cells from damage, but the trial at the Cambridge Myelin Repair Centre was the first to show that myelin could be repaired. Learn more about myelin.

MEET LYNNE HUGHES, NEW COUNTRY DIRECTOR FOR WALES I have always chosen to work in roles in the health service, local government and the voluntary sector to challenge the poverty and inequality that exists in Wales This has included roles in public health in Powys and Rhondda Cynon Taf, a role in youth and community work for Caerphilly and leading Oxfam’s UK poverty programme in Wales.I am looking forward to working with you all to make sure that you get the services and support you need. Whilst this is a challenging time for us all in Wales, with local authorities and the NHS facing tough financial times, I have joined a vibrant team, both UK wide and here in Wales. We will strive to make sure that meeting the needs of people affected by MS is firmly on everyone’s agenda. See Lynne and all our directors.


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Scotlandupdate


FAIRER BENEFITS FOR ALL To find out how welfare reform is affecting people with MS in Scotland, this year we ran a series of Voices for Change workshops. Those who attended told us how changes to the benefits system were causing them stress and hardship. Read the full report on our blog. We submitted our report to the welfare reform committee of the Scottish Parliament and we’re fighting for a fairer system. We’re also working to establish partnerships with local welfare rights organisations to help


INSIGHT Losing your voice View from the edge

people with MS navigate the system. The first service in Scotland is provided by the Citizens Advice Bureau (CAB) in Moray and is funded by the MS Society’s Moray Branch. It provides a dedicated phone number for people with MS and home visits. Alan Beevers, who has MS, helped set up it up. He said: “It’s so important to get help when dealing with stressful situations like this.” Watch a video of Alan


talking about the service. Ring 01343 559 003 to get hold of the Moray service. This is the only MS partnership so far in Scotland, but CAB across the country can provide help with benefits and other issues. Search for CAB near you. During 2015 we’ll be exploring partnerships with organisations across Scotlandlook out for updates on services in your area.

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Scotlandupdate



Volunteering to help others take control

New Director of Scotland

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Meet Joan Wilson, one of our self-management volunteer course leaders “I was diagnosed with MS in 2005, while working as a primary school teacher – I’m now retired. When I was first diagnosed I went into denial and didn’t want to talk about it. But then I saw an advert for volunteer course leaders and decided it was a chance to do something positive. We explore with course participants ways to deal with MS symptoms and stress through techniques such as exercise, relaxation, problem solving and sharing experience. I find the way people manage MS inspiring. Volunteering in this role can be challenging but I feel I’ve benefitted as much as the participants.” Find out how to become a selfmanagement course leader.

With our ambitious new strategy in place it’s exciting time to welcome Mark O’Donnell to lead our work in Scotland. Mark has had a number of leadership roles, most recently on a secondment to the Scottish Government as a Deputy Director in health and social care. Mark is looking forward to delivering the new strategy in Scotland: “It will give us such a strong and clear focus going forward, continuing to drive improvements in treatments and services for people affected by MS.” What’s been the best part of his job at the MS Society so far? “Working alongside our volunteers and the MS community. I am constantly inspired by their achievements, both in raising valuable funds but also in creating a powerful sense of community.” See more about Mark and all our directors.

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Scotlandupdate

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WHEELCHAIR RUGBY

MS IN INVERNESS

Did you know that Scotland has two wheelchair rugby (aka Murderball) clubs, the Caledonian Crushers and the Dundee Dragons? Jason Speirs, who has primary progressive MS, plays for the Caledonian Crushers. The MS Society, with photographer Graeme Allison (who also has MS), went along to a training session and documented Jason and the team in action (it was noisy!). Jason told us: “After my MS diagnosis I couldn’t find any disabledfriendly sports and was getting very frustrated. Then my physio told me about wheelchair rugby. My first session was a baptism of fire – I was knocked out of my chair after five minutes! Sport is galvanising – you feel better for it.” Download our exercise booklet.

Anita Duffy was diagnosed with MS in 1999 and moved to Inverness six years ago. She shares her top tips. 1.The MS Therapy Centre – it’s been good for me physically, emotionally and socially. 2.The MS Society branch – I’m on the committee and I’m also a support volunteer. They’re like family! Email: inverness@ mssociety.org.uk 3.I’ve taken up disabled horse-riding It’s great fun and good exercise. 4.A beautiful local attraction is the Culloden Battlefield Carers get in for free and there are free wheelchairs and scooters that you can use to go around the museum and onto the battlefield. 5.It’s easier to get around here. The pace of life is different and I don’t feel harassed or under pressure.


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NorthernIrelandupdate

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The stars of the MS community


Bumper wins for NI entries in MS Awards Congratulations to Melissa Leavy who won the Young Person of the Year category at the MS Awards 2014. Melissa, aged 14, from Downpatrick was diagnosed with MS two years ago. With the support of her family and friends Melissa has raised more than £5,000 for MS research by encouraging them to take part in fundraisers including zip lines, fire walks and coffee mornings. Melissa also presented a BBC

Radio Ulster Appeal earlier this year, helpingto raise awareness and understanding of MS. Melissa, who attended the ceremony with her mum, said: ‘It feels really good to have won, but the people who have been nominated have also done amazing things. I’d like to continue to fundraise. It was amazing to go to the awards, and I met pop star Elyar Fox which was great!’Melissa’s mum Theresa said: ‘We are so proud of Melissa.

She has faced some difficult and scary MS symptoms but she has coped really well. She is my inspiration.’ Jenny, a Clinical Exercise Specialist, who coaches MS fitness classes, won MS Professional of the Year. JenniferElla Evans, a young carer from Derry, was also highlycommended in the Young Carer of the Year category. Read more about the awards.


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Modernising neurology project

Improvise, adapt, overcome

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The health and Social Care Board and the Public Health Agency are about to start a project to offer clinically consistent care irrespective of where people with MS live in NI. Our Lottery of Treatment and Care report highlighted inequalities in access to MS specialists and services. We’ve been invited to take part and see this as an important opportunity to address these issues. The board said: ‘To date, planning and investment in acute hospital based MS care has been channelled through Belfast Trust as the regional centre for patients receiving specialist MS drug therapies. However, over the years, the delivery of specialist MS services has evolved with local Trusts developing a more significant role in providing care resulting in the potential for variation in access across the region.’

MS Society member Ivan Prue, completed the race in an impressive one hour 38mins. Ivan, who was diagnosed with MS in 2009, is a keen runner and wears his MS Society T-shirt when training to help raise awareness of MS. We really like his MS motto which is ‘Improvise, Adapt, Overcome.’ Go Ivan! Why not sign up for the Belfast City Marathon on 4 May 2015? You can run all 26 miles, do a relay, join the fun run or wheelchair race. Find out more about all of our running events.

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fundraise FOR US Get in touch with your local fundriaisng team. Watch Vince in action.

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ULSTER GRAND PRIX MAKE US THEIR CHARITY PARTNER

ARE YOU ELIGIBLE FOR THE WARM HOMES SCHEME?

We were selected as the official charity partner for the Ulster Grand Prix – the world’s fastest road race – which took place in August 2014. Our fundraising team organised collections, a family fun night and even a special space hopper race to encourage bike fans to make a donation. Tom Mallon, Fundraising Manager, said: ‘Thank you to the Ulster Grand Prix organisers, race fans and MS Society volunteers for helping us to raise this fantastic amount. We really enjoyed being part of the world’s fastest road race and thanks to the generosity of the public, we are one step closer in our race to beat MS.’

THE WARM Homes Scheme is funded by the Department of Social Development and offers people support to improve the fuel efficiency of their homes, tips to reduce energy bills and a benefit entitlement check. The scheme is available to people who own their own home or are a private tenant and in receipt of benefits such as Disability Living Allowance. It is offered on a first come, first served basis and funding is limited so if you think you’re eligible, get in touch with the Warm Homes Scheme by calling 0800 988 0559.


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msnews


People with MS denied benefits

REAL LIFE

Strong evidence that progressive conditions are being misunderstood by benefits assessors.

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New data released in October shows that people with progressive conditions like MS are being put through unnecessary assessments for disability benefits.The figures show that more than a third have been denied full payment of Employment Support Allowance. Instead they have been assessed as fit for work-related activity, implying that they are likely to recover to the point where they can seek employment. Almost

5,000 disabled people have been placed in the Work Related Activity Group despite assessors stating on their reports that the prospect of work is ‘unlikely in the longer term’. Five charities –Parkinson’s UK, Motor Neurone Disease Association, National Rheumatoid Arthritis Society Cystic Fibrosis Trust and us – are calling on assessors to use medical evidence to justify placing anyone with a progressive condition in the Work Related


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Activity Group. Claire Nurden, our Senior Policy and Campaigns Officer said: ‘It is unfathomable that people with progressive conditions who are deemed by assessors to be unlikely to return to work in the longer term are still being told to seek employment. ‘It is vital that additional safeguards are introduced into the assessment process to stop people with MS slipping through the net.’ Read the full story.

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PIP PROBLEMS

NICE…not nice.

The recent legal case challenging changes to mobility criteria for the highest rate mobility component of PIP has been unsuccessful. Under the new rules, if people who have a physical disability can walk 20 metres, they could miss out on the highest rate of the mobility part of the benefit. The previous distance was 50 metres. Over 500,000 disabled people now risk losing this benefit. While the judge was critical of the decision-making process, it was ruled lawful. We strongly support an appeal of this decision and will continue to put pressure on the government to improve the assessment process for PIP. Read more about PIP. If you have any experiences of the PIP process that you’d like to share with us, please email us [email protected]. or take this survey to inform our campaigning.

The National Institute of Health and Care Excellence (NICE), has published a new clinical guideline which sets out how the NHS should manage the treatment of people with MS. There are some significant steps forward that we’ve been calling for. People with MS will now get regular reviews with an MS specialist and multidisciplinary care from a team of professionals. However, treatments that relieve MS symptoms, Sativex and Fampyra – have been rejected on the grounds of not being cost effective. We believe that this decision was based on a flawed assessment process and are calling on them to conduct a full technology appraisal of Sativex which is more robust. Keep the pressure on NICE by joining our Treat Me Right campaign.



More NICE Listen to a podcast on this on the Guardian website.

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REAL LIFE

Can we switch off MS?


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New research into Myelin ‘desensitisation’ shows promise New research results show promise for finding a way to ‘switch off’ MS. New research shows how the immune system could be altered so it stops attacking myelin, (the nerve coating that becomes damaged in MS.) In MS, the body’s own immune cells mistakenly attack the myelin layer surrounding nerve fibres. Some current treatments for relapsing remitting MS work by dampening down this immune response. This new study takes a

different approach called immune ‘desensitisation’. It relies on ‘switching off’ (or desensitising) the autoimmune response to myelin. This is done by giving parts of the proteins that are normally targeted by the immune attack. Gradually increasing the dose of these proteins means the immune system ‘gets used to’ them and stops attacking myelin. This new study reveals the detail of how the autoimmune response can be turned off in an animal

View from the edge Useful MS Apps A period of incapacity

model of MS. By administering the protein in gradually increasing doses, the researchers were able to keep the immune attack switched off. Further clinical trials are now required to investigate if this type of therapy could be effective at slowing or stopping MS progression. If successful, this could pave the way for future treatments for people with all types of MS. Read more about switching off MS.

More Research news See all the research we fund.

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Researchfocus

NEWS England update Wales update Scotland update Northern Ireland update

NEW PILL APPROVED Reducing relapse rates with oral medication



Dimethyl fumarate (Tecfidera) has been approved for use in England and Wales and should be available for people with relapsing remitting MS by the end of November, NICE has announced. Learn more about drug availibility. It was approved for use in Scotland in April and it’s available in Northern Ireland on a cost per patient basis. We expect it to be widely available there later this year. The pill is taken twice a day and has been shown to be more effective at reducing relapse rates than existing interferon treatments. It may also delay disease progression. It will now be available to patients in England and Wales who have active relapsing remitting

MS(usually categorised as two significant relapses in the previous two years). The manufacturers of Tecfidera have confirmed that a patient taking the drug has contracted the rare brain infection Progressive multifocal leukoencephalopathy. As with all MS medicines, it’s important to discuss your options and consider the potential risks and benefits with your MS specialist. For more information on MS medicines and how to access them check out our Treat Me Right website and access to medicines guides.

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MS Matters is all about you

Let us hear your views via email, post, Facebook or Twitter. Not a Facebook or Twitter user? You can still talk directly to other people about MS on our website forums

One Society


around this as we were not prepared for these complications. I would like to hear from others to find out how they have got on after this procedure, especially if they are a diabetic. — David Wallace, Motherwell

My son had injections for spasticity affecting his legs, and he is also diabetic. He suffered complications resulting in him requiring an above-knee amputation. He also became doubly incontinent. It has been very difficult to see the impact on him. As a family, we have struggled with the communication

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REAL LIFE

letters

Intrathecal Phenol injections

MS news

If you’d like to respond to David, please email us msmatters@ mssociety.org. uk and we will pass on your email.

FES alternatives

Whilst your symptom management article in the summer edition did a good job of explaining foot drop and the use of FES to help with this, I think it did a poor job of

explaining the alternatives, including a silicone ankle foot orthosis (SAFO). I have been using a SAFO since 2008 to combat drop foot and it works wonderfully for me. Fasten three Velcro straps and that’s it for the day. The SAFO is not fiddly or uncomfortable and I understand that it is a tenth of the cost of FES.


— Derek Patience

Drug delivery woes I am beginning to tear my hair out about the lamentable state of my privatised medication home delivery service. I have had MS for several years, and, ironically, worked as an NHS manager, where I was business manager for neurology

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onesociety until 2005. I helped set up the home care delivery contract, in Leicester, and looked forward to patients having stress-free delivery of their medications. Perhaps my enthusiasm for making sure the service was excellent was because I knew I might have to

News use it myself one day, which I did from two years ago. I know I am not alone in experiencing a terrible deterioration in service over the past year. In the past eight months alone, my monthly delivery of beta interferon has been so delayed I have run out of medication three

times. I want to secure a smooth monthly delivery, but also agitate to make sure no other patients needing regular medications are exposed to this farce of the free market! Learn how we put pressure on Healthcare at Home.


REAL LIFE

Updates


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Our new strategy

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Find out about our new strategy, which was endorsed by members at this year’s AGM. We are delighted to announce that our members have overwhelmingly endorsed our new strategy for 201519 This marks an important milestone for us, as we now have seven longterm goals which will guide our work, and a clear strategy for how we will achieve them. These goals reflect the hopes and aspirations of people affected by MS, and were developed through extensive consultation across the UK.

England update


Our new goals in order of priority: Effective treatments R esponsive care and support: Preventing MS Quality information A strong community, independent lives S upporting families and carers: G reater certainty about the future

have your say do you want to be on a panel to discuss MS Matters? email us.

See our new strategy

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NEWS England update

MEET THE WINNERS OF THE MS AWARDS


The MS Awards celebrate people who improve the lives of those affected by MS. So many are making a difference, including our supporters and volunteers. Congratulations to everyone who was nominated. The winners of the MS Society Awards 2014 in association with Biogen are:

Read more about all of our winners.

MS Inspiration of the Year: Jack Osbourne (Right) MS Research of the Year: Simvastatin - led by Dr Jeremy Chataway and his team at UCL MS Employer of the Year: Chatfields of Sheffield MS Media Coverage of the Year: Rachel Garnett MS Digital Media of the Year: muMS UK MS Volunteer of the Year: Ursula Moss

MS Young Person of the Year: Melissa Leavy MS Professional of the Year: Jenny Ridley MS Fundraiser of the Year: Anna Mitchell-Martin MS Carer of the Year: Shaun Ryan MS Young Carer of the Year: Corey and Tyler Cullen



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blogs

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“Stranger strangeness”

“What’s in a name?”

“MS in the media”

“No more bad days”

Chris writes: I’ve

Mary writes:

Trevis writes:

Ann writes: I’ve

been thinking about my interactions with strangers since I started using a wheelchair. It’s interesting that awkwardness usually makes people not hostile, but extra-nice. This can be agreeable, or can create difficulties and embarrassments. It’s agreeable when I need help – I encounter friendliness and kindness from a dozen or more strangers. MORE

When is a relapse not a relapse? For me, it’s when it’s caused by fatigue: a big attack that knocks you sideways and doesn’t let you get up again... for weeks. Earlier this year I was trying to deal with increasing weariness by reining back. Fortunately, while visiting my GP on another matter, she gave me the nudge I needed and signed me off work. MORE

When MS is covered in the media in America – if it is covered – it seems to be rather sensational. Words like ‘suffer’, ‘victim’, ‘incurable’ and the like are sure to be in whatever report one might hear or read. Then again, if the news is about a new drug or treatment, terms like ‘breakthrough’ or even ‘cure’ trip off tongues and pages. MORE

stopped having bad days. I break days down into morning, early afternoon, late afternoon, evening. Just because I’m having a bad early morning, it doesn’t mean my early or late afternoon will be bad. In fact, if I have a bad morning, I’m more likely to focus on yoga or going to the gym in the early afternoon, and that means I’m more likely to have a good late afternoon and evening. MORE

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FREE MONEY: WIN £4,000 IN XMAS RAFFLE

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THERE’S STILL time to get in on our Christmas raffle. This year we’ve got even more prizes on offer and we’ll be picking 15 lucky winners. You could win our fantastic £4,000 first prize. Many of you will have had tickets already, but to be sent books of 10, please call 0800 100 133 or email supporterservices@ mssociety.org.uk. The deadline for entries is Friday 12 December and winners will be announced after the draw on Friday 19 December. The spring raffle raised over £65,000 – let’s see if we can beat that! There are loads of fundraising ideas over Christmas and beyond.

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AFTER THE OVERINDULGENCE, THE RUNNING Already looking forward to next year? After the season of over indulgence, what better way to get back in shape than by running for us in one of our spring events. You could take in the capital’s highlights during the London 10,000, run a half marathon in Bath or face the ultimate challenge of 26 miles along Brighton sea front. Sign up for a run today.

RUNNING AROUND WITH A THOUSAND SANTAS Instead of indulging too much this December why not do something a bit different like running around a park dressed as Santa? We’ll even provide the costume for free once you’ve signed up. Best of all, you’ll be raising money for people affected by MS by getting sponsorship from your friends and colleagues. Most runs are 5km or 10km and are relaxed, untimed events. Santa runs take place up and down the country but a few of our favourites are in London Victoria Park on 7 December and just outside Belfast on the 6 December. Visit our website for more information and details on how to sign up. Or call 0847 481 1577 (Mon to Fri, 9am to 5pm).


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THE ALLIANCE GIVES ME HOPE FOR THE FUTURE Earlier this year, Mary Wilson was interviewed for a film to promote the Progressive MS Alliance – a group of international MS charities joining forces to fund research into progressive MS. Jenna Mahoney meets Mary.

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News

felt utter desperation when I was first diagnosed with primary progressive MS,’ says Mary Wilson, who received the news in 2006, aged 47. ‘My father had the same condition throughout my teenage years and I watched him battle the symptoms, only for him to pass away when I was 17 years old. When I was told I had the same disease, I knew there was very little that could be done for people like me, and it scared me.’ Mary has recently told her story in a film about the work of the Progressive MS Alliance. Watch the video.

under the banner of the Progressive MS Alliance and the research projects focus on finding effective treatments for people with progressive forms of MS. Mary told us ‘It’s important because I feel progressive MS is not a priority; it doesn’t get the media attention that other conditions get, but it’s an illness that changes people’s lives and research into it needs funding. My biggest hope is that there will be a breakthrough, I want to prevent the condition from affecting others in the way it has affected my father and I.’

22 new projects

At her last appointment, Mary’s consultant admitted there was nothing more he could do for her. ‘It made me feel like I’d been thrown on the scrap heap,’ she says. ‘I’m on the same muscle relaxant drugs I was prescribed in 2006, and my GP I’ve been told they can’t prescribe me Sativex – there is no funding for it.’ So last year she bought it privately for £432. ‘It worked well, but in reality I can’t afford to pay for the

In September, the MS Society, along with MS charities in the USA, Canada, Italy, Australia and the MS International Federation, with additional support from MS charities in Spain and Denmark, announced funding for 22 research projects in nine countries. The project is part of a £17.5 million investment into progressive MS research over the next five years. We’re working together

On the scrap heap

treatment and so I had to stop.’ Sativex is not approved by NICE and so it’s down to individual health authorities to decide whether they’re willing to fund the treatments. Find out more about our fight to make these drugs available at www.treatmeright.org.uk Mary feels positive about the steps being taken to find treatments for the condition. ‘This work makes sense. The more people who are involved in funding research and sharing expertise, the more they’ll be able to drive the work forward. Anything new like this can give you hope, and hope for the future is what we need. We will be mailing 90,000 people in the hope of raising £250,000 to help us support the Progressive MS Alliance. You can donate here.




Brighter Future appeal This November we are launching the ‘Brighter Future’ Christmas appeal. We will be mailing 90,000 people in the hope of raising £250,000 to help us support the Progressive MS Alliance.

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reallife Getting the best out of airport services



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Gus Alexiou reports from a special assistance open day at Heathrow Airport to see how the service can help people with MS.

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irports represent in many ways, something of a perfect storm of hassles that could justifiably make anyone living with MS question, whether it’s all worth the bother. Long walking distances to gates, sometimes up to half a mile, unpredictable queuing times, a noisy, crowded environment and a sense of venturing into the unknown can all take their

toll on stress and energy levels. So much so for me personally that I actually gave up on flying for quite a few years. It was only later when I started booking ‘special assistance’ at airports that I realised it didn’t need to have been that way.

Special assistance at airports For anyone unfamiliar with the term, special assistance is a service

Losing your voice View from the edge Useful MS Apps A period of incapacity

providing help to anybody that may top flight have an issue negotiating an airport space or boarding a plane. The service can be booked when you book your flight and then accessed at the airport by going to the special assistance desk or by using one of the numerous alert points dotted around.

Dedicated specialists For 90% of the time it is used by travellers who are challenged

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reallife

News If bringing medication in your carry on, bring the original packaging with your name on it. If you can, bring a short letter from your consultant just saying what the medication is used for.

A irports are perhaps not the ideal environment for testing your limits. Holidays are supposed to be about relaxation and taking things easy and it can start before you even get on the plane!



insight Losing your voice View from the edge

in walking distances, but the service is there to support passengers with a range of needs, from vision impairments to passengers with extremely limited mobility. Despite good experiences using it in the past, I always used to think of the service as something of an afterthought for overworked airport staff. Due to the volume of demand, it is actually a dedicated specialist service operated by a separate company running the complex logistics and employing highly trained staff.

Useful MS Apps

A few simple tips


B ook assistance in advance giving as much info as you can about the type of help you think you might need, basing this on how you might feel on a ‘bad day’ S taff can help with lifting and handling but can’t help with using the loo or medical assistance. In this type of situation you will need to have either a travel companion or be able to self-manage until you finally reach your destination.

More Info? Our short breaks guide has more information

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News England update Wales update Scotland update Northern Ireland update MS news

Managing your ms

losing your voice

Research focus

When your ability to speak changes it can lead to communication problems, but there are practical steps you can take to help.

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peaking is a major way of communicating with others. If your ability to talk is altered, this can affect how you feel about yourself and how you relate to others. Speech difficulties can also make social situations awkward or uncomfortable. If people don’t understand your MS they might make assumptions about why you are slurring or speaking louder than usual. It’s not always easy or appropriate to explain,

and some people start to avoid potentially embarrassing situations. Paul Dilligent is 58 and lives in the Guernsey Leonard Cheshire Home, on the Channel Islands and tell us ‘I started having difficulty pronouncing some of my words so I became less chatty, and this led to depression’ Speech difficulties of some kind are quite common for people with MS. They can come and go throughout the day, perhaps lasting only a few minutes at a

One Society


Losing your voice View from the edge Useful MS Apps A period of incapacity

time, and may be a symptom that appears during a relapse. For most people, changes in speech are mild, and don’t stop them from being understood. Many people find practical ways to manage these changes, often working with a speech and language therapist to find techniques that help.

Recognising speech difficulties Sometimes, changes in speech are so small you may not

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Insights notice them yourself. It could be friends or family who are first aware of a change, or your doctor or MS nurse. The most common form of speech problem for people with MS is ‘dysarthria’ . The changes it can cause to speech include: slurred, imprecise or slower speech, sometimes sounding as if you’re drunk, low volume or weak voice, difficulty with resonance and pitch control, sounding like you’re speaking through the nose, and long pauses between words or syllables. Your doctor or MS nurse may refer you to a speech and language therapist to help identify what kinds of problems are occurring.

Speech and language therapists can help They can do tests to see which parts of the speech process are affected. These could include checking how quickly and accurately your lips and tongue can form different shapes or looking at your breath control. ‘Sometimes it’s very hard for me to speak,’ says Paul. ‘I was a member of my local fitness

centre and everyone at the gym took part in a sponsored run to buy me a Toby Churchill light writer (a text-to-speech device with a keyboard which helps with communication) ‘If I’m having trouble being understood, I type in the word or sentence and it will either show it on the screen or say it. It’s helped me re-gain my confidence. I can now make myself understood and I no longer feel isolated.’

Practical tips W hen you need to communicate, don’t try to compete with other noises, such as TVs. M ake sure you have someone’s full attention before speaking. N on-verbal communication – such as facial expressions, body language and eye contact – can help the listener to understand you. I f a conversation goes on for a long time, you may find that your speech can become less clear. Explain that you need a break before

starting the conversation again. If you have problems remembering what you are trying to say, take your time and use notes if necessary. T ry to remain relaxed, take regular pauses for breath, and avoid rushing. I f you can laugh about things, both you and the person you’re talking to may feel less anxious about it. I f you feel self-conscious, remember that other people may not be as aware of your speech difficulties as you are. I f you have trouble being heard on the phone, something as simple as raising the volume can help. Or try alternatives such as emails or texts, either by mobile phone or text phone. G ood posture can help you to speak more easily. A physiotherapist can help and you can also dowlnload our factsheets on posture and movement.

resources A ssistance Card to let people know you have MS and may have difficulties with your speech B ooklet on Speech difficulties H elpline: helpline@ mssociety. org.uk. Watch our video to show how the Helpline can help you Th e Disabled Living Foundation has a ‘communication’ section

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view from THE edge

Research focus

MS and dangers of false hope

One Society

Our correspondent, whose husband ‘X’ has severe MS, explains the frustration of people who are not ‘in the know’ giving out false hope to those affected by MS.

Losing your voice

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Our correspondent, whose husband ‘X’ has severe MS, explains the frustration of people who are not ‘in the know’ giving out false hope to those affected by MS. ‘I suspect this is a scenario familiar to anyone with severe MS: you are made aware of a positive piece of news about MS or related issues. It often arrives via a third party who

can’t wait to pass on something they believe will cheer you up. I first identified this ‘syndrome’ when attending a council-run moving and handling course. The trainer demonstrated every move on X with the comment: ‘You need two people for this.’ When, eventually, I pointed out that I didn’t have two people, only me, there was a startled pause followed by: ‘Oh. Mmm.



See what you mean. I’ve called it the ‘Oh. Mmm. See what you mean’ syndrome ever since.

Sex and intimacy It also regularly occurs in relation to sex and intimacy, for example: ‘Intimacy and Sex strengthens relationships and makes us feel valued and loved and you can have this, despite everything, you just

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have to adapt… Oh, actually, you can’t.’ Last issue’s ‘View from the Edge’ correspondent was the one of the few who has frankly admitted that, for him and his wife, it is a case of no sex, not now and not ever; for some of us, myself and X included, it’s not just no sex, even cuddles are virtually impossible. But you would never know about that when reading most of the material available.

Too much positivity? Why this tendency to look on the bright side? I think it is because, on the whole, human beings are an optimistic lot. And MS Matters has, at least over the past few years, embraced this approach. I seem to recall that, in stark contrast, in the early years following X’s diagnosis, the magazine concentrated on the more negative aspects and the MS Society ran advertising

campaigns involving scary posters featuring wheelchairs. Now, of course, it’s all very different and, indeed, this column was born out of a backlash from MS Matters readers that what was appearing in every issue didn’t reflect the experiences of those severely affected.

A plea from the heart So I end this reflection with a plea to everyone who might write or speak about MS to remember that a positive message can cause great hurt when it is trumpeted without qualification, to those of us for whom it’s just not a runner. It marginalises us even further, not just from society, but also from our peers in the MS community. Please think: ‘How would I feel if this was of no use to me?’ and act accordingly. Please don’t end up saying: ‘Oh. Mmm. See what you mean.’




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News England update Wales update Scotland update Northern Ireland update MS news Research focus

TECH REVIEW

One Society

Reviews of the best ms apps


insight Losing your voice

Steve Woodward describes his top MS apps – with some help from the MS Society’s Facebook friends. Steve has found writing his blog to be therapeutic. He describes it as ‘an online-diarycum therapy for a young (ish) man chronicling his life with MS’. Steve says mobile apps have also helped him on his MS journey. The word app is short for ‘application’, a special type of software program, typically used on a smartphone or mobile devices such as Androids, iPhones, BlackBerrys or iPads.

Some are free and some are paid for. There are thousands of apps for managing health conditions. Steve says: ‘I-Inject does lots of helpful things – reminding you to do your injection, emailing info to your doctor, organising any oral meds, recording reactionsetc. The main thing I use it for is to track injection sites, making sure that these are rotated regularly – like most people, I have my ‘favourite’ sites

View from the edge Useful MS Apps A period of incapacity

which I could happily keep going for –this keeps me on track. After talking to Steve, we thought it would be a good idea to ask our people on Facebook and Twitter which apps they use – and they weren’t slow in giving us their tips. They fell into a few categories: medication, memory and managing…

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MEDICATION MedNotesTP Track injection sites. MediSafe Helen is reminded when to take tablets, and when to order repeat prescriptions. Shows how many of everything she has left. Symtrac Sharon was part of the development team for this and says it’s really useful to keep track of how she feels, meds, neurologist details and more.

ABOUT STEVE Steve Woodward is 41 and is Head of Marketing at a dancefocused arts venue in the East Midlands. He was diagnosed with MS in 2005.

MEMORY

MANAGING

Google Keep Rob says this is brilliant ‘for those of us whose memory is a touch flaky at times, as it’s great for quick reminders and lists’.

Google open mic+ John uses this app as it turns his phone into a voice-activated device.

Med Helper Nicky uses Med Helper to monitor both scheduled meds as well as the‘take-as-needed’ ones.‘You can store all your prescriptions in it, and more, but I mainly use the reminder feature for my dailies and the medication log.’ Pillbox This is good for keeping track of your meds and you can set alarms to remind you to take them – fantastic app.

Take a Break This free app helps Rae to relax for power naps. Brainwaves ‘Brainwaves’ for relaxation. Myfi tnesspal This has helped Alex to lose more than a stone and increase his mobility.




Systmonline This app is linked to Charlotte’s GP surgery. ‘I am able to check, book and cancel appointments or request a repeat prescription.’ CareZone Sarah uses this app, a private, secure place to manage and share information associated with caring.

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viewpoint

Research focus

The wrong side of the bed

One Society

Anthony Stone reflects on a period of incapacity which left him in bed for several days.

Losing your voice

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y recent experiences gave me an insight into what would happen if I develop severe MS.I spent four days immobile, most of this time in bed. I have had MS for 20 years, the past 10of which have been secondary progressive. I have adjusted to the wheelchair, having the many neurological nasties that are part and parcel of the condition. But, until this

flare-up, I’ve never been so paralysed that I couldn’t move much from the neck down. The first red flag was when I woke up in the night to go to the toilet. The return journey can take a while and the harder I force my muscles and sinews to do my bidding, the weaker I become. That’s when I ended up making a controlled collapse to the floor. This is how I knew I was due some downtime.



The duvet was as heavy as a mattress In the morning, when I woke, I tried to get out of bed. Usually, even when I am quite badly affected, I still manage to slide out from under the duvet and, once onthe floor, begin the process of scraping off the barnacles and getting ready to face the world. But that day, it felt like the duvet was as heavy as a mattress. My legs and

need to talk? call our helpline on 0808 800 8000 or email us.

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NEWS England update Wales update Scotland update Northern Ireland update

arms wouldn’t move. I tried to turn by throwing my shoulders and making growling noises. Surprisingly, this didn’t help. Lying in bed on my back, hour after hour, was not restful.I was aware of the particular pressure on my heels. There was little to distract from the jangled pins and needles that covered me from my bum to the tips of my toes. My legs were throwing spasms in protest. Not being able to move in bed can quickly lead to pressure sores. If you can’t manage to reposition yourself, it’s important to have somebody to help you. I am so lucky that I do.

more than half full. This episode was an unwanted reminder that there was a leak in my glass. I made a mental note that when I felt stronger, I would talk with my wife about my future plans –just in case. I want everybody to be clear about my wishes. Over those four days and nights I thought of all the things I still wanted to do. I promised myself that, as soon as I felt stronger, I would never waste a single day ever again.If only that were true.




This wasn’t meant to be happening, not yet. ABOUT ANTHONY Anthony Stone, 51, is a civil servant and lives in London with his wife and two children. He has had secondary progressive MS for 10 years.

I wasn’t prepared for the effect my sudden incapacity had on my family. I could see their anxiety and confusion. This wasn’t meant to be happening, not yet. My glass is usually

WATCH ANITA ROSE TALK ABOUT LIVING WITH THE EFFECTS OF MS

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