Target MD 2013 (2 of 4) by Muscular Dystrophy UK

magazine

Target MD Issue 2 of 4 2013

PIP: the questions and the answers

Carers share their stories Hints and tips

Care and caring Campaigning news

Research updates

Fundraising events

Best of the web

Trailblazers

Your independence, our motivation

The Mobility Roadshow 30th anniversary event 27th, 28th and 29th June 2013 Telford International Centre Free admission & parking

In partnership with

test-drives • conversions • adaptations • scooters wheelchairs • sport • cycling • innovation

www.mobilityroadshow.co.uk 01344 750 400

www.muscular-dystrophy.org 03

welcome

The cold winter has certainly continued for far longer than expected but there are at last some encouraging signs that warmer weather is on the way. We are also taking encouragement from the progress we are making in our fight against muscular dystrophy and muscle wasting conditions. There are exciting developments in research where we can see potential treatments for Duchenne muscular dystrophy currently being tested in clinical trials, as well as studies which suggest that exon skipping technology may have the potential to be developed to treat some forms of Ulrich congenital muscular dystrophy.

are closer today than we â&#x20AC;&#x153; We have ever been to a potential

The progress we are seeing follows years of our support for outstanding scientific research and it gives us genuine optimism. We are determined to raise the funds to

â&#x20AC;&#x153;

treatment becoming available...

drive progress as quickly as possible and to make the breakthroughs for which so many people have worked for so long. We are closer today than we have ever been to a potential treatment becoming available and we are determined to accelerate progress as much as possible. We also recognise that people living today with muscle wasting conditions need access to specialist expert care and we are therefore delighted to have won the backing of the Department of Health for a programme to improve health care. The Department has committed more than ÂŁ580,000 of funding over three years to ensure neuromuscular service developments are secured in the newly reformed NHS in England. This is an excellent opportunity to make sure that health care improvements are regarded as a top priority as the NHS reforms are implemented. Through the muscle group campaigns and our very effective local supporters, we will ensure that the required standards of specialist neuromuscular care for people affected by muscle-wasting conditions are delivered. We are also working to secure similar improvements in Scotland, Wales and Northern Ireland, of course, and this work is being led by the muscle groups and local campaigns across the UK. I am pleased to highlight our launch in February of a landmark Parliamentary Inquiry into the high cost of rare disease drugs. Through the All Party Parliamentary Group for Muscular Dystrophy, the Inquiry will explore the challenges and barriers that may prevent early access to potential future treatments. The Inquiry Report will be published in the autumn drawing on statements from expert witnesses and written evidence presented to the Group I must thank you again for all your support and valued fundraising efforts that enable us to maintain the momentum to ensure children and adults have early access to potential treatments and high quality healthcare services.

Robert Meadowcroft Chief Executive

www.muscular-dystrophy.org

Contents Features

News

Regular

Young and caring

Letters

Meet the Malhotras

Talk MD Forum

Update on advocacy

Get involved

Best of the web

10 11 14

A husband who cares Carer’s allowance Caring for the carers

CarePair

Short breaks and respite care

The actor, the director, the inspiration – my father

Care needs highlighted on Rare Disease Day

18 Research updates 18 Mobility Roadshow 2013 19 Sporting success at Lord’s in March 19 All we know about PIP 20 FSH information day

www.muscular-dystrophy.org 05

About us The Muscular Dystrophy Campaign is the leading UK charity focusing on muscular dystrophy and related neuromuscular conditions. We are dedicated to finding treatments and cures and improving the lives of the 70,000 adults and children affected by the conditions.

We focus on funding world-class research, providing practical information, advice and support, campaigning to bring about change and raise awareness, awarding grants towards the cost of specialist equipment and providing specialist education and development for health professionals.

Join 5,274 others and follow us for regular updates on all areas of our work @TargetMD

Interact with us and more than 9,571 fans on our Facebook page at: www.facebook.com/ musculardystrophycampaign

The magazine for supporters of the Muscular Dystrophy Campaign, written and produced entirely in-house.

Advertising enquiries: Richard Walters e: Richard.walters@cpl.co.uk t: 01223 477 428

Editor Ruth Martin Art director Amanda Nee targetmd@muscular-dystrophy.org

Disclaimer

Muscular Dystrophy Campaign 61 Southwark Street London SE1 0HL t: 020 7803 4800 e: info@muscular-dystrophy.org w: www.muscular-dystrophy.org

While every effort has been made to ensure the information contained within TargetMD is accurate, Muscular Dystrophy Campaign accepts no responsibility or liability where errors or omissions are made. The Muscular Dystrophy Campaign does not necessarily endorse the products advertised and no responsibility can be accepted for claims made by the advertisers. The views expressed in this magazine are not necessarily those of the charity. ISSN 1663-4538

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445 Printed on PEFC paper, produced at a mill that is certified with the ISO14001 environmental management standard. Enclosed into a bio-degradeable polybag

Hello,

I’m pleased to bring you our second edition of Target MD for the year, which focuses on care and caring. Our feature covers a number of the different facets of caring and all that this vital support service entails. We meet a young carer, Alaina, who cares for her older sister; we meet Val and Mark, who talk about what happens when marriage and caring become entwined; we bring you information about the Carer’s Allowance, about the NeuroMuscular Centre in Cheshire that offers vital support for carers and a glimpse into life at the Helen & Douglas House in Oxford that provides respite care for families. Since the last edition of Target MD, we’ve held the hugely successful Make Today Count campaign that saw 130 daredevils skydiving at sites across the UK, a flashmob event in Glasgow, bucket collections, dress-down days and cake sales, not to mention a vibrant Asian banquet in Bristol. The colourful photo spread on p29 will give you an idea of just how orange the UK became on Friday 1 and Saturday 2 March. We also introduce you to two five-yearold boys: Thomas Robinson, whose day at Silverstone has made him want to become a racing driver, and Carson Jones, whose day as a Manchester City mascot made his dreams come true. As always, you’ll read about our latest campaigning successes and research updates, as well as news of our fundraising events. Do let me know if you have any thoughts or comments about the magazine, or any ideas for future editions. We always want to bring you the news and stories you want to read.

I’d love to hear from you.

Ruth Martin Editor t: 020 7803 4836 e: r.martin@muscular-dystrophy.org tw: @RuthWriter

www.muscular-dystrophy.org

Letters What do you think? We’d love to hear from you and to fill this page with your letters. Send us your good news, your frustrations, your story ideas, as well as any news you’d like to share with our readers.

Hi, Thank you all for putting on such

good presentations at the Southampton Muscle Group yesterday. I am sorry I had to leave on the dot of 3pm and did not have an opportunity to thank you all. You are doing a great job and it is particularly important at this time when the disabled in general are under such sustained attack on so many fronts. We are assisting in the hunt for service users, health and social care professionals and those from the third sector dealing with all LTCS (lifetime care services) who might wish to become ‘Co-production Champions’ in our joint work to develop person-centred care locally and nationally. If you know of anyone who might wish to be involved please let us know. Best wishes,

Andrew Lowes Secretary Hampshire Neurological Alliance

Hi, Thank you so much for taking the

trouble to post the magazines to us. John looks great in print! And the article was really touching to read. I really hope we get some Mums and Dads contacting us. With very best wishes,

Paul (Dickson)

Hi, I have recently been volunteering

for the Muscular Dystrophy Campaign. Having spent my life up until now refusing to define myself by my condition, FSH muscular dystrophy, it may seem remarkable that I agreed to volunteer with the Trailblazers. However, their passion for their campaigns is something I agree with and I was curious to learn more. To say the experience is invaluable would be an understatement. Firstly, I have the opportunity to improve the skills needed for working in an office and gain an insight into the running of a charity. What’s the most rewarding, however, is being able to support a group of young

campaigners whose quest for inclusion is a story I hold close to my heart. So far I have helped on a number of tasks for the Trailblazers, from inviting members to the next APPG meeting to writing summaries of reports. I have enjoyed being able to speak to Trailblazers about their opinions on access to sport, for the upcoming campaign, and to engage personally with fellow members. If ever you have the opportunity to become a Trailblazer or to volunteer in the office, I would thoroughly recommend it. Exciting things are happening for the Trailblazers – get involved! Best wishes,

Maddy

Thank you

to the Muscular Dystrophy Campaign for all the hard work you put into helping us with Lloyd’s transport case. This will make such a big difference to us, time wise and financially.

Tanya and Neil Carroll

Looking ahead In the next edition of Target MD due out in July/August 2013, we will focus on health and wellbeing. We’ll look at the importance of maintaining both physical and psychological health and wellbeing, and share some examples of how you do just that. If you have any suggestions or stories that you’d like to share with our readers, please do get in touch with us. As always, all story suggestions are welcome. As always, the magazine will also feature our latest news, features and updates that keep you, our valued supporters, in the spotlight. People with muscular dystrophy and related neuromuscular conditions, together with their families and carers, are at the heart of everything we do.

Here’s how you can get in touch with us t: 020 7803 4836 e: targetmd@muscular-dystrophy.org tw: @TargetMD or @RuthWriter write to: The Editor 61 Southwark Street, London SE1 0HL

www.muscular-dystrophy.org 07

The new Avantgarde3 Living ahead!

31 year old Nina is a model, mother, wife and rugby player. She lives her dreams and enjoys life to the full. When posing before the camera Nina emits passion, beauty and radiance that even her wheelchair cannot distract – quite the reverse!

‘I would like to make a difference and hope my actions inspire others with a similar disability, to have the courage to live their dreams’. Following a car accident that changed her life leaving her a quadriplegic, with the assistance and support of family and friends Nina energetically fought her way to regain her old (new) life back. ‘Most important is a healthy self being and feeling of value, whether disabled or not. I have learned to live with change and have become extremely disciplined’ states Nina. ‘Obviously my family and modeling career keep me extremely busy, however, during 2008 I commenced a new hobby and actively and enthusiastically play wheelchair rugby defense for the Maple Panthers. Rugby is like playing chess, only more complicated since the figures move considerably faster!’ Ottobock

0845 600 7664 · www.ottobock.co.uk

Feature

Young and caring

Alaina Fountain is your typical busy 15-year-old. Her days are filled with schoolwork, dance classes, junior council meetings, fashion shows, show rehearsals and chatting to her friends. She wants to study drama when she leaves school. Alaina is full-time carer for her mum and, during uni holidays, for her sister.

laina lives with her mum, Tracy, in East Grinstead and is in Year 11 at Imberhorne Upper School. She has an older sister, Francesca (19), who studies animal sciences at university in Reading. Tracy and Francesca both have facioscapulohumeral (FSH) muscular dystrophy. “I help my mum with things like picking up things she cannot reach, and I steady her while she is walking. Mum has a walking frame and I help her get in and out of her car, and I carry things for her when we go shopping. I make sure our floor areas are always tidy so she doesn’t fall over. This means moving dog toys all the time! I also help her with stairs when we go out anywhere. “With Francesca, when she’s home, I help her get in and out of bed at night and in the mornings; I help her get dressed, and to transfer from her wheelchair on to her commode for showering. Francesca has limited movement in her upper body, so I help her however I can. “One of the challenges of being full-time carer to my sister is that she likes to stay up late, and I have to stay up late with her to help her and get her into bed. I have now picked up this bad habit from her! But with my busy school schedule, I now often stay up late to finish my schoolwork, so perhaps it’s not such a bad thing!” Alaina said. Alaina has been a full-time carer for her mum and sister for the last two years, since her dad left. “I have found myself feeling a lot more strongly about the things they have to deal with, so I’ve joined our local youth council. Our town is not that accessible, so I joined the council to raise awareness about that and perhaps this will lead to some changes being made. I always put my ideas forward about what needs to be done. “Caring for my Mum is very important to me and I like to be able to understand what I have to deal with. I do put my Mum and Francesca first, they are more important to me than anything. Although my number one goal is to get a good job and do something that I want to do, I feel good about helping. For me, I like to be able to show my Mum and sister I love them through doing tasks for them that they cannot do themselves.” Not only is Alaina a full-time carer, but a part-time fundraiser too. As form representative for her year, she suggested that the funds raised from their recent annual Year 11 Prom Fashion Show should go to the Muscular Dystrophy Campaign. “I felt quite proud of myself to get that kind of opportunity, through telling my story, and the school chose the Muscular Dystrophy Campaign as the beneficiary for the show. I also got a mention in the school leaflet. I don’t yet know the amount that was raised, but I know it was a lot!” Francesca was diagnosed with muscular dystrophy when she was six years old,

Pictured from left to right: Alaina, Tracy and Francesca.

and her condition got progressively worse. When she was 15, she had an operation to straighten her spine and after a month in hospital and six months off school, she went into a wheelchair. She now has an electric wheelchair, and a car that she can ride her wheelchair into and drive herself. “Once I finish sixth form, I want to go on a gap year to Florida and work at Disney World helping out with the entertainment. After that, I am really interested in all things theatrical, so I’d like to go to drama school.” “That’s the plan for now anyway,” Alaina said.

n Tracy and Francesca’s condition Facioscapulohumeral muscular dystrophy (FSH) Facioscapulohumeral muscular dystrophy is the third most common muscular dystrophy, affecting more than 1,300 people in the UK (and at least 140,000 worldwide). For some, it can result in weakness of not only facial muscles and shoulders/upper arms, but also of additional combinations from neck, forearms, wrists, fingers, hips, legs, ankles and the back muscles. The degree of weakness or disability can vary widely between different members in a family, and can show even greater variation between people in different families. There is currently no treatment or cure.

www.muscular-dystrophy.org 09

“N

aïveté is a wonderful thing until reality strikes like an earthquake. I think that is the best way to describe our story,” said Neeru, who is the Information Manager at the Muscular Dystrophy Campaign. Mahesh, or ‘Meshi’ as he is known by his family, was diagnosed with Duchenne muscular dystrophy at the age of seven and was in a wheelchair at 12. His family has always tried to ensure he has good quality of life, in terms of his day-to-day lifestyle and having the opportunity to go on holiday to places such as India, Florida and Spain. Until early 2009, Meshi had never had any major issues, apart from colds and flu infections treated with antibiotics. He was only ever admitted into hospital for an ankle operation. “Because he was so well, we sometimes ignored the fact that he had Duchenne muscular dystrophy. The last time he’d been to hospital for a check-up was in 2006 before a holiday, just to make sure he was ok to travel. When he dropped out of uni because he kept getting colds, we were naive and clueless.” said Neeru. During 2009, following a number of colds, Meshi ended up in hospital with respiratory failure. Pammy, who also works with the charity as the Neuromuscular Care Path Co-ordinator and Patient Advocate for Ken, Surrey and Sussex, explained how that experience threw their family completely. “When Mahesh was ill in hospital, we learnt what happens when something goes wrong, and how badly it can go wrong. Professionals did not take on board our experience, or listen to us. “Mahesh had not been transitioned from child to adult services and we thought he was doing well. “We spent a lot of time at the hospital because there were so many things going on. He woke up and could not speak, after he’d been given the tracheostomy. Nurses had no knowledge of his condition, what he could do and what he couldn’t do. We were telling them basic stuff, which we had found out through our own basic research, for example that general anaesthetic is detrimental for people with Duchenne muscular dystrophy. The specialists did not seem to know that.

Meet the Malhotras Mahesh Malhotra is 30 years old. He has Duchenne muscular dystrophy and grew up in Southall with his parents and three sisters. Two of his sisters – Neeru and Pammy – share some thoughts and experiences of caring for a brother with a severe and devastating muscle-wasting condition. “In my role as care advisor, I realise that a lot of people just want someone to talk to and help them bring everything together. That’s what a care advisor does in general. “Getting involved with the charity has given me a different perspective on what other people as carers have as issues with too,” said Pammy. “I chat to a lot of people who are upset and frustrated and confused, not knowing what to do next. I try to help them in terms of what they need to do practically, but also emotionally. Having been through what we’ve been through as a family really helps me to understand people’s needs,” Pammy said. Mahesh’s mum and three sisters had always provided his core care, and they did this because they wanted to and felt they were needed. Pammy and Neeru both said caring for Mahesh was their ‘normal’. “Family members often are the main carers; in our family, we did the caring because we wanted to. It is quite difficult where an ageing parent gives care and no-one wants to change. Familiarity and trust are difficult to replace,” said Pammy. When Mahesh came out of hospital, he and his family decided to look differently at Mahesh’s care needs and, after 18 months of negotiating with social services, Mahesh got a full package for his care needs. He now has 24-hour support. From a personal and professional perspective. “I’ve found that it’s important

Neeru (far left), Pammy (second from right), Mahesh (centre).

members often “Family are the main carers; in our family, we did the caring because we wanted to.

“

to have a positive attitude and take every day as it comes.” Pammy said. Pammy’s advice for newly-diagnosed families is to try and absorb the information as best you can and when you need to speak to someone, contact a care advisor. For Neeru, Mahesh’s illness was not only a wake-up call, it was life-changing. “When Meshi fell ill, it was my push to move into something more meaningful work; life is too short. You’ve got to do what makes you happy; and working as an occupational therapist, then a care advisor and now the Information Manager for the charity has done that for me.” If you’d like to find out more about getting a more comprehensive care package, or would like to get in touch with a care advisor near you, please do contact our Information Team on 0800 632 6352 or info@muscular-dystrophy.org

Feature

A husband who cares Val (53) and Mark (56) Wintle live near Poole in Dorset. Their lives changed dramatically in 2009 when they both stopped work and began an early retirement that looked nothing like they had planned.

ark is a full-time carer for Val, who has mitochondrial myopathy. The two have had to adapt their lives to meet each other’s changing needs; it’s not what they’d planned but they’re making it work for them both. Val and Mark met in 1994 and discovered they both worked for the same company. They got married in 2005, the year that Val had to make a lot of changes to her working life. “Until the age of 32, I led a perfectly normal life, before my condition gradually took hold and robbed me of my mobility and my independence, and affected my eye-sight. “In 2005, I started to work part-time and found I was no longer able to get out of the office in my lunch hour. Now I cannot tend my garden, walk to the corner shop for a pint of milk or prepare a meal,” said Val. Assistance to do these things comes from Mark. Val took early retirement in August 2009 and a month later they made the decision that Mark should take redundancy to look after her. Val has never had any other carers, and both she and Mark have seen this arrangement change the whole dynamic of their marriage. “Marriage is a partnership with equal responsibility. Ours is less so now, as Mark has had to take on more responsibility. I find it so frustrating that I am unable to do my share. For example, we used to do the gardening together but now I just have to sit and watch as Mark does it himself. I don’t know if I will ever get used to it. Mark has to do things that husbands shouldn’t have to do, but he never complains. “Every marriage involves compromise on both sides, but I find that with disability involved, there is more. I don’t have any independence, which I find very frustrating, and I don’t have any choices. For instance, if Mark goes fishing I can’t go out and do some gardening or pop into town. Likewise, if he goes fishing he is aware that I am on my own so he is not gone as long as he would probably like to be. But it is really important that we both have some time to ourselves. “I find it frustrating that I cannot do the housework or cooking, and Mark has had to take responsibility for all of that. “We spend so much time together that we run out of

conversation! All of our hopes for our retirement years have gone, yet I am so lucky that Mark is prepared to care for me. We get on well, so we muddle through pretty well together, even if it is not ideal. There are so many ways that we have had to adapt our lives,” said Val. For Mark, just retiring was a big life change. “And being a carer means I have to adapt what I do and when. The biggest frustration is not being able to travel extensively; Val finds it much too tiring nowadays.” In describing the vital role of carer, Val said everyone has different needs. “Obviously basic needs have to be met but there should also be an emotional element. The role also has to evolve over time, depending on what is required. The carer has to be adaptable and flexible, which is probably often easier with a spouse. It is a big learning curve for us both.” Mark and Val both value spending time on their own, with their own hobbies and interests, to recharge their batteries. Mark’s escape is fishing and writing; he has written four books on fishing. Val is qualified in aromatherapy, hot stone massage, Indian head massage, Indian face massage and reiki. She can still do reiki for herself but cannot do the other therapies, which were once her big passion. “I try to meditate most days. We go to the gym together, where Mark helps me do things. I think that helps us both let off a bit of steam,” said Val.

n Val’s condition Mitochondrial myopathy Mitochondrial myopathy is a collective term for a group of diseases that particularly affect muscle, but which may also affect every other part of the body including the brain and the eye. The Muscular Dystrophy Campaign is funding Professor Doug Turnbull’s pioneering research at Newcastle University into a technique that could prevent the inheritance of mitochondrial diseases.

www.muscular-dystrophy.org 11

Carer’s

allowance

Family members often take on the role of caring and many people might be unaware that if they become full-time carers of someone affected by a muscle-wasting condition, they can claim a Carer’s Allowance. And the good news is that this allowance remains intact while the whole benefits system undergoes major change.

Wolfgang Lienbacher/istock

arer’s Allowance (CA) is a benefit for individuals who care for a disabled person for at least 35 hours a week. To be eligible for CA, a carer must be caring for an individual who is receiving either the middle or higher rate of care component of Disability Living Allowance (DLA) or receiving Attendance Allowance (AA). With the abolition of DLA in April, CA will be passported to Personal Independence Payments (PIP – see article on p19), which will allow carers caring for an individual receiving either the standard or enhanced rate of the Daily Living Component to receive CA. To be eligible for CA, your 35 hours of care each week apply to the care of only one individual, and can include time physically helping that person, supervising them and doing practical tasks for them, such as cooking. Carers are not allowed to add up the hours they care for a number of individuals and claim CA. CA is set at £58.45 a week; it is not means-tested and an individual’s savings do not affect the amount they receive. If an individual works, they must earn less than £100 a week after tax, National Insurance contributions and half of any pension contributions have been taken into account. Carers who care for more than one individual can only claim for one person and if they share the role with another carer, only one carer can claim CA. Carers in this situation will need to choose who they claim for and who claims. A carer eligible for CA can also claim the carer premium when they are in receipt of Income Support, Income Related Employment Support Allowance, Income Related Jobseeker’s Allowance, Housing Benefit or Council Tax Benefit. However, claiming the carer premium will mean that the cared-for individual will no longer be able to claim the severe disability premium. If you feel you’re entitled to CA, you can download form DS700 from the Department for Work and Pensions website or visit your local Jobcentre Plus office. The Muscular Dystrophy Campaign’s advocacy team is dedicated to supporting individuals with a muscle-wasting condition to navigate the benefits system. If you have any questions about Carer’s Allowance, or would like to order an Advocacy Pack that contains all of this information and more, please do get in touch with David Moore-Crouch on 020 7803 4808 or d.moore-crouch@muscular-dystrophy.org

Glossary of terms Disability Living Allowance (DLA) A cash payment benefit to help individuals pay for the extra cost of having a disability.

Attendance Allowance (AA) A cash payment benefit for disabled individuals over 65.

Personal Independence Payments (PIP) Disability benefit replacing DLA as of April 2013.

Income Support A benefit paid to certain people not expected to look for work, including carers.

Employment Support Allowance A benefit for individuals whose capability to work is affected by disability or ill health.

Jobseeker’s Allowance A benefit paid to individual’s who are available for work and are actively seeking employment.

Housing Benefit A benefit to help with the cost of rent or other housing costs.

Council Tax Benefit A benefit to reduce the amount of Council Tax an individual is liable to pay. In some cases individuals can be exempt from paying Council Tax.

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Feature 13

TalkMD forum Our online forum, TalkMD, is a place of open, frank, fun and supportive talk. If you’re affected in any way by a muscle-wasting condition, and you need to talk, please visit TalkMD. As always, for this edition of Target MD, our forum members gave their thoughts and insights on their wide and varied experiences of care and carers. Here’s what they had to say:

Vicki

Petered

Where to begin? I’ve experienced care in many different ways from family to living away from home whilst at college to now being an employer of a team of eight carers. I have had people walk out on me and had care from an agency, that when I told them I no longer wanted their services, they threatened me with legal action and another agency that didn’t always turn up to get me up or put me to bed! These situations sound awful and I don’t want to scare anyone; these were all good learning curves. I have learnt that I am paying for a service and if I am not happy then I am within in my rights to change things. Where agencies are concerned, never be afraid to say you’re not happy with their service or the carer they are sending in. You have to feel comfortable with who is providing your care. As an employer, the way to deal with a similar situation is different; you have procedures to follow. You cannot go straight ahead and change things; you have to give your employees sufficient notice. As an employer you are bound by employment laws from minimum wage to holiday entitlement and PAYE and NI contributions due on your employee’s pay. Whilst this may sound daunting when first starting out, it’s really not that bad. I have been an employer for seven years and I wouldn’t change it. I am in control and that’s the way I like it. I have a great team of carers now. The most important thing is communication between you. If this breaks down then that’s when things can start to go wrong.

Not sure where to start... I have carers who come in each day to get me up and showered and dressed. I’ve used the same care agency for a few years now. They’ve had their ups and downs, and it’s taken a bit of complaining to get things right, but on the whole we’ve settled into a regular pattern now, and it generally works ok. There is the occasional problem if one of my regular care workers is off sick or on holiday, but the agency should (and usually does) cover this. I’ve only had one care worker that I’ve had to ask them not to send again. From what I hear from other people’s experiences, if you’re using an agency, it is worth shopping around to find one that suits you, and be aware that the quality of service does vary widely. You do need to make sure that the care workers are specifically trained in personal care, if that’s what you need.

*TalMD online forum members’ usernames.

Amgmod

My big sister is my carer. At present, I do not need continual care, I am fortunate to be able to sort of manage but without her assistance I’d be a wreck.

Sar78 My experiences are very similar to Vicki’s. I learnt a lot about things when I was living away at university. My care was provided by the CSV organisation (Community Service Volunteers) and I have mixed feelings about it. On the one hand, the volunteers were similar in age to me but unfortunately not all were matched well to the project and a few left after one term. There was a breakdown in communication in

one year and I felt a bit overwhelmed by the bad feeling – like Vicki said, communication is key and I always remember this experience and how ill-equipped I was, I was not the confident and more assertive person I am now that I employ my carers directly. I certainly feel more in control and there has to be flexibility, I think. It works both ways between employer and employee and getting on with the people who are providing care for you is so important, in my opinion. You need to be able to trust people and be happy that they respect you and your home environment but they also share parts of your life and provide companionship at times. My care package gave me independence and meant I didn’t feel I was putting too much on my parents. Also, I wanted to be more of my own person and not have my family looking over my shoulder! Now they would not be physically able to care for me and they have the peace of mind that I have good, reliable people around me.

Woogy Thankfully I don’t have a carer yet. I do get the assistance I need when I need it from one of my younger brothers mostly. Other family members help but, mostly it’s one brother. He works full-time so I have to base chores that need doing around him, which can add to his already long day. He is also responsible for walking my dog, Gwen, and if it wasn’t for him I couldn’t keep Gwen. I can’t imagine a carer would do that. The debt I owe him and the gratitude is immeasurable. It can’t last forever like that though and inevitably I will need more care. www.muscular-dystrophy.org/talkmd

Feature

Caring for the carers The NeuroMuscular Centre (NMC), Cheshire

The NMC, established with support from the Muscular Dystrophy Campaign, provides more than 10,000 carers’ breaks each year, giving vital respite for those living with, and caring for, a loved one with muscular dystrophy.

ue Walker, Support Worker, said that the Centre provides care, support and advice, not only for people affected by muscular dystrophy, but for everyone connected to that person. “When someone comes in for their first assessment, they will come with their carer – who will often be a family member. As part of that assessment we will always inform carers about My son, Lee Donnelly, atte basic support that is available for them; for example, if they are nds the NMC two to three days a week. By atte registered with their GP as a carer, they have the rights to flu nding the Centre, this has enabled Lee a little indepe injections as a priority, and they are seen more quickly when ndence, it has enabled him to make friends with oth infectious, or if they are registered with their employer as a ers who understand the things he goes through, it gives carer, they have legal rights to flexibility around their caring him the opportunity to go out and socialise with his peers, role. A lot of people don’t know these basic starting points,” and this then allows my par tner and I quality time for ourselv Sue said. es, that we feel is importan t to all of us. “There are carer centres all around the country, and we Due to Lee attending the NMC, this enables me to work, giving encourage people to register with them for support, grants financial support to the fam ily, as well giving me som or funding, which will provide financial support for a break or ething outside the family unit. The help, support and information pro emergency help – they can find their local carer centre through vided by the NMC is exceptional and without it, I feel as a fam the Carers’ Trust or Princess Royal and crossroads website. ily we would feel isolated. Lee receives physiotherapy provided at What we do find is that carers rely on us, because of our the NM C that he feels very comfortable with and is incorporated on the days he understanding of their situation, and the fact that they do not attends the unit. always see themselves as carers needing external support. There have been times wh en I have had concerns and “We often chat to the carers when they come in with not known who to contact about situ ations/support I have nee their family/employer member for an appointment, ded . On these occasions the NMC have only been a telephone cal so that they get to know us and feel more comfortable asking l aw ay, and provided answers. They have also assisted Lee in for advice and support. We also have a comfortable area app lyin g for the correct equipment and wh en there has been a concer where carers can take a break when they come in, because n in relation to health issues they hav e always reassured me. they can be here for a couple of hours, we feel it’s important I truly feel that without the that they have comfortable seating, refreshments, internet support given by the NM C, our lives would be completely access, advice and information, and the chance to meet and different and not for the bet ter. Their understanding of our nee talk to other carers.” ds is greatly appreciated. An d this gives us confidence in dealing On a wider scale, the NMC links with local authorities with the day-to-day needs of the family as a unit. looking at a local strategy for carers, to make sure carers are supported in the wider community. Beverley Smith (nee Donnelly “We often are the voice of carers for physical disability, ) and we try and influence local policies and strategy. We try to ensure that the strategies support carers well and we’ll flag up where there are issues. “For us at the NMC, we always see the whole picture: it is never just the person with the condition that we On the web support. Carers need emotional support, and they need www.nmcentre.com to get appropriate breaks. We especially continue that Carers Trust: emotional support through bereavement,” Sue said. www.carers.org/carers-services/find-your-local-service-list

To whom it may concern

Mark Stay/istock

www.muscular-dystrophy.org 15

CarePair putting people together

Russell Smith, 29, (pictured right) lives in Coventry and has an undiagnosed form of muscular dystrophy. He relies on full-time care to lead a full and independent life.

Pei Ling Wu/istock

uss, the oldest of three boys, grew up in Wellingborough and said he never really had a lifestyle that acknowledged his disability in a way that relied on charity support. “I was very lucky to be born into a strong family, who just got on with things. I was disabled and that just meant that some extra things needed doing. Dad is a great engineer so instead of fixing stabilisers to my first bike, he was converting a pedal go-kart to be electric, and building ramps so I could get about,” Russ said. Some of that can-do attitude and wizardry has rubbed off on Russ. When he encountered some issues planning his own care support, and things weren’t working ideally for him, he used his skills and knowledge – having worked in software development and training – and developed an innovative app to change all that. Enter CarePair. “I’ve been living independently all my adult life, with the support of the Direct Payments Scheme. It was this scheme, which plays such a major role in my life, that sparked my ambition to change the way care provision is delivered, making it easier for users. “CarePair is, as far as I am aware, the first app of its kind, and it acts almost like a dating website. It matches carer and user not only by their care requirements, but also by their personal interests, aiming to make the most compatible pairings of people. I’ve worked to create a service that makes a real difference to people in the same position as me; people who have a disability and require care assistance, but who also want to live independently. “Currently, users requiring care assistance are assessed and given funding to employ their own carers. Even though there are no restrictions (apart from legal) on who you can employ as a carer, it can be hard to find people to fill the roles successfully. As carers often spend time with their employers in recreational, family and personal settings, it can be difficult if you have no shared interests. That’s where CarePair works to match carer and user appropriately. “Another benefit is that if a scheduled carer has to cancel at short notice, users can find suitable carers instantly, avoiding the need to hire agency carers at a much greater cost than the Direct Payment budget allows for. Users can also find carers based on location, for example when they are on holiday,” said Russ. CarePair is a brand new, free, service running online and on the IOS platforms as an app on Apple devices such as an iPhone, iPod and iPad. Russ’ research showed that iDevice technology is the most commonly used by people in the disability sector. Once that version has taken off, he is considering the app on an operating system such as Android, Windows or Blackberry. This innovative app is easy to use. All you need to do is register, post, match and live. It’s really as simple as that.

On the web www.carepair.co.uk

Feature

Short breaks and respite care As you’ve read elsewhere in this edition of Target MD, for many families affected by muscular dystrophy and related neuromuscular conditions, becoming a carer often just happens. While many families take great joy in providing care to their loved ones, it is evident that vital support – and regular short breaks – give them a chance to look after themselves and their needs.

any people will say they are just doing what anyone else would do in the same circumstances – and don’t see their caring role as something which impacts on their own time, energy and daily living. Inevitably, it does. For many families, the opportunity to visit a respite centre is not only a lifeline, but also proves beneficial to the health of the caregiver, and ultimately to the person being cared for. Hospices and respite centres around the UK offer carers and families the opportunity to spend time away from home, to recharge and to have a short break from the routine of day-to-day life. Helen & Douglas House in Oxford is one such centre, and Dylan’s family is one such family.

Helen & Douglas House – a world first When a child or young adult has a life-limiting condition, everyone in the family is affected. Coming to terms with a new diagnosis, or a family member’s changing condition, can create many challenges, and families can feel overwhelmed by the choices and decisions they have to make. Helen & Douglas House in Oxford cares for children and young adults with life-shortening conditions and supports their families. Helen House was the world’s first children’s hospice, opening in 1982. Douglas House opened in 2004 as the world’s first hospice specifically for young adults aged 16 to 35. The two hospice houses care for young people and their families from Berkshire, Buckinghamshire, Gloucestershire, Northamptonshire, Oxfordshire, Warwickshire, Wiltshire and parts of London.

Dylan

Dylan (pictured above, with parents Mark and Lisa) is 15 years old and has Duchenne muscular dystrophy. He attends mainstream school, lives in Oxfordshire and has been coming to Helen House for respite care for seven years. The family stay together, at the hospice; they are allocated 16 respite days every year. Dylan has made great friends with a group of boys who also stay at Helen House. They all like to take their respite breaks at the same time now, and can often all be found on the computers in the games room, doing wheelchair races, or sneaking out at night looking for zombies! Dylan and his three friends are already talking about moving up to Douglas House for young adults, in the same grounds as Helen House, when they reach 16. They all want to wait until they can go together. Dylan said that is the best thing about Helen House. “I get to see all my friends... and make new friends.” For Lisa and Mark, Helen House has been a lifeline. “It’s an oasis,” says Lisa. “We just feel that when we walk through those doors your problems are not there. You get that sort of feeling that it does not matter what is going on.” Dylan is very keen to spread the word about living with Duchenne muscular dystrophy and took part in a short film for Helen & Douglas House, so that people can understand what a difference coming to Helen & Douglas House makes.

On the web www.helenanddouglas.org.uk www.togetherforshortlives.org.uk/families/services – can signpost you to a respite centre near you.

News

News Here we bring you news and information, from all around the UK, of our work in leading the fight against muscular dystrophy and related neuromuscular conditions.

Research news

Care needs highlighted on Rare Disease Day The Muscular Dystrophy Campaign’s Chief Executive, Robert Meadowcroft, drew attention on Rare Disease Day at the end of February to the urgent need for investment in the infrastructure for rare disease care, particularly with potential genetic drug therapies on the horizon. Quote in The Independent, he said: “Our knowledge of how to treat people with rare conditions, such as muscular dystrophy and related neuromuscular conditions, has moved on but the NHS infrastructure has not always kept pace. Specialist care and support must be provided at the right times through the lives of patients, particularly the period of diagnosis and throughout the progression of rare conditions, when proper management is required.” Alongside this was a call for more care co-ordinators for people affected by muscle-wasting conditions. This is a key campaigning priority for the charity, which recognises the poor communication that often exists between the different specialists and health professionals involved in the care of neuromuscular patients. Pammy Malhotra, a neuromuscular care pathway co-ordinator and patient advocate said many people were lost in the system:

“

A recent audit of unplanned hospital admissions showed a large proportion of patients were unknown to service providers, and were not accessing a care co-ordinator.

“

The Muscular Dystrophy Campaign is calling for the NHS to increase the number of care advisors – there are currently 31 in the UK – who not only provide a lifeline but can save the NHS money through helping to reduce emergency hospital admission. At the end of February, the All Party Parliamentary Group (APPG) for Muscular Dystrophy launched its inquiry into accessing high-cost drugs for rare diseases. The inquiry will be conducted over the next few months, exploring the challenges and barriers that may prevent access to potential future treatments. To find out more about any of these news stories or latest developments in our campaigning and research work, please visit our website at www.muscular-dystrophy.org or get in touch with us at info@muscular-dystrophy.org

A group of scientists from Italy has used exon skipping technology to restore the production of a protein called collagen VI in a model system of Ullrich congenital muscular dystrophy. The researchers used cells grown in the laboratory to demonstrate proof of principle that exon skipping might have the potential to be developed as a treatment for some people with this condition.

Mobility Roadshow 2013 30th Anniversary Event Telford International Centre (TF3 4JH) 27-29 June – 10 am to 5 pm

This year’s Mobility Roadshow celebrates 30 years of leading-edge technology designed to help disabled people of all ages lead more independent lives. Whether you want to try out new products, test drive, explore vehicle adaptations and conversions, have a go at sport or just find out what’s new in the mobility market – it will all be there. And if you went to the first Mobility Roadshow in 1983 or any others, please send in your favourite stories and pictures for a special Roadshow Memories Album to be published on the Roadshow website. Be anonymous if you wish, but include your contact details and send your entry to memories@mobilityroadshow.co.uk

www.muscular-dystrophy.org 19

Sporting success at Lord’s in March The Muscular Dystrophy Campaign’s Celebrity Sports Quiz 2013, held at Lord’s Cricket Ground on Thursday 7 March, was a resounding success. With Martin Bayfield as Master of Ceremonies, Chris Hollins as Quizmaster, and the Long Room filled with 170 guests, including sports celebrities, there was little doubt that the evening would turn out to be enjoyable and entertaining. Thank you to everyone who was there and who contributed to the success of the evening. A fantastic £110,000 was raised to support the vital work of the charity, in leading research and supporting people affected by muscle-wasting conditions.

All we know about PIP At the end of January, 197 people gathered round their smart phones, PCs, laptops, tablets and iPads and tuned into the Muscular Dystrophy Campaign’s Facebook question and answer session on the new Personal Independence Payments (PIP) benefit set to replace the current Disability Living Allowance (DLA). Hosted by the charity’s Campaigns, Information and Advocacy Officer, David Moore-Crouch, the session lasted two hours and really got people talking. The conversation continued over on our online forum, TalkMD. PIP is a benefit aimed at helping individuals pay for the extra cost of their disability. Like DLA, it will consist of two components: a Daily Living Component and a Mobility Component. Individuals who already receive DLA will be migrated over to the new system from 2015.

Here are some of the questions and answers from that session:

Q A

“How will people be assessed, where their disability differs from day to day? Like with Becker muscular dystrophy, for example?” “Conditions that differ day to day will fall under the rule relating to ‘fluctuating conditions’, which are now considered under the new regulations. If an individual has a fluctuating condition they must choose the descriptor that is likely to apply to them for the greatest proportion of that time.

“What exactly is happening with the walking distance: is it 20m? Is it timed? Will people be tested on this?”

“As things stand, the distance stated in descriptor E of activity 12, ‘Moving around’, is 20 metres. This is currently being debated in the House of Lords and a final decision will be made in a couple of weeks. In order to meet this descriptor, you must show that you cannot walk this distance ‘reliably’. This means: ‘in a timely fashion’, ‘safely’ and ‘repeatedly’. People will be tested if they are asked to attend a face-to-face consultation with an independent healthcare professional.” “I would try to steer clear of using the terms good/bad days. In order to meet a descriptor, you need to show that it applies to your condition 50 percent of the time. If your condition fluctuates

within that 50 percent, you will meet the descriptor that applies for the greatest proportion of the time.”

Q A

“How will this affect myotonic dystrophy, which has many aspects?”

“As you rightly state, myotonic dystrophy varies considerably. How PIP affects an individual will very much depend on how their condition affects them. In general, as myotonic dystrophy is a more slowly progressing muscle-wasting condition, individuals could fall into the bracket of supporters that we are most concerned about. This bracket of supporters will be the most affected by the changes to the mobility component regarding the distance an individual can walk. Under old DLA regulations, you had to show that you were ‘virtually unable to walk’. Under the new regulations, this is a lot stricter and could see many individuals lose out.”

“It states on the moving around section, ‘can stand and then move x amount of metres’. What is meant by ‘stand’ as it is not detailed on what’s meant by standing?”

“According to the terminology of the DWP, to stand means ‘stand upright with at least one biological foot on the ground’.”

News

“But does it not relate to standing from a seated position? Be it a chair/ floor etc?” “No it doesn’t. One of the many issues with PIP is the lack of clarity regarding some of the descriptors. I would assume though that it is from a seated position.” “That’s where the problem is then, isn’t it? Because people are going to ’assume’ that it means something and then end up losing the claim, as it meant something different.” “You are right. But this is a problem that is systematic with the benefits system and why there are so many appeals. My advice is to give as much detail about your condition as possible. Look at the descriptors carefully and describe your condition so that it fits with that descriptor.”

Q A

“Does PIP include breathing problems with regard to mobility?”

“PIP does not include breathing problems regarding the mobility component. However, you would argue that due to breathing problems brought on by mobilising, you would be unable to mobilise x metres safely.”

“When filling in these forms, who is it best to have helping us? I find questions repeated but slight changes confusing and you feel you have always put the wrong answer in the section. All these changes to benefits is so stressful.”

“The Muscular Dystrophy Campaign advocacy team can help you! Or your local care advisor. In my experience,

good medical evidence is the most important factor in ensuring that you receive the correct benefit. Many who work with these claims have no understanding of muscle-wasting conditions. Medical evidence gives them this understanding.”

“I have received higher level DLA for a number of years. Will this change to PIP and will it affect the amount I am receiving now? I get mobility and care allowance, I am 62 will this PIP affect me?”

“I think you could be lucky. I say this because PIP is only for working age (16-64). People already in receipt of DLA will not be migrated across to PIP until 2015. If you hit the age of 64 before you are asked if you want to claim PIP. you will remain on DLA.”

Q A

“If you can walk 20m, but with severe difficulty and pain, and could not do it many times a day, what do the descriptors state about that?” “Severe discomfort is no longer taken into account under the new regulations. We are currently working with Baroness Thomas about getting the terms ‘reliably’, ‘safely’, ‘in a timely manner’ and ‘repeatedly’ placed in the regulations*. Currently they are only guidelines, which means they do not have to be followed by assessors. In your case, you would need to say something like ‘I can walk x metres but, due to muscle weakness in my legs, I am unable to do it safely and reliably or repeatedly’.”

Q A

“For those nearing the age of 64 years, would you advise they remain on DLA or change to PIP? Or do we not have a choice?” “Unfortunately, if you are contacted by the DWP asking to migrate across to PIP, you will have to do so or you will lose your benefits. Whether or not you are better off under DLA or PIP really depends on your condition and how it affects you. From our research some will be better off under PIP but others will not.” “Regarding indefinite DLA, unfortunately indefinite awards do not exist under PIP. All individuals who are in receipt of indefinite DLA will have to be migrated over to PIP. Under new regulations only two or five year awards will be given.” “Regarding the two or five year awards, are they hoping that there will be cures found or that we just roll over and die? For goodness sake, we have this for life, we live it, breathe it, sleep it and it does not improve with the years.”

*Baroness Thomas of Winchester, a Muscular Dystrophy Campaign Trustee, secured a major victory for patients with muscle-wasting conditions concerned about new Personal Independence Payments (PIP) regulations. The Department for Work and Pensions announced in early February that how an individual carries out the activities’ tests will now be protected under law. These changes now mean that legally individuals will be assessed on what they can do ‘safely’, ‘reliably’, ‘repeatedly’ and ‘in a timely manner’.

On the web Guide to Personal Independence Payments (PIP) on the Muscular Dystrophy Campaign website: bit.ly/PIP2013

FSH information day in May Information day

Facioscapulohumeral muscular dystrophy (FSH) Saturday 11 May 2013, 10am – 4pm Following hot on the heels of the successful information day for Ullrich and congenital muscular dystrophy in Daventry at the end of April, we’d like to encourage you to sign up for the Facioschapulohumeral muscular dystrophy (FSH) information day in Daventry on Saturday 11 May. The Muscular Dystrophy Campaign and the FSH-MD Support Group are hosting this information day for individuals and families living with FSH. Guest speakers include Professor Hans Lochmuller, from the Institute of Genetic Medicine at Newcastle University (co-ordinator for the FSH patient registry), Professor Jane Hewitt from the University of Nottingham and Dr Fiona Norwood,

Consultant Neurologist at King’s College Hospital, London. If you’d like to come along, do get in touch with Neeru on 020 7803 4805 or infoday@muscular-dystrophy.org There is also an information day for Becker muscular dystrophy on 15 June. Do check the website for further info.

www.muscular-dystrophy.org 21

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n and Gown 10k The Oxford Tow

Come and join us! Our annual conferences in October are a great place to meet families, find out the latest news from the Muscular Dystrophy Campaign, learn about our latest research from the researchers themselves, and meet neuromuscular health professionals.

Lace up your trainers, don some orange, and come and run with us at this year’s Muscular Dystrophy Campaign Town and Gown 10k in Oxford.

Whether you’re a serious runner, or a fun runner, help us to turn Oxford orange in this chip-timed race.

When you do so, you’ll be helping the Join us in one of the best road races in the Muscular Dystrophy Campaign fight against muscle-wasting conditions, which UK. You and 4,000 runners will have the affect 70,000 people in the UK. Our work unique opportunity to run through the closed streets of Oxford city centre, passing depends on the support of people like you. historic sites and ending in the beautiful University Parks.

Register today: t: 020 7803 4820 e: townandgown10k@muscular-dystrophy.org w: www.townandgown10k.com Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

Photograph: courtesy of Sussex Sport Photography

Sunday 12 May 2013

If you’re a family affected by any muscle-wasting condition, a health professional involved in the care of such families, or a partner charity of the Muscular Dystrophy Campaign, make a note of the details below. You won’t want to miss these opportunities.

National Conference

When: Saturday 12 October 2013 Where: East Midlands Conference Centre, Nottingham

Scottish Conference

When: Saturday 5 October 2013 Where: Beardmore Conference Centre, Glasgow If you’d like to find out more, or register your interest in attending, please do get in touch with Lyn Inman on 01132 301 313 or lyni@muscular-dystrophy.org

www.muscular-dystrophy.org

Update on

advocacy The Muscular Dystrophy Campaign’s advocacy service has made a real difference to many people’s lives. People affected by muscle-wasting conditions have struggled to get the assistance they require to live a full and independent life, and have therefore approached our advocacy service to help them fight for the services, benefits and equipment they are entitled to. In partnership with the prestigious law firm, Hogan Lovells, who provide pro bono legal assistance for patients and families, the charity has dealt with around 120 cases during the past year, where people have received unfair decisions. By writing on behalf of the person concerned, engaging and briefing local MPs and gaining media coverage and legal representation, the Muscular Dystrophy Campaign has successfully overturned many cases, securing more than £832,822 worth of care, support and equipment previously denied.

Levi

One of the charity’s Trailblazers Hannah-Lou Blackall relies heavily on appropriate equipment to allow her to live an independent and fulfilling life. She contacted the advocacy service after her PCT had refused to approve the provision of specialist leg splints, when her current ones were falling apart and causing significant pain. She requires her leg splints in order to be able to stand and transfer and, without these she would be unable to use her wheelchair or leave her home. The Muscular Dystrophy Campaign’s advocacy team contacted the Chief Executive of the relevant PCT and demanded the provision of new leg splints for Hannah-Lou. The PCT hastily arranged a panel meeting where they agreed with this request. Hannah-Lou’s new leg splints arrived within weeks.

Jack

The advocacy team was contacted by Carol-Ann Wood, care advisor for the East of England, with an urgent request for support. Levi has limb girdle muscular dystrophy 2C, along with learning difficulties.

e relies on his family to support him to meet all of his daily living tasks, and has recently been looking for a new property as his current house no longer meets his needs. Levi gave up his current property when he thought that he had successfully secured another property but unfortunately, Levi had misunderstood the situation and was not actually eligible for the property. This left Levi effectively homeless. The council organised temporary accommodation in a local hotel but then decided that this was too expensive. The council told Levi that they were going to move him to a neighbouring authority because the accommodation was cheaper there. They gave him two days’ notice before they would come and collect him to re-house him. Levi and his family

Hannah-Lou

were understandably distraught. The accommodation the council was suggesting was a 30-minute drive from the family home, which would mean that Levi would not be able to rely on his family for the support he requires. It was a race against the clock for the advocacy team as Levi was being re-housed at midday. They quickly made contact with the Chief Executive of the Council, highlighting their duty to provide suitable accommodation for homeless individuals who are considered vulnerable. A meeting was swiftly arranged at the Council with the family and Carol-Ann Wood , where Levi was offered temporary accommodation in a suitable flat situated a mere fiveminute walk from the family home. The advocacy team is now working closely with Council to find permanent accommodation for Levi.

Jack has Duchenne muscular dystrophy. His grandmother contacted the advocacy service after the family could not get a vital adaptation for their home. There was a wrangle between their county council and the local borough council about the nature of the adaptation. The charity’s advocacy team made contact with both parties to resolve the issue. Pammy Malhotra, Neuromuscular Care Pathway Co-ordinator and Patient Advocate for Kent, Surrey and Sussex, met the family and met with the councils, and soon an agreement was reached. The necessary adaptations for Jack’s home, which will cost about £45,000, can now go ahead. “This really highlights the importance of neuromuscular care advisors in supporting the advocacy team. Their support is often successful in pushing a case over the line,” said David Moore-Crouch, Campaigns, Information and Advocacy Officer for the Muscular Dystrophy Campaign.

If you are struggling to get vital adaptations made, or battling to get the benefits, services and equipment to which you’re entitled, do get in touch with our advocacy team on 0800 652 6352 or info@muscular-dystrophy.org

www.muscular-dystrophy.org 23

Target MD and Target Research

Now more than ever, we rely on every penny of your donations to fund vital research and provide support and care for people with muscular dystrophy and related neuromuscular conditions. With this in mind, we‘re inviting you to subscribe to Target MD and Target Research – both to be delivered to you four times a year. That’s right! You will receive Target MD four times a year along with Target Research. And all for an annual subscription gift of just £18. This will help us cover our costs – even reduce them – while ensuring the same editorial quality you’d expect from every issue of Target MD and Target Research. And because they now only go to people like you who really want to read them, and they’re both now produced fully in-house, the Muscular Dystrophy Campaign can free up more funds to spend on further research, campaigning, support and equipment grants.

If you’d like to subscribe to the magazines, please post your details, together with a cheque for £18 made payable to ‘Muscular Dystrophy Campaign’ to Target MD Subscriptions at 61 Southwark Street, London SE1 0HL: I wish to subscribe to Target MD and Target Research for one year, at a cost of £18.

I wish to make a donation of £

Gift Aid Declaration Using Gift Aid means that for every pound you give, we are able to reclaim back from HM Revenue and Customs the tax paid on it – helping your donation to go further. Please tick the box below: Yes, I would like the Muscular Dystrophy Campaign to treat all gifts I have made in the past four years, today’s gift and all future gifts from the date of this declaration as Gift Aid donations. No, please do not claim Gift Aid on my donations. Please tick here if you do not want to receive occasional news, updates and other ways you can help by email, post or phone. We will never pass on your details to third parties, and you can unsubscribe at any time: www.muscular-dystrophy.org/contact

I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for the current tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities and Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for the current tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I have given. Date____________________________________________ Please include a date here, as without a date this form is invalid. Thank you.

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Call us on 020 7803 2867 or visit our website and subscribe online Name of cardholder: via Direct Debit or credit/debit card at www.muscular-dystrophy. Title First name org/targetmdsubscribe Alternatively, send us your details as below. Family name Title

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www.muscular-dystrophy.org

Jogle MD Adam Kirk, 21, a final year law student at Huddersfield University, is going to cycle from John O’Groats to Lands End with friends in August, to raise funds for our charity, in a challenge they have called Jogle MD. “It was a combination of two of my friends’ ideas and my own to come up with the plan to cycle this distance, an extraordinary event given that none of us has ever done anything like this before,” Adam said. They have also been contacting companies for donations, and will hold fundraising events across the UK, to raise money and awareness about their challenge. Adam is also pleased to have the support of his local MP, Jason McCartney, pictured above left with Adam. “A pound these days goes nowhere really. However if enough people put a pound towards our campaign, it will go a lot further than you’d think,” said Adam. Adam was diagnosed with Bethlem myopathy in April 2012, a few months after his father was diagnosed with the same condition. “From the day I was diagnosed, I have not wanted to do anything else other than raise awareness for the charity to help fund research for treatments and hopefully a cure for the disease,” said Adam.

Get involved We have a wide range of fundraising events planned for 2013. Find out more on our website. We’d love you to join in!

The sky’s the limit for this little Blue

arson Jones is five years old. A true Blue, he absolutely loves football. In late January, a big dream came true for him when he ran out on to the field at the Etihad Stadium as a mascot for his beloved Manchester City. Joe Hart, the England and Manchester City goalkeeper, ran on to the field with Carson. After shaking hands with the officials, they ran together towards the goal where Carson had a shot at goal. He practised while the teams were being announced and, as Carson’s shot at goal hit the back of the net and the final team member’s name was read, the crowd roared. “Carson looked so proud,” his mum, Sabrina, said. Carson has Duchenne muscular dystrophy.

Duchenne muscular dystrophy Duchenne muscular dystrophy is a devastating muscle-wasting condition that causes muscles to weaken and waste over time, leading to increasingly severe disability. It almost always effects boys. Find out more at www.muscular-dystrophy.org/duchenne

n Adam’s condition Bethlem myopathy Bethlem myopathy falls under the category of congenital muscular dystrophies. It is a little known muscle disorder, named after the Dutch doctor who first described the condition in 1976. A fault in any of the three genes for collagen VI can give rise to Bethlem myopathy.

On the web Jogle website: www.joglemd.co.uk Facebook: www.facebook.com/joglemd Twitter: @joglemd JustGiving page: justgiving.com/joglemd

Run for us Lace up your trainers and join Team Orange on our range of fantastic running events in 2013.

Belfast Marathon

Monday 6 May 2013

Muscular Dystrophy Campaign Oxford Town and Gown 10k Sunday 12 May 2013

Great Manchester Run Sunday 26 May 2013

Edinburgh Marathon Sunday 26 May 2013

BUPA 10,000

Monday 27 May 2013

Great North Run

Sunday 15 September 2013

Muscular Dystrophy Campaign Cambridge Town and Gown 10k Sunday 6 October 2013

Great South Run

Sunday 27 October 2013

To find out more about registration fees and fundraising targets, please get in touch. And do sign up! When you do, we’ll support you every step of the way. t: 0845 872 9058 (fundraising hotline) e: volunteerfundraising@ muscular-dystrophy.org w: www.muscular-dystrophy.org

www.muscular-dystrophy.org 25

On track with Thomas Thomas Robinson is a happy, positive, friendly and sometimes shy five-year-old. He is always happy to try new things, he loves ‘going on adventures’ and has managed to climb up a couple of really big hills, even though he gets tired and often falls. His love of adventure recently took him to Silverstone, where he had the opportunity to go round the track in a red Ferrari. For a boy who loves anything mechanical and who has a growing collection of Disney ‘Cars’, this was a day Thomas will always remember. Thomas has Duchenne muscular dystrophy. When he was diagnosed with this severe muscle-wasting condition, his parents, Neil and Karen, had never heard of it before and had no family history of it. Neil (40), is an air steward for British Airways at Heathrow and Karen (36) is a graphic designer. They live in Crewe in Cheshire. Neil won a Silverstone day for himself in early December last year and while there, he asked if they undertook any form of sponsorship or charity donations. Silverstone generously donated a ‘Ferrari Thrill’ experience to the Muscular Dystrophy Campaign, which was auctioned at the Celebrity Sports Quiz at Lord’s Cricket Ground in March. Neil was also offered the chance to take Thomas to Silverstone for a drive around the track in a Ferrari. Neil, Karen and Thomas went to Silverstone in February and were greeted by Chris Ward, the ‘Chief Instructor’. After a tour of the facilities, they checked out the main grandstand, race control and Thomas got to stand on the winner’s podium. At the experience centre, they saw all sorts of fast ‘supercars’ – Aston Martin, Ferrari, Lotus, Nissan GT-R. Chris found a helmet to fit Thomas, and asked which car Thomas would like to have a drive in. “Thomas’ eyes lit up, and he chose a bright red Ferrari, just like his hero from Disneys ‘Cars’ films – ‘Lightning McQueen’,” said Neil. Chris strapped Thomas into the passenger’s seat and the car roared off with a very excited Thomas inside and Chris (Thomas’ new superhero!) at the wheel. “Thomas never stopped grinning. He was so excited and we were so pleased for him to have such a fantastic experience,” said Neil. After several laps of the Silverstone circuit, a still-grinning but speechless Thomas staggered out of the car. “It was a fantastic day, and an experience never to be forgotten by all of us. The entire staff at Silverstone were so welcoming, friendly and generous; we couldn’t thank them enough!

On the web www.therobinsonhouse.com

“Normally during a long car journey, Thomas falls asleep. Our journey home after the Silverstone day was filled with Thomas’ non-stop talking about how he is going to be a racing driver – just like Chris!” So far, the condition only affects Thomas’ mobility; he has trouble standing up, running, jumping and climbing stairs, which he can do but not as fast or as steady as his peers. He has a manual wheelchair, which he uses when he has ‘tired legs’ and he has his leg splints on for about 45 minutes each day to stretch his calf muscles further. Thomas’s parents have lots of hope for the future. “Things have changed quite a lot even since 2008 when Thomas was diagnosed, so with the right treatments, lots of support, and hopefully some positive results from the many research projects currently underway, Thomas might be able to lead a more ‘normal’ life,” said Neil. If you’d like to find out more about the charity’s search for treatments and cures for Duchenne muscular dystrophy, as well as the work the charity does to improve the lives of everyone affected by the muscle-wasting condition, please visit our website, call our Information helpline on 0800 632 6352 or email info@muscular-dystrophy.org

Feature

Michael Attenborough (pictured opposite) is the eldest child of Lord Richard Attenborough, the charity’s honorary Life President. Michael tells us here about his father’s excellent work ethic, his commitment to our charity and to fundraising for vital research, and about his wish and drive to keep that momentum going.

The actor, the director, the inspiration –

my father

hat made you decide to get involved in the Muscular Dystrophy Campaign?

My involvement goes back a very very long way. In fact, I first became involved in a branch in Leeds where I was working from 1974 to 79, and actively fundraised with that branch.

Do you have a personal connection with muscular dystrophy? Yes; a connection, in fact, that I knew nothing about. When my father first became involved, it was because he went to a fête that he was opening for a friend of his who was unwell. Quite coincidentally he came across a stall for the Muscular Dystrophy Campaign and started talking to the people on the stall. He learnt a lot about the condition, particularly Duchenne muscular dystrophy, and was thinking about it a lot on his way home in the car. As he approached Richmond Green where we then lived, I ran from the Green across into our yard, bouncing a football. My father said it was really a turning point for him; he looked at me – healthy, vibrant and football-kicking, about eight or nine years old – and it was at that moment he decided he would pitch in and help. He called someone a few days later and the rest is history. So my involvement was unwitting, but largely instrumental in my father becoming involved.

What do you remember of any of the fundraising events he organised? I didn’t go with my father to any fundraising events; I myself got involved in Leeds in the 70s. However, when he was making Gandhi, he was unable to attend the AGM at which cheques from all the branches are presented. He sent a video instead; and his son. So I took his place and stood on the platform and received all the cheques. I thought I knew about the condition, but I learnt a lot more on that day, largely through personal contact. What I found extraordinary was – Photograph: courtesy of Mansfield Chad

probably because I look like my father – the almost idolising view of him clearly a lot of people had, who felt they owed a lot to him. I was besieged afterwards by people who wanted to shake my hand, simply because I was his son. I hadn’t done much for the Group but my dad had done a tremendous amount. It was very moving and very energising to meet these people and to realise quite how much difference my father had made.

Are you inspired by your father? My dad was brought up to believe, by his parents, that we are social animals; we are citizens of the world, that we are our brother’s keeper. He has dedicated a lot of his life to helping people less fortunate. He’s a great believer that words are cheap and it’s no good just talking; it’s a question of getting off your backside and doing. I think I’ve inherited a lot of that too. I have my own pet charities that I regularly subscribe to and help, but the Muscular Dystrophy Campaign will always hold a particular place in my heart. I don’t think that there’s any doubt that of the dozen or so charities that my father has been involved in, this is the one that has meant the most to him.

How did he describe our charity to you? When I was involved in the Leeds branch, I remembered the married couple who chaired the branch from a television appeal my father had done with their elder son. He went up to Leeds and filmed Leeds United Football Club players training and took their son along with him to watch. When I came to Leeds and got to know the branch, I met his parents. By this time, their son was no longer alive and they had another son who also had Duchenne muscular dystrophy. I was incredibly struck by their complete lack of self-pity and sentimentality; they were only interested in finding a cure that would not help their own child but would help generations thereafter and I found that extraordinarily inspiring.

www.muscular-dystrophy.org 27

work as an actor and a director “His is about that communication. He believes there are a number of things that are worth saying because they add something to the sum of human understanding and human society.

“

One of the fundraising events I put in place was a charity premiere of a film my dad had made, called Magic, with Anthony Hopkins. I got a hand-delivered note on the morning of the show from this couple offering their apologies that they wouldn’t be able to be at the premiere because their son had died the day before. I was hugely affected by this. I think the Muscular Dystrophy Campaign was my father’s favourite charity largely because he felt it was a condition that huge numbers of people knew nothing about. Other charities are, on the whole, very well-supported and he got a sense that muscular dystrophy was a slightly marginalised and less known-about condition. So he stepped into a void to become the figurehead of the Group for decades and I think he felt there was a special need there which he was determined to respond to.

The Richard Attenborough Fellowship Fund – why do you think it’s important to support it? The Fellowship Fund in my father’s name has a very specific function. The medical profession has huge pressures on it, particularly in the area of research and if the Muscular Dystrophy Campaign is to continue to push back the frontiers of knowledge about muscular dystrophy [and related neuromuscular conditions], it needs to woo and capture the best up-and-coming researchers. What appeals to my dad, and to me, is that the Fellowship has its eyes very firmly placed on the future; that it’s there to attract young, talented, highly qualified researchers to drive on into the future.

How would you describe your dad as a person? My father is a difficult person to encompass in two or three neat sentences. But I think I can say with a fair degree of certainty that the number of enemies he has you could count on one hand and I don’t think very many fingers would go up on that hand. The reason is that he has no agenda with

anybody. He will make friends with anybody who wants to make friends with him.

s immediately sympathetic, empathetic, “ He’ warm, compassionate and generous-hearted

and I think if you put him in a cell with somebody who didn’t speak his language for a week or so, they would emerge close friends. He just has the ability to communicate with anybody, to get through to anybody.

“

His work as an actor and a director is about that communication. He believes there are a number of things that are worth saying because they add something to the sum of human understanding and human society. So he’s not very interested in himself, he puts other people first. Tony Hopkins remembers something my dad once said to him: that you have to be kind to people because everybody is fighting their own battle. He feels that himself; he gets up in the morning, he knows the battle he has to fight, the causes he’s put his shoulder behind. He’s a doer not a talker, although he’s a communicator – a great communicator. His diary at his busiest would be jam-packed with appointments, meetings, everything he could possibly do to help his fellow human beings. That’s pretty rare, I would say. Early research and clinical trials are hampered by a shortage of researchers and specialists. We identify promising projects and invest in their early stages, which can lead to huge scientific advances. The Richard Attenborough Fellowship Fund is there to drive forward the research he worked so hard to develop, seeing treatments progress to clinical trial for the benefit of families affected by muscular dystrophy and related neuromuscular conditions. If you would like to make a contribution to this Fund, please consider donating online, or do get in touch with us on 020 7803 4816 to find out more. www.muscular-dystrophy.org/richardattenborough

Make Today Count Four days, 130 skydivers, 34 flashmobbers, six collections and a banquet! Make Today Count 2013 raised £80,000 for our Duchenne Research Breakthrough Fund. Between Thursday 28 February and Sunday 3 March, staff, volunteers and supporters across the country were busy raising vital funds and awareness for the Muscular Dystrophy Campaign as part of our Make Today Count 2013 campaign. We’re particularly proud of the 130 thrill-seekers who took a 12,000ft leap of faith and skydived at sites across the UK. In Glasgow the Soundsational choir gathered in a flashmob to raise awareness and funds by belting out ‘Lean on me’ to passers by. Meanwhile bucket collections turned the streets orange in York, Leeds, Nottingham, Blackburn and London for the day, alongside dress-up and down days and cake sales. If you’d like to help us Make Today Count in 2014, do sign up for a skydive next year or organise your own fundraising event. Visit www.muscular-dystrophy.org/maketodaycount2014

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Hi everyone, I’m very happy to be here writing this, as it means I survived my Make Today Count skydive! It was a fantastic experience and I’m thrilled to have smashed my fundraising target. I really would recommend it, so if you or someone you know fancies taking the plunge, registration is now open for 2014 at www.muscular-dystrophy.org/maketodaycount2014 We’ve been busy making some improvements to our online forum TalkMD, so keep an eye out for a new look and some brand new boards. TalkMD is a great place to share experiences, ask questions, and meet other people affected by muscle-wasting conditions, in a friendly and safe environment. So if you haven’t already, please do join our community today www.muscular-dystrophy.org/talkmd – you are always welcome. As always, thanks for sharing your comments, stories and experiences with us online, and please do keep them coming. We love hearing what you’re up to.

Helen Putnam Online Manager

t: 020 7803 4833 e: h.putnam@muscular-dystrophy.org tw: @TargetMD

Michelle Roofe @chelleroofe r @TargetMD our Md wedding favou badges arrived! A honour to be helping such a great charity in memory of fia. Kelly-Marie Stewart @kellymariestewa @ RebeccaGShore one word amazing can’t believe we jumped off the edge of a plane 15,000ft Hun best experience of our lives xxxx #proud xxxx

Behnam Mohajeri @only1beno What a day to remember with @kellymariestewa @craigbigbro1 @laylaflaherty @VfmHorton laughing all day#goodtimes

Hello from Target Research In this issue of Target Research, we take a look into the exciting area of stem cell research. Our main article explains why stem cells are so special, what they do, and why they are important. We report on one of our young scientists who is investigating the importance of stem cells in facioscapulohumeral (FSH) muscular dystrophy and learn how researchers are working towards developing stem cell treatments for people with muscular dystrophy or related neuromuscular conditions. Our second major article focuses on how we choose which research to fund. As a charity, it is our duty to invest wisely the money our supporters raise. As such, we fund only the best quality research. Dr Julia Ambler, Head of Grants at the charity, explains the rigorous selection process our research grants go through and how our families help with the selection. We’ve also got research news from around the world – including preliminary work on the development of exon skipping technology as a potential treatment for some cases of Ullrich congenital muscular dystrophy, and our popular “ask a scientist” section. If you have any burning questions about research into neuromuscular conditions, please get in touch. I do hope you enjoy reading this edition of Target Research.

Neil Bennett Editor, Target Research t: 0207 8034 813 e: research@muscular-dystrophy.org tw: @NBennettMDC

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