Open Door Quarterly newsletter of the MS Trust
February 2017
25 YEARS OF
MS S
PECIALIST NURSING
How you can help the MS Trust make even more of a difference in the next 25 years Also in this issue Stem cells and MS: balancing the hope and the hype
Could new technology make MS rehab more accessible?
Childhood MS: our new project to help young people and their parents
New drugs for progressive MS
Even the
small things add up to make a difference
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From cake sales to collections, fundraise your way and help to make a dierence today for everyone with MS visit mstrust.org.uk/ideas email fundraising@mstrust.org.uk or call 01462 476707
Contents
Welcome to the February Open Door ...and a belated happy new year to all our readers and supporters! As you will see from our cover story in this issue, 2017 marks the 25th anniversary of the first beginnings of MS specialist nursing in the UK. I know that some of you will have memories of what life with MS was like before then. We know all too well that, without specialist nurses to help them manage their symptoms, people often felt abandoned and left to deal with sudden, unpredictable changes by themselves. We hope you will agree that we have made huge progress in the last 25 years. At the MS Trust we are very proud of the part we have played, thanks to your ongoing support, in developing, training and and campaigning for MS specialist nursing, to the point where we now have over 240 nurses in the UK. However, we’re not resting on our laurels. We know that’s still not enough. Our research published last year showed that two thirds of people with MS in the UK still live in an area where there aren’t enough specialist nurses. We’re more determined than ever to make sure that no one has to manage MS alone, and we will continue to build on the progress of the last 25 years. We’re very excited about the pilot phase of our specialist nurse programme beginning this spring. This will see us work with two NHS trusts in urgent need of support to recruit, train and fund new nurses. We hope this will lay the foundations to develop specialist services that work for everyone affected by MS. Find out more about our work and how you can get involved on p11. As the green shoots appear and the evenings start getting lighter we’re also very excited about the annual MS Circuit Challenge held on 21 May at Goodwood Motor Circuit in West Sussex, organised by our indefatigable supporter Kenny Smith. We’re proud to be involved with such a fun day, that’s fully accessible to everyone affected by MS. We’re always looking for activities to involve as many people as possible. So we’re looking forward to our new event, the Superhero Tri, which takes place in Windsor this August (see p23). It’s part of a packed calendar of events we have planned for this year – you can see the full range at mstrust.org.uk/ events. We hope to see you at one of them in 2017! Open Door has always been free to our readers, but it costs us £2 to produce and post each issue to you. Pam Macfarlane If you’d like to donate to Chief Executive, MS Trust cover these costs text OPEN44 £2 to 70070
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News Proposed changes to the drug approval process, winners of the 2016 QuDos awards, the latest on our specialist nurse programme, plus an opportunity to get a guided tour of London while raising funds for the MS Trust!
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11
Research update The latest research on new drugs for progressive MS and whether people want to know about the future course of their MS
Guiding lights To celebrate 25 years of MS specialist nursing, we catch up with some of the first MS nurses to find out how care has changed during this time, and the challenges we still face to ensure nobody has to manage MS alone
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Balancing hope and hype
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Focus on childhood MS
One year on from the Panorama programme on stem cell therapy in MS, we speak to Dr Eli Silber and Professor John Snowden about this controversial treatment
With an increasing number of young people being diagnosed with MS, Open Door visits Great Ormond Street Hospital to find out more
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New technology in MS rehab Dr Lorna Paul reports on how new technologies might make rehab more accessible, sociable and fun
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Get involved How one London business is making a difference for people living with MS, why taking part in a half marathon is helping Heather Alden deal with her MS diagnosis, and a round-up of opportunities to support our work
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15 minutes with Trudi LampartMacdonald Trudi tells us about why she decided to skydive for the MS Trust, the thrill of ‘freefalling above the clouds’ and how she has adapted to life with MS
Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353 Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Affected by any of these news stories? Call our info team: 0800 032 38 39
News
Keep up to date with the latest MS news by signing up for our weekly email round-up mstrust.org.uk/newsalerts
For full references see mstrust.org.uk/news
Proposed affordability test could limit the availability of new MS drugs Budget impact test could mean new MS drugs are considered too expensive by NHS England Proposed changes to the drug approval process could mean that new treatments that have been approved by NICE could be restricted by NHS England if their total costs exceed ÂŁ20 million in any of the first three years of its use in the NHS. NHS England and NICE have been consulting on their plans as part of what is seen as a broader move to cut costs in the NHS. As a member of the Specialised Healthcare Alliance of patient organisations, the MS Trust has responded to these proposals. We have made it clear that we are completely opposed to any restrictions on drugs that NICE has independently assessed as being cost effective. At the moment, NICE tests all new drugs for value for money, considering the potential benefits of a new drug in relation to its cost. They do not test how much the NHS can afford to pay for the drug. NHS England believes that special arrangements should be put in place to manage the budget impact of particularly costly new treatments in order to avoid compromising access to other forms of care. It is not yet clear how these changes will affect new MS treatments. However, we are concerned that they could prevent
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thousands of people with MS from accessing the treatments they need. This includes treatments for MS that are currently in the pipeline for appraisal, including ocrelizumab, which is currently being reviewed for licensing in Europe as a treatment for both primary progressive and relapsing MS. As Open Door was going to press the formal response to this consultation has not yet been published. The MS Trust will continue to stand up for the right of people with MS to get access to drugs which can make a huge difference to their long-term health. To Read more about MS stay up to date with the drugs in the pipleline in latest developments on Research Update on p8 these proposals sign up for our news alert at mstrust.org.uk/sign-up
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Hollyoaks character diagnosed with MS Channel 4 soap Hollyoaks has recently featured an MS storyline, with Nancy Osborne diagnosed with the condition. Nancy (played by Jessica Fox and a character on the show since 2005) has struggled with the symptoms of an unknown illness over the past few months. Since then we have seen her experience numbness, spasms and pins and needles. Nancy has now been diagnosed with relapsing remitting MS. When we posted about the storyline on the MS Trust Facebook page, we received a huge response. Although some people questioned whether such a serious condition would be handled in the right way, most people welcomed the news and were pleased the condition was being highlighted on primetime TV. No matter how thorough producers are when researching a storyline, there will always be issues portraying such a complex condition in a drama. Everyone’s experience of MS is different and the challenges Nancy faces are unlikely to be representative of everyone with relapsing remitting MS. There will be things that irk people about the storyline, no doubt, but it will also get people talking about MS and hopefully help them understand the intricacies of it a little better. Follow reaction to the Hollyoaks storyline and keep up to date with all the latest news from the MS Trust on our Facebook page: facebook.com/mstrustuk
For more on all symptoms, drugs and treatments see our A-Z of MS: mstrust.org.uk/atoz
NEWS Bringing new MS nurses to areas that need them most
Positive trial results published for progressive MS drugs Encouraging news for people with progressive MS following the latest studies Results of studies of ocrelizumab and biotin have been published, and are the first large scale studies to report a reduction in the build-up of disability in progressive MS. These studies represent the first time that researchers have had some success with progressive MS, and offer hope that more effective treatments will start to follow. While the effects were quite modest and only showed benefit in a small proportion of people, these improvements were more than any other drug has managed to achieve before in altering the course of progressive MS. A similar response was seen in drugs for relapsing MS twenty years ago. The first ones to appear were seen as a great breakthrough at a time when there were no other treatments, but have since been joined by a range of more effective drugs. Both ocrelizumab and biotin are currently going through the licensing process of the European
Medicines Agency. Once licensed, they will then be appraised for cost effectiveness as NHS treatments. If these steps are successful the drugs could be available on the NHS by 2018 at the earliest. Pam Macfarlane, Chief Executive of the MS Trust, commented: “This is very encouraging news for people with progressive MS. These positive results are a cause for greater hope that there is a treatment that could have an effect on disability. We look forward to hearing more detail about the trials and whether the positive effects on disability can be sustained over the longer term.”
Read more about ocrelizumab and biotin in Research update on p8
In the last issue of Open Door we announced our plans to bridge the gap in MS services by working with local NHS trusts to bring new MS nurses to areas that need them most. Our research shows that around two thirds of people with MS in the UK live in an area where there simply aren’t enough MS nurses. We’ve had a great response to our announcement from people with MS and also from MS teams, keen to work with us to make their services even better. We’re delighted to say that the pilot phase of our programme is now well underway. We’ve selected two teams to work with, and we’re currently assisting them so they have everything in place to recruit outstanding nurses to make a difference for people living with MS. The MS Trust will help with the recruitment and then train and fund the salary of these nurses for 15 months, supporting them throughout this time so they can show just how much of a difference they have made - both for people with MS, but also helping the NHS deliver an efficient and effective service. At the end of this period, the local NHS trust will then take over funding these nurses, but we will continue to support them and help them deliver their service. We hope to announce the new nurses in MS Awareness Week, which this year takes place from 24–30 April. To stay Find out more about the up to date with the MS Trust Specialist Nurse latest developments Programme at sign up for our news mstrust.org.uk/nurses alert at mstrust.org. uk/sign-up
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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NE W S M S SP EC I A L I S T S E RVICE S
Winners of 2016 QuDos Awards revealed Annual awards celebrate work of MS health professionals The work of some of the UK’s top MS specialist nurses, neurologists, allied health professionals and multi-disciplinary teams was recognised at the 2016 QuDos Awards, held in Windsor at the end of last year. Now in its second year, the QuDos Awards celebrate the invaluable contribution of MS specialist teams in improving the quality of life for people with MS. The awards were initiated by pharmaphorum with the support of the MS Trust. Here are just a few of the worthy winners who have made a huge difference for people living with MS.
Outstanding allied health professional working in MS Pam Bostock, Adult Ability Team, VirginCare, East Staffordshire Pam believes in person-centred practice and supported selfmanagement, ensuring that people receive care tailored to their needs and that decisions are made together with people with MS. In 2005, Pam re-developed the Adult Ability Team (AAT) after identifying the need for ongoing community support for people with MS in their own homes. Her aim for the team was not only to assist people to live with their condition as independently as possible, but to lead the best quality of life possible.
Outstanding MS specialist nurse Del Thomas, Wye Valley NHS Trust Del Thomas is a caring and empathetic advocate for people with MS and works hard to ensure their needs are heard. She supports over 500 people with MS in a very rural area. She has introduced effective and innovative ways of working, including technology to provide teaching resources for patients and carers. Del is dedicated, knowledgeable, enthusiastic and highly skilled, and she ensures that a rural community is provided with excellent access to support and treatment.
Judges’ Special Awards Vocational Rehabilitation Service, National Hospital for Neurology and Neurosurgery The Vocational Rehab Service at the National Hospital includes a consultant neurologist, a clinical neuropsychologist, and two occupational therapists to provide a holistic and coordinated approach to helping people stay in work. The team liaises between employers, occupational health, and people with MS, often educating employers about invisible MS symptoms and negotiating reasonable adjustments for returning to work. The team also works alongside other local services to enhance communication and positive care coordination.
To see the full list of winners and to find out more about the QuDos awards visit mstrust.org.uk/qudos
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Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Low vitamin D levels in newborns linked to greater risk of MS in later life Babies born with low levels of vitamin D may be more likely to develop multiple sclerosis in later life, according to recentlypublished research. In Denmark, dried blood spots samples are taken during newborn screening tests and stored in a national biobank. Researchers identified everyone in Denmark who was born since April 30 1981, had onset of MS by 2012 and whose dried blood spots samples were included in the biobank. Vitamin D levels in the blood spots from these 521 people were compared to vitamin D levels in blood spots from 972 people who did not have MS. Study participants were divided into five groups based on the vitamin D levels in the blood spots. People with the lowest levels of vitamin D at birth were most likely to have developed MS in later life, while people with the highest levels at birth were least likely to have developed MS in later life. The results provide further evidence to suggest that low levels of vitamin D during pregnancy may increase the risk of the child developing MS in later life, but the researchers point out that the results do not show that taking vitamin D supplements during pregnancy will reduce that risk.
For more on vitamin D see mstrust.org.uk/a-z/ vitamin-d
NEWS
Get a 20/20 vision of the city and raise funds See the sights and make a difference for people with MS A group of London tour guides are aiming to raise £20,000 for the MS Trust in 20 hours by offering guided tours of the City of London on Thursday 25 May. Organisers hope that around 45 guides will lead tours throughout the day, starting with 6am tours of Smithfield Market. Tour guide and 20in20 organiser Ans Vaessen said, “Almost ten years on from a diagnosis of possible MS, I look back and see that diagnosis caused a change in my mentality that has brought me joy in life. But I also understand I have been one of the lucky ones and I wanted to do something for those who weren’t as fortunate. “This is how the idea of a guiding event to raise £20,000 was born. The event will consist of a walking tour beginning every hour and there will also be some exclusive walks. For me it was important to do
Tour guide and 20in20 organiser Ans Vaessen
something that everybody can take part in.” You can join one of the tours from just £20 and get unique insights into the City’s architecture, history and customs from an experienced and qualified guide. There will be opportunities to
explore the City by bicycle as well as on foot, and there will be tours tailor-made for wheelchair users or people with visual impairment.
To find out more about the 20in20 event and book places on the tours, visit mstrust.org.uk/20in20
New bursaries to improve care in severe MS Funds from the Helen Ley Charitable Trust will fund training for MS health professionals. People with severe MS will benefit from new bursaries worth £150,000 which will fund the training of specialist nurses and allied health professionals, enabling them to offer the best care possible. The finance behind this initiative comes from the Helen Ley Charitable Trust, an organisation which was formed 42 years ago by people with MS in Coventry. The Helen Ley Trust was originally set up to create a care home where people affected by multiple sclerosis could enjoy a holiday, giving their carers at home a much-needed break. Over time it
became the UK’s first respite home to specialise in the care of complex and severe cases of MS, a proud achievement which would not have been possible without the support of the community. In recent years the ownership of the Helen Ley Centre passed to Castell Froma, a local charity that offers long-term residential care and respite for people with neurological conditions as well as MS. This change in direction enabled the release of funds for the new bursaries, which will be adminstered by the MS Trust and will ensure that
more people with severe MS can access the high quality care they need. “For 42 years we have been active in respite care for people with severe and complex MS,” says Ann Crossley, chair and founder member of the Helen Ley Trust. “This care continues to a degree at Helen Ley Care Centre. But we feel that the time has now arrived to make more positive use of funds, specifically targeting severe and complex MS requirements. We welcome the opportunity to create these new bursaries and fund other training events organised by the MS Trust.”
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Research update
Keep up to date with the latest MS research by signing up for our weekly email mstrust.org.uk/keepintouch
M S D RUG S A N D P ROGRE S S IVE MS
Promising topline results from progressive MS clinical trials for ocrelizumab and high-dose biotin were reported at scientific meetings in 2015. The results of the clinical trials have recently been published in peer-reviewed journals, giving us a better idea of the effectiveness and risks of these potential treatments
Can ocrelizumab prevent an increase in disability in people with progressive MS? Authors Yadav V, et al Title Ocrelizumab versus placebo in primary progressive multiple sclerosis Journal New England Journal of Medicine 2016 Dec 21. [Epub ahead of print] >> Read the full study: tinyurl.com/ocrelizumab-ms
The study The main aim of this study was to see if ocrelizumab could prevent an increase in EDSS, in other words, maintain the current level of disability. 732 people with primary progressive MS took either ocrelizumab or placebo as an IV infusion (drip) every six months for at least two years.
The results An increase in disability which lasted 12 weeks was seen in 32.9% of those taking ocrelizumab and 39.3% of those taking placebo. In addition, increased disability which lasted at least 24 weeks was seen in 29.6% taking ocrelizumab and 35.7% taking placebo. Comparing the two groups, people taking ocrelizumab were 24% less likely to have an increase in their disability than those taking placebo. Infusion-related reactions, chest infections and oral herpes were more frequent in the ocrelizumab group. Neoplasms, an abnormal growth of tissues which can be
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benign or malignant, developed in 2.3% of those taking ocrelizumab (which included four cases of breast cancer) versus 0.8% of the placebo group.
What does it mean? The results suggest that ocrelizumab could slow down the progression of MS. The increased number of neoplasms in the ocrelizumab group will need to be monitored closely. Ocrelizumab is also being developed as a treatment for relapsing remitting MS. In the same issue of the New England Journal of Medicine, investigators reported that ocrelizumab reduced the number of relapses by 50% compared to beta interferon.
To find out more about ocrelizumab visit mstrust.org.uk/a-z/ ocrelizumab
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
R E SE ARC H U PDAT E
Can high-dose biotin reduce disability in people with progressive MS? be purchased as a nutritional supplement. The dose used in this study correspond to 10,000 times the recommended daily intake of biotin. Neurologists are warning that people should not start taking large quantities of biotin supplements which are manufactured to a lower quality than the pharmaceutical grade biotin used for this study. Both ocrelizumab and highdose biotin are currently being assessed for European drug licensing and will then be appraised for cost and For more effectiveness as NHS information, see the treatments. If these Drugs in Development steps are successful the drugs could page on our website: be available on the mstrust.org.uk/a-z/ NHS by 2018 at the drugs-development earliest.
Authors Tourbah A, et al Title MD1003 (high-dose biotin) for the treatment of progressive multiple sclerosis: a randomised, double-blind, placebo-controlled study Journal Multiple Sclerosis Journal 2016; 22: 1719-1731 >>Read the full study tinyurl.com/biotin-ms
The study The main aim of this study was to see if treatment could reduce EDSS, that is bring about an improvement in disability. This is a more ambitious target than the ocrelizumab study which aimed to maintain the current level of disability. 154 people with secondary and primary progressive multiple sclerosis took capsules containing either placebo or high-dose biotin three times a day for 12 months. After 12 months, all participants took high-dose biotin for a further 12 months.
The results 13 out of 103 people (12.6%) taking high-dose biotin had reduced disability at month 9 which lasted 12 weeks, compared to none of the 51 people taking placebo. At the end of the second 12 months, 19 of 133 people had reduced disability, which included 10 of the 13 people who had responded in the first year and others who had initially been taking placebo. The study also looked at how many people had increased disability. At the end of the first 12 months, 4.2% of those taking highdose biotin had increased EDSS, compared to 13.6% people taking placebo. At the end of the second 12 months, 9.9% of those who took biotin from the start had increased EDSS, compared to 31.7% who had started on placebo and switched to high-dose biotin. Mild to moderate side effects included urinary tract infections and
headache, which were reported for both placebo and biotin groups.
What does it mean? The results suggest that highdose biotin may cause a reversal of MS-related disability in a subset of people with progressive MS and slow down progression in others. The number of people in the study is relatively low, making it difficult to draw firm conclusions or identify those most likely to benefit. High-dose biotin (MD1003) is a highly concentrated formulation of biotin. Biotin is a vitamin which can be found in small amounts in numerous foods and can
What other drugs are in development for progressive MS? A number of drugs are being evaluated as potential treatments for progressive MS. Drugs go through several stages before they can be prescribed: • Phase I: Safety of single doses in a small number of healthy volunteers • Phase II: Small, short studies in people with MS • Phase III: Larger and longer studies is conducted in hundreds of people with MS • Licensing: Apply to the regulatory authorities for licence to market the drug • NHS Appraisal: Drug evaluated for effectiveness and cost as NHS treatment Drug
Primary progressive
Ocrelizumab
ü
High-dose biotin
ü
Siponimod Masitinib
ü
Laquinimod
ü
Ibudilast
ü
Idebenone
ü
Secondary progressive
Development stage Licensing
ü
Licensing
ü
Phase III
ü
Phase III Phase III
ü
Phase II Phase II
Amiloride
ü
Phase II
Riluzole
ü
Phase II
Fluoxetine
ü
Phase II
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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R ESE A RC H U PDAT E M S P RO G N OS I S
Do people want to know about the future course of their MS? Tools are being developed to predict more accurately how MS might affect someone in the future, but there has been little research into how people feel about being given their own personal prognosis Authors Dennison L, et al Title How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study Journal PLoS One. 2016 Jul 19;11(7):e0158982 Read the full study: tinyurl.com/ms-prognosis
The study UK researchers selected a group of 15 people who were representative of the different types of MS, time from diagnosis, age and gender. In-depth telephone interviews using a set of open-ended questions were recorded and analysed.
The results Most people recognised and accepted that MS is a variable condition and were in two minds about finding out more about the future course of their MS; they often coped with uncertainty by focusing on the here-and-now rather than worrying about the future. Often prognosis information was not considered useful as participants did not believe it would change anything for them. Reasons for wishing to know more about MS prognosis included weighing up benefits and risks of treatment choices, making financial and practical plans or preparing family members. Most people developed their own expectations about the course of their MS. At diagnosis, these could be quite pessimistic but over time were revised by their own
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experiences and as they acquired more knowledge about the course of MS. Several participants reported that they had had little opportunity to discuss their MS prognosis. Previous unsatisfactory discussions with health professionals, particularly at the time of diagnosis, left a long-lasting impression and coloured expectations about future discussions.
What does it mean? This study shows that there is wide variation in appetite for information about prognosis but the small number of people in the study meant it was not possible to link preferences to type of MS, time from diagnosis or other factors. While clinical prognostic tools continue to be developed and refined, it will be important to also consider how the information these tools provide is communicated. Given the long-lasting negative impact that poor communication can have, health professionals will need to take account of personal preferences and carefully consider whether, when and how to discuss prognosis information.
Prognosis – predicting the course of MS Multiple sclerosis is hugely variable so predicting someone’s prognosis, that is how MS might affect them in the short and long term, is very difficult. The type, duration, severity and impact of symptoms will vary from person to person. Some people go for long periods with few or no symptoms whilst others experience more frequent or persistent problems. Prognostic tools are being developed which will allow for more accurate predictions about how someone’s MS might develop. Data from a range of sources, such as placebo groups from clinical trials or MS registers, can be combined and analysed statistically to give more reliable predictions but one of the problems being faced with developing these tools are limitations of the measures of MS activity currently in use.
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
To find out more about how your MS might develop visit mstrust.org.uk/a-z/ prognosis
25 YEARS OF
MS S
PECIALIST NURSING
25 Y E ARS O F MS N URSES
Guiding lights In the last 25 years the MS specialist nurse workforce in the UK has grown from just two or three to over 200. Together these nurses have made a world of difference to the thousands of people in the UK living with MS, and we’ve trained and supported them every step of the way. To mark this milestone, we caught up with some of the first MS nurses to find out how care has changed during this time, and the challenges we still face to ensure nobody has to face MS alone It would be no exaggeration to say that for so many people living with MS, their MS specialist nurse can prove to be guiding light in some dark, and often rather frightening times. Take Tracy, who describes her MS nurse Mary as “the linchpin of my care” and someone who has “made my life with MS a lot more bearable”. Or Jules, who calls her nurse “fabulous, 100% accessible, and really caring and helpful”. “They are our frontline heroes that help with the daily battle that is MS,” Sarfraz enthuses. Julie’s nurse is “always at the end of a phone if I have concerns” and “a friendly face in clinic”. “I don’t know how I would cope without her,” says Karen of her nurse Liz. Offering invaluable support, information, guidance, or sometimes simply a shoulder to cry on, every day MS specialist nurses all over the UK help make life with MS just that little bit more bearable. 2017 marks 25 years of MS specialist nurses – and what a quarter of a century it’s been. The workforce has grown from a mere three nurses in the early 90s to well
over 200 today, and the MS Trust has played a crucial role in this progress. We have trained every MS nurse in the country, developed programmes and resources to ensure nurses have all the tools they need, and, at every opportunity, we’ve shouted from the rooftops just how important these nurses are. Bu we’re not stopping there. As reported in the last Open Door, our research shows that 64% of people living with MS in the UK – that’s around 68,000 people – live in areas where there aren’t enough MS nurses to provide the care and support they urgently need. To ensure the next 25 years prove just as successful as the last, we have launched an ambitious campaign to make things better. For the first time, we will be funding, training and supporting new MS specialist nurses in areas most in need of this crucial support. It’s an ambitious project, but a vital one. So on that note, let’s raise a glass to all the MS nurses from the past 25 years, and look forward to the many more we’ll be welcoming to the fold in the next 25.
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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25 Y EA RS O F M S N U R S E S
“Now there is so much we can do” We caught up with Gail Clayton and Vicki Matthews, two of the first MS nurses, to hear their thoughts on how MS services have changed over the last 25 years In 1995 Gail Clayton was appointed as the first MS specialist nurse in Wales. She is now lead clinical nurse specialist at the Helen Durham Centre at the University Hospital of Wales. There wasn’t any kind of MS service when I started. I covered half of Wales out of a car boot! There were no neurologists with a special interest in MS, so there weren’t any clinics, and patients were diagnosed and then just left to it. The role of an MS nurse has changed beyond recognition in this time. But they are very much becoming treatment nurses now, focusing on MS drugs. This is great for the patients who are having treatment, but a real shame for those patients who aren’t, because they can sometimes get a raw deal at the moment. I love my job. Even after 20 years it is changing all the time. There is always something new to learn, and that keeps it fresh. It’s challenging and busy, but there is such a variety of people out there that you get to meet – I wouldn’t want to do anything else! There’s lots that I’m proud of in my career. Setting up the all-Wales MS service was a huge achievement. I was also delighted to be nominated for the MS Health Professional of the Year. I got to take my daughter along, who was 12, and I went outside to do some interviews, and I remember coming back in and seeing her help someone who had MS with their dinner and then help somebody else with their foot plate, and that was a really proud moment for me.
Vicki Matthews has over 30 years of experience caring for people with MS and set up the Wessex MS Specialist Service at Southampton. MS care was reactive and poor when I first started. We didn’t have treatments for MS, what we had back in those days, were treatments for the complications of MS, and there was very much an attitude of ‘diagnose and adios’. But we have seen enormous changes. It’s gone from ‘You have MS and there’s nothing we can really do about it’ to a breathtaking pace of change in terms of treatments that will modify the course of MS. Our whole approach is different now; the hidden, more subtle and complex issues of MS, which when I first started were never discussed or understood, are now considered as equal importance to the most obvious side of MS. To someone who has just been diagnosed with MS, I would say ‘Don’t be afraid; you’re not alone’. 25 years ago, MS was an incredibly lonely place for people to be and to some extent being their nurse was also a lonely place to be. Now there is much we can do to manage it and we’ll manage it together. I’m really proud of all the people I’ve been able to support: their courage, their humour, their tenacity, their willingness to embrace new treatments and new approaches. I still see patients who I’ve known for 25 years getting on with their lives, still living in the fast lane and doing all the things they want to do, and that makes me proud.
How the MS Trust has supported MS specialist nurses 3 MS specialist nurses in the UK
1992
1993
The need for MS nurses is identified
The MS Trust (initially called the MS Research Trust) is founded by Chris Jones and Jill Holt in Letchworth
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Interfereon beta 1b, the first DMD for people with relapsing remitting MS is licensed in the UK
1995
50 MS specialist nurses in the UK
80 MS specialist nurses in the UK
1996
1997
2000
2001
The MS Trust sets up the MS Nurse Forum, a national network to share best practice
The MS Trust organises the first of its annual conferences for MS health professionals
The MS Trust runs the first of its foundation courses for MS nurses.
The MS Trust publishes the first research on the role of MS nurses and their contribution to MS care
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
2 5 YE AR S OF M S NURS ES
“We’re giving the NHS a leg up, a kickstart” Megan Roberts began her career as an MS specialist nurse at Salford Hospital in 1996. She now works for the MS Trust as MS Specialist Nurse Programme Manager, helping us fund and train new MS nurses The sheer speed of change in MS care in the past 25 years has been extraordinary. The growth of disease modifying drugs (DMDs) has been a huge thing and it’s fantastic there are so many options now. DMDs have not only made a difference to people who can take them, but they have been instrumental in the development of MS services which can help everyone with MS. The MS Trust’s nurse funding campaign wants to make sure these services are available to everyone who needs them. The Trust has been able to pinpoint the areas where existing MS nurses are working with unmanageable numbers. In an ideal world the NHS should be addressing these issues, but we know what state the NHS is in, and as much as MS is huge for us and very dear to our hearts, it’s just one more thing the NHS has to sort out. So I don’t think we’re letting the NHS off the
hook, far from it. We’re actually giving the NHS a leg up, a kickstart. We’re saying: we’ll do all the initial hard work. We’ll get people in post, and we’ll meet this unmet need for you, help you make a difference to people with MS. But then you have to pick up the purse strings and get on with it.
The MS Trust has now identified the first sites to take part in our Specialist Nurse Funding Programme (see p4). We believe that by working in partnership with the NHS, we can address the shortfall of MS nurses and secure services that work even better for everyone affected by MS. To find out how you can support this vital work visit mstrust.org.uk/nurses or text
MS Trust co-founder Chris Jones reflects on the part the Trust has has played in training and supporting MS nurses and transforming the lives of people with MS I remember thinking, back in 1992, that there were Macmillan nurses for people with cancer and there were Sapphire nurses for people with epilepsy and Admiral nurses for dementia. But where were the nurses for people with MS? When there was no treatment for MS, when neurologists routinely told people like me “You’ve got MS, go home and learn to live with it”, it seemed to me even MORE important that we should have specialist nurses. I’m immensely proud of the work the MS Trust has done over the past 25 years to develop the role of MS nurses – lobbying, supporting, educating and generally fighting their corner so that everyone with MS will have the benefit of their skills and knowledge. But with the financial pressures the NHS is under, I believe it is now right to take a further step – for the MS Trust to pump-prime and initiate new posts so that we can again grow the numbers of nurses to meet the growing needs of people with MS.
to deliver an even better service for people with MS 170 MS specialist nurses in the UK
200 MS specialist nurses in the UK
2003
2006
2009
The MS Trust steps up its campaign for the need for more MS nurses in the UK
With the Royal College of Nursing and the MS Specialist Nurse Association, we publish A Competency Framework For MS Services
With the Royal College of Physicians, we commission the first of three surveys into the state of MS services
216 MS specialist nurses in the UK
241 MS specialist nurses in the UK
2012
2014
2016
2017
We publish Defining the Value of MS Specialist Nurses, and begins the GEMSS project, helping nurses make a strong case for the value of their work
Our GEMSS programme enters its second phase, helping MS teams capture and demonstrate evidence for the value of their work
We launch our campaign to address the persistent shortfall in MS nurses by funding and training new MS nurses in the areas of greatest need
We begin recruiting the first of our new MS nurses
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MS P E RS P ECT IVES: STEM C ELL THER APY
Balancing hope and hype Last year a Panorama programme on stem cell therapy in MS brought this experimental treatment to national attention. One year on, we spoke to Professor John Snowden, whose work was featured in the programme, and Dr Eli Silber, who is part of the London MS stem cell group, about how stem cell treatment is becoming available, who might benefit and the risks to be aware of
Professor Snowden is Consultant Haematologist at Sheffield Teaching Hospitals. His work was featured in the Panorama programme on stem cell treatment in January 2016 I’ve been working in haematology and stem cell treatment for 20 years, but it’s only really in the last few years that people with MS have started to be treated in the UK. The enthusiasm has started to pick up among the neurology community. But the stem cell label is used very freely and sometimes it can have a negative impact. I want to clear up some of the confusion. There’s lots of different types of terminology around bone marrow transplants, but there’s one unifying term – haematopoietic stem cell transplantation (HSCT). So what exactly is HSCT? It’s a procedure whereby we collect bone marrow cells from the person to be treated, we administer chemotherapy or radiotherapy (or both) to wipe out the immune system, and then the harvested cells are transfused back into the person to reboot the immune system, hopefully without the autoimmune
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effects of MS. This is called an autologous transplant, which means that we use cells from the patient themselves rather than from a donor. We do this all the time for myeloma and lymphoma, and now we’re increasingly using it in MS. There are various intensities of HSCT treatment, depending on what we’re treating. In MS we do the low-risk type of transplant. Treatment-related mortality for all of autologous transplants – including myeloma and lymphoma, often people who are older and less healthy – at Sheffield is about 1%. We do 100 of these transplants a year. A very small number of them are MS patients. But we’ve had no deaths in MS. In contrast, the high-risk transplants have a treatment-related mortality of 10-30%, three years after treatment. That’s a gargantuan risk, but it’s justified if the leukemia (for example) is going to kill the patient. In that situation we make the patients aware of the risk, and they accept it. But it’s not appropriate to take that kind of risk in MS. It’s a complex process. It’s not a drug that you have to use on a licence. If HSCT
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had been a drug, it might have moved much more quickly to become more widely available. But there’s not a lot of vested interest or corporate support – it’s been academia that’s moved it on. There are still relatively few people with MS treated with HSCT, but it’s increasing. Transplant in autoimmune diseases is not new. It’s taken a long time to come through. It’s about four decades old. The first animal models were done in the 1970s and 80s. We’ve also had patients with leukemia, who happen to also have MS, and after HSCT both conditions had been made better. It wasn’t until 1995 that the first patients with MS were treated with autologous HSCT. Shortly after that the European Society for Blood and Marrow Transplantation (EBMT) set up an autoimmune diseases working party and created guidelines and a database. One of the strengths of transplantation is that every transplant in Europe and the UK is entered in the database, which now contains over 2000 patients with autoimmune diseases.
M S P E R SP EC TIV E S: STE M C E LL THERAPY There have now been around 1000 MS stem cell transplants in Europe, and probably another 1000 in the US. There’s been a gradual increase since 1995 through to 2016. Around 120 patients have received this treatment in 2015. It became clear early on that HSCT was effective on the inflammatory activity in relapsing remitting MS (RRMS). One trial looked at 21 people with MS and compared stem cell transplants versus another style of chemotherapy. They found that transplants significantly reduced lesions, and also reduced relapses. But the trial was too short to show any improvement in disability. A more recent study of people with RRMS in Chicago suggests that EDSS scores fell by an average of a point, and there was a four-year relapse-free survival of 87%. There were no mortalities. Retrospective data from Sweden, using a slightly different regimen, found progression-free survival of 80%. There’s a big question over how hard we should treat people. A small recent study tried to reduce the intensity of the chemotherapy and the results weren’t so good. There were more relapses. So we have to find the sweet spot. If you go high you might get some good results, as in the Canadian study this year which found no MS activity and reduced brain atrophy post-HSCT, but they had one treatmentrelated death and another serious complication. So for me this treatment is too hard, too tough. We also need to look at the cost effectiveness. There are some good drugs in MS but they are all expensive. In our centre HSCT costs around £30,000. It’s a one-off. That could be a game changer if we can show transplant is efficacious while being safe. But we still need strong evidence from trials. At Sheffield we’ve been involved in a trial that’s being led from Chicago, and also involves centres in Sweden and Brazil. That should report in a year. It compares HSCT vs standard MS drugs, but doesn’t include alemtuzumab, which is widely seen as the most potent current MS drug. But the trial might provide proof of principle, and demonstrate that HSCT can challenge other treatments.
Dr Eli Silber is a consultant neurologist at Kings College Hospital and a member of the London HSCT group. We set up the London MS HSCT group because we wanted to improve the way that people with MS were being selected for treatment, who selected them and how they were followed up. Through a lot of effort we’ve pulled together a group to create shared guidelines about who should be treated, making sure they’re seen within a multidisciplinary team and are supported in hospital by both the haematology and neurology departments, and are appropriately followed up. We want to make sure that if we are offering HSCT, we gather the relevant date and do appropriate follow-up for audit. These are vulnerable people and every one of them needs to be involved in the research. Within the London MS group we are all keen on offering this therapy to appropriate patients, I am quite cautious with respect to HSCT. I tend to explain to patients why they should or shouldn’t be treated. If we think someone should be treated, I will strongly support them in this. But if I think someone shouldn’t be treated I will tell them so. Lots of people are now requesting HSCT. There’s a hope that it is a regenerative medicine. People are desperate for something to regrow their nervous system. We need to tell them that’s not the case with what’s on offer at the moment. These days we hear of lots of people travelling abroad for stem cell treatment. The people doing this treatment aren’t in touch with the neurology teams in the UK. We don’t know if they are offering the treatment to appropriate people. And they aren’t arranging the follow-up that people need after the treatment. People often come back with a letter to their GP. We have to pick up the pieces and re-engage them with neurology teams and haematology teams because we have a duty of care, but it puts us in a difficult position. We need to make sure that people are aware of charlatans. I am concerned that it may be a business built on hype. Neurologists tend to be much more cautious than haematologists. Because haematologists are often treating life-or-
HSCT is death conditions like cancer, they expensive, have accepted a aggressive and risky... certain level of It’s still not a treatment mortality. But that’s suitable for the MS patients tend vast majority of our not to die, or if patients they do, it tends to be after many years, due to complications. So we tend to be much less tolerant of these risks. What are the minimum standards we should expect from a treatment that is expensive, aggressive, has a significant mortality rate and a high morbidity? • It should be able to perform consistently better than available therapies. • It should be available to a reasonable proportion of the population – not just in a small number of centres. • We need to make sure that it’s more beneficial than existing therapies. In the London group we say that people will only be treated if they have rapidly evolving relapsing remitting MS and have failed to respond to a potent therapy. Or if they have very aggressive primary progressive disease with evidence of ongoing disease activity. HSCT appears to be effective if it’s chosen well and if the patients are well looked after. But you need to choose the patients well. In London we’ve treated 30 people over about 4 years. It’s a cautious approach. It’s still not a treatment that’s suitable for the vast majority of our patients. Treatment on the NHS is considered for people meeting the eligibility criteria at Royal Hallamshire Hospital, Sheffield and the London MS-AHSCT Collaborative Group at Kings College Hospital. If you feel you may be suitable for treatment, you need to speak to your neurologist or GP about being referred. The MS Trust has provided funding for crucial stem cell research in Bristol. We’re also auditing the existing London stem cell service to understand how we can develop safe, high quality services for the future. To find out more about stem cell therapy visit mstrust.org.uk/stem-cell-guide
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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FO CU S ON
Childhood MS Being a teenager can be tough enough, but imagine throwing MS into the mix as well. An increasing number of children and young people are being diagnosed, so the MS Trust is working on a new information resource to help them and their parents make sense of their diagnosis and learn to live well with the condition. To find out more about some of the issues, Open Door went to Great Ormond Street Hospital to meet their paediatric MS specialist nurse, Katie, and two of the young people she works with
Eden, 15, first noticed symptoms of MS when she experienced double vision during a game of netball I went to catch the ball during a netball match and remember seeing double. It was a few days before I said anything but I eventually told my parents, they took me to the GP and then I was transferred to Queen’s Hospital. They didn’t know what it was at first, but I was given steroids and that got rid of the double vision. I had to stay in hospital for a week. I was diagnosed with MS in April 2016. I had an MRI scan to see if I had any lesions on the brain and that was quite scary! I didn’t know what MS was at first, so I didn’t really think anything of it, but the doctor explained it as being a bit like an electrical cable that gets damaged and so doesn’t always work properly, and that helped me understand it better. I started treatment about a month after I was diagnosed. I was on Rebif at the beginning; it was quite hard to inject myself at first, but then I got used to it.
I then changed medication about four months ago to Tysabri because my hair started to fall out. I am finding that much better – I haven’t experienced any symptoms since. I didn’t tell my friends and teachers straight away, but now I do try and explain to people what MS is. I am doing a speaking and listening exam on MS at school soon. We have to give a three-minute speech on anything we want, and then you get asked questions for six minutes in front of the class. To anyone diagnosed with MS I would say ‘Don’t panic’. It’s not the end of the world and you will get help.
Mohammed, 17, was diagnosed with MS in 2013. The budding engineer tells us about his hopes for the future In September 2013 I experienced numbness on the left side of my body, feelings of tiredness and I could only see from one eye. It was getting more and more severe so I went to my local hospital and they sent me to Great Ormond Street. It was in the December that I was told I had MS. I knew nothing about MS at that moment and as soon as I got home I looked it up, but the first thing I found was that unfortunately it didn’t have a cure. I hope one day there will be one. I started off with a treatment which I had to take at home on alternate days, but that didn’t seem to work, I was still getting seriously ill and it affected my life a
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lot. I had to make lots of adjustments at school; I had to reschedule tests because of hospital appointments and when I was supposed to be choosing my GCSEs, I was in hospital severely ill for two weeks. In 2015 we decided to change drugs to Tysabri, and I haven’t had a relapse for nearly two years now. I like coming in to the hospital because the staff are so helpful; they have been helping me through my hard times and my good times. My whole family have supported me too, and my older sister is currently at university studying neurology because of me. After college I’d like to go to university too and study engineering because that is my passion. In my spare time I love to be active, and my favourite sports and hobbies are basketball and football. When I was first diagnosed, every single night I prayed to God: please help me, and at this moment, he has clearly helped me. For that I thank him.
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
FOCUS ON CHILDHOO D MS Katie Hanson is a clinical nurse specialist for multiple sclerosis in paediatrics at Great Ormond Street Hospital How common is MS in young people? It’s not very common at all. On our caseload we have about 50 to 60 children with MS, next door at the adult hospital they have about 5,000 people on their caseload. On average we’re getting one or two new children being diagnosed every month. Have you seen an increase in the number of children being diagnosed with MS? On paper it looks like there is an increase in children being diagnosed with MS, but I think there is also an increased awareness from doctors, and from charities and organisations, and if there is more of an awareness of a condition you are going to be able to diagnose it sooner. Are the symptoms different to what we see in adults with MS? The symptoms are very similar and there isn’t much difference in how adults and children present with their MS. But when children are diagnosed earlier, they can start treatment sooner, and in the long run receive a better prognosis. What treatment is available for childhood MS? For children there is less medication available because they are not licenced, but we have numerous research trials currently ongoing to hopefully widen the range of medications available. But we do
have medications like first line injectable treatments which they can do at home and monthly infusions. What advice would you give to a parent who suspects their child might have MS? I would say go to your GP to start with. Don’t use Dr Google because you can freak yourself out. Go and seek proper advice from a neurologist and get the correct tests done. The neurologist will know best so follow their lead. What advice would you give to a child who has just been diagnosed with MS? Even though it is rare and might sound scary, you are not alone. Don’t let MS define you; it doesn’t mean you have to stop doing things you enjoy and you should make sure you still live life to the full. Make sure you listen to your doctors and nurses because they tell you something for a reason and just keep going with life and being yourself. What do you love most about your job? The number one thing is being able to interact with my patients and see them grow from children to young adults.
What’s the MS Trust doing to support young people with MS? There is a wealth of information on MS symptoms and treatments available to adults, but for under-18s who’ve been diagnosed with MS there is little support. We think it’s about time that changed, and so we’re working with paediatric services across the country to develop a brand new resource on childhood MS and help young people like Eden and Mohammed live life to the full. Our initial focus will be on resources for teenagers. We want to help young people understand MS better, to give them the tools they need to come to terms with their diagnosis, and show them that they can still
live a normal life. As well as working alongside health professionals with If you’d like to get experience in childhood MS, we involved in this project are keen to get the thoughts please visit of people with MS between mstrust.org.uk/childhood-MS the ages of 12 to 18 to ensure we’re doing everything possible to make this a If you’d like to support this resource that works for them. project text KIMS21 £5 to
70070
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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FOCU S O N N E W TEC HN OLOGY
How could new technology change MS rehab therapy? Rehabilitation for people with MS has changed a lot in recent years. And it’s likely to change even more as new technology and tools become available. Dr Lorna Paul trained as a physiotherapist, and has been involved with a number of innovative developments at the University of Glasgow. She tells us how she believes new technologies could make rehab more accessible, sociable and even fun Rehabilitation therapists work with people with MS in lots of ways: from assessing where they’re having problems, helping them set goals, through to planning, monitoring and reviewing their progress. We also try to help people understand their health better and learn to manage MS themselves. There are roles for technology right through our work. In this article I’m going to talk about technology in treatment. But the most immediate impact of technology on MS therapy might come in communication – all the tools from email, to Skype to the telephone, that can help us keep in contact with people more easily.
Virtual reality Virtual reality (VR) is something that has been talked about for a long time, and is now finally entering everyday life. When you buy a new mobile phone you can get a cheap VR set with it. VR is essentially the digital simulation of an environment that you are part of and can interact with. It’s a broad spectrum from headsets to simple
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games on computer screens. The Ninetendo Wii is the VR game most people are aware of. If you’ve used a Wii, you’ll know that you have a handheld device to control onscreen characters. Quite a few therapists have used Wii in rehab. We’ve used it for people with diabetes with a high risk of falls. There is now evidence that the Wii is safe and feasible in a rehab setting. It’s relatively low cost, you can use it at home or in the clinic. There is some evidence for the benefits of short four to five week sessions on the Wii. An Italian group scanned their patients and found improvements in the cerebellum after five weeks of training on the Wii. However, they scanned them 12 weeks later and the improvement had gone. The challenge for rehab therapists is how can we make these improvements more long lasting? The Microsoft Kinect system is something we’ve been looking at. It’s relatively cheap and easy to use at home. It’s different from the Wii in that it uses cameras, so there’s no hand-
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held controller. Crucially, because it’s a Microsoft product, our computing science guys can get into the code and develop their own software for it. One of the advantages of the Kinect is that it allows you to digitally record your exercise, so you get real-time performance feedback on how you’re doing, and it can be sent to your physio who can monitor your progress and give their feedback. It has huge potential in terms of applications. Kinect, and whatever comes next, may have more use to therapists than the Wii.
The challenge for rehab therapists is how can we make these improvements more long lasting?
FOCUS ON NE W TEC HNO LO GY Telerehab
Starfish
Telerehab simply means delivering rehab from a distance. It has big advantages – especially for people who have problems getting to therapists based in clinics or hospitals. At the University of Glasgow we developed a website called Web-Based Physio as a way of delivering exercise programmes to people who couldn’t come to our classes. The site consists of exercise videos with written descriptions and audio explanation, plus links to further info on the MS Trust website. The programme begins with a face-toface assessment. Your physio chooses from a library over 100 clips the exercises that are most appropriate for you. So when you log in at home, you just see the exercises in your programme. It’s individualised and targeted. When you complete your programme you can leave comments on how you got on. And when your physio logs in, they can see your comments, and comments from all their other patients. Depending on how you’re getting on, the physio can change your programme to add or remove exercises, taking you up a level. We found that web-based physio wasn’t for everybody. Some people used it as a stepping stone. One person did 12 weeks of sessions then joined the gym. For them it was a transition thing. For others it was an alternative to the gym. Some of the men in the group weren’t the type to go to an exercise group. I remember one man saying “This is great. I don’t have to get out of my pyjamas, I don’t have to make anyone a cup of tea, I don’t have to say hello to anyone.” But he was doing his programme twice a week! So we were reaching people we wouldn’t reach normally.
Starfish is another project we’re working on. We call it a “facilitated behavioural change programme to encourage physical activity”, but you would recognise it as a simple mobile phone app. It’s a very basic app – my kids would absolutely laugh at it. But it seems to be encouraging people with long-term conditions to be physically active. The sensors in the phone record your steps and these get fed into the app. When you walk, the fish in the app swims around and blows bubbles. As you reach your targets your fish starts to change shape, a bit like a Pokémon – you grow fins and tails as you reach your own targets. One of the great things about Starfish is that it’s social. You can set up groups so you can see which of your friends are also moving. Everyone has individual targets. You get feedback on everyone else in your group, but it’s proportional. So one person might have a target of 5,000 steps a day and another person might have a targets of 8,000 a day, but their feedback is proportional on how well they’ve met their individual target. Every time someone meets their target we increase their next week target by 5% to keep everyone progressing. You can also set a group target so people have a sense of collaboration. If everyone in the group meets their target on five out of seven days in the week, a new creature such as a seahorse, an octopus and finally a starfish, comes to swim in the tank. We have found that people are really keen to get these creatures! They didn’t like the jellyfish but they liked the diver and the lobster. One of the exciting possibilities of Starfish is creating mixed groups. We’ve thought about doing it with stroke survivors and their family members, who
are likely to have the same risk of having a stroke. Everyone can have a different target and enjoy being active together. It’s not sophisticated in any way shape or form, but the simplicity is a virtue – it makes it easier to use. It’s a great way of motivating people to be active in a social way. We did a trial of Starfish with 16 older people for 6 weeks, and we found there was a 32% increase in steps per day. But we only looked at number of steps – not the gait pattern which may be an issue in people with MS. We’d be really interested in trialling Starfish with more people with MS.
The future On the face of it, adopting new technology seems like it could offer a solution to a lot of the challenges facing rehab teams today. More and more people with MS are being referred for rehab, and in many cases they will need support for long periods. Technology offers the possibility of making expert-led rehab available, accessible and engaging to even more people. However, there are still big barriers. Technology can be expensive and can sometimes requires special skills to use. It raises issues around patient data and confidentiality. And there’s still a very limited, if growing, evidence base. But if we don’t know exactly what the future of rehab will look like, we can be sure it will definitely be a future with technology in it.
The MS Trust has a DVD of exercises specially designed for people with MS. To order your free copy of Move it For MS see our resources booklet in this mailing or visit mstrust.org.uk/exercise
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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GE T IN VOLV E D
Constructive partnerships These days more and more companies and organisations are nominating a charity of the year. It’s a great way of team building while raising vital funds. We were particularly thrilled to hear recently that Constructive Space, a London company that designs intelligent workspaces, had chosen the MS Trust as its Charity of the Year for 2017, with the aim of raising £10,000. We caught up with directors Nick Hull and Dan Jones to find out why they want to make a difference for people living with MS Why is the MS Trust so close to your hearts? Nick: We do a lot of work in the charity and not-forprofit sector. We really enjoy working with our charities, and for the last few years we have chosen a Charity of the Year. Dan: My wife Dionne has MS, so we have raised money for the MS Trust in the past, and this year I had the chance to say I’d like to make it our Charity of the Year. How has the MS Trust supported you and Dionne? Dan: It’s been 11 years now since my wife was diagnosed. I rang the MS Trust for some advice at that time and they were great, they really put our minds at ease. For the first few months, if we wanted to speak to someone, they were always there to talk to, and that went a long way with us. They are always there when you need them. We try to live as normal a life as we possibly can, but they have always been very helpful and supportive. What fundraising events have you got planned? Nick: We try to make them as fun as possible for our staff and clients. The first thing we did was Sober for October, so the entire staff went drink-free for the
month of October, and the money we saved in not drinking alcohol went into the charity fund. If people did drink they had to pay a forfeit. We raised about £2,000 doing that. We have several other things we are doing over the year: in January we did Veganuary, which meant we all went vegan for the month, and later in the year we have a charity golf day planned, and Dan and his wife Dionne will be canoeing coast to coast in Scotland in September. Would you encourage other businesses to support the MS Trust? Nick: The MS Trust is a marvellous organisation, and above all, you have really got involved with us; you have really taken us on board and bought into what we are trying to do here. And, apart from anything else, it’s been really good fun. I would definitely encourage other businesses to get involved.
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Enjoying a vegan breakfast in Veganuary
Could your company make a difference?
How the MS Trust helped me When I was first told I had MS I didn’t really take it in. As I was walking out of the hospital a nurse said: ‘When you need to talk I’m here’. When I got home, I saw my son and I just started crying. The diagnosis has made me more positive; I’m going to get things done that I want to do. You never know how you’re going to wake up, so I make sure I cram everything I want to do in now. The MS Trust have been a really good support, particularly their publications. I have run a number of marathons for the charity over the years and am doing another one in April. When I found out Constructive Space were making them its Charity of the Year, I was like “Wow! That’s going to be a lot of money and a lot of help for people living with MS”.
Nick and Dan from Constructive Space
Dionne was diagnosed with MS in 2005
Do you, or does one of your family or friends, work for a company that might be interested in fundraising for the MS Trust and supporting people like Dionne? If you get involved with our corporate partnership scheme and choose the MS Trust as your Charity of the Year, you will have a dedicated account manager to build and maintain the relationship and ensure everyone benefits from the partnership. We’ll provide fundraising packs and materials, suggest lots of fun fundraising ideas and activities, promote events via our website, attend social or networking evenings, and work with you to maximise all PR opportunities, both locally and nationally. For more information, contact Emma at the MS Trust. Email emma.holbrook@mstrust.org.uk or call 01462 476700.
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
G E T INVO LVED
On your marks... Did you know that you can sign up to any running event or triathlon in the UK or abroad and raise funds to help people with MS? Heather Alden who was diagnosed with MS last year, tells us why taking part in a half marathon is helping her deal with her diagnosis. Around my 38th birthday I decided that I wanted to get fit for forty! A week before the big Four-O I got a call from my doctor to say that an MRI scan I’d had the week before showed I probably had MS. Everyone’s MS is different so I am currently trying to get to know mine. It’s not easy. Before my diagnosis I had spoken briefly to my children (aged 9, 8 and 5) about mummy’s tingly fingers, so naturally they wanted to know whether the doctor was going to make me better. Trying to gently explain the situation to them without showing my fear was one of the hardest things I’ve ever done. We ordered some books from the MS Trust which explain the disease to children and they are proving so helpful – for them and me! Instead of dwelling on my diagnosis I quickly decided to use my rekindled enjoyment of running to support a charity that has become an integral part of my life, and to run the 2017 Bath Half Marathon with my brother Chris. I’ve been completely overwhelmed by the support I’ve received so far from friends and family.
Whether you’re a complete beginner, a seasoned runner or looking for something you can walk or wheel, we can help find the right event for you. We’ll support you all the way with fundraising tips, training advice, sponsor forms and more! Call 01462 476707 or visit mstrust.org.uk/run
Get involved! There are lots of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising
MS Awareness Week Save the date! Be Bold in Blue this MS Awareness Week (24-30 April) to raise awareness and funds. Get in touch for a pack full of ideas.
mstrust.org.uk/blue MS Circuit Challenge Join our fun family day out at the Goodwood Motor Circuit on 21 May. Cycle 50 miles around the track or join our fully accessible ‘by any means’ challenge.
mstrust.org.uk/goodwood Superhero Tri Enter a team in this brand new and fully accessible triathlon event on 19 August. Team up with friends or family to swim, bike or walk/run/wheel a distance that suits you.
mstrust.org.uk/superhero Survival Skills Weekend Leave the modern world behind and learn to build shelters, light fires and forage for food in Ashclyst Forest, East Devon from 23-25 June.
mstrust.org.uk/survival British 10k London Run Join our team on 9 July, you don’t need to have any previous running experience and we offer discounts for groups of 6 or more
mstrust.org.uk/british10k
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising
Open Door February2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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15
minutes with
MS Trust supporter
Trudi
Trudi Lampart-Macdonald from Kent took part in our Jump in June skydiving month last year and raised around £1,000 to help fund the MS Trust’s work. Here she tells us why it meant so much to her to be able to take on this challenge. When were you diagnosed with MS? I was diagnosed with relapsing remitting MS in June 2015. I knew something very serious was wrong because of the severity of my symptoms. The news came as a terrible shock; I could almost hear the foundations of my world cracking and crumbling. At the time, I had very little knowledge on the disease and thought the absolute worst. I am a single mum working full time; my daughter had just turned 5 at the time of my diagnosis. I don’t have any family in the UK, but I had my best friend with me in the room when I heard the life-changing words. For me it was all doom and gloom. Saying the words “I have MS” out loud seemed alien and unreal. How did you deal with your diagnosis? That night I went straight on the internet researching what this meant. Could the neurologist have been wrong? What is the worst and best-case scenario? Can I take any control of it? The lure of denial was strong, enticing even; it was a way to escape my new reality. I fought it and found acceptance surprisingly quickly. I spoke to my late father quite a lot that night (in my mind); I get my strength from him. “We” decided to go to war and win that night. The next step was figuring out who to talk to about this; that’s where the MS Trust came into my life. I called the MS Trust the day after my diagnosis and told the person on the line that I felt like a fish out of water. She was so helpful, kind, and patient; I didn’t feel rushed. She put me in touch with my MS nurse. Why did you want to support the MS Trust’s work? I need the MS Trust to be able to continue
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doing what they have done for me and so many others. They need to be able to keep up with research, train nurses, send out as much information as they do, and have trained support staff to be on the other end of the line for people like me. How have you adapted to life with MS? My life has changed immensely, mostly dietary and exercise changes. I now eat very little saturated fat, no dairy, lots of fruit and vegetables, no processed foods, very little sugar and I get plenty of exercise. I feel healthier than I did before my diagnosis. Outside of my prescribed medication, I look at my food as my medicine. I also take a host of vitamin supplements which I didn’t do before. I started modern dancing again which I hadn’t done in almost 20 years. I started in September and will be in a show next March, which is a huge accomplishment. I guess I am trying to prove to myself that I haven’t lost something with this diagnosis. At least not yet. What I lost, I got most of back and now I am seeing what else I can do. My memory is terrible, and stress is more difficult to handle but I am finding ways to cope with that. For example, I write things down as soon as they come to mind. What was it like taking part in a tandem skydive? Were you nervous? I was more excited than nervous. I was a bit nervous as I didn’t know how my body would react to the jump, but I read about other MSers that have jumped and their working limbs still worked after their jumps. I took great comfort in that. I always wanted to fly and I knew that my father’s spirit was with me the whole time. The best part was the thrill of freefalling
Open Door February 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust
above the clouds cloaked by gorgeous blue sky. What was your experience of fundraising like? I was taken aback by the amount of support I had. People were genuinely interested in the cause and so supportive and generous; I was deeply moved. What would you say to someone else with MS who was thinking about taking on a challenge like this? This is your chance to challenge yourself in a big way and push your limits outside of the MS confines. Don’t limit yourself because you think you can’t or you shouldn’t. If the neurologist gives the approval, then nothing is stopping you. Live life to the fullest and accept any challenge that makes you look twice. Take the step. Seize the moment and support MS Trust whilst you are at it
Read more about Trudi’s experience and watch a video at mstrust.org.uk/trudi-skydive If you’d like to experience the thrill of skydiving for yourself, visit mstrust.org.uk/jump to book a jump near you.
Fancy yourself as a fundraising superstar? Then join the ms trust and some sporting celebrities At the
CLUDE MS CELEBS IN PIAN PARALYM
COX! KADEENA
19 august 2017, Dorney lane, windsor CAPE NO T INCLUDE D! three uniquely designed triathlons (swim, bike and push/run) that let you do as little or as much as you like.
Team up with disabled and non-disabled family and friends to take on one stage each!
It’s big. It’s bold. It’s gutsy. It’s the UK’s one and only disability sports triathlon for the everyday Superhero!
FIND OUT MORE ABOUT THIS BRAND NEW EVENT AT MSTRUST.ORG.UK/SUPERHERO
Reg Charity No: 1088353
Finding accurate, accessible information about MS can be hard. There’s so much out there, and so much of it seems contradictory, hard to understand or just scary. Fortunately the MS Trust enquiry service is here to help. Our team can help you ďŹ nd the answers you need, whether you want to know more about MS symptoms, drugs, research or ways to live well with MS.
For MS info you know you can trust call freephone 0800 032 38 39 email infoteam@mstrust.org.uk or visit mstrust.org.uk