Inside this issue...
May 2012
Welcome to the Spring edition of Open Door
Epidemiology and 6 the natural history of MS
It isn’t very often that the MS Trust gets the chance to broadcast to the nation, so we were really excited to be selected for the Radio 4 appeal slot on Sunday 20 May. The appeal is less than five minutes long but it is a unique opportunity for us to reach out to a new audience and make them aware of the challenges of living with MS and of our services, as well as asking for donations of course! The appeal will focus on our enquiry service and as you can read on page 14 it really does make a difference for people diagnosed with MS to have someone to talk to and answer their questions.
Capturing the moment 8
The enquiry service is just one of the ways we support people with MS to get the information they and their families and friends need. Without the generosity of the general public we could not sustain it, so we hope for a good response to the appeal. All of our information is available free of charge and the enquiry service can be contacted on our freephone number 0800 032 3839. You are receiving this issue as a busy MS Awareness Week comes to an end. By way of a reminder that no opportunity should be missed to explain the complexities of MS, I can highly recommend Ishbel MacKinnon’s article on page 10. Ishbel has come up with some really innovative ways of demonstrating what it is like to live with MS to her school pupils and their reactions are very insightful.
Raising awareness of MS
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Very best wishes and thank you for supporting our work.
Pam Macfarlane Chief Executive
Also inside: Supporting specialist MS services
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Living with fatigue
News
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A revised and redesigned version of the MS Trust's most popular book is now available.
Research update
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See the back page for more information
www.mstrust.org.uk
Freephone: 0800 032 3839
Smoothing out the ride
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How we made a difference in 2011
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Info service
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Supporting specialist MS services
Amy Bowen, Director of Service Development, MS Trust As the new Director of Service Development for the MS Trust, I am delighted to be part of an organisation that is so dedicated to supporting people with MS. We are a small, but beautifully formed team and everyone at the Trust is here to make a difference to the lives of people with MS by providing the very highest quality evidence-based information that is useful and practical, by listening to and supporting people with MS and their friends and family and by developing books, resources and an easy-to-use website to help people with MS make positive choices about managing their life, work and health.
work that ensures nurses have a manageable size caseload that allows them to properly meet the needs of people with MS. The MS Trust has begun work to help define the caseload for an MS nurse. The first phase has been undertaken by Dr Alison Leary, a nurse herself, who is expert on the role of the specialist nurse.
As well as supporting people with MS, the MS Trust also has a real passion for ensuring there are specialist services and trained healthcare professionals to provide them. We provide a range of education programmes for health and social care professionals and we also work to help specialist services demonstrate the difference they make to the lives of people with MS and to the smooth running of the health service. It is a challenging financial time in the NHS and things are changing fast. MS specialist nurses and therapists need to keep making the case for the value of their services and the MS Trust is supporting a number of projects that aim to secure MS specialist services for the future.
Finally, over the next year we will be working closely with some MS nurse teams to help them pull together evidence of the impact of their service and build the skills needed to show that value to managers and commissioners.
The MS Trust has recently produced a report Defining the value of MS specialist nurses. This report assesses the case for the value of MS specialist nursing and identifies more work needed to strengthen the case further. We know that people with MS greatly value and rely on their MS specialist nurses. We want to continue to gather the evidence that will help make that case to those commissioning and designing services in the future.
We have also done a survey of the MS specialist nurses and used their responses to map out services and the location of the nurses. This is a valuable tool to help make sure services are equally available and to campaign for more services where needed.
We hope that everything that we do at the MS Trust will improve the lives of people with MS. These projects I describe are all part of our Nurse Support Programme. We believe this work is vital and that our support for MS nurses and therapists, as well as our education programme, makes a key contribution to ensuring that people with MS get the support they need. For more on the Nurse Support Programme, visit www.mstrust.org.uk/nurses
The report makes some recommendations about ways to demonstrate the value of MS specialist nursing. One of these is to define how many people with MS a specialist nurse can support. Caseload is a complex issue and depends on the needs of individual people with MS, the number of nurses, the geography of the area (rural or urban) and the other services that are available. It is vital to support
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News
Fingolimod - yes in England and Wales, no in Scotland NICE (National Institute of Health and Clinical Excellence) has approved the prescribing of fingolimod (Gilenya) on the NHS in England and Wales. Fingolimod is a disease modifying drug that is taken by mouth as a capsule and is approved for people with highly active relapsing remitting MS who continue to have relapses despite treatment with one of the beta interferon drugs (Avonex, Betaferon, Extavia or Rebif). The MS Trust has been an active contributor to the review process and welcomes this decision by NICE. Fingolimod is an important addition to the range of disease modifying therapies for relapsing remitting MS. It is crucial now that neurologists are able to prescribe fingolimod without local restriction or rationing. The approval by NICE in March came days after the SMC (Scottish Medicines Consortium), which serves a similar function to NICE, announced that they do not recommend the drug for use within Scotland, stating that there was insufficient evidence of cost effectiveness. The manufacturer (Novartis) plans to submit further evidence.
Fingolimod safety review In January, the EMA (European Medicines Agency) began a review of fingolimod following the death of someone within 24 hours of receiving their first dose of the drug. The review is also considering ten other cases of people who have died whilst taking fingolimod. Although fingolimod is known to cause temporary changes in heart rate and blood pressure in some people, it is not yet clear if any of these deaths are associated with the drug. In the interim, new guidance has been issued on monitoring people during the first dose of fingolimod. The EMA review was expected to be finalised by April 2012. See the MS Trust website for more information - www.mstrust.org.uk/fingolimod
NICE review MS guideline In April, the MS Trust was present at a meeting to decide on the scope of the revised NICE clinical guideline Management of multiple sclerosis in primary and secondary care. The guideline reviews published evidence to describe a reasonable level of care that people with MS across England should expect. Since the guideline was originally issued in 2003, there have been a number of developments, including revised criteria for diagnosing MS, fatigue management and cognitive training programmes and functional electrical stimulation. The guideline does not cover disease modifying drugs but new treatments for symptoms, such as spasticity, memory and walking, may be considered. The revised guideline is expected to be published in 2014.
Information needs research The research project on the information needs and preferences of people newly diagnosed with MS, mentioned in the previous issue of Open Door, has got off to a great start. 190 people volunteered to give their views and the researchers are talking to people with all types of MS as well as some family members. It is clear that people who are newly diagnosed have very diverse information needs. Some want to know as much as possible, while others are more cautious about what they might learn while they are still coming to terms with their diagnosis. Most people want both medical information and information to help them live their lives as fully as possible. The tone is important too, and several people have told us they don't only want to hear doom and gloom and they really value information on what they can do to help themselves. When the research is complete, there will be more news in Open Door and the report will be widely available.
MS Trust publications â– Fingolimod (Gilenya) factsheet â– Functional electrical stimulation (FES) factsheet Order from the back page or visit www.mstrust.org.uk/pubs
Freephone: 0800 032 3839
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Research update
Planning takes longer with MS
Who do you think you are?
This study looked at planning, problem solving and performance using the Tower of London test. This test has a board with three posts stacked with a small number of beads of different colours. The person being tested has to rearrange the beads, moving only one at a time, to get a target result set by the researcher. Successfully completing the test requires someone to plan all the moves before carrying out what they have planned.
Someone's idea of themself as a person relies on a number of things which they think are important, such as their job, being a parent or being good at something. When life changes in a big way, it can affect someone's sense of who they are.
In this study, three groups (people with relapsing remitting MS, people with secondary progressive MS and healthy controls) were tested. The researchers measured how long the person took in planning all their moves and whether they successfully completed the test. They found that people with either type of MS took much longer to plan their moves than the healthy controls. They also showed a greater variation in how long they took to plan as the task was made harder. However, there was no difference between the three groups in how well they completed the task (whether they had all the coloured beads on the correct posts). Denney DR, et al. Deficits in planning time but not performance in patients with multiple sclerosis. Archives of Clinical Neuropsychology 2012;27(2):148-158.
In this study of 12 people, the researchers found that having MS often altered the way someone saw themselves. However, this was not usually thought of as a loss but as a change to their identity. Those who felt the strongest sense of loss were those whose symptoms had the most effect on their ability to fulfil the roles that they thought were important. For example, if someone was very physically fit before they had MS, then their identity was more likely to be affected by physical symptoms. This was then more likely to lead to anxiety or depression. People with MS may be able to maintain their sense of self by reconnecting with the activities and roles that matter most to them, although this might be in a different way from before MS. Mozo-Dutton L, et al. MS and me: exploring the impact of multiple sclerosis on perceptions of self. Disability and Rehabilitation 2011 Dec 13. [Epub ahead of print]
Problems with memory, concentration and planning are common in MS. This research is relevant to tasks in everyday life, like making a meal which might involve planning all the stages before starting to cook. The conclusions are important as they suggest that, given enough time, people with MS can complete a task very well. What can be difficult is being rushed to finish something. StayingSmart is a web site that has tips for coping with day to day memory, concentration, planning and other cognitive problems www.stayingsmart.org.uk
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Adjusting to life with MS can be a challenge as it may be difficult to continue with some activities. This can be frustrating but some people find talents and interests that they had never explored before. On page 8, Jennifer Willis describes how she developed an interest in photography, something she can do even when MS keeps her on the sofa. More suggestions can be found in the Staying Active section of the MS Trust website www.mstrust.org.uk/stayactive
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Sight problems in benign MS
Barts and London Research Day
About 15% of people with MS have very occasional relapses which are usually relatively mild with good recovery. In between are long periods with very few symptoms. This is sometimes called benign MS and can only be confirmed in hindsight.
The Barts and The London Neuroimmunology Group held their third MS Research Day in January.
picture: Rashmi Gupta
Benign MS is defined in this study as an EDSS score of 3 or less after 15 years or more since symptoms first started. EDSS (Expanded Disability Status Scale) is a commonly used measure of disability, with 3 indicating that someone can walk without help but has moderate disability in other aspects of their MS, such as vision, sensation or continence. The research looked at how nerves at the back of the eye (the retinal nerve fibre layer) might be affected in benign MS and how this related to sight problems. 13 out of 68 people (19%) already taking part in a long-term study of visual problems had benign MS. They had the same amount of thinning to the retinal nerve fibre layer as people with other types of MS. Both groups had significant difficulties in sight tests where they had to distinguish objects from backgrounds of a similar colour in low light conditions. People with benign MS were more likely (69%) to have had optic neuritis than people with other types of MS (33%). The researchers concluded that sight problems accounted for a large part of the disability of people with benign MS. However, their overall neurological symptoms were mild, giving a low EDSS score that might not fully reflect the impact of MS on their quality of life. Galetta KM, et al. Visual pathway axonal loss in benign multiple sclerosis: a longitudinal study. Journal of Neuro-ophthalmology 2012 Jan 20. [Epub ahead of print]
Benign MS is a rather misleading name. This study shows that problems with eyesight are quite common in people with benign MS who can be seriously affected. However this is not always obvious to others, making this type of MS sometimes difficult to explain.
The Group is actively involved in MS research, from basic laboratory investigations through to clinical studies of new drugs. This event was an opportunity for people with MS, their family and friends to hear about the latest studies, talk to individual scientists and neurologists and feedback their own observations, frustrations and priorities for future research. A ten minute alarm bell helped to keep talks short and to the point. Topics included: ■ an update on new treatments being tested for relapsing remitting MS, including fingolimod, teriflunomide, BG-12 and alemtuzumab ■ trials of treatments for progressive MS and difficulties of measuring the effectiveness of new treatments ■ how MS affects white matter (myelinated nerve axons) and grey matter (nerve cell bodies). After demyelination there is damage to nerve axons and nerve cell bodies. Measuring brain volume incorporates all these changes and provides a better measure of progression in MS ■ an overview of neuroinflammation in MS and the role of defence and repair mechanisms in the immune system ■ how fampridine blocks potassium channels in nerve cell membranes to improve walking difficulties in some people with MS ■ difficulties of predicting who will get MS and an update on a study comparing people with MS and their siblings who don’t have MS ■ drugs which prevent the breakdown of naturally occurring cannabinoids as potential treatments for spasticity ■ launch of the Charcot Project, a new research programme looking at the role of the Epstein Barr virus (which causes glandular fever) and plans to test an antiviral drug to treat MS ■ latest research on vitamin D, focussing on studies which found that genetic mutations that reduce vitamin D levels are more common in the MS population. Watch videos from the day at www.tinyurl.com/research-day-videos Follow the Group's Multiple Sclerosis Research blog at www.multiple-sclerosis-research.blogspot.com
Keep up to date with research news Sign up for our weekly research email update at www.mstrust.org.uk/research-updates Read more about these topics in the A to Z of MS - www.mstrust.org.uk/atoz
Freephone: 0800 032 3839
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Epidemiology and the natural history of MS
Professor Helen Tremlett, University of British Columbia
What is epidemiology? Epidemiology is essentially the study of disease in people. Epidemiology can answer seemingly straightforward questions, such as 'are men and women at a similar risk of developing MS?' The answer appears to be 'no'; women appear to be at a greater risk, with around 75% of people with MS being female. More complex questions might include 'what is the prognosis in MS?' or 'how will MS progress over time?' We need information from long-term natural history studies to answer these questions.
What do natural history studies tell us? Natural history studies can tell us how MS progresses 'naturally' or 'normally' over a period of time, independent of any drugs that might modify the disease. These studies are designed to examine the natural course of the disease over many years and often try and identify characteristics that might be associated with the clinical course. Interestingly, despite the relatively high prevalence of MS, and the need for these studies, there are surprisingly few large, long-term studies investigating the natural course of MS.
Key findings (and myth busters) from the natural history studies in British Columbia The study design The study included 2837 people with MS followed for an average 20.1 years from across British Columbia on the west coast of Canada. We typically looked at the time it took for people to reach a score of 6 on the Expanded Disability Status Scale (EDSS), which ranges from 0 to 10 with a higher score indicating a higher level of disability. A score of 6 essentially means that a person requires a stick to walk 100m. There are many other factors which can be important in MS but are not well captured by EDSS. These might include quality of life, employment issues, fatigue, bladder problems, memory and so on. Traditionally, MS natural history studies report disease progression from the first recognized symptoms of MS onwards. However, we also investigated the age at which people reached a certain disability milestone. This provided us with some interesting findings and allowed us to challenge the following myths:
How do these studies apply to me? MS is a very variable disease and it is often said that no two people are the same. So it is always important to remember that the findings from most natural history studies are based on averages from large MS populations. Findings are often reported as the median time to a disability milestone, such as using a stick or wheelchair. The median time, by definition, is the estimated time taken for 50% of the MS population to reach that milestone. While useful, it is currently not possible to accurately predict an individual's course or prognosis.
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short-term risk rather than having substantial longterm consequences. However we did find that relapses occurring in the first five years from disease onset or in people under 25 seemed to have more of an impact than those occurring ten or more years after onset or in people over 35 years at MS onset. We also looked separately at secondary progressive MS and found that relapses occurring during the progressive phase had little impact on future disease progression. Prof Tremlett speaking at the MS Trust's conference in 2011
Myth buster #1: Men do worse than women A commonly held perception in MS has been that men fair worse than women, at least in terms of their disease progression. Our study showed that this is not necessarily true. We found that on average men and women with MS required a stick to walk at around the same age: 59 years old for men and 60 for women.
Myth buster #2: An older age at onset is worse than a younger age Another commonly held belief was that the outcome for those older at MS onset was gloomy. We challenged this and found that it was not always true. We found that those who were older at onset of MS were on average still older when they required a stick to walk compared to their younger counterparts. When you combine this with the fact that these people have enjoyed a longer disease free period, then it seems that an older age at MS onset is not so bad after all.
Myth buster #3: Relapses drive the long-term disability progression It has often been thought (or assumed) that relapses drive the long-term irreversible disability progression. So much so that many of the disease modifying drugs for MS primarily work by reducing relapses rates with the belief that this will automatically result in a beneficial effect on longterm disability outcomes. However, a number of different studies are showing that relapses might not be the main factor influencing long-term progression in MS. In our study, we were able to look at over 11,700 relapses that occurred in 2,477 people with relapsing-onset MS (ie relapsing remitting or secondary progressive MS) over a mean follow-up of 20.6 years from onset of MS. It was quite challenging to analyze so much information spanning such a long period of time. However, by teaming up with some talented statisticians, we found that relapses tended to pose a transitory
In summary, we found that relapses occurring later were likely to have a lesser impact than a relapse occurring earlier in the disease course. Age was also relevant, such that younger people might have a longer window during which relapses exhibit an elevated impact on disease progression. Our study was also novel because unlike other studies, we were able to look at the impact of relapses whenever they occurred. Other studies have typically only considered the very first few relapses a person ever experiences - right around the time of MS onset. It is important to note that our study did not look at the impact or effect of the current disease modifying drugs. Consequently, our findings cannot be used to evaluate whether these drugs will have the much hoped for positive impact on long-term disease progression. That is a separate important question and a separate study altogether. However, our study does add to the body of literature which calls for drugs to be developed which move beyond just targeting inflammation and relapses in MS and focus more on factors thought to be associated with longterm disease progression, such as axonal degeneration. All that said, it should also not be forgotten that the impact of a relapse can be devastating to the individual and that the unpredictable nature of relapses can cause much anxiety and anger.
Unexpected finding: disease progression appeared to be slower than in previous studies We found that after 15 years from onset of MS, 21% of people had reached an EDSS of 6 or more, this increased to 69% after 40 years from onset. Also, 40 years after onset 22% were full-time wheelchair users. These findings appeared to indicate that disease progression was slower than in some previous natural history studies, but similar to other contemporary studies from places such as Olmsted County, USA and Lyon, France. While these findings may give some comfort in that rapid disability progression is not inevitable, MS still remains a very variable disease. Some people will fair a lot better and some people will fair a lot worse. Why this is the case is unclear; research is ongoing by our group to try and uncover what drives these differences.
Freephone: 0800 032 3839
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Capturing the moment
Jennifer Willis I never did like to give up, was always competitive, a perfectionist, a bit of a control freak, independent, hockey player, golfer, skier, mother of three young boys and a husband who worked away from home. None of these characteristics sits comfortably with a diagnosis of MS. Then again, what does? I guess I cried on the sofa for about two weeks after diagnosis, grappling with how my future had suddenly become so uncertain. I know that there is no certainty in anyone's future - you can be knocked down by the proverbial bus at any time, but I found myself standing directly in the path of that bus. When I was a child, my grandmother used to bring me to visit her neighbour who had MS. Jimmy's MS was very advanced and he was totally dependent on others for all his basic needs. As an adult, I knew two people with secondary progressive MS and I had watched how they became slower and more dependent on others. So my experience was a fairly negative one. How was MS going to affect me? Would I end up in a wheel chair? I was told I had relapsing remitting MS and that it is not possible to give a prognosis because symptoms and progression are different for each person. This was one of the most frustrating things. You also realise how many people have little or no understanding of MS. Frustratingly, over time it became clear that my system was not prepared to accept any of the disease modifying therapies, which made coming to terms with my lot even more difficult.
Acceptance Eventually my attitude became one of acceptance. It was not possible to know what MS had in store for me so there was no point in trying to second guess or worry about what may or may not happen in the future. I felt fortunate that my MS only began at the age of forty when I had had my family and had been able to indulge in the activities I enjoyed without restriction up to that point. Also, nasty though it is, MS was not a condition that would kill me but rather was something that would potentially make life very difficult for me and my family from picture: XhyraGraf time to time.
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For a couple of years I did my best to continue my favourite activities, after all there was no point in putting off today what I may not be able to do tomorrow. I coached junior hockey instead of playing, I played golf with the help of a buggy and I joined the rest of the family on ski holidays. However, very soon, mainly due to dreadful periods of fatigue and days on end lying on the sofa like a zombie feeling like I had nothing useful to offer, I realised that change was required. I could no longer reliably commit to the coaching, I could not finish a round of golf even with the help of the buggy and skiing became instead a struggle to make it up the mountain for a hot chocolate. These may seem very trivial inconveniences to some, however, they were significant to me - I apparently had everything I could ever ask for in life yet I could not do the things I wanted to do. Which brings me back to where I started. I do not like to give up and I do not like to do things by halves. So my solution was to set things aside. I made the decision to set golf aside, to stop trying to ski and to change my commitment to the hockey coaching. At the same time I decided to find another activity - something productive and satisfying that would adapt to the varying problems of my MS. Psychologically this was very different picture: Noyes from giving up. I was in control.
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Photography So, at my husband's suggestion, in stepped photography. It was an organic process, starting with photographing the boys skiing and playing hockey, my teammates playing golf matches and my two little miniature schnauzers. With time on my hands I was able to indulge and experiment, persuading friends to let me photograph their pets. Technically, I knew little of photography, however it seemed that I had a great eye and that was more important. Soon people were asking me to photograph their pets and, after being in the right place at the right time, I found myself in demand as official photographer for all the cat shows in Northern Ireland. I registered as self-employed and set up a website, however, money was never the issue (I have never been brave enough to charge enough to make money!). This was an outlet for my creativity, an opportunity to retain some purpose and sanity. The commissions increased and at the start of this year I was invited to become the official photographer for War on Want Northern Ireland which I carry out on a voluntary basis. As fast as this hobby had developed into a business, I never for one moment expected what happened last year. For a full week in November, over fifty of my images were displayed in a solo exhibition in one of Belfast's leading galleries. My story and details of the exhibition were carried in the main local newspapers and a surreal weekend was made complete by being guest on a BBC Radio Ulster Sunday morning show.
Photography has met my needs on many levels intellectually, creatively, socially. I love looking through the lens and visualising the image I know I can produce from that brief moment in time. I love the challenge of capturing that perfect shot in moments of chaos and commotion, of shooting the familiar in unfamiliar ways and of showing the beauty and potential in 'the ordinary'. Short walks are made longer by looking for an interesting shot. Even when I'm not feeling too energetic and am stuck to the sofa I will photograph the moon at night or a bird or a squirrel on a tree in the garden. When I am feeling well it gives me greater motivation to get up and go and seek out some great photo opportunities. It has given me interest in things that I would never have been interested in before and brought me into contact with people I would otherwise not have met. Apart from my husband, family and friends, photography has probably been the biggest help in coping with what MS can throw at us. MS has changed me and it has turned our family life upside down. I don't like the fact that I have MS, the uncertainty it brings and the very difficult times it inflicts. Yet I cannot ignore the opportunities that have arisen because of it. It has driven me down a different path in life and rather than fighting it, I have run with it. There really is no point in wishing for what might have been or to change something that cannot be changed. There is, however, immense value in making the best of what actually is.
Visit Jennifer's website at www.jenniferwillis.co.uk Read more about photography in the Staying Active web pages www.mstrust.org.uk/photography
Freephone: 0800 032 3839
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Raising awareness of MS
Ishbel MacKinnon I live in Tobermory, a town of fewer than 1000 inhabitants on the beautiful Isle of Mull off the west coast of Scotland. I intended to stay for four or five years - 32 years later, I am still here. My husband, Iain, is a native of the island and, although retired, is kept very busy with his croft (smallholding), his garden, and fishing from his boat - and doing lots to support me as I continue to work, including having my meals ready for me every day. I have been a teacher, both in East Kilbride and now in Tobermory High School, for 37 years, with breaks to have my two daughters, Rhoda and Kirsty. Initially I taught French and German, then later trained to provide learning support. This proved to be a particularly good change of direction once my MS began to affect my mobility. My first symptoms (though undiagnosed at the time) were in 1985 when Rhoda was about 15 months old. I managed to cope with relapsing remitting MS for many years through courses of steroids. Then, about nine years ago, the steroids didn’t work any longer and my mobility became affected - very gradually at first, then to the stage where I started using a stick. Now I use a rollator to maintain my balance and to have the confidence to move around. MS was eventually officially diagnosed about six years ago.
I still teach four days a week, taking a Friday off to give me a nice long weekend. Being a learning support teacher means that I now work mostly with individual pupils and I can work sitting next to them, so I no longer have to stand in front of a class. My employer and colleagues have been most helpful in implementing changes which have helped me at work, such as installing ramps and railings and confining my work to the ground floor. However, our school is made up of lots of different buildings which have been added on over the years and still has some seemingly insurmountable access issues.
MS awareness at school I realised some time ago that many of our 170 pupils probably didn’t know why I walked around the school using a rollator or why they sometimes see me on a mobility scooter or in a wheelchair and yet they also see me driving round town in my own car. So when I was asked to do a workshop at our annual Equal Futures Day, I felt it was an opportunity to raise awareness about MS and its implications for everyday life, both in and out of school. Equal Futures Day gives pupils the chance to learn about a very wide range of topics: asylum seekers, HIV awareness, education around the world, British sign language, Islamic stereotyping, the work of relief agencies, Travellers' Tales, raising awareness of Alzheimer’s and lots more. So why not MS? The next thought was what I should do for the pupils to allow them to learn something about MS in a way which would catch their attention. Pupils choose three workshops to take part in over the day, so I had to try to ensure they felt their choice had been worthwhile. I decided to first of all give them some basic information, covering aspects such as types of MS, possible causes and symptoms. From a more practical point of view, we looked at what it actually means for me in my everyday life affecting my mobility, memory and concentration and causing fatigue, particularly by the time I
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The pupils involved themselves wholeheartedly in the activities, asked very relevant questions and made lots of insightful comments, a selection of which you can read below. I am sure that they now have a better understanding of why I move so slowly round the school and have some idea of what personal and working life can be like for any disabled person. I would say that there is more understanding in our small school community now and that pupils are even more helpful than they were before.
Pupil comments reach the end of each Thursday at school! I should say that I also tried to stress what I can still do including still going to work and enjoying my job. I showed them a range of the aids I use regularly, from Toe-offs to help lift my feet off the ground to my super Motability car which means I can drive myself to school and also travel independently to the mainland. Thanks to my local MS Therapy Centre I was able to show pictures of the hyperbaric oxygen chamber I use regularly for my 'dive' and explain what happens there. I was very grateful for a wide range of books on all aspects of MS sent to me by the MS Trust and I also received posters to put up around the room from the MS Society. We also tried to simulate for pupils what it is like for me to function in everyday life. They split into pairs and tried a variety of activities: ■ Fixing heavy weights from the Physical Education department round their ankles and trying to run up and down the stairs ■ Wearing scratched glasses (goggles kindly provided by the Science department) to simulate eyesight difficulties and trying to write a message and to read a book
■ Wearing the weight pads was really tiring. They made it really difficult to walk properly. ■ When you go upstairs with the weights on you feel like you are going to fall. ■ It was really difficult to do simple things like turn pages when I had the gloves on. ■ I found it quite hard to walk straight. ■ Shopping - impossible! ■ I found it hard to see and walk and pick up stuff. ■ In the wheelchair you can get stuck in places and a lot of the school is inaccessible. The corridors and doors are far too small. It was really hard to steer the wheelchair and to control it going down slopes. ■ The wheelchair was fun but I wouldn’t like to be in one all the time. ■ We had to find somewhere Mrs. Mackinnon could not go because she has MS which affects her legs. She cannot go to the staffroom because either way there are stairs and she can't go to the meeting rooms so the teachers go to her room.
■ Putting on very thick gloves and trying to pick up a paper clip or a staple or trying to write ■ Spinning their partner 20 times at speed and then getting them to walk, in order to experience balance problems ■ Walking using my rollator and at the same time trying to carry a supermarket basket and take things off the shelf ■ Fixing thick bubble wrap round their legs to try to give some idea of the altered sensation they might have with MS ■ Taking a wheelchair round the school independently or with help. Our school has very narrow corridors and a few nasty slopes and the pupils worked out that certain parts of the school are totally inaccessible to a person trying to move independently in a wheelchair, including the staffroom.
If you are interested in fundraising within a school, please contact our fundraising team on 01462 476707 or email fundraising@mstrust.org.uk for your free schools fundraising guide.
Freephone: 0800 032 3839
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Smoothing out the ride
Lindsey Barley To say that the 'Newly Diagnosed MS' evenings saved my sanity is a gross understatement. From the moment that I was whisked into hospital with a suspected stroke I felt myself drowning in a whirlpool of information. Some of it was terrifying, some confusing and some plain disturbing. Out of this turmoil I was rescued through the calm, reasoned and informative sessions provided by the excellent MS nurses at the Western General in Edinburgh. My name is Lindsey Barley. I am a 50-year-old wife and mother of three, who works as a primary school teacher. Way back in the mists of time, in 1993, I woke up one morning with no sensation in the lower half of my body. There was no pain and everything else was normal. Three weeks later, friends insisted I visit the doctor as they were fed up with me checking to see if my clothing was still in place. Within 24 hours of seeing my GP I was lying in an MRI scanning tube - I knew this was serious. Next day, I met with the neurologist. He explained what MS was, informed me of the two separate incidents 'rule' and encouraged me that I may never have another episode. I went off happily and got on with life. Feeling gradually returned to my lower half and my only symptom was an occasional dragging sensation in my spinal cord. I had three babies with normal deliveries, was exhausted by them, went on holidays abroad, endured the stress of several house moves and generally survived the rough and tumble of life experienced by working mums everywhere. Any thoughts of MS faded from my life.
Diagnosis Last summer we spent a day on a barge. The following day I felt I was suffering from sunstroke. I was thick headed and the ground felt unsteady. I was unhappy driving. The next day I was very sick and by day three we called the doctor, who diagnosed labyrinthitis and gave me an antisickness injection and pills. My own GP then upgraded me to acute vestibular neuritis and upped the anti-sickness medication. I lay quietly in bed and tried to eat and drink something every day. On day five my face fell. That wasn't attractive. It felt tight and itchy and I looked hideous in the mirror. I still wasn't concerned and only towards the end of the day did we call NHS 24 for advice. Of course, that set everything in motion! I was whisked off in an ambulance and scanned for signs of a stroke. Next day I was transferred to the Western and their excellent Neurology Department. Now I still didn't think this was serious. I thought they were just making sure and then I would be sent home to rest until the 'virus' passed. That naivety didn't last long. After a day of tests the registrar came for a chat. His opening words were that I must know this was serious. I gulped and then came the news it was possibly a brain tumour or some sort of MS attack in my brain stem. That was the first time I made any connection. I nearly cried with relief as I told him of my episode nearly 20 years ago. Notes were retrieved, steroids administered and I was sent home to see what was going to happen next. For the first time things suddenly became unpleasant and frightening. I had never researched MS before as I wasn't sure I had it. Others in my family suffer with it, but the details were vague. Friends and family gathered round offering love and support, but always full of questions. Work colleagues called and asked when I'd be returning to work, the children wanted to know when we would be back to normal. Terrifyingly I didn't have any answers, but even worse, nor did anyone else. Of course the web was a double-edged sword. Excellent sites provided some information and
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guidance, but there seemed even more horrifying pieces out there. I felt there was no certainty, nothing to hold onto and at my feet a gaping hole of horror was opening, threatening to engulf me and my family. It sounds very melodramatic, but in the wee small hours my mind would whirl with questions and scenarios that threatened to overwhelm me.
The power of good information It was such a relief to attend that first meeting for those newly diagnosed with MS. It was the first of a series of six hour and a half sessions on consecutive Wednesday nights. The wonderful MS nurses, Mathew and Nicola, provided tea and coffee and biscuits. Everyone else in attendance was just like me; confused, shocked, overwhelmed but most importantly, keen to get back to normal life. At first there was an embarrassed politeness in the room, but very quickly we were chatting and comparing experiences. Now secretly I had dreaded this bit the most as I am not fond of medical details. I needn't have worried. Everyone had such a different tale to tell and was full of positive tips about what had helped them. Nicola had to work hard to stop the chat and gain everyone's attention. We then had a talk from one of the hospital's neurologists. Not a lecture, but a useful, factual discussion. We asked questions, were shown recent research and pointed to websites for further information. I am not sure that I learned a great deal of new information, however all that I already knew came together and was put firmly in context. The terrifying hole snapped shut, and my fears disappeared to be replaced by manageable concerns. It wasn't magic, just the power of good clear information, calmly delivered. And that is how the sessions progressed. We met an occupational therapist, a nutritionist, members of an MS charity and a further neurologist. At all times Mathew and Nicola were there dispensing wisdom, humour and refreshments. We discussed issues regarding work, pregnancy, medication, research, diet, exercise and coping strategies. In fact there were few definitive answers, but the advice and experience of the professionals and those who sat beside me were invaluable. My husband attended the sessions with me. This meant he could ask his own questions and I didn't have to explain to him facts I couldn't yet fully grasp. It has been quite a year. I would fully agree with those who compare life after MS diagnosis to a rollercoaster ride. Nothing, it seems, will stop the forward motion with its highs and lows, but the sessions I attended at the Western have given me a firm handle to grasp onto and that has helped me to smooth out the ride.
Information for people recently diagnosed with MS from the MS Trust Books MS: what does it mean for me? a practical and positive introduction to MS MS explained a book for anyone who wants to understand the mechanisms of MS and what causes symptoms to occur. Both titles are free and can be ordered from the back page or from www.mstrust.org.uk/pubs
Website A good place to start is What is MS www.mstrust.org.uk/what-is-ms or the A to Z of MS www.mstrust.org.uk/atoz
Information service If you have specific questions about MS, symptoms or treatments, the MS Trust Information Team can help you find the information you need. Call us on 0800 032 3839 or email infoteam@mstrust.org.uk See page 3 for more on our research into the information needs of people recently diagnosed
Freephone: 0800 032 3839
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How we made a difference for people living with MS in 2011
At the beginning of each year we take time to reflect on what we have done in the previous twelve months and ask ourselves, “Has it made a difference to people living with MS?”
Supporting people with MS Living with MS can be a lonely business. The support and quality information that the MS Trust provides - every day of the year - is invaluable. Thank you MS Trust! Alan Beevers, diagnosed with MS in 2003
Since the MS Trust was established in 1993 we have learnt many things. We started out by producing an information pack for people diagnosed with MS and a regular newsletter. People responded to us with questions and it is this ongoing conversation that has helped us identify the areas of real concern for people affected by MS. People tell us that the information we offer is vital, but they also tell us that what the MS Trust really gives people living with MS is someone to talk to, reassurance and hope for the future. Whether someone is simply requesting a copy of a book or calling with a complex question about their MS, people can be assured that there is someone at the end of the phone at the MS Trust who wants to help. We have learnt that, aside from the symptoms, the hardest things to deal with when you have MS are the unknowns. We can’t take away the uncertainty, but we can provide the facts and help people better understand their MS. A vital element of our information service is that it based on evidence and can be trusted - particularly important with the breadth of information now available via the internet. In 2011 the MS Trust was awarded the Information Standard by the
Department of Health meaning that our information has been certified as trustworthy health information. Another crucial factor in our information service is that it is accessible to all and provided free of charge. We answer enquiries via our freephone number, by email and letter and through social networking sites. Our books and factsheets are distributed by MS nurses and local support groups as well as direct from our office and are downloadable from our website. This brings us to one of the biggest challenges we faced in 2011. Like many charities, the MS Trust has seen a drop in its income in the last few years and it has become significantly more difficult to raise the funds to pay for our work. The MS Trust needs to raise almost £600,000 each year to fund its information service and demand is increasing all the time. Attracting financial support for our work is often difficult; we receive no government funding for this service. It is difficult for those not affected by MS to understand the impact of the condition and how important reliable information is. We want to ensure that our information and support remains freely available to all, but we need your help to do it.
2011 in numbers
2,436
65,785
3,273
496,388
requests for support from the Information Team
publications sent out
copies Primary Progressive MS Exposed sent out
views of the A to Z of MS pages on our website
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Supporting MS services I have been a specialist nurse in MS since 1997 and throughout that time have been supported by the MS Trust. The MS Trust is always at the forefront of any campaign or strategy to improve MS care. Even more importantly they provide a quality service to those with MS. Nicki Ward-Abel, MS specialist nurse The MS Trust is committed to supporting and developing MS specialist services in the UK because we believe that this will result in the best care for people living with MS and we know how much people value the health professionals who support them. We work hard to produce evidence to identify what is required and demonstrate the value of specialist services. Once services are in place, we provide specialist education and continuing professional development for health and social care professionals to ensure high quality services are maintained. Whilst many people assume that this will be provided by the NHS, unfortunately it is not, which is why the MS Trust’s education programme is a vital factor in building MS specialist services in the UK.
Physicians. We found there has been no major improvement in many aspects of service provision for people with MS since 2006 and that one third of NHS trusts have no plans to improve neurological services in the next year. The MS Trust is determined to improve services for people with MS by continuing to monitor progress in the NHS and provide evidence to show where services are lacking.
In 2011 we funded research to help us define the value of MS specialist nurses and to help us map where services do and do not exist. Through our MS Nurse Support Programme, we provided one to one mentoring and advocacy to specialists facing reviews of their services and a range of tools to help them audit their own services and to demonstrate their own value. 2011 also saw us complete our third audit of MS services in partnership with the Royal College of
Making a difference together We would like to take this opportunity to say thank you to everyone who has supported us in the past year and enabled us to provide vital support to people affected by MS and the MS specialists who work with them. Every year demand grows for our services and our team of 29 people continues to meet those demands. In 2012 the MS Trust needs to raise ÂŁ1.5 million to fund its services. If you can help, please do. To find out how you can support the work of the MS Trust, ring 01462 476700 or visit www.mstrust.org.uk/fundraising Read the Annual Review at www.mstrust.org.uk/annualreview
486
4,103
764
5,094
health and social care professionals attended our educational events
readers of Way Ahead, our newsletter for health professionals
local resources listed on our map of services www.mstrust.org.uk/map
miles run by the 454 runners who raised ÂŁ248,827
Freephone: 0800 032 3839
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New from the MS Trust
Order form For a full list of publications visit www.mstrust.org.uk/pubs
DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises
Books Are you sitting comfortably? - posture when sitting At work with MS Living with fatigue - REVISED MS explained MS: what does it mean for me? Primary progressive MS exposed Sex and MS - a guide for men Sexuality and MS - a guide for women Spasticity triggers - NEW
Factsheets Regularly updated, we now have more than 20 titles available including Cognition Fingolimod (Gilenya) Functional electrical stimulation (FES) Pregnancy and parenthood Spasticity and spasms Talking about MS Vitamin D
Muscle stiffness and spasms can be made worse by complicating factors such as bladder and bowel problems, skin damage and infections. Treating these trigger factors is important when trying to manage symptoms effectively. Spasticity triggers allows readers to build up a list of the factors that may be affecting their own symptoms and includes a diary to help spot patterns that may help identify triggers. An interactive version on the MS Trust website helps readers build up their list of triggers online www.mstrust.org.uk/spasticity-triggers
Living with fatigue revised
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
I enclose a cheque payable to the MS Trust I want the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.
Signed
Spasticity triggers
Date / /
I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 28p of tax on every £1 that I gave up to 5 April 2008 and will reclaim 25p of tax on every £1 that I give on or after 6 April 2008. Please notify us if you change your name or address.
Name Job title (if health professional)
An updated and redesigned edition of the MS Trust's most popular book is now available. The book is full of ideas to help people manage their fatigue and take steps to reduce the impact it has on daily life.
Chatroom - 16 May Understanding and coping with the change from relapsing remitting to secondary progressive MS can be challenging. With fewer relapses and disability gradually increasing, approaches to treatment and managing symptoms can change. For some people this can feel like being diagnosed a second time with a new range of unknowns and uncertainties. On 16 May an MS Trust chatroom will explore this topic and offer the chance to ask questions of health professionals online or to share thoughts with other people with MS
Address
Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
For more details visit www.mstrust.org.uk/chat. If you are unable to join the chatroom, you can email questions in advance to info@mstrust.org.uk or post them to the MS Trust.
Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353
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