Open Door November 2018 by MS Trust

Open Door Quarterly newsletter of the MS Trust

November 2018

Celebrating 25 years of the MS Trust Also in this issue 15 minutes with Radio 1 presenter Scott Mills

MS and cannabis: what you need to know

Ask an expert: spasticity and spasms

Staying active: parkrunning with MS

Welcome to the November issue of Open Door In this issue we’re celebrating 25 years of the MS Trust - and what a quarter of a century it’s been! Here at the Trust, we’re very proud of our history and the vital work we’ve been involved in over the years to make sure nobody has to manage MS alone. You can read about some of the ways we’ve supported people with MS over the past 25 years, plus what we’re doing to support people in the future too, in a special feature starting on page 11. None of our work would be possible without our amazing supporters. A massive thank you for

everything you do. If you’d like to know more about how you can support the MS Trust and help make a difference for people with MS across the UK, there are lots of fundraising ideas on page 20 and 21. Elsewhere in this issue, physiotherapist Katrina Buchanan answers your questions on spasticity on page 18; our information team gives us the lowdown on medicinal cannabis on page 16, and we hear from Open Door will parkrun’s new MS outreach ambassador on page always be free to our 14. readers, but it costs us £2 As this is the last Open Door of 2018, I’d like to produce and post each to end by wishing all our readers, supporters issue to you. and friends a wonderful festive season. If you’d like to donate to David Martin, Chief Executive, MS Trust cover these costs text

How we’ve been working hard for people with MS since our last issue

OPEN44 £2 to 70070

Bringing a new Advanced MS Champion to Salford We’re delighted to announce that we have now appointed our first Advanced MS Champion. Lindsay Lord will be based at Salford Royal NHS Foundation Trust and we know she’ll make a huge difference to people in the local area who are living with the complex and often devastating symptoms that characterise advanced MS, as well as providing much-needed support to families and carers. This is just the beginning. We’ll be funding a further five champions at sites across the UK over the next three years, which will benefit an estimated 5,000 people with advanced MS. Find out more about this vital work at mstrust.org.uk/ams.

Supporting your nurses and therapists at our annual Conference Did you know that every year hundreds of MS health professionals attend our annual Conference? Now in its 22nd year, the Conference – which is the biggest conference for MS health professionals in the UK - gives your nurses, therapists and neurologists the opportunity to update their knowledge, share their expertise, and focus on delivering an even better service for the 110,000 people with MS in the UK. We know that MS can be a complex and unpredictable condition, so we believe that health professionals who know all about the condition and what it’s like to live with it, can make a world of difference to everyone affected by MS. Find out more about our work with MS HPs at mstrust.org.uk/health-professionals. Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353 2

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

What’s inside? 4

News Ocrelizumab rejected for primary progressive MS, final Risk Sharing Scheme data published, and jewellery range for people with MS

New research on whether cocoa can help with MS fatigue and a personal insight into an MS clinical trial

Helping young people get to grips with MS It can be difficult enough for a person with MS to get their own head around the condition, let alone attempting to explain to children why mum or dad can’t play football in the park because of MS fatigue, or can’t hug them because of muscle spasms or intense pain. MSTV, the MS Trust’s YouTube channel for young people affected by MS, can help shed some light on what can be a very confusing condition and make those difficult conversations a little easier. It features videos on a range of MS-related topics, presented in a way that’s engaging, informative and accessible for young people. Check it out at youtube.com/mstvuk.

Celebrating 25 years of the MS Trust We reflect on our story so far and look ahead to the next 25 years

14 parkrunning with MS

How parkrun is becoming more accessible for people with MS

Focus on: medicinal cannabis Our Information Team looks at what the new laws on medicinal cannabis might mean for people with MS

Ask the expert: spasticity and spasms Physiotherapist Katrina Buchanan answers your questions on spasticity and spasms

Cheering on our amazing runners at the Great North Run Back in September, our team of 34 runners took part in the Great North Run in Tyneside and it was great to meet so many of you at the finish. We are so pleased that the team have raised over £12,000 to support people with MS today. We would like to say a huge thank you to our volunteers Anne and Jim who helped on the day, along with our physio volunteers Fran, Katie, Rebecca and Abbie. If you watched the race and felt inspired to take part, why not sign up to run for the MS Trust next year? Register at mstrust.org.uk/greatnorth.

Back in the saddle Diane has her sights set on Paralympic dressage glory

Supporting you with information you can trust Our info team has been busy reviewing and updating our books, Managing your bowels and Managing your bladder. These books contain practical ideas and suggestions to help you manage bladder and bowel problems. We have also updated our books on primary and secondary progressive MS to ensure they are up to date and contain the latest research. You can order the revised editions of these books using the form on the back page or through our website at mstrust.org.uk/shop.

Research update

Get involved The MS Trust’s special connection to Christmas, a fundraising challenge with historical significance, and lots of other ways to get involved with our work

15 minutes with Scott Mills We chat to the Radio 1 DJ, whose mum has MS

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Affected by any of these news stories? Call our info team: 0800 032 38 39 Keep up to date with the latest MS news by signing up for our regular email round-up mstrust.org.uk/keepintouch

News Ocrelizumab rejected for primary progressive MS The MS Trust is hugely disappointed that NICE is unable to recommend ocrelizumab as an NHS treatment for early primary progressive MS (PPMS) in England and Wales. The Scottish Medicines Consortium (SMC) is currently reviewing ocrelizumab for PPMS in Scotland and we should know the outcome by early December. NICE acknowledges that primary progressive MS (PPMS) can have a substantial impact on the lives of people with the condition and their families. They also recognise that clinical trials have shown that ocrelizumab (Ocrevus) can slow the worsening of disability in early, active PPMS, allowing people to continue working and remain independent for longer. However, NICE decided that the benefits gained from ocrelizumab treatment do not represent value for money to the NHS when compared to the cost of routine NHS treatment that NICE considers to be provided for people with PPMS. The manufacturer’s proposal to provide ocrelizumab at a reduced price for PPMS has also been rejected. This announcement confirms NICE’s original decision announced in June. As this is a final decision, the appraisal process provides very limited opportunity to persuade NICE to change their verdict, but the MS Trust will continue to campaign for equitable, effective and efficient care for everyone living with MS. The MS Trust has contributed throughout the consultation. Before preparing our submission to NICE, we conducted a survey to gather the views of those affected by PPMS. We received nearly 500 responses from people with

PPMS, their families and specialist MS health professionals. We are very grateful to everyone who contributed their experiences of living with PPMS. Jo Sopala, Director of Health Professional Programmes at the MS Trust, commented: “There are currently no approved treatments for PPMS and people with this form of MS experience disability significantly quicker than those with other

“People with primary progressive MS risk becoming the forgotten people with MS and it is critical that NICE overturn the decision”

forms. The lack of treatments that can modify their disease often forces them to rely on wheelchairs and mobility aids sooner, impacting on their independence. “People do everything they can to minimise the impact PPMS has on their lives, but what they really want is access to treatment which will slow down the progression of their disease. They risk

Stay up-to-date with this news at mstrust.org.uk/news

becoming the forgotten people with MS and it is critical that NICE overturn the decision for ocrelizumab as soon as possible. “People with PPMS have been desperately waiting years for a treatment that can slow the progression of their disease, they should not be deprived of the hope that a disease modifying drug offers now that there is a licensed treatment.” The introduction of a treatment for PPMS might also have generated a greater focus on services for progressive MS and a more proactive approach to managing PPMS which would ultimately have benefited a much wider group of people with PPMS than just those who would have been eligible for ocrelizumab. The introduction of disease modifying drugs for relapsing remitting MS has been the catalyst for significant improvements in MS services for people with relapsing MS. A survey conducted by the MS Trust in 2016 found that on average, people with progressive MS are seeing MS specialists much less often than people with relapsing MS.

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

We bring new nurses to Hull, Lothian and South Tees

Kimberley on her wedding day and the necklace design

Supporter designs MS necklace MS Trust supporter Kimberley Carey has designed a special pendant necklace to raise awareness and funds for the MS Trust. Kimberley, who was diagnosed in 2017, has been working with top jewellery brand Steff on the rose gold and silver charm pendant, which she hopes will signify strength and courage for the MS community. The necklace retails at £60, with £20 from each sale going towards the work of the MS Trust. Kimberley commented: “I have chosen the MS Trust as the charity was of great help and support to me in early diagnosis and the Facebook group is fantastic for the MS community. It is my way of ‘giving back’ in a way. I really think it’s a great way to raise awareness and togetherness of us all living with MS day to day.” We’d like to say a big thank you to Kimberley for her support. If you’d like to purchase a necklace, go to steff.co.uk.

MS Trust featured in the BBC Lifeline Appeal The MS Trust was thrilled to be featured in the September BBC Lifeline Appeal. Our appeal was presented by Radio 1 DJ Scott Mills, whose mum has MS (read our interview with Scott on page 22). “I was really happy to present this film on behalf of the MS Trust,” commented Scott. “The MS Trust provides support to everyone affected by MS, in so many different ways. I really admire them as they focus on supporting people living with MS now.”

The appeal also featured the stories of some of our amazing supporters, who spoke about the difference our information and the MS Trust-funded MS specialist nurses has made to their lives with MS. If you missed the appeal, you can now watch it on our YouTube channel at youtube.com/mstrust. Thank you to everybody who has already supported our appeal. We are so grateful.

Over the past year, through our pioneering Specialist Nurse Programme, we have been bringing new MS specialist nurses to areas across the UK that need them most. Having already funded nurses in Leicester, Bradford and Lanarkshire, we are thrilled to announce that the next three areas to benefit from the Specialist Nurse Programme will be Hull, Lothian and South Tees. This is all part of our campaign to make sure that no one has to face MS alone. Thanks to your amazing support, we plan to fund more nurses in the coming months and years, and will be announcing the next sites very soon. If you would like to help support our vital work with MS nurses, please do get in touch with our fundraising team to find out more about how you can get involved. Email Read more about our fundraising@ work with MS nurses at mstrust.org.uk or call 01462 mstrust.org.uk/nurses 476707.

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

NEWS

Final data from the MS Risk Sharing Scheme published The MS Trust has praised the pioneering work of the MS Risk Sharing Scheme (RSS) following the publication of the final data in the Journal of Neurology, Neurosurgery and Psychiatry. “The RSS was a truly innovative scheme and continues to deliver real benefits for people with MS,” commented David Martin, CEO of the MS Trust. “Not only has the scheme enabled over 18,000 people with MS to access disease modifying drugs (DMDs), but it has also been the catalyst for the development of MS services, completely transforming the landscape for the 110,000 people living with MS across the UK. “As administrator of the scheme, we are proud to have contributed to what has been achieved, but we won’t be resting on our laurels. People with MS still face many challenges and we will continue to fight to ensure everyone has access to the best possible treatments and MS services, now and in the future.” The MS Risk Sharing Scheme was the first scheme of its kind in the UK . It enabled people with MS to access the

original four disease modifying drugs (Avonex, Betaferon, Copaxone and Rebif) on the NHS. It was established in 2002 following an assessment by the then National Institute for Clinical Excellence (NICE) of the four DMDs. It concluded that, while clinically effective, these drugs were not cost effective and therefore should not be made available on the NHS. The Department of Health, working with the four drug manufacturers and other key bodies from the MS community, including the MS Trust, set up the scheme to ensure the DMDs could be prescribed to people who met the criteria for treatment. Over 5,000 of these people were included in a monitoring study to evaluate the cost effectiveness of the drugs over a 10-year period. The final results from the scheme, published back in September, show that the DMDs are cost effective and clinically effective in reducing the progression of the disease in people with relapsing remitting multiple sclerosis. These long-term findings have the potential to

genuinely inform and change the way in which MS is treated. The RSS has also had a huge impact on the growth and development of MS services across the UK. The number of MS nurses has risen from 80 to over 240, there has been a significant increase in the number of physiotherapists, occupational therapists and neurologists specialising in MS, and over 70 specialist MS centres have been set up To find out more about across the UK. the RSS, visit In addition, the mstrust.org.uk/RSS RSS has funded education for all MS specialist health professionals.

Simvastatin trial for SPMS begins A trial exploring whether a cholesterol lowering drug can slow progression in people with secondary progressive MS has started recruiting. MS-STAT2 will involve 1,180 people with secondary progressive MS at up to 30 sites across the UK. Participants will take either simvastatin or placebo for three years. Results of the trial are expected in 2023. A previous study (MS-STAT1) included 140 people with secondary progressive MS who took either simvastatin or placebo for two years. The study found that the level of brain tissue loss, an indicator of MS progression, was lower in the simvastatin group. Simvastatin belongs to a class of drugs called statins which are used to lower cholesterol. The dose being used in this trial is at the top end of the range normally recommended for managing cholesterol levels. To find out more about the trial and to express an interest in taking part, visit the UCL Queen Square Institute of Neurology website at ms-stat2.info.

MS Trust Christmas opening hours The MS Trust will be closed on Christmas Eve, Christmas Day and Boxing Day, reopening on Thursday 27 December. Our Enquiry Service team will be here on 27, 28 and 31 December to support you over the festive period. Do give us a ring if you have any concerns about your MS. Normal hours (9am-5pm, Monday to Friday) will resume on Wednesday 2 January 2019. Call 0800 032 38 39 or email infoteam@mstrust.org.uk.

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Research update

Keep up to date with the latest MS research by signing up for our email mstrust.org.uk/keepintouch

Could cocoa help MS fatigue? Cocoa is a drink traditionally associated with bedtime, so the idea that it could reduce fatigue in MS might seem unlikely. However, cocoa contains flavonoids, naturally occurring chemicals found in plant-based foods, including dark chocolate with cocoa levels of over 70%. In theory, flavonoids could improve fatigue in a number of different ways. This has never been investigated, so researchers at Oxford Brookes University carried out a small study to test whether drinking cocoa rich in flavonoids might improve fatigue. Authors Coe S, et al Title Flavonoid rich dark cocoa may improve fatigue in people with multiple sclerosis, yet has no effect on glycaemic response: An exploratory trial. Journal Clinical Nutrition ESPEN 2017; 21: 20-25 Read the summary https://tinyurl.com/yb6xecxw

The study

The results

12 participants with MS fatigue were asked to attend two study visits. To ensure as much consistency as possible between study days, participants were asked to eat the same diet on the day before each visit, avoid vigorous exercise and to limit their alcohol and caffeine intake on the day prior to testing. On study days, participants were given either a low flavonoid or a high flavonoid cocoa drink. Participants were not aware of which kind of cocoa they were drinking. The two drinks were matched as closely as possible for carbohydrate and energy content. Some of the participants were following a diet which excludes dairy, so the drinks were made with rice milk. After drinking the cocoa, participants recorded their fatigue level at 30 minute intervals using a visual analogue scale - a line labelled ‘not at all fatigued’ at one end and ‘extremely fatigued’ at the other. Distance walked in six minutes was measured two hours after the drink and physical activity recorded for 24 hours with a wrist-worn activity sensor. Glycaemic response - changes in blood sugar levels – was also monitored for two hours after the drink.

All participants drank and enjoyed the cocoa and were happy with what they were asked to do on each study day. No side effects were reported and neither of the drinks caused an excessive increase in blood sugar levels. In the high flavonoid group, self-reported fatigue levels were moderately improved and 24 hour physical activity was increased. There was more activity during the sleeping hours (10pm9am) after the low flavonoid cocoa. There was no measureable change in distance walked in six minutes.

What does it mean? The researchers’ primary aim was to test the feasibility of carrying out this type of study rather than generate evidence on the effectiveness of high flavonoid cocoa in reducing fatigue. The study was small and involved just one drink of each type of cocoa. Having said that, the results do suggest that a single drink of high flavonoid cocoa reduced selfreported fatigue, led to increased physical activity during waking hours and less activity during sleeping hours, suggesting improved sleep quality. The researchers concluded that the drink was safe and acceptable and that the

encouraging, preliminary results merited further investigation. They have recently completed a study with 40 participants We’ll share the results when they are published.

How diet and nutrition can help with fatigue A healthy, well balanced diet with plenty of fruit and vegetables plus complex carbohydrates, some protein-rich foods such as meat, fish and lentils and not too much fat, salt or sugar is required to provide optimum energy levels. A poor diet or eating habits can leave the body lacking in the fuel needed to get through the day. Although food and drinks high in sugar give an initial boost, blood sugar levels quickly drop again leaving your energy levels low. High sugar foods and drinks are often For more low in nutrients, and the extra information on calories can fatigue, visit cause unwanted mstrust.org.uk/ weight gain, fatigue which can also increase fatigue.

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

RESEARCH

Hellie’s clinical trial adventures A few months ago, Helena decided to take part in an MS clinical trial for the drug bexarotene and has been vlogging and blogging about her journey for the MS Trust. Here she tells us about why she wanted to get involved and ‘do her bit’ for the MS community, and how she’s found the experience so far.

Why would you take part in a clinical trial? Yes, that is a good question. Do you do it with the hope of getting ‘fixed’? Or do you like the idea of perhaps paving the way for others to get ‘fixed’? Maybe you just like the idea of being part of research and doing something for the greater good of the MS community? Or perhaps the promise of pay? For myself it felt very appealing to do something that might help the MS community. I didn’t expect to get fixed or paid. Well, paid I definitely didn’t get, and fixed, sadly no, but I feel like I have been a useful number in the study I took part in. But let me rewind a bit.

on with work, then in my lunchbreak I reread it again. Told my workmate about it and asked her, do you think I should email my MS nurse to see what she thinks? My workmate nodded approvingly. So I sent the email and almost immediately came a reply from my nurse saying, “I think you would be a good candidate, should I put your name forward and you can have a chat with them?”. It was all going rather fast, but no time like the present I thought, so I said yes.

Do I or don’t I?

Things escalated quickly after that. Calls were made and papers were sent and read. But when I received the outline of the trial, listing potential I was sitting at work, going through our I have participated in side effects of the drug, I got worried. It listed social media posts, when I suddenly saw the something that brings hope an awful amount of side effects and then this: headline ‘A trial of a possible remylination “The majority of side effects resolve without to fellow MSers” drug in MS.’ It piqued my interest and so I consequence when the dose is reduced or clicked on the link. stopped, and occur most frequently with higher In short, this is a trial where they are looking doses than those we are using in this trial. However, at a drug called bexarotene and if this drug can two patients (out of 810) have died directly as a result of stimulate cells in the brain to repair damaged myelin. It bexarotene side effects (one due to pancreatitis; one seems that in animal studies this type of drug has done so. This due to a bleed in the brain).” would mean that remylination, as it is called, would happen and Riiiiiiight, death, that’s a rather serious ‘side effect’. I put the potentially reverse or alleviate MS symptoms. If this works it would papers down and thought, hmmm maybe not for me. be huge! But then I thought about it some more, talked to my husband, The trial wants to establish whether the drug causes side effects spoke to a person from the MS Trust information team and I for people with MS who are already on disease modifying drugs, spoke to the doctors behind the trial. I learnt that you would be as well as seeing if the drug actually can promote remyelination. so carefully monitored during the trial, that the risk of anything When I have looked at clinical trials in the past, I have never met bad happening was minimal. So feeling better about it and the criteria. But this time it seemed like I would be the perfect feeling like I was in very safe hands. I signed up to become a ‘lab candidate for it. rat’. So I read it, and reread it, then I closed the blog down. Got

The adventure begins

“I’d like to think that

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

I am now half way through the trial and something The main reason why I that has surprised me most about it is the way decided to blog and the doctors talk to you. It isn’t at all like when vlog about my you go to your GP and can sometimes feel experience of “All my interactions so a bit belittled. All my interactions so far the trial was to have been fantastic and you almost feel document the far have been fantastic and like you are part of the team. Even if you journey, but you almost feel like you are are just the lab rat. There’s no talking also because part of the team” down to you, you don’t feel stupid for I knew very asking questions and what I like best of all little about is that they are all so enthusiastic about the what it entailed; trial. what you should think about beforehand For the greater good and what possible issues This brings me back to the point above about feeling like you are there would be. So I thought that by doing something good; being part of something that can change making this account of what was going on in my head and also things. I would like to think that, whatever outcome this trial has, what the trial was like, I would help others to make their mind up that I have participated in something that brings hope to fellow in taking part in trials themselves. MSers.

You can read Hellie’s blog at mstrust.org.uk/helliesclinical-trial-adventures

BEXAROTENE How does bexarotene work?

Myelin is a fatty protein that forms a sheath around the axons of nerve cells - the part of the cell that transmits messages to other nerve cells. Myelin acts as insulation to the axon and helps maintain the speed of transmission of messages. In the central nervous system, myelin is produced by cells called oligodendrocytes. Damage to myelin (or demyelination) caused by multiple sclerosis interrupts or blocks nerve messages. In the earlier stages of MS, oligodendrocytes can often repair areas of damaged myelin - a process known as remyelination. As MS becomes more established, these cells stop functioning or are killed off and myelin is not repaired, resulting in increasing disability. Bexarotene binds to special locations (receptors), called retinoid X receptors, on oligodendrocytes. Laboratory studies have found that drugs which act on these receptors can encourage oligodendrocytes to remyelinate, offering the potential to reverse damage caused by MS and improve symptoms. Bexarotene is currently used as a treatment for certain types of skin cancer.

What research is currently being done into bexarotene? This phase II study which Hellie is taking part in has recruited 50 people with relapsing remitting MS who are currently taking a ‘first-line’ disease modifying drug, which includes Avonex, Betaferon, Extavia, Plegridy, Rebif, Copaxone, Brabio, Aubagio and Tecfidera. Half of the participants are taking bexarotene and half will take placebo for six months, in addition to their current disease modifying drug. The main aim of the study is to monitor the safety of taking bexarotene in people with RRMS. In addition, the study will assess whether bexarotene can promote remyelination by comparing MRI scans, measuring EDSS and visual evoked potentials. Further details on the study can be found at: tinyurl.com/bexarotene-study

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

MY M S S TO RY

“It is the best therapy” When Diane Green was diagnosed with progressive MS, she thought her riding days were over. But now, 17 years later, Diane and her horse Winnie have their sights set on the Paralympics in 2020. Diane shares her inspiring story. When I suffered a horrific head and facial injury after being kicked in the face by a horse I was leading, and was then diagnosed with MS 10 years later, I thought my riding days were over. Until some 17 years later a consultant suggested I should go back to riding as I was struggling to sit up unaided for long and he thought it would be good for my core strength.

Beans the wonder pony That is when I met the Watershed Riding for the Disabled Team and Beans the wonder pony. At first I cried each time when I got home. I was nervous when I rode and couldn’t last more than 10 minutes at a time. I had to have two walkers either side of me and someone leading Beans. Very upsetting for someone who in a previous life had had horses at Grand Prix Dressage level and I was sad that I couldn’t see that I would ever get that back. As the months went by I got stronger physically and could sit up unaided again (something I had struggled to do, being reliant on sitting in my wheelchair or on the sofa). I became more confident until I was able to move from the steady neddy that was Beans and start to ride off of the lead rein and onto Connor, who was a much sharper pony and a real character. I started doing some video dressage tests with him and at the end of our first year together we won a silver medal in the RDA online National Championships 2015. It went so well I made the decision to seek out a dressage trainer and found Sara Gallop at Summerhouse Equestrian Centre. After a few months together she suggested I get my own horse and have a go at Para-dressage - so she found me the perfect horse, Winnie, who we nickname the unicorn.

Back in the saddle Winnie and I joined the British Dressage South West Para Dressage Team in January 2016 and we were selected to represent the region at the Inter County Championships. We were then selected to represent England at the Home International held at Vale View, Melton Mowbray. Winnie and I won all four of our tests and our team were 3rd, the highest placing they have ever achieved at this event. I also won the top prize for the highest scoring rider of the weekend.

“It helped me to sit up unaided again, something I had struggled to do before”

Paralympics in our sights In 2017 I applied for entry onto the Team GB training platform and have been selected, and we are now working towards a Paralympic Team place in Japan 2020 and beyond. Becoming an international Paraathlete was a dream when I started and to have achieved it in such a short time has been amazing. Without Watershed RDA I would not have started on this journey with Winnie and I owe them so much. I have come to terms with the fact that I will never be able to ride a Grand Prix test but I can still ride a quality horse and compete at the highest level. In the early days of my diagnosis there were times when I would be at home for

weeks at a time without venturing out in my wheelchair - some very dark days. Now I drive a car independently with hand controls and ride Winnie 3/4 times a week, with a competition most weeks too. And I am back at Watershed coaching three other budding dressage stars, including Penny who also has MS and like me is finding it to be fantastic therapy.

A life-changing journey When you are diagnosed with MS it is a very frightening thing. I left the neurologist’s very unsure of what the future would hold. But my doctors have seen a real change in me since I took up riding. They say they wish they could bottle what I have and give it to patients as I breeze in on my scooter with such optimism and fun. I told him to get horse riding added to the treatment list but I am not sure how NICE would react to that. I now really don’t worry about the future. I am back doing the sport I love supported by a new team, and Winnie of course who really has changed my life. I would recommend to anyone who has had the same diagnosis to have a trip to your local RDA centre – you may not have Paralympic ambitions like me but it is the best therapy you can get and I know you will Find out love it too more about - just be hippotherapy and prepared therapeutic horse riding to smile and laugh at a lot! mstrust.org.uk/

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

hippotherapy

C E L E B RAT IN G 2 5 YEARS

25 years of the MS Trust 2018 marks 25 years since Chris Jones and Jill Holt founded the MS Trust. Over the past quarter of a century, we’ve supported thousands of people with MS and their families – but we know there’s still much work to be done to ensure nobody has to face MS alone. Over the next three pages we reflect on our story so far, and look ahead to the next 25 years. “My GP didn’t know; my neurologist thought I shouldn’t know; the books in the library were out of date; the internet didn’t exist. I couldn’t access the information I wanted because I wasn’t a doctor, but without medical training I couldn’t understand it anyway. We were told: ‘You’ve got MS; go home and learn to live with it’.” These are the memories of MS Trust co-founder Chris Jones, who was diagnosed with MS in the 80s. For Chris, and the thousands of other people living with the condition around that time, the landscape was bleak. The information available about MS was woefully inadequate; MS research was underfunded; specialist MS health professionals were few and far between, and the image of MS was often unduly negative.

In 1993, Chris and her good friend Jill Holt, whose mum had MS, decided enough was enough. Together they founded a small charitable trust to provide information, support and, perhaps most importantly of all, hope, to those people feeling like they had nowhere and no one to turn to. That charity was the MS Trust. 25 years later, it may be a very different picture for people with MS, and there may be new challenges to contend with, but our promise to be in the corner of everyone affected by MS remains. With your help, we vow to be there for the next 25 years too – and beyond - fighting to ensure everyone has the information and support they need to live their lives with MS.

Here are just some of the ways we have supported people with MS over the past 25 years The MS Trust, originally the MS Research Trust, is founded by Chris Jones and Jill Holt

1993

1995

Conference for health

The MS Trust

professionals working

Enquiry Service is

in MS

launched

1997

1998

Open Door is

Our first publication, The MS Information Pack, is sent out to every neurologist in the country

Turn over to read more

We hold our first annual

published for the first time

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

C E L E B R AT IN G 2 5 YEARS

“It’s like a family...” To mark 25 years of the MS Trust, we asked some of our supporters, staff and MS health professionals what the charity means to them.

“The MS Trust to me is symbolised by the name of this magazine: open door. When I was diagnosed, it felt like doors closed . I hope the MS Trust changed that for a lot of people” Chris Jones, MS Trust co-founder

“The MS Trust is a valuable source of knowledge, support and friendship. Here’s to the next 25 years” Gail Clayton, MS specialist nurse

“I couldn’t imagine doing an MS clinic without one of our MS nurses, nor being able to refer my patients to the MS Trust for evidence-based information. The MS Trust is indispensable to the way we practice MSology in the UK today, be it via training our specialist nurses or providing quality information in a way that is easily understood by patients” Gavin Giovannoni, MS neurologist

“The MS Trust is a special charity. It is small enough to know the people it’s supporting personally and big enough to make a real difference” David Martin, CEO of the MS Trust

“The MS Trust is like family you can rely on in times of need. I don’t know where we would be without them” Jim and Anne Thompson, MS Trust supporters

“I’ve been supporting the MS Trust since 2005. I’ve got to know the whole team over the years and many of them have become very good friends. They really are the nicest people you will ever come across and it is a great honour to do what I do for the MS Trust” Kenny Smith, supporter

Our Women’s guide to We run the first

Our new books MS

We launch our

sex and MS wins a BMA

foundation training

Explained and Exercises

Move it for MS

Patient Information

course for MS nurses

for people with MS are

DVD with Mr

Award

published

Motivator

2000

2002

2004

2006

2007

We work with the Royal College of

We help set up the MS Risk

2008

Sharing Scheme, enabling people

Physicians on the first of three audits

with MS to access DMDs

into the state of MS services in the UK

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

CELEBR AT ING 2 5 YE A R S

“10 years ago the MS Trust was there for me with helpful, accessible and easy to understand information just when I needed it most, when I felt there was no-one else to turn to. Understanding brings strength and empowerment, and this is what the MS Trust provides, then and now” Liz Thompson, supporter

“To our family, the MS Trust means sunshine. The late summer sun of a field by the sea in South Shields with aching limbs, shared smiles, hot mugs of tea and chocolate biscuits, all together at the end of the Great North Run. And the sunshine of brilliant, inspirational people whose energy and wisdom can, and will move mountains” The Porter Family, supporters

“From the very outset of diagnosis, the MS Trust were the ‘go to’ people for honest, informative and practical advice. To then discover they were responsible for the wonderful MS nurses just sealed it for us as to how much we value them. They have been there when we’ve needed them” Geoff and Jo Wessell, supporters

“The MS Trust truly resides in my heart. Since my diagnosis in 2008, the support offered by the charity has been invaluable. The Trust has been a huge part of my life post-diagnosis and has been key to me being able to live a positive life with MS.” Trishna Bharadia, supporter

Looking to the future

How you can help us make a difference Over the last 25 years, we’ve been there for people with MS. We’re still there for them today and with your help, we’ll be there for them tomorrow. To donate £2, £5 or £10 now, text MSTR01 £2 (or £5 or £10) to 70070. Thank you.

As we head into 2019, we have many exciting plans in the pipeline. In the next year, thanks to our amazing supporters, we’ll be bringing 10 more MS specialist nurses to the areas that need them most. We’ll be funding six Advanced MS Champions across the UK over the next three years. And we’re developing a new interactive selfmanagement resource to help people live well with MS. And we will, of course, continue to ask for your ideas on how we can make even more of a difference in the future.

We publish the results of We produce a new book

We host the European

our Is MS Care Fair? report,

for families affected

Rehabilitation in MS

highlighting inequalities in

by MS, Talking with your

(RIMS) conference in

MS services for people with

kids about MS

Brighton

progressive MS

2010

2012

We begin GEMSS, a project to generate evidence for the value of MS specialist nurses

2014

2016

We launch MSTV, our YouTube channel for young people affected by MS

2017

2018

We appoint the first MS Trust-funded MS specialist nurse and launch our Advanced MS Champion Programme

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

STAY I N G ACTIV E

Parkrunning with MS Since the first event back in 2004, parkrun has grown into something of a national phenomenon, with hundreds of thousands of people taking part every Saturday, come rain or shine. Now parkrun wants more people with disabilities and longterm health conditions to get involved, be it through running, wheeling, walking or volunteering. Katherine Goulder is one of parkrun’s Outreach Ambassadors for MS. Here she tells us how parkrun very quickly became part of her own Saturday routine and why others with MS should get involved too. knew parkrun was a ‘run not a race’, I was still nervous about I’d always said I couldn’t run and that I wasn’t built for it. It took a registering and lining up for my first event. In the end, I plucked diagnosis of MS to make me want to shake off these self-imposed up the courage for my first run when I was two weeks out of limitations and see what I could do. My MS diagnosis came out hospital after receiving treatment for my MS. of the blue. My initial symptoms were mild – nothing worse than I loved it – and afterwards wondered what I’d been scared numb toes and a spell of vertigo – but the diagnosis itself left of. No one was there to judge – just to cheer and encourage. me reeling. We knew nothing about the disease and feared the Running with other people, children, dogs and buggies around the absolute worst. beautiful Haysden duck pond was so much more fun than I’m sure we all know research suggests that for some people slogging it out on my own on a treadmill. Whilst I had regular exercise such as walking or running, can help to walk the last little bit, I was still proud of myself manage the progression of the damage and the “I loved it – for completing the course – and proud of myself symptoms caused by MS. Scared that one day not and afterwards for not letting fear of failure or being ‘a bit being able to even walk would be my reality, and wondered what I’d rubbish’ stop me from giving it a go. determined to make lifestyle changes to help been scared of. No one I’d started running because of my MS – keep me as well as possible for as long as possible, was there to judge – rather than allowing it to become another I decided to give running a go. just to cheer and excuse for not running it became the reason parkrun would be my chosen route into running. encourage” I wanted to try. Now, two years and over 50 parkrun is a brilliantly simple concept. On 2 October parkruns later, I’m still running because of parkrun. 2004 just 13 friends met for what would become a It’s a hobby I can share with my husband and friends weekly 5k ‘time trial’ at Bushy Park in London – parkrun (and even my little nephews are now getting in on the act!) and was born. From that one event 14 years ago, parkrun now has become an enjoyable part of our Saturday routine. happens weekly at over 1,600 locations in 20 countries. Every When I read about the parkrun PROVE project (which aims to Saturday morning friends come together to organise, walk, jog or increase participation at parkrun by people living with disabilities run their own local parkrun. Together, parkrunners have walked, jogged or run over 100 million miles at these free-to-enter events. or long-term health conditions) I immediately knew that this was something I wanted to be a part of, so I offered to step forward as More than 5 million people have taken part. But more important a volunteer Outreach Ambassador for MS. I’ve experienced firstthan the statistics are the friendships that have been formed and hand the benefits to physical and mental health that participation the communities that have been built . in parkrun, whether as a runner, walker or volunteer, can bring for My husband, a keen runner already sat on a couple of parkrun people with MS. That’s why I want to encourage more people with milestone t-shirts (awarded to those who complete 50, 100, 250 MS to participate at parkrun. or 500 parkruns), convinced me to give parkrun a try. Whilst I

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

“parkrun is genuinely accessible” When MS Trust supporter Tim Sorrell signed up to his first parkrun, somewhat reluctantly, he could never have imagined the positive difference it would make to his life. He explains what makes it so special. When I was younger, I loathed running. Running was something that you’re helping to create such a that I was occasionally made to do at school. I walked as often as I positive and welcoming environment is so thought I could get away with it and I simply couldn’t imagine why nourishing. anyone would want to do this sort of thing voluntarily. Fast forward Parkrun is genuinely accessible: whether a few years, and I think it’s fair to say that teenage me is very you run, walk, jog or volunteer, there’s a surprised and disappointed by what I’ve become. role for you. At my parkrun, Most weekends, I am up even earlier than my we’re proud of the fact that “Getting work day alarm clock to voluntarily take myself our event average time is involved in out for a run. Sundays are usually long run days, getting slower – this means your local parkrun but Saturday is parkrun day. that we’re becoming more as a volunteer or I ran before my diagnosis with MS, but it inclusive and encouraging more and more participant, will was always a purely defensive measure done people to start their parkrun journey. The PROVE introduce you to the reluctantly to try and limit the damage caused project at parkrun is also taking active steps to most wonderful by suddenly stopping all other forms of exercise try and encourage participation even further. At community” and discovering beer. You wouldn’t imagine my parkrun in Colwick, we’ve got a long and proud that there could be any reason to be grateful track-record of supporting visually impaired runners, for a diagnosis of MS, but in my case, it helped and it is my great pleasure to often act as a guide me to find a grit and determination that I didn’t know was there. runner for some genuinely inspiring individuals who don’t let their For some reason, the fact that a widespread numbness and pins loss of sight stop them from taking part in a sport they love. and needles was making running more difficult made me more Not everyone with MS is going to be able to run marathons – determined than ever to do it, and I went quite quickly from although some will – but I think that getting involved with your being a fairly casual jogger to being a fully paid up member of a local parkrun, as a volunteer or participant, will introduce you to running club and the kind of person who runs marathons. I have the most wonderful, supportive and lost a lot of strength on the left side of my body and most of the life-affirming community of Whether dorsiflexion in my ankle: distance running perhaps isn’t the most people. you’re an logical thing for me to be doing, but apparently that’s what I’m I can’t really even begin determined to do. It helps me to feel free and gives me a sense of to explain how much of a experienced runner or a achievement. MS has taken a lot of things out of my life, but I’m positive difference parkrun complete beginner, why not damned if it’s going to take this from me just yet. has made to my life, but get involved with our Running I discovered parkrun quite late: why would I be interested in a I’m excited for everyone Club? Find out more at timed 5km every Saturday morning? The idea of beasting myself to find out for themselves against the clock before breakfast every weekend just didn’t how the parkrun magic can mstrust.org.uk/running. appeal. Then I actually went along and discovered that parkrun transform their lives, both is so much more than that, it’s a whole community waiting physically and mentally. to welcome you. Before too long, I discovered that I enjoyed volunteering more than I did running. That sense of satisfaction

Find out more • • • •

Registration for parkrun is free and can be completed online at: parkrun.org.uk/register parkrun’s Facebook Group for people with MS is a closed safe and supportive environment for people with MS to share their experiences of parkrun and MS. It can be found here: facebook.com/groups/parkrun.for.people.with.multiple.sclerosis parkrun’s Strava Club for people with MS is a public space where members can record their walk or run performances. It can be found here: strava.com/clubs/parkrun-for-people-with-multiple-sclerosis Start the Couch to 5K run at: nhs.uk/live-well/exercise/couch-to-5k-week-by-week

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

FO CU S O N

Medicinal cannabis: A potted guide With changes to the legal status of medicinal cannabis imminent, Janice from our Information Team explains what these laws might look like and what this could mean for people with MS.

What is cannabis?

evidence to show whether smoked cannabis is effective or safe in MS. Cannabis is a naturally occurring drug made from parts of the Sativex is prepared from cannabis plants and contains THC cannabis plant. It contains many different compounds which are and CBD in equal proportions. It has been studied extensively in known as cannabinoids. The combinations and proportions of clinical trials and is licenced in the UK as an add-on treatment for these can differ widely depending on the strain of cannabis plant spasticity where other drugs have failed. and how the drug has been prepared. Although Sativex can be prescribed, it is not considered to be The two cannabinoids which have been studied the most are a cost-effective treatment for the NHS in England, Scotland or tetrahydrocannabinol and cannabidiol. Northern Ireland. In Wales, it is considered cost-effective and is Tetrahydrocannabinol (THC) is responsible for the approved as an NHS treatment, although availability is still psychoactive effect or ‘high’ that is associated with limited. “The cannabis use. Cannabis oils are extracts from cannabis plants. MS Trust will Cannabidiol (CBD) has anticonvulsant Unprocessed, they contain the same active continue to push for properties and there is good evidence that it ingredients as the plants, but the balance of changes in regulation can treat severe forms of childhood epilepsy. compounds depends on the specific plants the oil that enable people It does not have a psychoactive effect. CBD is has been prepared from. with MS to access the thought to modulate the effects of THC which No clinical studies have been carried out to treatments they is why the ratio of THC to CBD can be important. show whether or not the cannabis oils commercially need” What is medicinal cannabis? available in the UK have any benefits in MS. Anecdotally Medicinal cannabis refers to the use of cannabis some people with MS say they have found cannabis oils to be for medical purposes rather than for recreational use. beneficial, whilst others have seen no effect. This could cover anything from the raw herbal product through to drugs manufactured to pharmaceutical standards which have Current legal status of cannabis and been tested in clinical trials and been approved by drug regulators cannabis preparations for specific conditions. Cannabis is a controlled drug under the Misuse of Drugs Act What evidence is there for medicinal cannabis in MS? 1971. Controlled drugs are assigned a Class and a Schedule. The Studies have investigated different preparations of medicinal Class (A, B and C) broadly reflects potential for harm, and has legal cannabis in pill or spray form; these have shown that medicinal implications, including penalties for inappropriate supply and cannabis can help to treat certain MS symptoms such as spasticity possession. Cannabis and many cannabis-based products are and spasms, lessen central pain (feelings of burning, pins and assigned to Class B. The proposed changes do not affect the Class needles or numbness) and may lessen frequent urination. of cannabis. Just two small studies have looked at smoked cannabis in Recognising that potentially harmful drugs do have medical people with MS; both investigated aspects of spasticity. A review benefit in specific cases, they are also assigned to a Schedule (1of these studies concluded that they did not provide enough 5) which spells out how they can be prescribed and stored.

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Cannabis is currently assigned to Schedule 1, the most restrictive category, for drugs which are considered to have no recognised medicinal benefit. They cannot be prescribed or held legally with a prescription. Sativex is assigned to the less-restrictive Schedule 4. This means that Sativex can be prescribed in the UK with no restrictions on supply, recording, storage or destruction. The cannabinoid CBD, is not a controlled substance under the Misuse of Drugs Act. Cannabis oils containing CBD can be sold legally in the UK, providing they contain negligible amounts of THC and do not make any claims for medical benefit.

Proposed changes to legal status of cannabis In response to several high-profile cases earlier this year, the Home Secretary ordered a two part review of the scheduling of cannabis. The first part concluded that there was strong evidence of a therapeutic benefit of cannabis-based medicinal products and that medicinal cannabis should be available for prescriptions “under controlled conditions by registered practitioners”. The second part of the review was conducted by the Advisory Council on the Misuse of Drugs (ACMD). This recommended that cannabis-derived medicinal products should be placed in Schedule 2 provided that the products met safety standards, which would allow them to be legally prescribed. The review stressed that “cannabis-derived products can vary greatly in their composition, effectiveness and level of impurity. It is important that clinicians, patients and their families are confident that any prescribed medication is both safe and effective.” The review also concluded that raw cannabis and cannabis preparations of unknown composition should not be given the status of medication and that there should be no change to the legal status of cannabis for recreational use. The Home Secretary accepted these findings and pledged that the law will be changed by the autumn so that specialist clinicians will be able to legally prescribe cannabis-derived medicinal products to patients with an exceptional clinical need. What will this mean? The Home Office, Department of Health and Social Care (DHSC), the Medicines and Healthcare products Regulatory Agency (MHRA) and Advisory Council on the Misuse of Drugs (ACMD) are now developing the framework to achieve this. There are three key points in the Home Secretary’s statement: 1. Specialist clinicians Only doctors on the Specialist Register of the General Medical Council will be able to prescribe these drugs; GPs will not be able to prescribe them. 2. Cannabis-derived medicinal products One of the key issues is precisely what is meant by cannabisderived medicinal products (CDMPs). An interim definition has been drawn up which essentially says that a CDMP must contain cannabis, THC, or related chemicals and must be produced for medicinal use. This definition has been criticised for being too broad and lacking safety and quality

standards. These are cornerstones of the licensing of medicines in the UK, which guarantee that medicines do what they claim, are safe and manufactured to a high, consistent standard. Until a CDMP has gone through licensing, it will be treated as an unlicensed medicine, also known as a ‘special’. Specialist clinicians will be required to consider licensed medications first and will need to make their own judgement on medical benefits and pharmaceutical quality of unlicensed CDMPs. To support this, interim guidelines are being drawn up, to be replaced by a full guideline on cannabis-derived products for medicinal use which NICE (National Institute for Health and Care Excellence) is just beginning to develop. This is expected to be published by October 2019. The following requirements have also been set out: • CDMPs should be produced to good manufacturing practice standards • CDMPs should have a clear description of content, particularly the amounts of CBD and THC • CDMPs should not be taken by smoking 3. Exceptional clinical need This has not been qualified so it will be left to the discretion of specialist clinicians to make this judgement.

What will this mean for people with MS? In the short-term, it seems unlikely that the proposed changes to the legal status will make it easier for people with MS to access medicinal cannabis. In the longer term, it does represent an opening-up of official attitudes to cannabis as a medicine. Reassigning medicinal cannabis to Schedule 2 will make it easier to evaluate it in clinical trials. Across a wide range of health conditions, there is limited evidence on the benefits and safety of medicinal cannabis. As part of the changes to scheduling of medicinal cannabis, investigators are being encouraged to submit research proposals to gain a better picture of short and long-term safety and effectiveness. Sativex is assigned to Schedule 4, which means it can be prescribed legally, but cost-effectiveness considerations mean that it is not offered as an NHS treatment in most of the UK. Changes to the legal status of medicinal cannabis are unlikely to affect this. The MS Trust will continue to push for changes in regulation that enable people with MS to access the treatments they need. The first part More of that is to ensure that the NICE information Guideline for the management about cannabis at of MS includes equity of access mstrust.org.uk/cannabis. to existing, proven treatments You can also call our such as Sativex. In the longer Enquiry Service on term, opening the door that enables appropriate prescription 0800 032 38 39 of cannabis grown to good manufacturing practice standards can only be a good thing.

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

A S K T H E E X PERT

Spasticity and spasms Have you ever experienced muscle stiffness or a heavy feeling in your muscles which makes them difficult to move? Or perhaps one of your muscles has suddenly stiffened causing your arm or leg to kick out or jerk towards your body? These symptoms are known as spasticity and spasms – they’re a common symptom of MS and can have a big impact on your daily life. To find out how spasticity and spasms can be successfully treated and managed, we put some of your questions to physiotherapist, Katrina Buchanan.

Are there any exercises or stretches that I can do to ease spasticity in my legs?

Katrina says: The majority of individuals with spasticity and spasms report that exercises can be very helpful in relieving their symptoms. It’s really important to maintain as much muscle mobility and strength as you can and to try and maintain flexibility of muscles, joints and ligaments. Moving each joint and limb through its range of motion each day can be very helpful and also stretching specific areas of

I’ve heard other MS symptoms can trigger spasticity – why is this? Are there any other triggers I should be aware of?

Katrina says: Trigger factors are sometimes known as aggravating factors for spasticity and spasm. These include things like pain, changes in temperature, fatigue, uncomfortable clothing or illfitting splints, and bladder and bowel problems. The reason these symptoms trigger an increase in stiffness and spasms is that they 18

tightness or restricted mobility can also be useful. A physiotherapist can help to guide you with a specific programme that meets your needs and you can then hopefully fit this into your daily routine, either carrying out exercise at home or perhaps incorporating it into some fitness regimes at the gym or during a sport that you enjoy.

provide a sensory stimulus that is fed into the central nervous system. These ongoing, frequent sensory stimuli in turn leads to an output of increased muscle contraction and spasm. If we can help to reduce the trigger factors, this will help to relieve some of the symptoms of spasticity and spasm.

Stiffness in my legs seems to be worse in the morning. Is this normal and is there anything I can do?

Katrina says: Stiffness is often worse in the mornings because you’ve spent a prolonged period of time fairly inactive in bed at night. It is quite a common phenomenon that many people with MS spasticity report. Some people with spasticity find that some gentle exercise whilst still in bed can help, for example bending and straightening your legs at the hips and knees, and rotating your trunk. This can help you to get moving more easily in the morning. For people taking medication, sometimes we suggest that you take your medication as soon as you wake up. It is safe to take any of the antispasticity medications

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

on an empty stomach, so often people will keep a glass of water and their medication beside their bed and on waking they’ll take their first dose. If you then wait 10–20 minutes before getting up, it can help that initial stiffness in the morning. The only time we need to be careful with this is if there’s a situation where you use your stiffness to help you get in and out of the bed, or to help you stand. In those situations you may find it more effective to just do the exercise before getting up and then take your medication once you’re out of bed.

What drug treatments are available to help with spasticity and the pain it can cause?

Katrina says: There are several drug treatments licensed for the management of spasticity and spasm. The MS NICE guidelines recommend that the first-line treatment that we use is either baclofen or gabapentin. We would normally choose one of these drug treatments and start it on a low dose and gradually increase. The aim of the treatment is to get a balance with management of the stiffness and spasms whilst preserving and maintaining as much muscle function and mobility as possible. If these treatments aren’t helpful individually, sometimes we’ll combine them and some people get good effect from two different types of medication used at the same time. If these treatments don’t prove to be effective, the second-line treatments that we progress to are tizanidine, dantrolene or pregablin. Sometimes these treatments are not effective for managing all the

symptoms of spasticity and spasms. Katrina says: Being very vigilant In those situations we may choose to any potential trigger factors is to use botulinum toxin, better really important. Keep an eye out for known as Botox. This is an injection any potential infections, keep your which is administered into a muscle bladder and bowel well managed if which is stiff and is usually used for you can (with use of medication to focal or specific areas of muscle ease constipation if necessary) and stiffness, for example a hand, a foot make sure any infections are treated or a toe. Following the injections, a promptly. Watch out for any areas of physiotherapist will suggest exercises sore skin, pressure ulcers and keep and stretches in order to maximise your nails well-trimmed to avoid any the effect of the treatment. ingrowing toenails. This will all help There may be some people who with the management of spasticity and find, despite the use of medications, spasms. that spasticity and spasms continue Regular movement is also really to be very problematic for beneficial as we often stiffen up when them. In those situations we stay still for a period of time. If For more we may consider more you can, try and incorporate some information on invasive treatments movement, whether it be by spasticity and spasms, such as intrathecal yourself or assisted by someone visit our website at baclofen or intrathecal else, regularly during the day and mstrust.org.uk/spasticity phenol which are given by changing your position at night into the space and fluid when you’re in bed. around the spinal cord. A good posture is really important

Do you have any tips for people whose spasticity is affecting their sleep?

Katrina says: It’s quite common for people to report an increase in stiffness and spasms overnight. There are several things you can try if spasticity and spasms are affecting your sleep. • It’s really important to have a comfortable sleeping position and it may be worth looking at your mattress and thinking about whether it’s comfortable, how long you’ve had it for and whether a different mattress or bed may be better for you. If you’re comfortable in bed, you’re less likely to trigger the spasticity and spasm. • If the spasms want to stretch out your legs in extension, sometimes resting with your legs in a degree

Is there anything I can do myself to help with spasticity?

of bend – for example, with a pillow or t-cushion under your knees or, if you have a profiling bed, using the profiling mechanism – may be helpful in reducing the number of spasms. • If you have spasms that pull your legs up towards your body, you may find that lying on your side, keeping one leg straight and one leg bent, is helpful in reducing those spasms. • If you take medication to help stiffness and spasms at night, it may be helpful to think about the timing of your medication. Think about taking it about 30 minutes before you go to sleep so by the time you’re ready to sleep, it’s having its greatest effect.

and being comfortable in the position that you are either sitting or lying in. An occupational therapist or physiotherapist can help review how you’re sitting or lying – perhaps in your office chair, a wheelchair or in your armchair at home – and help to improve and then maintain your posture and thereby reduce the likelihood of fatigue, pain or discomfort, and the onset of spasticity and spasm.

Katrina Buchanan is a consultant physiotherapist at the National Hospital for Neurology and Neurosurgery, London, where she works within the Spasticity Management Service.

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

G E T I N VO LV E D

It’s beginning to look a lot like Christmas 25 years ago, the MS Trust was founded on Christmas card sales and they still play a crucial role today in enabling us to support everyone affected by MS. “Deck the halls with boughs of holly (tra la la la la, la la la la)”. MS Trust supporter Sue Green, The countdown to Christmas has well and truly begun, but did whose sister-in-law had MS, runs you know that the MS Trust has a rather special connection to a Christmas card shop in Ealing Christmas? and has raised over £25,000 for In 1993, MS Trust co-founders Chris Jones and Jill Holt the MS Trust in the last 25 years. thought that the profits from Christmas card sales could be “The Ealing Charity Christmas put to good use producing Card Shop was set up in 1985 positive, practical and reliable by myself and a friend, to sell information for people living charity Christmas Cards locally. with MS. Our aim was to be able to give So, armed with little more 100% of the money we took than a couple of cardboard back to the charities. Due to the boxes, a photocopier and a generosity firstly of the local whole lot of passion, they YMCA and latterly of a set up a small local church, charitable trust: plus the 70 or The MS Trust. so volunteers who get involved each year we “It’s part of my From those have managed to achieve this. build up to Christmas; very small “The shop is open six days a week in the it’s the thing beginnings, that makes me feel like run up to Christmas and stocks cards from the charity has continued to grow and thrive, about 30 charities. We have been selling Christmas is coming!” and a quarter of a century later, we still have the cards for the MS Trust for the last 25 years, same passionate determination to ensure nobody usually raising between £1,500 and £2,000 for with MS has to deal with it alone. the charity each year.” Christmas cards still play a crucial role today Claire Gambrell, fundraising officer at the in enabling us to carry out our vital work. Our cards are sold in MS Trust, helps to pick the card designs each year, and believes over 300 Cards for Good Causes shops across the country, and the 2018 selection offers a little something for everyone. “From every year Christmas card sales raise nearly £160,000 towards festive dogs (see picture below) and cute robins to moonlit dear our work supporting everyone affected by MS, as well as lots of and snow-covered London streets, this year’s selection of awareness. Christmas cards is, I think, one of Many MS Trust supporters volunteer in the Cards for Good our best yet!” Causes shops, enjoying the opportunity to meet new people, So what are you waiting for? spread a little festive cheer and make a difference for people Our cards are selling fast, so with MS. “Spending some time volunteering in the shop, it’s part stock up on your favourites at of my build up to Christmas. It’s the thing that makes me feel mstrust.org.uk/Christmas that Christmas is coming,” says volunteer Liz. “Like many people or at your local Cards for with MS, I don’t go out shopping that often because I can find it Good Causes shop, and raise really disorientating. Particularly when it’s busy at Christmas: it’s awareness of MS and the MS just too much. Trust with every single card you “So to have the experience of being in the card shop, that’s send. my Christmas experience of shopping. It’s just lovely.” Ho, ho, ho!

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

The Freedom Trail

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 Santa Run, London Join us for a festive family day out in Victoria Park on Sunday 2 December. You can run, jog, walk or wheel the 5K or 10K route and you can even bring the dog. mstrust.org.uk/santarun

Miles for MS

As we celebrate our 25 years of history, what better time to take on a brand new fundraising challenge with real historical significance? Our Freedom Trail, which takes place next July, is a four day mountain trek across the Pyrenees from France to Spain. This stunning but demanding trek follows the route of the ‘Chemin de la Liberté’. Follow in the footsteps of the many allied servicemen and Jewish refugees escaping Nazi occupied France during WWII and see memorials to some of the local people who risked their lives to help them. This trek is challenging and steep, the hardest day sees you ascend 1500m. The route provides some spectacular mountain scenery, through beech forests, past mountain lakes and along rocky ridges. You explore remote trails ascending to 2522m before descending into Spain. It costs £295 to register and you will be required to raise a minimum of £2,010 in sponsorship for the MS Trust (which includes the trek costs). We will provide you with lots of advice and support to help you reach your sponsorship target and you will be helping us to ensure that no one has to manage MS alone. This truly is an inspirational trek offering an insight into the hardships endured and bravery of all those who escaped, those who helped and those who sadly did not make it to safety during the war.

Don’t miss this once-in-a-lifetime opportunity If you, a friend or family member are interested in taking part in this amazing trek, please visit mstrust.org.uk/freedom or contact Claire in our fundraising team.

Set your own distance challenge to complete during May, track your progress and raise vital funds. You could walk, wheel, arm cycle, swim, row… Pick how far you want to go and do it your way! mstrust.org.uk/ miles

RideLondon-Surrey 100 We are looking for keen cyclists who are up for a challenge to join team MS Trust and tackle this fantastic 100-mile ride on closed roads in August 2019. mstrust.org.uk/ridelondon

2019 running events Join our team for the British 10K London Run in July or the Great North Run in September. Visit our website to find out more about these fantastic events. mstrust.org.uk/running

The Big Half, London Join us at this exciting half marathon on 10 March 2019 and run part of the iconic London Marathon course. Celebrate at the finish with The Big Festival in Greenwich Park. mstrust.org.uk/bighalf

Mission 100 100 people are diagnosed with MS each week and we are setting you the challenge to raise £100 to enable the MS Trust to continue to provide information and support to each and every one of them. How could you raise £100? Contact the fundraising team on fundraising@mstrust.org.uk to find out more.

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising

Open Door November 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

1 5 M IN U T E S WITH Radio 1 DJ

Scott Mills Radio 1 DJ Scott Mills, whose mum has MS, recently presented our BBC Lifeline Appeal. Here he tells us how his family have adapted to his mum’s MS diagnosis, the importance of speaking out about MS, and why his mum is his biggest inspiration.

How did you feel when your mum was diagnosed with MS? I knew very little about MS at the time. I’d heard of it but I’d never been directly affected by it, which I think is true of a lot of people and why awareness is so important. My mum felt like something wasn’t right for a long time. I remember us going for a walk and thinking she is far more exhausted than she should be and it just became apparent something wasn’t quite right. In a weird, strange way, when she was actually diagnosed with MS, we were kind of relieved, because we knew what it was, we had a name for it so we could deal with it. How has your family adapted to your mum’s diagnosis? It’s our new normal and we know that we really have to plan things. For example, I’m running the Cardiff Half soon and mum’s coming to support me, and planning it is like a military operation. With most people you could be like, hey mum, hey dad, I’ll meet you at the office at 3pm on Friday. Not that simple. I have to think about her mobility and how she is going to get from Waterloo station to the car. Will the car be close enough? Does the driver know she has MS? Where will she wait at Radio 1? Will she be able to manage the walk? It’s things like that. You’ve really got to plan it. Mum has primary progressive MS, which does get worse, and sometimes you don’t realise how much worse it’s got. Six or seven years ago she might have been able to manage, but it just wouldn’t happen now. With travelling in particular, it’s so important to make sure you are prepared. Do you think your mum’s diagnosis has changed your outlook on life? It’s made me realise that you never know what’s going to happen so you have to take each day as it comes. It’s also made me realise how lucky I am to have a body that works. I’ve been at the gym recently, and have lost quite a lot of weight, and mum is following my progress and wishes she could do the same. Her mind is willing, but her body just isn’t able. In her head, she thinks she can still run down the street.

Tell us why you wanted to get involved in the MS Trust’s BBC Lifeline appeal? I didn’t even think twice about saying yes. I try and do what I can to raise awareness of MS, so when it’s on a major platform like BBC One, it’s always a great opportunity. If you see someone in the public eye, directly affected by it and talking about it on television, it really can have an impact and make people think more about it. If you’re in a position where you can speak to a lot of people, whether that’s on TV or radio, if it’s something that’s close to your heart and affects you, I don’t see why you wouldn’t do that. I got so many nice messages afterwards, hundreds of people who have MS themselves or who have a family member with it, and MS nurses too, saying what a great piece of awareness it was and how thankful they were for the appeal. What would be your advice to other families facing a similar situation? The thing my mum is really good at, and she’s aware in her head that it’s getting worse, but generally she remains very positive and we often laugh about it. It’s a horrible condition, but you can’t let it govern your mind. My mum’s a trooper, so she won’t always say anything but I know there are times when she gets so frustrated by it, because she can’t understand why she can’t stand up and do the washing up for 10 minutes. Something that is so simple. But one thing that has helped in the last few months is cycling. She can’t walk like she used to, but the weird and great thing is she can get on a bicycle and go for ages. It feels like she’s got that freedom back. She sent me pictures and she’s having a whale of time! She’s so often cooped up in the house, but the Find out more about idea she can wizz along on a bike is really cool. Who is your biggest inspiration and why? My mum, without question. She faces MS everyday, always with a smile on her face. She’s been through a lot but she is my best friend and she is always there for me.

Open Door November 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

our BBC Lifeline Appeal at mstrust.org.uk/bbclifeline-appeal

Have some festive fun with our Christmas quiz For other ways you can get involved this festive season, visit mstrust.org.uk/festivefundraising

aise r u y yo e n o ga n m i k e Th ma e b l for e wil c ren th e i f f w i d ing v i l ple peo S today M

Name th at song! "hurry do wn the chim ney tonight"

On t he of C 9th da y hr wha istmas t true did my love to m send e?

Call 01462 476707 or email fundraising@mstrust.org.uk to request your Christmas Quiz Pack www.mstrust.org.uk/festivefundraising

Feeling

ut M o b a d e s u conf

MSTV is here to help

MS can be really tricky to get your head around. MSTV, the MS Trust’s YouTube channel for young people affected by MS, can help you make sense of it. It features videos on a whole range of topics, everything from managing symptoms and taking care of your mental health, to talking to your friends about MS. Subscribe today at: youtube.com/mstvuk Order MS Trust publications Our recently updated publications are listed below. You can find our full list of publications at: mstrust.org.uk/shop Managing your bladder (MS-429) Managing your bowels (MS-430) Sex and MS: Men (MS-356)

Sex and MS: Women (MS-213)

The kids’ guide to MS (MS-286) Primary progressive MS (MS-352) Secondary progressive MS (MS-458) Disease Modifying Drugs (MS-90)

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