Open Door February 2019 by MS Trust

Open Door Quarterly newsletter of the MS Trust

February 2019

“MS has made me look at my life and think about what’s important” BBC journalist Caroline Wyatt Picture credit: Chris Booth

15 minutes with Sportswoman of the Year Trish Deykin

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MS and mental health: It’s good to talk

Ask the expert: Managing pain

Staying active: Top tips to get you exercising

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Welcome to the February issue of Open Door Hello and welcome to the first Open Door of 2019. Inside you’ll find a compelling interview with BBC journalist Caroline Wyatt (page 12). Caroline is one very inspiring lady, and we’d like to thank her for talking so honestly to us about her journey with MS. I’m sure there’s something in her interview that everybody with MS can relate to. There are more inspiring stories in this issue courtesy of our supporters Trish Deykin (page 22) and Spencer Bull (page 10), who have both acomplished some incredible feats in sport. If their words encourage you to dust off your trainers and introduce a little activity

into your life, we have some top tips to help you get started with exercise on page 14. Elsewhere in this issue, nurse consultant Sue Barnes answers your questions on managing pain in MS (page 18); we look at some of the talking If you’d like therapies that can help you deal with to donate £1 to the mental challenges MS can bring cover the costs of Open (page 16); and we round up the latest Door, please text OPEN25 research going on in the world of MS to 70201 (page 7). We really hope you like the new (Fundraising, payments and donations will be processed and administered by the National issue and if you have any feedback Funding Scheme (Charity No: 1149800), or suggestions for future content, do operating as DONATE. Texts will be charged at your standard network rate. get in touch at For Terms & Conditions, see opendoor@mstrust.org.uk. www.easydonate.org) David Martin, Chief Executive, MS Trust

How we’ve been working hard for people with MS since our last issue Keeping you informed on the latest MS news and research In the last Open Door, we published our ‘potted guide’ to medicinal cannabis. Since then, we’ve been keeping a keen eye on what’s happening, and will continue to cut through the media hype to present the facts and what they could mean for you. We’ve also responded to NICE’s draft guidelines on cannabis-based medicinal products (due to be released in October 2019), raising concerns around access to existing treatments such as Sativex, the definition of cannabis-based medicinal products being covered in the guidelines, and the potential benefits for managing multiple symptoms. Sign up to the MS Trust’s weekly News Alert at mstrust.org.uk/keepintouch for all the latest MS news.

Answering your questions about MS 2018 was the busiest year ever for our Enquiry Service. They answered over 3,000 of your questions, on a whole range of topics. So if you’ve got a question about MS, no matter how big or small, don’t hesitate to get in touch with our friendly and knowledgeable team. You can give them a call on 0800 032 38 39 or email infoteam@mstrust.org.uk. The Enquiry Service opening hours are Monday to Friday, 9am5pm. We answered

3,000 Multiple Sclerosis Trust, Spirella Building,

of your questions

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 February 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

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What’s inside? 4

News Report highlights gaps in MS services, results of stem cell study and launch of neurological care pathway

Research update New research on abdominal massage and constipation, motor imagery, and the Epstein-Barr virus

Selling Christmas cards Christmas card sales are a vital source of income and awareness for the MS Trust and so we would like to say a big thank you to everybody who sent MS Trust cards over the festive period, and to all the amazing supporters who volunteered at local Christmas card shops. It was a bumper year for Christmas card sales through our brochure and the money raised will make such a difference to people with MS.

Spencer Bull talks MS, the Invictus Games and taking back control

Advanced MS Champion We catch up with Lindsay Lord, our first ever Advanced MS Champion, to hear about her new role

Funding more MS specialist nurses The MS Trust conducts regular research into nursing levels across the UK and has found around 77% of people with MS in the UK live in areas where there aren’t enough MS nurses (see full report on page 4). Through our Specialist Nurse Programme, we’re determined to change that. As reported in our last issue, we’ve already helped to bring more MS nurses to Leicester, Lanarkshire, Bradford, South Tees, Lothian, Hull, North Lincs and Goole, and we are now thrilled to announce we’re funding a new MS nurse in Coventry. Thank you to you, our amazing supporters, who have helped make this happen. Find out more at mstrust.org.uk/nurses.

Spencer’s story

Caroline’s story BBC journalist Caroline Wyatt opens up about living and working with MS

14 Staying active

77%

of people live in areas where there aren’t enough MS nurses

Providing you with information you know you can trust In today’s ‘Google it’ world, you have a wealth of information at your fingertips, but it’s not always information you can trust. Here at the MS Trust, we pride ourselves on providing people with MS practical, evidencebased information that is clear and helpful. We are accredited by the Information Standard, so when you pick up one of our booklets or consult our website, you can be sure it’s information you can trust. Visit mstrust.org.uk to find out more.

Want to get fit but not sure how to get started? We have some top tips to help you

MS and mental health: It’s good to talk How talking therapies can help people deal with the mental challenges MS can bring

Ask the expert: Managing pain Consultant nurse Sue Barnes answers your questions on managing pain in MS

Get involved The MS Trust’s new fundraising mission, an epic cycling challenge and how you can join our London to Brighton team

15 minutes with Trish Deykin We chat to our supporter and triathlete Trish Deykin about being awarded The Times Helen Rollason Award for Inspiration

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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

News New MS Trust report highlights gaps in MS services For many, MS nurses are a lifeline but, sadly, we know that some people are missing out on the vital care and support they provide, simply because there are currently not enough of them. The MS Trust recently published a report into nurse provision across the UK. Here we look at some of the key findings. At the MS Trust we believe that everyone with MS should have access to an MS specialist nurse. MS nurses are vital for people living with MS. They can help them adjust to diagnosis, consider complicated treatment options, manage a wide range of symptoms and learn to live well with an unpredictable, lifelong condition. MS nurses are a lifeline but, sadly, some people are missing out on the vital care and support they provide, simply because there are currently not enough of them. A new report recently published by the MS Trust has found that up to 105 new MS nurses are required to ensure everyone in the UK can access the specialist support they need and deserve. Although the research shows that there has been a welcome increase in the number of whole time equivalent MS nurses over the past two years (up to 250 from 241), up to 77% of people with MS are living in areas where MS nurses have caseloads in excess of a new sustainable caseload figure of 315. Of those people, nearly a quarter (26,000) live in areas where caseloads are twice the recommended level. The previous recommended caseload figure for MS specialist nurses was 358. Independent research commissioned by the MS Trust and conducted by Professor Alison Leary has found that as MS services and the demands on MS nurses have changed, this number is no longer 4

sustainable. Many MS nurses do a fantastic job, going above and beyond what is required of them. But as they become more and more stretched, increasingly nurses are finding they don’t have the time to focus on some aspects of care, things like psychological care, symptom management and disease modifying drug

“The increasing complexity of the role and the additional tasks MS nurses are expected to take on, means that even more nurses are needed” (DMD) management. The report recommends a caseload figure of 315 patients per MS nurse to ensure people with MS are not missing out on support. Jo Sopala, Director of Health Professional Programmes at the MS Trust, says: “The landscape has changed significantly since our last MS Nurse mapping exercise in 2016. We now have more DMDs being made available, more requirements for complex monitoring and many MS nurses carrying out nonspecialist work. Whilst we welcome the

increase in the number of nurses shown in the 2018 census, the increasing complexity of the role and the additional tasks MS specialist nurses are expected to take on, mean that even more MS nurses are needed. As a consequence of this, the number of people with MS living in areas that don’t have enough MS nurses is growing.” So, what is the MS Trust doing about it? We believe that nobody should have to manage MS alone, so through our pioneering Specialist Nurse Programme we are funding MS nurses in the areas of greatest need. We have already funded new MS nurses in Leicester, Lanarkshire, Bradford, South Tees, Lothian, Hull, North Lincs and Goole, and soon Coventry. We also provide training to all MS nurses in the UK, ensuring they have the skills and knowledge to provide the best possible support to you. We know there’s a long way to go to achieve our goal. But, with your support, we will keep fighting to ensure everyone with MS has access to You can read the full specialist nurse report at support.

mstrust.org.uk/projects.

Open Door February 2019 Office number: 01462 476700 mstrust.org.uk info mstrust.org.uk

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MS Trust joins forces with neurological charities to launch RightCare Pathway A coalition of charities, including the MS Trust, has joined forces with NHS England to produce a new NHS RightCare Pathway for progressive neurological conditions. The Pathway, which is due to be launched soon, will offer local NHS commissioners practical solutions and resources to help combat inequality and ensure everybody living with neurological conditions gets the support they deserve. For MS, this means improving the efficiency of DMD management, employing data and technology to free up the valuable time of MS specialists, ensuring people with progressive MS are not becoming disconnected from MS services, and tackling the high caseloads of MS nurses. According to the NHS & Care Quality Commission 2017 Adult Inpatient Survey, people with neurological conditions reported poorer experiences of care, as well as lower confidence and trust in the services to treat their neurological condition. The MS Trust’s coalition charity partners are MS Society, Parkinson’s UK, Sue Ryder, MND Association, MSA Trust and PSP Association.

Supporters launch ‘odd sox’ range to raise money for MS

Stem cell trial results Stem cell therapy was more effective than disease modifying drugs (DMDs) at slowing progression in people with highly active relapsing MS according to a recently published study. 110 people who had two or more relapses in the previous year whilst taking a DMD received either stem cell therapy (AHSCT) or took a stronger DMD than they had previously taken. After one year, progression occurred in three people in the AHSCT group and 34 in the DMD group. EDSS scores improved by a little over one point in the AHSCT group and worsened by 0.67 in the DMD group. Progression increased over time, but fewer progressed in the AHSCT group than in the DMD group. The investigators acknowledge the small number of participants and the fact that some of the more effective DMDs were not offered to the DMD group. Find out more about this study at mstrust.org.uk/news.

Tell us your views about Open Door Husband and wife James and Lianne have launched a new range of socks to raise awareness and funds for multiple sclerosis. Mr Monkey Sox was inspired by James’ MS diagnosis in 2016. “Mr Monkey Sox, like James, has MS,” they explain. “His nerves are damaged, so messages get ‘crossed’. His body acts and feels different from left to right, like wearing ‘odd sox’.” The socks come in a range of fun designs and colours and 50% of net profits will go directly to MS charities, including the MS Trust. “Living with MS has changed both of our lives but with the help of Mr Monkey Sox we feel more in control, positive and supported. Being newly diagnosed and living with MS has its challenges. We aim to unite and support as many people living with and affected by MS as possible.” Find out more at mrmonkeysox.com and follow @mrmonkeysox on Instagram.

We know our readers look forward to receiving Open Door each quarter and reading about what’s happening in the MS community. But we want to make sure we continue to deliver the articles you’re looking for. We’d be really grateful if you could spare five minutes to complete our survey and tell us a little more about what you’d like to see more or less of in your magazine. Please visit surveymonkey.co.uk/r/mstrustod or email opendoor@mstrust.org.uk if you’d like a printed survey.

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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NEWS IN PICTURES

On your marks, get set. . . GO! We were thrilled to ‘takeover’ the Letchworth parkrun back in December. Hundreds of runners braved the cold, wind and mud to take part in the event and raise awareness of MS and the work of the MS Trust. The sea of blue on a bright and breezy Saturday morning was a sight to behold! Thank you to all the runners and volunteers who got involved.

Well done Jim! Our supporter Jim Thompson raised an incredible £11,147.92 on his latest fundraising challenge. Jim and his wife Anne have organised many fundraising events over the years for the MS Trust, but this one was Jim’s biggest yet! Over 105 days, he walked nearly 1,400 miles from Lizard Point, the most southerly place in mainland Britain to the most northerly point at Dunnet Head. Everyone here at the MS Trust would like to send Jim a massive congratulations on completing his amazing trek!

Invaluable support It was brilliant to see so many MS nurses, therapists and neurologists at our annual Conference back in November. Now in its 22nd year, it’s the biggest conference for MS health professionals in the UK and features talks, seminars and workshops on everything from exercising with MS to the latest MS drug trials. The passion to make a difference for people living with MS was amazing to see.

Superstar fundraiser 15-year-old Joey Rapley took on an epic challenge for the MS Trust back in December, running 100km over 10 days. What a superstar! The inspiration behind the challenge was Joey’s mum Vicky, who was diagnosed with MS 10 years ago. A big well done to Joey, who so far has raised over £5,000 to help us support people living with MS today.

Go Jack! We’d like to say a big thank you to another superstar supporter, Jack McCauley. Jack has now raised over £1,000 for the MS Trust through collections around County Armagh, Northern Ireland. Amazing work, Jack!

Open Door February 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

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

Research update

Can abdominal massage help with constipation? roun a f of a peop e it e perience bo e prob ems at some time. common prob em is constipation e ne as passing ar stoo s poo or faeces fe er t an t ree times a eek. variety of treatment options inc u ing c anges to iet an e ercise can make a rea i erence. e aim of t is stu y as to eva uate t e e ect of ab omina massage as a treatment for constipation. Authors c urg D et a Title b omina massage p us a vice compare it a vice on y for neurogenic bo e ysfunction in : a Journal ea t ec no ogy ssessment 2018 Oct 22 8 :1 13 Read the summary ttps: tinyur .com y 9b q2

The study 191 participants who felt their constipation was “bothersome” were recruited at 12 MS centres around the UK. Participants were assigned to one of two groups: • advice to optimise bowel care • advice to optimise bowel care plus abdominal massage. Those in the abdominal massage group and/or their carer were taught how to do the abdominal massage and given a DVD and instruction book (find this on our website). A daily massage of 10 minutes duration was recommended. All participants had a weekly phone call from a health professional to check on progress and any changes or difficulties in their bowel management. Participants completed questionnaires at the start of the study, at the end of six weeks of intervention and again at 24 weeks and kept a bowel diary for the duration of the study. To further assess the treatment, 20 participants had telephone interviews at the beginning and end of the trial.

The results At the end of the study, the abdominal

massage group recorded a slight, but not statistically significant, improvement in the Neurogenic Bowel Dysfunction Score, a questionnaire which measures overall bowel symptoms. However, at the end of the study, participants in the abdominal massage group did record some important findings. They: • passed stools more frequently • felt that they emptied their bowel more completely • generally took fewer laxatives • felt better. Interviews also identified that participants liked the fact that: • drugs were not involved • they could do the massage themselves • there was a lack of side effects.

What does it mean? The study found that abdominal massage lead to an improvement in bowel symptoms, but it was small and not statistically significant. The researchers conclude that while the results do not justify routine use of abdominal massage for everyone reporting constipation, they do indicate that this approach would be worth considering as an additional option to help people manage this issue.

More about managing constipation Constipation is a common problem for people with MS. The good news is that there are lots of ways to reduce constipation, though it may take some experimenting to find what works for you. Some self-management tips include: • eating regularly • getting enough fibre • drinking enough fluids • exercising regularly • posture when sitting on the toilet • giving it time • reviewing medicines • and of course, abdominal massage (find out more on the study website: https://tinyurl.com/y9xfqd2w). There is also a wide range of treatment options such as laxatives, stimulants and enemas. Health professionals can For more work with you to information find the ones visit that are right for mstrust.org.uk/a-z/ you.

constipation

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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R E S E A RC H UPDATE

Does walking improve with visualisation? otor imagery is a tec nique ere you visua ise yourse f oing an activity it out actua y moving. is tec nique is use by at etes to improve t eir performance an a so by p ysiot erapists to e p peop e regain movements. Authors eebac er et a Title E ects an mec anisms of i erent y cue an non cue motor imagery in peop e it mu tip e sc erosis: ran omise contro e tria Journal u t c er. 2018 ug 1 . Epub a ea of print Read the summary ttps: tinyur .com y 22css

The study

were videoed walking in time to fast and slow paced music to test their ability to synchronise movements with music.

60 people with MS with mild to moderate levels of disability (EDSS 1.5 – 4.5) were recruited from an MS clinic in Austria. The results They were assigned to three different All of the groups had significant groups: improvements in walking speed and • MVMI - music and verbally cued walking distance, with the biggest MI – given CDs that contained verbal improvements seen in the MVMI group. instructions to imagine walking tasks, Fatigue and quality of life improved together with instrumental music significantly using cued MI, with For more and, in time with the music, the greatest changes seen information simple instructions such as after MVMI. Both types of “stamp-stamp” or “large visit cued MI also resulted in step” mstrust.org. better synchronization of • MMI - music cued MI walking to fast and slow uk/a-z/walkinggiven CDs that contained music with more uniform step difficulties verbal instructions to imagine length and timing. walking tasks, together with What does it mean? instrumental music Mentally rehearsing walking improves • MI - MI alone - given CDs that contained actual walking and this effect is enhanced verbal instructions to imagine walking when you imagine walking while listening tasks to rhythmic music with additional verbal Participants were given training and cues. then asked to use the CDs to practise MI The researchers acknowledge that at home while sitting down for 17 minutes the study only collected data before a day, six times per week for four weeks. and after the four weeks of practising The main measures were walking speed motor imagery; there was no follow-up (timed 25 foot walk) and walking distance data. This means that it is not possible (six minute walk test) before and after the to tell whether a single four week course four weeks of treatment. Participants also of motor imagery would have a long completed questionnaires to assess their lasting effect or whether you would fatigue levels and quality of life before need to practise regularly to maintain and after treatment. Finally, participants improvements.

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More about walking difficulties Many people with MS have some difficulties with walking. Common difficulties are: • unsteadiness on walking or turning • slower, shorter steps • less confidence • needing support from walls, furniture or other people • tripping and stumbling • a heavy feeling in the legs when stepping forward • weakness of the leg when weight is on it • difficulty placing the foot on ground. A symptom called foot drop can be experienced by some people with MS. In MS, many of these problems are initially caused by the slowed or altered nerve conduction, which results in muscle weakness, spasm or spasticity (muscle stiffness) and sensory changes. However, other MS symptoms can have a large impact on walking, such as difficulties with balance, pain, tremor, dizziness and visual problems. The best way forward depends on what is causing the walking difficulties. A health professional can advise. Treatment may involve physiotherapy or drug treatments to alleviate specific underlying symptoms such as spasticity.

00 mstrust.org.uk info@mstrust.org.uk

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RESEA RC H U P DAT E

Cell therapy targeting Epstein-Barr virus tested in progressive MS One person experienced a temporary alteration in their sense of taste, thought to be due to one of the chemicals used in the preparation of the cells. Seven of the 10 participants either reported or showed measureable improvements in symptoms starting two to 14 weeks after the first infusion, accompanied by a reduction in EDSS score in three participants. Improvement occurred in people with primary as well as secondary progressive MS. Fatigue improved significantly for Authors Pender MP, et al the whole group over the 27 week Title Epstein-Barr virus-specific T cell therapy for progressive multiple sclerosis. period, particularly for five of the seven Journal Journal of Clinical Investigation Insight 2018;3(22). Pii: 124714 participants who showed improvements. Read the summary https://tinyurl.com/yc4um3xk Thinking and memory skills were unchanged over the period of the study. The Epstein-Barr virus (EBV) is a very in secondary and primary progressive MS. The researchers found participants common virus infecting 90-95% of whose T cells showed a stronger ability The study the general population. Most people to attack EBV-infected cells were more Australian researchers recruited five won’t know they have been infected likely to improve with the treatment than people with secondary and five as symptoms are generally very mild, those whose T cells showed a weaker with primary progressive Find out although in some teenagers it causes response. MS. Participants had more about glandular fever. EBV infects a subset of been diagnosed with What does it mean? the drugs in white blood cells in the immune system MS for between three The results showed that the development at called B cells. The infected cells are usually and 25 years and all had technology was capable of mstrust.org.uk/ kept under control by another type of experienced disability growing T cells primed to kill EBVdrugsindev white blood cell called killer T cells which progression for at least infected cells and that the therapy kill virus-infected cells. two years, with EDSS was safe and well-tolerated. Research suggests that infection with scores of 5.0 to 8.0. This was a very small trial and EBV has a role in the development and Blood was taken from each person and participants were followed for just 27 subsequent progression of MS. It is treated in the laboratory to stimulate weeks, so it’s too early to draw firm thought that a number of factors combine the formation of T cells primed to kill conclusions from the results. The to weaken the T cell control of EBVEBV-infected B cells. The stimulated T improvements seen in this study infected cells. This could lead to a buildcells were then given back to participants are encouraging but will need to be up of EBV-infected B cells in the brain in four infusions, two weeks apart, with confirmed in larger studies which compare and spinal cord and trigger the abnormal the dose increasing each time. Each the cell-based therapy with a dummy, immune attack which causes damage to participant was monitored for 27 weeks or control, group. The biotechnology the myelin coating of nerve cells. with a range of tests including changes in company which collaborated in this study If this is the case, then treatments which EDSS, fatigue, quality of life and thinking plans to carry out a randomised controlled target EBV might be able to prevent MS and memory skills. trial of this treatment and is also testing from getting worse. In the first study of an ‘off-the-shelf’ version, which uses The results its kind, Australian researchers tested the immune cells from donors, in progressive First and foremost, the treatment was feasibility and safety of a new cell-based and relapsing MS. well tolerated with no serious side effects. therapy which targets EBV-infected cells pen oor e ruary 201

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En uiry service: 0800 032 383

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22/01/2019 11:53:16

MY M S S TORY

“I’m determining my future, not MS” Spencer Bull as t e vice captain of t e squa at ast year s nvictus ames. ere t e ritis rmy ieutenant o one ta ks to us about taking back contro fo o ing an iagnosis. “I didn’t know much about MS when I was diagnosed in 2005 and I still feel emotional thinking back to that moment. I was serving in the army at the time and was posted in Kuwait. I was doing a lot of sporting stuff and after one rugby match I started getting pins and needles in my fingers and extremities. I convinced myself that I’d just trapped a nerve somewhere. In 2005, I came back to the UK and it came back again. So I decided to get it properly looked at. Next thing I knew I was in a cycle of seeing various doctors. I should have recognised what was happening when I was having MRI scans and lumbar punctures, but I didn’t and in my mind I was still thinking it was some form of spinal injury. When a neurospecialist said ‘you have MS’, I felt angry. I’m a soldier, I’m fit and healthy. What are you telling me? I was in a bad place. I’d heard of it but didn’t know what it meant. I wasn’t really listening, as all that’s going through my mind is what is this going to mean? Will I have to leave the army? What about my family? If you’re in the military and facing a medical discharge, you’re not just losing a job, you are also losing a support network and a house. So suddenly you have many things to start thinking about. I wasn’t an easy person to be around. I was trying to deal with it but I didn’t want to talk about it. I made life hard for the people I was trying to protect. They were dancing on eggshells around me, because I didn’t want to talk about it. It took me five years to come to terms with the diagnosis. It takes times to go through it and you have to wrestle with it for a long time.

I found support through an MS charity for the armed forces (Mutual Support). Speaking to people there helped a lot. I realised I had to change; I had to address it. I was hiding it from a lot of people at first, but then there was a moment. I was on a course with work and there was a group photo. I was positioned right at the back, in the middle at the top. The photo was taken and I thought, how am I going to get down? I tried to get down the benches and

“Everyone has ‘something’ and that’s the thing that helps you move forward”

scared myself senseless and I just thought, I’ve got to do something about this. That was the trigger. At that point I was starting to take control back. I’m in charge; I’m determining my future not the MS. My motto is live for the day, plan for the future. It was my decision to start using a wheelchair. Using a wheelchair has given me independence. Yes it’s a pain, but it means I can go into a room, I can move around, I can engage. It took me a while to be seen in public in it, but once I’d accepted it, it has made such a difference. I’ve always loved sport and I was getting really fed up sat on the side-lines watching the kids play but not doing anything myself. So through Help for Heroes’ Sport Recovery sessions, I started reengaging

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with sports I’d previously done, but in an adaptive way. I was medically discharged from the army in December 2017, so I decided to trial for the Invictus Games last year. I focused on sports I could do with my kids, so I trialled in swimming, sailing, cycling, and seated shotput. I did the trials and didn’t think I would be chosen, but was told I’d been selected and they also wanted me to interview for a captain role. I got selected as vice-captain and I felt honoured, privileged and chuffed to bits. It’s just amazing to be on this adventure. I’m hoping to show that everyone has ‘something’, and that’s the thing that helps you move forward. Mine is sport, for someone else it could be art, or music, it could be whatever. My message to anyone would be try and work out what ‘it’ is we’ve all got ‘it’, it’s just finding ‘it’. And when you have found ‘it’, you’ll look back and go, that’s great. Give it a go! It gives you - in the words of Star Wars - hope and we all need hope.”

ea more stories about ife it at mstrust.org.uk/yourstories.

00 mstrust.org.uk info@mstrust.org.uk

17/01/2019 11:39:37

A DVA N C E D M S

“I will do my very best for you” In the last issue of Open Door, we were thrilled to announce the appointment of our first ever Advanced MS Champion, Lindsay Lord (pictured right), based at Salford Royal NHS Foundation Trust and covering Greater Manchester. Here, we talk to Lindsay about the vital importance of this new role and her determination to make a difference for people with advanced MS. Hi Lindsay, so how have you found the first few months in post? Exciting yet challenging. As this is a new post and being the first person in the role I don’t have the benefit of hindsight. The biggest challenge has been where to begin, as the Greater Manchester neurology team cover such a huge geographical area, all with varying levels of services available to people. How long have you worked with people with MS and what was it that made you want to take on this new role? I have been an MS nurse for nine years and have learnt so much during that time. But because of increasing time constraints due to changes in the service, MS nurses in recent years have all seen a change in our job, taking us away from providing care and developing services and education for people who have complex symptoms and who struggle to get to clinics. This role will help me to deliver the care and support

people with advanced MS so desperately need. What do you love most about your new role? Seeing the benefit that people get from my input, which hopefully enables them to have a better quality of life and to feel empowered to manage their own health. I would like to thank the people with MS who I work with who have been full of encouragement and support and to say that I will do my very best for you all. What are the biggest challenges people with advanced MS face? I see people who are unaware of the services available to them and receiving a reactive approach to their health rather than proactive. How will this role make a difference? It is still early days, but from the individuals and their families’ point of view, they can see that they matter, that even small

changes can make a difference, that we have not given up on them and they should not give up on themselves. How important is it to bring more support to people with advanced MS across the country? There is a lack of consistency in the level of service, which is unfair. In the current climate we need to think outside the box to support people through other means whilst we continue to demonstrate the benefits of improving the social/NHS services that we have. We have an aging population with increasingly complex needs and to maintain good health through improved services benefits the individual and society. How has the MS Trust supported you in the role? I am truly grateful to the MS Trust for identifying the need for this role and supporting it. The team are my constant support and help me drive the project forward.

About the Advanced MS Champion Programme ‘Advanced MS’ describes the scale of impact that MS is having on an individual, rather than the type of MS they have. It is often characterised by complex, debilitating and ongoing symptoms, and can have a devastating impact. The MS Trust estimates up to 40,000 people in the UK have advanced MS. Our research shows that, too often, they are missing out on vital support from health and social care, instead having to rely on care from family and friends, and sometimes managing this debilitating disease alone. Through our Advanced MS Champion Programme we are determined to change that. Thanks to funding from The October Club, last year we pledged to fund six Advanced MS Champions at sites across the UK for the next three years. Lindsay is our first Champion and we will be announcing the next site very soon. Our Advanced MS Champions will help the people who need it most, transforming the lives of people living with this debilitating condition, as well as supporting the wellbeing of informal carers. You can find out more at: mstrust.org.uk/ams.

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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MY M S S TO RY

“MS has made me look at my life and think about what’s important” As BBC defence correspondent, Caroline Wyatt was used to being a stone’s throw from some of the world’s most dangerous war zones. But nothing could have prepared her for the daily battle that is MS. Here, Caroline tells us about adapting to life with MS, her experience of stem cell treatment, and her hopes for the future. Diagnosis Like many people I had suspicions that there was something very wrong from a much earlier stage, long before the actual diagnosis. In 1992, when I had burning and numbness in my arms, I was told that it was RSI - a repetitive strain injury. But it continued and I had other odd symptoms for a long time. In 2001 I was sent for a brain scan and was diagnosed with clinically isolated syndrome. I was told it could become MS but wouldn’t necessarily. By 2015, I was starting to get really quite ill; I was very tired all of the time - I never felt as if I’d slept; I was getting increasing pain in my arms and I was getting a lot of migraines. Finally I went to see the neurologist again who, after a lot of tests, said that it was definitively MS. In a lot of ways it was a relief to get the diagnosis because you do start to think you’re going mad. The symptoms come and go and I went to see a lot of different doctors and they’re all convinced that it was something to do with their speciality. It really wasn’t until I was told definitively this is MS that I felt able to kind of look back and say ‘So this was how it progressed over time.’

Symptoms The main symptom that I’ve always had has been fatigue. I could never understand why I was so exhausted all of the time and even if I hadn’t done anything particularly exhausting, I would wake up in the morning feeling as though I had run a marathon. Now, as the MS has progressed, the pain has got much worse. Optic neuritis is another symptom I experience; I

Picture credit: Chris Booth

“I have become much less of a planner. I used to have my entire calendar planned out”

sometimes get a blurring in one eye and there’s pain in both eyes. There’s not an awful lot you can do about many of the symptoms. You can take drugs to relieve some, but I’ve found that, for example, the nerve pain drugs make me so foggy and so unable to think that I couldn’t work and take the drugs at the same time. I personally would rather work and put up with the pain.

Adapting to life with MS I have become much less of a planner. I used to have my entire calendar planned out and crammed the days with as many things as I possibly could. Partially, I think, because of a sense that time might be running out to be able to do all the things I wanted to do in terms of travel and work. But I am much better these days, because I have to be, about planning in breaks, not putting too much in the diary, only having one meeting a day and being prepared to cancel things if I don’t feel up to it, which I was very reluctant to do in the past. I think some of that is down to acceptance; you do have to accept you can do less but equally I think I’ve probably become slightly more bolshy about saying to people: ‘This is what I can do and this is what I can’t do’.

Working with MS I always wanted to continue to work, so even when it got quite difficult, I just felt that for me A) It really helps pay the mortgage, but B) the work was and remains a really important part of my identity. I think that’s probably the case for a lot of people. I have been very, very lucky

Open Door February 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

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to work for the BBC, which is a big employer. In terms of making adjustments, even before I had the diagnosis of MS, I was able to go and talk to my bosses and say ‘These are the things I can do, these are the things I can’t do’ and as that’s changed over time they’ve been very good at responding. I think it’s only now that I am going into secondary progressive MS that it’s becoming harder to explain. MS is very difficult to explain to employers because one day you might be able to do something but the next day you can’t. Some days I can still walk down to the Tube, but there are other days where I get down to the bottom of my stairs and I just can’t go any further.

Copyright: BBC works, or why it works for some people really well and not for others at all, I would recommend that people research it. Talk to people who’ve had it, talk to the specialists and read the medical research.

Stem cell treatment

Hopes for the future Like many people I saw the BBC Panorama programme I would be really happy if people knew more about MS, presented by my colleague Fergus Walsh on stem cells and understood more about MS and there was more thought that looks interesting. I had already taken research into it, because the figures may not be two MS drugs that hadn’t actually helped. I was large but the impact that it has on people’s lives getting to a stage where I was going downhill very is enormous. It’s still a disease that is a mystery, fast and certainly my impression was that I was “You will have to mourn where they don’t really know what’s caused it, going from relapsing remitting MS into secondary the person that you and although there are many more treatments progressive MS. I looked into it, did some more research and were. . . but you can still do available now, they don’t cure it, they don’t take it away. I also hope there can be more MS decided to go ahead with it. I wasn’t accepted and achieve an awful lot” specialist nurses in the future. They can help so here in the UK for the Sheffield clinical trial, much on a day to day level where you can’t ring because I didn’t meet all the criteria, so in the your consultant, but if you are having a new end I went abroad to Mexico in 2016. It is not symptom or you need advice on something, something I would necessarily encourage people then MS nurses are essential. to do, because I think it’s much more readily available, under quite tight criteria, here in the UK Advice for someone newly diagnosed now. But I felt it was worth trying for me, partly because of my age. If you have just been diagnosed with MS, don’t panic. Because One of the issues with it is that you might well lose your fertility, whatever you imagine, it’s unlikely to get that bad. I have now had but I was 50 at the time so that wasn’t a problem for me. The MS for probably 26/27 years and despite my imaginings earlier treatment itself is chemotherapy; it is a harsh treatment but then on about how bad I would get how fast, it hasn’t got that bad that again so are some of the MS drugs. fast and it’s all been deal-able with. It gave me probably six very good months straight after the You will have to mourn or to grieve the person that you were, treatment where my brain fog lifted for the first time in years the things that you could do and some of the things that you can’t which was amazing. But sadly over the last few months I have achieve, but you can still do an awful lot and you can still achieve started to progress again, so nearly two years on I’m pretty much an awful lot. I think the one thing that having MS has done for back to where I was before the treatment. I do know people for me is make me examine my priorities and that hasn’t been an whom it has halted progression, equally I know people who’ve entirely negative thing. It means that you look at your life and been worse as a result and I know of one person who died. It is a say, ‘Well what’s important? Is it my family and my friends? Is it to risky route to take but I think the more research that goes into it a degree my work? How can I the better, because stem cell transplants and stem cell treatments work around these things so may be something in the future which are used much more as a f you that I can do enough with my first-line treatment. ave a question family but still enjoy the work It was a difficult decision and it was made in conjunction with about any of t e topics that I do?’ my family and friends, and I did go and talk to consultants. I think covere in t is intervie So I think it makes you take a it is important to go and talk to your neurologist but also to a really long hard look at yourself haematologist because it’s a haematological speciality. In the end, p ease ca our Enquiry and your life. I felt that the risks were worth it for me, but that was an entirely ervice on individual decision and had I had children or dependents then 0800 032 38 39 perhaps I wouldn’t have done it. I think as with any treatment that is still undergoing trials, a treatment that doctors don’t necessarily know exactly how it Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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M S AWA RENESS WEEK

Staying active with MS is areness eek 22 28 pri 2019 e be encouraging everyone to pop on t eir pumps an intro uce a itt e activity big or sma into t eir ai y routine. f t e i ea of e ercising it fee s a itt e aunting ere are some practica tips to get you starte .

Overcome challenges

There are several common challenges facing a person with MS who wants to exercise. Fortunately, a bit of preparation can stop them becoming barriers. Heat sensitivity is common in MS, so if you find that you get hot and uncomfortable when you exercise, try to cool the environment you are in and drink plenty of iced water. If fatigue is a problem for you, you may want to focus on exercise to strengthen your muscles, or resistance exercise. It is important to acknowledge, both when exercising and in daily life, that it is not a good idea to ‘work through’ fatigue - you may end up feeling worse, often for days afterwards.

Getting started

There is a well understood connection between exercise and mood. Being active helps with symptoms of depression and low mood. However, it doesn’t take much to put any of us off doing exercise. Feeling low or fatigued might mean you avoid exercising, even though you know that it will help in the long run. It could take some effort to get yourself past the mental barriers that are stopping you exercising. This is normal, but it will get easier once you start to feel the difference that exercise is making to your life and your MS. Some people find that not thinking about it, and just doing it helps. Have your bag ready packed for the gym, so you can just pick it up and go. If you have mobility issues, there are lots of workouts you can do that don’t require leaving your house, or even your wheelchair. You could try seated jogging: Get your arms and legs pumping as if you are running but stay seated. Even if you keep going for just one minute you will find your heart rate has gone up.

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Keep going The positive benefits of exercising do wear off if you stop, so it is important to find exercise that you enjoy doing Open Door February 2019 O ce number: 01

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because then you will keep it going. Boredom is a real issue for many people, so be prepared to add some variety to your routine. You could try using an app or gadget to make it a game, maybe counting footsteps or distance travelled. Challenge yourself to improve a little each week. Start gently and build up gradually. Why not do it for a good cause?! Raise money, awareness or just do something to make a difference. You’ll find you keep going when others are counting on you.

Take time to recover

If you have MS, it might take you longer to recover from exercise than someone without MS. You have to learn to listen to your own body and be honest with what it is telling you. The attitude of ‘no pain, no gain’ does not apply in MS. Whilst someone without MS can push themselves to exhaustion and then recover within half an hour, a person with MS should be prepared to stop before their body is telling them they have reached their limit.

Getting exercise into your daily routine

Staying active doesn’t have to involve special clothes and equipment. Anything that makes you breathe a bit deeper and gets your heart rate up counts as ‘exercise’. It could be dancing, swimming or walking. You can make small changes to boost your cardiovascular fitness - perhaps walk faster for part of your regular route (between landmarks such as seats in the park), get off the bus one stop earlier, climb the stairs, dig the garden a bit more vigorously. The increase in speed or effort need only be for part of the activity but you should be aware of breathing deeper and feeling a bit warmer from the effect on your circulation. It is good to have a trigger to remind you to exercise. Maybe do one of these exercises when the adverts or weather come on the television, or when waiting for the kettle to boil. Exercise in short bursts will still make a difference to your fitness.

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“Exercise has made me so much more confident” Our supporter Lee Gibbs, pictured right, reflects on his journey with MS and how exercise has helped him, both physically and mentally. It was about seven years ago when I first started experiencing symptoms. My legs started dragging, my arms were numb, I had lots of nerve pain and I was collapsing and blacking out. I was admitted to hospital and diagnosed with an atypical form of MS and neuromyelitis optica (NMO). I had three major relapses, with each relapse causing major damage, and I am now reliant on a wheelchair. Before, I used to play lots of football, but during this time I gave up on exercise. I was feeling very down and I put on over three stone in weight. A friend persuaded me to sign up to a gym and it really was life changing. I started on the rowing machine and I just felt a release. Not only did it help me physically, but it helped me deal with the depression I was going through. When I’m in the gym and I’m in that zone, I come out of there and I feel so much more positive. Now I go to the gym most days and do weights, use the rowing machine, the hand bike, step machine, and I go swimming with my daughter. It’s really made a big difference to my life. It’s made me much more confident because I am so much stronger now. I used to not want to go out on my own, I’d always have to have my wife with me, but now I have no fear. My advice for someone with MS who finds the idea of exercise a little daunting is to try and introduce it slowly, make sure you’re doing it in safe environment, don’t push it and be sure to take

lots of breaks if you struggle with fatigue. Being active doesn’t have to mean completing a marathon, it could be something small like doing the housework or walking to the bus stop, just try and do a little bit of activity every day.

MS Awareness Week: what we’re up to In MS Awareness Week, we’ll be launching a series of fun and accessible exercise videos for people with MS, which we’ve been developing with a neuro-physiotherapist. The videos are suitable for all levels of ability and can easily be done at home. Keep your eyes peeled for the videos on our website (mstrust.org.uk) and YouTube channel (youtube.com/mstrust). There will also be a special #WorkoutWednesday event on April 24. We’ll bring you more details about this at mstrust.org.uk/ msawareness

Miles for MS Feeling inspired? Why not sign up for Miles for MS this May? That way you can get more active AND help make a difference for people with MS. Whether it is half a mile or 100 miles, you pick how far you want to go and do it your way! Walk, wheel, arm cycle, swim, cycle, run, row… it’s up to you. Choose your distance and complete it in your own time over the course of the month, tracking your progress on your personalised fundraising page and raising vital funds. You don’t have to do it alone either, why not get your office, gym class or family involved too? You might decide that you want to ride 20 miles on an exercise bike or arm bike, and break it down to half a mile each session. Or maybe you want to run a marathon (26 miles) over the month, but do it by running shorter distances a few times each week. Perhaps your personal challenge would be to walk to the post box and back, and you could build up to it over the course of the month. Sign up for just £15 and you will receive an MS Trust T-shirt, your own personalised online page where you can track your progress and raise funds, and a certificate when you finish. If you raise over £125, you’ll also get a ‘Miles for MS’ medal to wear with pride. Find out more and sign up today at: mstrust.org.uk/miles

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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FO CU S O N : M E N TA L H E A LT H A N D M S

It’s good to talk Living with a long-term condition like MS does not only mean facing physical challenges, it can mean overcoming mental challenges too. Around half of all people with MS will experience depression at some point in their life. But depression is treatable, and understanding what support is out there if you are feeling low is really important. So at a time of year when the post-Christmas blues have well and truly kicked in, we’re focusing on the talking therapies that are available to help improve low mood. Here we look at counselling and cognitive behavioural therapy.

Counselling

Cognitive behavioural therapy (CBT)

What is it? Counselling provides a safe space for you to open up and talk about any worries, anxieties or difficulties you’re facing in your life. Your counsellor will listen to how you’re feeling and help you find ways to understand those feelings and develop strategies you can use to deal with them going forward. Counsellors are trained to help people who are going through a wide range of difficulties in their life; they can help people learn to cope with depression and anxiety, and long-term conditions like MS. How is it delivered? Depending on the service available in your area, counselling sessions can take place face-to-face, over the phone, in a group or online through email or live chat services. NICE guidelines recommend that people with mild to moderate depression should have between six to 10 sessions over a period of two to three months. How can counselling help? MS is an unpredictable condition and the uncertainty this brings can lead to feelings of anxiety and low mood. Similarly the challenges that some symptoms can cause may also bring about lower self-esteem and negative thoughts. These are both areas that can be discussed with a counsellor. Your counsellor won’t tell you what to do, but they can help you to develop coping techniques and adapt to changing symptoms. You might find the first sessions quite difficult emotionally as you begin to talk about upsetting and painful issues in your life. This is completely normal. It may take a few sessions before you start to feel the benefits of counselling. So be patient and try not to feel disheartened if you don’t start to feel better straightaway.

What is it? CBT is mainly used to treat anxiety and depression. It’s all about recognising your thoughts and understanding how they impact on your emotions and actions. When you see a therapist, they will want to understand your thought processes, feelings and behaviours and work out whether any of these are unhelpful or unrealistic. They will then suggest ways of changing how you think, feel and behave which you can practise in your daily life and which may break the cycle of low mood and depression. How is it delivered? Sessions can be face-to-face with a therapist or delivered over the phone. There are also computerised CBT programmes which you can go through yourself and a therapist will review your progress as you go along. Group-based CBT is another option. Sessions are usually delivered in groups of approximately eight to ten people. For people with mild to moderate depression, NICE recommends a guided self-help programme which is based on CBT. This involves seeing a therapist between six to eight times over a period of 9–12 weeks and working through a range of selfhelp materials in between sessions. There are a number of CBT-based self-help guides available online. Moodzone, an online resource from the NHS, has a CBTbased audio guide for tackling low mood (nhs.uk/moodzone). How can CBT help? Being more aware of your thoughts can make it easier to notice how they’re impacting on your mood and other areas of your life. When living with a condition like MS, it can be easy to get frustrated and blame yourself for things that aren’t necessarily your fault and you have little or no control over.

Open Door February 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

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For instance, if leg spasms suddenly come on and all the house cleaning you had planned for the day doesn’t get done, you may start thinking negatively about yourself because you didn’t achieve what you’d hoped to that day. These negative thoughts may affect your emotions – you might start feeling down, angry or upset. By the time the spasms have stopped, all these emotions may have left you feeling exhausted so you no longer fancy going out with your friends that evening and you decide to cancel. See how thoughts, emotions and actions are all interlinked? Maybe this chain could have been broken by changing those negative thoughts at the beginning and being a bit kinder to yourself. This is what CBT aims to do; it can help you break the cycle by teaching you to be more aware of your thoughts, allowing you to make those positive changes so unhelpful thoughts don’t have a negative impact on your life.

How can I access talking therapy services? Talking therapies are available on the NHS although we understand that waiting lists can be very long. Your GP can refer you to services in your area. If you’re based in England, in some areas you can refer yourself by searching for your local service on the NHS website (beta.nhs.uk/find-a-psychological-therapiesservice) and contacting them directly. If you find you’re having to wait a long time to access these services on the NHS, there are some other organisations you can turn to for support. • MS-UK provide a counselling service for people with MS – see our Q&A with Diana Crowe, Head of Services at MS-UK, for more details. • MS Therapy Centres provide a range of non-drug therapies for people with MS, usually at a subsidised price. Some centres offer a counselling service. You can search for your nearest centre on our map mstrust.org.uk/map. • Some MS Society groups offer counselling services. You can search for your nearest group at mssociety.org.uk/careand-support/local-support. • The charity Mind has local groups all over the UK which provide peer support sessions, talking therapies and workshops. Search for your local group at mind.org.uk/ information-support/local-minds. • Rethink Mental Illness has a range of support groups in England. Find your nearest group here rethink.org/ services-groups. If you choose to look for services privately, the websites of the British Association for Counselling and You can find Psychotherapy (BACP) and the more information on UK Council for Psychotherapy talking therapies at (UKCP), allow you to search mstrust.org.uk/a-z/ for private counsellors and psychological-therapies psychotherapists near you.

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We caught up with Diana Crowe, MS-UK’s Head of Services, to discuss its new counselling service for people with MS Can you give a brief overview of the MS-UK Counselling service? Established in October 2017, MS-UK Counselling is a confidential, national service for people living with MS. What can people with MS talk to your counsellors about? Anything that is MS related, that might be affecting your mental health. Counsellors do not give advice but help you to explore your experiences so that you can find your own way forward. Our counselling service is focused on helping you understand yourself in light of your MS and explore its emotional impact on your life. Why did you decide to set up this service? Before its launch, we conducted a consultation process with the MS community to identify gaps in MS care. The result informed the charity of a significant need for a counselling service and it continued to engage with them as it shaped what the service should look like. During the research we found 77% of people said they would access a counselling service via a telephone. We felt this mode of delivery would make our counselling service truly accessible to the whole of the UK. MS-UK is a British Association for Counselling and Psychotherapy (BACP) organisational member and its counsellors are BACP registered or accredited. They all have specialist training and experience of MS and the impact it can have on mental wellbeing. How can people register for counselling? If you would like to access MS-UK Counselling, simply visit ms-uk.org/counselling and complete an online form, or a health professional can make the referral for you. Alternatively, you can call the MS-UK Helpline on Freephone 0800 783 0518 and an MS Advisor will complete the form for you over the telephone. Once submitted MS-UK will contact you to arrange an assessment, also conducted over the phone. This takes about 30 to 45 minutes. It allows the counsellor to identify what is bringing you to counselling and to discuss any mental health issues you may have. Suitability and availability will be discussed, and a telephone counselling contract will need to be agreed before you are added to the waiting list. Once you have been assigned a counsellor, up to six telephone counselling sessions of 50 minutes will be provided on an agreed regular day and time slot. Do people have to pay to use the service? There is no fixed fee, however, a suggested minimum donation of £5 per session helps MS-UK sustain the service in the long term and enables other people with MS access to the service.

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A S K T H E E X P E RT

Managing pain Pain in MS can come in many different forms. Burning, throbbing, aching, stabbing, numbness and crawling are just some of the many ways that people with MS describe it. To shed some light on how pain is managed in MS, we put some of your questions to consultant nurse in pain management, Sue Barnes.

What medication is available to treat pain and how effective is it?

Sue says: Different types of pain are treated with different medication. Your GP or your MS team will ask you to describe your pain before prescribing any medication to help determine the type of pain. Pain in our muscles, joints and ligaments can be caused by changes in our posture and the way that we walk and move – this kind of pain is called musculoskeletal pain. Any sort of musculoskeletal pain, for instance pain on movement and bending, would be treated with your traditional painkilling tablets like paracetamol and codeine, or in some cases, but only taken for short periods of time, ibuprofen or naproxen. Neuropathic pain, or nerve pain, is caused by our nerves misbehaving and misinterpreting messages. People often describe this sensation as a burning or shooting pain, or numbness or pins and needles. This type of pain is treated with medications that are not traditional pain medications, such as amitriptyline, duloxetine,

gabapentin and pregablin. These medications are used for depression and epilepsy but they can actually be very effective at calming down those misbehaving pain nerves and reducing the constant firing of pain nerves. When we talk about nerves misbehaving it can create a very intense pain. When pain is very intense it can be as though somebody has turned up the music really loud and so it becomes allconsuming and you can’t think of anything else. Medication for nerve pain is going to try and work on those misbehaving pain nerves and reduce the intensity of that pain and make it more of a background noise rather than that loud, intrusive kind of sensation. Unfortunately they can’t completely stop that sensation, they can only reduce it to more of a background level.

Is there anything I can do to manage pain myself, like lifestyle changes and complementary therapies?

Sue says: Managing pain is very much a team effort with you and your MS team. Medications only play a small part in reducing pain – we generally say to people that realistically pain medication will only provide 30–40% of your pain relief. So although health professionals can prescribe medication to help manage your pain, you very much have a role to play too. How you manage your MS and the day-to-day activities you take part in will play a big contributing role in living with persistent pain and managing it successfully. We talk to people a lot about pacing our activities, for example breaking down everyday tasks into smaller chunks so you’re not pushing yourself too much and potentially making your pain worse. We also talk to people about the benefits of self-management strategies such as relaxation and mindfulness. Living with pain is extremely frustrating and stressful; it is a natural stimulant to our body which make us feel more anxious. This in turn causes our bodies to produce more adrenalin which fuels our pain nerves, so they become more active, and creates muscle tension. It is very helpful if you can find a way to decant some of the stress that the pain brings and this is where complementary therapies can be really beneficial. Some people use therapies such as Tai Chi, Pilates, acupuncture and aromatherapy which can all help.

Open Door February 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

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Experiencing pain so frequently makes me feel really low in mood at times. What can I do?

Sue says: We hear this a lot in our pain centre. I think it is helpful to remember that we are human beings and not robots so our pain isn’t just a physical hurting sensation. It affects our thoughts, feelings and emotions which all go hand-in-hand with each other to influence the pain system. Being in pain is distressing and it can make us feel very helpless and frustrated. Eventually it can make our mood feel a little bit low and we can sometimes end up feeling depressed. It’s important to let your GP or someone in your MS team know if you’re feeling like this. We know that if our mood gets low, it’s as though somebody has turned up the intensity of our pain. It is important

to recognise when your mood is low and perhaps consider doing an activity you enjoy during this time. Sometimes we can get very focused on doing the everyday tasks that we must do rather than thinking about the time and energy we could spend each day on doing something we find enjoyable. Finding an activity that you find pleasurable and enjoyable can be really useful because this will help to release your own natural endorphins – which are your feel good chemicals – helping to lift your mood in a more natural way. It could be anything from a short walk in the countryside to drawing or painting – anything that makes you feel good.

What treatments are most successful in managing trigeminal neuralgia?

Sue says: We see lots of people with MS who unfortunately have facial pain as a result of trigeminal neuralgia. This pain is often described as a brief, intense, electric shock-like sensation, or a sharp, stabbing sensation down the side of the face. It is usually caused by pressure on the trigeminal nerve from a nearby blood vessel which causes the protective covering around the nerve to wear away. This makes the nerve more excitable and sensitive, causing it to activate pain signals with little or no trigger. The trigeminal nerve controls the muscles you use when chewing and is responsible for sensation in your face, including the forehead, above the eyebrow, the cheek area and the jaw. It can often be mistaken for dental pain. Sometimes there can be no trigger for the pain or it can be triggered by everyday activities like talking, brushing your teeth, shaving or touching your face. It’s best to seek

advice from your GP or MS nurse if you’re experiencing this type of facial pain. They may refer you on to a specialist pain centre to discuss management options. Treatment options that a neurosurgeon may consider after reviewing an MRI scan of your brain include surgery to prevent the blood vessel from rubbing against the trigeminal nerve, or a glycerol injection to coat the nerve at the area of damage and reduce its sensitivity. There are other procedures that involve using either chemicals or heat to damage the nerve. Alternatively if we feel the trigeminal nerve is misbehaving and firing but it’s not being compressed by a blood vessel, or there’s nothing irritating that nerve that can be seen on an MRI scan, then we look at medication. Carbamazepine would be the drug that your GP or someone in your team would start with.

Who should I speak to if my treatment for nerve pain isn’t working?

Sue says: Your GP or MS nurse can go through alternative options if your current treatment isn’t working. GPs are very knowledgeable about the right medications to put you on or it may be someone in your MS team that will be able to support you and help you decide what treatments and management strategies you’d like to try next. There is the option to ask to be referred to a specialist pain centre. We see people who have got longterm pain as a result of MS who have found that their medications are helping a little but not a great deal. We help people learn how to manage the knock-on effects of living with persistent pain and talk through strategies for handling pain differently. We don’t have any magic drugs; it is very much about learning self-management strategies, gaining a better understanding of your condition, aiming to stay active and maintaining a positive attitude despite dealing For more with ongoing pain.

information on managing pain visit mstrust.org.uk/pain

Sue Barnes is a consultant nurse in pain management at Salford Royal NHS Foundation Trust. She has a specialist interest in the management of neuropathic pain and has treated many people with MS.

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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G E T I N VOLVED

Mission possible oin t e mission an e p us ensure everybo y it can ive t e best ife possib e. Every week 100 people are told they have MS. This can be a devastating time. They may feel lost, confused and uncertain of the future. With the help of you, our amazing supporters, we want to make sure they don’t have to deal with this diagnosis alone.

How can I help? You can sign up to Mission 100, our brand new fundraising challenge. Your mission, should you choose to accept it, is to raise £100 in 100 days and ensure the 100 people diagnosed with MS every week get the information and support they need and deserve. Be one of the first 100 people to complete your mission and receive a special MS Trust reward!

How will my £100 help support people with MS? The £100 you raise means we can make our Making Sense of MS booklet available to the 100 people diagnosed with MS each week. The book covers many different aspects of

MS, including what happens after diagnosis, how to explain MS to friends, family, and work colleagues, the health professionals who can support you, the lifestyle factors and treatments that can help, plus lots more.

Mission accepted. But how do I raise the money? Any way you like! Perhaps you could have a sponsored head shave or a no shave? Maybe you could take part in a digital detox? Organise a quiz down your local pub? Or hold a cake sale at work? You could get your mates together for a charity football match? Or a fun run? The possibilities really are endless!

Where do I sign up? Go to mstrust.org.uk/mission100 to download your Mission 100 Pack today. Good luck and thank you for your support.

Remembering my sister with a 50-day cycle ride Our amazing supporter Kenny Smith is getting back in the saddle this summer as he cycles around the UK for 50 consecutive days to raise money for the MS Trust and celebrate what would have been his sister Kathleen’s 50th birthday. Kenny will be cycling around mainland Britain, starting in the centre of Chichester on 12 June and finishing on Kathleen’s 50th Birthday on 31 July, back in Chichester. He will be riding solo, unsupported and carry everything he needs for the 50 days. Not content with just cycling 2,655 miles, he is also planning to trek the highest peaks in Wales, Scotland and England on the way. “My sister Kathleen was diagnosed with MS way back in in 1990, aged just 21,” says Kenny. “She coped well for many years living with MS and never let it get her down; she was always smiling and never complained.” Over the years Kenny has taken on many incredible feats for the MS Trust, running marathons, trekking all over the world, and more recently cycling to Amsterdam all to raise funds in Kathleen’s memory and to support the 100,000 people living with MS today. Kenny says, “Without doubt this will be the biggest challenge I have ever undertaken, physically, emotionally and mentally. ” You can find out more about Kenny’s incredible challenge and how to support it at 50dayscycleride.uk. Don’t miss the May issue of Open Door for an interview with Kenny.

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Pedal power

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 My Garden Party

Jo Wessell took part in the London to Brighton Bike Ride for the MS Trust in September last year. Here she reflects on “the most amazing experience” I previously had been a runner and competed in a 10k and a half marathon. But I had two big relapses in the months after the half marathon, which resulted in optic neuritis and foot drop to the left foot. This caused big physical and mental difficulties. After being so active with my dog walking and running, I then had all this taken away from me. But I was fortunate to meet Paralympic swimmer Stephanie Millward at the Bristol MS Centre and also an MS psychologist, and they both advised me to focus on what I could do rather than on what I couldn’t. I started to get some recovery in the foot drop and I then thought I would see how I could manage on a bike having loved cycling as a child. I soon found that I ‘COULD’ still do it! This was my new found sport and I started to look at setting up challenges. I completed sportives and set up a cycle club in the village where I live. I then decided to sign up to the London to Brighton Bike ride along with members of the cycle club. The ride was amazing. The support and facilities were excellent throughout the ride. Starting in the hectic area of Clapham Common to then head out into the beautiful roaming countryside. The ride was a challenge, with the greatest being cycling up Ditchling Beacon at the end. Some people walked up the big climb others cycled it. There was no pressure, just encouragement and support all the way. The final part of the ride was the cycle down into Brighton, with cheering squads, relatives and friends supporting you all the way. There was a massive feeling of pride and emotion going over the finish line and we managed to raise £1,470 for the MS Trust, which made the feeling even better!

Join us for the 2019 London to Brighton bike ride! Sign up now for just £55 and be a part of our team as an official charity partner. Minimum sponsorship is £150 per person and the event takes place on September 15. Visit mstrust.org.uk/londontobrighton.

Summer may feel a little way off at the moment, but it’s never too early to start planning your garden party for the MS Trust. Visit our website for your My Garden Party pack. mstrust.org.uk/mygarden

London Marathon Did you get a ballot place in the 2019 London Marathon? Join Team MS Trust and help make a difference for people with MS today. We’ll be there to support you every step of the way. mstrust.org.uk/ballot

Great North Run We’re looking for runners to take on the world’s biggest half marathon on September 8. This famous race is renowned for its incredible atmosphere; sign up today and experience it for yourself. mstrust.org.uk/greatnorth

RideLondon-Surrey 100 If you’re a keen cyclist, we have the race for you. Ride London, which takes places on August 4, is a 100-mile ride which starts at Queen Elizabeth Olympic Park, then follows a route on closed roads through the capital and into Surrey’s stunning countryside. mstrust.org.uk/ridelondon

Three Peaks Challenge Join us for an exciting challenge and take on the three highest peaks in England, Scotland and Wales this September. mstrust.org.uk/threepeaks

Asics 10k 2019 A fantastic run through London, which takes you past some of the city’s most iconic landmarks. Join our team on July 21 and run to support people with MS today. mstrust.org.uk/asics10k

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

Open Door February 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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1 5 M I N U TES WITH MS TRUST SUPPORTER

Trish Deykin ack in ovember rust supporter Trish Deykin as a ar e e imes e en o ason ar for nspiration in recognition of er ama ing ac ievements in t e triat on. ere ris te s us about er ourney it o staying active as e pe er ea it t e con ition an y s e s etermine not to et stop er fo o ing er reams. When were you diagnosed with MS and how have you dealt with your diagnosis? I was diagnosed in 2004 after having what I now know to be two relapses. When MS was first mentioned to me, I thought it was the end of the world but I had to wait a fair few months (how many I can’t remember) before I had a lumbar puncture and evoked potential tests done. A few months after that it was confirmed. I think the months of waiting for tests and results was the worst so once it was confirmed I was actually rather relaxed and pleased that there was something wrong and that it wasn’t just in my brain (no pun intended!). I used sport as a way of ‘switching off’ the anxiety of not knowing if it was MS or not. Working out in the gym just took my mind off it. Do you feel that being diagnosed with MS has changed your outlook on life? It has definitely changed my outlook on life. Although MS is not terminal it does make me make the most out of each day and live life to the full as much as I can. It has also made me more stubborn and determined and overall a stronger person. Yes, I have MS but there are plenty of other illnesses which are far worse. What are the main symptoms you experience day to day? The main symptoms I have on a daily basis are pain in my eyes, fatigue, burning sensations on my legs and crawling ants on my back. I also have balance problems, cognitive problems and pins and needles on my right arm and hand which can prove difficult when putting my shoes on, writing and typing. When did you discover a love for triathlon? I found the love of triathlon two years before I was diagnosed. I was doing quite well when I was diagnosed but I was told to stop competing by my then neurologist - so I did. I kept keeping fit but got bored and needed a goal so I entered a local triathlon, won and the bug was back.

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How has staying active helped with your MS? Keeping active has definitely helped my MS. Pilates is brilliant for helping balance problems, swimming is the perfect pain killer and sometimes I go swimming just for pain relief. Keeping active also boosts my mood which starves off the negativity that MS brings, plus it means I can eat chocolate every day! How did it feel to win the Helen Rollason Award for Inspiration? Winning the Helen Rollason Award for Inspiration was amazing and I can’t believe it was given to me! To be given such a prestigious award is an absolute honour and to be in a room of such amazing and lovely sportswomen was unreal. It was an amazing and crazy evening. How has the MS Trust supported you? The MS Trust have been super supporting me through my MS. I found the leaflets and booklets available such a relief. The fact that there was information out there which is easily available and so knowledgeable made me realise that it’s not just me who has those symptoms/feels that way. I’ve also used the phone number - to talk to someone who knew what I was experiencing was such a reassurance. What advice would you give someone who’s just been diagnosed with MS? My advice to someone who has just been diagnosed is for them to know it’s not the end of the world. You can carry on with your life even if you do have to manage it around your MS. Sometimes adjustments are needed but don’t dwell, deal with them then Fin out more about look forward. If you have a dream, go for it staying active it and don’t let MS stop you. You only live once at after all.

mstrust.org.uk/exercise

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Be Bold in Blue for the MS Trust

and make a difference for everyone affected by MS

Sign up now! Online: mstrust.org.uk/blue On the phone: 01462 476707 By email: fundraising@mstrust.org.uk Reg charity no. 1088353 General Poster.indd 1

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Questions about MS? What is this weird symptom I'm experiencing?

How can I get in touch with my MS nurse?

What lifestyle changes can I make to help improve my MS?

Why is the temperature affecting me so much?

We're here to help. Call our Enquiry Service for free on 0800 032 38 39* or email infoteam@mstrust.org.uk *Open 9am–5pm Monday–Friday OD February 19 working file.indd 24

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