7

18

MINDFULNESS

TREATMENTS

Autumn/Winter 2016

Friday the 23rd September 20169.00am - 4.30pmCPD points available on request

Cost of the day including lunch is €60

Neurological Information Day

For Health Care Professionals

MS & Brain Health

In the

Cork International Hotel,Cork Airport Business Park,Co. Cork

Western Regional Office,Curragrean, Merlin Park,Galway.t: 091 768 630 e: western@ms-society.iewww.ms-society.ie Infoline: 1850 233 233

For more information and to book please contact

Friends,

I am delighted to be able to present the 100th issue of MS News! The first issue of MS News was released 36 years ago in 1980. Turn to page 10 for a look back at our 1st, 25th, 50th and 75th issues and some of the key milestones we have marked since then.

The theme for this very special issue is Brain Health, which is also the theme for our Healthcare Professionals Day and National Conference on 23rd and 24th September. You can find more information on the Conference including an agenda and booking form on pages 16 and 17. To explore the theme of Brain Health, we also have some fascinating pieces from key experts in the field on pages 7, 8 and 9.

We also have updates on MS treatments on pages 18 and 19 and an in-depth report from the European Multiple Sclerosis Platform conference on pages 12-14. As always, we have plenty of news from our national office staff, regional teams and branches.

In light of the recent media stories on the charity sector I would also like to use this opportunity to give you a sense of our commitment to good governance. We want to reassure you that MS Ireland is transparent, ethical and has on-going and effective audit processes in place. We value every donation we receive and are always mindful that it is our duty to use the money to achieve the biggest possible impact for people living with MS. You can read more about our governance policies and practices in the ‘What we do’ section of our website www.ms-society.ie

Enjoy the issue!

Ava Battles

CEO

‘MS News’ is the magazine of MS Ireland. It exists to foster informed debate and comment about all issues relating to MS. The view of contributors are not necessarily those of the Society. No treatments or therapies should be attempted or products used without qualified medical or professional advice.

Multiple Sclerosis Ireland, 80 Northumberland Rd, Dublin 4. www.ms-society.ie | 01 678 1600 info@ms-society.ie | Info Line: 1850 233233

EDITOR & EDITORIAL Harriet Doig harrietd@ms-society.ie ADVERTISING Ailis Egan Tel: 01 6781600, ailise@ms-society.ie

CONTENTS

News ...........................................................

Brain Health ...........................................

100th Issue Reflection ....................

Conference Report ............................

My Story ..................................................

National Conference ........................

Treatments .............................................

Regions ....................................................

Information Line ..................................

My MS My Needs ...............................

Fundraising ............................................

Branches .................................................

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7

10

12

15

16

18

20

22

24

25

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12 22

For more information and to book please contact

www.ms-society.ie3

On 2nd June, MS Ireland, supported by Novartis and Ibec, launched a set of practical employment resources to support people with MS and their employers. Mary Mitchell O’Connor TD, Minister of Jobs, Enterprise and Innovation, officially launched the resources. The resources, entitled: ‘Working with MS: An Employment Resource for People with Multiple Sclerosis’ and ‘Working out MS in the Workplace: A Practical Toolkit for Employers’, follow on from the ‘Societal Cost of Multiple Sclerosis’ report which was launched last year. The resources were accompanied by a new report ‘Multiple Sclerosis and Employment: Facts and Figures’ which drew on data from the Societal Costs of MS report and international data on MS and employment, and made detailed policy recommendations.

The resources will provide advice and guidance to people who are living with MS on issues such as whether they will be able to continue to work; discussing their diagnosis with their employer; managing career flexibility and change; and what legal rights they have. The resources also detail various financial supports available to employers to help with adaptations and change. The resources also include case studies from those living and working with MS.

Mary Mitchell O’Connor, Minister of Jobs, Enterprise and Innovation, said “While more people with MS are in employment today than in the 1990s due to better treatments and disease management, further improvements are needed. Demystifying some of the concerns around working with MS and supporting employees with MS will help people make informed decisions about their careers and make employers aware of the supports available to them. Creating the right environment for growth means we need to ensure that there is a competitive business environment and that we invest in the health of our workforce. These resources will be extremely useful to help people with MS to continue to participate in the workplace. I congratulate MS Ireland on this initiative, supported by Ibec and Novartis”.

The launch took place in the Mansion House. After the opening address by the Minister, Ava Battles, CEO of MS Ireland, presented some of the key data from the

report. This was followed by a Q and A session with Kieran Kingston and Emma Hughes from Novartis on their experiences of working with MS from the employer and employee perspectives. Then Harriet Doig from MS Ireland spoke about the development and content of the resources and Claire Dolan, Occupational Therapist from St James’s Hospital, presented some of her research on employment and MS and some of the practical solutions that can be developed to problems in the workplace.

MS Ireland launches new set of employment resources for people with MS

Left to right: Ava Battles, CEO, MS Ireland; Harriet Doig, Information Advocacy and Research Officer, MS Ireland; Peter Carney, Health Economist, Novartis; Ruth MacIver, MS Brand Lead, Novartis; Claire Dolan, Occupational Therapist, St James’s Hospital

Left to Right: Loretto Callaghan, Managing Director, Novartis; Mary Mitchell O’Connor, Minister for Jobs, Enterprise and Innovation; Ava Battles, CEO, MS Ireland

To download the resources please visit www.ms-society.ie/pages/living-with-ms/information-centre/our-publications

Hard copies are available from National Office and your local regional office.

N E W S

www.ms-society.ie 4

The World vs.MS

MS Ireland has partnered with Sanofi Genzyme in The World vs.MS, a new initiative that aims to expose the daily challenges of multiple sclerosis and develop ideas to solve them. And after receiving a huge 103 challenges of living with MS from people all over the world, it’s off to a great start.

The World vs.MS Steering Committee – people living with MS, carers, charities, healthcare professionals and innovators – shortlisted 15 of the 103 challenges, taking into account relevance, prevalence and the overall value a potential solution could offer to those living with MS when making their decision. The World vs.MS Judging Panel – including MS Ireland’s Harriet Doig and representatives from business accelerator Entrepreneurial Spark, technology company WIRED and Sanofi Genzyme – they met in Dublin on 22nd June, to use their knowledge and expertise from both the MS and innovation fields to select the final three.

The next step is to work closely with the chosen challengers themselves to create three briefs providing a detailed overview of each challenge. Then it will back over to the international MS community to come up with suggestions on how the challenges can be solved.You can keep up to date with The World vs.MS by following them on Twitter and keeping an eye on their website -

www.theworldvsms.com

N E W S

MS International Federation Global

Networking Meetings

In April, the MS International Federation (MSIF) held a series of networking meetings at the Gibson Hotel in Dublin. Representatives from MS organisations all around the world attended to share ideas and learn from each other’s experiences. Topics discussed included future plans for World MS Day, the work of the Progressive MS Alliance and global fundraising initiatives including Kiss Goodbye to MS. A meeting of the People with MS Advisory Committee also took place, which was attended by Joan Jordan, MS & Me blogger for MS Ireland.

MS Ireland also presented two recent projects – the Societal Costs of MS report and the Access to Medicines Campaign Handbook. Ava Battles, CEO, gave an introduction to MS Ireland and an overview of the organisation’s services and work, followed by Aidan Larkin, National Services Development Manager and Harriet Doig, Information, Advocacy and Research Officer, who presented on the methodology and results of the Societal Costs of MS project. Joan Jordan then read out one of her MS & Me blogs and gave a brief overview of her work with EUPATI (European Patients Academy on Therapeutic Innovation). Then, Aidan and Harriet spoke about the Access to Medicines campaign and how and why the campaign handbook was developed.

Left to right: Sophie Paterson, Communications Manager, MSIF; Dhia Chandraratna, Head of Research, MSIF; Joan Jordan, MS & Me Blogger

Harriet Doig, Information, Advocacy and Research Officer, presents on Access to Medicines with Aidan Larkin, National Services Development Manager (right)

The World vs.MS Judging Panel hard at work

www.ms-society.ie5

My Pain Feels Like

MS Ireland partnered with Chronic Pain Ireland and Grunenthal Pharma for the My Pain Feels Like campaign. This national campaign aims to raise awareness of pain and how you can describe your pain when communicating with healthcare professionals.

www.mypainfeelslike.ieThe main goal of ‘mypainfeelslike...’ is to support communication between patients and doctors. Pain is often difficult to describe and a mismatch in language causes misunderstandings that can lead to an inefficient ‘trial and error’ treatment approach.

MS Ireland would like to thank MS & Me blogger, MS advocate and person with MS Willeke van Eeckhoutte for participating in the campaign.

N E W S

PwMS Willeke van Eeckhoutte (right) at the launch of My Pain Feels Like

We Need Our Heads Examined

Launch of campaign for development of neurorehabilitation services

MS Ireland has been working closely with the Neurological Alliance of Ireland (NAI) and other NAI member organisations to develop a campaign to call on the government to invest in Ireland’s critically underdeveloped neurorehabilitation services. The formal campaign ‘We Need Our Heads Examined’ was launched in the Mansion House on 23rd June. Ava Battles, CEO of MS Ireland and Chair of NAI, opened the event followed by talks from Professor Mark Delargy, Clinical Director at the National Rehabilitation Hospital; Reinhard Schaler, a father whose son Padraig suffered an acquired brain injury (ABI) in a road traffic accident, and was forced to travel to Germany for treatment; and person with MS Alexis Donnelly who had to travel to Spain to receive neurorehabilitation.

NAI will be following up with further advocacy and campaigning work over the coming months. Keep an eye on MS Ireland’s and NAI’s social media pages for the most up-to-date information on the campaign and details of how you can get involved.

Left to right: Ava Battles, CEO, MS Ireland; Alexis Donnelly, PwMS; Professor Mark Delargy, Clinical Director at National Rehabilitation

Hospital

www.ms-society.ie 6

B R A I N H E A LT H

Mindfulness By Ann Grover

Clinical Nurse Specialist Neurology, Cork

Mindfulness is a hot topic; interest has exploded in recent years. The practise was adapted by Jon Kabat-Zinn in the late 1970’s.

Research suggests that mindfulness meditation can be beneficial for people living with multiple sclerosis with few to no harmful side effects. Benefits reported were a decrease in fatigue, depression, anxiety, stress, pain and spasticity and improved sleep, coping and a sense of wellbeing, all of which contributed to an increased quality of life (Frontario et al., 2016, Grossman et al., 2010, Simpson et al., 2014). All of this comes from a simple practise of paying attention in a special way, on purpose, in the present moment, and non-judgmentally (Kabat-Zinn, 2013).

Mindfulness is a practice, a way of being, rather than a good idea or clever technique and involves both concentration and acceptance. By mindfully focusing on the five senses of smell, touch, sight, sound and taste it is possible to experience the world in a new way, viewing the present moment with a “beginner’s mind,” as if you were seeing it for the first time. By increasing our awareness it is possible to break away from habits and ways of thinking which may no longer be useful. Almost everything we do, we do for a purpose - meditation is ultimately a non-doing (Williams and Penman, 2011).

Mindfulness can be a formal practice where you actively take time out of your day to check in on yourself with a variety of different meditations. This practice is not time intensive, but it does require you to turn off from your surroundings and focus inward. Informal practice during the day can enable you to refocus. It can take some time to become comfortable with mindfulness techniques - if one method does not work, try another.

Try a three-minute breathing space. You can do this sitting, standing or lying. Adjust your body so that your shoulders are relaxed and back straight. Allow your eyes to close or gaze downwards. In the first minute take a wide perspective. What are you thinking? What are you feeling? What body sensations do you have? Acknowledge them, without trying to change them. In the second minute narrow your focus to your breath, follow the sensation of breathing in and out. Use the breath as an anchor to help ground yourself into the present moment. Your mind may wander, when you notice this bring it back to your breath. For the third minute widen your perspective again, getting a sense of your whole body breathing. If you experience any discomfort or tension feel free to take your breath to that place and explore the sensations, acknowledging them rather than trying to change them. When you are ready return your awareness to your whole body in this moment. (Adapted from Williams and Penman, 2011, p.130).

Neuroscience has shown the practice of meditation appears to improve the brain. Studies show that meditators have a measurably thicker tissue in the pre-frontal cortex which can assist with concentration, attention, empathy, emotional regulation and decision-making (Congleton et al. 2015). Meditation has been shown to boost the immune system and improve energy and happiness. Through fMRI it has been shown that the insula becomes energised through meditation. The insula helps to mediate empathy, compassion and kindness (Williams and Penman, 2011).

Mindfulness practice can be woven into your day. Start the day with a mindfulness exercise. Practice eating or moving mindfully focusing on the senses. Think of 10 things each day that you are grateful for. When you are tired, anxious or stressed take a breathing space. At any time during the day you can return to your breathing to anchor yourself in the moment.

A full range of mindfulness resources are available at www.mindfulnessclinic.ie

References: Congleton, C., Holzel, B. K., Lazar, S.W. (2015). Mindfulness can literally change your brain. Harvard Business Review. Accessed on line 26/05/2016. https://hbr.org/2015/01/mindfulness-can-literally-change-your-brain.

Frontario, A., Feld, E., Sherman, K., Krupp, L., Charvet, L. (2016). Telehealth mindfulness meditation improves cognitive performance in adults with Multiple Sclerosis (MS). Neurology. April 86,16 Supplement P3.092.

Grossman, P., Kappos, L., Gensicke, H., D’Souza, M., Mohr, M., Penner, I.K., Steiner, C. (2010). MS quality of life, depression, and fatigue improve after mindfulness training. Neurology. September 75,13 1141-1149.

Kabat-Zinn, J. (2013). Full Catastrophe Living : Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. (Revised Ed.). New York. Bantam Books.

Simpson, R., Booth, J., Lawrence, M., Byrne, S., Mair, F., Mercer, S. (2014). Mindfulness based interventions in multiple sclerosis - a systematic review. BMC Neurology. 14,15.

Williams, M., Penman, D. 2011. Mindfulness. A practical guide to finding peace in a frantic world. Great Britain. Piatkus.

www.ms-society.ie7

B R A I N H E A LT H

Fiona O’Donovan, Prof Alice Stanton & Prof Niall Pender

The human brain is an incredible organ. It is immensely complex and controls all aspects of our lives from basic life support to complex emotions and social interaction. In many cases we only truly understand its complexity when it starts to go wrong.

The brain consists of different regions which specialize in different skills. These regions seamlessly manage, control and organise our inner experience and connect through circuits created by white matter tracts. These white matter tracts are covered in myelin sheaths which improve the transfer of impulses across the nerves. In MS, inflammation of the myelin causes damage to underlying neurons and their connections with each other. This causes the variety of symptoms experienced by many people with MS. Because the site of inflammation can occur in any white matter tract the symptoms can be varied.

Figure 1. Lobes of the Brain (Source: Wikimedia commons)

Neuropsychology of MS

In brief, neuropsychology is the study of how the brain manages behavior, thinking and emotion and what happens to these skills when the brain function is damaged by illness or injury. As neuropsychologists we see that MS patients often report difficulty with memory, fatigue and concentration.

Cognitive reserve

The idea of cognitive reserve rests on the assumption that cognitive abilities are flexible, and can be trained and strengthened throughout the lifetime. Certain activities, such as reading or playing a musical instrument stimulate the brain and can be thought of as cognitively enriching activities. By undertaking cognitive enriching activities, people can improve the efficiency of their neural networks and this in turn can help to stave off cognitive decline.

We have also come to realise that certain lifestyle habits can significantly impact on brain health. For example:

• Regular exercise has been shown to offset age related cognitive decline;

• Quitting smoking is known to slow brain volume loss in MS;

• Taking medication as prescribed is important;• Managing psychological stress can be an effective

way to protect brain health. Regular stress management training has been shown to reduce the incidence of new brain lesions in MS patients.

Overall, cognitive decline is not an inevitable feature of MS. It is important to make your physical and mental health a priority. The importance of a healthy, intellectually stimulating lifestyle should not be underestimated. Talk to your healthcare team if you have any concerns.

THE INCREDIBLE HUMAN BRAIN

Further Information: Trinity NEIL project www.tcd.ie/neuroscience/neil

Hello Brain www.hellobrain.eu

Beaumont Hospital Mindfulness and Relaxation Centre www.beaumont.ie/marc

Authors:• Fiona O’Donovan is a PhD Candidate in the RCSI and

Beaumont Hospital• Prof. Alice Stanton is Professor of Cardiovascular

Therapeutics at the RCSI• Prof Niall Pender is Principal Neuropsychologist at

Beaumont Hospital, Dublin

www.ms-society.ie 8

References1. Rocca MA et al. Neuroimage 2003;18:847–55. 2. Rocca MA, Filippi M. J Neuroimaging 2007;17 Suppl 1:s36–41. 3. Barkhof F et al. AJR Am J Roentgenol 1992;159:1041–7. 4. Kappos L et al. Lancet 1999;353:964–9. 5. Filippi M, Rocca MA. J Neurol 2005;252 Suppl 5:16–24. 6. Polman CH et al. Ann Neurol 2011;69:292–302. 7. Marrie RA et al. Neurology 2005;65:1066–70. 8. Runia TF et al. Eur J Neurol 2013;20:1510–16. 9. Giovannoni G et al. Brain health: time matters in multiple sclerosis. 2015;doi:10.21305/MSBH.001

Keep as active as you can

Keep your weight under control

Keep your mind active

Avoid smoking

Watch how much you drink

Continue taking other medicines your doctor has prescribed

Figure. Six ways to lead a brain-healthy lifestyle

Maximizing lifelong brain health in multiple sclerosis

The importance of early diagnosis and treatment

Gavin Giovannoni, Queen Mary University of London

Having a healthy brain that functions well is important for people with MS. Everyone can take positive steps to keep their brain as healthy as possible, no matter what their health status. Taking positive steps sooner rather than later can help to improve long-term outcomes in people with MS.

The brain is a remarkably flexible organ. When learning new skills, such as speaking a foreign language or playing a musical instrument, it can recruit new areas to use for these tasks. In a similar way, if a part of the brain has been damaged, new areas can be recruited to perform the tasks previously performed by the damaged area.1,2

This capacity of the brain to adapt to an insult is known as the neurological reserve, and it is the reason why damage caused by MS does not always result in a relapse or worsening symptoms. Research has shown that only about one in 10 lesions leads to a relapse 3,4 and that other, less noticeable, damage can also be ongoing while someone is feeling well.5 However, the brain uses up some of its neurological reserve every time it compensates for damage. If its neurological reserve in a particular system is used up, for example the lower limbs, the brain can no longer recruit new areas to compensate, so the symptoms of MS are more likely to manifest as progressive disease. Prompt diagnosis of MS is important so that positive action can be taken to minimise damage to the brain, maintain the neurological reserve and delay or prevent the development of progressive MS.

Doctors can now diagnose MS earlier than ever beforeThanks to evidence from MRI brain scans, people with MS are now diagnosed about 10 times more quickly than in the early 1980s. 6,7 About one in five people who have had a single relapse can receive a firm diagnosis from their first MRI scans. 8 A prompt diagnosis means that someone with MS and their healthcare professionals can start to treat and manage the disease as early as possible.

Early treatment can improve outcomes in MSIn people with relapsing forms of MS, disease-modifying therapies (DMTs) can help to protect the neurological reserve by preventing some of the damage caused by MS. Evidence from long-term studies shows that starting treatment with a DMT early is associated with better

B R A I N H E A LT H

long-term outcomes than delaying treatment. 9 Early treatment with an appropriate DMT may reduce the number of relapses and new brain lesions as well as slow brain tissue loss and disability progression. 9

You can play an active role in treatment and lifestyle decisionsI encourage everyone with MS to participate actively in all decisions about their treatment. Ask your healthcare professionals to explain clearly the different options available to you, taking into account your treatment goals, values, needs, lifestyle and likely disease course.

Taking positive steps to maximise lifelong brain health means embracing a brain-healthy lifestyle (see figure). This includes staying physically active, maintaining a healthy weight, reading or engaging in other hobbies that keep the mind active, avoiding smoking, limiting alcohol intake and taking medications prescribed for any other conditions (www.msbrainhealth.org/article/six-ways-to-lead-a-brain-healthy-lifestyle). By factoring brain health into their lifestyle and treatment choices, people with MS – at any stage of the disease – can make decisions now that can positively influence their future.To learn more about how you can look after your brain health, visit www.msbrainhealth.org

Preparation of this article, as part of the MS Brain Health initiative, has been funded by grants from AbbVie, Actelion Pharmaceuticals and Sanofi Genzyme and by educational grants from Biogen, F. Hoffmann-La Roche, Merck Serono and Novartis, all of whom had no influence on the content. Support for the independent writing and editing of this article was provided by OxfordPharmaGenesis Ltd.

Professor Gavin Giovannoni is speaking at our Healthcare Professionals Day and our National Conference on 23rd and 24th September. See pages 16 and 17 for more information.

www.ms-society.ie9

Opening of the National MS Care CentreThe Care Centre opened in 1989 and remains the only dedicated respite facility for people with MS in Ireland in 2016.

Rehabilitation in Multiple Sclerosis and Rehabilitation of the Young Disabled: A Nurse’s Viewpoint

Retroviruses and Multiple SclerosisThis is an area that is still currently being researched, with recent speculation that antiretroviral drugs used to treat HIV may also be used to treat MS.

Sodium Channels – What is Their Role in MS?

1 0 0 t h I S S U E R E F L E C T I O N

International Year of the Disabled

Developments in the MS SocietyThe appointment of two new community workers – one to cover Galway, Clare, Limerick, Kerry and Cork and one to cover Donegal, Leitrim, Sligo, Mayo and Roscommon.

Campaign for Postal Votes

PromisesAn analysis of the National Understanding for Economic and Social Development, a government strategy released in 1979.

UN Declares on Rights of the DisabledThe 1975 UN Declaration on the Rights of the Disabled, printed in full.

Residential Care Project LaunchedThe results of a survey on the housing adaptation grant system. Results of the survey indicated a strong level of dissatisfaction with the current system:

“Many members used the questionnaire as an opportunity to air their views on the present grant system; being a family newspaper we refrain from printing them”.

Another quote from this piece which remains sadly all too relevant in 2016:

“An area of particular interest to many MS families is the area of hospital/institutional care. The tragedy of young people with MS being placed in geriatric units, county homes and other institutions where they are so totally out of place needs to be tackled urgently”.

Issue 1 – 1980

Issue 25 – 1989

This is the 100th issue of MS News. It is fair to say that a lot has changed since the publication of our first issue in December 1980, both for MS Ireland as an organisation and in the general MS landscape.

Here we look back at the 1st, 25th, 50th and 75th issues of MS News and consider some key milestones to see how far we have come since 1980.

www.ms-society.ie 10

The Brendan VoyageA personal reflection from the then Chairman of MS Ire-land, Brendan Kenna, on his life with MS.

Knocking Down the BarriersA report by an MS Ireland member on the work of the Commission on the Status of People with Disabilities. The author notes:

“The picture that emerged was one of a society which excludes people with disabilities from almost every aspect of economic, social, political and cultural life. People with disabilities and their families made it clear that they want equality, that they want to move from a reliance on charity towards establishing basic rights”.

With the UN Convention on the Rights of Persons with Disabilities still not ratified and as the Disability Federation’s recent Disable Inequality campaign showed, there is still a lot of work to be done 20 years later.

Revealing the FactsResults of a major survey of people with MS in Cork and Kerry.

Out of Reach, Out of TouchPerson with MS Anne-Marie McCarthy writes about problems of accessibility in public places and recent changes to the Disabled Persons Allowance payments.

The Tysabri StoryA piece on the withdrawal of Tysabri following two trial patients being diagnosed with the rare condition PML. Marketing of Tysabri was resumed in 2006 after the development of a comprehensive risk-minimisation programme. Tysabri received a license for use in Ireland the same year.

Multiple Sclerosis and DietAdvice from a dietician and a comprehensive diet fact sheet.

Primary Progressive Multiple SclerosisInformation piece by Consultant Neurologist Dr Stanley Hawkins on primary progressive MS. The article notes that PPMS is under-researched and no treatments existed at the time.

The establishment of the International Progressive MS Alliance in 2012 marked a huge step forward for research into progressive forms of MS and in 2016 we learned of the arrival of the first medication indicated for primary progressive MS – Ocrelizumab.

1 0 0 t h I S S U E R E F L E C T I O N

Issue 25 – 1989

Issue 50 – 1996

Issue 75 – 2005

1980 1989 2005 2016

No licensed medications for MSNo licensed medications for MS3 licensed medications for MS12 licensed medications for MS

38 MS Ireland branchesIn

1980In

201624 MS Ireland branches

In 1981 of people with MS were workingIn 2016of people with MS are working

1989 – Establishment of Care Centre1990 – Establishment of Information Line1998 – Website launched

www.ms-society.ie11

C O N F E R E N C E R E P O R T

The European Multiple Sclerosis Platform (EMSP) held their 2016 conference in Oslo from 17th-18th May. The theme was ‘Growing With MS’ and the event brought together people with MS and delegates from MS societies all over Europe. I was delighted to be able to attend on behalf of MS Ireland and below I present a summary of a very exciting and inspiring two days.

DAY 1

After a welcome from EMSP President Anne Winslow, we were given an overview of the Norwegian MS Society, who are celebrating 50 years this year. Then Eva Havrdova from Charles University in Prague gave an historical overview of MS diagnosis and treatment and looked at where we are now in terms of current treatment options and best practice. She also made the point that patient registries are vital in learning how best to treat MS – something we still lack in Ireland. Pasquale Calabrese from the University of Basel spoke about the unmet psychosocial needs of people with MS. He argued that the medical profession needs to adopt a ‘biopsychosocial’ model when treating MS so that the different social, emotional and cognitive challenges that the disease presents at different stages are adequately accounted for.

Then Emma Rogan, Project Co-ordinator with EMSP, gave an update on EMSP’s employment projects. EMSP believe that “Workability” should become a priority outcome for clinical care and that an attitudinal shift is required away from the “sick note” and towards a “fit note” whereby the focus is on what people can do, not on what they can’t do.

After a coffee break, there were a series of short presentations starting with Gisela Kobalt, President of European Health Economics, on how to conduct a cost of illness study. These studies (such as MS Ireland’s ‘Societal Costs of MS’) are hugely valuable for policy makers. This was followed by Jean Mossman from the London School of Economics on IMPRESS, an international multiple sclerosis study that found major variations between countries on the costs associated with MS and quality of life for people with MS. In the study, Germany reported

the best outcomes and Romania the worst. The factors identified as having the most impact on quality of life were fatigue and mobility. After Jean, Vinciane Quoidbach from the European Brain Council presented on a project which aimed to assess the socio-economic impact of interventions and provide evidence and tools to assist policy makers. Then Anthony Barron from Charles Rivers Associates looked at varying access to disease modifying therapies (DMTs) across Europe and the factors that influence access including budgetary pressures, limited availability of neurologists and lack of co-ordinated multi-disciplinary care.

The final section of the day explored various studies that have sought to better understand people with MS’s needs and perspectives, starting with the State of MS study by Biogen which looked at patient-physician communication and treatment expectations among people with MS. Key findings here were that people with MS find it very difficult to talk about sensitive hidden symptoms such as bladder problems and sexual difficulties and that the most common communication challenge for neurologists is time pressure. Also, the study found that people that had input into their treatment decisions were more likely to be satisfied with their DMT treatments. Then Elisabeth Kaslingam from EMSP presented findings from the MS Barometer survey which identified several key areas for improvement in the experiences of people with MS including access to treatments and need for MS specialised healthcare centres. The third study presented was the Global MS Consumer Survey by Novartis which examined understanding of MS in the general populace. The findings were that there are low levels of perception of MS symptoms among the general public – for example, 52% of respondents thought that people with MS must be in a wheelchair. Finally, Genzyme’s vs.MS study surveyed 1000 people living with relapsing-remitting MS and 500 care partners. The goal of the study was a better understanding of the physical and emotional impact of MS. The study identified four main needs: need for information and acceptance, need for support, need for private disclosure and need for openness.

The day closed with a very inspiring presentation from MS advocate Lori Schneider, the first person with MS to climb Mount Everest, followed by a display of Norwegian folk dancing and a networking dinner.

European Multiple Sclerosis Platform Spring Conference 2016

By Harriet Doig Information, Advocacy and Research Officer

www.ms-society.ie 12

C O N F E R E N C E R E P O R T

DAY 2

Day 2 opened with the key note address from Brent Hoie, Norway’s Minister for Health. He described some of the recent developments in Norwegian healthcare policy such as the preparation of a status report on neurological conditions which will inform a national brain health strategy and the promotion of new therapies including a clinical trial into stem cell treatments. Then Hanne Harbo from Oslo University Hospital presented on mapping genetic risk factors in MS. An International MS Genetics Consortium has now been established and they recently conducted a study on 35,000 MS patients and 50,000 healthy controls which looked at the epigenetics of MS – this means exploring the environmental factors that may turn certain genes on or off and thereby increase or decrease the risk of developing MS.

There followed a presentation on paediatric MS by Rogier Hintzen, head of the ErasMS MS Centre. He explained that MS in children takes a very different course to in adults – for example, transition to secondary progressive MS tends to come later in the disease course in children than it does in adults but the relapse rate is three times higher in children.

Before the mid-morning break there was a session on the invisible facets of MS and everyday challenges, from five different perspectives – a clinician, two people with MS including a young person, a psychologist and an MS Nurse. Key discussion points raised include the need for clinicians to develop a ‘risk calculator’ which can calculate the risk of progression, the difficulties of disclosing MS to a partner in a relationship, the need for clinicians to routinely administer cognitive screenings, how to keep people with MS engaging regularly with medical services and the various challenges that may inhibit this engagement, and the problem of not being

able to get insurance after an MS diagnosis. After coffee the conference was split into three parallel sessions. I attended a workshop on how EMSP can improve communications between organisations and to people with MS across Europe.

After lunch, Peer Baneke, CEO of the MS International Federation, chaired a panel discussion on paediatric MS, including a perspective from a parent of a child who was diagnosed with MS aged 11. Then Bernie Porter, MS Nurse Consultant from the NHS Foundation Trust, talked about the need for MS Nurses to have a role as leaders and champions of good practice in MS care and how they should be able to provide training for other healthcare professionals on managing MS symptoms. Then Yves Brand from EMSP followed this up by presenting on the EMSP MS Nurse project and future plans for developing it further. We were then treated to a hugely powerful talk by Steinar Arset, a teacher and adventurer, who walked, cycled, skied and sledded the length or Norway following his MS diagnosis. Steinar received a very well deserved standing ovation.

The final session of the conference was on rehabilitation. Tone Beiske described the Norwegian model of neurorehabilitation for MS which is highly specialised with a cognitive and vocational focus, combined with symptomatic treatment. Since 2001, every person with MS in Norway has had the statutory right to an individual rehabilitation plan that outlines their objectives and the resources and services they require to achieve them. This was a very sobering reminder of just what we lack in Ireland in terms of neurorehabilitation.

Anne Winslow from EMSP then closed the conference. A huge thank-you to EMSP for organising such a fascinating and thought-provoking event!

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Happy Retirement to Niamh Sweeney!

Niamh Sweeney, Support Services Manager at the Care Centre, retired in May after 25 years. MS Ireland would like to sincerely thank Niamh for her dedication and hard work over the years and wish her well in her retirement.

Niamh Sweeney (right) with Olga Estridge, Services Manager (left) and Margaret Maguire, Clinical Nurse Manager (Centre).

Niamh Sweeney (left) and Ann McNamara, CE Supervisor.

C O N F E R E N C E R E P O R T

Report from EMSP’s Young People with MS Conference

By Laura LeeI was extremely fortunate to have the opportunity to attend The European Multiple Sclerosis Platform’s ‘Young People’s Conference’ in Oslo, Norway this year. The event facilitated young people from all corners of Europe gathering to discuss our experiences of life with MS, to share tips and best

practices, and to form connections with other young MSers. The theme of “readjustment” was central to the event, and all young people present spoke about the ways in which our diagnoses have led to personal readjustment.

The day was structured so that participants engaged in small group discussion, facilitated by Emma Rogan and Elisabeth Kasilingam of the EMSP. A huge range of topics were covered on the day; we shared our personal methods of maintaining wellbeing, discussed the importance of mental health, and learned what life is like for people with MS in various European countries. Some of the take-home points from the day include:

• Adequate sleep, exercise, a balanced diet, and stress management were voiced by many participants as methods of maintaining physical and mental wellbeing.

• Support offered to those living with MS varied drastically within countries, in terms of information and treatment available, work and education accommodations, and cultural acceptance of illness.

• Participants acknowledged the value of a centralised national MS society, as a source of reliable resources, support and advocacy work.

Connecting with other young MSers was an opportunity I am extremely grateful for. It was incredibly motivating to be surrounded by other young MSers, all highly driven to maintain their wellbeing, and to reducing the stigma of illness. I found the sharing of our stories to be an incredibly affirming experience, and this seemed to be the case for the group at large. I returned home feeling rejuvenated and inspired, not only by my fellow young people, but from having witnessed some of the incredible work being done around the world to support people living with MS. It was an event I will remember for quite some time to come!

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M Y S T O R Y

Grace KavanaghMy Story

So it’s our 10-year anniversary this year – I won’t say it’s been easy, we haven’t always got on but we seem to have found a level that works for us at the moment, that is until our next big falling out and there have been a few! I’m speaking of course of my relationship with MS, 10 years ago in August I was diagnosed with relapsing remitting MS. To be honest my diagnosis left me numb, which is ironic as that was my first symptom too, I didn’t know much about MS or what to expect so I bought a book and took it from there. I was working in the UK when diagnosed and didn’t find much support at the time, but that was fine with me as I mostly pretended it wasn’t happening.

My numbness quickly progressed to difficulties with walking and 10 years down the road pretending MS is not an issue isn’t an option anymore. It’s certainly not all doom and gloom though as I returned to Ireland a few years ago so am surrounded by family and friends who can’t do enough for me and I am gradually learning to let them! Just because they want to help doesn’t mean I’m a burden – it has taken a lot of mindfulness practice for me to be able to say that and mean it!

Also after several tries my care team and I have found the right drug for me which thankfully no longer involves injections and my MRIs have been stable recently. I have regular physiotherapy and support from my Occupational Therapist and MS Nurse. I attend weekly yoga classes at the MS Care Centre, which is just the friendliest group. So from being someone who hid MS at all costs I no longer feel the need to hide.

My 10 years with MS has involved lots of changes, moving home from the UK, getting married, going to Hawaii with my sisters, decreased mobility and lots of drugs to mention a few. Some changes I have enjoyed, others I have not, some I have stuck with and others I really should go back to, like my healthy diet, but no one is good all the time.

I have retrained twice since my diagnosis. Firstly, I trained as an adult learning tutor in computing and have had a lot of fun volunteering to help get older people online. Most recently I studied for a Post Graduate Diploma in Digital Marketing thanks to the scholarship offered by the Digital Marketing Institute via MS Ireland. I really enjoy learning and would happily study for the rest of my life. I completed the course and graduated so it is nice to get a reminder that MS and my mobility issues haven’t changed me completely. I am still me, I am still capable of a lot of things and life can still be fun and fulfilling, it just takes more work and consideration than it used to.

We’d like to share more stories like Grace’s in MS News! If you would be happy to share your stories and experiences about living with MS please get in touch

with Harriet on 01 678 1600 or by email to harrietd@ms-society.ie

The University of Limerick were to host their first World MS Day event on 25th May.

The MS Research Team at UL is a multidisciplinary group that aims to enhance the lives of people with MS through research and education. The team has been working in close collaboration with MS Ireland over the past five years. To mark World MS Day 2016 and five years of partnership with MS Ireland, UL hosted both a “9000 Steps for MS” fundraiser and a research event to showcase a selection of the research projects MS Ireland has funded and collaborated with UL on over the past five years.

Our celebrations began Wednesday morning with friends, loved ones and co-workers teaming up to take on our 9,000 Steps for MS challenge. Former Munster and Ireland rugby player, Jerry Flannery happily launched our walk across a sunny UL campus! Our walk was a great success, raising €1,500 for physiotherapy and exercise services in the Mid-West.

After lunch, the MS Research Team was joined by Dr. Una Fitzgerald, NUIG and Peter Carney, Health Economist, Novartis to present a series of talks and poster presentations.

We would like to thank everyone who participated and contributed to make Wednesday 25th May a successful and enjoyable day for all!

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C O N F E R E N C E

LIVING WELL WITH MULTIPLE SCLEROSISConference

National Conference 2016Saturday 24th September

Cork International HotelAirport Business Park, Co. Cork

Programme is as follows: Conference fee €20 includes lunch9.00 Registration Tea & Coffee9.45 Opening address Ava Battles CE MS Ireland

10.00

Professor Gavin Giovannoni: Professor of Neurology at the Centre for Neuroscience and Trauma, Blizard Institute Barts and The London School of Medicine and Dentistry MS Healthy Brain and Time Matters

10.45Dr. Brian Sweeney: Consultant Neurologist, University College Hospital Cork Current and Emerging Treatments

11.30 Comfort Break

11.45

11.45 Workshop 1A) Elaine King: Biodynamic and Integrative Psychotherapist - Minding Relationships and Promoting Good CommunicationB) Trish O Sullivan: Senior Physiotherapist HSE Cork - Exercise and its Relationship with Brain Health

12.45 Lunch

14.00

Workshop 2A) Emer Duffy: Specialist Occupational Therapist - Tech & Non Tech Ways to Train your BrainB) Harriet Doig: MSI Claire Dolan: Occupational TherapistEmployment Matters in MS

15.00

Professor Sabina Brennan: Institute of Neuroscience Trinity College Dublin Strategies for Better Brain Health

16.00 Finishing up with a Drumming Workshop

MS Ireland will have its Council meeting at 15.00 and AGM and National Awards at 16.30 for all MS Ireland members. There will be entertainment

organised in the hotel on the Friday night for those staying the night before. There will be music in the hotel bar from 10pm

The Multiple Sclerosis Society of Ireland (MS Ireland) are hosting our Living Well with MS Conference and AGM in the Cork International Hotel, Airport Business Park, Co Cork on Saturday 24th of September 2016.

“Multiple Sclerosis has a profound personal, social and economic impact. But better outcomes for people with MS and those who care for them can be achieved.” (Professor Gavin Giovannoni)

The theme of this years Information Day is Brain Health and its Relationship to Multiple Sclerosis. The brain is a remarkably flexible organ. If Multiple Sclerosis (MS) disease activity damages tissue in one area, other areas can work harder to compensate. This extra capacity is known as ‘neurological reserve’, or ‘brain health’, and explains why disease activity may go undetected during the early phase of MS. Indeed, cognitive problems may develop before more obvious symptoms of MS appear – sometimes years earlier. MS disease activity may continue ‘below the surface’ even when someone is feeling well. Research has shown that, on average, only about one in 10 lesions (areas of acute damage) leads to a relapse. In addition, other low-grade tissue damage can also be ongoing.

Accommodation bookings are the sole responsibility of the meeting attendee(s). Early booking is advisable!

For those of you who may require accommodation the Cork International Hotel (021 4549800) has 5 wheelchair accessible bedrooms Quote MS Ireland for best rates.

Cork Airport Hotel (021 4947500) has 2 wheelchair accessible bedrooms (in the Airport Business complex 4 min drive) Quote MS Ireland for best rates.

The Cork Airport Travel Lodge (021 4310722) has 3 Wheelchair accessible rooms (1 mile from conference venue).

Maryborough Hotel (021 4365555) has 5 wheelchair accessible bedroom (10 min drive to conference venue).

Rochestown Park Hotel (021 4890800) have 3 wheelchair accessible bedrooms (10 min drive to conference venue).

This means that neurological reserve can be depleted even during periods of remission if disease activity is not kept under control.

Brain health should be valued highly, as it helps people to maintain a good quality of life as they age.

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C O N F E R E N C E

LIVING WELL WITH MULTIPLE SCLEROSISConference

Have you enclosed €20? (please tick) Early booking is advisable as places are limited.Cheques should be made payable to MS Ireland.

** Have you selected your workshops?

Morning Workshop 11.45 (please select one workshop)

Afternoon Workshop 14.00 (please select one workshop)

Minding Relationships andPromoting Good Communication

Tech & Non Tech Ways to Train Your Brain

Exercise and its Relationship with Brain Health

Employment Matters in MS

Please note that MS Ireland will have its Council meeting at 15.00 and AGM and National Awards at 16.30 for all MS Ireland members.

Return completed forms to:

MS Ireland, Western Regional Office Curragrean, Merlin Park Galway - 091 768630 or western@ms-society.ieby Wednesday the 14th of September

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T R E AT M E N T S

Treatments updates

Fampyra Multiple Sclerosis Ireland welcomed the news that the HSE are now reimbursing Fampyra or Fampridine in cases where people with MS “satisfy a responder protocol” and have been prescribed the drug by a neurologist. Fampyra, an oral drug used for the symptomatic treatment of walking impairment in adults with MS was made available under the HSE General Medical Services (GMS) Scheme from 1st October 2015.

MS Ireland wrote to John Hennessey, Director of Primary Care in the HSE, to ask that clarity be provided around the process for neurologists to register people as responders as it became increasingly clear that there was confusion with the system and exactly what information is required. In some instances, reimbursement may have been held up by something as simple as the neurologist not having the person’s Long Term Illness Number to hand. These confusions had been causing delays in people who had been receiving Fampyra and paying for it themselves prior to October 2015 being registered as responders and receiving reimbursement. MS Ireland met with Mr Hennessey and other staff from the HSE on this issue in May, and we were invited to produce an FAQ document to help people with MS to understand and navigate the process. We are currently working on this document and hope to make it available shortly.

MS Ireland would like to thank all of the people with MS and their families and friends who campaigned tirelessly for the reimbursement of Fampyra. In particular we would like to acknowledge the incredible work of Rosaleen Rafter (pictured above with Minister Leo Varadkar at the launch of the Access to Medicines Campaign Handbook, second from left). Rosaleen and her family ran a high-profile social media campaign and spoke to the media on several occasions. Thank you Rosaleen!

SativexMS Ireland wrote to the then Minister for Health, Leo Varadkar, in January requesting that Sativex be reimbursed by the HSE. We followed this up with another letter to the new Minister for Health, Simon Harris, after the General Election in February. We currently await a response.

VHI and LemtradaMS Ireland warmly welcomes the news that VHI has now included Lemtrada (Alemtuzumab) in the specified drug section of the Schedule of Benefits for Private Hospital Service, for admissions on or after 1st June 2016.

This means that VHI Insurance will provide reimbursement for Lemtrada subject to the rules, terms and conditions of VHI membership.

OcrelizumabNew medication for progressive MS on the horizon

Ocrelizumab is a new medication which has recently been shown in three large phase-three clinical trials to have beneficial effects in both relapsing-remitting and primary progressive MS. This medication is currently undergoing the process of licensing in Europe and if successful in getting a license, it would then require further approval for reimbursement in Ireland so it will not be available from your neurologist until mid- 2017 at the earliest. Until the drug has been given a license (so it can be prescribed) we will not know what groups of people with MS will be approved to receive this medicine.

A huge thank-you to the South Dublin branch who donated €5,000 to the International Progressive

MS Alliance, for research into treatments for progressive MS.

MS Ireland is planning further advocacy work on Sativex. If you have been affected by the lack of availability of Sativex and would be prepared to share your story, please contact Harriet in complete confidence on 01 678 1600 or at harrietd@ms-society.ie

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T R E AT M E N T S

Biologics and Biosimilars

IPPOSI Chief Executive Derick Mitchell with the Biologics and Biosimilars outcome report

IPPOSI (The Irish Platform for Patients’ Organisations, Science and Industry) have produced an outcome report from an IPPOSI-organised seminar on biologics and biosimilars. Biosimilar medicines are likely to have an increasing impact on MS treatment in the future, so here we explain a bit about biologic and biosimilar medicines, how they work and what key issues people with MS should be aware of.

What is a biological medicine?A biological medicine contains an active substance that is made by a biological process, such as a hormone. Unlike chemically based drugs, biologic medicines have the unique ability to target the underlying cause of a disease, making them particularly effective in treating autoimmune diseases such as MS.1 Tysabri and Betaferon are both examples of biological medicines.

What is a biosimilar medicine?A biosimilar is a biological medicine that is highly similar to another biological medicine (reference medicine) which already has a marketing authorisation and has been approved for use in patients. As such, biosimilars contain a version of the active substance of an approved biological medicine and generally should be used in the same way.2 When the patent for a biological medicine expires, biosimilar medicines can be brought to the market.

Switching, Substitution and Indication Extrapolation – what do these terms mean in prescribing practice?

1. Switching / Interchangeability – the medical practice (by a prescriber) of changing one medicine for another that is expected to achieve the same clinical effect in patients who are undergoing treatment.

2. Substitution – the practice of dispensing one medicine instead of another equivalent and interchangeable medicine at the pharmacy level without consulting the

prescriber.

3. Indication Extrapolation - where a biosimilar is approved for use in the same indications (diseases) as the originator drug, even without clinical data of its efficacy and safety in the disease.3

What are the potential benefits of using biosimilars?Biosimilars tend to be cheaper than their reference products. Therefore, if their use is more widely adopted, this could in theory mean that cost savings lead to a wider distribution of scarce resources especially in developing countries were people with MS may not be able to access many of the drugs we have in Ireland. IPPOSI’s outcome report gives an example from an Irritable Bowel Disorder unit in Norway, where increased use of biosimilars resulted in substantial cost savings that were then redirected back into employing an additional consultant and additional specialist nurse.4

What are the potential risks and drawbacks?One of the reasons that biosimilars are cheaper than the reference medicines to bring to market is that they can be approved for use without clinical data on their efficacy and safety – this is called ‘Indication Extrapolation’ (see above). Therefore some prescribers still have concerns about the long-term outcomes for patients including how effective the drugs are and the potential for new, unknown side effects to emerge. Close follow-up is therefore required if a patient is prescribed a biosimilar.5

Are biosimilars currently in use for MS?There are not currently any licensed biosimilars on the market for MS; however with the patents of a number of MS drugs (including Avonex) due to expire soon, it is highly likely that biosimilars will form a part of MS treatment practice in years to come.6

1. http://multiplesclerosisnewstoday.com/2015/03/03/new-white-educates-ms-autoimmune-disease-patients-biosimilars/ 2. https://www.hpra.ie/docs/default-source/publications-forms/guidance-documents/guide-to-biosimilars-for-healthcare-professionals-and-patients-v2.pdf?sfvrsn=18 3. http://www.ipposi.ie/images/Biologics__Biosimilars_Outcome_Report_May_2016.pdf 4. http://www.ipposi.ie/images/Biologics__Biosimilars_Outcome_Report_May_2016.pdf 5. http://www.ipposi.ie/images/Biologics__Biosimilars_Outcome_Report_May_2016.pdf 6. http://mymsaa.org/publications/motivator/winter-spring14/feature-story/

The full report from IPPOSI can be downloaded here:www.ipposi.ie/images/Biologics__Biosimilars_Outcome_Report_May_2016.pdf

The other outputs from the IPPOSI seminar are available here: http://bit.ly/29Pcx8f

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R E G I O N S

Regions ShowcaseIn this issue, we look at the Western region (Galway, Roscommon and Mayo).

GalwayRegional Co-ordinatorAidan LarkinMobile: 087 250 0726Email: aidanl@ms-society.ie

Regional Community WorkerJohn MacDonald Mobile: 087 250 2009Email: johnm@ms-society.ie

Solas Supervisor Kevin LarkinEmail: kevinl@ms-society.ie

Administrator/Clerical Resource Worker Tina Lally Email: western@ms-society.ie

NeurophysiotherapistDr. Marcin UszynskiTel: 091 768 630

MayoRegional Community Worker Mags RyanMobile: 087 250 2031Email: magsr@ms-society.ie

If you would like to get in touch with a Regional Community Worker or get involved in any of the groups or programmes mentioned, please contact your local office.

Case Work

115Total number of outward referrals made from January 2016 to June 2016

359Total number of Clients helped 1-to-1 from January 2016 to June 2016

710Total number of PwMS on Western Region Database

Community Employment (CE) ProjectThe MS Ireland CE Project is funded by the Department of Social Protection. Currently courses are run by the Western Regional Office to FETAC Level 5. Courses include Physio-Assistant, Patient Moving & Handling, Health & Safety, First Aid, Hydro-therapy and Child Protection.

16 CE Participants cover a vast geographical area – Galway, Mayo and Roscommon. Each team member strives to support and assist in the care of persons with MS, either as part of a weekly physio class or by visitation in their own home. The primary role is in the support of physiotherapy directed activity. The Team provides on average 42 individual sessions of physio per week.

Neurophysiotherapy ServiceWith the support of the local Branches, the HSE and donations, the Western Regional Office has a Neurophysiotherapy service directed by Dr. Marcin Uszynski with the support of physiotherapy assistants from our CE Project. Physio classes are run by the Western Regional Office in Ballinalsoe, Clifden, Galway, Loughrea, Tuam, Ballina, Castlebar, Ballinrobe, Roscommon and Boyle. Each participant receives an assessment from the Neurophysiotherapist and a programme is discussed with them. Post assessment individuals can join one of the MS dedicated classes

MS Ireland physiotherapists and members of the neurophysiotherapy group

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Newly Diagnosed Programme This is a one day workshop offering people who are recently diagnosed with MS and their partners/families an opportunity to explore the impact of the diagnosis, to learn about the disease and to become familiar with the support services that are available. This is a regional programme and will be open to about 30 people.

Coffee Mornings A series of coffee mornings take place in Galway, Clifden and Tuam organised by a volunteer with MS, five times per year. This is a great opportunity of people with MS to meet socially, network and share stories.

Regional Integrated MeetingsUnder the Integrated Model the regional workers and representatives of the five Branches in the Region get together three times a year to review the work in the Region, to plan services and programmes for people with MS in line with the available resources.

Counselling

The Western Region receives some funding for the delivery of a limited counselling service where people with MS and/or family members can avail of up to six sessions with an accredited psychotherapist.

R E G I O N S

18Symptom Management Programmes

DIY/Maintenance Projects

Pilates Classes

which are delivered by physiotherapy assistants under the supervision of the Neurophysiotherapist or go to their local gym or fitness centre with guidance from the Neurophysiotherapist.

The Western Regional Office is exploring the use of Functional Electrical Stimulation (FES) as an aid to offer people with MS who present with dropped foot. Individuals can come to the Western Regional Office and work with the team to improve their walking. This device is not readily available through the HSE and due to the costs involved is out of the reach of many individuals for whom this would benefit. Our goal would be to collect data to demonstrate its effect over time and advocate to the HSE for its inclusion in the aids and appliances budget.

The Western Region are delighted to host three Physiotherapy Erasmus students from Poland who will join the team for three months from July to September 2016, offering some intensive physiotherapy and documenting its benefits over a prescribed time period. As part of out physiotherapy programme we also offer block sessions of yoga and hydrotherapy.

Cognitive NeurorehabilitationWith the support of Galway Rehab Care and the HSE, the Western Regional Office offers a Cognitive Rehabilitation Service. This particular service is currently limited to Galway. This service focuses on the management of cognitive difficulties and focuses on either remedial strategies or on the development of compensatory strategies. An assessment is carried out by the Rehab Team to identify the specific areas of difficulty, and a therapeutic plan is developed. Areas that will be addressed include the following (this is not an exhaustive list): memory, attention and concentration, planning, visual spatial information, fatigue management, effective communication, gaining awareness about the impact of MS, management of anxiety, stress and depression. Cognitive impairment will also be addressed in relation to its effect on the individual’s life (i.e. work, home, education etc.)

Young Persons ProjectDelphi Adventure Centre is an annual event aimed at approximately 20 young people between the ages of 10 and 16 years who have a parent with MS. It is designed to create a relaxed environment in a social setting for young people to express fears and concerns and share their experiences around MS with each other. It is hoped to also give young people a break from the caring role they find themselves in.

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11

Between January 2016 and June 2016, the Western Regional Office also carried out:

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I N F O R M AT I O N L I N E

MS Information LineBy Chris Gill

Background

• Established in 1990• Deals with enquiries by phone, email, social media,

letter and sometimes in person from people living with MS, their friends, families and work colleagues

• Also available to health professionals, students and employers and anyone else affected by MS

• Open from 10 am -2 pm Monday to Friday• Calls outside of these hours are diverted to a message

service and returned the following day

Why does the Information Line exist?

• The primary objective is to support people affected by MS including people with MS and their families, friends and carers, through difficult times and to provide them with impartial information and guidance

• We are also a referral point for MS Ireland’s other services such as the nationwide team of community workers and branches, and to other organisations

When do people call?

• When they are newly diagnosed • When people are having difficulty in discussing their

situation with family members or friends and work colleagues

• When they are feeling isolated and depressed • When they need advice on practical issues such as

entitlements

• When family members, friends or work colleagues need advice and information

• When health professionals need advice, information or referrals

What are the regular issues that people call about?

• General information on MS and the treatment of MS • Questions about medications used in treatment and

management of MS symptoms• Dietary information • Availability of therapies associated with the

management of MS symptoms • All areas related to transport and accessibility

including disabled holidays and insurance • Continence advice• Housing and welfare entitlements • MS and the workplace • Respite and residential care

Most importantly, we are just there to listen.

Information line administration

• Each call is logged by date and number and time. As it is a confidential line no names or addresses are kept. The area the caller lives is also logged where possible so that we can identify if there are common issues or problems in a particular area

• Whenever possible we try to gather as much information about the caller as possible in order to build up a relationship and minimise the distress callers may feel in having to repeat their story. We would also be conscious that some callers prefer to remain anonymous

• The reason for each call is also logged so that we ascertain what are the common issues affecting PwMS

• A record of calls from health professionals is kept

A typical call

Some calls last two minutes or less; others can last for anything up to an hour. It is important to give each caller the time and support they need. An example of such a call would be a newly diagnosed 26 year old girl, who has been on our website and read all the information and then, as quite often happens, rings to ask some questions and for support. This can be a very scary and lonely time for people and quite often it can be a while before they make the call so it is important to let them know you are there for them. Some typical questions that someone in this situation might ask:

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I N F O R M AT I O N L I N E

• Will I be able to continue to work? • When and how should I tell my partner and family? • Should I inform work? • Will it affect my career options? • What about marriage? Can I have children and will

they get MS? • Will I be able to go to Australia for a year? • Can I get travel/life insurance? • Should I continue to exercise?• Will I be able to drive?• Will I be in a wheelchair eventually?

These can be very frightening issues for a young person. As well as providing information on the practical issues, the Information Line also offers reassurance and a listening ear if the person is struggling to deal with the emotions that such questions and worries can bring up.

Other work

• Facebook posting – Tuesday Questions and Friday MS Quotes

• Keeping up with new developments and generally reading about any new issues.

The information line is not only there for people with MS and their families. We also play an important role in providing health professionals with the backup advice and support they need in working with people with MS.

You can get in touch with the MS Information Line by phone on 1850 233233 or by email to info@ms-society.ie. You can also send us messages with your queries via the MS Ireland Facebook and Twitter pages. We are there for you, to help with your queries or simply to listen.

Reasons for contact

General Information

Helpline support

Treatments

Entitlements and Services

Insurance

MS Information Line in numbers January to June 2016

Total contacts to the Information Line

Total645

Method of contact

The MS Information Line can be contacted on 1850 233 233

Monday to Friday 10am – 2pm

Social Media

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M Y M S M Y N E E D S

My MS My Needs

In May, MS Ireland conducted a major survey of the needs of people with MS. This was the first such survey of its kind and the intention is to repeat it every two years. The results of the survey will help us to plan our services and will inform our ongoing advocacy work.

We received 825 responses in total to the survey and a researcher is currently working on producing a full detailed report of the findings. In the meantime, below we share some of the key data that has emerged so far:

• 86% had seen their Neurologist in the last 12 months

• 38% had to wait between 6-12 months to see their Neurologist

• 73% receive support from a friend or family member. Only 12.8% of these receive Carer’s Allowance

• 17.5% would benefit from home adaptations but weren’t able to get them

• 31% were unemployed/retired due to MS

• 48% have a Medical Card

• 18.8% were advised to change treatment following an MRI scan

A huge thank you to everyone who took the time to complete the survey! MS Ireland has been able to conduct this research thanks to funding received from Biogen and Merck.

Carers Event

The North Dublin and Fingal Regional Office held an event for carers of people with MS on Saturday

18th June in the Carlton Hotel, Cloghran, during National Carers Week. The speaker was Dr Marian O’Flynn, Psychologist with the HSE. Dr. O’Flynn gave an excellent presentation to our carers. She highlighted the physical, social, emotional and financial impact of caring.

She spoke about the adjustments that take place when a person becomes a carer – the relationship changes and this involves letting go of the person you knew and adjusting to the new person. Because of the unpredictability of MS this adjustment is ongoing, with the level of supports needed fluctuating.

Carers come from all areas – spouses, children, parents, siblings. Research has highlighted that carers have a higher risk of physical and psychological illness than the general population. The reasons for this are many. Carers can feel isolated and are less likely to take care of themselves. The groups most at risk are women, minority groups and families on low incomes.

Dr. O’Flynn went on to highlight the signs and symptoms of stress and anxiety. She spoke about the need for carers to talk to someone about how they are feeling because this lessens their intensity. She also highlighted that carers do not have to tolerate inappropriate behaviour – illness is not an excuse for bad behaviour and bad behaviour needs to be challenged.

The main messages to carers were:

1. Take care of yourself, including your health2. Seek help if you need it and delegate when you can3. Build in breaks for yourself4. Talk early, listen carefully and talk often5. Avoid burnout6. Set boundaries – you don’t have to say ‘yes’ to

everything7. Be realistic about what you can and cannot do

The presentation was very well received and generated robust discussion.

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F U N D R A I S I N G

VHI Women’s Mini Marathon 2016Monday 6th June

Each year, thousands of women fill the streets of Dublin to take part in the Women’s Mini Marathon and raise money for their chosen charity. We were lucky enough to have nearly 300 wonderful women on Team MS Ireland this year and would like to take this opportunity to thank everyone who contributed to such an enjoyable day. Well done to all our participants!

Hair Raising Fundraising

A special mention to our fantastic fundraiser Catherine Hayes (Lahinch, Co. Clare) who took part in this year’s Mini Marathon for MS Ireland and raised a very impressive €4,675 from organising a ‘Hair Today, Gone Tomorrow’ fundraiser where she chopped 22 inches from her hair. The money raised will make a significant contribution to MS research- great job Catherine!

World MS Day 2016Wednesday 25th May

A huge thank you to everyone who supported this year’s World MS Day. You joined the global movement and helped raise awareness of MS around the world!

World MS Day 2016 has been and gone but it’s certainly not forgotten. This year, MS Ireland challenged everybody to walk 9,000 steps to represent the 9,000 people in Ireland living with MS.

Whether you joined us at Base Camp Outdoor Store in Dublin or the MS Research Showcase at the University of Limerick- please know we very much appreciate your support. We would also like to extend our thanks to those who completed 9,000 steps on their own or with family and friends and not forgetting the corporate groups who organised their own 9,000 steps event with their staff to mark World MS Day. This includes companies such as Daft.ie, Icon Gyms, Alkermes Pharma and GLG to name just a few. A big thank you to you all!

A big thank you to the team from GLG who came down to Base Camp on World MS Day and completed 9,000 steps on our treadmills instore.

Carol McNelis, Alkermes presents a cheque to Samantha Loughrey, MS Ireland for over €500 collected in their Dublin and Athlone branches in aid of World MS Day.

World MS Day at the Care Centre

This year, once again the MS Care Centre opened their doors to the public inviting them for a coffee morning with a bonanza raffle, live music and stalls to include homemade cakes, plants, artwork, books and flower arrangements. The day was a great success and overall a fantastic €4,130 was raised. This would not have been possible without the support from the team at Software Quality Systems who volunteered their services at the Care Centre on World MS Day. Thanks to everyone who gave their support!

Skydive for MS!Are you looking for the ultimate adrenaline buzz? Is jumping out of a plane at 10,000ft on your bucket list? Well, why not sign up for our skydive in the Irish Parachute Club (Skydive IPC) on the 25th September.

Please contact Samantha on samanthal@ms-society.ie for more information or to register your place!

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ESB

Thanks to the staff of ESB who chose MS Ireland as one of their staff charities.

Skydive for MS! (Cont)

We recently caught up with Jack Donovan, Grainne Lommano and Laura Skelly from Merck Pharmaceuticals who all completed a skydive for MS Ireland in May. We talked to them about their experience and their reasons for skydiving for MS!

From Grainne and Jack’s perspective, “We want to help raise funds for MS Ireland as a cousin of ours is living with MS and facing the challenges it brings”

Grainne works with Merck Biopharmaceuticals where her role is to promote a therapy which slows down the progression of MS. As the key account manager in Ireland, she is inspired daily by the neurologists, MS Nurses and the neurology teams across Ireland, and has the privilege to experience first hand the wonderful work they do.

Laura Skelly has been interning with Merck, gaining insight into the lives of people who are dealing with long term illnesses and she says it has been a very eye opening time for her. Her aim for this year has been to do as much as possible to make even a small difference. She said of her skydive experience “so not only did we feel we raised money for a fantastic cause, it was also the most incredible and exhilarating experience ever…”

Well done to Jack, Grainne and Laura!

Elyse Kenny, committee member from the Tuam branch, did a skydive on 22nd of May and raised €2,082 for MS Ireland. Well done Elyse!

F U N D R A I S I N G

Thanks Google!

The team at Google were on hand to volunteer their services doing some much needed painting and gardening at the MS Care Centre and we would like to say thank you to everyone involved for a job well done. Please contact Samantha on samanthal@ms-society.ie for more information on how your company can volunteer with us.

Huge thanks also to the Offaly branch for organising a stand for MS Ireland at the National Ploughing Championship from 20th-22nd September! This is a great opportunity to raise funds and to showcase the work of MS Ireland.

Thanks Perrigo!

A huge thank you to Perrigo for their extremely generous donation of €30,000 to MS Ireland. €15,000 of this will be used to support the MS Information Line and €15,000 will go to the Care Centre.

Camino and Base Camp

Good luck to the teams taking on the Portuguese Camino and Everest Base Camp in the next few weeks. If you would like to join in on the challenge next year we are now talking registrations for Everest Base Camp and Kilimanjaro for 2017. Email caitrionah@ms-society.ie for more information.

Base Camp May

Well done to Sinead Davis, Alan Cornally and Paul Taffe who all made it to Everest Base Camp in May.

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Summer Raffle

A huge THANK YOU to everyone who supported this year’s Summer Raffle. The response has been fantastic and the funds will make a huge difference to services in our Care Centre. Women’s rugby international Jenny Murphy joined us for the draw on the 8th July alongside our lovely Branch Liaison Officer Denise Carey. We are delighted to announce this year’s winners:

1st Prize – Mary Fox, Dublin2nd Prize – John Ryan, Leitrim3rd Prize – Carol Kavanagh, Wicklow

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Marathons Home and Abroad

Want to take on a challenge for MS Ireland? Here is your chance. Registrations for the Dublin Marathon on the October Bank Holiday Weekend are now open. If you are looking for something a little different we have limited guaranteed places for the New York 2016, London 2017 and Tokyo marathons 2017. If you are looking for a life time experience while raising funds for MS one of these may just be for you. For more information email fundraising@ms-society.ie

Last year 15,000 readers across Ireland helped raise an amazing €500,000!

This year’s MS Readathon runs from 7th October to 7th November

“I love reading with my children. And reading on my own used to be one of the things I most enjoyed. My favourite book from when I was a little girl is called My Naughty Little Sister.

That’s one of the great things about the MS Readathon. It gets children excited about reading. I love where stories can take you. You get to leave the real world behind, and enter a world of fantasy and make-believe.”

Lucina Russell (with children Leon and Mya)

If you are a parent like Lucina, who would like to get your child involved, or a teacher looking to take part with your class, visit www.msreadathon.ie and we’ll send you out everything you’ll need.

All participants will receive a certificate and/or reading reward and there are many great prizes to be won!

Schools can also request a visit from one of our school ambassadors – just call the Readathon team at (01) 678 1600.

Annual Fundraising DinnerOn 21st July, we held our annual fundraising dinner at Leopardstown Racecourse. Thank you to everyone who came and supported us. It was a brilliant night with many wins all round! Ivan Yates was MC, entertainment was by Book Brass Band and magician Colm Dawson had the crowd buzzing!

L-R :Deirdre Lillis, Betty Tuite, Jean Maguire, Helen Quinn, Laura Gormley, John O’Halloran and Ava Battles.

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Wild Atlantic Warrior Alan Ryan from Killarney took on the mighty challenge of running and cycling the Wild Atlantic Way for MS Ireland. Alan, who runs Hardman Events, stated:

“With its 2,500km of sheer scale and spectacle, the WAW offers just the kind of grand gesture I’ve been looking for but did require a huge amount of training and effort, both of which I fully prepared for”.

Alan was joined on 16th June for the Newport to Westport leg by Yvonne Corrigan and Duncan Pratt, committee members of the South Mayo Branch. Yvonne Corrigan said “It is important that people know that the local branch is available to help and support persons from the South Mayo Area who live with MS”.

Knock Airport 2016MS Ireland was delighted to be chosen as one of the Charity Partners for Knock Airport’s 30th year celebrations. The highlight of the year took place on the weekend of the 27th and 28th May, which culminated in 2000 people taking on the Runway Run.Mike Crowe, Fundraising Executive, MS Ireland, welcoming the new initiative said, ‘MS Ireland is delighted to have been chosen as one of Ireland West Airport’s nominated charities for 2016, this is a much welcome boost to people who rely on MS Ireland. I would also like to thank Bank of Ireland for their very much appreciated sponsorship of this event.”

Pictured L to R: Mike Crowe, MS Ireland, Joe Gilmore, MD Knock Airport, Eugene Loughran, Regional Manager, Bank of Ireland.

Ros Go Run The 3rd Ros Go Run takes place on Sunday 4th September, in Loughlynn, Co. Roscommon at 11:30am. Participants can chose to do a half marathon or 10KM run. There will be category prizes and race packs for entrants. MS Ireland are delighted to once again be this year’s charity beneficiary.

Marie’s Spin for MSIn July 2016 Marie O’Connor from Co. Limerick cycled The Wild Atlantic Way to raise awareness and much need funds for Multiple Sclerosis Ireland. Marie states “I am fortunate to have the health and well-being to aspire to undertake this challenge in aid of people who may not be in as fortunate a position. It is from personal experience that I find my inspiration to undertake this mammoth cycle along the western coastline of Ireland. My father has multiple sclerosis and from his association with the MS Society I have seen the wonderful services and supports that are provided, helping people with multiple sclerosis throughout Ireland. It is with this challenge in sight that I am reaching out for support to help achieve my goal of cycling The Wild Atlantic Way to raise essential funds and awareness for continued services by MS Ireland for the MS community”.

As well as raising thousands for MS Ireland, Marie also raised huge awareness for MS on the entire Western region of Ireland. To see more photos and a full description of Marie’s daily endeavours see: www.facebook.com/MariesSpin4MultipleSclerosis

MS Ireland are very grateful to Marie for undertaking this mammoth challenge.

Marie with Irish rugby legend Paul O’Connell wishing her well.

Betty Duffy’s Tea Day

Betty Duffy from the Roscommon branch this year hosted her 5th (and most successful) Tea Day raising a grand total of €2,272.50.

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Donegal

Rosie and Noel Devlin from the Donegal Branch presenting Catherine Peoples, Regional Co-ordinator for the North West, with money raised from their coffee morning for World MS Day. A total of €1,868.00 was raised.

Galtee walk

East WicklowEast Wicklow Branch held a very successful Evening of Short Stories at the Glenview Hotel in May, to mark World MS Day. It also marked the end of an era for the creative writing group as their trusty facilitator for the last three years is taking leave of absence to undertake a PHD. Antonia Harte brought the fledgling group to a standard they would never have dreamed of, making Wednesday mornings at the Greystones Parish Hall a thoroughly enjoyable time for us all. The group will miss her. We wish her well in her future endeavours.

B R A N C H N E W S

TuamTuam branch celebrated their 10th birthday on Sunday 3rd July. A very happy birthday to the Branch and thank you for all your hard work over the past decade!

Tuam branch committee Pictured L to R: Mary Melia, Treasurer; Caroline McCavera, Secretary; Josephine Noone, Chairperson.

Fermoy The Annual Galtee Walk for the Fermoy Branch of MS Ireland was held on Sunday 19th June. This was officially the 35th year of the Walk and despite the inclement weather it was heart-warming to see such a large turn-out showing their support and walking the Galtees to raise funds for their local MS Branch. Unfortunately the fog was as persistent as the rain was relentless and for safety reasons people were advised to do only part of the walk. Despite all this, spirits remained high with volunteers and walkers alike and everyone enjoyed the event with some already discussing next year’s walk! Sincere thank you to all who helped out in any way on the day.

Youghal Flag Day, April 2016

South MayoMaureen Kirrane, Bekan, Claremorris, Co. Mayo presents a cheque in the sum of €1118 to the South Mayo Branch at an Open Meeting held on the Saturday, 4th June. Maureen held a fundraising event at her local bar “Ronans”. Thank you Maureen from everyone at the South Mayo Branch.

Pictured L to R: Sharon Dillon, Liam Cannon, Maureen Kirrane, Carol Millington-Pratt, Yvonne Corrigan.

Patsy Guilfoyle’s CD Launch took place on Saturday 4th June at the Dalton Inn Hotel in Claremorris. Patsy launches his second CD “I’m A Mayo Man” to raise funds for the South Mayo Branch. Patsy’s first CD raised over €3,500 for the branch. Patsy presented Mayo footballer Aidan O’Shea (pictured right with Patsy) with a copy of the CD.

Roscommon

Upcoming events - Contact the Secretary on 087 2036119 for information on upcoming Committee and Open meetings. A bag-packing fundraiser will take place on Friday 28th October from 9:30 am to 7 pm, in Supervalu Store, Ballaghaderreen. Contact the Treasurer on 086 8256845 for further information. Christmas card sales will take place at the Supervalu Store in Boyle on Friday 25th November and Saturday 26th November from 9:30 am to 6:30 pm. Contact the Secretary on 087 2036119 for further information.

Cutting the cake

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Tralee/ West KerryBranch secretary Susan Carey was featured in local newspaper Kerry’s Eye on 19th May, in the run up to World MS Day

Upcoming events - The annual Flag Day will take place in Tralee on Saturday 27th August. The annual Ita Barry Memorial Walk will take place on Sunday 11th September. For any further queries on these events please contact the Secretary Susan Carey on 085 7424114.

B R A N C H N E W S

Tipperary SouthThe Tipperary South Branch organised a coffee morning to celebrate World MS Day on 25th May in the Clonmel Park Hotel. The day coincided with the branches’ third birthday. The day involved a coffee morning and a series of talks by the Citizens Information Centre and other local service providers.

Upcoming events - There will be a 5km walk/run in Lisvernanne, Glen of Aherlow, in August 2016, date TBC. Please keep an eye on the MS Ireland website for further details. The Branch would very much like new people to get involved. Contact the Secretary Loraine Fahey for details on 086 3181220

LouthThe Louth Branch held a vintage car event in the Monasterboice Inn on World MS Day.

Limerick

Members of the Limerick branch enjoyed an event in Tara House on World MS Day.

KildareUpcoming events - The Christmas party will be held on Saturday 10th December in the Glenroyal Hotel, Maynooth.

The Kildare Branch is always looking for a hand with collections at weekends. Please contact Rita on 087 6160912

OffalyUpcoming events – The branch have a stand at the Tullamore Trade Show on Sunday 14th August.

CorkPresentation to Chairperson Liz Hooley of Cheque for €2,000 raised by staff in Alcon.

MeathA fundraising coffee morning with a garden walk near Mellifont, Slane was held in May and was a great success. Many thanks to all those who supported it.

Upcoming events – Church gate collections will take place on Saturday 13th and Sunday 14th August. The Members Memorial Service will take place on Wednesday 28th September at the Headfort Arms Hotel at 7.00 pm.

The Halloween Party will take place on Wednesday 26th October at the Ardboyne Hotel, Navan. Please see The Meath MS Society Facebook page for information nearer the time.

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Some more photos from the fantastic activities and

events organised by our hardworking voluntary

Branches!

Special Members offer – buy four calendars – get the fifth one FREE!!

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