COMMUNITY Issue 106 - MS Ireland
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Issue
106
Autumn / Winter 2019
COMMUNITY 18
Community News
4 8
World MS Day MS Ireland Community
Save the Date for MS Explored
A meeting for young people living with
Multiple Sclerosis
Saturday, 12th October 2019
at The Gibson Hotel, Dublin
Guest speakers to be announced
For more information see
https://www.ms-society.ie/
RCN 20007867 | Date of Preparation: 26 July 2019 | IE02/GIL19-CNF014a
106
4 8 18 Friends
Welcome to the
Autumn 2019 edition of
MS News.
The theme of this
issue is ‘Community’.
World MS Day MS Ireland Community Community News
Throughout, we
discuss the various
roles of individuals in
CONTENTS the MS Community in the hopes of making you aware of
the support that exists and some of the opportunities that
are available to deepen your engagement with the MS
Ireland community. From page 6-9 you can read about
some of the roles within MS Ireland’s community. Page 21
outlines some of the roles within the healthcare team.
News 4
An update on MS Ireland’s activities can be found on page
MS Ireland Community 6 4. As always, we want MS News to be a place where
people living with MS have the opportunity to have their
Reflections 10 voices heard. This edition features two personal stories,
on page 11 Maura Maye shares her story and how she
My Story – Maura 11 became involved in the MS community through her local
branch. On page 16 Carol De Buitleir shares her story
Care Center 12 in which she discusses her approach to life with MS. Dr
Rebecca Maguire shares details of the European MS
Activism In Action 13 Platform Spring Conference on page 17 and on page 13
we highlight the advocacy efforts of Fiona O’Reilly.
Conference 14
Professor Sabina Brennan kindly contributed to this edition
My Story – Carol 16 with a piece on the importance of social inclusion, this can
be found on page 20.
EMSP Report 17
In June, MS Ireland said goodbye to a beloved colleague,
Community News 18 Margaret Maguire. In her role as the Clinical Care
Manager of the MS Care Centre, Margaret met many of
the members of the MS community. On page 10, there is
Social Connections 20 a tribute to Margaret from her colleagues in the MS Care
Centre.
A Quick Guide To Healthcare 21
We hope you enjoy this issue of MS News. If you have any
Fundraising 22 feedback on MS News or have suggestions for what you
would like to see in future issues, please contact the editor
Calendar & Cards 27 Aoife Kirwan on 01 6781612 or by email to
aoifek@ms-society.ie
Save the Date 28
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
Aoife Kirwan - aoifek@ms-society.ie
ADVERTISING
Jessica Charters - jessicac@ms-society.ie Tel - 01 6781600
www.ms-society.ie 3
NEWS 106
Website World MS Day
A range of fantastic events were held throughout Ireland
to mark World MS Day including coffee-mornings, get-
togethers, vintage car shows and information days. The
day was also marked in the MS Care Centre where
visitors enjoyed refreshments, home-baked goodies and
music.
Awareness of MS in the
On the 4th of July, MS Ireland launched our brand new
general public
website! The website project was a culmination of over a
To mark World
year of planning, research, testing and development and
MS Day 2019, MS
we are delighted at how our new site looks and functions.
Ireland and Novartis
The new website was created by Annertech who have
commissioned a
been working with our communications team throughout
piece of research to
the project. In the coming months, some more features of
explore awareness
the new site will be going live so watch this space! In the
of MS in the general
meantime you can check out the new site at
public, including the
www.ms-society.ie
visible and invisible
symptoms of MS.
World MS Day This new research which was conducted in April 2019
by IPSOS/MRBI, found that 93% of people in Ireland
claim to be aware of MS and more than 44% consider
On May 30th, MS Ireland joined people living with MS their understanding of the symptoms and details of the
and other MS organisations around the world to mark condition to be poor. Almost one third of respondents
World MS Day. Each year World MS Day takes a different were unable to list any symptoms related to MS.
theme. This year the theme was ‘My Invisible MS’
(#MyInvisibleMS) Although more than one third of the population (37%)
claim to have a family member, friend, or loved one living
The aim of using this theme was to raise awareness with MS, and 66% of people in Ireland believe they have
of the invisible symptoms of MS and the unseen a good understanding of MS, there are still some key
impact of MS on quality of life. Some of the common aspects of the condition that remain unclear. Only 8%
misconceptions of MS where addresses in a series of of people identified fatigue as a key symptom despite
'Myth Buster' images. almost 90% of people living with MS reporting fatigue as
a consequence of their condition.
The campaign invited everyone affected by MS to share
their invisible MS symptoms. They were given a voice to Ava Battles, Chief Executive of MS Ireland said, “While
express what they wanted others to know and understand many people are aware of MS and the more visible,
about MS, in order to challenge common misconceptions tangible symptoms that it can cause, the effects of MS
and help people understand how to provide the right can vary greatly from person to person and can often be
support. invisible to those around them. Through this research and
our World MS Day activity we hope to raise awareness
around the less visible aspects of MS and how it can
impact on the day to day life of a person living with the
condition.”
Professor Orla Hardiman, Consultant Neurologist said
“The research findings highlight how prevalent MS is in
our society today with nearly 40% of the population being
impacted either directly or indirectly by the condition. It’s
important that as a community we educate ourselves on
the symptoms that affect the day to day lives of people
living with MS, especially those that are not immediately
apparent and less visible.”
4 www.ms-society.ie
NEWS 106
Carers Week New Method Promotes
Myelin Survival
Researchers at the Menzies Institute for Medical
Research in Tazmania have published a study on a
non-invasive method of promoting the survival of myelin-
producing cells. Damage to myelin, the protective
outer coating on nerve fibres in the brain can result in
symptoms of MS. The team of researchers have explored
Thomas Mc Carthy, Communications Executive for MS the use of ‘repetitive transcranial magnetic stimulation’
Ireland (second from right) with Carers week partners
as a method to promote myelin production. The study
MS Ireland was delighted to partner again this year for showed that multiple bursts of this magnetic stimulation
Carers Week. Events were held across the country to method to lab model over four weeks increased the
celebrate carers, including physical and online coffee number of mature myelin-producing cells in the brain.
mornings.
In advance of Carers week, a survey was conducted
by the Care Alliance and eleven partners, including MS
Health Service Restructure
Ireland, which indicated that many family carers are
unable to leave their home and rely on online supports, On July 17th, Minister for Health, Simon Harris confirmed
information and social connection. Over half (59%) of a restructuring of the health service. The restructure will
respondents indicated that they ‘often’ or ‘always’ felt see the establishment of six new regional health areas.
lonely or isolated with only 3% saying they could ‘always’ Each region will be responsible for the planning and
make it to social and support events they wish to attend. delivery of integrated health and social care services.
This move is in keeping with Sláintecare commitments.
Speaking about the research, Zoe Hughes, Policy & Sláintecare is a transformation programme for health
Research Officer with Care Alliance Ireland said; and social care services. Minister Harris said “This is
a key day for the delivery of Sláintecare and for the
“It’s clear that the lack of on-the-ground supports like reform of our health service." He continued that the
respite and home care is having a huge impact on family result of identifying the six regions which will be used in
carers being able to take a break and seek supports – developing structures for the delivery of integrated care
meaning that online supports are increasingly becoming would be clear financial and performance accountability
vital for many of those who are isolated and lonely in their as well as empowerment of frontline staff and delegating
role”. authority from the HSE to the local regions.
A co-design process, involving stakeholder contribution
Dr Una will follow in the coming months. Minister Harris
stated that he looks “…forward to engaging with key
stakeholders, including the public, patients and staff as
Fitzgerald part of this process.”
Paul Reid, CEO of
Dr Una Fitzgerald, Principle the HSE, Minister
investigator of the MS Research Simon Harris and
Lab in NUI Galway and Director of Laura Magahey,
the Galway Neuroscience Centre, Executive Director
has secured funding to lead a consortium of researchers of Sláintecare
across Europe. Dr Fitzgerald has brought a pan- announcing six
European team of experts together to develop devices regional health
and therapeutics aimed at treating the progressive phase bodies to deliver
of MS. The €3.9 million project will see a new generation health and social
of scientists receive world-class training in biomaterials, care.
stem cell biology, neurological disease pathology,
biomarkers, computer modelling of cerebrospinal fluid
flow and design of medical devices. The focus of their
research will be slowing MS progression.
www.ms-society.ie 5
MS IRELAND COMMUNITY 106
MS Ireland Community
MS Ireland is the only national organisation providing programmes encourage people living with MS to access
information, services and support to the MS community. their community, use local resources and experience
We provide a wide range of specialised services and peer support. They also allow for continued contact
resources on a national, regional and local level. MS between the person living with MS and the Community
Ireland’s community consists of many individuals Worker without the case work element.
including people living with MS, their families, MS
Ireland staff, Branch members, fundraisers, volunteers, The Community Worker continues to link and develop an
bloggers, Board members and more. There are lots of appropriate working relationship with the Health Service
ways to engage with our community. The community Executive (HSE) and other agencies relevant to a people
exists on local, regional and national levels. We also living with MS. We identify and apply for additional
have an online community that follow our social media sources of funding to help fund additional programmes
updates and engage in our online activities. It is e.g. respite, information days etc. We work closely with
important to MS Ireland that our members are aware of local MS Branches to raise public awareness of multiple
the supportive, welcoming and diverse community that sclerosis.
exists. Here, a number of community members discuss
their role in our MS Community. For information on how to get in touch with the
Regional Community Worker in your area, please
visit our website – www.ms-society.ie or call our
Community Information line which opens Monday – Friday from
10am-2pm on 1850 233 233
Worker
Aoife Lambe
I am a Community Worker
with MS Ireland, providing
Fundraiser
support and information
to enable and empower
Robbie Haycock
people living with MS to
manage their condition so When one of the most amazing people in my world,
as to have the best quality Ciara said “Yeah, Robbie, it's MS.” the walls of
of life possible. There are Beaumont Hospital seemed to blur. I didn’t know how to
two pillars to our work – respond other than hug her and say “Okay. We’ll nail it”
Individual Support Work and Community Development.
What Ciara didn’t know was that I had already reached
Individual Support Work (case work) means that we out to MS Ireland, who put me at ease. This helped
respond to contact made by people living with MS and to reinforce my belief that “Yeah, we will nail this,
their families and complete a holistic needs assessment. together!”
Once needs are identified, we make the necessary
referrals to relevant agencies. We always advocate on I was on the MS Ireland website almost daily when I
behalf of the person. The individual support work uses a saw a fundraiser for a skydive! This was a bucket list
model of intervention that is solution focused short-term activity for me. The fundraising and social media teams
and will prioritise those newly diagnosed with MS. helped with everything from sponsorship cards and
t-shirts to encouragement.
Community Development involves ensuring that
programmes identified by MS Ireland are available Since then I have tried to help out where I can, shaking
regionally. Programmes include Getting the Balance buckets at the Leinster Rugby Take-Over Day, helping
Right, Self Management, Newly Diagnosed Days, at the Abseil in Croke Park and pretty much anything
Teen/Family Days and Coffee/Support Groups. These else we could commit to.
6 www.ms-society.ie
MS IRELAND COMMUNITY 106
While volunteering helps MS Ireland, it has also helped and non-members, staff, volunteers and supporters
me. I am astonished at the commitment I have seen in at fundraising events, Branch meetings, Council,
the people I have met at fundraising and volunteering sub-committees, around the Board table, at research
events. I have also been amazed at their level of briefings and at our conferences and AGMs.
knowledge. It is incredibly reassuring to know that there
is a great community providing support for all those We all have our individual personalities, strengths
affected by this condition. and weaknesses, uniqueness and differences in
age, location, gender, religion, ethnicity and sexual
I want to thank everyone in the entire MS community. orientation, but we come together as a diverse
I don’t think I would have managed without your help community under the one MS Ireland banner. Right
and advice. Family and friends have also been an now, after my immediate and extended family, MS
incredible support to Ciara and I. Cheers to all the Ireland is my number one community and I love being
volunteers for the advice, support and laughs. With part of it!
your continued help, we will nail this, together!
There are lots of opportunities available for people
who would like to get involved in raising vital funds
for MS Ireland. To find out more about current and
MS and Me Blogger
upcoming opportunities visit our website
www.ms-society.ie/get-involved/fundraise-us or Trevis
email fundraising@ms-society.ie
Gleeson
Board Member
Maurice
O’Connor
MS Ireland is directed by a board of volunteers. This
board is made up of people, some of whom have MS
themselves and others whose family members have
included a person with MS. Board members come
from varied backgrounds, have skill-sets and areas
of expertise, all of which help to inform and direct the Almost every person living with Multiple Sclerosis –
organisation. I am currently a member of the Board of either with the diagnosis or living with a person who
MS Ireland. For me, joining the MS Ireland community has the disease – is the beneficiary of knowledge
started when I saw a small, very anonymous looking gained by those who have gone before.
ad, asking for volunteers, in a local newspaper here
in Kilkenny. Or maybe it really started years earlier Be it that we take a disease modifying medication that
when I heard from one of my brothers that he had been someone volunteered to take as a test subject, use/
diagnosed with MS. ascribe to complimentary lifestyle changes which have
gained medical acceptance over the years, read/heard
My family and I moved to Kilkenny from Dublin in 2005, an accounting of someone’s challenges/struggles/
and I finished working near the end of 2012, so those successes/setbacks, had a supportive nudge, or simply
long-standing communities were almost gone. By an understanding shoulder; we all live our lives with
2014, all my children had left school, and that drew MS in a fashion which is shaped by other individuals’
a line under my involvement with the community of experiences with our shared malady.
school parents. That anonymous little newspaper ad
became my introduction to the MS Ireland community. As a person who has taken so much from the existing
body of knowledge at the time of my diagnosis, I have
Ever since I picked up the phone to answer that felt it an obligation to return to that growing body as
ad, I've been privileged to meet many wonderful much as possible as repayment for the benefits I have
members of the MS Ireland community, members gained from what I term “MS Sensei”
www.ms-society.ie 7
MS IRELAND COMMUNITY 106
As part of the MS & Me Blog team, I am surrounded The Information Line is open Monday to Friday
with others who feel much the same. from 10am-2pm.
All calls are transferred to a messaging service
We all have something to share. Perhaps a story of after hours.
how we found our way over, under, around or through MS Information Line – 1850 233 233
a particular difficulty. Sometimes it’s the first time
we’ve made personal feelings or experiences public.
By doing so we often articulate what others have been
living but haven’t put into words for themselves. Blogging and Volunteering
There is no greater satisfaction than to read a
comment that says, “I thought I was the only one”
Christina Mc Donald
or “I’m going to show this to my family” because we
strummed a shared chord. All of us at MS & Me have
such experiences in our own lives with MS. It is a
privilege to share with our community as we have
been shared with.
MS and Me blogs are posted weekly and can
be viewed on our website -
www.ms-society.ie/ms-and-me
After my MS diagnosis
MS Information Line in 2016, I started
writing blogs as a way
Chris Gill for me to share my
thoughts, feelings and
experiences. From my
first blog post, people
started reaching out to
me. I got a real sense
of support from others
The role of the Information Line can vary very much
with MS and that sense
from day to day. I answer calls, text messages,
of community was
messages that come in from social media. The
really encouraging. I
Information Line is often the first port of call for people
have since become
and serves as a signpost both to the services available
part of the MS and Me
in MS Ireland, to the HSE and other community
blog team!
services.
I have also been involved in fundraising. After my
We provide information on a range of topics including
diagnosis, I held a “Jam-a-thon” night in Cavan, to raise
entitlements, treatment options, employment issues
funds for MS Ireland. It was good to know I was raising
and more. We also provide up to date information
money for a cause so close to my heart which would
to students and health professionals who seek our
help other people like me who are living with MS in
support with projects.
Ireland. I jogged the Mini Marathon, two years in a row
for MS Ireland which was very emotional. I felt like I
For me, the most important role of the Information
was representing the 9,000 people in Ireland with MS. I
Line is to provide a listening ear to people who call,
felt so proud of myself and everyone else that took part.
whatever their concern be it medical, emotional or
Anytime I write a blog or do a fundraiser, I genuinely
seeking information. The calls that come in may be
feel like I am part of the MS community and I get a real
from any person within the MS Community, including
sense of belonging and being part of an amazing team.
those living with MS, family members or friends who
have questions or concerns, or indeed, a person newly
MS and Me blogs are posted weekly and can be
diagnosed who is frightened or worried. It is important
viewed on our website -
to me to ease concerns and be there for people when
https://www.ms-society.ie/ms-and-me
they need it most.
8 www.ms-society.ie
MS IRELAND COMMUNITY 106
supports and services on the ground at a local level.
MS Support Nurse We are people just like you who come together to
help those affected by MS, including family members
Ann Gill and carers.
We try to be inclusive of everyone in our community.
As the MS Support Nurse in the MS Care Centre, I We foster an ethos of community and engagement
meet with residents by appointment, on a one-to-one on several levels. We issue newsletters by email, on
basis. I appreciate that different people have different our Facebook page and in hardcopy so that people
concerns and it is important to me to address whatever keep in contact. We are conscious that we have
it is that someone is struggling with. People may wish sub-communities within our community and that we
to discuss linking in with Community Services, their are part of a wider societal community. Examples of
Public Health Nurse or their MS Ireland Community sub-communities are the Coffee Mornings and Yoga
worker. I can also link in with the MS Nurse in the Classes and Physio Classes in our area. Each class
hospital they attend. After our appointment and forms bonds and becomes a community within our
with permission from the resident, I can link in with Branch.
appropriate services or personnel on their behalf to try
and access the services and personnel they need. As part of our role within the wider societal
community, we use our bag packing and bucket
I come from a background in public health nursing so I days to reach out to our neighbours and friends in
understand how to access key people in the community our local areas. By our very presence, we show that
and how to navigate services to achieve best outcomes there are people with MS living and socialising in the
for the residents I deal with. local community. Newly diagnosed people come up
to us, reassured to find that there is a local Branch,
Following their stay in the MS Care Centre I am happy some of us living with MS for a very long time,active
to be contacted by residents in relation to any of the in the community.
issues discussed during our appointment, assisting
where possible. Last but by no means least, we are part of the wider
MS Ireland community. As part of the East Coast
What I enjoy most about working with the MS Area Region, we form another Community with our
Community is having protected time with the resident sister Branch, East Wicklow. We share events, news
during our appointment. This allows me to have a and views, information and tips. This engagement
meaningful conversation and assist in resolving issues and sharing is a real example of community in
or concerns that matter the most to each resident. action.
For information on the MS Care Centre visit our We support MS Ireland’s National Care Centre
website – www.ms-society.ie or call the MS Care and recently raised funds for equipment. Branch
Centre on (01) 490 6234 members support MS Ireland’s Business Case to
increase funding for the Care Centre. We have a
louder voice if we all speak with a clear and united
Branch Member message. We are at our best working together to
achieve a shared goal.
Mary McKeon For me, being involved with my Branch has
provided me with a great sense of community spirit
and has provided me with friendships and memories
to last a lifetime. I would encourage anyone to get
involved with their local Branch on a level that suits
The Voluntary Branches them.
of MS Ireland are a real
example of community in For information on contacting your local branch
action. I am part of the you can visit our website – www.ms-society.ie,
South Dublin Branch, one call our Information Line 1850 233 233 (Monday
of 33 Voluntary Branches – Friday 10am-2pm) or speak to your Regional
which form the backbone Community Worker.
of MS Ireland, providing
www.ms-society.ie 9
REFLECTIONS 106
Our dear colleague, Margaret Maguire sadly
passed away on the 12th of June. Margaret
was the Clinical Care Manager at the MS
Care Centre in Rathgar. She was very
passionate about the MS Care Centre
and the service it provided. In her role
as Clinical Care Manager she had
ensured that the MS Care Centre
was registered as a provider with
the Health Information Quality
Authority (HIQA).
Margaret had many
achievements during
her career and she will
always be remembered
for her kindness, respect
and dedication to others.
When asked to remember
Margaret, the staff at the
MS Care Centre composed
the following piece.
Margaret was at the heart of the centre and all the energy flowed from her. Her
door was always open and she always enjoyed a friendly chat. Margaret was a
true professional and her first thought was the human and their needs. She will be
missed for her utter dedication to the centre.
Margaret’s ability to use her contacts to facilitate the MS Care Centre had to be
seen to be believed. She touched the lives of residents, staff and all who came in
contact with her. She has left a very big footprint in the centre. Margaret often stayed
in the Centre working late into the evening but now there is no light under her door.
Margaret’s presence however will be felt in the centre for years to come.
10 www.ms-society.ieMY STORY 106 My Story Maura Maye When I was diagnosed with MS in 1996, I left the hospital with no real treatment options, just a few information leaflets. It was difficult but having a positive relationship with my MS Nurse and Neurologist helped. They supported me and have continued to support me over the past 23 years. Over the years, I have also received advice and support from Roseanna Duke who is a Regional Co-ordinator with MS Ireland. Since my diagnosis, life has changed in some ways but has stayed much the same in others. It is important not to lose your identity to a diagnosis. In 2006, I became wheelchair-bound which took some adjustment. I have been able to continue working on a part-time basis which is incredibly important to me. My work-life provides me with independence, social interaction and the chance to financially contribute to society. I find that it helps to maintain my sense of self-worth and keeps my mind sharper. Disclosing my diagnosis in the workplace has been very helpful for me. My colleagues are very supportive and I feel that if they were not aware of my needs they might not be sure on how best to provide support when I need it. In addition to working, 10 years ago I made the decision to join the MS Ireland Kildare Branch Committee. I felt that in doing so I would meet others with similar experiences. I have found engaging with the local branch to be a very positive and an incredibly rewarding experience. Fundraising for my local branch has been very meaningful to me. I am happy to know that the funds raised help to facilitate the purchase of essential equipment and ease financial burden of MS, on a local level. There is a great sense of community amongst the branch members and I look forward to the meetings which are held monthly. New members to the branch are always needed and welcomed! A few years ago, I made the decision to take part in the Womens Mini Marathon and have participated numerous times since. We are in testing times for charities. Fundraising is a particularly challenging element as there are often so many worthy causes for people to support. Families across Ireland are impacted on a daily basis by one condition or another. We are one of many communities who need support. It is important that MS Ireland does not get lost in the numerous charities that are represented at fundraising events like the Womens Mini-Marathon. When I have taken part, it has been along side family and friends and other supporters of MS Ireland. It is always uplifting to see so many people come along to support MS Ireland and the MS community. Twice a year, I spend a few days in the MS Care Centre. Through this I have a met great friends and each year we co-ordinate our stays in the MS Care Centre which allows us to pick up where we left off with each other on our last visit. The high standard of care, advice and support we always received during our week in the MS Care Centre was all thanks to the hard work and dedication shown to us by Margaret Maguire and staff. Margaret will be truly missed. We will always be grateful to Margaret and her legacy will continue. May she rest in peace. www.ms-society.ie 11
CARE CENTRE 106
We Need YOU!
You can find contact details for your local TD’s by
visiting www.whoismyTD.com and entering your
address in the search bar and pressing ‘search’.
Let us know how you get on!
We are always interested to hear about any responses
or feedback that people get from their TDs – please
contact Aoife Kirwan, Information, Advocacy and
Research Officer by email to aoifek@ms-society.ie or
call the office on (01) 678 1612.
Last year, MS Ireland asked our members and Sample Letter
supporters to write to their local representatives asking
them to support MS Ireland’s Care Centre Business Dear Deputy [insert name of TD],
Case. We also requested your support in asking your
local representatives to attend a briefing on this issue, My name is [insert your name]. I am writing to you
which was held in Leinster House in October. With your regarding a request MS Ireland forward last year for
support we welcomed over 50 representatives and further investment in the MS Care Centre. This vital
their staff to this briefing. We requested an additional funding has not yet been secured. The Care Centre
€600,000 in annual funding to support our Care Centre. is a state-of-the-art respite facility. Admitting and
We explained that approval of this funding would result welcoming 400 people from all parts of the country on
in an additional 1,128 bed-nights on an annual basis an annual basis, the Care Centre not only provides
and would ensure the optimal use of this service. people living with MS and their caregivers a break but
Unfortunately, this funding has not yet been secured. delivers a range of therapeutic services, neurological
assessments and social activities.
The centre, which is situated in Bushy Park, Dublin,
is a fully-equipped, state-of-the-art respite facility. Due to decreased income, the Care Centre only
Admitting and welcoming 400 people annually, the MS opens 40 weeks per year. MS Ireland require a further
Care Centre delivers a range of therapeutic services, €600,000 in annual investment which would allow
neurological assessments and social activities. It gives them to cater for increased demand on the service.
people living with MS, from all parts of the country, a This would see the Care Centre open 350 days per
chance to rest, revitalise and rejuvenate in a homely, year, providing an extra 1,128 bed-nights annually.
relaxing space, which is equipped for their needs. This would allow additional people living with MS the
It also allows carers to have a break, safe in the chance to benefit from what the Care Centre has to
knowledge that their loved one is being well cared for offer. Further investment will not only support people
in our Care Centre. Supporting carers is essential to living with MS, it will also support voluntary carers,
ensuring the sustainability of homecare. without whom care in the home would be impossible,
putting further pressure on our health system and
We are once again asking you to join us in asking the hospital funding.
government to support the MS Care Centre Business
case. By acting as a community we strengthen our [If you have any personal details you would
voice. You can help MS Ireland to secure this funding like to add in support of our ask, please feel
and help open the service to even more people living free to write it in]
with MS by contacting your local representative. We
have a sample letter/email which you can use to As a member of your constituency, I am asking that
contact your representatives. We encourage you to you support MS Ireland by doing what you can to help
personalise your letter and share details of your own secure this additional funding.
experiences which may support our request, if you wish
to do so. Yours sincerely,
[insert your name]
12 www.ms-society.ieACTIVISM IN ACTION 106
Activism in Action
Collective advocacy is vital to the
introduction of sustainable change.
It is by working on achieving a
shared vision to address unmet
need and using a united voice that
progress is made. Here we see how
one person living with MS used her
voice to inspire collective action.
On May 8th, Fiona O’Reilly, who lives
with MS was joined by hundreds of
protesters who came along to support
her demonstration outside Leinster
House. The aim of this protest was to
highlight inadequate home support and
respite for people living with disabilities.
Fiona receives 28 hours per week of
home support. “I am wheelchair bound
and have two assistants come to help me twice per day. Once, to hoist me out of bed
Fiona in the morning, get me washed and dressed and a second visit to get me ready for bed
at night.” said Fiona. This is a vital service for Fiona as well as her elderly parents who
O’Reilly are often left to fill Fiona’s unmet care needs between the visits from the home care
assistants.
Photo: Fiona, who is the chairperson of the Central Remedial Clinic (Firhouse), Advocacy
Mark Condren group and Respite sub-committee also uses the MS Care Centre and says that her
www.independent.ie respite stays in the centre are essential as they allow her parents to have a break –
"Life is not easy for my elderly parents. My mother is 79 and my father is 80. My respite
stay gives them a much needed break". Fiona believes that the MS Care Centre
should be supported to increase it's hours of operation "I support MS Ireland's request
for additional funding to optimise the use of the MS Care Centre". "Respite care can
be a lifeline for some and allows families and carers the chance of a breathing space
while they continue to look after their loved ones" says Fiona .
“I know lots of people who are not receiving appropriate home support and others who
are not able to access appropriate respite. I felt we were not being heard so I figured
the best way to change this was to protest outside Dail Eireann” Fiona says of the
decision to organise the demonstration. Despite unfavourable weather conditions on
the day of the protest, Fiona and the hundreds of fellow protesters gathered to unite
their voices and communicate their message that people living with disabilities are
desperately waiting for the government to take action on their needs. Speaking on
organising the protest Fiona says “I tried to get myself into as many newspapers as
possible”. Fiona shared her story of life with MS and the challenges she faced as a
result of inadequate services. Her efforts paid off as newspapers locally and nationally
shared details of Fiona’s experience and her plans to hold the event. As a result of
Fiona’s efforts, hundreds of protesters, who were encouraged to wear yellow to signify
hope and as a show of solidarity, turned up to lend their support gaining even more
media coverage.
Fiona is currently planning her next protest on these issues for September.
www.ms-society.ie 13NATIONAL CONFERENCE 2019 106
Living Well with Multiple Sclerosis
National Conference 2019
Saturday the Radisson Blu Hotel
21st September 2019 Ennis Road, Limerick
9.00am - 3.30pm Conference fee €25 Includes Lunch
For enquiries contact:
Western Regional Office, Curragrean Merlin Park, Galway
Call: 091 768630 Email: western@ms-society.ie
Format of the Day: The Multiple Sclerosis Society of Ireland (MS Ireland)
are hosting our Living Well with MS Conference and
9.00 Registration Tea & Coffee AGM in the Radisson Blu Hotel, Limerick on Saturday
the 21st of September 2019.
Opening address The conference theme this year is ‘#my invisible MS.’
9.45 Ava Battles CE MS Ireland One of the many challenges for people with MS can be
the array of invisible symptoms they can experience.
Professor Alan Thompson, Consultant With invisible symptoms you must constantly adjust to
Neurologist, National Hospital for Neurology the differences between how you look on the “outside”
10.00 and Neurosurgery at Queen Square – and how you feel “inside” and how the world reacts
Progressive MS and the work of the to you when you “look so good.” MS has many faces
Progressive MS Alliance and can require varied responses. To understand MS
you need to become familiar with the many faces of MS
Professor Roshan das Nair, Professor of which greet you so you can, together with the person
Clinical Psychology & Neuropsychology, with MS, have the best possible plan.
11.00 Nottingham University Hospital – Managing
the impact of invisible symptoms If you would like to join us for our Gala Dinner and
MS Awards on Friday the 20th at 7.30 pm please
indicate on the booking form over.
Workshops
A) Research Panel including: Dr. Claire
McCoy, Joan Jordan & Professor Susan Accommodation bookings are the sole
Coote - The importance of the MS voice in
12.00 responsibility of the meeting attendee(s)
research design
B) Dr. Jennifer Wilson O’Raghallaigh, and early booking is advisable!
Psychology Dept., Beaumont Hospital -
For those of you who may require accommodation:
The importance of self management in MS
• The Radisson Blu Hotel (061 456200) 3 wheelchair
13.15 Lunch accessible bedrooms. Friday night B&B Double/Twin
rate €155.00 Single rate €145.00
Dr. Rebecca Maguire, Psychology Dept., • Greenhills Hotel (061 453 033) 2 wheelchair
Maynooth University - The importance of accessible Bedrooms (5 min drive to conference
14.30 psychological wellbeing when living with venue) Friday night B&B Double /Twin rate €149
MS Single rate €139
• Travelodge (061 457 000) 4 wheelchair accessible
15.30 Finish & Close bedrooms (5 min drive to conference venue) Friday
night Rate per room €84 (a Double & Single bed in
each room) and an extra €7.50 for breakfast
15.45 MS Ireland’s AGM
14 www.ms-society.ieNATIONAL CONFERENCE 2019 106
Living Well with Multiple Sclerosis
National Conference 2019 Booking form
Name: Surname:
Address:
Phone:
Email:
Are you a wheelchair user? Yes No (please tick)
I am attending Gala dinner (€30) Yes No (please tick)
Special dietary or other requirements Yes No (please tick)
If yes please specify
Have you enclosed conference fee €25 Yes No (please tick)
Have you enclosed dinner fee €30 Yes No (please tick)
Early booking is advisable as places are limited
Cheques should be made payable to MS Ireland
Credit card and Debit Card bookings can be facilitated on the day
** Have you selected your workshop?
(A) Research Panel (please tick)
(B) Self Management (please tick)
Please note that MS Ireland will have its AGM 15.45pm for all MS Ireland Members
Return completed forms on or before Friday 13th September 2019 to:
MS Ireland, Western Regional Office Curragrean, Merlin Park, Galway
091 768630 OR western@ms-society.ie
www.ms-society.ie 15MY STORY 106
My Story "I now know what really matters to me and
what’s not worth worrying about"
Carol De Buitleir
I became a frequent visitor to A&E for the second half
of 2016 when I kept experiencing what I described as
electrical shocks in my brain which would send my body
into spasm and slur my speech. I saw a neurologist for
the first time ever in January 2017. By the time of the
appointment I had blindness in my right eye and was in the
midst of what I now know was a relapse. I was admitted to
hospital.
Finally, getting a diagnosis was a relief but it was also a
shock. I decided to improve my lifestyle to help my overall
health and to compliment my treatment. I’m fortunate that
my employer is very supportive and accommodated me
moving to a less stressful role and a four day week. Over
time I gave up alcohol, caffeine and meat. I began gentle
exercise by taking up yoga and regular walks. I still can’t
stand gyms! I’d rather be outside whatever the season. I
did courses on mindfulness to learn to manage stress. I
have found ways to build these into my daily life so I can
keep up the practise. I exercise at lunchtime. I listen to a 5
minute mindfulness morning meditation and a longer one in
the evening – there are loads on YouTube. MS affects my DUBLIN PHYSIOTHERAPY
cognitive function so I place importance on rest and sleep.
CLINIC
I appeared to have myself sorted, except I was so busy
doing all these things that I didn’t address the emotional Specialising in the management of
side of having MS and it all came crashing down on me
a few months ago. It’s not that I haven’t accepted that I
have MS but I was still holding onto a lot of trauma around
Multiple Sclerosis
my diagnosis and the lead up to it. I had never been sick
before other than the usual run of the mill stuff. All of it Hands On Treatment:
happened unexpectedly, very fast and it was very scary.
I used to have panic attacks if I tried to talk about what
Muscle Stiffness
happened, so I stopped talking and bottled it all up instead. Joint Pain
I finally got myself some help after putting it off for so long. Movement Re-Education
The process is not easy but it is making a difference and
I’m feeling better. Spasticity Management
Postural Retraining
Strangely I find having MS has shown me some good
things about myself including perspective – I now know Balance & Walking
what really matters to me and what’s not worth worrying Customised Gym Program
about. I realise I am resilient. I am more open to trying Home Exercise Regime
new things (like writing this piece!). I have courage I didn’t
realise I had – it’s amazing what you can do when you Equipment
have to. I try to have a positive outlook but its okay to feel Home Visits
down too so I just go with it because I know that I won’t
always feel that way. I try to live in the now. I keep showing 11, The Business Centre, Stadium Business Park, Ballycoolin Road, Ballycoolin, Dublin 11.
up no matter what. My idol Dolly Parton says “If you want Tel/Fax: (01) 8829174/5 ~ E-Mail: info@dublinphysio.ie
the rainbows, you gotta put up with the rain”. www.dublinphysio.ie
16 www.ms-society.ieEMSP 2019 ANNUAL CONFERENCE REPORT 106
EMSP 2019
Rebecca Maguire
The annual EMSP (European MS Platform) conference
took place in Vilnius, Lithuanian in May. This event
presented an excellent opportunity for representatives
from MS organisations, people with MS, clinicians and
research professionals from all over Europe to come
together and share their ideas and experiences relating
to MS.
This year, the EMSP conference theme was “Digital
Health in MS Management” and, over the course of
two days, a number of fascinating presentations were
delivered on this theme. Simply put, digital health is the
use of any technology designed to improve one’s health
and wellbeing. Digital health tools include things such
as wearable technologies, mobile phone applications,
and electronic health records, all of which are rapidly
developing areas in healthcare.
After the conference was opened by Pedro Carrascal A number of other presentations discussed existing and
(EMSP president) and the Lithuanian MS society, an emerging research in the area of digital health, expertly
interesting presentation was delivered by Ireland’s moderated by Trevis Gleason. Marcello Moccia (Clinical
Sabina Brennan, who discussed trends in Digital Neurologist at UCL) presented some interesting work in
Health, drawing on work from the Adapt Centre at the area of ehealth in MS. He also highlighted the value
Trinity College Dublin. Daphne Kos (KU Leuven) also of platforms such as Twitter in enabling people to keep
presented evidence from a wide range of e-health up to date with MS research, but warned against the
technologies designed to enhance quality of life in MS, use of Google in this respect. Ignacio Aizpún (Telefonai
however cautioned that digital health, while a potential Disable Attention Association) also discussed an
add-on, should not be a replacement for face-to-face example of an app designed to help people with MS.
rehabilitation. Nicola Bedlington (European Patients
Forum) also highlighted some challenges relating to Beyond individual presentations, some stimulating
e-health, including variations in e-health literacy and panel discussions took place, with insights from a
digital health inequalities. range of experts. Topics discussed included how best
to implement digital health interventions and effective
People living with MS were central to EMSP2019. A policies for digital health, as well as how to improve the
highly engaging presentation was delivered by Susanna availability and access to digital information.
Van Tonder who, as a person diagnosed at a young
age, shared her experiences with MS technologies and Overall, EMSP2019 was an incredibly thought-
apps, while also highlighting the value of engaging with provoking conference, and demonstrates how the
social networks such as Shift.ms. Another person living whole European MS community is coming together to
with MS, Izabela Sopalska-Rybak spoke eloquently enhance quality of life for those with MS. It is clear that
about overcoming numerous challenges to live well technology has vast potential in helping people manage
with MS. Donna Nahal later delivered an inspiring talk their MS, however there is also a lot to be learned
detailing how she connected with others to combat regarding how to optimise technology to meet patient
feelings of isolation after she was diagnosed at age 17. needs.
www.ms-society.ie 17COMMUNITY NEWS 106
Tuam Branch East Wicklow Branch
In the Tuam Branch we Last year, Greystones Scribblers produced their first
have some budding book – ‘First Flights’. This book of short stories was
artists.We have run art produced following a Creative Writing Workshop that
classes over 6 weeks was organised by the branch. On World MS Day, the
in autumn 2017 and 10 branch organised an evening of short stories in the
weeks in autumn 2018. Glenview Hotel. Only 12 copies of this book are
It was a great class available. ‘First Flights’ is priced at €10, with all profits
and a fantastic way of raised going to the MS Care Centre.
relaxing .We left MS
outside the door and
got engrossed in our
art. We hope to run the
Waterford Branch
class again this year. Pictured are members of
the Waterford Branch who
got together for a coffee
Some of the pieces created morning in St John's
during Tuam Branch art College to celebrate
classes World MS day in May
The Waterford Branch had over 40 members and
Longford Branch family attend their summer lunch in the Woodlands
Hotel in Waterford at the end of June. It was a very
Jimmy Clancy (Event enjoyable afternoon with entertainment and a raffle
Organizer) and PJ after dinner.
Cox (Branch Chair)
Fermoy Branch
The Longford branch in conjunction with event
organizer Jimmy Clancy had a very successful
“Honda 50 Run” in Lanesboro, Co Longford which
raised over €2,000 for the branch. The event was
supported by over 50 motorcycles of all types from all
over the country. These people turn out week after
week, rain or sun to raise funds for deserving causes.
We cannot thank this amazing bunch of people
enough. A massive thank you to all who helped on the
day with registration, catering, provision of food and
spot prizes and also to our great sponsors. We also
need to mention the hall committee who gave us the
use of St Mary’s Hall, a great venue on the banks of
the lovely river Shannon.
East Wicklow Branch
Greystones Scribblers at Cheque presentation from The Mart to the
their ‘Evening of Short Mallow MS Group
Stories. Photograph
The Fermoy Branch wish to thank The Mart, Mallow
courtesy of Barbara Flynn
Photography for their kind donation to the Mallow MS Group.
Thanks to Jerry Leonard, staff at The Mart and their
wonderful customers for their generous support.
18 www.ms-society.ieCOMMUNITY NEWS 106
Fermoy Branch Cork Branch
Fermoy Community Health Project The Cork Branch would like to thank all of the
fundraisers who have helped to support the work of
Aideen Connolly, Regional Community Worker was MS Ireland on a local and national level. Your
the guest speaker at the Fermoy Community Health dedication and time is much appreciated.
Project Health and Well Being morning, providing
information and support to the local MS community.
These monthly talks are provided by the local
Community Health Worker, Jacinta Mc Cormack. Thanks to Claire
Barrett who ran the
Cork City Marathon!
Easter Sunday Dance
Enjoying the night in
Glenville
On Easter Sunday,
the Fermoy Branch
danced the night
away at Kades
Kounty, Glenville to
the sounds of Finbarr
Dennehy. This
fantastic event was
run by Liam Cahill.
Many thanks to Barry
and Bernice Kennedy
for hosting the event.
Great day at the 38th Annual Sponsored Galtee Members of Dezperados with Cork Branch Committee
Mountain Walk after a fantastic concert
Thank you,
Ciaran and
Aodh
On Sunday, July 16th, our branch held it’s 38th annual
sponsored walk of the Galtee Mountains. We would
like to thank all those who joined and supports us as
well as all those who helped to make this an
enjoyable and successful event. The efforts put in on
the day by all, including our volunteers, traffic and Many thanks to MS Ireland supporters Ciaran and
catering management, the Irish Red Cross Fermoy Aodh who cycled from Dingle to Conor Pass 23 times
Branch is much appreciated. Many thanks to the amounting to over 8,000m uphill! All to help raise a
owners who let us use their field for car parking. fantastic €1,983 for MS Ireland!
www.ms-society.ie 19SOCIAL CONNECTIONS 106
Social Connections mood on them. But becoming isolated can actually
make things worse and have profound effects on your
physical, mental and brain health.
Professor Sabina Brennan It is absolutely critical that you stay socially connected.
Resist the temptation to withdraw when stressed. Seek
We all have a fundamental support from friends, family and, if necessary, health
need for social connection. professionals. Choose wisely who you will spend time
Humans tend to perish with, you need support, not someone who will add to
in isolation. In general, your stress.
people with more social
ties live longer, have better Loneliness experienced over long periods may act as
health, are less depressed a chronic stressor, increasing the activity and number
and are less likely to of neural connections in your brain’s fear centre (the
experience impairment to amygdala), putting you on high alert and keeping you
their cognitive functioning in high self-preservation mode. Loneliness doesn’t just
than their counterparts with make you feel unhappy, it can make you feel unsafe
fewer connections. We are and interfere with your sleep, which can have a knock-
social creatures, being with on effect on your health and wellbeing.
other people and enjoying
their company is great for Try to cultivate a group of family, friends, neighbours or
brain health. work colleagues that you can regularly engage with to
exchange thoughts, ideas, worries, plans, hopes and
Your social interactions with friends, family, colleagues, dreams. Make mealtimes a shared occasion and an
neighbours and strangers bring about plastic changes opportunity for social engagement in your own home
in your brain, affecting both its structure and how it with your family or combine catching up with friends
functions. Unlike the physical stress of lifting weights over lunch or dinner. Interest groups, patient groups,
in the gym, which ultimately builds muscle and clubs, community groups, classes and courses are
strengthens bones, persistent social stress, such as great ways to meet people of all ages. Try to seek
prolonged social isolation and chronic loneliness, opportunities to engage with and nurture friendships
increases wear and tear throughout your body and with people with and without MS.
your brain. Neglecting social activities leads to
degeneration of the brain, something we all need to Consider pulling together a personal support team
avoid. to help to ward off isolation and keep you socially
engaged. It may feel like an effort sometimes to be
In contrast, socially engaged lifestyles are associated with friends and family, but you will reap the rewards
with the growth of new neurons and with an increase in in terms of your physical, mental and brain health.
the density of connections between them (synapses). Ask them to give you a little nudge now and then to
Social activity increases the size of your brain and remind you that being sociable benefits your brain
leads to more efficient use of your brain networks. Just health. Make sure you factor in some physical contact
ten minutes of social interaction can boost your brain too – don’t underestimate the importance of a hug.
performance. We are becoming increasingly time poor Studies show that lack of affectionate physical contact
and the demands of modern life can fool us into seeing is associated with higher levels of stress hormones.
socialising as a luxury pushed to the bottom of our But social
to-do list. But social interaction is fundamental to brain contact,
health and must be factored into your life. like giving
someone
Living with MS can increase your risk of becoming a hug or
socially isolated for numerous reasons. For example holding their
mobility issues might prevent you from getting out and hand can
about or cognitive issues may mean that you need to lower stress
work more from home or withdraw from the workplace hormones,
altogether. Stress or even depression associated lower blood
with your diagnosis may lead you to shut others out, pressure and
possibly because you don’t wish to inflict your low reduce pain.
20 www.ms-society.ieA Q U I C K G U I D E TO H E A LT H C A R E 106
A counsellor is a person with whom you can explore
A Quick Guide to ways of coping with personal difficulties. They can work
on a one-to-one basis, with couples, families or groups.
Healthcare Professionals
Specialist Health Services
Healthcare is provided on different levels, in the
community and in hospital. It can be a little tricky to Specialist health services are usually hospital based and
know who is who and where to turn with various issues. can include:
Here, we explain the roles of some of the key healthcare
professionals that make up the multi-disciplinary team. A Neurologist is a medical doctor specialising in
the diagnosis, treatment and management of disorders
Primary Care Team of the brain and nervous system. The role of the
neurologist includes assessing patients, giving advice,
Primary care teams work in local communities. Here are prescribing disease modifying therapies & medications
some of the roles in the Primary Care Team: for symptom management and conducting clinical
reviews. Neurologists can also make referrals to other
A General Practitioner (GP) is normally a first specialities.
point of contact for a broad range of common medical
An MS Nurse can assess physical, psychological and
conditions. They have the ability to make referrals to
social problems and advises on the need for intervention
specialist health services, such as neurology or urology.
by health and social services. The MS Nurse will answer
A Physiotherapist specialises in the assessment queries regarding medications.
and treatment of the movement problems that may
A Radiologist is a medical doctor who is trained in
affect the person with MS i.e. strength, joint movement,
carrying out and interpreting medical images such as
coordination, balance and mobility. Therapy aims to
MRIs and using them to treat health problems. Reports
improve movement and prevent any complications that
from imaging procedures are sent to the referring doctor
can arise.
to inform decision making.
An Occupational Therapist works to enable
An Ophthalmologist is a medical specialist that
and empower people to maintain abilities and remain
deals specifically with the structure, function, diseases
independent in daily activities this may involve finding
and treatment on the eye. The ophthalmologist may be
ways to improve and/or compensate for any deficits
involved in some cases, for example if a person has
relating to the symptoms of MS. They can advise on
experienced optic neuritis.
adaptations or alterations to homes or specialised
equipment such as aids and appliances to maximise A Rehabilitation Medicine Specialist is a medical
independence. doctor who advises on effective ways to improve,
maintain or recover skills to maintain independence.
A Speech and Language Therapist is
The Rehabilitation Specialist also advises people on the
responsible for the assessment, diagnosis and
facilities and equipment needed for them to successfully
management of both communication and swallowing
return to work, education or parental role.
difficulties. They help to identify and resolve specific
difficulties. A Pain Specialist works closely with other specialists
to ensure the appropriate management of pain in people
The Public Health Nurse is involved in clinical
living with MS who experience this symptom.
nursing care as well as health promotion, assessment
of needs and co-ordinating care such as personal and A Clinical Psychologist can offer specialised
home supports and respite. assessment and treatment such as the assessment
and treatment of a person’s cognitive, behavioural and
The Community Pharmacist dispenses
emotional needs.
medications, can offer information and explanations
on medication interactions. They can often assist with A Psychiatrist is a medical doctor concerned
common health concerns. with the study and treatment of persons affected with
emotional, cognitive and behavioural problems.
A Sensory and Physical Disability Liaison
Nurse assists people with physical and sensory The Clinical Nutritionist provides a therapeutic and
impairment. They provide advice, guidance and support nutritional advisory service to improve a person’s health.
regarding service availability, care and management.
They advise and assist with obtaining home support,
respite and residential services.
www.ms-society.ie 21You can also read
