- MS Society

MS Linc
Edition 35
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www.mssociety.org.uk/wales
MS nurse campaign reaches the Senedd
11 Get cheeky for MS
09 Wheelchairs
Welcome from MS Society Cymru Team
beating MS and
transforming the lives of
millions of people. Thank
you for all of your
wonderful donations to
date, and please continue
to support this work.
From the
Director’s
Chair
Happy New Year to you
all. Many of you will be
aware of, and will have
donated generously to
the MS Society’s Myelin
Repair research appeal.
This project has proved
that it is possible to
repair myelin and has
given us real hope of
We had some
disappointing news just
before Christmas that NICE
has again decided not to
recommend Gilenya, the
oral medicine for MS. This
is not a final decision,
however, so we will
continue to campaign for
this drug to be freely
available to all those who
might benefit from it.
The MS Society will be
holding its flagship MS Life
event in Manchester this
year on the weekend of
April 14/15. MS Life is
the MS Society's
biggest lifestyle event
for people affected by
MS, which has been
staged since 2006. You
can find more details on
our website.
Our other priorities will
include the telemedicine
project, a focus on
supporting people with
MS in employment and
a continuation of our
successful policy and
campaigning activities.
And, of course, we will
be continuing and
expanding our range of
fundraising activities.
So, 2012 looks set to
be another busy year
for MS Society Cymru!
Forthcoming events
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Saturday 14 - Sunday April - Join over 3,000 people from
across the UK at the biggest lifestyle
and information event in Manchester
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Thursday 19 April ,
Wednesday 25 April , The
Ivy Bush Hotel, Spilman Street,
Carmarthen, SA31 1LG - 10.30-4.30
Tuesday 17 April St
Mellons Hotel, Castleton, Cardiff,
CF3 2XR - 10.30-4.30
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Coleg Powys, Llanidloes Road,
Newtown - 10.30-4.30
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Sunday 06 May - MS with Attitude
Day - Red Ridge Centre, Cefn
Coch, Welshpooll, Powys, SY21
0AZ (more details on p3)
MS Linc is published by MS Society Cymru Temple Court, Cathedral Road Cardiff, CF11 9HA Telephone: 029 2078
6676 Fax: 029 2078 6666 mscymru@ mssociety.org.uk www.mssociety.org.uk/Wales
1139257
/ SC041990 and registered as a limited company in England and Wales 07451571
Professor the Baroness Ilora Finlay of Llandaff. Council Members: Ann Hodgson Chairman, Paul Pavia Vice
Chairman, Marion Davies, Catriona Fearn, Karen Jones, Richard Lewis, Catherine Meredith, Jackie Richards, Keith
Rollinson, Sarah Simson, Peter Wilkinson, Mark Williams. Printed by Chiltern Printers Ltd., Kelpatrick Road, Slough,
Berkshire, SL1 6DD. Photos on page 10 and 11 are attributed to the South Wales Argus
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Welcome from MS Society Cymru
Set yourself a challenge ... Join
us for MS with Attitude in Welshpool
The Adventure Day will
take place at the fantastic
Red Ridge Centre with a
range of activities on offer.
The theme for MS Week
2012 is “Get Active for
MS”, so why not challenge
yourself at this accessible
activity centre?
Further details will follow
and accommodation will
be provided. For more
information, please ring
Sue Jones on 01633
889290. Download a
booking form at
www.mssociety.org.uk .
Contact the
MS Society
Cymru Team
Policy, Press and
Campaigns Manager
029 2078 6676 - Ext 119
07825 725215
[email protected]
Service Development Officer
020 8438 0854
07767 641569
[email protected]
Fundraising Manager, Wales
029 2078 6676 - Ext 187
[email protected]
Executive Assistant
029 2078 6676 - Ext 147
[email protected]
Local Support Development
Officer
01633 889290
07920 547079
[email protected]
Area Development Officer North Wales
020 8827 0212
07920 429477
[email protected]
Telemedicine Project Officer
020 8438 0801
07774 820 022
[email protected]
Director for Wales
029 2078 6676
[email protected]
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News
Welsh volunteers nominated for UK award
Two inspirational people were shortlisted
for the coveted prize of Volunteer of the
Year, at the MS Society Awards.
Su Rollinson
at the
Newtown
MultiDisciplinary
Team clinic.
Paul Robinson from Swansea and Su
Rollinson from Montgomeryshire were two
of the three finalist at the ceremony on 27
September, but were unfortunately
pipped at the post by the third finalist who
won the top award.
Paul was shortlisted in recognition of his
work in establishing the Twocann
Tuesday Younger Person’s Support
Paul
Robertson
(left) with
Simon
Gillespie at
the 2011
MS Society
Cymru
Partnership
Day.
Group, whilst Su was nominated in
recognition of her work establishing the
Newtown Multi-Disciplinary Team clinic.
Even though they both just missed out on
the top prize, to get to the top 3 was a
recognition of their years of work.
, commented: “For a small country
like Wales to produce 2 out of the 3 most
inspirational volunteers in the MS Society
is testament to the good work that is
being done across our Nation.”
Learn more about the breakthrough in myelin repair
On 13 February the MS
Society is hosting an
Awareness Talk in
Swansea on the myelin
repair project.
Scientists from across the
UK, led by Professor Robin
Franklin at the Cambridge
Centre for Myelin Repair
and researchers from
Edinburgh have proved
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that it is possible to repair
myelin damage.
This is an exciting project
and offers the prospect of
a treatment to reverse
myelin damage and
therefore the effects of MS
within 10-15 years.
If you live in South Wales
and are interested in this
project then Professor
Franklin and his team will
be speaking at the Mercure
Swansea in Pheonix Way
from 6.30pm.
Please email
[email protected]
or ring 020 8438 0799 to
register and for more
information visit
www.mssociety.org.uk/events
Information
Do you need help coping with fatigue?
Fatigue is often the most problematic
symptom of MS which people face. It can limit
your lifestyle by forcing you to stop what you
want and it can impair your enjoyment of day
to day life.
MS Society branches in South Wales have worked with health professionals to set up
programmes to help people manage their fatigue. This year, branches in Newport,
Cardiff and Rhondda Cynon Taff have all funded courses in their areas. We caught up
with
at University Hospital
of Wales, who has led some of the courses.
explains: “MS Fatigue has a massive impact on people’s lives, and not only the
person with MS but their family and friends. It affects them physically, psychologically
and socially. I wanted to help people by increasing their understanding of fatigue and
enable them to live an active and fulfilling life.”
The courses were run in two hour sessions over five weeks at local leisure centres or
community venues in Cwmbran, Maindy (Cardiff) and Ystrad Mynach.
says, “The
group has received a very positive response
from all participants. People have learned
Paula’s top tips for
and developed new strategies to cope with
managing fatigue
their fatigue on a daily basis.”
Increase your understan
ding of
MS fatigue and educate
, one of the participants at
others
around you
the Maindy course, says that “Participation
in the group made us realise that fatigue is a
Learn to plan and priori
tise your
daily tasks
major problem in MS and that there are
ways that we can learn to cope with it.”
Pace yourself throughou
t your
day – set achievable go
als
Allow yourself to take res
ts and
MS Society Cymru is keen to roll out fatigue
utilise relaxation techniqu
es
– don’t
management courses to other parts of
feel guilty
Wales in 2012. If you’re interested, please
Seek support and advic
e from
get in touch with Ian Folks on 020 8438
your MS Team – don’t
let
fat
igue
0854, [email protected] .
dominate your life!
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Information
Branch & MS team
contact numbers
Bridgend
01656 772219
Cardiff & Vale
Ceredigion
Conwy
Denbigh &
District
02920 406690
01974 272696
01745 570212
01745 813262
Flintshire
Gwynedd & Ynys
Môn
Llandrindod
Wells
Montgomeryshire
01352 734200
01248 810515
Newport
Oswestry and
District
Pembrokeshire
Rhondda
Cynon Taff
01633 663777
01691 662123
Swansea &
District
Torfaen
Wrexham
01792 467854
01597 828709
01686 641843
01437 762174
01443 432823
01633 875273
01978 851686
Have you applied for
your short break yet?
The MS Society’s Short Break Fund can
be used to pay for a family holiday or
activity day, whilst the local council could
pay for any care and support costs.
In the Autumn, we published an article in
MS Linc 34 about the Short Break Fund giving
the example of Maxine from Cardiff, who had
applied for a grant to go to Bluestone resort in
Pembrokeshire.
Since then we have seen an increase in the
number of people applying for to the fund, but
we would like more people in Wales to apply.
Your MS Specialist Teams The Short Break Fund is available to pay for
029 2074 5018 or 029 2074 8161
01495 293295
01792 703234
01745 443022 (Andy Jones)
01745 443019 (Catriona Fearn)
07974 930541 (Denise Cooper)
07971 497902 (Kate Watkiss)
01432 378941
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accommodation and travel costs for your short
break, whilst your local council is responsible for
funding any Personal Assistants or other support
on the trip.
The MS Society has published a new guide
explaining how to get funding for a short break,
the standards you should expect, who can help
you get there, hire equipment and how to get
insurance.
You can download this at
www.mssociety.org.uk/resources. Alternatively
ring Matthew on 029 2078 6676 or email
[email protected] for more
information.
Information
Andy Jones: A day in the life of an MS nurse
We spoke to Andy Jones,
the MS nurse for North
Wales to get a better idea
of his role. Andy explained:
“I was appointed in 2001
as the first MS nurse for
North Wales. I cover the
whole region with an
estimated 1000 people
living with MS. My post is
managed by the Walton
centre, Liverpool. My
previous post was nurse
practitioner at Llandudno
General Hospital. I have a
background in neurology
mainly of having experience
of working on neurology
wards in Bath.”
Andy added: “I really enjoy
my job (most days). The
Andy Jones MS specialist
nurse for
North Wales.
most frustrating thing is
the pressure of managing
such a large caseload and
catchment area. I have a
clinic everyday of the week
and review 6-12 people.”
Andy’s key responsibilities
include:
- Starting patients on
disease modifying therapy
and given advice and
information around these
treatments.
- Management and
treatment of relapses.
- Support the clinics at
Bodelwyddan and Bangor.
- Contributing to the newly
diagnosed days.
If you live in North Wales
and would like to contact
Andy Jones, please ring
01745 443022 or email
[email protected]
.uk . He will return any calls
within 2-3 working days.
North Wales Service User Group - update
This new group has
recently got together to
create new opportunities
for meeting with a number
of service providers in both
health and social care.
The new group has met
with representatives of the
Wheelchair service in
Wrexham and was able to
raise concerns about
wheelchair waiting lists.
and Allan Young (Flintshire),
Nigel Partington
(Denbighshire) and
Susannah Robinson
The service user group
includes: Wendy Jones and (Gwynedd and Ynys Môn).
Steve Neal (Wrexham),
If you would like to get
Gwenda Fell, Tony Fell,
involved please contact
John Wild and Pauline Wild Urtha Felda on
(Conwy), Peter Knapper
[email protected] .
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Policy and Campaigns
End the unfair FES postcode lottery
Cardiff and Vale Health Board was
funding the treatment, but has recently
stopped any new patients using it whilst
they review its effectiveness.
“Three years ago NICE
declared FES to be a safe and clinically
effective treatment. Now one Health
Board has decided that it should conduct
its own review and collect its own
evidence. This is simply not fair.”
FES uses electrical current to stimulate
muscles to improve walking and increase
the speed of recovery after a relapse.
If you have been refused FES by your
Health Board, please ring 029 2078 6676
or email [email protected] .
MS nurse petitions to be considered by Assembly
Judi Rhys submitting our petition to
members of the Petitions Committee.
Thank you to everyone who has so far
filled in our petition to save MS nurse
posts. On 09 November Judi Rhys
submitted over 600 signatures to the
Welsh Petitions Committee meaning that
AMs will debate our concerns.
Since then we have added another 200
signatures, but we would like to pass
1000. If you haven’t already done so,
please complete the below petition slip
and send it back to us, so we can help
protect MS nurse posts.
"
Address: _________________________________________________________________
_________________________________________________________________________
Phone Number: _____________________Email: ________________________________
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"
Sign our petition - save MS nurse posts
We, the undersigned, believe that MS nurses provide a vital service for people living
with MS and their families and should be protected from Health Board cuts.
Name: ___________________________________________________________________
Policy and Campaigns
End unfair wheelchair waiting lists
In 2010 the National Assembly’s
Health Committee uncovered evidence
that some people had been waiting
over 18 months for a powered
wheelchair, whilst in parts of England,
the maximum wait was 18 weeks.
After almost 2 years and the election of
a new government, MS Society Cymru
is concerned that things have not
improved. We would like to hear from
you if you are waiting for a powered
wheelchair.
Help us tackle the unfair waiting
lists for powered wheelchairs.
"
Name: ___________________________________________________________________
Address: _________________________________________________________________
Phone Number: _____________________Email: ________________________________
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"
Are you waiting for a wheelchair?
- tell us your story!
Events and fundraising
Fundraiser completes 3 marathons
in 3 days for the MS Society
Paul Williams from Cwmfelinfach, ran
three marathons in three days to raise
money for Newport & District Branch in
his father’s memory.
Paul said: “I’ve always wanted to do
something for MS because of the family
connection and thought 'why not do three
in a row' to push myself." Paul’s father,
Ron Williams, lived with MS for 6 years.
Paul ran the 3 day Pembrokeshire Coastal
Challenge in November which involved
running 78.6 miles.
Paul Williams ran 3 marathons in 3
days in memory of his father.
Paul exceeded his target of £1,000 to
help people affected by MS in South East
Wales and is already planning his next
challenge - “something like a desert
marathon” said Paul.
Thank you to all of our fundraisers
Despite the economic
downturn and a peak in
unemployment across the
Welsh workforce, MS
Society Cymru’s
fundraising plan for 2011
has been a great success.
With thanks to our many
members, supporters,
fundraisers and volunteer
branches, we are pleased
to say that almost
£600,000 has been raised
across Wales through
individuals, support
groups, branches and
other activities.
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Fundraising Manager,
Iestyn Evans, said:
“Many factors have
contributed to our
success in 2011, though
thanks goes to our
dedicated community
fundraisers who have
contributed so much time,
enthusiasm and
commitment to supporting
people affected by MS in
Wales. I’m really looking
forward to 2012 for which
we have set our sights
even higher.”
Judi Rhys, Director for
Wales, added: “From
small gifts to large
donations, thousands of
people have helped fund
our work here in Wales.
“From funding grants,
providing yoga and
physiotherapy services to
organising awareness
events, money raised by
you is allowing us to
provide more support for
people living with MS up
and down the country.”
Events and fundraising
Getting ‘cheeky’ for MS Society Cymru
Enthusiastic fundraiser,
Vicky Prosser organised a
family fun day in aid of the
MS Society in November.
A child minder by
profession, she was
inspired after her sister
Kirsty, developed MS.
The event was held at
‘Cheeky Monkeys’ soft
play centre in Cwmbran
and attracted hundreds of
children and their parents.
Vicky Prosser (left) takes part in face painting just one of the fun activities at Cheeky Monkeys
in November.
The event has raised £620
so far. Vicky said: “I would
like to thank everyone who
helped make it a success.”
Swimming challenge raises almost £2K
Adventurer takes on 177 mile challenge
Dedicated branch
volunteer, Frances Lewis,
who has been described
by some as “the heartbeat
of the Newport Branch”,
organised a swimming
challenge in October.
sessions in Newport, she is including local MPs and
an inspirational fundraiser. raised £1,800.
Not only does Frances set
up the weekly drop-in
It was supported by
volunteers of all ages
The group swam the
equivalent length of the
English Channel (1,600
lengths in total) at the
Newport Sports Village.
This followed a cycle
challenge that her
husband, Lewin, undertook
in May that raised £1,500.
Many thanks to Frances
and all our other local
fundraisers.
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Forthcoming
events
H a ve fun a nd
help beat MS
Abergavenny Three Peaks Trial
31 March
Fancy a stroll? Why not take on the
Blorenge, Skirrid Fawr and mighty
Sugar loaf at foot of the Brecon
Beacon National Park?
Snowdonia Trek
22 April
Climb 1,085m, above the stunning
Snowdonia National Park on Mt.
Snowdon, Wales’ highest mountain.
The Wales Swim
8 June
Splash for cash! Take a dip and join
this stunning 1.9km swim around
Tenby otherwise known as the
‘Jewel in Pembrokeshire’s crown’.
Charity Golf Day
21 June
Tee-off with your team.
18 holes of golf, at the vertically
challenging Mountain Ash Course.
Sky Dive for MS
5 and 6 May
Not for the fainted hearted!
This adrenalin-filled challenge is
guaranteed to get the blood pumping
and the endorphins flowing.
MS Awareness Week
30 April to 6 May
Get Active for MS! Make your own
‘Cake Break’ with Ainsley Harriott and
help to ‘Get Loud about MS’.
Newport Zip slide
15 July
The Newport Transporter Bridge
stands proudly at 50 metre high.
Fly like a bird on one of the country’s
highest zip slides.
Firewalk
MS Awareness Week, May
Would you walk on fire to beat MS?
Face your fears and walk with us
across 20 feet of burning embers.
Cardiff Half Marathon
14 October
Join over 10,000 people for this
flat half marathon through the
Welsh capital.
Chester-Liverpool Bike Ride
8 July
See the City’s sights! Choose your
distance and take part in this fun,
fitness and family friendly challenge.
This is just a taster of the ways to get involved. For more information
or to register today, please visit mssociety.org.uk/fundraising,
email [email protected] or call our team on 029 2078 6676.
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