11.08.2020 Views

MSWA Bulletin Winter 2020

Telehealth at MSWA, Feedback from Customer survey, Eating mindfully, Research roundup

Telehealth at MSWA, Feedback from Customer survey, Eating mindfully, Research roundup

SHOW MORE
SHOW LESS

Create successful ePaper yourself

Turn your PDF publications into a flip-book with our unique Google optimized e-Paper software.

THE OFFICIAL MAGAZINE OF <strong>MSWA</strong><br />

<strong>Winter</strong> <strong>2020</strong><br />

mswa.org.au<br />

Wendy<br />

Diane<br />

Lisa<br />

Rebekah<br />

Hamilton Hill<br />

<strong>MSWA</strong><br />

KEEPING YOU<br />

CONNECTED.<br />

INSIDE<br />

Brett<br />

/ Telehealth at <strong>MSWA</strong><br />

/ Feedback from<br />

Customer Survey<br />

Occupational Therapy<br />

/ Eating Mindfully<br />

/ Research Roundup


NURSING<br />

WILSON CENTRE<br />

29 Parkhill Way 9365 4888<br />

Fax 9451 4453<br />

Freecall 1800 287 367<br />

See Health Team Dept contacts on this page<br />

MEMBER SERVICES DIRECTORY<br />

GENERAL MANAGER –<br />

MEMBER & CLIENT SERVICES<br />

Nicola Washington 9365 4840<br />

MANAGER OF ALLIED HEALTH SERVICES<br />

Carol Chong 9365 4873<br />

NDIS TEAM 9365 4824<br />

OUTREACH GROUPS<br />

Wilson Outreach 9365 4830<br />

Beechboro Lodge 9377 7800<br />

Southside Outreach 9592 9202<br />

Albany Outreach 6154 5149<br />

Bunbury 6454 2800<br />

GENERAL MANAGER - STRATEGIC<br />

SUPPORTS AND RESIDENTIAL OPTIONS<br />

Sue Shapland 6454 3174<br />

MARGARET DOODY RESPITE HOUSE<br />

Manager, Chris Rush 9385 9574<br />

FERN RIVER ACCOMMODATION<br />

Manager, Danuta Figurska 9356 2747<br />

HAMILTON HILL ACCOMMODATION<br />

Manager, Jayne O’Sullivan 9331 5780<br />

TREENDALE GARDENS<br />

RESPITE & ACCOMMODATION<br />

Manager, Linda Kidd 9725 9209<br />

BUTLER SUPPORTED<br />

ACCOMMODATION FACILITY<br />

Manager, Chris Rush 6154 5120<br />

CONTACT US<br />

If you would like to comment on anything<br />

you read in this <strong>Bulletin</strong> please email<br />

bulletin@mswa.org.au or write to<br />

<strong>MSWA</strong>, Locked Bag 2, Bentley DC WA 6983<br />

General feedback or complaints please<br />

contact Liz Stewart 6454 3173 or<br />

feedback@mswa.org.au<br />

EDITORIAL COMMITTEE<br />

Greg Brotherson (Editor), Ros Harman<br />

(Guest Editor), Marcus Stafford (CEO),<br />

Paul Cavanagh, Sue Shapland,<br />

Nicola Washington, Libby Cassidy,<br />

Jamey Claffey, Carol Chong,<br />

Aileen Ward and Geoff Hutchinson.<br />

The Editor welcomes unsolicited submissions.<br />

All articles are subject to a reviewing process.<br />

The views expressed are those of the authors<br />

and do not necessarily reflect the view of<br />

<strong>MSWA</strong>’s staff, advisors, directors or officers.<br />

Our MS nurses are usually the first point of contact after the neurologist’s diagnosis of MS.<br />

VANISHREE CHETTI, MANAGER: 9365 4818 OR COMMUNITY NURSE: 9365 4888<br />

PHYSIOTHERAPY<br />

Our team aims to provide treatment interventions to develop and maintain mobility<br />

and function.<br />

DAVE HATHORN, MANAGER: 9365 4837 OR PHYSIO DEPARTMENT: 9365 4834<br />

OCCUPATIONAL THERAPY<br />

Occupational Therapists enable Members to continue their work and other interests<br />

for as long as possible through advice, aids and equipment.<br />

ILISSA LIEW, MANAGER: 9365 4804 OR OT DEPARTMENT: 9365 4888<br />

SPEECH PATHOLOGY<br />

Our Speech Pathologists provide support by assessing, diagnosing and creating<br />

individualised treatment programs for Members who experience swallowing and/or<br />

communication difficulties.<br />

PAMELA WINDRAM, MANAGER: 6454 3140<br />

DIETETICS<br />

Dietitians are university-qualified nutrition experts who promote general health and<br />

disease prevention/management through dietary changes.<br />

PAMELA WINDRAM, MANAGER: 6454 3140<br />

COUNSELLING, PEER SUPPORT & HEALTH EDUCATION<br />

Talking with a Counsellor creates a safe, respectful and confidential environment for<br />

you and those close to you to explore options, create change or gain understanding<br />

about your life. We have a Peer Support & Health Education Coordinator who organises<br />

peer connection & events and supports health and wellness education services.<br />

TO MAKE AN APPOINTMENT PLEASE CALL: LISA PAPAS, MANAGER: 9365 4836<br />

OR COUNSELLING DEPARTMENT: 9365 4811<br />

SOCIAL WELFARE<br />

Social Welfare Officers assist Members and their families to access services<br />

and supports to remain living independently at home. They specialise in case<br />

management, advocacy and sourcing funding options.<br />

KATH KNIGHTS, MANAGER: 9365 4835<br />

INDIVIDUAL OPTIONS<br />

We provide long-term and time limited in-home supports including assistance with<br />

personal care for people with MS, to help them remain in their homes. Care and<br />

supports are provided through a combination of funding from the Department of<br />

Communities - Disability Services, and our own fundraising efforts.<br />

AILEEN WARD, MANAGER: 9365 4851<br />

CUSTOMER ENGAGEMENT DEPARTMENT<br />

Our experienced teams will provide you with personalised support right throughout<br />

your NDIS journey. From helping you to access the NDIS to working with you to get the<br />

most from your plan, our trained staff are here to help.<br />

GEOFF HUTCHINSON, MANAGER CUSTOMER ENGAGEMENT: 9365 4879<br />

CAMPS & RECREATION<br />

<strong>MSWA</strong> provides separate recreation camps for Members, carers, and families, primarily<br />

funded by Lotterywest, and for a nominal cost to participants. These camps provide a<br />

break from daily routines, and strengthen friendships and support networks.<br />

COORDINATOR FOR CAMPS & RECREATION: 9365 4843<br />

CONTENTS<br />

LETTER FROM THE EDITOR. ............... 3<br />

FROM THE DESK OF THE CEO .............. 4<br />

GENERAL MANAGER STRATEGIC SUPPORTS<br />

AND RESIDENTIAL OPTIONS . .............. 5<br />

GENERAL MANAGER<br />

MEMBER & CLIENT SERVICES. ............. 6<br />

<strong>MSWA</strong> RESEARCH CONTRIBUTIONS. .......... 7<br />

RESEARCH ROUND UP ................. 8-10<br />

HAVE YOU HAD YOUR FLU SHOT?. ...........11<br />

WAIT TIMES REMAIN DESPITE FOCUS . ...... 12<br />

EATING MINDFULLY. .................... 13<br />

PREVENTING FALLS AND TRIPS . ........... 14<br />

COMMUNICATING WITH THE USE<br />

OF TECHNOLOGY: WHAT’S NEW?. ........... 15<br />

TELEHEALTH AT <strong>MSWA</strong>. .................. 16<br />

I MET A DOG. ......................... 17<br />

REACHING ACCEPTANCE AND<br />

LOOKING TO THE FUTURE. ............ 18-19<br />

WHAT’S ON ....................... 20-21<br />

<strong>MSWA</strong> FEEDBACK . ..................... 21<br />

FEEDBACK FROM CUSTOMER SURVEY . ...22-23<br />

<strong>MSWA</strong>’S READATHON HEROES. .............24<br />

VOLUNTEER UPDATE. ................... 26<br />

MARY SAYS CHEERIO. ................... 27<br />

HAMILTON HILL ACCOMMODATION NEWS. ....28<br />

TREENDALE GARDENS NEWS . ..............28<br />

WHAT ABOUT THE CAMPS?. ............... 29<br />

STAYING CONNECTED TO OUTREACH . .........30<br />

COVER STORY . . . . . . . . . . . . . . . . . . . . . . . . . . 31<br />

2


WELCOME<br />

Since our autumn <strong>Bulletin</strong> was published the main topic of conversation and news has been<br />

the Coronavirus, COVID-19. Newspapers and television programs have talked of little else<br />

and we have gone through a couple of evolutions of restrictions and rules designed to keep<br />

us safe. Fortunately, numbers in Western Australia have been relatively low, and the social<br />

distancing and travel restrictions seem to have helped.<br />

Here at <strong>MSWA</strong>, our CEO and<br />

management team have been<br />

working hard to continue providing<br />

necessary services to people<br />

with MS and other neurological<br />

conditions. Some changes have<br />

occurred: group sessions such<br />

as physio and outreach were<br />

suspended in line with Government<br />

guidelines, one-on-one sessions<br />

have continued where possible and<br />

phone contact has enabled staff to<br />

keep in touch with people. Some<br />

services have been transitioned<br />

to Telehealth, including services<br />

such as counselling, general<br />

nursing advice and speech therapy.<br />

We’ve also successfully delivered<br />

physiotherapy and occupational<br />

therapy to many Members and<br />

Clients. <strong>MSWA</strong> staff have been<br />

proactive and energetic in ensuring<br />

that the needs of people during<br />

these stressful and challenging<br />

times are being met.<br />

It is very reassuring that the people<br />

of WA continue to support <strong>MSWA</strong><br />

by purchasing raffle and lottery<br />

tickets as usual. <strong>MSWA</strong> continues<br />

to be a financially viable and<br />

successful organisation, supporting<br />

people living with multiple sclerosis<br />

and other neurological conditions.<br />

The management and staff<br />

have taken on the challenges of<br />

this pandemic with creativity,<br />

innovation, and the ongoing<br />

resolution to be a bastion of support<br />

during these trying times.<br />

The CEO provides regular updates<br />

to staff and Board directors about<br />

how we are tracking and makes sure<br />

that the communication channels<br />

are open and transparent. We can<br />

be grateful to have such a skilful<br />

and dedicated team of employees<br />

at <strong>MSWA</strong> who are ensuring the<br />

support of Members and Clients,<br />

and the ongoing success of<br />

the organisation.<br />

As interim editor of <strong>Bulletin</strong> I would<br />

like to thank everyone for their<br />

patience, adaptability and ongoing<br />

support. We look forward to a time<br />

in the future when this pandemic<br />

will have passed, and life will resume<br />

as it was before, albeit with a new<br />

awareness of how to survive tough<br />

times and support each other.<br />

Enjoy this edition and its news<br />

about what is happening at <strong>MSWA</strong>.<br />

Inside you will read updates<br />

from our various managers from<br />

different areas, and also Members’<br />

stories. Enjoy the story about Mary<br />

Cross, who recently retired as an<br />

<strong>MSWA</strong> volunteer, aged 90. All the<br />

best, Mary!<br />

ROS HARMAN<br />

GUEST EDITOR<br />

3


FROM THE DESK<br />

OF THE CEO<br />

MARCUS STAFFORD<br />

CEO<br />

Throughout the COVID-19<br />

restrictions of the last quarter, you<br />

may have heard me say “We’re here<br />

and we’re strong”. As we begin to<br />

emerge from the uncertainty, I shall<br />

now add the extension, “and we’re<br />

looking to the future”.<br />

Indeed, this winter feels like a type<br />

of springtime, as we welcome<br />

events back on the <strong>MSWA</strong> calendar<br />

and anticipate opening the doors of<br />

our Outreach Centres in July.<br />

The month of August is all about<br />

Readathon, which is a fantastic way<br />

to get you, and the kids in your world,<br />

reading and supporting <strong>MSWA</strong>.<br />

And a date has been confirmed for<br />

our <strong>MSWA</strong> Ocean Ride and with it<br />

the annual Members’ Ride.<br />

We’ve introduced a new Hip Hop<br />

Yoga event, which will fundraise<br />

for Customers with all neurological<br />

conditions. The inaugural session<br />

is happening virtually on a Zoom<br />

screen near you on 30 July. Be sure<br />

to read the What’s On section to<br />

find out more.<br />

On a service delivery level,<br />

solutions that were developed<br />

under the COVID-19 restrictions,<br />

such as Telehealth, are now<br />

being made permanent options,<br />

wherever appropriate. The silver<br />

lining of recent adversity was an<br />

acceleration in our approach and<br />

ability to combine technology and<br />

service, something I am pleased to<br />

continue to put at the forefront of<br />

what we do.<br />

On another forward-looking note,<br />

the latest preliminary research<br />

on COVID-19 in people with MS<br />

offers some reassurance. I’d like<br />

to share with you a message<br />

from Professor Bill Carroll AM,<br />

Neurologist, President of the World<br />

Federation of Neurology and <strong>MSWA</strong><br />

Board Member:<br />

“The evolving evidence (largely<br />

Italian based 1 ) and anecdotal<br />

evidence from other sources<br />

(respected) suggest that people<br />

with MS who are currently stable<br />

on Disease Modifying Therapies are<br />

not at increased risk of contracting<br />

COVID-19 nor is any one DMT likely<br />

to increase the same risk.<br />

“Severe COVID-19 and death relate<br />

more to the known risk factors of<br />

comorbidity and age. While this<br />

statement is based on relatively<br />

low numbers, it is encouraging<br />

and reassuring.”<br />

<strong>MSWA</strong> will continue to<br />

monitor any new research<br />

coming to light and<br />

keep you informed. If you<br />

do have any concerns<br />

about your health or your<br />

treatment regime, speak<br />

to your neurologist and/or<br />

GP for tailored advice.<br />

This quarter also marks the end of<br />

the financial year and, as ever, I will<br />

provide you with a comprehensive<br />

update on <strong>MSWA</strong>’s performance in<br />

the next edition of <strong>Bulletin</strong>, after our<br />

Annual General Meeting. However,<br />

I will say that, all things considered,<br />

we have left 2019/<strong>2020</strong> in a position<br />

of continued strength.<br />

As you know, as we continue to<br />

serve people with neurological<br />

conditions; we’re here, we’re strong<br />

and we’re looking to the future.<br />

1<br />

Lancet Neural <strong>2020</strong>, Published Online April 29, <strong>2020</strong> https://doi.org/10.1016/ S1474-4422(20)30147-2<br />

4


STRATEGIC SUPPORTS<br />

AND RESIDENTIAL<br />

OPTIONS<br />

SUE SHAPLAND RN, BN, MSCN<br />

GENERAL MANAGER<br />

STRATEGIC SUPPORTS AND<br />

RESIDENTIAL OPTIONS<br />

“Good luck is when opportunity<br />

meets preparation, while bad<br />

luck is when lack of preparation<br />

meets reality. ”<br />

Mario Andretti.<br />

Well we have all been through many<br />

changes and new territory since our<br />

last <strong>Bulletin</strong>! COVID-19 has been a<br />

real challenge on many fronts but<br />

overall, we have been lucky here<br />

in Australia, and in WA. One of the<br />

benefits of being an island and a<br />

long way from many places I guess!<br />

Whilst we had our ‘wings clipped’<br />

and routines disrupted to an extent<br />

most of us have never experienced,<br />

we have not had the large case<br />

numbers and levels of illness and<br />

deaths seen overseas including of<br />

course, the UK and the USA.<br />

Together, under good leadership<br />

and cooperation, with most people<br />

following Government advice, we<br />

are now starting to return to what<br />

is being termed ‘our new normal’,<br />

including the football season<br />

which has been sadly missed by<br />

most! <strong>MSWA</strong> regrettably had to<br />

cancel several of our popular events<br />

including Step Up and our annual<br />

MS Awareness Week Forum, but<br />

they will be back!<br />

The restrictions imposed led to new<br />

creativity, born out of necessity, as<br />

we turned to video conferencing<br />

and linking in by many different<br />

avenues – Zoom, Webex, Skype, etc,<br />

with <strong>MSWA</strong> staff and many GPs<br />

embracing these changes. One of<br />

the better outcomes has been some<br />

increases in these connections,<br />

as people were physically isolated<br />

from their friends and loved ones,<br />

and absence has made the heart<br />

grow fonder as we now reconnect<br />

wherever we can. There has been<br />

a large spike in home cooking and<br />

crafts, and parents have found a<br />

new respect for teachers! Hopefully<br />

some lasting good changes will<br />

remain with us beyond COVID-19.<br />

We had to close our popular respite<br />

homes for several weeks, but they<br />

are now back in operation and the<br />

staff are keen to reconnect with<br />

known customers and welcome<br />

new ones. Our accommodation<br />

facilities have had restrictions<br />

imposed, including reduced visitors,<br />

reduced community outings and<br />

the flu vaccination requirement for<br />

staff and visitors as resident and<br />

staff health and safety is paramount.<br />

We have had to delay the start<br />

of construction of our Albany<br />

facility but look forward to that<br />

commencing in 2021.<br />

The research community<br />

has been impacted, with<br />

some labs being closed<br />

and access to participants<br />

reduced, but this is now<br />

starting to ramp up<br />

again. Once again <strong>MSWA</strong><br />

is looking forward to<br />

supporting research into<br />

MS and other neurological<br />

conditions, aiming to<br />

better the record donation<br />

of $3.5 million for this year.<br />

I hope you enjoy this edition of<br />

<strong>Bulletin</strong> and that you and yours stay<br />

safe and well.<br />

5


MEMBER &<br />

CLIENT SERVICES<br />

NICOLA WASHINGTON<br />

GENERAL MANAGER<br />

MEMBER & CLIENT SERVICES<br />

Welcome to the winter<br />

edition of our Member &<br />

Client Services <strong>Bulletin</strong>.<br />

We have certainly been through<br />

a strange time over the past few<br />

months and one that has impacted<br />

the world in a way that no one could<br />

have predicted.<br />

I am sure you will agree that we<br />

have been lucky in Australia not to<br />

have seen the numbers that other<br />

countries have experienced with<br />

COVID-19, which has enabled us<br />

to get back to some sort of normal<br />

quicker than originally expected.<br />

The great news is that our group<br />

and social support activities have<br />

resumed, including the return of<br />

Outreach at designated Service<br />

Centres. I know our Members<br />

and our staff have missed being<br />

together and it is great to engage<br />

with everyone again, albeit at an<br />

appropriate distance.<br />

As we get back to ‘the new normal’<br />

there are some things that we will<br />

keep in place to assist with service<br />

delivery. Our online Telehealth<br />

will remain in place as an option<br />

for delivery of services where it<br />

is appropriate to do so. This will<br />

provide additional choice to you,<br />

the Customer, on how you receive<br />

your services.<br />

We have all become used to<br />

communicating in different ways<br />

through Zoom, Webex, Teams,<br />

FaceTime etc which have all<br />

proved to be great platforms to<br />

communicate across and I do<br />

not see these disappearing any<br />

time soon.<br />

Our Customer Satisfaction Survey<br />

has been analysed and the results<br />

are reported on pages 22-23. Thank<br />

you to everyone who completed<br />

the Survey. We are already working<br />

on what we can improve. One of<br />

the areas we are focused on is<br />

communication. We are committed<br />

to providing you with regular<br />

touchpoints and our Customer<br />

Engagement team will be keeping<br />

in contact with you to get your<br />

feedback and your preferences<br />

on communication.<br />

The NDIS March quarterly results<br />

summary:<br />

/ 27,780 participants have entered<br />

the scheme since July 2013. 27,379<br />

of these continue to be active.<br />

/ 12,349 active participants are<br />

receiving supports for the<br />

first time.<br />

/ In the current quarter, 3,151<br />

participants have entered<br />

the scheme.<br />

/ 6,645 plans have been reviewed<br />

this quarter.<br />

/ 3,515 access decisions have been<br />

made in the quarter, 2,828 of<br />

which met access and are still<br />

active as at 31 March <strong>2020</strong>.<br />

/ 208 (6.6%) of the new active<br />

participants this quarter<br />

identified as Indigenous, taking<br />

the total number of Indigenous<br />

participants in WA to 1,685 (6.2%).<br />

/ 365 (11.6%) of the new active<br />

participants this quarter are<br />

Culturally and Linguistically<br />

Diverse (CALD), taking the total<br />

number of CALD participants in<br />

WA to 2,265 (8.3%)<br />

/ North East Metro has the highest<br />

number of active participants<br />

(5,240), while Goldfields-Esperance<br />

has the lowest (431).<br />

The number of participants in the<br />

NDIS has grown with over 12,000<br />

receiving support for the first time<br />

which is great news. Wait times<br />

continue to be an area needing<br />

review as outlined on page 12.<br />

If you do have any questions<br />

regarding your NDIS plan please<br />

do not hesitate to contact<br />

ndisenquiries@mswa.org.au. Our<br />

team of dedicated staff are always<br />

here to help you navigate any<br />

problem or question you may have.<br />

I would like to take this opportunity<br />

to thank our Customers for being<br />

flexible and working with us over<br />

the past few months to maintain<br />

our service delivery, albeit in a<br />

different way, and to our incredible<br />

staff for their commitment, hard<br />

work and dedication.<br />

Thank you.<br />

6


RESEARCH<br />

<strong>MSWA</strong> RESEARCH<br />

CONTRIBUTIONS<br />

Professor Sulev Kōks with Professor<br />

Carolyn Young (who designed and leads<br />

the study in the UK). Taken when she<br />

visited the Perron Institute last year.<br />

Recruitment well under way for TONiC study<br />

The Perron Institute is continuing its<br />

recruitment of people with motor<br />

neurone disease (MND) for the<br />

pilot TONiC study, a project proudly<br />

supported by <strong>MSWA</strong>.<br />

TONiC (Trajectories of Outcome<br />

in Neurological Conditions) is<br />

examining factors influencing<br />

quality of life for people with<br />

neurological conditions. It<br />

originated in the UK and is the<br />

largest study of its kind in the world.<br />

The aim is to improve services for<br />

people living with conditions such<br />

as MND by identifying quality of life<br />

aspects that are important to them,<br />

but which may be underestimated<br />

by current service provision.<br />

The WA TONiC study is led by<br />

Professor Sulev Kōks, head of<br />

Genetic Epidemiology Research<br />

at the Perron Institute and<br />

Murdoch University.<br />

With the help of the Motor<br />

Neurone Disease Association of<br />

WA in reaching out to potential<br />

participants, there has been a good<br />

response, with questionnaires sent<br />

out and some already completed<br />

and returned.<br />

“We are pleased with the initial<br />

response from patients in the<br />

community so far,” Professor Sulev<br />

Kōks said.<br />

“Feedback from participants in the<br />

pilot study will be used to tailor<br />

the questionnaire for Western<br />

Australian patients in the next stage<br />

of the project.”<br />

CEO Marcus Stafford AM said he<br />

was pleased to be able to support<br />

this important research.<br />

“Although this study is initially<br />

targeting MND, I know the team<br />

have the intention to broaden the<br />

research to include people with<br />

multiple sclerosis and possibly<br />

other neurological conditions,” said<br />

Mr Stafford.<br />

“This is fantastic. It’s<br />

great to be able to fund<br />

research that looks into a<br />

debilitating disease such<br />

as MND, and the fact the<br />

research can be extended<br />

to a wider group only<br />

makes it that much more<br />

exciting. Watch this space.”<br />

For more information on the study,<br />

please contact Leanne Jiang:<br />

leanne.jiang@perron.uwa.edu.au or<br />

see the Perron Institute and <strong>MSWA</strong><br />

Facebook pages.<br />

7


RESEARCH<br />

RESEARCH<br />

ROUND UP<br />

SUE SHAPLAND RN, BN, MSCN<br />

GENERAL MANAGER STRATEGIC SUPPORTS<br />

AND RESIDENTIAL OPTIONS<br />

FROM MULTIPLE SCLEROSIS NEWS TODAY<br />

Read more at:<br />

multiplesclerosisnewstoday.com<br />

Ability to ‘Create’ Astrocytes<br />

Supports Their Damaging Role in<br />

MS, Like Diseases, Patricia Inacio PhD.<br />

A new study shows an inflammatory<br />

environment can turn astrocytes,<br />

key supportive cells for neurons,<br />

into their killers, fostering the<br />

progression of neurodegenerative<br />

diseases like MS.<br />

In a first, researchers at the<br />

New York Stem Cell Foundation,<br />

created astrocytes derived from<br />

human stem cells (hIPSCs). They<br />

then placed these cells in an<br />

inflammatory environment and<br />

observed what happened.<br />

Following inflammatory stimulation,<br />

the astrocytes become reactive,<br />

dysfunctional, and toxic, triggering<br />

neuronal death — all of which opens<br />

‘a window for the study of their role’<br />

in neurodegenerative disorders.<br />

The group, and others, look<br />

forward ‘to using our new system<br />

to further explore the intricacies of<br />

astrocyte function in Alzheimer’s,<br />

multiple sclerosis, Parkinson’s, and<br />

other diseases’ in the hope it will<br />

‘point us toward new treatment<br />

opportunities’ that might slow or<br />

prevent neurodegeneration.<br />

Australian Review Suggests<br />

‘Gut Mucus May Help Ease MS,<br />

Other Neurological Diseases,<br />

Patricia Inacio PhD.<br />

An Australian review of 113<br />

neurological, gut and microbiology<br />

studies, by researchers at the<br />

RMIT University in Melbourne,<br />

suggests tweaking the protective<br />

properties of the gut mucus, a<br />

layer lining the inside of the gut,<br />

to boost the proliferation of good<br />

bacteria potentially could halt<br />

the development of neurological<br />

disorders, like MS.<br />

The gut is lined with a mucus layer,<br />

key for a healthy gastrointestinal<br />

system, with properties adapted<br />

to each segment. In the small<br />

intestine it’s more porous, to<br />

facilitate nutrient absorption, while<br />

in the colon it becomes thicker,<br />

acting as a physical barrier against<br />

harmful bacteria but allowing the<br />

natural, beneficial community of<br />

microbes living in the gut – the gut<br />

microbiome – to thrive.<br />

The gut is innervated not only by<br />

the autonomic nervous system, but<br />

its own network of neuronal cells<br />

that regulate the functions of the<br />

gastrointestinal tract, called the<br />

enteric nervous system (ENS).<br />

Increasing evidence shows<br />

that changes in the gut and its<br />

microbiome have far-reaching<br />

implications and are commonly<br />

found in people with neurological<br />

disorders, such as autism,<br />

Parkinson’s and Alzheimer’s<br />

disease, and also MS.<br />

“Mucus is a critical protective layer<br />

that helps balance good and bad<br />

bacteria in your gut but you need<br />

just the right amount – not too little<br />

and not too much,” said Elisa Hill-<br />

Yardin in a press release.<br />

Hill-Yardin is a professor at School<br />

of Health and Biomedical Sciences,<br />

RMIT University and the study’s<br />

senior author.<br />

“Researchers have previously shown<br />

that changes to intestinal mucus<br />

affect the balance of bacteria in the<br />

gut but until now, no one has made<br />

the connection between gut mucus<br />

and the brain,” Hill-Yardin said.<br />

She believes that “microbial<br />

engineering, and tweaking the gut<br />

mucus to boost good bacteria, have<br />

potential as therapeutic options for<br />

neurological disorders.”<br />

8


HERE WE PROVIDE SOME SUMMARIES OF RESEARCH SOURCED FROM WEBSITES IN AUSTRALIA<br />

AND AROUND THE WORLD; WE HOPE IT’S OF INTEREST TO YOU.<br />

WE HAVE INCLUDED BOTH MS SPECIFIC AND OTHER NEUROLOGICAL RESEARCH UPDATES.<br />

READ MORE AT<br />

<strong>MSWA</strong>.ORG.AU/RESEARCHUPDATE<br />

FROM MS RESEARCH AUSTRALIA<br />

Read more at: msra.org.au<br />

Cutting Edge Technologies Help<br />

Discover Unknown Cells in the<br />

Human Body.<br />

Australian scientists have<br />

discovered nine subpopulations of a<br />

subtype of B cells (a type of immune<br />

cell) which differ in people with MS<br />

compared to those who don’t have<br />

MS. They also differed in people<br />

with active MS compared to those<br />

with inactive MS.<br />

The human body is made up of<br />

many different types of cells; the<br />

exact number of types is unknown.<br />

More and more subtypes of cells<br />

are being discovered as technology<br />

improves. MS Research Australia<br />

funded researchers have been<br />

using the latest technologies,<br />

which is providing unprecedented<br />

insights into changes in particular<br />

subtypes of immune cells that<br />

occur in people with MS.<br />

The group of Sydney researchers<br />

have been studying the immune<br />

system and examining and<br />

characterising the proteins on the<br />

surface of B cells and made some<br />

exciting discoveries.<br />

These findings highlight the<br />

exciting possibilities new<br />

technologies bring, and that<br />

measuring these B cells may help us<br />

understand when a person with MS<br />

might develop active forms of the<br />

disease and how various treatments<br />

might be working, including UV<br />

radiation therapy.<br />

The group has identified previously<br />

unknown subsets of cells which<br />

correlate with MS attacks on the<br />

central nervous system, suggesting<br />

that some of these subtypes of<br />

cells are potential targets for highly<br />

targeted therapies which could<br />

impact the progression of MS.<br />

Copper Delivery as a Potential<br />

Treatment for MS, Associate<br />

Professor Peter Crouch, University<br />

of Melbourne.<br />

One of the laboratory models used<br />

to study MS is based on treating<br />

mice with a compound that binds<br />

to copper in the body, which causes<br />

loss of myelin. However, no research<br />

has yet investigated exactly how<br />

the compound causes the myelin<br />

cells to die in mice and whether this<br />

provides clues as to how myelin is<br />

damaged in MS.<br />

Using techniques previously used<br />

for his research into MND, Associate<br />

Professor Crouch will determine<br />

whether MS-affected tissue in mice<br />

and in people with MS is functionally<br />

deficient in copper.<br />

The project receives funding<br />

support from The Trish MS Research<br />

Foundation.<br />

In this study, Associate Professor<br />

Crouch will examine both the levels<br />

of the copper dependent enzymes<br />

in the tissue and their actual<br />

copper dependent enzymatic<br />

activity. Differences between these<br />

two measurements can reveal<br />

functional copper deficiency<br />

despite no change in copper levels<br />

within the tissue.<br />

This project will be the first to assess<br />

the specific activity of multiple<br />

copper dependent enzymes in<br />

a laboratory model of MS and in<br />

post-mortem tissue from people<br />

with MS. It will therefore be the<br />

first to provide clear biochemical<br />

data to indicate whether there is<br />

a link between functional copper<br />

deficiency and loss of myelin in MS.<br />

Associate Professor Peter Crouch (right)<br />

& Dr James Hilton (left), University of Melbourne.<br />

9


RESEARCH<br />

FROM THE MS TRUST UK<br />

Read more at: mstrust.org.uk<br />

Preliminary research on Covid-19<br />

in people with MS in Italy offers<br />

some reassurance.<br />

People with MS who contracted<br />

COVID-19 did no worse than the<br />

general population according to<br />

preliminary results from Italy.<br />

Researchers in Italy have been<br />

collecting data to understand<br />

the relationship between MS and<br />

COVID-19, trying to understand<br />

whether having MS increases the<br />

risk of a more severe COVID-19<br />

infection, and whether taking<br />

disease modifying drugs may add<br />

any extra risk.<br />

The Italian MS Society (AISM), the<br />

Italian MS Foundation (FISM), and<br />

the MS Study Group of the Italian<br />

Neurological Society set up an<br />

online platform to record and collect<br />

data about people with MS in Italy,<br />

who were diagnosed with COVID-19<br />

or developed symptoms (suspected<br />

COVID-19). MS neurologists across<br />

Italy were asked to input data and<br />

share patient outcomes.<br />

Early results from the data collected<br />

have now been published; this<br />

includes 232 people with MS who<br />

tested positive for COVID-19 (57<br />

people) or have suspected COVID-19<br />

(175 people). Of the 232 people,<br />

211 were taking a disease<br />

modifying drug.<br />

They recorded the severity of<br />

COVID-19 in these 232 people:<br />

/ 222 (96%) had a mild infection<br />

/ 4 (2%) had a severe infection<br />

/ 6 (3%) had a critical infection<br />

Of those who were critical, one<br />

recovered and five died; those who<br />

died tended to be older (50+) and<br />

have other health conditions.<br />

It's too early to say from this data<br />

whether DMDs make a difference<br />

to COVID-19 recovery, but it does<br />

not suggest that the current DMD<br />

advice should be changed.<br />

Although this research is preliminary<br />

and the numbers are small, these<br />

results are reassuring for people<br />

with MS. They suggest that having<br />

MS doesn’t increase your likelihood<br />

of a more severe COVID-19 infection<br />

and that the majority of people with<br />

MS are likely to have a mild infection,<br />

the same as the general population.<br />

FROM THE NATIONAL MS SOCIETY<br />

Read more at: nationalmssociety.org<br />

Plasma neurofilament light levels<br />

are associated with the risk of<br />

disability in multiple sclerosis,<br />

Ali Manouchehrinia, PhD, et al;<br />

Karolinska Institutet; Neurology<br />

May 20, <strong>2020</strong>.<br />

Higher blood levels of a molecule<br />

called neurofilament light chain<br />

(NfL) were associated with<br />

progression of disability in blood<br />

samples from 4,385 people with MS.<br />

Although further study is needed<br />

before this blood test can be used<br />

routinely to predict disease course<br />

and guide the care of individuals<br />

with MS, these findings add<br />

to growing evidence that NfL<br />

has potential as a predictive<br />

biomarker of MS disease activity<br />

and disability progression.<br />

NfL is a fragment and part of the<br />

debris that enters the spinal fluid<br />

and blood when nerve wires (axons)<br />

are damaged. Studies of NfL in the<br />

bloodstream and spinal fluid have<br />

been underway to better define<br />

how this biomarker may be used<br />

to help detect and predict disease<br />

activity and response to treatments,<br />

not only in MS but in other disorders.<br />

In this large Swedish study, 4,385<br />

people with MS from Swedish MS<br />

registries, and 1,026 people who did<br />

not have MS, had NfL blood levels<br />

tested; and the participants were<br />

followed up for five years.<br />

People with MS had significantly<br />

higher levels of NfL in their blood,<br />

compared to people without MS.<br />

Higher NfL levels were significantly<br />

associated with worsening disability<br />

during the next year and with the<br />

likelihood of reaching moderate<br />

disability (affecting daily activities<br />

but not walking ability).<br />

This large study adds to a growing<br />

body of knowledge needed to<br />

determine the best use of NfL as a<br />

biomarker for MS care, treatment<br />

decisions and clinical trials.<br />

Additional studies underway will<br />

help standardise its use and help<br />

understand how age and other<br />

health conditions impact NfL levels.<br />

10


NURSING<br />

HAVE YOU<br />

HAD YOUR<br />

FLU SHOT?<br />

SUE SHAPLAND RN, BN, MSCN<br />

GENERAL MANAGER<br />

STRATEGIC SUPPORTS<br />

AND RESIDENTIAL OPTIONS<br />

Each winter brings the risk of flu and vaccinations are recommended for those at risk: the<br />

young, the elderly and those with existing illnesses. It has been more highly recommended<br />

by the Government this year due to the added risk of COVID-19.<br />

The vaccination is recommended<br />

annually as it wears off after three<br />

to four months; last year’s extended<br />

flu season saw some people<br />

vaccinated twice.<br />

Our Members often ask if they<br />

should have the vaccination or not.<br />

Our medical advisor Professor Bill<br />

Carroll AM offers the following<br />

comment:<br />

"There is no evidence that these<br />

vaccinations make MS worse or<br />

cause a relapse. Should a relapse<br />

occur, around the time of 'flu'<br />

vaccination it is thought to be<br />

coincidental. Occasionally people<br />

with MS having vaccinations can<br />

have a brief exacerbation of existing<br />

MS symptoms; but this is not<br />

worsening of MS. People with MS<br />

are advised to discuss this with their<br />

treating neurologist or physician as<br />

soon as possible as it is essential to<br />

have the vaccination earlier rather<br />

than later to reduce the risk of<br />

contracting the flu.”<br />

Don’t forget that your GP and / or<br />

neurologist can advise you on these<br />

and other important health matters.<br />

The Government funded Health<br />

Direct website: healthdirect.gov.au/<br />

colds-and-flu-treatments is packed<br />

with health information and advice,<br />

including flu updates and tips to<br />

help reduce the spread.<br />

While it can happen any time, it's<br />

more common to catch the flu, or<br />

experience flu-like symptoms, in<br />

the colder months of the year (April<br />

to October).<br />

6 ways to fight the flu; most<br />

of which apply to preventing<br />

the spread of COVID-19 and<br />

other infections:<br />

Get your annual flu vaccination<br />

to be protected. It reduces the<br />

chances of both catching and<br />

transmitting the flu. See your GP or<br />

local pharmacy for advice.<br />

Wash your hands for 20 seconds<br />

and frequently; good hand hygiene<br />

is the best way to prevent the<br />

spread of colds and flu and other<br />

infections. Use soap and water or<br />

hand sanitiser.<br />

Cover your coughs and sneezes;<br />

this prevents the spread of infected<br />

droplets to others and surfaces.<br />

Bin your tissues; throw tissues in<br />

the bin after use and then wash<br />

your hands.<br />

Avoid sharing cups, plates, cutlery<br />

or towels with others.<br />

Self-care at home; mostly you can<br />

treat the symptoms of a mild cold<br />

or flu yourself. Most people will get<br />

better within 7-10 days without any<br />

treatment.<br />

Get plenty of rest, drink plenty of<br />

water and non-alcoholic drinks,<br />

keep warm, eat a healthy diet and<br />

avoid exposure to cigarette smoke.<br />

Your pharmacist can assist with over<br />

the counter treatments if necessary.<br />

If you live alone, let someone know<br />

you aren’t feeling well so they can<br />

keep an eye on you.<br />

See your doctor if you are unwell and<br />

experiencing high temperatures,<br />

headache, breathing difficulties or<br />

a rash, or if you are worried at all.<br />

You can speak to a registered nurse<br />

for free advice 24/7 by calling Health<br />

Direct on 1800 022 222.<br />

11


CUSTOMER ENGAGEMENT TEAM<br />

WAIT TIMES REMAIN<br />

DESPITE FOCUS<br />

The introduction of the NDIS promised a modern way of<br />

providing disability funding to Australians. Its architects<br />

presented the scheme as an innovative and visionary<br />

solution to the predicament that was disability block-funding<br />

and a way of providing participants with control over their<br />

services. However, as Robert Burns once wrote, “The bestlaid<br />

schemes o' mice an' men.”<br />

While the NDIS got lots right and<br />

has quickly improved in many<br />

other areas – the NDIA’s responsive<br />

handling of the COVID-19 pandemic<br />

was impressive – one of the<br />

challenges with the scheme remains<br />

the long wait-time participants face<br />

to receive their first plan. Delays<br />

in decision-making and a lack of<br />

information are two of the most<br />

regular complaints about the NDIS,<br />

with many participants indicating<br />

they have had to wait many months<br />

for the NDIA to contact them or<br />

make a decision.<br />

The wait-time problem has been so<br />

bad that it became an election issue<br />

as the Government introduced an<br />

NDIS Participant Service Guarantee<br />

to support positive experiences<br />

with the NDIS. From 1 July <strong>2020</strong>,<br />

the Guarantee will aim for a new<br />

standard for the time it takes for<br />

the NDIS planning process. This<br />

means there will be shorter, agreed<br />

timeframes for people to receive<br />

a decision on eligibility, receive<br />

an NDIS plan and to have their<br />

plan reviewed. So good news for<br />

all, happy days and problem<br />

solved… right?<br />

Potentially yes, any focus on<br />

improving the speed and efficiency<br />

of the planning process should be<br />

applauded. However, it should also<br />

be noted that the ‘Tune Review’<br />

that proposed these changes<br />

did highlight that there may be<br />

some difficulties in achieving<br />

this new standard before July<br />

2021. So, perhaps more patience<br />

is required. Nevertheless, any<br />

focus on Customer wait-time is a<br />

positive outcome. In fact, <strong>MSWA</strong>’s<br />

NDIS team has already seen<br />

some Customers move from their<br />

eligibility assessment to planning<br />

in a matter of days, not the weeks/<br />

months that had become the norm.<br />

One word of warning would be to<br />

ensure that you are prepared for<br />

the planning meeting should it<br />

arrive sooner rather than later. We<br />

have seen some planning meetings<br />

be conducted over the phone with<br />

very little warning. If this happens<br />

to you please remember it's your<br />

planning meeting and the result<br />

will determine your services, so if<br />

you need more time, make sure you<br />

let the NDIA planner know.<br />

For our part, the <strong>MSWA</strong><br />

NDIS Team will continue to<br />

work with you to help you<br />

move through the planning<br />

process as quickly and easily<br />

as possible. However quick<br />

your planning process is,<br />

our Customer Relationship<br />

Coordinators will do their<br />

best to help and ensure you<br />

have all the information<br />

you need to achieve a<br />

positive outcome.<br />

GEOFF HUTCHINSON<br />

MANAGER CUSTOMER<br />

ENGAGEMENT<br />

12


COUNSELLING<br />

EATING<br />

MINDFULLY<br />

KELLIE HANSEN<br />

<strong>MSWA</strong> COUNSELLOR<br />

Would you like to enjoy your food more? Then eat mindfully!<br />

Mindful eating begins with eating<br />

slowly and without distraction.<br />

However, it goes much further<br />

than this. It engages all parts of<br />

your body, mind and heart. It<br />

brings curiosity and playfulness to<br />

food as you explore colours, tastes,<br />

scents and sounds. You develop a<br />

connection and response to food<br />

and inner cues to hunger and<br />

satisfaction. Mindful eating can<br />

replace self-criticism and shame<br />

with self-nurturing and respect<br />

for your own inner wisdom. With<br />

practice, mindful eating supports<br />

the freeing of habitual patterns of<br />

thinking, feeling and acting.<br />

Tips for eating mindfully:<br />

/ Be curious about your eating<br />

habits and without judgement.<br />

/ Begin eating mindfully for one<br />

meal per day or even one meal<br />

per week.<br />

/ Purchase produce mostly from<br />

the outside aisles of supermarkets,<br />

avoiding the centre aisles which<br />

are heavy with processed foods.<br />

/ Eat from a smaller plate to help<br />

with portion sizes.<br />

/ Check if you are eating due to an<br />

emotional hunger trigger such<br />

as stress, or a body hunger signal<br />

such as stomach growling.<br />

/ Turn off screens and reduce<br />

distractions. Focus on your meal,<br />

your own company, or those<br />

around you.<br />

/ Slow your eating down by<br />

putting down your fork between<br />

mouthfuls. Make a point of<br />

drinking slowly and pausing.<br />

/ Focus on gratitude and<br />

appreciation for the journey of<br />

what you are eating. Think about<br />

where your food has come from,<br />

how it grew and the people who<br />

helped prepare it.<br />

/ Try not to skip meals otherwise<br />

your priority will be to fill the void<br />

instead of enjoying your food.<br />

/ Chewing food thoroughly<br />

releases extra nutrients and<br />

flavours and is also kinder to our<br />

digestive system.<br />

/ Instead of finishing everything on<br />

your plate, pack leftovers.<br />

/ Eat sitting down, never on the go<br />

or standing up.<br />

Mindful eating is not a diet.<br />

It does not dictate or make<br />

you feel guilty about food<br />

choices. Instead it brings an<br />

awareness to the experience<br />

of food that is unique to you<br />

on a moment by moment<br />

basis that can support health<br />

and wellbeing and enhance<br />

the enjoyment of food by<br />

recognising our natural<br />

food cues.<br />

For additional support you can:<br />

/ Speak to your counsellor<br />

/ Download some apps such as Am<br />

I Hungry, Mindful Bite and Eat<br />

Chew Rest<br />

/ Search online ‘mindful eating<br />

Australia’ for support, information<br />

and services<br />

13


OCCUPATIONAL THERAPY<br />

PREVENTING FALLS AND TRIPS<br />

Falling can be a frightening experience. Many people with neurological conditions are<br />

susceptible to falls, which may occur for a number of reasons. An occupational therapist (OT)<br />

can work with you to identify some prevention strategies that may assist, including:<br />

DE-CLUTTERING<br />

It is important to keep walkways<br />

clear and be aware of rugs, power<br />

cords or other pieces of furniture<br />

which may cause tripping hazards.<br />

Keep commonly used items<br />

within reach, to avoid unnecessary<br />

bending or reaching.<br />

PERSONAL ALARMS<br />

Personal alarms can be worn<br />

to ensure that you can contact<br />

assistance should you experience<br />

a fall. There are many options<br />

available including who the alarm<br />

contacts and how your wear it.<br />

An OT can assist you in finding an<br />

alarm that best suits your needs.<br />

RAMPS AND RAILS<br />

Hazards such as steps, door frames<br />

or uneven surfaces can increase<br />

your risk of falls. An OT can assess<br />

your home environment to see if<br />

ramps or rails may be suitable and<br />

help you find the most appropriate<br />

option.<br />

KEEP PHYSICALLY<br />

AND MENTALLY ACTIVE<br />

It is important to keep moving to<br />

ensure your legs stay strong and<br />

conditioned. Additionally, mental<br />

wellness is important in helping you<br />

stay alert so that you can identify<br />

any potential hazards.<br />

Activities such as reading, using<br />

brain training apps and social<br />

activities can help keep you active<br />

and alert. Physiotherapists also play<br />

a key role in this area, and OTs will<br />

often work alongside your physio to<br />

assist with your physical health and<br />

mobility.<br />

MOBILITY EQUIPMENT<br />

If you are experiencing falls regularly,<br />

or feeling more unsteady on your<br />

feet, you may wish to consider<br />

wheeled-mobility aids such as a<br />

mobility scooter or a wheelchair.<br />

There are many factors to consider<br />

when investigating mobility<br />

devices. Your OT can work with you<br />

to ensure the most suitable device<br />

is selected.<br />

WHAT TO DO IF YOU<br />

EXPERIENCE A FALL<br />

Try to remain calm. If you have<br />

spoken to an OT before, take a<br />

moment to revise your action plan<br />

before rising. It is important to keep<br />

yourself and those around you safe<br />

if you do experience a fall. An OT can<br />

provide you with strategies to help<br />

you stand from the floor safely.<br />

If you would like to discuss these<br />

strategies further, please contact<br />

the OT department on 9365 4854,<br />

and we will work with you to identify<br />

the approaches that best suit<br />

your needs.<br />

REBECCA VAN NOORT<br />

<strong>MSWA</strong> OCCUPATIONAL<br />

THERAPIST<br />

14


SPEECH PATHOLOGY<br />

COMMUNICATING WITH THE USE<br />

OF TECHNOLOGY: WHAT’S NEW?<br />

Communication is a fundamental human right as declared by Article 19 of the Universal<br />

Declaration of Human Rights. At <strong>MSWA</strong> Speech Pathology, we whole-heartedly agree with<br />

this and strive to ensure that all Customers of <strong>MSWA</strong> Speech Pathology are provided with<br />

best practice advances in all areas of communication.<br />

For many of our Customers, as<br />

their condition progresses, they<br />

start to communicate with AAC<br />

(Augmentative and Alternative<br />

Communication). As technology<br />

has become more advanced,<br />

devices have become more<br />

sophisticated. We endeavour to<br />

ensure that we have the most<br />

up-to-date knowledge of these<br />

devices to support those who need<br />

this technology.<br />

We have been fortunate to have<br />

Customers receive funding for<br />

a NeuroNode device by Control<br />

Bionics. The NeuroNode is a<br />

wearable switch, which connects<br />

via Bluetooth to a computer<br />

communication system. The<br />

NeuroNode’s sensors sit on the<br />

surface of the skin, located on a<br />

muscle chosen to be the switch.<br />

When the client tenses the muscle,<br />

the NeuroNode detects the EMG<br />

signal (even if you cannot see the<br />

muscle move). The muscles do not<br />

need to be functional at optimal<br />

levels as the NeuroNode responds<br />

to extremely minimal signals.<br />

The device uses either scanning<br />

or eye gaze coupled with the<br />

NeuroNode to deliver access to<br />

communication which is easier to<br />

use and allegedly less fatiguing<br />

than others in the market. Other<br />

devices which have also proven<br />

effective for our customers are<br />

the iPad Pro with head tracking<br />

and switch control, and of course<br />

eye gaze systems, which are<br />

constantly being updated and<br />

made more accessible.<br />

In addition to using the device to<br />

communicate with those in your<br />

immediate environment, these<br />

devices can be used to send text<br />

messages, access Facebook, email,<br />

YouTube, navigate the web, and<br />

control your environment (eg turn on<br />

TV/lights etc).<br />

If you want to know more about these<br />

remarkable advances in technology,<br />

please contact Speech Pathology<br />

at <strong>MSWA</strong> on 9365 4888 or via email:<br />

CustomerService@mswa.org.au.<br />

PAMELA WINDRAM<br />

MANAGER SPEECH PATHOLOGY<br />

& DIETETICS<br />

15


COUNSELLING, SPEECH PATHOLOGY AND DIETETICS<br />

TELEHEALTH AT <strong>MSWA</strong><br />

To remain connected to our Customers during the peak of the COVID-19 pandemic, <strong>MSWA</strong><br />

introduced Telehealth. By utilising telephone and different online platforms we have been<br />

able to maintain most services and continued to provide support during the challenging<br />

period. Telehealth is a service we will continue to use.<br />

TELEHEALTH COUNSELLING<br />

ROB ORR – <strong>MSWA</strong> COUNSELLOR<br />

Telehealth counselling is any<br />

provision of counselling that does<br />

not occur ‘face to face’ with the<br />

counsellor and client sitting in<br />

the same room. It includes video<br />

conferencing solutions such as<br />

Skype, Zoom, Webex and FaceTime;<br />

phone calls and text; chat and<br />

email conversations. At <strong>MSWA</strong>, our<br />

Telehealth service delivery covers<br />

one-to-one counselling as well as<br />

couples, family and group sessions.<br />

There are several advantages of<br />

Telehealth counselling. The most<br />

obvious advantage currently is<br />

reducing the risk of contracting<br />

and spreading a contagious illness.<br />

COVID-19 has been the main driver,<br />

but the flu season is here so there is<br />

no better time to embrace this way<br />

of receiving services.<br />

Other advantages include accessibility,<br />

convenience, and anonymity. As<br />

Telehealth appointments typically do<br />

not require travel, they work well for<br />

clients in more remote areas, as well<br />

as Customers who have some physical<br />

limitations making travel more difficult<br />

or time consuming. They can often be<br />

scheduled at more convenient times<br />

for the same reason. Telehealth also<br />

benefits Customers who may have to<br />

overcome emotional as well as physical<br />

barriers to face-to-face counselling.<br />

Some Customers experience<br />

anxiety leaving home to attend<br />

an in-person appointment, and<br />

Telehealth also provides greater<br />

‘invisibility’ compared to an inperson<br />

counselling appointment.<br />

Customers who have speech<br />

difficulties but can type what they<br />

want to say can benefit from the<br />

alternatives of Telehealth which rely<br />

on this medium –- such as text, chat<br />

and email.<br />

Although some Customers may<br />

prefer personal contact, there is a<br />

growing body of research showing<br />

online counselling can have the<br />

same positive impact as face-toface<br />

counselling sessions.<br />

TELEHEALTH SPEECH<br />

PATHOLOGY AND DIETETICS<br />

PAMELA WINDRAM –<br />

MANAGER SPEECH PATHOLOGY<br />

AND DIETETICS<br />

During the COVID-19 period, the<br />

Speech Pathology and Dietetics<br />

department were able to continue<br />

to provide services to Customers<br />

via Telehealth, with no Customers<br />

being disadvantaged by the<br />

change in circumstances. Speech<br />

pathologists were able to provide<br />

support to Customers with<br />

dysphagia, voice therapy, language<br />

therapy and AAC (augmentative<br />

alternative<br />

communication)<br />

therapy. The dietitians were able to<br />

provide assessment and support to<br />

Customers with dietary concerns.<br />

The speech pathologists were well<br />

supported by Speech Pathology<br />

Australia during the period, with<br />

enormous amounts of support and<br />

updates on best practice advice on<br />

Telehealth services. We were able to<br />

complete a course in assessing and<br />

managing dysphagia via Telehealth<br />

which was invaluable. We have<br />

also completed an 8-week poetry/<br />

voice group to our Customers<br />

via telehealth.<br />

We will continue to offer therapy<br />

over Telehealth as required,<br />

especially to those in remote areas<br />

with the lessons learnt during the<br />

unusual times we experienced.<br />

If you are interested in accessing<br />

services via Telehealth, please<br />

speak to your <strong>MSWA</strong> allied health<br />

professional.<br />

16


<strong>MSWA</strong> MEMBER<br />

I MET<br />

A DOG<br />

I was heading down the<br />

street near my place in my<br />

electric wheelchair, when<br />

I saw an exceptionally<br />

large, shaggy Old English<br />

Sheepdog tied to the<br />

fence across the road from<br />

the newsagency.<br />

I’ve been a dog lover all my life and<br />

couldn’t resist stopping for a pat<br />

and a chat with him. I put out my<br />

hand first so he could sniff it and<br />

ascertain that I was friendly, then<br />

proceeded to pat him and scratch<br />

him behind the ears, which he<br />

seemed to like.<br />

Within a minute or two a gentleman<br />

came out of the newsagency<br />

and crossed the street to join<br />

us. He was the dog’s owner, and<br />

introduced himself as David, and<br />

the dog as Edward. It turns out<br />

the dog’s real name is Malizioso<br />

The Flying Dutchman as he is<br />

a pedigree show dog, and they<br />

always have interesting names, but<br />

he is colloquially called Edward.<br />

(Malizioso means mischievous<br />

in Italian. I can vouch for its<br />

appropriateness!) We spoke a few<br />

niceties, as you do when you first<br />

meet someone, then David asked,<br />

“So what is your ailment? Why are<br />

you using a wheelchair?"<br />

Immediately I was impressed with<br />

this gentleman. Over the years I have<br />

experienced all sorts of discomfort<br />

from other people when they see<br />

me in my wheelchair, ranging from<br />

not being able to look me in the eye,<br />

ignoring me completely, to chatting<br />

awkwardly but pretending the chair<br />

doesn’t exist. It was so refreshing<br />

to have someone come right out<br />

and ask me directly about my<br />

condition. I explained to him that I<br />

have multiple sclerosis, and over the<br />

years my legs have been affected<br />

and become weaker until I can no<br />

longer walk.<br />

David asked a few questions,<br />

then mentioned that he knew<br />

someone who lived in one of<br />

<strong>MSWA</strong>’s high-support residential<br />

facilities. Coincidentally I know<br />

this person quite well, which gave<br />

us another topic of conversation.<br />

While we were talking, I continued<br />

to pat Edward, then David untied<br />

his leash from the fence. Edward<br />

promptly attempted to climb onto<br />

my knee and lick my face! It was a<br />

bit like having a big hairy washing<br />

machine climbing onto one’s knee!<br />

It was clear I had made a friend. In<br />

fact, that day I made two friends,<br />

and David and I have continued<br />

to spend time together and enjoy<br />

each other’s company immensely. I<br />

am slowly being educated into the<br />

world of show dogs and learning<br />

just what a serious business it all is.<br />

I grew up on a farm and we had<br />

working dogs. Then I left home to<br />

study, and built a life of my own.<br />

I have nearly always had a dog<br />

as a pet, but they have always<br />

been mixed breed bitsers, with<br />

short hair and few maintenance<br />

requirements. I love dogs and have<br />

come to love Edward too, and even<br />

tolerate his obsession with licking<br />

my toes! I am grateful to Edward,<br />

because he is the catalyst that has<br />

brought a new friend and a new<br />

interest into my life.<br />

17


<strong>MSWA</strong> MEMBER<br />

REACHING ACCEPTANCE AND<br />

LOOKING TO THE FUTURE<br />

Diane King was on the long road to recovery from an horrific work accident, when a routine<br />

MRI returned a result that no one was expecting.<br />

Prior to the accident, Diane was<br />

fit and healthy. She went for ten<br />

kilometre walks in the South West,<br />

and was often up and down ladders<br />

as part of the cleaning business she<br />

still operates. In 2016, Diane was at<br />

a client’s home when she stepped<br />

into a dark room, unaware that<br />

she had opened the door onto a<br />

set of stairs with no landing. She<br />

tumbled down the stairs and into<br />

the basement.<br />

“My arm snapped on the way<br />

down and I was knocked out,”<br />

recalls Diane.<br />

Her colleague rushed her to<br />

hospital, where she underwent<br />

emergency surgery on her arm. Her<br />

lower back was significantly bruised<br />

and she had lumps on her head.<br />

Eight months later, she had begun<br />

to recover. A friend questioned why<br />

Diane had never been offered a<br />

scan to check her head for damage.<br />

So, Diane booked an MRI. When<br />

the results came back, Diane was<br />

sent to a neurologist to commence<br />

treatment for MS.<br />

“My world fell apart,” says Diane. “I<br />

was still dealing with the injuries<br />

from my accident and now this.<br />

“I was devastated. How? Why?<br />

When?”<br />

She was diagnosed in 2017 and Diane<br />

has good and bad days depending<br />

on factors such as weather, stress<br />

and physical challenges. She<br />

finds it difficult to walk more than<br />

50 metres and she suffers from<br />

muscle stiffness.<br />

She regularly attends the gym at<br />

the <strong>MSWA</strong> Vasse Service Centre,<br />

which was relocated to its new and<br />

superior site in 2019. Diane trains<br />

with a physiotherapy assistant –<br />

currently on a one-on-one basis<br />

due to COVID-19 precautions.<br />

Her main focus is keeping her<br />

body free from stiffness, for which<br />

she follows a reformer, bike and<br />

stretching routine.<br />

When she first reached out to<br />

<strong>MSWA</strong>, the Customer Engagement<br />

Team advised Diane how to apply<br />

for NDIS funding. Because of the<br />

permanent back damage from her<br />

accident, Diane had been seeing<br />

her own physio for some time. She<br />

is now being treated with funds<br />

provided through a self-managed<br />

NDIS plan.<br />

“My physio has been with me<br />

through the whole journey. I went<br />

to her for my injuries and now she<br />

treats my MS.”<br />

Diane has now been living with MS<br />

for over two years, and it has been a<br />

period of adjustment.<br />

“It’s about knowing your limits,”<br />

she says.<br />

For example, she will anticipate that<br />

a spell of hot weather will make her<br />

very fatigued, which is a common<br />

experience for most of those living<br />

with MS, and it can also worsen<br />

other symptoms.<br />

Diane is still running her cleaning<br />

business, saying it keeps her active<br />

but that it’s also quite taxing on<br />

her body.<br />

18


“I look after myself a lot<br />

better. I eat healthier.<br />

My hope is to live as<br />

independently as<br />

possible for as long as<br />

possible. I know there<br />

are services for more<br />

high dependency, but<br />

I’m not ready to think<br />

about it just yet.”<br />

Diane has done a lot of research into<br />

a possible link between physical and<br />

emotional trauma and the onset of<br />

MS symptoms. Scientific evidence<br />

on this connection is mixed. The<br />

results of one study did suggest a<br />

statistically significant association<br />

between head trauma as an adult<br />

and the risk for developing MS. 1<br />

However, cohort studies did not.<br />

MS is multifactorial, with a strong<br />

autoimmune component. Things<br />

like genetic susceptibility and<br />

environment also need to be taken<br />

into account.<br />

“Before my accident, there were<br />

absolutely no symptoms. After the<br />

accident, I was really, really messed<br />

up. Lumps all over my body. I do<br />

believe there is a connection.”<br />

Diane is grateful to be surrounded<br />

by a small but supportive group of<br />

people. She lives in Dunsborough<br />

with her teenage daughter and<br />

son, who this year celebrated his<br />

21st birthday in an unexpectedly<br />

low key way due to the COVID-19<br />

social restrictions, but they all<br />

enjoyed marking the milestone. Her<br />

eldest daughter lives in Perth and is<br />

expecting a baby very soon.<br />

“I used to go bodyboarding in<br />

the surf. I don’t do that anymore.<br />

But I can snorkel and I’ve always<br />

wanted to swim with the whale<br />

sharks. I go for beach walks and set<br />

goals to build up stamina. I think<br />

it’s important to give yourself a<br />

challenge every single day, to keep<br />

that level up.”<br />

Diane also loves photography and<br />

wants to do more of it in the future.<br />

“I used to be able to go down bush<br />

tracks and clamber up onto rocks<br />

and ledges to take photos, now I<br />

have to take the more stable tracks.”<br />

Above all, Diane is looking forward<br />

to being a grandmother. Due to<br />

COVID-19 precautions, she knows<br />

she might have to wait a while for<br />

that first cuddle, but these days she<br />

has reached a level of acceptance<br />

about life’s curve balls.<br />

“The thing with MS is<br />

you literally have no<br />

idea what your future is.<br />

We just have to go<br />

with the flow and see<br />

what happens.”<br />

1<br />

Lunny, C.A., S.N. Fraser, and J.A. Knopp-Sihota. “Physical trauma and risk of multiple sclerosis: A systematic<br />

review and meta-analysis of observational studies.” Journal of the Neurological Sciences 336 (2014) 13–23.<br />

19


BRAND, MARKETING & SALES<br />

WHAT’S ON<br />

HIP HOP YOGA<br />

Thursday 30 July (Online Event)<br />

Join us on Thursday, 30 July to<br />

celebrate International Day of<br />

Friendship with some Hip Hop<br />

Yoga run by WA’s queen of Hip Hop<br />

Yoga, Kaye Waterhouse. This online<br />

session aims to raise awareness<br />

and funds for people living with<br />

a neurological condition in<br />

Western Australia.<br />

Sign up to take part at<br />

mswayoga.org.au<br />

<strong>MSWA</strong> MEGA HOME LOTTERY<br />

August<br />

The <strong>MSWA</strong> Mega Home Lottery<br />

will be back in August. And this<br />

time, we’ve got a stunning Webb &<br />

Brown-Neaves home in gorgeous<br />

City Beach AND one million dollars in<br />

cash to giveaway. All that’s missing<br />

is you! Every ticket sold helps<br />

fund vital services and support for<br />

West Australians living with<br />

neurological conditions.<br />

Visit mswalottery.com.au<br />

MS READATHON<br />

August<br />

Embark on an epic adventure this<br />

August! The MS Readathon inspires<br />

kids to read as much as they can, all<br />

for an incredible cause. This year’s<br />

MS Readathon will be a magical<br />

quest, and the adventure kicks off<br />

on August 1 and wraps up on August<br />

31. Children can register with their<br />

school or individually.<br />

Best of all, kids joining our quest<br />

will not only nurture their love of<br />

reading, they will also be helping<br />

kids who have a parent with a<br />

neurological condition.<br />

Register online at<br />

msreadathon.org.au/<strong>MSWA</strong><br />

20


CENTRAL PARK PLUNGE<br />

Sunday 8 November<br />

The Central Park Plunge is a unique<br />

team building opportunity for you,<br />

your friends, family or colleagues.<br />

Or simply the chance to tackle a<br />

personal challenge and abseil 220<br />

metres down Perth’s tallest building,<br />

Central Park. All while making a<br />

real difference to the thousands of<br />

Western Australians living with all<br />

neurological conditions.<br />

If you’d like to join us on Sunday<br />

8 November, registrations are<br />

now open:<br />

registration.everydayhero.com/ps/<br />

event/CPP<strong>2020</strong><strong>MSWA</strong><br />

<strong>MSWA</strong> OCEAN RIDE<br />

Sunday 22 November<br />

Get ready for the <strong>MSWA</strong> Ocean<br />

Ride! This November, cheer on<br />

participants in the eleventh annual<br />

<strong>MSWA</strong> Ocean Ride, an iconic cycling<br />

event that takes riders along WA’s<br />

beautiful coastline from Fremantle<br />

to Hillarys.<br />

Speak to your physiotherapist about<br />

the annual Members Ride, in which<br />

<strong>MSWA</strong> Customers who are living<br />

with a neurological condition can<br />

get involved during their weekly<br />

physiotherapy classes.<br />

Of course, we’ll also be offering<br />

the Stationary Cycle Challenge.<br />

Last year our Butler, Rockingham,<br />

Mandurah, Wilson, Geraldton,<br />

Albany, Beechboro and Kelmscott<br />

Centres all took part. Speak to your<br />

local outreach coordinator to find<br />

out how to join the team.<br />

Find out more:<br />

mswaoceanride.org.au<br />

<strong>MSWA</strong> FEEDBACK<br />

We recently surveyed the market on its awareness of <strong>MSWA</strong>, asking<br />

various questions to a range of our Customers, fundraisers and the<br />

general public and how well they knew our brand. I am very pleased<br />

to report that the general population’s awareness of <strong>MSWA</strong> as a<br />

provider of services and support to those living with all neurological<br />

conditions in WA has risen from 72% when we last surveyed<br />

people in 2018, to 83%. It shows that the message is getting out<br />

there, enabling us to extend our support to more and more people.<br />

‘Metrix’, the independent organisation that performed the survey<br />

for us, reported “<strong>MSWA</strong> is performing strongly overall, surpassing<br />

healthcare benchmarks with high values of satisfaction.”<br />

MARCUS STAFFORD<br />

CEO<br />

We also have the wrap up of the Customer Satisfaction Survey in this<br />

edition of <strong>Bulletin</strong>. Please turn the page to see the results.<br />

Thank you to everyone who took the time to participate in these<br />

surveys for continuing to help us improve.<br />

21


BRAND, MARKETING & SALES<br />

<strong>MSWA</strong> CUSTOMER SATISFACTION<br />

<strong>MSWA</strong> invited Customers who received at least one service from us in 2019 to give us<br />

their feedback. We were delighted that 491 of you took the time to complete our survey.<br />

The results help us to understand how we are performing year on year, and identify areas<br />

for improvement, so thank you!<br />

OVERALL<br />

SATISFACTION<br />

WITH <strong>MSWA</strong><br />

Dissatisfied<br />

6%<br />

Very Dissatisfied<br />

2%<br />

NET Satisfied<br />

Satisfied<br />

37%<br />

Very<br />

Satisfied<br />

55%<br />

92%<br />

There is no difference in<br />

satisfaction between those<br />

who are on NDIS funding and<br />

those who are not.<br />

LIKELIHOOD TO<br />

RECOMMEND <strong>MSWA</strong><br />

(NET PROMOTER<br />

SCORE)<br />

<strong>MSWA</strong> Customers<br />

were asked on a scale<br />

of 0 to 10 whether they<br />

would recommend<br />

<strong>MSWA</strong> to someone else<br />

<strong>MSWA</strong> NPS<br />

+45<br />

<strong>MSWA</strong>’s NPS is above<br />

service provider<br />

benchmarks in WA<br />

80 % of <strong>MSWA</strong> Customers<br />

60<br />

40<br />

20<br />

0<br />

15<br />

Detractors<br />

(0-6)<br />

25<br />

Passives<br />

(7-8)<br />

60<br />

Promoters<br />

(9-10)<br />

Net Promoter Score = % Promoters – % Detractors<br />

SENTIMENT<br />

HOW CUSTOMERS FEEL<br />

TREATED BY <strong>MSWA</strong><br />

No Sometimes Yes<br />

Treated with dignity<br />

and respect<br />

Listened to<br />

Valued<br />

98%<br />

95%<br />

93%<br />

20 0 20<br />

40 60 80 100<br />

% of <strong>MSWA</strong> Customers<br />

22


SATISFACTION WITH QUALITY OF SERVICE BY SERVICE<br />

Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

NET<br />

Satisfied<br />

Counselling 99%<br />

Speech Pathology<br />

95%<br />

WHO RESPONDED<br />

SERVICES USED<br />

Online Phone TOTAL<br />

Service n= % n= % n= %<br />

Dietetics<br />

Physiotherapy<br />

Occupational Therapy<br />

94%<br />

94%<br />

93%<br />

Nursing 219 64% 92 61% 311 63%<br />

Physiotherapy 222 65% 80 53% 302 62%<br />

Occupational Therapy 176 52% 58 39% 234 48%<br />

Nursing<br />

Individual Options<br />

Social Welfare<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Customers using a service<br />

92%<br />

91%<br />

91%<br />

Individual Options 119 35% 55 37% 174 35%<br />

Social Welfare 131 38% 42 28% 173 35%<br />

Counselling 105 31% 20 13% 125 25%<br />

Speech Pathology 96 28% 27 18% 123 25%<br />

Outreach 43 13% 27 18% 70 14%<br />

Accommodation 26 8% n/a n/a 26 5%<br />

SATISFACTION WITH SKILLS OF STAFF BY SERVICE<br />

Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

Counselling<br />

NET<br />

Satisfied<br />

97%<br />

Respite 16 5% 8 5% 24 5%<br />

TOTAL 341 69% 150 31% 491 100%<br />

AGE<br />

GENDER<br />

Physiotherapy<br />

96%<br />

Speech Pathology<br />

96%<br />

18-34<br />

Female<br />

Nursing<br />

95%<br />

35-54<br />

Dietetics<br />

95%<br />

Occupational Therapy<br />

SATISFACTION WITH AVAILABILITY BY SERVICE<br />

Very Dissatisfied Dissatisfied<br />

Satisfied Very Satisfied<br />

Outreach<br />

(opening hours)<br />

Counselling<br />

Speech Pathology<br />

40 20 0 20 40 60 80 100<br />

Nursing<br />

Dietetics<br />

Social Welfare<br />

% of <strong>MSWA</strong> Customers using a service<br />

95%<br />

NET<br />

Satisfied<br />

97%<br />

96%<br />

92%<br />

90%<br />

89%<br />

89%<br />

55+<br />

Less than<br />

one year<br />

More than<br />

one year<br />

LOCATION<br />

Metro<br />

Regional<br />

0<br />

LENGTH OF TENURE<br />

0<br />

20<br />

20<br />

40 60 80<br />

% of <strong>MSWA</strong> Customers<br />

40 60 80 100<br />

% of <strong>MSWA</strong> Customers<br />

Male<br />

CONDITION<br />

MS<br />

ONC<br />

0<br />

0<br />

20<br />

20<br />

40 60 80<br />

% of <strong>MSWA</strong> Customers<br />

40 60 80 100<br />

% of <strong>MSWA</strong> Customers<br />

Physiotherapy<br />

Occupational Therapy<br />

89%<br />

88%<br />

0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Customers<br />

40 20 0 20 40 60 80 100<br />

% of <strong>MSWA</strong> Customers using a service<br />

23


BRAND, MARKETING & SALES<br />

<strong>MSWA</strong>’S READATHON HEROES<br />

The MS Readathon inspires kids to read as much as they can for the month of August, all<br />

for an incredible cause. We spoke to some of the children in our Customers’ lives about why<br />

they are taking part this year…<br />

WILLOW IS DOING READATHON<br />

FOR HER DAD, MATT, WHO LIVES<br />

WITH MS.<br />

How old are you, Willow? 8.<br />

What book are you reading at<br />

the moment?<br />

‘Harry Potter and the Order of the<br />

Phoenix’. It’s the biggest one!<br />

Who is your favourite Harry Potter<br />

character?<br />

I have two favourites – Hermione<br />

Granger and Luna Lovegood –<br />

because they both know a lot.<br />

Do you have any tips for the other<br />

kids taking part in Readathon?<br />

One way to understand words<br />

when you’re reading alone is to<br />

sound them out. It makes reading<br />

a whole lot more fun!<br />

RUBY IS DOING READATHON FOR<br />

HER GRANDAD, BOB, WHO LIVES<br />

WITH PARKINSON’S DISEASE.<br />

How old are you, Ruby? 11.<br />

What do you love about doing<br />

Readathon?<br />

I like to read lots of books and I<br />

love to think that my participation<br />

will help the people affected by<br />

neurological conditions.<br />

Why do you think raising funds for<br />

<strong>MSWA</strong> is important?<br />

I think it is important because it will<br />

help people like my grandad Bob to<br />

live the life that they choose.<br />

Do you have any tips for the other<br />

kids taking part in Readathon?<br />

You need to find the books that<br />

interest you the most and commit<br />

to reading them!<br />

What is your favourite book?<br />

Though I love to read books about<br />

World War II, my favourite book<br />

would be a book called ‘Ugly’ and it<br />

is about a boy with face deformities<br />

trying to fit in.<br />

SOPHIA, MARIO, CLAUDIA AND<br />

CHRISTIAN ARE DOING READATHON<br />

FOR THEIR DAD, MICHAEL, WHO<br />

LIVES WITH MS.<br />

How old are you?<br />

Sophia is 10, Mario is 8, Claudia is 6<br />

and Christian is 2.<br />

What do you enjoy about reading,<br />

Sophia?<br />

Reading allows me to get lost<br />

in another world. I love reading<br />

fantasy and my favourite books are<br />

Harry Potter.<br />

What are your favourite types of<br />

books, Mario?<br />

I like reading non fiction books. I<br />

like facts and information. I love<br />

learning about deadly animals and<br />

world records.<br />

Why do you love reading, Claudia?<br />

Because I get to snuggle with mum<br />

and dad.<br />

Funds raised from the MS Readathon will help fund vital support services in WA.<br />

In particular, the focus is on our special Family Camps and Fun Days. These camps provide an<br />

opportunity for kids who have a parent living with a neurological condition like multiple sclerosis<br />

or Parkinson’s disease, to spend quality time with their family, learn more about the condition their<br />

parents have and bond with other kids who are sharing their journey.<br />

The MS Readathon is such a wonderful way for kids to help other kids, all while falling in love with the<br />

wonder and magic of reading.<br />

TO SUPPORT OUR READERS, VISIT msreadathon.org.au/students AND SEARCH FOR WILLOW NICHOLS,<br />

RUBY HILLMAN AND SOPHIA, MARIO, CLAUDIA, AND CHRISTIAN RUGGIERO<br />

24


A BAZILLION<br />

A BAZILLION<br />

EPIC<br />

EPIC<br />

ADVENTURES<br />

ADVENTURES<br />

FOR ONE INCREDIBLE CAUSE<br />

AUGUST <strong>2020</strong><br />

WWW.MSREADATHON.ORG.AU<br />

(08) 6454 3164 | msreadathon@mswa.org.au


VOLUNTEERING<br />

VOLUNTEER UPDATE<br />

DAWN BURKE<br />

VOLUNTEER COORDINATOR<br />

Hello, all. So much has happened since we last chatted. This <strong>Bulletin</strong> is riding on the coattails<br />

of the COVID-19 pandemic, which has seen restrictions put in place; and many now being<br />

removed. It is amazing how so much can happen in such a short period of time. I am looking<br />

forward to getting back into the everyday running of our volunteering again, here at <strong>MSWA</strong>.<br />

I know my volunteers will be itching<br />

to get back into it too, or maybe<br />

you have enjoyed the break and<br />

the slowing down of the everyday<br />

pace. I know I have. Because I am<br />

lucky enough to have two roles at<br />

<strong>MSWA</strong>, I have worked from home<br />

for a couple of days and have been<br />

privileged to continue to support<br />

our Members and Clients in the<br />

community. It was great to keep<br />

doing what I love, even if it looked<br />

different than before.<br />

All going well, by the<br />

time this <strong>Bulletin</strong> hits<br />

the letterboxes, most of<br />

our groups will be back<br />

at the Outreach Centres<br />

and filled with your lovely<br />

smiling and bubbly faces.<br />

As you will read on the next page,<br />

Mary, our lovely Wilson kitchen<br />

volunteer who turned 90 last year,<br />

decided to hang up her apron for<br />

the last time before our kitchen<br />

closed in March. Mary will be sorely<br />

missed, and we greatly appreciate<br />

the service and dedication she<br />

has given to <strong>MSWA</strong> for the past<br />

fifteen years.<br />

It was National Volunteers Week 18<br />

May until 24 May, which we were<br />

unable to celebrate in style with<br />

a luncheon as we have done in<br />

previous years. The slogan this year<br />

was ‘Give a little, change a lot’, which<br />

I thought was very fitting. And just<br />

because we couldn’t celebrate it<br />

in person, doesn’t mean you were<br />

forgotten. I reached out to all of you<br />

during this time and thanked you<br />

for the marvellous job that you do for<br />

our Customers and staff at <strong>MSWA</strong>.<br />

We may not have been able to see<br />

you, but we certainly do appreciate<br />

you and thank you for your time<br />

and service to the organisation.<br />

Many a holiday and other plans went<br />

awry during this unusual time. I was<br />

meant to be attending a wedding<br />

in England via Ireland and Scotland,<br />

but alas, I couldn’t go. I just had a<br />

different holiday. I walked the ‘Cape<br />

to Cape’ for the second time with<br />

my brother. I called it the ‘Freakin’<br />

Awesome Cape to Cape Rainbow<br />

Tour’. We had rainbows every day,<br />

sometimes double rainbows. What<br />

a beautiful state we live in..<br />

I look forward to seeing you all<br />

soon. If you would like to discuss<br />

any volunteering opportunities or<br />

have a friend or two who may like to<br />

volunteer with us, please give them<br />

my details and we can have a chat.<br />

volunteer.coordinator@mswa.org.au<br />

or 9365 4843.<br />

I trust this <strong>Bulletin</strong> finds you all fit,<br />

healthy, well-rested, and ready and<br />

raring to go.<br />

Take care, keep smiling and bye<br />

for now.<br />

DAWN BURKE<br />

VOLUNTEER COORDINATOR<br />

26


MARY SAYS ‘CHEERIO!’<br />

Six months after celebrating her 90th birthday (pictured below), Mary Cross has announced<br />

her retirement, after fifteen years as a volunteer at the <strong>MSWA</strong> Wilson Outreach group.<br />

Mary said, “It feels like the<br />

right time.”<br />

Mary joined us in 2004. She had<br />

no personal connection to MS at<br />

the time, but was looking for a<br />

new volunteering opportunity. Her<br />

granddaughter mentioned that a<br />

friend’s mother was volunteering<br />

at <strong>MSWA</strong>. “They’re always needing<br />

volunteers,” she told Mary.<br />

After an initial interview, Mary<br />

started at the weekly Outreach<br />

group at our Wilson Service Centre.<br />

“I started in the common room,<br />

doing the coffee,” recalled Mary.<br />

“When a gentleman wanted to take<br />

that over, the coordinator suggested<br />

I talk to the Members, but I’m not a<br />

very good conversationalist!<br />

“Then they were short in the kitchen<br />

and asked me to help. ‘Ooh yes,’ I<br />

said, ‘that’d be great.’”<br />

At first, a young student ran the<br />

kitchen and Mary helped set up for<br />

making the sandwiches. He then<br />

left, and Mary was in charge. Every<br />

Thursday for fifteen years.<br />

“I would catch the bus from home<br />

into town, then get another bus to<br />

the Wilson Centre. I always had a<br />

good day. I would write in my diary<br />

every Thursday ‘I had a good day<br />

at <strong>MSWA</strong>.’<br />

<strong>MSWA</strong> Senior Volunteer Coordinator, Nicola Ryan, and Mary Cross at her<br />

90th Birthday Morning Tea. (October 2019).<br />

“<strong>MSWA</strong> does everything<br />

right. It was always so lovely<br />

to see the Members come<br />

in and have their lunch.<br />

Marcus Stafford would<br />

often come along and keep<br />

us informed of how well<br />

everything’s going.”<br />

The team at Wilson offered to give<br />

Mary a send-off, but she insisted,<br />

“I’m not a party person. I don’t want<br />

a fuss.”<br />

Mary is looking forward to having<br />

more free time in her 90s to<br />

do the things she enjoys. She<br />

goes on outings with her family<br />

and is a member of an over-55s<br />

walking group. She has twin greatgranddaughters<br />

in Sydney who she<br />

cherishes: “They keep me in touch<br />

with things.”<br />

The staff and volunteers we spoke<br />

to at <strong>MSWA</strong> Wilson say they will<br />

miss having Mary in the kitchen<br />

on Thursdays, working so hard<br />

and never seeking recognition.<br />

They spoke in admiration of her<br />

independent spirit, noting that<br />

she never missed a Thursday, even<br />

when the Outreach was off-site for 9<br />

months due to renovations. <strong>MSWA</strong>’s<br />

senior volunteer coordinator said,<br />

“Nothing ever seems too much<br />

trouble for Mary. She is one in a<br />

million!”<br />

If you would like to know<br />

more about becoming a<br />

regular volunteer for <strong>MSWA</strong>,<br />

please call 9365 4843 or email<br />

volunteer.coordinator@mswa.org.au<br />

to discuss the current opportunities<br />

available.<br />

27


ACCOMMODATION & OUTREACH<br />

HAMILTON HILL SUPPORTED<br />

ACCOMMODATION NEWS<br />

Our wonderful residents have always been proud of their lovely homes, and the surrounds,<br />

at Hamilton Hill; as are the great staff. Now we have another reason to show off about our<br />

facility; a beautiful re-vamped kitchen in the original site.<br />

We now have a larger, more<br />

functional, modern and high quality<br />

kitchen where residents’ meals, and<br />

our famous catering for special<br />

events, can be even better – if that’s<br />

possible!<br />

Thanks to the generosity of a<br />

group of donors at last year’s MS<br />

Dinner Auction, and the interior<br />

design skills of Andrea Taylor, this<br />

makeover has been better than we<br />

could have imagined.<br />

As they are now open, we have<br />

the enviable opportunity to hit the<br />

shops to get the right accessories to<br />

add the finishing touches!<br />

JAYNE O’SULLIVAN<br />

MANAGER HAMILTON HILL<br />

Refurbished kitchen at the <strong>MSWA</strong><br />

Hamilton Hill residential site.<br />

TREENDALE GARDENS NEWS<br />

Treendale Respite open again!<br />

Having been closed for respite for<br />

several weeks we are all glad to say<br />

“we’re open for respite again”, and<br />

we would love to take your booking!<br />

The COVID-19 precautions and the<br />

Government’s closing of intrastate<br />

borders with the creation of zones,<br />

resulted in us closing respite. Now<br />

many restrictions have been lifted<br />

we are pleased to say we are open<br />

for bookings for the respite house<br />

and the family unit.<br />

If you have never been to Treendale<br />

Gardens for respite, we are situated<br />

in lovely surrounds in Australind,<br />

close to a park and local shops,<br />

and 20 minutes out of Bunbury.<br />

Our friendly staff are experienced<br />

in providing support and care for<br />

people living with moderate and<br />

high care needs due to MS and<br />

other neurological conditions.<br />

The respite home has six bedrooms,<br />

three bathrooms, communal lounge<br />

and dining areas, and outside<br />

courtyards. The family unit is selfcontained<br />

with three bedrooms and<br />

two bathrooms, large communal<br />

areas and outside courtyards. The<br />

homes are fully accessible and we<br />

have care support staff onsite 24/7.<br />

For bookings and other enquiries<br />

please don’t hesitate to call<br />

our friendly staff – Linda, Paula<br />

or Jenny on 9725 9209 or email<br />

treendale@mswa.org.au.<br />

PAULA KENNEDY<br />

COORDINATOR SUPPORTED<br />

ACCOMMODATION TREENDALE<br />

28


WHAT ABOUT THE CAMPS?<br />

We have not forgotten the camps! We know what the camps mean to our Members,<br />

especially those who have had the opportunity to participate in them over the many years<br />

we have run them. Unfortunately, like many things, COVID-19 resulted in the planned camps<br />

being cancelled, but we can’t wait to get them started again when it’s safe and appropriate.<br />

They are a place to de-stress, laugh,<br />

and to enjoy the company of<br />

friends or to make new ones. A brief<br />

getaway can make a very positive<br />

difference, especially for the carers.<br />

Lotterywest has been very generous<br />

over the years, giving us a grant<br />

each year, and once again they<br />

have provided funding to support<br />

our camps program, supporting<br />

Members, carers and families.<br />

Camps will happen again but, as I<br />

write this, I cannot say exactly when.<br />

It may be possible for us to run<br />

single-day events that are fun and<br />

can bring people together. How<br />

long has it been since you had a<br />

day at the zoo, or watched a sunset<br />

while enjoying fish ‘n’ chips? If<br />

you would like to be informed<br />

of any single-day events, please<br />

contact Dawn Burke by emailing<br />

dawn.burke@mswa.org.au.<br />

I would also like to say a huge thank<br />

you and belated farewell to Sumit,<br />

who left <strong>MSWA</strong> in January to take<br />

up other opportunities. Sumit was<br />

with <strong>MSWA</strong> for nearly 10 years. He<br />

facilitated the camps for many<br />

years and made sure that everyone<br />

was safe, well fed and had fun on<br />

the camps. The good news is that<br />

Dawn, his offsider at camps, is still<br />

here and ready to welcome you<br />

back again.<br />

Much of the time staff spend<br />

on camps is voluntary and<br />

the support carried out by<br />

staff and volunteers attending<br />

the camps is what makes it<br />

possible to run them.<br />

SANDRA WALLACE<br />

MANAGER WORK, HEALTH,<br />

SAFETY AND SUPPORT SERVICES<br />

Sumit Sandhu enjoying a carers’<br />

camp on Rottnest Island, Feb 2016.<br />

WOULD YOU<br />

LIKE TO RECEIVE<br />

THE BULLETIN<br />

ONLINE?<br />

Register your email address today to start<br />

receiving our monthly Vitality e-newsletter<br />

or the <strong>Bulletin</strong> magazine online.<br />

Email damien.hill@mswa.org.au or call 9365 4814<br />

and let us know your current email address,<br />

or to update your contact details.<br />

29


INDIVIDUAL OPTIONS<br />

STAYING CONNECTED<br />

TO OUTREACH<br />

Our Outreach participants have always commented about<br />

how much they really enjoy their weekly outings to our <strong>MSWA</strong><br />

hubs. Part of the reason is the array of different activities,<br />

themed days and excursions. However, as we know, the last<br />

couple of months have meant that the Outreach doors had<br />

to temporarily close to ensure the safety of all our Customers<br />

during the pandemic.<br />

Christine Weston,<br />

<strong>MSWA</strong> Support Worker.<br />

This wasn’t just something that<br />

affected our Outreach participants,<br />

but also the wonderful staff who<br />

work within the groups. “It’s<br />

amazing how much you can miss<br />

that regular contact,” stated several<br />

of our Customers and staff. To<br />

address that, some of the Outreach<br />

staff started contacting our<br />

Outreach participants to see how<br />

they were doing.<br />

This proved to be very successful<br />

and welcomed by all. The Outreach<br />

staff from Albany, Beechboro,<br />

Rockingham and Wilson have<br />

now been calling our Outreach<br />

members on a weekly basis. The<br />

staff were able to have a chat<br />

with Customers about what they<br />

have been up to during this break<br />

and to share stories about life in<br />

temporary isolation. A number<br />

of our Customers said that they<br />

appreciated these calls as it made<br />

them know that they were valued<br />

and had not been forgotten.<br />

Jackie Dinsey,<br />

<strong>MSWA</strong> Support Worker.<br />

Overall, the feedback to staff was<br />

that the weekly calls were<br />

something that so many of our<br />

Customers looked forward to, and<br />

the staff reported having really<br />

enjoyed their one-to-one phone<br />

catch-ups. Staff commented that<br />

they learned a lot of new things<br />

about several of our Customers by<br />

having that valued time to sit and<br />

talk at length about a number of<br />

topics. This has been one of the<br />

biggest positives to come out of<br />

a situation that was outside of<br />

anyone’s control and had changed<br />

in a short period of time.<br />

Some comments that we received<br />

included:<br />

“Thrilled with the call, it’s my<br />

favourite part of the day”<br />

“I was feeling very down before you<br />

called, now I’m feeling so much<br />

better”<br />

“I really look forward to a Monday<br />

when I know you are going to call”<br />

“I miss seeing my friends at<br />

Outreach”<br />

The staff within the Outreach hubs<br />

echo these comments. We have<br />

really enjoyed having these catchups<br />

and we are very much looking<br />

forward to seeing everyone again<br />

when our Outreach centres open<br />

back up.<br />

And from what we are hearing, it<br />

is looking at being sooner rather<br />

than later that we are going to be<br />

able to open the doors to Outreach.<br />

Customers will come flowing back,<br />

and our buildings will be abuzz with<br />

happy chatter and laughter again.<br />

30


COVER STORY<br />

In March and April, we ran a series on social media called #AtHomeWith<strong>MSWA</strong>, in which we<br />

checked in with members of our <strong>MSWA</strong> community to see different versions and perspectives<br />

of self-isolation. Here is a small selection…<br />

WENDY WILSON<br />

“What am I most looking forward<br />

to? Cuddling the grandies again.”<br />

Wendy is in high support care at<br />

our Butler facility. The introduction<br />

of strict hygiene and social<br />

distancing measures proved initially<br />

challenging, but residents and staff<br />

quickly adjusted.<br />

“There is a ‘can do’ attitude at Butler,”<br />

says Wendy. “You couldn’t get more<br />

dedicated staff. Sometimes I joke<br />

with them, ‘Come on girls, go home.<br />

You’ve got to get a life!’<br />

“We’re lucky here, we can sit out in<br />

our own backyards. My plants are<br />

getting a lot of attention!”<br />

However, Wendy admits she<br />

is struggling with maintaining<br />

physical separation from friends<br />

and family.<br />

“It’s highlighted the things we take<br />

for granted – somebody popping in<br />

for a coffee, or even the more simple<br />

things, like hugs.”<br />

BRETT JOHNS<br />

Brett Johns has been living with<br />

MS for over 20 years. He is also<br />

a musician.<br />

“Music is my life. It’s my saviour. It’s<br />

such a wonderful healing force.<br />

I usually play my Ukulele at <strong>MSWA</strong><br />

Bunbury Outreach Centre where I<br />

go to meet, talk and share my music<br />

with others.<br />

I was starting to get a musical thing<br />

happening at ‘The Fridge’ – that’s<br />

what I call the outreach centre,<br />

because it’s where I go to chill!<br />

It’s currently closed, but that’s<br />

okay because I’ve been playing a lot<br />

at home.<br />

I’m still receiving in-home care by<br />

the <strong>MSWA</strong> crew and it’s good to<br />

be able to socialise with someone.<br />

To all you reading this, the staff at<br />

<strong>MSWA</strong>, thank you for continuing to<br />

do what you do.<br />

PS Excuse the hair – I need a shear,<br />

but I guess we’re all in the same boat.”<br />

<strong>MSWA</strong> HAMILTON HILL<br />

“As you can see social distancing<br />

is the new normal, as well as<br />

board games.”<br />

We caught up with Jayne, the lovely<br />

manager from <strong>MSWA</strong> Hamilton Hill,<br />

to see how our residents are doing<br />

self-isolating together.<br />

“We are all doing great here and<br />

have all kept our sense of humour.<br />

Hope you are keeping safe and well.”<br />

Read all the At Home<br />

With <strong>MSWA</strong> features here:<br />

mswa.org.au/at-home-with-mswa<br />

31


TAKE A BREAK<br />

IN THE SOUTH<br />

WEST.<br />

WHATEVER YOUR NEURO, WHATEVER YOUR NEEDS, WE ARE READY.<br />

Whether you or a loved one need a break from daily routine, we have a range of<br />

rooms with 24-hour care at <strong>MSWA</strong> Treendale Gardens Respite for a much-needed break.<br />

Call us on 1300 097 989 or visit mswa.org.au/residentialrespite to find out more.

Hooray! Your file is uploaded and ready to be published.

Saved successfully!

Ooh no, something went wrong!