AUTUMN | MAY 2022

In this edition

From the President

Welcome to the Autumn edition of the HSA newsletter, Connections.

Over the last few months there has been generally an improvement in the covid pandemic and hence most of the HSA May meetings will be face to face. They are listed below and are also posted to our Facebook page and website. Meeting dates for May are:

Melbourne | Saturday 14^th May | 2pm to 4pm | Hawthorn Library Meeting Room 2, 584 Glenferrie Road Hawthorn Vic 3122
Sydney | Sunday 29^th May | 1:30pm to 3:30pm | 1^st Ermington Scout Hall Kissing Point Rd & Bartlett St, Ermington NSW 2115

When attending the face to face meetings please respect the health of others by following covid safety measures such as distancing, wearing a mask and using hand sanitiser.

The website subcommittee continues to work on the detailed prototyping of the new website. This will be followed by work on the content. The new look and feel of the website, although not quite ready for demonstration, should improve the experience and give it a fresh new look.

With the covid pandemic beginning to subside, and a lengthy few years since the association looked at its strategy and future plans, the committee will be meeting on 21 May in Sydney to set a strategy for how the association meets its objectives. This could lead to new benefits that we can provide, or new programs.

If you have ideas on what the HSA could be focusing on, we would love to hear about them. There's a form just below for you to submit your ideas.

You may have recently noticed a surge in posts to our Facebook page and that the association is now also on Instagram. These posts are part of a lead up to a fundraising campaign that will culminate in September. Please keep an eye out for the fundraising campaign as we get closer to September and like and share the posts also. If you have any questions about hydrocephalus you would like answered via social media, email president@hydrocephalus.org.au .

Recently the federal budget was released and in very good news, the Australasian Shunt Registry is specifically mentioned in the budget papers and is funded for the next financial year. The amount is embargoed for now. This funding is not recurrent, and as the election is in full swing it’s an excellent time to talk to your member of parliament about it.

At the last AGM, we moved several constitutional amendments that were all passed. Most of the changes were to permit electronic notification and participation in General and Committee meetings, to make it easier for members to participate in association meetings, regardless of where they live. The amended constitution is in the process of being provided to the various regulatory bodies and then we will work to implement it at our meetings.

We also elected the 2022 committee members at the AGM. I am pleased to announce that these positions have been filled:

President – Andrew Garde

Vice President – Robyn Campey

Treasurer – Brian Millar

Secretary – Wendy Brown

Social Media & Communications – Ashlee Tenberge

Welfare Subcommittee Chair – Erin Millar

General Committee Member – Sean Cooney

Scroll down to the end of the newsletter to meet your committee!

I look forward to seeing and speaking to many of you face to face in the next few weeks.

Andrew Garde

President, HSA

FROM THE Shunt registry

Written by Katrina Smith, Shunt Registry Manager
Shunt.registry@nsa.org.au

Funding Update

Fantastic news for the Shunt Registry that we were one of seven clinical quality registries to receive 12 months funding in the recent budget. This will assist in the ongoing operations of the Registry which continues to grow at a rapid pace.

Record Update

The Registry received the most records to date during 2021. There are now 4176 records in the Registry for 3122 unique patients. Full opt out remains stable at between 7-8% (currently 7.5%) and partial opt out is just under 2%.

Annual Report

The annual report will be published on the NSA website in the second week of May. This report contains an overview of the data entered into the Registry between January 2017 and December 2021.

AUTUMN FEATURE ARTICLE

Community health and wellness in the 21st century - THE AUSTRALIAN FEDERAL ELECTION

The Federal Election will be held on 21 May 2022. Consumers Health Forum (CHF) is urging the next Australian Government to implement a range of reforms to strengthen the health care system in Australia.

Consumers Health Forum has worked with their members and stakeholders to develop an election platform that sets out the commitments sought from the major political parties.

The focus of their election platform is:

“What can be changed so that each patient, carer and community has the health services and care that they need to live the best and longest life that they can?”

The context for this election is like none previously experienced by most living Australians. It comes at a time when an already straining health system, in need of fundamental reform and restructure, is grappling with a deadly pandemic that disproportionately affects the community’s most vulnerable people.

We encourage you to read the election platform - the policies that health consumers think matter most, and download the information pack and kit to help you make this election matter in the future of health.

The 2022 - 23 Election Platform is accompanied by a detailed document outlining the case for an Australian Health Consumer Leadership Academy.

The consultations with health consumers were guided by a Steering Group of volunteers whose focus was to prioritise and document four or five national policies. These are being advocated to government, opposition, minor parties and independents during the election campaign.

SHARE YOUR STORY

We’re planning our next big fundraiser and we need your help!

If you’re happy to share your hydrocephalus journey, please submit your details for a shout out on our channels and to help raise awareness.

Submit your story here

MEMBER STORY

Written by Caroline Jollow, mum to Ash.

Our family and friends are running for a cause that is close to our hearts on Sunday 15th May through the beautiful streets of Sydney City in the early hours of the morning. We are hoping to raise awareness and funds for the Hydrocephalus Support Association.

Our 17 year old son, Ash was diagnosed with hydrocephalus in 2020 at age 15 after having a varying degree of symptoms over a year. It was a devastating diagnosis at that time, which was followed by a very difficult journey through failed ETV surgery, postoperative infection and a lengthy hospital stay in ICU. It was a very traumatic time for Ash and the whole family. It was hard to hold it together as a mum and stay strong, hopeful, patient and kind with all the doctors and nurses when they were doing the best they could. It was during COVID which made the hospital an even scarier place as we could not see anyone smile. Human kindness and a smiling face during a time like that can make such a difference. COVID stole that vital part of care while being in hospital.

Ash is currently doing well and now has a VP shunt. The daily life with hydrocephalus and having a shunt has remaining challenges. Ash is a courageous and brave young man who has taught us all so much. School is difficult due to short term memory issues, cognitive processing and articulation. He chips away, does the best he can and continues to get through Year 12 in a different way to how he imagined. He has two wonderful older brothers that have been a great support to him too!

As a family we have grown through the challenges that hydrocephalus has thrown us. I do believe that dark places do eventually bring us growth when we are finally lucky enough to climb out of them.

We all now take a day at a time, make the most of all opportunities and remember to laugh multiple times a day. Most importantly, we continue to surround Ash and all those around us with love, hope and faith.

WINTER ISSUE TEASER

hydrocephalus Awareness Campaign

The Hydrocephalus Support Association launched an online awareness campaign in February 2022. You may have noticed an increase in Facebook posts, and a new presence on Instagram!

For the next issue of Connections at the end of Winter, we will be showcasing more about the awareness campaign, as well as highlighting some fundraising and awareness events that are being run by some of our members and broader hydro community.

MEMBER Meeting Dates

Our member meetings are starting to become hybrid, with the HSA looking at options for returning to face-to-face meetings. This month's meetings are face-to-face.

You can also join the virtual meetings via our Facebook page.

Melbourne | Saturday 14^th May
2pm to 4pm | Hawthorn Library Meeting Room 2, 584 Glenferrie Road Hawthorn Vic 3122
Sydney | Sunday 29^th May
1:30pm to 3:30pm | 1^st Ermington Scout Hall Kissing Point Rd & Bartlett St, Ermington NSW 2115

welfare CONtacts

support resources

SYDNEY

Janice Steinfurth

02 9586 1057

WOLLONGONG

Mary Elphick

0425 222 126

MELBOURNE

Andrew Garde

0438 172 141

BRISBANE

Erin Millar

0434 103 814

emillar@hydrocephalus.org.au

Anti Discrimination Board

02 9318 5400

Brain Injury Association

Freecall 1800 802 840

Carers’ Task Force Australia

02 9532 0496

Health Care Complaints Commission

02 9219 7444 | Toll Free 1800 043 159
http://www.hccc.nsw.gov.au

Life Support Group (Campbelltown)

02 4633 4187

Royal Institute for Deaf & Blind Children

02 9871 1233
http://www.ridbc.org.au

SBH Queensland (Spina Bifida & Hydrocephalus)

07 3844 4600 | 1300 655 447
http://www.spinabifida.org

Northcott Spina Bifida Group (NSW)

02 9890 0100
www.northcott.com.au/services/spina-bifida-services

HSA Committee Members

The Hydrocephalus Support Association is run by a committee, who are elected into their positions each year at the Annual General Meeting.

Everyone who works in the Hydrocephalus Support Association is a volunteer. Most of the committee members work full or part time in paid employment, and they fit in their commitments to the HSA in addition to work and family life.