MEMBER NEWS | MAY 2023

From the President

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

The next meetings will be held on the following dates, please keep an eye on our facebook page for further information.

Melbourne – Saturday 13/5/2023 @ 2pm – 4pm, held at Hawthorn Library Room 1 - Glenferrie. Click here to RSVP on facebook. Please note: An important discussion will be had on the day regarding patient reported outcome measurements to be added to the shunt registry. This will allow us to accurately report and measure on how patients feel post-operation.
Sydney – Sunday 28/5/2023 @1:45pm – 3:45pm, held at Ermington scout hall. Click here to RSVP on facebook.
Brisbane - Saturday 03/06/23 - More information to follow. Please keep updated through the Facebook Groups and our website for full details. Click here to RSVP on facebook.

The AGM was held in February and I congratulate the following people who were elected.

President - Andrew Garde
Vice President - Robyn Campey
Secretary - Vacant
Treasurer - Brian Millar
Newsletter Editor – Bree Henry
Social Media – Bree Henry
Committee Member – Ashlee Tenberge
Committee Member – Kerryn Cisk
Committee Member – Sean Cooney
Welfare Chair – Erin Millar
Welfare Officer VIC – Andrew Garde
Welfare Officer NSW – Jan Steinfurth
Welfare Officer QLD – Wayne Pene
Public Officer – Wendy Brown

The committee is planning for a planning day, work from this will be focused on adding detail and following on from our strategic plan & mission statement formulated last year. Priority areas that have been identified are Connection, Advocacy, Education & Promoting Research.

CONNECTION

Stories
- Hydro Warriors
Peer Support Program
- Meetings
- Welfare program
Conference

ADVOCACY

Emergency Dept process
Ryan’s rule equivalent in all states
- collaborate with Patient Advocacy Australia

EDUCATION

Website
Fact sheet development
Awareness activity
Rules of treatment
Patient Rights campaign
Contact info by hospital

PROMOTING RESEARCH

Continuation and expansion of shunt registry
Pressure monitor development
TBC – Surgical research role

If you have an idea that you would like to see in a priority area or can help deliver an outcome then please let me know president@hydrocephalus.org.au.

The HSA continues to work with the NSA on Patient Reported Outcome Measurements, the previous thoughts around using a generic outcome measure have changed and we will be putting together a small team to work on specific outcome measures with the NSA. If you would like to be involved let me know president@hydrocephalus.org.au.

Changes to meetings, this year apart from the face to face meetings we will also be trialling a virtual meeting for people who are not able to attend our face to face meetings or would like to connect more often. We are planning to run them once a month and further details will follow once a roster has been established.

We remain on the lookout for a new secretary, if you know of anyone who can fill this position please let me know president@hydrocephalus.org.au.

I would like to extend my best wishes for a speedy recovery to a few members who are recovering from hydrocephalus surgery.

Andrew Garde

President, HSA

SHUNT REGISTRY SHAPSHOT - APRIL 2023

THERE ARE NOW 5,076 RECORDS IN THE REGISTRY FOR 3,731 UNIQUE PATIENTS

SITE INFORMATION:

Sydney Adventist Hospital has now been fully approved and data submission can commence
Monash Children’s Hospital/Monash Medical Centre will resume data collection and submission

NUMBER OF ADMISSIONS:

2924 participants -1 admission
522 participants - 2 admissions
162 participants - 3 admissions
76 participants - 4 admissions
50 participants - >=5 admissions

AGE

GENDER

CLINICAL DIAGNOSIS - 4 MOST COMMON

SURGERY TYPE

OPT-OUT FORMS

After you/your child’s surgery you will receive a Participant Information letter and an opt out form (the one you receive may look a little different from the one below). If you want you/your child’s information to be recorded in the Registry you do not have to do anything. If you wish, you can remove some or all of your information. No reason needs to be given.

Please remember to check the tick box corresponding to the information you want removed. If a form is received with only you/your child’s information but no opt out fields requested, this is considered a full opt out and no information is recorded in the Registry.

Any questions or comments? Please contact me via email at shunt.registry.com.au

CLICK HERE TO VIEW THE OPT OUT FORM

Information provided by Katrina Smith, Shunt Registry Manager (shunt.registry@nsa.org.au)

HYDRO WARRIOR SHOUT OUT

MEET JENNIFER GHENT

"Two years ago I began to experience feeling like I had too many alcoholic drinks all the time. Driving and walking became challenging. I also had an unwavering brain fog and needed to urinate very often resulting in many accidents because the urge was so strong. Everything I did was impacted. My confidence and sense of independence declined. I was referred to a neurologist and neurosurgeon who could not reach a conclusion between them.

I am relatively young to present with this condition and I don’t have the ataxic gait which comprises Hakim’s triad of symptoms. I would not receive treatment rather had many blood tests, scans and persistent enquiries into my mental state searching for an alternate explanation. I was feeling low because as time progressed, my symptoms continued and my quality of life eroded.

The neurologist threw his hands in the air clearly frustrated with me. I decided I needed to consult with someone else. I had been told about a practitioner in Brisbane who had done a lot of work in this area. Thankfully I met with him. He was confident, decisive and reassured me not everyone presents with the same symptoms, everyone is different. This doctor has taken excellent care of me and I will be forever grateful to him."

-Jennifer Ghent

CLICK HERE TO SHARE YOUR STORY

FEBRUARY READS

Advocating for yourself in emergency situations

By Erin Garde

There’s nothing quite like the realisation that something might be up with your shunt to strike anxiety in the hearts of the people living with hydrocephalus in our community. My own hydro warrior husband describes it as a fog descending, blurring the edges of his senses, with a side serve of an excruciating headache that only happens when there’s something wrong with his shunt.

It’s at these times when you need help the most that it’s sometimes the hardest to advocate for yourself. Unfortunately and for various reasons, sometimes hospitals aren’t the best at responding to suspected shunt failure, even though it is a medical emergency that needs to be resolved as soon as possible.

Click here to read more...

Do you have a topic you'd like us to write about? Email news@hydrocephalus.org.au with your suggestions!

upcoming meetings - february 2023

The next meetings will be held on the following dates, please keep an eye on our facebook page for further information.

Melbourne – Saturday 13/5/2023 @ 2pm – 4pm, held at Hawthorn Library Room 1 - Glenferrie. Click here to RSVP on facebook.
Sydney – Sunday 28/5/2023 @1:45pm – 3:45pm, held at Ermington scout hall. Click here to RSVP on facebook.
Brisbane - Saturday 03/06/23 - More information to follow. Please keep updated through the Facebook Groups and our website for full details. Click here to RSVP on facebook.

Sydney August Meeting - Special Guest Vanessa from B. Braun

Our Vice President Robyn has organised for Vanessa to attend the August meeting in Sydney to talk to our members about the different elements of shunts. Vanessa is the Business Development Manager for Neurosurgery at B. Braun. Keep an eye out in the next newsletter and on our Facebook group for more information to come!

welfare CONtacts

SYDNEY

Jan Steinfurth

02 9586 1057

JSteinfurth@hydrocephalus.org.au

MELBOURNE

Andrew Garde

0438 172 141

president@hydrocephalus.org.au

BRISBANE

Wayne Pene

0423 412 912

wpene@hydrocephalus.org.au

support resources

Anti Discrimination Board

02 9318 5400

Brain Injury Association

Freecall 1800 802 840

Carers’ Task Force Australia

02 9532 0496

Northcott Spina Bifida Group (NSW)

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

Life Support Group (Campbelltown)

02 4633 4187

Royal Institute for Deaf & Blind Children

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

Health Care Complaints Commission

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

REQUEST A MEDIC ALERT CARD!

If you require a Medic Alert Card for Hydrocephalus, please send your information to Jan at jsteinfurth@hydrocephalus.org.au. Jan will need to know if you have a shunt or a 3rd Ventriculostomy. Medic Alert cards are available upon request to all HSA Members!

MEET OUR HSA Committee Members

Andrew Garde

President

0438 172 141

president@hydrocephalus.org.au

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.