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

The committee held a planning weekend on the 17-18th of July, and it was a very busy time with sessions running from 10am to 5pm and 8:45am to 2pm. The planning weekend deepened the overarching planning done last year and focused on initiatives for each of our strategic pillars which are Connection, Advocacy, Education and Promoting research which also incorporated feedback given in the survey of members that was run just before the planning weekend. It was also great to meet some committee members for the first-time face to face. Everybody felt energised by the weekend and the outcome is a prioritised plan starting this year.

The Kitea Sensor update: I have been contacted by Simon Malpas with an update about the sensor, its development is progressing after it being spun out of The University of Auckland and into a start-up called Kitea Health and I have been offered the opportunity to beta test the entire system and app (outside of the body), this will be a paid role that will run for a month and also provide a conduit for our feedback about the phone app they have developed. He also advised me that as part of the safety trials, animal testing has commenced and there is a flock of sheep in New Zealand that have had the sensor implanted and they are learning a bit about CSF pressure in sheep.

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.

As part of our planning session mentioned above one of the initiatives discussed was more support meetings. We will be trialling monthly online support meetings, we acknowledge that there are different needs from people who get or live with hydrocephalus at different times in our lives so we will be running Normal Pressure Hydrocephalus online meetings as well as a general meeting that will have break out rooms for specific needs depending on attendance at the meeting. We are also hoping to have more specific support meetings however that is dependent on volunteers, if you can help please let me know via email president@hydrocephalus.org.au.

I hope all our members and supporters are doing well this winter as there are lots of respiratory viruses being transmitted, I wanted to remind you all that as we have a chronic condition it is possible to get a flu shot for free through your GP.

Andrew Garde

President, HSA

SHUNT REGISTRY UPDATE

FUNDING

The Registry is elated to receive ongoing Federal Government funding for the next four years. This will enable us to extend the work of the Registry to include projects including data linkage and the development of a Patient Reported Outcomes module. We are very thankful to the HSA and it’s members for their support over many years allowing the establishment of the registry and enabling us to demonstrate that it is a sustainable, long term project.

ANNUAL REPORT

The third Annual Shunt registry report has been published and is available here. This report analyses data from 5026 admissions for 3071 unique patients. Report findings include

(i) the most common age group undergoing shunt surgery are adults
(ii) haemorrhage is the most common clinical aetiology in infants and tumours the most common in children. Idiopathic normal pressure hydrocephalus (INPH) now represents 25% of all adult admissions.
(iii) 18% of shunts are revised within 2100 days (5.7 years), however most primary admissions occur within 400 days.

SHUNT REGISTRY SHAPSHOT - AUGUST 2023

THERE ARE NOW 5,389 RECORDS IN THE REGISTRY FOR 3,955 UNIQUE PATIENTS

Data period for this report December 2016 – 21 July 2023

NUMBER OF ADMISSIONS:

3097 participants -1 admission
548 participants - 2 admissions
176 participants - 3 admissions
76 participants - 4 admissions
58 participants - >=5 admissions

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 HENRY

"During routine baby checkups at 8 weeks old, Henry’s GP had noticed that his head circumference had rapid growth since his previous checkup. From a short time after birth, Henry’s eyes seemed to look a little alarmed, which progressed into sunsetting eyes.

He was closely monitored by our GP for head growth over the next few weeks and then sent for an ultrasound of his fontanelle which showed extra fluid in his brain. He was sent to our local hospital for an MRI the following day, which revealed he had an arachnoid cyst that looked to be partially blocking the flow of his CSF.

The doctor explained that Henry had hydrocephalus and that he would be sent to Brisbane Queensland Children’s Hospital the following morning to consult with neurosurgeons."

-by Henry's Mum, Kerryn

Click here to read Henry's full story

CLICK HERE TO SHARE YOUR STORY

THE LATEST ARTICLES

Advocating for yourself in emergency situations - PART 2

By Erin Garde

Do you remember the five strategies we outlined in the May 2023 newsletter that you can use to advocate for yourself in shunt related emergency situations? Strategy #3 was to know and to use the escalation process if you’re concerned or not satisfied with the care you are receiving at the hospital you are in. Every hospital in Australia should have a documented process you can use when this happens to escalate matters, but sometimes it’s challenging to find out what the process is and how to use it.

In this newsletter we are pleased to launch a brand new resource for our HSA members: the National Hospital Escalation Process Resource. This resource outlines the escalation process employed by hospitals within your State or Territory that contribute data to the Australasian Shunt Registry.

It’s a BIG job- there are 56 hospitals Australia wide that contribute data to the Shunt Registry- and we had to start somewhere, so for this newsletter we’re launching the resource with hospitals in Victoria. Also, you may notice that the hospital you receive treatment in is not in this resource yet. With such a big task that needs to be done properly, we focussed on those hospitals who contribute data to the Shunt Registry because we know they manage hydrocephalus there.

Don’t worry, work on the escalation process for hospitals in New South Wales that contribute data to the Shunt Registry is underway, and we’ll release it as soon as it’s done. Queensland, South Australia, Western Australia, Tasmania and ACT will follow soon after, and we’ll release the resource for each State and Territory as soon as it is done. Promise!

If you would like us to include a hospital in Victoria that is not currently in the resource, please email the details to Erin Garde (egarde@hydrocephalus.org.au) and we’ll get onto it ASAP!

In the meantime, here’s the link to the brand new National Hospital Escalation Process Resource:

CLICK HERE TO DOWNLOAD THE RESOURCE (VICTORIAN HOSPITALS)

Please let us know if you have any questions!

NEW MEDIA POLICY

This media policy provides a set of guidelines for all HSA committee members and expert spokespersons to adhere to when interacting with the media.

CLICK TO DOWNLOAD POLICY

NEW Privacy Policy

This privacy policy will give you a more comprehensive explanation of how your data is handled by the Hydrocephalus Support Association (HSA).

CLICK TO DOWNLOAD POLICY

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

upcoming meetings - august 2023

We're excited to extend an invitation to all Hydrocephalus Support Association (HSA) members for our upcoming Member Meetings.

These in-person gatherings are a cornerstone of our community, fostering connections and facilitating shared experiences. Attendees will also gain insight into HSA initiatives, understand our impact on the Hydrocephalus community in Australia, and learn ways they can contribute to our mission.

No matter where you are in your Hydrocephalus journey—whether newly diagnosed, a long-term patient, or a support person—we warmly welcome you to join us at our next meeting.

To ensure everyone can participate, we'll also offer a Zoom option for those unable to attend in person.

Melbourne (& ZOOM)

Saturday 13 August, 2pm – 4pm

Camberwell Library Room 1

View Facebook Event: Click here

View ZOOM link: Click here

PEER SUPPORT MEETING (ZOOM)

Wednesday 16 August, 8pm – 9pm

View Facebook Event: Click here

View ZOOM link: Click here

NPH PEER SUPPORT MEETING (ZOOM)

Wednesday 23 August, 7:30pm – 8:30pm

View Facebook Event: Click here

View ZOOM link: Click here

SYDNEY (+ZOOM)

Sunday 27 August, 1:45pm – 3:45pm

Ermington Scout Hall

View Facebook Event: Click here

View ZOOM link: Click here

PLUS Special Guest Speaker & Shunt Demonstration from Braun Representative

In addition to our usual agenda, we are excited to announce that we will have a special guest speaker - Braun representative, Vanessa. Vanessa will bring a variety of Braun Shunts along and she will take us through a detailed demonstration of them. This is a fantastic opportunity to gain an in-depth understanding of an essential aspect of living with Hydrocephalus.

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 NSW

02 9268 5544

complaintsadb@justice.nsw.gov.au

https://antidiscrimination.nsw.gov.au/

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

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.

Robyn Campey

Vice-President

CLICK TO EMAIL

Brian Millar

Treasurer

CLICK TO EMAIL

Erin Millar

Welfare Chair

CLICK TO EMAIL

Andrew Garde

Welfare Officer VIC

CLICK TO EMAIL

Kerryn Csik

Committee Member

CLICK TO EMAIL

Wendy Brown

Public Officer

CLICK TO EMAIL

Bree Henry

Social & Newsletters

CLICK TO EMAIL

Jan Steinfurth

Welfare Officer NSW

CLICK TO EMAIL

Wayne Pene

Welfare Officer QLD

CLICK TO EMAIL

VOLUNTEERS WANTED

We are on the look out for some great volunteers here at the HSA! If you feel you would suit any of the roles listed, please reach out to our President, Andrew Garde at president@hydrocephalus.org.au for more information.

Secretary

Supporting the committee and members, this role is suited to a strong administrator who understands and enjoys the details involved in the association’s meeting process.

CLICK TO VIEW THE FULL POSITION DESCRIPTION

To apply, please register your interest with the HSA President, Andrew Garde by email at president@hydrocephalus.org.au.

General Committee Member

Collaborate with the Hydrocephalus Support Association Committee on various projects including but not limited to: fundraising, awareness initiatives, welfare initiatives and more.

To apply, please register your interest with the HSA President, Andrew Garde by email at president@hydrocephalus.org.au.

Welfare Officers

Our Welfare Officers are available to support those with Hydrocephalus and their families. This wide-ranging role helps to educate and empower and will assist the HSA in hosting Monthly Online Peer Support Meetings, as well as other Welfare initiatives.

To apply, please register your interest with the HSA President, Andrew Garde by email at president@hydrocephalus.org.au.