Annual Review 2019

The following text was presented by Rachel Vance at the Liver Kids AGM on 23 December 2019.

2019 has seen further consolidation of our aims for Liver Kids. We have continued our work in community awareness and focused on a range of activities that will benefit the growth and work of Liver Kids into the future.

Thanks to Our Members

Thank you to all of our members who have contributed to the Liver Kids community in 2019, whether through our Facebook presence, through our website, or by holding a fundraiser. Special thanks go to those members who have agreed to do media focusing on organ donation, or who have acted as a mentor for a family with a new diagnosis of liver disease. It is this aspect of our work we consider most important – creating a community of families to provide mutual support and advice.

The past 12 months has been a slower period for Liver Kids as the pressures of full-time work and family commitments took their toll on the hours available to put into the association. We were also significantly impacted by time consuming issues with our emails and website.

Activities in 2019

Even with these issues though, Liver Kids has had a successful year in many ways.

  • Our membership has increased to over 200 families nationally, giving us a real mandate to lobby in this space.
  • Rachel Vance has continued to provide personal support to newly diagnosed families and connect parents for ongoing peer support.
  • As a consumer representative on the NHMRC Committee reviewing the Ethical Guidelines for Organ Donation and Transplantation, Claire Leonard has ensured that specific issues around paediatric liver transplant are taken into consideration as part of the overall ethical considerations around organ transplant.
  • Janine Sawyer has represented Liver Kids, and paediatric transplant patients more broadly, on DonateLife’s Community Engagement Group.
  • Claire Leonard was elected to the Steering Committee of the Australian Patient Organisation Network, raising the profile of childhood liver disease amongst other health charities and key stakeholders.
  • We paid over $5,000 in Family Grants during the 2019 calendar year, assisting families who have been severely impacted financially by their child’s liver disease.
  • We considered a merger with the Liver Foundation. Ultimately, the two organisations were unable to establish clarity around some member engagement and advocacy issues that would allow for a merge and agreed instead to work collaboratively as relevant issues arise.
  • Our member families continued to participate in DonateLife media campaigns aimed at increasing organ donation rates nationally.
  • We maintained our great relationships with the Liver Units at the Children’s Hospitals in Westmead, Brisbane and Melbourne.

Fundraising

Our fundraising activity in the 2018-2019 financial year was slow but steady. Funds came from various individual donors as well as donations from student groups. Particular thanks to those people who have made regular monthly donations to Liver Kids including Commercial Wholesale Finance, Alison Barrouhi, Liam Barrett and Erika Hows.

Significant donations came from fundraisers held at Canberra Girls Grammar and the Frankston Footy Club (organised by Terry Saxon).

Further fundraising was done through member initiatives and we would like to particularly recognise Kell Thomas for ongoing commitment to fundraising for Liver Kids through her efforts with the Entertainment Book.

We encourage members to contact us with any fundraising ideas they have. This year most of the funds raised went to Family Grants – so you know that you are helping other Liver families manage through lengthy hospitalisations far from home

In the Next 12 Months

Liver Kids is a volunteer organisation, with the bulk of the work being done by Rachel and Claire around their full-time work commitments. Thanks to a rearrangement in some work obligations, next year will see a few more hours in the week to focus on the future of our association and working together for the benefit of all Australian children with liver disease.

We will be specifically focusing on building up the new website; including integrating the member database so families can join online, communicate more easily with us and keep their details updated. We will also be working to increase online education resources.

In 2020 we are aiming to increase member engagement and would encourage all members to consider how they would like to take part, that could be anything from organising a fundraiser to writing a blog, sharing social media or volunteering at our events. We look forward to connecting with as many of you as possible.

Rachel Vance
Chair
23 December 2019

Being Your Child’s Health Advocate

We recently had a 5-day hospital stay. It was the first one in 18 months and was at our local hospital, some 300kms from our liver specialists in Sydney.

The experience reminded me how important it is to be a strong advocate for your child, not only to ensure that they receive great care but also that they are comfortable and confident in the hospital setting. After all, hospital visits, bloods and invasive procedures are a fact of life for our Liver Kids.

It’s vitally important to remember that the medical and nursing teams are working for the best outcome for your child. However, different hospitals and teams might have ways of doing things that won’t be familiar to you and may make your child upset or uncomfortable. It’s absolutely OK to raise this with the hospital team and ask them to do things differently based on your experience of what works for you to keep your child calm and comfortable.

Key Points when Advocating for Your Child

Understand the Details of Your Child’s Condition and Medical History

The first medical and nursing team members you come across will probably not be familiar with your child and their history. You need to be able to provide a clear summary of their history including details of all medication. Keep a record in your phone so you can easily refer to it. If you are in a regional hospital rather than one of the Liver Centres, reinforce that you and your child are experienced in a hospital environment and expect to be involved in decision making about your child’s care.

Ask Questions

If you are not sure why a course of treatment has been suggested, ask the doctor looking after your child’s care for a full explanation and ensure you understand before you consent. Results of blood tests and procedures such as ultrasound and x-ray should be explained to you in the context of the treatment plan.

Involve Your Child

Even when they are a tiny baby, talk to your child about what is going on and involve them (at an appropriate level) in the discussions about their condition and treatment. As they grow up, they will need to take on responsibility for their ongoing care and should be confident that they have the right to ask questions and understand what is happening to them.

Know What Works for You

Different hospitals may have different ways of doing standard procedures. As an example, if your child is more comfortable staying in their bed for a cannula insertion but the standard is to go to a treatment room, you can request to have the procedure done at the bedside by explaining that your child will be happier and more compliant, with less disturbance. Similarly, you may know which veins are best and which locations will mean your child can still use their hands for drawing, reading, writing and gaming.

Being your child's health Advocate Lscape

Resources

There are plenty of resources online to help you build confidence to advocate in the healthcare and hospital setting. A good place to start is with Liver Kids friend, Dr Angela Mackenzie through her website http://www.everybodystaycalm.com/resources.html

The Result

Fortunately, by making sure we played an active part in her care team, despite daily blood tests and 3 cannula insertions, my daughter’s assessment of the worst aspect of her hospital stay was that it was ‘very boring being stuck in bed’. We thought that was a pretty good outcome!