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

The Power of a Community

The Liver Kids Family Fun Day in Sydney in late September was a fantastic and fun reminder of the benefits of being part of this community, connected by the unique experience that is childhood liver disease.

First defined by the ancient Greek philosopher Aristotle, a community is usually recognised as ‘a group sharing or having certain attitudes and interests in common’. This is particularly true in the case of health conditions, where there may be no connection between people other than the experience of the disease they share.

Where rare diseases are involved, there are many benefits that can come from being part of a community, a key one is a sense of belonging. Community members have a shared experience which may not be understood by family members and friends.

That sense of belonging often leads to meaningful mutual support. Having a community to rely on means you have access to people who know what you are going through. In the case of a new diagnosis of liver disease, other families have been there too and can give the benefit of their knowledge and experience for reassurance and point you in the direction of resources that can help answer your questions.

Access to resources is another key facet of the benefit of a community. No matter how smart you are or how much time you spend searching Google, it is impossible to know and do everything by yourself. Access to a community means that new ideas, resources and experiences can be shared and discussed, to the benefit of all members. In the healthcare setting, a strong community can also provide access to key subject experts. The families who came to the Liver Kids Family Day were lucky enough to hear an amazing and inspiring update from Dr Gordon Thomas on the incredible leaps forward in liver transplantation at The Children’s Hospital at Westmead. There was also the opportunity to talk one on one with him and other members of the Liver team.

Possibly the greatest successes a healthcare related community can have are in creating impact and influencing change. The voice of a group will have a larger influence than the voice of an individual. As a community we can work together to achieve real outcomes that will have a positive impact on the health of children with liver diseases and post liver transplant.

We are lucky that our families, and most of all, our Liver Kids, can meet each other, develop supportive friendships and build a strong community. This way we can learn together, support each other, contribute to improving diagnosis and create better resources for future Australian children born with a liver disease.

The Liver Kids community is very young in comparison to many others and there is much we can do. As part of this community, what would you like to work with us to achieve? What are the milestones we should be reaching together? And how should we celebrate our successes?

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.

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!

Childhood Liver Disease and Transplant in the Social Media Age

So first, a disclaimer: when my liver kid was diagnosed and had a transplant in 2007/2008 social media wasn’t really a thing. And I certainly didn’t have a smart phone in the hospital with me. This means that my experience was quite different to today. Of course we googled ‘biliary atresia’ after our first specialist visit, and saw all of the information about possible outcomes – liver transplant being the most likely. Looking back, I don’t think reading this information helped me. Really, it just added more stress to what was already a traumatic experience.

Today, there are hundreds of Facebook pages following children’s liver transplant journeys. Searching Biliary Atresia alone, brings up 145 pages and 76 groups, as well as fundraising websites telling harrowing stories of illness. This means that there is a lot of information out there for parents who are looking for it. For many, this is reassuring, you can see that other people have had similar experiences and might understand what you are going through. It’s really tough to go through liver disease with your child and it’s natural and helpful to seek information and support from others who have shared the experience.

But there is a definite downside to all of this information and there are 2 main reasons.

Liver Disease is Very Individual

Firstly, as your child’s clinical team will tell you, liver disease progresses at different rates and with different symptoms or side effects in each child. So if you are reading terrible stories from other parents you can get the impression that ALL of those things will happen to your child. You will worry about things that might never occur in your case, adding to the number of things you already have to worry about.

If you read anything that disturbs you, talk to your child’s team and ask all the questions you can. Trust their answers and remember that you can always ask for a second opinion if you are really concerned. Remember that your clinical team have seen hundreds of patients and have decades of experience.

Place Does Matter

The second problem with all of the information that is online is that much of it is irrelevant to the Australian experience. We have universal health care and people receive the same treatment regardless of income or status.

That is not the case in the USA, which is why so many stories out of the US are so bleak. Some children don’t get the medical care they need because of insurance or financial issues. The story of an American child waiting for a transplant is not a good indication of the experience you and your family can expect.

Check Facts for Peace of Mind

So, how do you know which sources are worth looking at online? Australian government websites are trustworthy, as are the websites of reputable Australian, US and UK children’s hospitals. When you are reading online articles, do some fact checking:

1. Can you find the information they present on other sites?
2. Is it written by someone with medical experience?
3. Is the health system they describe similar to Australia?

If you can answer yes to at least a couple of these questions, then the information is likely OK. But if you are reading information that is describing just one person’s experience, or is trying to raise money for an individual, be wary. It doesn’t mean it won’t be useful to you, but you risk being misled by information that won’t apply to your family’s experience.

Information about organ donation rates and the wait on the transplant list is particularly prone to mis-representation but easily checked. You can find up to date information on the DonateLife website.

Liver Kids have also added a Useful Information section to our website to help you find some facts.

(click HERE to download the infographic)

Sharing Your Story

Don’t feel as though you are obliged to share your own story on social media either. You will want to keep your family and close friends up to date with what is happening, but consider making that private.

Very important reasons for social media privacy in the case of transplant are to protect the identity of your child and the timing of transplant when it does happen. While you will want to thank your donor family, you may not be ready for them to contact you directly as a result of finding you through social media.

It can be hard to stay focused on the future when you are in the middle of a liver disease diagnosis and treatment, but the outcomes in Australia are excellent and in later life, your eye-rolling teenager won’t thank you for publicly sharing all of the details of their childhood illness.

Bottom line – this is your journey, don’t feel that you have to share it with anyone unless you want to. And try not to take on the burden of anyone else’s experience either. You are on a hard road, be kind and make it as easy as possible for yourself.

Need Support?

Liver Kids Australia has a network of experienced families who can provide support and advice if you have a new diagnosis or are waiting for a transplant. Contact Rachel on 0407 061 634 or at rachel@liverkids.org.au

Featured Photo Credit: http://www.hastac.org