Reflecting on consumer partnership this World Hemophilia Day

Saturday 17 April 2021 is World Hemophilia Day. As a member of the community this day recognises, Deon York, senior programme manager for the Health Quality & Safety Commission’s consumer engagement programme, reflects on what the day represents and how it can encourage us to improve health and wellbeing for all in Aotearoa New Zealand.

The Commission promotes and supports authentic partnerships between those who deliver care in our health and disability system and those who access it.

The theme of World Hemophilia Day this year is “Adapting to change: sustaining care in a new world”. With the COVID-19 pandemic having had a major impact on people with bleeding disorders around the world, adaptation has never been more important.

Connection and communication remain essential ingredients for providing safe and equitable services for this community. The community is made up of a diverse range of people – from patients and their families, to carers, physicians and researchers – each of whom has been affected by the pandemic in a different way. Although treatment and care is variable around the globe depending on health care system resources, in New Zealand it has been possible for care to continue to be delivered to a high standard. This is, in large part, because of how connected all members of the team are who provide care, be it haematologists, nurse specialists, physiotherapists, dentists, social workers, and most importantly, people living with an inherited bleeding disorder themselves. Maintaining this connection and communication is essential to the quality and safety of care and reinforces the positive impact true partnership can have.

The Commission continues to promote the consumer voice in the design and delivery of health and disability services at the governance, direct care and policy level. Although produced in mid-2017, this video shows how the board of the World Federation of Hemophilia models authentic partnership between consumers and clinicians.

It shows effective consumer representation at the governance level and how this works alongside clinical leadership.

Haemophilia, von Willebrand disease, inherited platelet disorders and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with haemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.

Find out more about World Hemophilia Day on the World Federation of Hemophilia website: https://www.wfh.org/en/events/world-hemophilia-day.