FAQ’s
Who is the QENDO team?
Behind the QENDO Team is a group of people who have experienced their own struggles with health care systems, conditions and barriers in life. Their passion is funnelled into advocating for better outcomes for other people. Collectively, the team has been through so much and we hope to get to a time where we never see another person go through the same. We will get there with the community's help. We believe in the saying “If you want to go fast, go alone. If you want to go far, go together.”
The QENDO team is proud of the work that has been achieved over the last 33 years with our 34th Birthday in August. Despite the events of 2020, we were able to launch the App which supports over 10, 000 people, our community sessions continued, and our support for regional and rural people remained strong. When we heard of the barriers to healthcare people were facing, we stepped up our activities and offered education and connection sessions online.
Our workforce is volunteer-led and we rely on passionate individuals who kindly give their time to keep the organisation running.
How does QENDO operate?
QENDO is supported by a passionate and dedicated voluntary board, operations team, team leads, mentors, support workers and volunteers who manage and deliver our programs and services.
We have been advocating for this community since 1988 and only in the last few years have we seen our decades of hard work really push the endometriosis agenda forward such as the National Action Plan for Endometriosis!
In 2019, QENDO received funding from the Queensland Government to develop and maintain the QENDO App. A part of this project funding was to support a part time (1 day/week) person, who is currently Jessica, who is contracted to manage and ensure the project meets all criteria as set out in our agreement, until the end of the agreement. This means, the individual's contract is discontinued if our funding is discontinued. The set wage was in line with the role requirements and endorsed by the board. This was intentional to protect the organisation and reduce the risk of using other allocated funds from donations or fundraising to pay this wage. QENDO also contracted paid work to people in our community to assist with the development of content, marketing and communications to support the App. We’re lucky to know talented people in this community, so it was special to engage with them to help bring this project to life!
Jessica is also President of QENDO in the capacity as a volunteer.
Over the years, QENDO has received funding and grants to deliver specific projects. As part of this grant funding, often a short-term contract is offered to assist in the delivery of the project. This can also contribute to the total wages paid for the financial year. Some grants do not offer payment to support a project manager as part of their criteria. In these cases, the individual volunteers to deliver the project.
In some circumstances, if a volunteer is travelling to represent QENDO and the community, coverage or reimbursement for travel is offered.
The history of QENDO and the move to be more inclusive
When QENDO was established in 1988, our services were exclusive to supporting women. We were also only in Queensland and supported endometriosis. Since then we have grown to support all people affected by endometriosis, adenomyosis, PCOS and infertility in Australia and New Zealand. Over the years, we’ve received feedback from individuals with suggestions to improve our services and how we can be more inclusive. We take all suggestions on board and work to implement them wherever possible.
How have we helped to be inclusive:
We heard the communities’ concerns and changed our support line from 1800 FOR WOMEN to 1800 ASK QENDO.
We promote the use of pronouns when introducing ourselves.
We aim to use inclusive language wherever possible.
We’re working on developing new material and resources to reflect inclusive language and imagery.
We ask people with a range of backgrounds to share their story and experiences - again it is up to the individual if they choose to share their story.
We changed our EndoSister program to the QENDO Mentor program to use inclusive language based on feedback from this community.
Our recent self-love shoot in 2021 aimed at championing all types of people.
We welcome anyone to join our team or contribute to sessions or projects to share their expertise and experience.
RANZCOG
The Royal Australian College of Obstetricians and Gynaecologists (RANZCOG) is responsible for the training, development and setting of the guidelines for clinical care. The guidelines are not developed or managed by QENDO. If you have any questions or concerns about the guidelines, direct them to RANZCOG as they have the ability to change them. QENDO will continue to advocate for updated guidelines although the final decision is with RANZCOG.
Training of Doctors
RANZCOG and the Australasian Gynaecological Endoscopy and Surgery (AGES) Society are responsible for the training of specialist doctors in gynaecology. RANZCOG oversees the broader education of specialists in obstetrics and gynaecology and AGES runs the training program for specialisation in surgery. The funding for this training is provided by the Federal Department of Health or RANZCOG.
The training of specialist doctors in endometriosis takes at least six years and is impacted by a number of factors including trainee positions in the RANZCOG program and within public hospitals. If additional funding is allocated to training positions it will take many years to see the benefit of this funding and must be carefully considered to not create a service gap in another area.
QENDO is not involved or aligned with AGES or RANZCOG. QENDO is a peer-run organisation and we do not offer clinical services. We do offer peer education to health services to share education with clinical teams. Further, we have also partnered with health services and education organisations to deliver training material to health professionals. However, training and upskilling of gynaecologists or surgeons is not within our scope. QENDO has and will continue to advocate for appropriately trained doctors and lobby for funding from the Federal Department of Health.
Government Funding Announcement - March 2022
The recent announcement is a welcome investment into an underfunded condition like endometriosis. It is not enough to address the needs, but it is a start. Like many other organisations, QENDO submitted funding requests to address the actions of the National Action Plan for Endometriosis within our scope. QENDO will not receive the full $58million and we are yet to hear if any funding will be allocated to QENDO. This funding is decided by the Department of Health and it is up to them to allocate the funding.
QENDO did not request or advocate for all the programs that the government has announced, in fact, we believe other priority areas in endometriosis are of higher priority than some of the proposed funding allocation and initiatives. We are however pleased the Federal Government is supporting endometriosis and providing funding to make some impact. We still have a long way to go. Despite significant lobbying and discussions, the final decision is with the Federal Government.
Our relationships with health professionals
QENDO has built many relationships with clinicians, researchers and health services over many years. While we may work together on initiatives such as the National Action Plan or education material, our focus is on supporting the individual. We do not favour any health professional and suggest people seek second or third opinions if they are unhappy or engage with their GP to discuss other referral options.
Like many organisations, we have over time received donations from health professionals. These contributions and financial support do not influence decisions or activities.
Our resources are sent to hundreds of health professionals across Australia and New Zealand. They are not paid to offer the resources nor are they encouraged or required to refer their patients to us. The resources are a tool to assist the patient. If the health professional chooses to offer a resource to the patient, this is the decision of the health professional.
At times, health professionals contact QENDO with the consent of the patient and refer them to our services. Consent is always requested and confirmed before QENDO makes contact with the individual. The role of QENDO is to support the individual.
Referral List
QENDO offered a peer managed and supported referral list for several years. QENDO created a referral list to address the numerous and continual posts in our support groups about specialists and healthcare professionals and people’s experiences with them. The referral list was a peer-driven idea created for the QENDO community. We apologise if the user took the referral list for another service other than outlined. We asked the community for their recommendations and compiled a list of these professionals.
In March 2022, we changed from the lists into a service map and it was available online for several weeks to test the platform. It has since been removed. We are in the process of reviewing this service under our Strategic Plan.
There was no requirement for clinicians to make a financial contribution to QENDO to be featured on the list.
Does QENDO pay a CEO?
QENDO does not have a CEO. QENDO is run by volunteers. We have never had any permanent employees.
We receive funding from the Queensland Government to maintain the QENDO App. The wage is directly funded by the Queensland Government grant for the QENDO App in line with the contract. This is reported in our ACNC report (and audited annually).
At times, we may engage people in short term contracts to deliver awareness or marketing initiatives. We also may engage in a consulting arrangement in which the representative may receive remuneration for their time (for example, consumer research representatives). We also engage with a counsellor who provides counselling services, this cost is fully covered by the appointment cost.
QENDO Support Services
QENDO provides peer-run volunteer support services. This service is run by rostered volunteers who are available at varied hours during the week, response times depend on call volume and volunteer capacity. The support line message states this and in times of crisis you should contact Lifeline on 13 11 14 or present to your GP or local hospital.
We have received feedback about our use of 24/7 in regards to our support line and this is on our current agenda to discuss.
Bullying and harassment
We have zero-tolerance for bullying. We work to support one another in the best way we can. We encourage people to speak up about any concerns by sharing them with their team lead or the Board. If the individual is not comfortable with talking to them we offer a dedicated well-being volunteer they can speak to in confidence. They are kept confidential unless the individual allows consent to share or if the matter is of risk. Anyone who joins QENDO is made aware of our policies, including how to raise a concern as part of their onboarding process.
If we are made aware of inappropriate behaviour, bullying or harassment, we consider the complaint and address it via one-on-one meetings and at times engage with a Human Resource or Mediation expert to find appropriate ways to assist the individual(s) involved. If a volunteer is found to be participating in bullying, their role is temporarily suspended until further notice. If the individual were to re-engage with the organisation, they would be required to repeat training and guidance.
Volunteers leave the organisation for a range of reasons and at times this has been because of a disagreement, mismatch of values or other reasons. Where concerns are raised, we invite the volunteer to meet and discuss the matter and attempt to resolve the issue. In some cases, the volunteer may choose to resign from the organisation. We have asked people to step away from the organisation because their involvement no longer aligned with the organisation’s values.
Our values are:
Integrity, accountability, diligence, perseverance, honesty and support.
Our vision, mission and goals are all under review as part of the strategic planning process, so you might see this change in the months to come.
How we manage information
It is important to us that our members of the community feel safe and supported - we as volunteers were looking for this when we first interacted with QENDO, and it is a legacy that will always remain at our core. This is why we prioritise the confidentiality of callers. We don’t share your stories or experiences unless you ask us to.
The support line is a confidential and safe space. Our priority is to address and support the individual, workshop their concerns, and encourage them to seek other opinions if required.
All volunteers are required to sign a volunteer agreement which states their involvement in private and confidential information. They are required to keep the information confidential whilst they are volunteering and after they have moved on from QENDO. Breaches of confidentiality will result in disciplinary or legal action.
When QENDO engages with someone to deliver services, the contractor signs a confidentiality and privacy agreement.
Prioritising advocacy
Our services and goals are based on what we see needed in the community and what they tell us they need. We rely on our team who are representatives in their communities and their feedback. Feedback through our services and events also informs our decisions. We are always listening to what the community needs and pride ourselves on being proactive wherever we can. We also share surveys to learn about what the community needs.
There is so much more to do in this space and without advocating for this community, those goals won’t be reached. We cannot do this alone and need people in the community to work with us to use our collective voice to make change - and we have proven how effective this is with the national action plan for endometriosis.
Governance and structure
QENDO is managed by a small group of Committee Members and Directors while our wider team supports and leads specific teams. The Management Committee (President, Secretary and Treasurer) and Board of Directors are responsible for the governance and structure of the organisation including reports, compliance, annual audits, policies and procedures.
How we manage donations and funds
It is very important to QENDO that funds raised or donated in a specific region, stay in that region. We work with the local team to understand the needs of the community and support them accordingly. Sometimes people prefer to donate money without categorising it. But they always have an option.
For example, in 2020 our Mackay team recognised a need to fund a local endo nurse. A fundraiser event was held to raise money for this service. QENDO is now working with the local health service toward this goal.
Another example is a recent event in Toowoomba. We were able to use the funds donated in the Toowoomba community by providing local schools with educational tools, flyers and information.
Donations for research are donated to Grant Montgomery and his team at the institute for molecular bioscience. Grant's work is like no other and lacks serious funding. We have supported his work for decades.
Donations and monies raised do not currently fund wages.
In 2018, the wider QENDO volunteer team decided to diversify revenue to support the organisation. Peachykeen was launched alongside a range of products designed to support people living with the conditions we support. While we only make small profits from this range, it helps us develop or improve new ranges or styles based on feedback from our customers. We also use the funds to purchase or expand the resources we offer.
Every year our financial information is audited. We share this information at our AGM and it is available for download through our member’s hub. It is the role of the Treasurer to track all expenses and income. How we manage our funds and donations is also supported by our nominated accountants. It is their responsibility to review the funds and audit to check if they are managed appropriately. To date, we have not received any failed audits.
We also receive in-kind donations from professionals, health practitioners and companies. This enables us to hold events, education sessions, workshops and offer giveaways or donations to others. They have also written content for us, contributed to videos and information. Their contributions and financial support have not guided any decisions we made or influenced activities.
Our donations go towards:
Research projects at UQ, IMB
Education Resources
Printing and material
Support line (number connection and phone line rent)
Insurances
Storage
Promotional/awareness-raising material or campaigns (i.e Story Bridge banners)
Audits
Digital platforms and programs to manage the operations and service deliveries
Technology and devices to support roles
QENDOMeet resources
Operational expenses i.e. stationary, internet, travel etc.
Saving funds for larger projects which were unsuccessful in funding or grant funds but regardless, still was needed by the community.
Some people choose to donate privately and this is entirely their choice. For other individuals or businesses who choose to donate publicly, we promote them as our “partners & supporters”.
Volunteer well-being
We work with over 50 volunteers across Australia and New Zealand. Almost all of our volunteers live with or are affected by a chronic condition or illness. Due to the number of volunteers, our organisation is managed by streams. It is the stream's responsibility to manage and report any concerns with any members of their team. We also rely on people to share their concerns and be honest about their capacity with us. We regularly check their capacity and ask where we can help or support them.
We build relationships with members of the team. We’re often supporting one another through their difficult times too!
Volunteering can help people feel more socially connected to others and this in turn drives positive changes in wellbeing. We aim to help the volunteer connect with like-minded people or situations where others might be going through the same journey. They gain a sense of purpose and acceptance into a community. We also offer individual education to learn about conditions, offer support, training and opportunities where possible to assist the volunteer in any way we can. Volunteering can also act as a buffer against stress or loss for some people, such as those who are unable to work.
QENDO ambassadors and representation
We work with ambassadors who have big beautiful hearts, who willingingly offer their time and platform to advocate and raise awareness for endometriosis and the other conditions we champion. We welcome all people, colours, sexuality or appearance and over the years have asked several under-represented groups to join our ambassador group. The choice to be an ambassador is entirely up to the individual.
The community is always welcome to suggest ambassadors. We are often networking to find more people to join our team and we welcome anyone that can help make a difference and align with our core values.
First Nations people
We are lucky to have First Nations people as part of our team who can guide us and assist with education and awareness across different cultures. We acknowledge that engaging with First Nations people is a journey, and with open hearts and listening ears, we strive to do better.
This FAQ will be updated over time.
Last updated: 18th April 2022