AAPEC – Our Plan
Our 2024 plan sets out the areas the AAPEC Committee will focus on in order to better achieve our goals. On 12th September 2023, a new Committee was appointed by our membership to lead the organisation over the coming 12 months. Meet our team here.
We have each come to our role as Committee members because of our commitment to supporting women who are diagnosed with or at risk of preeclampsia and other hypertensive disorders of pregnancy (HDP). Our members have either had preeclampsia, been a partner, a sister or mother of someone diagnosed with preeclampsia or have provided health care to women with preeclampsia. A common experience amongst AAPEC members has been the lack of appropriate support at the time of diagnosis, a sense of bewilderment at the diagnosis and the need for timely and ongoing support and information.
- We want to make sure that across Australia there is a readily available community of support for anyone with preeclampsia as well as for their partners, family, and friends
- We want to make sure information and support can be easily accessed at all stages of pregnancy and in the years following diagnosis
- We want to make sure no woman or her family is left alone struggling to understand their diagnosis and their long-term health risks
- We want to continue to support research and improved clinical care of women diagnosed with preeclampsia and other hypertensive disorders
- We invite all AAPEC Members to contact the Committee with ideas and skills
Why action on Preeclampsia matters
Globally, every 6 minutes a woman dies because of preeclampsia. Preeclampsia is a common serious complication of pregnancy. In Australia 1 in 20 women are diagnosed with preeclampsia and 1 in 100 women will experience severe symptoms such as HELLP Syndrome or eclampsia. HELLP syndrome is the medical name given to a group of serious symptoms involving the liver and blood. HELLP stands for H (haemolysis – red blood cell damage); EL (elevated liver enzymes – indicating liver damage); and LP (low platelets in the blood leading to a bleeding tendency). Occasionally, preeclampsia can lead to seizures, a serious complication known as eclampsia. Preeclampsia can affect both the mother and her unborn baby. It usually arises during the second half of pregnancy and can occur some days or weeks after the birth. In the mother, it can cause several problems of which she may be unaware – such as high blood pressure (hypertension), leakage of protein into the urine (proteinuria), thinning of the blood (coagulopathy), liver dysfunction and problems with her nervous system such as headaches or visual problems.
When a pregnancy is complicated by preeclampsia, there may be problems with the blood flow to the placenta. The baby may grow more slowly than normal in the womb, experience a potentially harmful oxygen deficiency and may be born earlier than expected.
1. Our foundations remain relevant today
Australian Action on Preeclampsia Inc. (AAPEC), an association incorporated in Victoria on 24 June 1994, is a voluntary organisation set up to provide support and information to women and families who have experienced preeclampsia.
Membership is open to anyone with an interest in preeclampsia.
AAPEC has charitable fundraising status in Victoria and New South Wales, and we aim to extend this to all states and territories in Australia.
Our objectives are:
- To educate, inform and advise the public and health professionals about the prevalence, nature and risks of preeclampsia and eclampsia
- To provide support to women and their families who experience preeclampsia
- To campaign for greater awareness and action to improve methods of detection and treatment
- To promote and support research in all fields of preeclampsia prediction, diagnosis, management, and care
What we do:
- Provide linkages and networks for women either recently diagnosed with preeclampsia or experiencing the longer-term impacts of preeclampsia
- Provide a forum for women to share their experiences of preeclampsia
- Publish health information brochures on preeclampsia
- Organise seminars and workshops for both the public and health professionals
- Partner with a range of professional and consumer organisations to advance research and public awareness of preeclampsia
- Support research on preeclampsia either as members of research consortiums, assisting in contributing a consumer perspective, or promoting relevant research projects on AAPEC social media platforms
- Maintain the AAPEC social media platforms
- Raise funds to support AAPEC’s objectives
2. Our unique strengths
- Our members include those with a lived experience of a diagnosis of preeclampsia and members with medical and midwifery expertise
- We maintain our philanthropic status attracting a tax-deductible benefit to any donor
- We enjoy strong ties to the Melbourne-based Royal Women’s Hospital and St George Hospital in Sydney. We are working on developing relationships with other maternity units around Australia
- We have skills and experience in disseminating information through a variety of mediums
- We are part of an international group of ‘sister organisations’ providing access to extensive networks and knowledge. These include UK Action on Preeclampsia, American Preeclampsia Foundation and NZ Action on Pre-eclampsia.
- We are supported by internationally recognised leaders in the research of preeclampsia
- We have a good social media framework using the mediums of our Website, Facebook, X and Instagram Accounts
3. Six opportunities for renewal and growth
Opportunity 1: Unmet Demand for Information
The prevalence of preeclampsia in Australia means there is a continued need for information for women and their families. The experience of our members points to a need to improve the presence, timeliness, and ‘reach’ of information on preeclampsia to women planning a family, in the early weeks of pregnancy, at diagnosis and beyond diagnosis.
Our ongoing goals:
- Broaden our networks to assist in improved information dissemination and raising of awareness
- Form new partnerships with existing organisations and groups relevant to our sector and target audience
- Create educational events e.g. Webinars and Podcasts
Opportunity 2: Improving our social media infrastructure
Ongoing improvement of our information products will give rise to the need to further adapt and improve the tools we currently use to disseminate information. Technical assistance to improve the on-line search algorithm will assist in improving access to women searching for online information. Our use of a wide range of social media platforms is currently active to reach a wider target audience, including Facebook, Instagram, X and YouTube.
Opportunity 3: Improved tailoring and targeting of information and support
The information requirements of women who experience preeclampsia change with life events. There is opportunity for the information AAPEC produces to be tailored to women and their families at all phases of their lives. Our members have identified five phases which have shaped the type of information and support they have needed.
| Life events that shape the scope of information required | Information gatekeepers and scope of information
|
| Pre pregnancy / Early pregnancy
|
Information gatekeepers
Midwives, GPs, Obstetric Medicine Physicians Scope of Information: Pre-pregnancy health, prevention, prediction, symptoms, being prepared |
| Diagnosis
|
Information gatekeepers
Obstetricians, Obstetric Medicine Physicians, midwives, GPs, ED doctors and nurses Scope of Information: How is the diagnosis made? Why did this happen? What happens next? Risks to me and my baby? How will I give Birth? Time in hospital? Support to my family? |
| Birth and the first twelve months after diagnosis
|
Information gatekeepers
Midwives, Obstetricians, Obstetric medicine Physicians, GPs, Maternal Child Health Nurses, allied health care workers, parenting groups/services Scope of Information The experience of mothers, partners, family and friends, grief and loss. Isolation due to the birth experience, physical and emotional recovery, monitoring long term health risks |
| Planning a subsequent pregnancy
|
Information gatekeepers
GPs, midwives, Obstetric Medicine Physicians, Maternal Child Health Nurses Scope of information Pre-pregnancy health check, discussion of risk, precautions, minimising risks, prevention |
| Long term health | Information gatekeepers
Neonatologists, paediatricians, GPs, Obstetricians, Obstetric Medicine Physicians, Cardiologists, midwives, allied health clinicians Scope of information The long-term health risks for mother and child, reducing risks, monitoring health risks |
Opportunity 4: A National footprint for AAPEC
Our Committee Members are currently from NSW, Victoria, Queensland and Western Australia. We look forward to welcoming new Committee Members from other States and Territories.
We have membership throughout Australia and to a network of research centres, health and medical teaching facilities and programs, all of which provide a platform for disseminating information and raising awareness on preeclampsia.
Our ongoing goals:
- Raise our profile in all States and Territories by forming partnerships in all jurisdictions with for example: training colleges and universities, hospitals and maternal health providers
- Conduct ‘national online’ webinars and educational sessions each year
Opportunity 5: Counselling and support services
There is currently no phone-based helpline on preeclampsia in Australia.
Our ongoing goals:
- Continue to use our existing method of communication using Contact Us on our website or Messenger on Facebook
- Appoint appropriate Committee Members to personally reply to queries (based on the knowledge, expertise, experience and response required)
Opportunity 6: Expand our income sources
Our income is sourced by membership fees, donations, and fundraising events. The long-term viability of AAPEC is based on this income stream.
Our ongoing goals:
- Campaign to increase national membership
- Draw on our networks with hospitals, research centres and Universities