AAPEC – The Next Two Years

This Two Year Plan sets out the areas the AAPEC Committee will focus on in order to better achieve our goals over the coming two years. On 8 July 2020, a new Committee was appointed by our membership to lead the organisation over the coming 12 months. 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. 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 and wider family.

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.

We want to continue to support research and improved clinical care of women diagnosed with preeclampsia and their families.

To achieve our Plan we invite all AAPEC Members to contact the Committee with your ideas and your skills.

AAPEC 2020 Committee

Why action on Preeclampsia matters

Globally, every 6 minutes a woman dies as a result of preeclampsia. Preeclampsia is a complication of pregnancy. Indeed, it is the most common serious medical disorder of human pregnancy. It is sometimes referred to as preeclamptic toxaemia (abbreviated to PET). In Australia 1 in 20 women are diagnosed with preeclampsia and 1 in 100 women will experience severe complications such as HELLP Syndrome or eclampsia. HELLP syndrome is the medical name given to a serious form of preeclampsia involving a combination of liver and blood disorders. 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 (fits), 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 even occur some days 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.

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 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 research into the causes of the disease and appropriate screening techniques and treatment methods.

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 general public and health professionals
• Partner with a range of professional and consumer organisations to advance research and public awareness of preeclampsia
• Contribute to research on preeclampsia either as members of research consortiums or assisting in contributing a consumer perspective in research on preeclampsia
• Maintain the AAPEC website and other social media platforms.
• Raise funds to support AAPEC’s objectives.

The 2020 Committee reaffirms these objectives and functions.

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 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 utilizing the mediums of our Website, Facebook, Twitter and Instagram Accounts.

3. Seven 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.

What we need to do by March 2021 and ongoing

  • 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.
  • Our first new partnerships will focus on NSW or Queensland to reflect current membership of AAPEC with partnerships in all other States and territories to follow .
  • Appoint/Engage with new partners by nominating leaders from each organisation as “AAPEC Ambassadors”
  • Create education events attached to ‘Ambassador’ appointments.

Opportunity 2: Improving our social media infrastructure

Redevelopment of our information products will give rise to the need to further adapt and improve the tools we currently use to disseminate information. Our website, which was significantly improved in 2018-2019, is currently being upgraded. Technical assistance to improve the on-line search algorithm will assist in improving access to women searching for on line information. Similarly, our use of a wider range of social media platforms is currently in development.

What we need to do by March 2021

  • Commence discussion with RMIT Journalism School with a view to becoming a priority organisation for journalism school projects
  • Identify skilled people who might donate or discount the cost of technical support and social media design services.
  • Create at least 3 You Tube Videos based on interviews with our members about their ‘journey’ and with our experts.
  • Create at least two Podcasts
  • Place these on a range of social media platforms
  • Create discussion on preeclampsia in the media by establishing a Twitter Account and messaging regularly with links to You Tube videos.

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 better 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.

Table 1. Tailoring and targeting information

Life events that shape the scope of information required Information gatekeepers &

scope of information
Pre pregnancy / Early pregnancy

 

 Information gatekeepers

Midwives – GPs – Workplaces – Popular media – Fertility services – Personal care services

Scope of Information:

Symptoms – what to look for – early attendance – what is ‘not usual’ – being prepared
Diagnosis

 

 Information gatekeepers

Obstetricians and midwives; Neonatal doctors and nurses; GPs; ED doctors and nurses

Scope of Information:

Why did this happen? What happens next – Risks to me and my baby- specialist care-how will I give birth- time in hospital – support to my family.
Birth and the first twelve months after diagnosis

 

 Information gatekeepers

Midwives- Obstetricians – GPs- Maternal Child Health Nurses –Allied health workers. Parenting groups/services, Health insurers

Scope of Information

Survival, the experience of partners bewildered by what is happening; grief and loss; coming through the experience, isolation due to the birth experience not being that of friends and others in hospital;
Planning a subsequent pregnancy

 

 Information gatekeepers

GPs- Maternal and Child Health Nurses- Obstetricians- Mothers’ Groups, Health insurers

Scope of information

What precautions can I put in place – minimizing risks
Long term health impact Information gatekeepers

Neonatologists and paediatricians, GPs- Obstetricians, physicians, midwives, allied health clinicians,

Scope of information

What does the research tell me? What can I do now to prevent or reduce future risks?

What we need to do by June 2021 and ongoing

Refresh and redevelop our information platforms/packages to reflect the changing information needs of women and their families over time.
Develop or redevelop 3 information packages/products/platforms by June 2021
Disseminate our material via a range of media including Webinars, Facebook, You Tube, Podcasts.
Target information to the relevant ‘gatekeepers’ who are caring for or intersecting with women during each phase. (See Opportunity 1 – Above)
Opportunity 4: A National footprint for AAPEC

While our membership is predominantly drawn from Victoria, we do have active Committee members based in Tasmania, Queensland and New South Wales. There is opportunity to extend our presence in all other States and Territories. We have access to current members who reside outside Victoria and to a network of research centers, health and medical teaching facilities and programs, all of which provide a platform for disseminating information and raising awareness on preeclampsia.

What we need to do by September 2021

Raise our profile in all States and Territories by forming partnerships in all jurisdictions with for example: one training college, one hospital and five maternal health providers.
Develop a Work Plan of how we will do this over the course of two years
Conduct 4 ‘on line’ education and information sessions with various partners in each State and Territory.

Opportunity 5: Counselling and support services

There is currently no phone-based helpline on preeclampsia in Australia. The UK and USA have such services in place. In the UK the service is available Monday to Friday between 9 AM – 9 PM.

What we need to do by 2022:

Either obtain targeted funds to support such a service or collaborate with other existing phone based services to provide phone counseling and information dissemination.
Hold discussions with State and Commonwealth Departments of Health and with Health Insurers

Opportunity 6: Expand our income sources

Our income has been limited to membership fees, donations and fundraising events. The long term viability of AAPEC and our capacity to achieve the reach we aspire to is hampered by very limited funding base.

What we need to do by December 2022:

Drawing on our networks with hospitals, research centres and Universities, commence discussions with, for example, the State and Commonwealth Health Departments as well as relevant health care colleges to fund the development of curriculum and information products on preeclampsia.
Explore non-government sponsorship arrangements with organisations such as Rotary.
Meet with relevant decision makers, fund holders and NGO’s.

Opportunity 7: Refresh our constitution and improve our support to members

Our constitution was developed over 25 years ago. It would be appropriate in 2020/2021 to review its relevance to our organisation today and to re-look at how we might better support our membership.

We will give particular attention to enhancing access to AAPEC by consulting a wide range of consumer groups, hospitals and other health providers in all States and Territories across Australia.

What we need to do by December 2022

  • Conduct a review of the Constitution with attention to ensuring our foundational structure is relevant, democratic and contemporary.
  • Consult with health providers and consumer groups across all Australian States and Territories with the aim of extending access to AAPEC
  • Give consideration to the ‘products’ we offer members
  • Give consideration to the creation of broader range of membership types such as “Friends of AAPEC” ‘Ambassadors of AAPEC’.
  • Review current Life Member category to ensure consistency in appointment.