Action on Postpartum Psychosis (APP) is the national charity for women and families affected by postpartum psychosis.

  • APP is a collaboration between women and families with personal experience, world-leading academic researchers and specialist health professionals.

 

Action on Postpartum Psychosis: the charity

  • Supports women and families - via an award-winning peer support service and comprehensive patient information and resources.
  • Raises awareness of PP and campaigns for improved services.
  • Facilitates research into all aspects of the illness.
  • APP is the largest network in the world of women with lived experience of PP. Together, our researchers have published the most research into PP globally.

3,300 users with lived experience

  • APP’s peer support forum has over 3,300 lived experience users, sharing experiences and receiving support from trained volunteers. Peer volunteers support around 250 women each year throughout the UK with one-to-one email and video call support. APP manages nine regional peer support café groups and five NHS partnership projects based in Mother and Baby Units and Perinatal Community Teams.
  • APP has almost 100 volunteer regional representatives, who disseminate information to health professionals in their region, support service development, deliver health professional training, or support on a regional project.
  • Action on Postpartum Psychosis is a network of women in the UK who have experienced PP and who want to raise public awareness and increase research into the condition. It is run by a team of perinatal academics, women who have experienced the illness, and health professionals.
  • APP was set up in response to the lack of information available to women and their families and lack of knowledge about the causes of the condition.

 About postpartum psychosis

  • Episodes of severe mental illness such as mania or psychosis follow 1-2 in 1,000 deliveries.
  • An average size maternity unit would see 8-10 cases of rapid onset psychosis following childbirth in a year. Around 1,400 cases occur each year in the UK.
  • It strikes at a time when families are full of expectation. Mothers feel loss, guilt and responsibility for missing out on the early months of motherhood. Dads or co-parents become responsible for a newborn or are separated from their families. They do not know if their partners will fully recover.
  • PP can affect women from all social classes, occupations, and educational backgrounds. Often it occurs ‘out of the blue’ to women without any previous psychiatric history.
  • The stakes are high if the illness is not identified sufficiently early, or is poorly managed, both in terms of maternal outcome (including risk of suicide) and child outcome (including rare and tragic cases of infanticide).
  • According to MBRRACE-UK, suicide is the leading cause of maternal death in the UK. Cases of postpartum psychosis contribute significantly to maternal suicide statistics. Completed suicides are the tip of the iceberg in terms of ‘near miss’ events occurring to women who develop PP.
  • PP is eminently treatable, but services must respond quickly and appropriately to these psychiatric emergencies. Episodes have a rapid onset, usually within days of delivery and may escalate to full-blown psychosis quickly – within hours or days.
  • Although episodes of PP are among the most severe illnesses seen in clinical practice, PP also has one of the best prognoses.
  • Acute symptoms are similar to that of bipolar disorder and may include:
    • extreme elation or euphoria,
    • rapid mood changes, or depressed mood,
    • the rapid onset of unusual beliefs,
    • visual and auditory hallucinations, and
    • extreme confusion.
  • Behaviour can be very bizarre. Episodes can be very frightening for women and their families.
  • The causes of PP are unknown, but the dramatic hormonal and biological changes that occur at childbirth are thought to be involved. There is some evidence of a genetic component to the illness and of a link with bipolar disorder. One in 4 women with a history of bipolar disorder experience PP following childbirth.
  • The majority of women are substantially recovered within a few months, but full recovery and coming to terms with the illness may take some time longer.
  • Recovery is a difficult and lengthy process. Factors that contribute to these difficulties include:
    • limited availability of information about PP and recovery,
    • isolation caused by lack of visible others who have experienced the illness,
    • poor awareness in the general public and media,
    • the stigma and shame associated with experiencing mental illness, particularly at this time when women have high hopes of new motherhood,
    • difficulties coming to terms with the experience of a mental illness and behaviours during the illness,
    • low levels of specialist psychological and practical support following hospital admission with managing recovery, looking after a baby, rebuilding relationships, trust and mothering confidence.
  • Misguided portrayals in the media contribute to mothers' feelings of isolation and to difficulties in discussing their experiences with other mothers. Often, when women or their partners search the internet for information about their illness, alarmist media stories about mothers harming their babies are the first they encounter.
  • PP is not simply a more severe form of postnatal depression. In fact, many mothers with PP do not experience any symptoms of depression at all, rather they experience extreme elation, spirituality, and quickly lose contact with reality. The majority of women therefore are unable to seek help for themselves and others must obtain help for them.
  • Research into PP is vital in order to understand how pregnancy triggers the illness, to help to predict women at risk, to understand factors that increase the risk of an episode and to develop targeted treatments.
  • Research is needed into the best management practices to improve women’s experiences of care, and ensure good outcome for mothers and their babies.
  • Improved availability of information about the illness, recovery and support is vital. This can be achieved by partnerships between researchers, support organisations and those with personal experience of PP.