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I'm an NHS Consultant Obstetrician and Gynaecologist and the Lead for Postnatal Services at the Chelsea and Westminster Hospital, London. We decided to develop Beyond Birth Living Library after my team and I spent years listening to women and parents who came back to postnatal clinics, months after the birth, because of a difficult birth experience.

 

They crossed the economic divide and they came from every culture. They had one thing in common: they had left maternity care and were still not fully healed.

 

The majority had recovered physically and often didn’t meet the formal criteria for referral to perinatal mental health services for concerns like anxiety, depression, or trauma. But this didn’t mean that there wasn’t a need for help and support. They felt alone and lonely in their experience. Parents sought understanding and support to make sense of their experience, without judgement.

 

Most of these parents in the postnatal clinic fell into one of these groups:

• Emergency operative birth (often a first birth)

• Re-admission to the hospital (mother or baby)

• Mothers who had to return to operating theatre

• Mothers or babies whose care required a stay in the intensive care unit 

• Parents who had difficulty accessing care – perhaps because of language barriers, cultural differences, learning difficulties, or mobility, visual and hearing challenges

 

Often, they had started the pregnancy as clinically low risk, working towards a normal birth. The unexpectedly difficult birth experience had hit them at a personal level. Many seemed to believe they had failed their baby, were not good mothers, couldn't connect to their baby or feel that expected immense love, or that being deprived of this magical time they should have had with their new born would lead to problems down the road. Few still couldn’t look at their baby without remembering what the birth had put them through or the consequences the birth left them with.

 

Many of the parents felt that friends and family didn’t understand. They found it difficult to move on and be grateful that they and the baby were now well.

 

We recognised that there was a need that was unmet. This is why we came to create Beyond Birth Living Library: to bring the support parents needed beyond the traditional medical model.

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Learning from the Swedish approach: Qulturum

 

The Qulturum Center for Learning and Innovation in Healthcare in Jönköping, Sweden, has a long-established internationally recognised peer support system, called a Living Library, as part of their healthcare model. The approach taps into the learnings from a lived experience to support physical and mental health care.

 

A Living Library is a collection of people who by sharing knowledge and understanding from their life experiences help others who are going through similar experiences.

 

In 2019, our postnatal team at the Chelsea and Westminster Hospital, in collaboration with ChelWest Maternity Voices Partnership and NIHR CLAHRC NWL, won the Health Foundation Innovating for Improvements Award to transfer the Qulturum living library model to develop Beyond Birth Living Library in the U.K.

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We are grateful to the NHS London Maternity Clinical Network’s support with funding to remunerate Service User Voices representatives for programme management as we work through expanding the support across London.