“Baby Lifeline has been amazing in terms of both highlighting issues through the Mind the Gap projects – which showed gaps in important training nationally – and also meeting a need through training the frontline. I am keen to further lend my support through Baby Lifeline’s advisory panels: the Family Voices Group and the Multi-Professional Advisory Panel.”
Nicky Lyon
Baby Lifeline is proud to introduce a new member of the team as Nicky Lyon joins as Co-Chair of the Family Voices Group alongside Susanna Stanford. Nicky will also join the Multi-Professional Advisory Panel.
Nicky has been working to improve safety in maternity and neonatal services for many years, campaigning for improvement and ensuring that family voices are represented.
Nicky’s Story
Nicky’s son, Harry, was born in 2008. Though the pregnancy had been healthy, Harry suffered brain damage during labour. He spent time in the neonatal unit and was then cared for at home. Harry died in 2009 aged 18 months.
After Harry’s birth, Nicky began looking for answers to the questions that were unanswered – “How many other Harrys are there? How many other children have been left brain injured during term labour? Who is monitoring these cases? How do we know if organisations are offering a safe service?”
Her letters and questions to local and national organisations revealed that even at government level, there was no data (at that point) which kept track of how many term babies were left brain damaged as a result of problems in labour. Through this process, Nicky was invited to join local and national committees as a patient voice representative.
Nicky’s Campaign Work
In 2013 Nicky set up the Campaign for Safer Births (CfSB) with Michelle Hemmington, whose son, Louie, also died following brain injury during labour. The Campaign aims to raise awareness of birth injury and stillbirth and to work for improvements in the safety of maternity services. They have also campaigned for Coroners to be given the jurisdiction to be able to investigate late term stillbirths. In 2018, Tim Loughton MP included a clause in his Private Members Bill to give Coroners the power to investigate late term stillbirths. Nicky and Michelle are still waiting for the results of the public consultation to be published.
Nicky has been a service user representative on local and national patient safety projects including:
- Royal College of Obstetricians and Gynaecologists Each Baby Counts programme
- Co-Chair of the NHS England Maternity Transformation Programme Safety Workstream
- Specialist Advisor to the Independent Investigation into East Kent Maternity Services
- Currently NHSE Maternity and Neonatal Programme national service user representative
- Involvement in new clinical and academic research projects
She says, “I’m a ‘service user representative,’ but how do you represent so many different views? I try to put forward a breadth of perspectives, and I also find myself supporting the needs of the staff too. Having well-trained, sufficient staffing is so important for patient safety.”
Nicky’s work with Baby Lifeline
Nicky was first contacted by Judy Ledger (Founder and CEO of Baby Lifeline) in 2013 when Judy heard about their shared interest in maternity and baby safety. Since then, Nicky has spoken at two of Baby Lifeline’s National Maternity Safety Conferences (January 2020 and September 2022) and been involved in Baby Lifeline Training courses sharing her perspective as a service user (2023).
As Co-Chair of the Family Voices Group and member of the Multi-Professional Advisory Panel, Nicky will be helping to further bring service user voices into Baby Lifeline’s research, training and charity projects.
“Baby Lifeline has been amazing in terms of both highlighting issues through research projects, and also meeting a need through training. I am keen to further lend my support by joining Susanna and the team as Co-Chair of the Family Voices Group, and becoming a member of the Multi-Professional Advisory Panel.”
Family Voices Group
Baby Lifeline’s Family Voices Group brings the voice of families to everything Baby Lifeline does to make birth better and safer for all mothers, birthing people, and babies. We’re so proud to have members who have a range of experiences and insights to inform our work.
Baby Lifeline’s Multi-Professional Advisory Panel (MPAP) is made up of dynamic, dedicated professionals who work in healthcare, patient safety, and law. Each member of the Panel is an expert in important aspects of care. The Panel steers the work of the charity to ensure it is impactful and makes a difference.