15th April 2019
Today, Leo’s, a charity which supports families and staff through the neonatal journey and beyond, has released worrying findings which reveal that parents who have premature or sick babies are struggling with their mental health long after being discharged from hospital. The findings also revealed with the impact of the neonatal pathway on siblings, grandparents and healthcare professionals involved in often distressing situations.
To help raise awareness and understanding of the long-lasting impacts on the mental health of all those involved in the neonatal journey or neonatal care Leo’s has launched Neonatal Mental Health Awareness Week (15-21 April), to campaign for better provision.
Leo’s has the backing of leading charities and organisations including, The Smallest Things, Ickle Pickles, Bliss, NEC UK, Child Bereavement UK, Borne, Elsie’s Moon, Isla’s Journey, V Create, the Northern Neonatal Network and The South West Neonatal Operational Delivery Network.
A survey ran by Leo’s was conducted on social media, aiming to capture a snapshot of the neonatal mental health landscape. The responses from multi-disciplinary health care professionals and families was overwhelming and will be used to start much-needed conversations.
Findings suggest that while better mental health care is still needed on neonatal units, it should also be continued into the community as when families finally make it home, their journey is far from over. The trauma experienced on a neonatal journey is having a lasting impact on everyone involved. An astonishing 79% of parents admitted that they felt their mental health had been affected by their neonatal journey,and 41% of parents and 40% of grandparents were self-diagnosing mental health conditions such as Anxiety, PTSD, Post-natal Depression OCD and panic
disorders. 33% of mums, 25% of dads and 33% of grandparents all required
anti-depressants or anti-anxiety medication after the neonatal stay. Siblings were also affected with 54% of respondents saying their older children had behavioural changes and 25% stating their older children became afraid of death or illness. 18% of respondents accessed support for their older children and 12% said their older children needed counselling.
Also, a worrying 46% of respondents had suffered relationship trouble. Those parents who went on to have another baby reported anxiety and lack of support in a subsequent pregnancy, with 49% saying they found the pregnancy stressful, and 78% saying they felt they lacked emotional support antenatally. 85% of mums and 70% of dads who suffered baby
loss on a neonatal unit said they did not receive support for the trauma they experienced due to neonatal loss.
Employment is also affected with 91% of dads reporting that they had struggled to concentrate when they returned to work and their baby was still in neonatal care. 20% of mums had taken sick leave on the back of their maternity leave. Furthermore, 27% of mums and 16% of dads took time off work to deal with triggers and anxiety as a direct result of their neonatal stay – with 42% of mums and 21% of dads leaving work altogether in order to become full-time-carers for their children.
Although they are affected by certain elements of their job, 61% of neonatal staff who responded said they had good support from their employer and colleagues. The NNAP (National Neonatal Audit Programme, delivered by the Royal College of Paediatrics and Child Health) recorded that in 2017, 1 in 7 babies born in Great Britain required neonatal care, amounting to staff providing more than 1 million days of neonatal care per year in 179 neonatal units it collected data from.
Dr Rebecca Chilvers, Lead
Clinical Psychologist for the Neonatal Unit at Evelina London and for Neonatal Mental Health Awareness Week said: “We need to look after our clinical staff to deliver the care these families need – they may be superheroes, but they are not superhuman.”
Leo’s founder Lottie King said: “Leo’s is campaigning for funded and planned mental health support for everyone involved in the neonatal pathway and to raise awareness of the effects of sick and premature babies on the mental health of everyone involved.
Neonatal care affects not only the immediate but the extended family, as well as the wonderful professionals who work so hard to try to get these babies home. We’d like to see more resource given to supporting these groups as mental health issues can have far-reaching effects on employment and long-term quality of life.
“We’ve launched Neonatal Mental Health Awareness Week to provide support to anyone affected by mental health illnesses, pregnancy loss and the death of a baby. Together with health professionals and services, we are committed to raise more awareness of mental health issues and the neonatal journey and unite for better care across the country.”
Dr Chilvers added “These findings are a call to action. We cannot underestimate or ignore the significant impact of having a baby in neonatal care on mental health. Increasing provision to provide psychological support for parents will improve outcomes not only for their wellbeing but that of the baby and the whole family”.