Bliss | The Legacy Globe

Caroline Lee-Davey is the Chief Executive of Bliss. Additionally, she sits on the Executive Committee of the British Association of Perinatal Medicine, and is a member of the Maternal, Perinatal and Infant Independent Advisory Group. Before joining Bliss, Caroline was the Director of Policy, Advice and Communications at Gingerbread, the single parent charity, where she led on policy and campaigning work as well as overseeing the delivery of multi-channel information and advice services. Caroline was previously Deputy Director of Communications, Policy and Campaigns at housing charity, Shelter. Caroline is a Fellow of the Royal Society of Arts, and was a trustee of Crisis, the national charity for single homeless people, from 2014-2020.

Bliss exists to give every baby born premature or sick in the UK the best chance of survival and quality of life. Please tell us more about the mission and work that you do.

Bliss was founded in 1979 by a group of concerned parents who discovered that no hospital had all the equipment nor the trained staff it needed to safely care for premature and sick babies. Determined to do something, these volunteers formed a charity to give vulnerable babies the care they deserve. Over 40 years later Bliss has grown into the leading UK charity for the 100,000 babies born needing neonatal care every year.

Our vision is that every baby born premature or sick in the UK has the best chance of survival and quality of life. Bliss understands the impact of having a baby in neonatal care and offers lots of support for families who need it. We champion their right to receive the best care by supporting families, campaigning for change and supporting professionals, and enabling life-changing research.

Supporting Families

We offer emotional and practical support to empower families and equip them with the knowledge and skills they need to provide the best possible care to their baby, for however long they live and for however long their stay in neonatal care. We provide information about caring for premature and full-term sick babies at every stage of their hospital journey, and after they have gone home.

Through our network of dedicated volunteers, we provide face-to-face and email support, meaning families have access to practical information and a listening ear when they need it the most.

Supporting Professionals

We champion family-centred care, which places parents at the centre of their baby’s care while they are in hospital and is hugely beneficial for both babies and parents when they go home. Through the Bliss Baby Charter, our flagship quality improvement programme for neonatal units, we work with healthcare professionals to help them provide this high-quality care and make practical improvements to involve parents more in their baby’s care.

We also provide training and facilitate a community where professionals can share information and support each other to provide the best possible care. We are committed to ensuring consistent, high-quality care is available to every premature or sick baby who needs it so they have the best chance of survival and quality of life.

Campaigning For Change

We undertake policy and campaigning work to ensure babies' voices are at the heart of decision-making and their best interests are always put first. Through bold, evidence-based campaigns we are able to shine a light on the issues affecting care for babies. In partnership with parents and professionals, we aim to secure changes in policy, investment and standards of care for premature and sick babies and make a real and lasting difference to neonatal services across the UK.

Every year, over 100,000 babies are cared for in neonatal units in the UK because they have either been born prematurely (before 37 weeks of pregnancy) or full-term (after 37 weeks) but sick. This means that around 1 in 7 babies born in the UK each year are admitted onto neonatal units.

60,000 babies are born prematurely in the UK each year (that’s 1 in every 13 babies) and most premature births are spontaneous, with no clear cause. Many of these babies will need urgent neonatal care after birth.

Premature birth can result in lifelong conditions such as cerebral palsy, behavioural and long-term health problems. Some research has also found that the earlier a baby is born the higher their risk of having special educational needs at school.

The UK has one of the highest rates of premature birth in the world, ranking 134 out of 184 countries. This is higher than many countries in Europe and higher than Peru, Chile and Egypt.

Over 60 per cent of babies in neonatal care are born full term but sick. The five most common conditions are respiratory problems, infection, hypoglycaemia, jaundice, and asphyxia/HIE.

The emotional and financial burden of having a baby in neonatal care can be huge. Parents are more likely to suffer from post-natal depression and on average they spend an extra £282 per week while their baby is in hospital.

Premature birth is the leading cause of death among children under one in the UK, and children under five worldwide.

The average length of time a baby spends in neonatal care is eight days but babies born at less than 27 weeks of pregnancy spend an average of 93 days in hospital.

The average cost to the NHS of a day of neonatal care is £805, meaning that if every baby spent just one day less in neonatal care a staggering £60 million would be saved each year.

Two-thirds of units in England do not have enough medical staff to meet safety standards and 70 per cent of intensive care units look after more babies than is safe. In 2017 in the UK, 1,267 babies who were born after 24 weeks’ gestation died in their first 28 days of life. Overall, neonatal mortality rates have declined since the 1980s. This means that generally fewer babies per 1000 births are dying each year.
What inspired you personally to do the philanthropic work that you do and how did you start out?
I have spent my whole career working in the UK charity sector and joined Bliss as Chief Executive over 7 years ago. I was really drawn to our cause as Bliss plays such a valuable role in giving a voice to the most vulnerable in our society – babies born premature or sick – who don’t have a voice themselves.
All of Bliss’ staff are hugely passionate about doing everything we can to improve the lives of babies and their families, and I remain humbled by the commitment we see from parents who have gone through a neonatal journey and are so keen to support our work to improve the lives of babies born in the future. It is a real privilege to represent these families and babies in the work I do at Bliss.
What does the word Legacy mean to you? How important do you think it is to give back as part of our own legacies?
For me, the word legacy means making a positive difference in the world. At Bliss, I find it hugely inspiring that so many parents who have had a baby born premature or sick and admitted to neonatal care want to leave a positive legacy from this experience – whether their baby has recovered and been discharged home, or if their baby has sadly died – and choose to support Bliss as a way of channelling this legacy of making a difference for future generations of babies.
One way that parents can do this is through setting up a Sunshine Fund, in celebration of their baby, or a Precious Star Fund, in memory of a baby who has died, so that they can focus their fundraising as their baby's own legacy and contribution to making a difference in the world. For me personally, seeing parents who have gone through such a traumatic experience wanting to give back as part of their baby’s legacy, always reminds me that giving back is the most powerful gift that we can give.
How can our readers support Bliss?
The community of The Legacy Globe can help Bliss by financially supporting our vital work and by leveraging their networks to spread awareness of the challenges faced by babies needing neonatal care.
As a charity, Bliss’ work relies on the support of generous donors and partner organisations, including Pampers, WaterWipes, Tu at Sainsbury’s and Pregnacare Vitabiotics. If any of your readers would like to help give premature and sick babies the best chance of survival and quality of life, either as an individual or via their organisation, we would be delighted to hear from them. They can contact our Director of Fundraising, Richard Moody, at richardmoody@bliss.org.uk to start a conversation, or they can find out more about donating directly to Bliss at https://www.bliss.org.uk/support-bliss/give-money.
Your readers might also choose to fundraise for and raise awareness of Bliss within their networks by hosting an event, for example a ball, formal dinner or auction. Any readers interested in doing so can also contact Richard, as above, and refer to our website.

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