Small Wonders: National campaign responds to inequality in UK neonatal services Today (June 19th) sees UK-based child health charity Best Beginnings, working with six medical Royal Colleges, UNICEF and more than 15 other organisations, launch the national Small Wonders Change Programme implemented by over 400 doctor, nurse and midwife ‘Champions’ within neonatal units throughout England and Scotland to support health professionals in their work with families who have a sick or premature baby, in ways that have been proven to improve babies health. The initiative delivers to the needs of parents as highlighted inthe recent national survey of ‘Parents Experiences of Neonatal Care’  which identifies huge variability in the quality of support for families with a baby cared for in neonatal units across the UK. The Picker report 2011 of over 9000 parents also stated that 43% of parents felt they weren’t given enough information about the neonatal unit and 24% felt that they couldn’t talk to staff about their worries and concerns. Furthermore, additional independent research has found that there is also widespread variability across UK hospitals in the percentage of babies who are breastfeeding on discharge with rates varying between 0 and 100% At the centre of the change programme is the Small Wonders DVD, which follows fourteen families, charting the real-life experiences the parents faced as they met, cared for, and returned home with their premature or sick baby. It is designed as a tool to enable neonatal staff to support and advise parents through their baby’s stay, and encourage parents to play a pivotal role in the care their baby receives in ways that have been proven to improve their baby’s health, interventions such as expressing breast milk and provision of skin-to-skin contact also known as Kangaroo care. The Small Wonders DVD was made with the support of over 100 families and over 200 experts in neonatal care including consultant neonatologists, representatives of Royal Colleges, specialist dieticians and infant feeding specialists who provided important feedback at key stages in the production process. Created in conjunction with 10 hospitals across the UK, the Small Wonders DVD is designed to facilitate important and clinically significant changes in behaviour when presented to families through health professionals. The DVD has been made to ensure that parents have the insight, guidance, confidence and support they need, from when they are first told they may be having a premature baby, through those first crucial hours after birth to their baby’s first birthday. There are 12 films on the DVD each covering a different topic, which parents can select individually depending on the support they need. Films include “First hours”, “Expressing breast milk”, “Holding your baby”. An information booklet is also included with the DVD in which parents can record their thoughts and feelings as well as their own baby’s progress. Professor Cathy Warwick CBE, General Secretary, Royal College of Midwives says; “I am delighted that the Royal College of Midwives has been a stakeholder on the Small Wonders DVD since the project got underway in 2010. It was so important that this DVD was made, as it will significantly contribute to supporting parents with premature babies at what could is often a very turbulent time for them. Once again Best Beginnings have created a powerful resource that will make a real difference to the lives of the families across the UK. ” The launch of this DVD marks the culmination of six years of planning and two years of intensive work and collaboration. We set about making this DVD not only because of the evidence for the need but also because on a personal note, it is the DVD I would have wanted when my own sons faced their own challenges in infancy and my eldest developed meningitis at just eight days old. Our research told us that parents of premature or sick babies feel understandably overwhelmed by their experience. When their baby is so vulnerable they can feel that only the medical staff are able to provide the care they need, when in fact they themselves can have a vital role to play. In addition to being available for free in neonatal units across the UK, the Small Wonders DVD is available to purchase for £5 from www.bestbeginnings.org.uk/pages/shop/ Small Wonders’ Champions: Best Beginnings has recruited a unique network of over 400 neonatal nurses, midwives, doctors and allied healthcare professionals who have become “Small Wonders Champions”, across the UK. The Small Wonders Champions are working, often in multi-disciplinary teams, to ensure that the Small Wonders DVD will be given to all parents in their hospital faced with the prospect – or unexpected arrival – of a premature or sick baby. Over the last year, Best Beginnings has been actively supporting its Small Wonders Champions to become “catalysts for change” in their hospitals and help them ensure that the DVD is used as effectively as possible to drive change towards more family-centered care. To this end, the charity has hosted “pre-launch” events for Champions and provided then with a range of resources and training to support them in their role of embedding in their hospital and ensuring that hospital staff have familiarised themselves with the content of the films before the parents receive the DVD. In the last six weeks, Best Beginnings has sent out more 65,000 free DVDs to 115 hospitals across the UK with Champions who have sent back special “planning forms” to the charity. Many of these hospitals have begun giving the DVD to parents from today, with other hospitals planning to begin distribution to parents in the next few weeks, once all staff has seen the DVD and a clear distribution plan is in place. To this end, the eventual aim is for all hospitals with a neonatal unit to have at least two champions, with one from the neonatal unit and one from midwifery. Annie Aloysius Senior Clinical Specialist Speech and Language Therapist at Imperial College NHS Trust says “ “As one of the 400+ Small Champions across the UK, I have been working hard to get all the staff in my hospital prepared for the launch of Small Wonders. Best Beginnings have provided us with an excellent range of ideas and resources and we are really excited to get this DVD into parent’s hands. We will use it to help support the parents on our neonatal unit and it will be the start of an exciting programme for change for all families across the UK. Parents will expect the best family centered care for their babies and this DVD will help show them how.” Quotes are also available from: Prof. Maryon-Davis, Public Health expert and Chair of Trustees for Best Beginnings Dr Hilary Cass, President of the Royal College of Paediatrics and Child Health Dr Tony Falconer, President of the Royal College of Obstetrics and Gynagology Dr Alan Gibson, Consultant Neonatologist, Sheffield Dr Timothy Watts, Consultant Neonatologist, St Thomas’ Prof. Lesley Page, President of the Royal College of Midwives Annie Aloysius, Small Wonders Champion and Speech and Language Therapist Small Wonders case study and mum of twins born at 28 weeks, Sinem, says: “I really believe this DVD will make a difference to people’s lives at a time when you feel so lonely, you feel so isolated… it will empower people and make that start as easy as possible in what is a really, really difficult time.” The charity undertook extensive research with families themselves revealing how much parents will benefit from the Small Wonders DVD and change programme. Here are some quotes from parents who viewed “rough-cuts” of the DVD: “I absolutely hate reading … and really struggled to plough through most of what we were handed. A DVD … would have been far more appealing, and I could have watched this whilst staying in hospital, in the small hours, as I was not sleeping anyway.” (Mother) “I think it is a fantastic idea! I really do wish that we would have had this, it is a totally overwhelming, alien, scary experience to have a child in neonatal and to be given a DVD will help you with what to expect.” (Father) “Just to know about all the tubes and equipment would have been so helpful – it’s all so scary when you see it for the first time.” (Mother) “I had no idea about the importance of starting to express [breastmilk] within the first six hours. If I had known that, then maybe I could have breast fed. No one suggested it to me until the third day.” (Mother) “I thought the section on Kangaroo care was excellent….. had these films been available to us, we would have felt more comfortable asking about it.” (Father) “So you know you’re not alone in feeling overwhelmed and exhausted.” (Mother) In addition the DVD was piloted in 17 neonatal units in January 2012 and here are some quotes from parents involved. “I found the films useful as I am in a similar situation to some of the parents and it gives a good idea of what to expect “ Mother “informative and realistic” (Mother) Best Beginnings is a small charity committed to having a big impact on child health across the UK. You can find out more about their work and support them at http://www.bestbeginnings.org.uk/appeal/donate-for-child-health. *ENDS* Notes to Editors: Small Wonders DVD Contents There are 12 films each covering a different topic, which parents can select individually depending on the support they need. An information booklet is also included in which parents can record their baby’s progress as well as their thoughts and feelings. Introduction Birth First Hours Expressing breast milk Holding your baby Your time in hospital Feeding Independently Preparing for home First months at home Twins and Triplets Bereavement One Year on « The Small Wonders programme will be independently evaluated by Coventry University. « For more details visit the website: www.bestbeginnings.org.uk « Best Beginnings is a UK based charity dedicated to reducing health inequalities in under-two-year-olds by helping families give their baby the best possible start in life. « Email: [email protected] « Twitter: @BestBeginnings @wonders-small @AlisonBaum « Phone: 020 7443 7895 « Facebook: Best-beginnings « Small Wonders DVD can be purchased separately for £5 + P&P from the website or for £6 from eBay POPPY Steering Group. Family centred care in neonatal units. A summary of research results and recommendations from the POPPY project. London: NCT; 2009. Picker Institute Europe Parents experiences of neonatal care. November 2011.