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Neonatal care booklet launched

A new publication designed to support parents during their baby’s time in neonatal care which has been developed for parents, by parents, was launched yesterday.

The neonatal booklet provides helpful information support and advice for carers, siblings and grandparents and focusses on a parent’s perspective.

Minister for Public Health, Maureen Watt, was at Edinburgh Royal Infirmary yesterday to meet parents from the South East and Tayside Managed Clinical Network for Neonatal Services. She commended their commitment and dedication to developing the resource, which is now available at all neonatal units in Scotland.

Minister for Public Health, Maureen Watt, said yesterday:

“It is difficult to underestimate the emotional and practical upheaval and trauma that parents face when their baby is in a neonatal unit.

“While it is comforting to know that our premature or sick babies receive the best care available by our health professionals, we are determined to make sure parents get the best possible emotional and practical advice and support. No one is better placed to provide that guidance than parents who have been through the experience themselves.

“This guide provides parents with lots of useful information and advice. It gives details such as what care their baby can expect to receive to more practical advice on what parents need to do when their baby is ready to go home.

“I commend the parents who worked on this guide in their own time particularly while bringing up their babies and some also working - I want to thank them for their commitment and dedication, and using their own experiences to provide an invaluable resource to other parents.”

The South East and Tayside Managed Clinical Network for Neonatal Services was very keen to have service user engagement as part of its commitment to service improvement. Establishment of a parent sub-group enabled parents to share their experiences of neonatal care and provide input to decisions from a service user perspective.

The group highlighted that times of 'transition' in neonatal units could be very stressful with parents unsure what to expect when their baby was moved between levels of care. They also felt that information which clearly explained each stage of care in a neonatal unit would have been helpful and that information written by parents for parents, capturing the parent’s perspective, would be really beneficial.

Parents Marie Storrar, Sam Wallace, Dawn Crosby, Jennifer Daily and Carolyn Gall consequently developed the booklet using their own personal experiences. Review and feedback was provided by staff, other parents, Managed Clinical Networks for Neonatal Services in the West and North of Scotland, toddler groups and Bliss – the UK charity who help provide care and support for premature and sick babies and their families - and the finalised booklet was distributed to South East and Tayside neonatal units throughout August and September 2014. 

Other neonatal units in the West and North of Scotland found the information helpful and Scottish Government has now funded the publication and distribution to all neonatal units in Scotland.

Marie Storrar said yesterday:

“As a group of parents who have all spent time in a neonatal unit we wanted to do something tangible to help other parents, carers, grandparents who find themselves in a neonatal unit.

"We discussed our own experiences and what would have helped us at the time and agreed that a leaflet that helped explain the different stages of care delivered in a neonatal unit, and the transition between those stages, would be our focus. The leaflet quickly expanded and in collaboration with key team members on the neonatal unit at Simpsons, SEAT and elsewhere within the NHS the booklet being launched today was created.

"We are thrilled that, with the support of the Scottish Government, the booklet is reaching neonatal units across the whole of Scotland. From the bottom of our hearts we hope that anyone and everyone who finds themselves in a neonatal unit will get some help, hope and support from it.”

Background:

• The SEAT Regional MCN for Neonatal Services was established in 2011 and is a collaboration between NHS Borders, Fife, Lothian and Tayside. The Network supports and facilitates the delivery of consistent, equitable, high quality services to meet the needs of neonates and their families in the South and East of Scotland, through development of clinical pathways, audit, co-ordination of education and training opportunities and workforce planning. A Parent Sub-Group was established in 2012 comprising parents with experience of having babies cared for in Neonatal Units. The Group is very actively engaged in the MCN and members regularly attend the MCN Steering Group. 
• Neonatal Care in Scotland: A Quality Framework was published on 5 March 2013 and sets out the requirements for the provision of high quality dedicated family friendly facilities appropriate for parents and families of babies in neonatal care
• The Framework supports the NHS in Scotland in its commitment to deliver evidence based, safe, effective and person centred neonatal care. The Framework defines the approach to the provision of high quality care for neonates and their families.
• A Managed Clinical Network (MCN) is a network of a variety of health staff and organisations from primary, secondary and regional health care working together to make sure that high quality clinically effective services are fairly distributed.
• There are three MCNs in Scotland (North, South East and Tayside, and West).