Over 100 children’s health professionals, academics and parents from across the UK came together at the Kings House Conference Centre in Manchester last month to address the core challenges in enabling children and young people to be at home rather than face long periods in hospital.
Presentations and discussions centred on the central and current challenges associated with delivering high quality care at home. This included the future of the children’s nursing workforce, the training of parents and professionals to provide nursing interventions, the emotional and practical impact of delivering care at home and the innovative solutions required to ensure that families are properly supported in an uncertain and ever changing environment. The event also saw parents share and discuss their own first hand experiences.
There was much discussion from panellists and delegates alike during a question time panel that ranged from the role of family key workers, to the implications of the new Nursing and Midwifery Council (NMC) nurse training standards.
What became clear is that the challenges facing our growing population of UK families caring for children and young people at home with serious or exceptional health needs are increasingly complex. For many, their child’s needs will change frequently and the level of support they require to be safe at home is crucial. Providing this care is a 24/7/365 commitment and often with many obstacles and little respite.
A future workforce fit for purpose?
Julie Bayliss, Head of Service at the Louis Dundas Centre for Children’s Palliative Care at Great Ormond Street opened the conference outlining the current challenges for children’s nursing. She questioned whether it is fit for purpose in delivering the care at home agenda. Looking forward, she highlighted new issues which will impact on the future workforce.
The population of children and young people living with complex care needs is projected to grow by 7% between now and 2022. Meanwhile the complex nature of many conditions affecting children and young people along with reliance on technology such as long term ventilation is also increasing.
There is a national shortage of children’s nurses and huge challenges ahead in terms of recruitment, retention and training. Julie highlighted the need for a ‘reliable, continuous supply of high quality nurses and other health care professionals to provide safe and high quality care at home, adaptive to changing health care needs.’
New models of care
The team from NHS Ayrshire and Arran shared their ongoing experience of shaping a more holistic approach to providing care to children and young people in their area. They shared their challenges in becoming more flexible and responsive to the needs of families across a wide and often challenging geographical area.
Dr Sharon McCloskey recommended moving away from a crisis-led intervention model of providing emotional support to families, towards a model of prevention and early support. This, she argued could be achieved by enhancing parent and family resilience and their ability to do well in the face of significant adversity.
Building the competence to care
‘One size does not fit all’ was a recurring theme throughout the day, initially highlighted during a presentation about family training by WellChild Nurse Tracy Brooks from Royal Manchester Children’s Hospital and Jo Keating, Education Lead within the Hospital to Home team at the Royal Brompton Hospital, London.
Their exploration of how to empower families with the competence to deliver care at home provided great insight into the theory of learning and the challenges of applying this when training families to be able to cope at home both during the early stages and as their child’s needs changed. One startling statistic from a recent WellChild survey highlighted that 86% of families had not had their training needs reassessed.
The presentation touched on factors such as the different training methods available, the range of resources used to support this training and the environment in which learning takes place. This ranged from the bedside, the family home and to simulation environments such as the WellChild ‘Better At Home’ Suite at Edge Hill University.
The success of this innovative training facility was highlighted in a presentation by Paula Keating, Associate Head of Nursing Education at Edge Hill University and Esther Bennington, WellChild Nurse Specialist- Parent Trainer at Alder Hey Children’s Hospital, Liverpool. They touched on the experiences of parents who had used the simulation suite as well as the benefits to wider family members.
Innovation and digital health technology
The ‘Better At Home’ Suite was just one current example of how innovation can play an important part in delivering the care at home agenda both now and in the future. Another approach was proposed by Dr Lisa McCann, Senior Lecturer in Digital Health and Care at the University of Strathclyde.
In her presentation, Dr McCann shared the results of a study looking at the merits of an e-supportive care system to improve support for children with undiagnosed or exceptional care needs.
Family experiences first hand
One of the highlights from the conference was the insight provided from parents themselves on the reality of life caring for children at home with complex medical needs.
#notanurse_but Mum and video diarist, Leanne Cooper along with WellChild Nurse Rachel Gregory from Nottingham Children’s Hospital shared how their combined journey from both a parent and professional perspective mirrored similar challenges.
Together with Professor Bernie Carter, Professor of Children’s Nursing at Edge Hill University, parents Craig Hatch and Jill Evans shared their own experiences of the wider challenges and responsibilities that families face. They discussed how the #notanurse_but campaign had helped to shine a visual light on their experiences and enabled them to share this with a wider audience. They articulated how having the right care package is so vital to families in enabling them to be able to stay at home but more importantly to be able to have time together as a family.
A way forward
What the conference highlighted was the need for urgency in finding new and innovative solutions to the complex array of challenges ahead for both professionals and parents, from addressing critical workforce shortages to establishing more flexible, responsive models of care. As the national charity for seriously ill children, young people and their families, WellChild will continue to lead the way in addressing these challenges and giving these families the voice they deserve.