Seriously ill children and their families in Nottinghamshire, Derbyshire and Lincolnshire are getting vital help as their parents receive training to care for them at home at a new Better at Home Training Suite.
WellChild, the national charity for seriously ill children, is funding the project which is a collaboration between Nottingham Children’s Hospital (NCH) and the University of Nottingham, School of Health Sciences (SoHS). The project was made possible through grants from The Wolfson Foundation and the Hospital Saturday Fund.
WellChild Better at Home training suites provide home-from-home spaces where parents and carers can learn the often life-saving interventions needed by their child in a safe environment with simulation equipment. They provide the opportunity to train extended family members to widen the support network for families as well as training for health and other professionals who may be involved in the child’s care. Set-up like a child’s bedroom, they provide a safe space to prepare for providing care in the home.
The aim of clinical skills training for parents and carers is to supportively nurture their competence and confidence in caring for their child and thus support early discharge from hospital and prevent hospital readmission. The training aims to empower families and unpaid carers to provide safe and effective, evidenced based care for their child with complex and often changing medical needs.
Often, training for parents and carers takes place at a child’s hospital bedside prior to discharge home. In some cases, this does not prepare parents and carers for crisis or emergency situations that might arise. That’s why the WellChild Better at Home Training Suites are such an important resource for families of children with complex needs.
In future families like Leanne’s will benefit from having some of this training in the Better at Home suite. Leanne and Craig Cooper and their daughter Sophie who is now aged 16 are already benefiting from the support WellChild is providing though our nurses Sophie has a complex range of conditions including Cerebral Palsy, Dystonia, Epilepsy, Scoliosis, Chronic Lung Disease and Gut Motility Disorder. She has a tracheostomy and is ventilated.
The family has had great support from Nottingham based WellChild Nurse Rachel Gregory over the years helping them get Sophie home from hospital and reducing the number of times she has to be admitted to hospital. The training they have received has been an important part of their journey.
Leanne said: “We had several months of adapting to our new life with Sophie’s tracheostomy care, including training new carers at home, but Rachel helped us navigate this new norm by teaching us and helping us with things such as care plans. One of the many brilliant things about having a WellChild nurse is they understand the importance of having families together at home and they understand the complexities of caring for a child with significant health care needs and they empathise with the impact that has on parents and siblings. They get it!"
Rachel Boardman, Divisional Nurse Family Health, Nottingham Children’s Hospital said: “This exciting project is an excellent example of collaborative working between Nottingham Children’s Hospital (NCH), University of Nottingham and WellChild. The suite, which is one of only ten in the UK, provides a designated safe space for training parents, families, and future healthcare professionals to deliver the clinical skills required to care for seriously ill children and young people at home. A significant number of Children, Young people and their families and carers will benefit from this innovation and NCH is immensely proud to have been part of this important project.”
Professor Joanne S Lymn, Dean and Head of the School of Health Sciences at the University of Nottingham said: “This project is an excellent example of collaborative working between the University of Nottingham, Nottingham Children’s Hospital (NCH) and WellChild. The suite, which is one of only ten in the UK, provides a designated safe space for training parents, families, and future healthcare professionals to deliver the clinical skills required to care for seriously ill children and young people at home. The School of Health Sciences is very proud to have been part of this important project.”
Matt James, Interim Chief Executive of WellChild said: “It is great to be able to expand our services to children and families in Nottingham.
“WellChild now has eight Better at Home Services across the UK and this year will see the opening of another two. Every training suite that WellChild can provide will help families like Sophie’s to care with confidence and learn the vital skills needed to keep their children safe at home. A huge thank you to The Wolfson Foundation and the Hospital Saturday Fund, who are funding this project. This funding is a huge boost. By expanding this vital programme to new parts of the UK, we can give more parents and carers the skills and confidence to care for their children safely at home, where they will have the very best chance to thrive.”
WellChild provides essential and practical support to ensure that the increasing number of seriously ill children and young people in the UK have the best chance to thrive - properly supported at home with their families.
The charity, which has The Duke of Sussex as its Patron, provides a national network of children’s nurses, who work with families to ensure that children with complex care needs can leave hospital and return home and, through its Helping Hands scheme, WellChild enlists the support of volunteers to tackle practical projects in the homes of children with serious health needs. Through its family training and support services, the charity ensures parents and carers are properly supported and empowered to care for their children safely at home.
During Covid-19, WellChild set up a crisis response service to source and distribute Personal Protective Equipment (PPE) to shielding families so that they could let external carers back into their home. The charity has now distributed more than 270,000 items of PPE to vulnerable families across the country since the crisis began.