SERIOUSLY ill children and their families in South West London will be getting vital help as their parents receive training to care for them at home at a new Better at Home Training Suite, supported by a WellChild Nurse.
The Suite will be the first of its kind in London, is funded by WellChild, the national charity for seriously ill children, and is situated at St George’s University Hospitals NHS Foundation Trust. The project was made possible by a grant from the Sir Jules Thorn Charitable Trust.
WellChild has also funded Charlie Perth, WellChild Long Term Ventilation and Better at Home Clinical Nurse Specialist to work alongside Alex McClements the current WellChild LTV nurse specialist to develop this training facility.
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 using simulation equipment. They also provide the opportunity to train extended family members to widen the support network for families. 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 evidence-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 a crisis or an emergency that might arise, and the delivery of the training can be inconsistent, limited and delivered by more than one professional. This can prolong discharge from hospital settings. That’s why Parent Trainers like Charlie and the WellChild Better at Home Training Suites are such an important resource for families with children with complex needs.
Charlie Perth has been a qualified nurse for almost nine years. Starting out with a BSc in Adult Nursing, her clinical experience is based in the acute medical unit and then intensive care, working in both district general hospitals and tertiary centres.
After undertaking a secondment in paediatrics, she developed a passion for supporting children with complex medical needs and their families and undertook a PG(Dip) in Children’s Nursing. After that, she completed the PCCS Specialist Paediatric Critical Care Course and worked as a Sister in Children’s Critical Care.
“Being a WellChild nurse to me means listening, supporting and engaging families and children with Long Term Ventilation needs. My role gives me the ability to help transition a child and their family from hospital to the community. The Better at Home suite here at St George’s provides a supportive and safe environment for parents and carers to gain the invaluable specialised skills required to care for their child at home.
“I enjoy this dynamic role, working clinically with children that require long term ventilation in acute areas, facilitating training for parents and carers in the Better at Home suite and seeing patients in clinic. It is an immense privilege to be able to support these families and navigate the challenges faced by having a child who requires Long Term Ventilation and I’m proud to call myself a WellChild nurse.”
One child who is already benefitting from the extended support WellChild has enabled is Dexter Adu. Dexter was born very premature at 23 weeks and has severe chronic lung disease, he needs oxygen during the day and is on ventilation at night with a BiPAP machine, a mask that is worn over the face to provide positive air pressure into his lungs.
He was in hospital for nine months following his birth. Dexter was given steroids to help his lungs grow stronger, and even had PDA surgery to close an open vessel in his heart. His situation improved a little after surgery but not enough to come off the oxygen. The team supporting him introduced the family to the Long Term Ventilation team to start conversations about Dexter being put onto a form of ventilation.
WellChild Nurse, Charlie was a member of the Long Term Ventilation team and she spent lots of time talking to the family about what being ventilated would mean for Dexter. They say she was really patient and talked through his plan, explaining everything in plain English and helping them fully understand what might happen next. When it was agreed for Dexter to have non-invasive ventilation using a BiPAP machine, they knew what to expect and had Charlie with them to support them throughout.
When he had improved to the point he was going to be coming home soon, Charlie started to prepare the family for what life at home would be like. They needed training on how to use the equipment he needed. There was a lot to learn as this was all very new to them. Charlie organised for the family to use the WellChild Better at Home Suite which Dexter’s mum Holly Charles describes as amazing.
“It’s set up like a child’s bedroom with a cot and everything so we could see first-hand what it would be like when we go home, how much space the equipment took up but most of all it allowed us to role-play and practice lots of different scenarios so when we went home we were very well prepared. It was such a great place to learn as it can be difficult when on the ward surrounded by other parents, you always feel like they are watching. Having the privacy of the suite meant we could relax and really focus on learning the skills we needed. Charlie was with us, and we were able to ask questions there and then and keep going over and over everything until we were confident and competent. We were the first parents to use the suite, it had all this shiny new equipment, we were able to use it every day for several weeks – it was great!
“During all this time Charlie our WellChild Nurse was there to help with anything and everything, she made sure she always had the time to sit with us and talk through our questions and concerns. We had a WhatsApp group we could contact her on and she was there to help. She did everything she could to take the pressure off us as a family so we could focus on our training and Dexter. She even organised our discharge and for all our equipment to be sent to our home ready for Dexter.”
“Our world changed completely when Dexter was born and the support of our WellChild Nurse and the team of professionals at the hospital who worked with Dexter has made life that bit easier. It’s incredible to be able to contact someone and know that whatever you ask she will be supportive, and you feel comfortable asking questions no matter how silly they may be. We really appreciate all her support and know that without it well, we just wouldn’t be here home with Dexter now. Even now we are home she continues to support us and ensure Dexter stays well at home. Her support and kindness are outstanding and genuine which is so important. I just can’t put into words how much Charlie’s support has meant to us, she’s, our superstar.
“Now we are home, despite some recent trips back to hospital with a virus, Dexter is really thriving. He’s just amazing and the happiest little boy. He doesn’t ever seem to cry and just wants to play and smile all the time. He’s developing well and manages to play and move even attached to all his equipment.”
Richard Chavasse, Consultant Respiratory Paediatrician at St George’s Trust said:
“The thought of having to look after your child on breathing support at home is daunting for any parent, particularly after a difficult hospital stay. The Better At Home training suite will be an excellent addition to our services to help us prepare parents for this journey.
“Thank you to WellChild for funding this suite and our two clinical nurse specialists, Charlie and Alex to provide this holistic support. It is amazing to be the first centre in London to have this facility.”
WellChild Chief Executive Colin Dyer said:
“Charlie has been a fantastic addition to the WellChild Nurse Network, it is great to be able to expand our services to children and families in London. Having a dedicated nurse to support families living with Long Term Ventilation is vital to ensure their child thrives at home.
“WellChild now has seven Better at Home training projects across the UK and this year will see the opening of another three. The pandemic has been a very difficult time for everyone, but for these very vulnerable children and their families, it has been catastrophic. Every Nurse and every training suite that WellChild can provide will help families like Dexter’s.
“A huge thank you to Sir Jules Thorn Charitable Trust who are fully funding this project as part of a wonderful £350,000 investment in WellChild’s nationwide Better At Home Programme. 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.”
Richard Benson, the Director of The Sir Jules Thorn Charitable Trust said:
“The Trust is delighted to support WellChild’s Better at Home Programme. Better At Home meets a huge unmet need and the training suite at St George’s has the potential to deliver transformational, practical support for families in London.”