In 2014, nursing teams in NHS Lothian and CHAS set out to address the lack of home-based end of life nursing care available to families whose children were dying. They aimed to create a service that would allow families to choose to have end of life care in their home; safe in the knowledge that they'd have access to specialist nursing support 24/7. They called this service Care24.
We spoke to Sue Hogg, Director of Children and Families at CHAS and Julie McGill, Clinical Nurse Manager at NHS Lothian about this unique partnership and family-led model of care.
Sue said, "We knew that many of these children were dying in hospital or in a CHAS hospice because it wasn't easy to put the care in place to support families to be at home. Julie and I started to talk. We both had teams with the expertise and willingness to help.
Could we do something that might make a difference to these families?
"We got everyone together and started to imagine what it could look like if we pooled our collective resources around making it possible for families to be at home, if they wanted to be, and for their child to die at home. We met monthly, teasing out what was possible, what the essential things were to put care in place safely, and built up a framework for a nurse-led service that enabled families in Lothian to make a choice to be at home for end of life care.
"It is different for every family - but the key components are anticipatory care planning and, the involvement of a range of key people. For example, that could be the GP, Hospital Consultant or, a CHAS doctor who help the nursing teams with making sure there are excellent plans in place to make sure care is well planned, and families can focus on making the very most of the precious time with their child. Communication is everything."
The team has been delivering this care since 2015 and, in order to evaluate the success of the service and generate evidence to support future improvements, Sue and Julie commissioned Edinburgh Napier University and Edge Hill University to undertake a service evaluation.
At the very first steering group for the evaluation, a parent said: "if this service had been in place when my daughter died, I would have chosen to be at home."
Key findings from the report demonstrated that the service has met all of its intended outcomes:
Julie said: "Given the amount of planning required for each child, the biggest difficulty is the ability to deliver the Care24 service alongside day-to-day services. Most referrals can be received at short notice requiring a high level of skill in both the planning, and flexibility from the staff, as work patterns may require change at such short notice. The existing core team is small, and the ability to manage more than one referral at a time has been extremely demanding for all services involved. Due to these issues, the sustainability of the service is very challenging but recognising this is the first step to ensure we can continue to evolve our model of care.
"The effectiveness of the service has overall been positive. We have received extremely reassuring feedback from parents directly and also from their clinicians and GP's. "I would say that the most valuable aspect of Care24 is that we give the families choice; a choice that didn't exist before. At any time that choice can change, and that's absolutely okay. The families we have supported have shared that they have found the care and support we have provided invaluable. They've highlight that they, and their child, were at the centre of the planning process and that they felt supported and empowered to care for their child in the little time that they had left. We provide the opportunity for the whole family to be involved and we deliver the required care in a place where the child feels most comfortable and safe."
Sue said: "We are so delighted with the report - it underlined our sense that this was a service valued by families and it met its intended outcomes. However, we do know that this is a really complex service to get right, and our small pilot has been hard work behind the scenes. This type of care is resource intensive."
Provision of end-of-life care in the preferred setting of the family is a priority for so many and, it's services like Care24 that are so crucial to ensuring the end-of-life care needs and wishes of families are met. With a continued close, working partnership between CHAS and NHS Lothian, much of the suggested areas for improvement are already being tackled but there is still work to be done.
"This is something that we're always grateful for really. The help, support, compassion, the friendly staff and, the knowledge that they have. They know how to speak with you, they know how to look after [Child], you know, they know in advance what you need, they really think ahead. To be able to have help and support for your child because you are totally broken and lost and, having such people around you who are looking after everything, is such a relief because you can just spend the precious time with your child." (Family who have used the service).
No family wants to hear that their child might have a condition that they could die from. It's unimaginable. But CHAS, and our colleagues in the NHS, are only too aware of the awful reality that is: every week in Scotland there are families facing that devastating experience.