Linda Gregson explains how one young man helped transform the way a critical care unit works with patients and families
I’d like to start by asking you a question. Imagine one day a family is placed in your care who know much more than you do about their health and treatment needs.
How would this make you feel?
I faced exactly this scenario when I met Mitchell and his family in 2013. Mitchell was a young man from an extremely loving family. He enjoyed music, loved being outdoors, was popular, engaging, and an avid rugby fan. Mitchell arrived in the critical care unit with his own team of carers, his own ventilator, and a mum who understood Mitchell’s needs far better than I or the team ever could.
Despite the initial challenges this presented, the journey that followed with his family has changed the way we work on our unit for good.
Mitchell was one of the first people in the country to receive a personal health budget to manage his care. Born with a complex neuro-disability, he had a range of health needs.
From the age of 15 he was ventilated at night, and at 21 this became 24 hours a day. Mitchell’s mum Jo had worked extremely hard to ensure Mitchell’s care was personalised, flexible, and allowed him to remain at home. Through a personal health budget they had managed to make this ambition a reality.
As Mitchell moved to adult services, a move that would bring Mitchell into our care, Jo understandably had a number of worries.
What would happen when things got tough? Would they still be able to support Mitchell at home? Who would end up treating Mitchell if he ended up at A&E on a Saturday night?
“We worked together to share knowledge, overcome boundaries and fears, and form a trusting relationship”
Fortunately, Jo’s fears remained unfounded.
The evidence presented to us was clear, and Jo’s thorough understanding as a mother - from what Mitchell liked to what he was communicating and his health needs - became an indispensable part of how we supported Mitchell in a safe and effective way. In essence, Jo became part of the medical team.
As a team, we worked together to share knowledge, overcome boundaries and fears, and form a trusting relationship.
We taught Jo and the team of carers about manual ventilation and gave advice to his carers.
Jo shared her knowledge of the complexity and history of Mitchell’s condition, the capability of the carers, the equipment they used at home, and how to understand Mitchell’s body language and facial expressions. We learnt very early on that Jo would only bring Mitchell into hospital or ask for advice when the team and the family had exhausted all the other options and this helped us to respond appropriately.
Together, we created a management plan with Mitchell’s paediatrician and his family.
”Jo shared her knowledge of the complexity and history of Mitchell’s condition”
This clearly outlined roles and responsibilities for Mitchell’s care, and enabled the family to share the ‘must-do’s’ for Mitchell, things like keeping him cool when he felt distressed. The plan was a living document, and helped us put lines in the sand around Mitchell’s care, including initial considerations for end of life care.
Over the months that followed, we had further conversations as a team about Mitchell’s end of life plan. We discussed the possibilities, and accepted that there may be elements out of our control.
On the day that Mitchell died, one year ago this month, his family cared for him throughout - from washing to changing and tracheostomy care.
As medical staff we knew what mattered to Jo and following his death they looked after Mitchell at home for a week until his funeral. Jo has since made it clear that at no point did she feel that Mitchell was being taken away from her, and that, for us and for her, was what really mattered.
”Jo has since made it clear that at no point did she feel that Mitchell was being taken away from her”
Working with Mitchell and his family was the catalyst for a series of changes in how my team now operates. We are much more able to share some of our specialist knowledge, where this supports carers and managing care at home, and we consistently work much more collaboratively with families and carers; so much so that it’s almost become a requirement of working here.
“We consistently work much more collaboratively with families and carers”
If I think back to that initial question I asked at the start of this article, my answer looks very different these days.
How do I feel now when families are referred to me who know more than I do, and want to take a lead in their own care?
I feel energised, confident, and ready to embark on a journey with them which is both collaborative and personalised, just like my team did with Mitchell and Jo.
Linda Gregson is the Senior Sister on the critical care unit at Blackburn Hospital