In her final blog update, Helena shares her time with the teams in Toronto and her final reflections. To follow along with her earlier blogs head to:
Complex Care for Kids Ontario (CCKO) is a provincial strategy to improve access across Ontario to integrated medical care and coordination for children with medical complexity (CMC) and their families. CCKO operates with a ‘hub-and-spoke’ model where the “hubs” serve as the regional lead sites and “spokes” are the community-based clinics. The regional lead sites are responsible for running paediatric ambulatory complex care clinics in tertiary hospitals, and capacity building in the community through developing and sustaining community-based complex care clinics in Ontario. There are four CCKO regional lead sites across the province, in Ottawa (Children’s Hospital of Eastern Ontario CHEO), the Children’s Hospital in London, McMaster Children’s Hospital in Hamilton and SickKids in Toronto.
I had the pleasure of spending a few days with the team in Toronto led by Joanna Soscia (Nurse Practitioner and Clinical Practice Lead), Dr Julia Orkin as Medical Director and Kate Langrish as the Clinical Director. There is a strong relationship with the University of Toronto particularly Dr Eyal Cohen, who founded the complex care programme at SickKids. Today, the programme is led by 12 Nurse practitioners, but is multi-professional with social workers, pharmacists, dietitians, clinical nurse specialists, occupational therapists, physiotherapists, program coordinators and paediatricians.
There are approximately 650 families on the programme in Toronto, 200 are managed from the SickKids hospital (the hub) and the remining 400 within the 11 established satellite clinics (the community spokes of the programme).
Why was I interested in learning more about this initiative? Children with medical complexity are often associated with increased resource utilisation, they have frequent admissions to hospitals, have multiple health needs dependent on technology, medication regimes, and usually have a number of complex chronic conditions. Most importantly their families need high levels of support and good integrated, coordinated care. I wanted to understand the intersection between this group of children and those who were considered ‘palliative’, how the programme identified and defined the population of children to manage and also compare their integrated model to the Kentown programme in the North West of England.
During my time with the team I was able to sit in on two multidisciplinary meetings regarding two children with high level of health and social care complexity, a grand virtual round, a MDT discussion about streamlining the clinic to cope with the nine month waiting list and a risk management discussion regarding the ongoing management of a child and family.
Listening into all of these discussions highlighted to me the complexity surrounding many components of these children’s care. SickKids have an excellent standard operational definition to help identify the children they manage and I am hoping that the insights I gained can be incorporated within the work that Together for Short Lives are currently developing regrading identifying those children across the UK who may benefit from a palliative care approach.
As my time in Toronto drew to a close I had to fit in one final visit to Niagara Falls. It was the coldest day of that week in Ontario and despite being a bit wet and cold, it was not to be missed. The power of the water was incredible!
Having spent nearly three weeks now working with teams in the two provinces of British Columbia and Toronto I can honestly say I feel quite saturated with information. Whilst it has been a privilege and a pleasure to meet so many people, individuals and teams I am absolutely exhausted but also exhilarated and excited to pull together the information that I have learnt to work with Together for Short Lives, influence knowledge exchange across the UK, but most importantly to have an impact on the care of children and families in the UK with palliative and end of life care needs.
Having an opportunity to share, collaborate, build connections and learn from other professionals is something to be valued. I have witnessed some excellent examples of interdisciplinary working, innovation, strategic planning and genuine concern for children with seriously ill conditions and their families. Thank you to The Churchill Fellowship for the opportunity and Together for Short Lives for supporting me in my adventures. I have had an amazing three weeks but I will be very glad to get home and I look forward to phase two – two weeks in Australia in October 2024, let the planning commence!
