Driven by a UK Strategy for Kawasaki Disease
Across the UK, many hundreds of children are affected by Kawasaki Disease every day. Some are growing up with acquired heart disease, likely to be an ever-present challenge which they will have to face. Others will be receiving a diagnosis today. Perhaps a timely diagnosis. Perhaps not.
Unlike many medical conditions of significance, no UK strategy has been in place for improving the outcome of Kawasaki Disease. At Societi, we saw this as an opportunity to collaboratively develop a UK Strategy. Our Strategy has set out the issues, focuses on the key outcomes sought, assigns responsibilities for investment and action, next steps and identifies the resources required to get us to where we need to be. We didn’t prepare our strategy alone! We worked with our Scientific Advisory Board who identified the priority areas and it has since been adopted by the UK Kawasaki Disease Steering Group.
We know that we must act – now – to address Kawasaki Disease, it is the leading cause of acquired heart disease in children in the UK. Having undertaken a review of the current environment around Kawasaki Disease, our UK Strategy recognises the four parallel areas which must be progressed as part of an integrated, proactive response to the immediate needs identified. Recognising the cumulative inaction over time, the increasing incidence being evidenced by recent research and the significant long term threats which can be posed by Kawasaki Disease, we must now implement our strategy as a priority, with pace and through strong partnerships.
Our 2016 – 2019 UK Strategy period is coming to an end and we are in the process of renewing our proposals for the next three year period. Our Trustees have agreed that we will remain focused on our four organisational aims (below) and we plan to launch our revised strategy by the end of 2019. Please contact us if you’d like to know more – or if you want to get involved.
Our Organisational Aims
Societi has four strategic aims:
1. Awareness raising
We will raise awareness of Kawasaki Disease to improve prompt diagnosis – through campaigns making full use of social media and working with key partners. We will reach GPs, paediatric clinicians, health professionals, parents and carers. This is our primary aim.
2. Clinical research
We will identify funds and lever efforts building on enhanced awareness of need, to undertake and urgently advance critical research to understand, diagnose and manage Kawasaki Disease
3. Clinical supervision
Gaps exist in current provision for Kawasaki Disease children in their long term care. We will work to close these gaps, as well as connect long term care to long term research.
4. Support for the UK Support Group
We recognise KSSG as a lifeline when you’re at the centre of the “flat spin” that is a Kawasaki Disease diagnosis – so supporting and developing resources for KSSG – the UK support group which voluntarily supports families with understanding, advice and compassion – this is our fourth important aim.
Delivering the Strategy – Priority, Pace, Partnership
Driving forward implementation of our strategy across all four of our strategic aims means we must work to find influential supportive partners and enable Kawasaki Disease to be identified as a priority by funders and policy makers. Individual components of the strategy are critical, but dynamic implementation of our comprehensive, integrated approach is now urgently needed.
Every year, hundreds of children are treated for Kawasaki Disease. Of these, 28% develop some heart complications whilst others face different, serious complications. A shocking 39% of infants affected (babies under 1 year) develop coronary artery aneurysms and 19% of children overall will have serious, lifelong heart damage. Not enough is known about the long term effects of Kawasaki Disease – the leading cause of acquired heart disease in children in the UK. No-one knows how many children are misdiagnosed, nor how many children who go untreated and who are silently affected by Kawasaki Disease. We have the knowledge to dramatically reduce acquired heart disease in children. We must now resource putting that knowledge in place and proactively prevent catastrophic, avoidable heart damage for a rapidly growing population of children and young people.
Our Organisational Values
Societi was created to bring a co-ordinated approach to tackling Kawasaki Disease. We recognise that across the UK we have specific challenges, a particular presentation of the disease which needs a bespoke response and most of all, we need much greater levels of awareness of Kawasaki Disease, starting with the UK medical community.
Our ambitious strategy identifies and proposes a response to our priority actions. We aim to permanently and positively change the environment around Kawasaki Disease for our children. We know we need to act together with partners in order to achieve our strategy. Our organisational values shape how we will deliver the needed transformations which we have set out in our UK Strategy 2016-2019.
We will work with others to enable them to recognise Kawasaki Disease as a priority for action and investment
We will act quickly, we will not be hindered and we will act with a momentum that comes from our motivation to succeed
We know we cannot deliver our strategy alone. We will forge strong and lasting, powerful partnerships with organisations and agencies who share our determination to transform the environment around Kawasaki Disease in the UK, and beyond.