Societi Foundation Achievements (to date..!)
In less than 5 years since our charity was established, Societi Foundation has made huge inroads to changing the landscape surrounding Kawasaki Disease. The list of projects below is just a sample of our BIG ACHIEVEMENTS – we have so many! And although much more still needs to be done, work since our establishment has brought about real change – raising the profile of Kawasaki Disease and awareness throughout the UK.
It is well worth mentioning here too that the majority of our work is funded by Team Societi – that’s YOU…. – our incredible fundraisers, donors, volunteers and supporters. To have achieved what we have, in such a short space of time, and with no Government funding and little grant support – we’re REALLY PROUD, and grateful to #TeamSocieti for allowing us to continue our very important work.
At a glance you can see below just how busy we have been, select each one of our projects listed here to read more:
UK Steering Group for Kawasaki Disease
Societi Foundation established, chairs and leads the work of the UK Steering Group for Kawasaki Disease – which has bought leading UK Kawasaki Disease experts together, linking centres like UH Bristol, Great Ormond Street and St Mary’s London as well as the involvement of others including the National Clinical Director for Heart Disease and the National Clinical Director for Children, Young People and Transition and The British Heart Foundation CEO.
Scientific Advisory Board (SAB)
Kawasaki Disease has many effects on a child and as such a multi-disciplinary approach to research/care is needed for this disease. Societi recruited and is supported by the Scientific Advisory Board – a group of seven Kawasaki Disease experts from across the UK, ensuring access to clinical expertise needed in our work.
Societi is supported by the phenomenal clinical expertise of:
Associate Professor Despina Eleftheriou; Paediatric Rheumatologist, Great Ormond Street Hospital and Institute of Child Health
Prof Paul Brogan; Professor of Vasculitis and Honorary Consultant Paediatric Rheumatologist, Great Ormond Street Hospital
Prof Michael Levin; Professor of Paediatrics & International Child Health, Imperial College London
Dr Tom Johnson; Consultant Cardiologist, Bristol Heart Institute
Dr Damian Roland; Consultant and Honorary Associate Professor in Paediatric Emergency Medicine, University Hospitals, Leicester
Dr Owen Miller; Consultant in Paediatric and Fetal Cardiology, Clinical Director, Congenital Heart Network, Evelina London Children’s Hospital
Dr Filip Kucera; Paediatric Cardiologist, Great Ormond Street Hospital
Kawasaki Disease Clinician / Hospital Information Packs
So far over 1,000 information packs have been distributed to GP Practices and Hospitals across the UK – these include RCPCH endorsed information, guidance and resources aimed specifically at clinicians and growing knowledge of Kawasaki Disease.
Kawasaki Disease E-Learning Module
Societi partnered with RCGP to fund and develop a Kawasaki Disease E-Learning Module – designed to raise awareness and build knowledge amongst GPs. The module is now available to over 100,000 UK healthcare professionals and is being actively marketed by Societi and RCGP.
“Fever under 5’s” Committee of the National Institute for Health and Care Excellence (NICE)
Societi founder, Rachael, was appointed to the “Fever under 5’s” Committee of NICE. The work of the national committee was to review and consider updates to clinical guidelines for fever in the under 5’s. NICE describe the purpose of the new guideline as “designed to assist healthcare professionals in the initial assessment and immediate treatment of young children with fever presenting to primary or secondary care.”
NHS Choices website / Kawasaki Disease
Societi Foundation worked closely with NHS England and NHS Choices, guided by Societi Trustee and Kawasaki Disease expert, Professor Tulloh, to comprehensively update the information on the NHS Choices website about Kawasaki Disease. A ‘go-to’ resource for health information, Societi had the full support of the team at NHS Choices as we worked together to jointly create fully updated online content for Kawasaki Disease.
Societi undertook a Freedom of Information request relating to Kawasaki Disease in 2016 and in 2019. In 2016, essential data was captured regarding Kawasaki Disease incidence in England spanning 10 years, between 2006 and 2015. Building on this research, Societi repeated the Freedom of Information request in 2019 contacting Trusts and Health Boards throughout the whole of the UK, requesting information spanning from 2006 until 2018. The resulting database of Kawasaki Disease information is at an unprecedented scale and is a powerful tool to help shape and inform our work around Kawasaki Disease. Analysis of the research findings into the incidence of Kawasaki Disease is currently ongoing.
European Kawasaki Disease Coronary Artery Aneurysm Prevention (KDCAAP) clinical trial
Societi catalysed and advanced the development of a clinical trial to research better acute treatments for Kawasaki Disease. Societi is a partner in the trial team and we’ll be involved throughout, leading the work with families and creating patient information and clinical awareness resources.
Together with leading UK experts and with input from the BPSU, Societi created a Clinicians Webinar, run by RCPCH to highlight how out-dated information about Kawasaki Disease is hampering best practice for affected children. The webinar also presented recent research findings on incidence (UK&I) – including revealing data on lifetime heart damage caused – the webinar is currently RCPCH’s most popular webinar.
Working with Paediatric Care Online (PCO)
Societi worked with PCO staff from the RCPCH to include Kawasaki Disease in a host of the “Key Practice Points” (doctor information pages) on their app – an online resource available to over 18,000 members of RCPCH. Societi also later worked with the PCO team to publish updated pages including one on “Pyrexia of unknown origin” – or fever of unknown cause, now highlighting information on Kawasaki Disease. Societi information and resources are also available to clinicians through the PCO website.
Societi works with policymakers, politicians and wider stakeholders. We have been directly in touch with the offices of dozens of MPs holding meetings and discussions. Societi attended Westminster where we spoke about the need for a patient registry, the increasing incidence of Kawasaki Disease and the serious damage it causes and the legacy it leaves for far too many children. Through our connections we’ve raised MP’s questions and talked about the need for awareness – and the need for investment to support UK led research and UK knowledge building across our medical community.
UK Lifetime Cardiac Management Paper
Societi coordinated an expert writing group to produce much needed new UK lifetime cardiac management guidance for those who have been affected by Kawasaki Disease. The group consulted widely and included experts in Kawasaki Disease, paediatric cardiology and adult cardiology from across the UK and USA. The guidance – Lifetime cardiovascular management of patients with previous Kawasaki Disease paper sets out in detail the lifetime clinical care needs of those who suffer lasting heart damage and has been published by Heart BMJ. Societi Trustee, Professor Robert Tulloh gave an interview for a downloadable podcast with the BMJ Heart Journal to give an overview of the paper. You can view the paper here.
Patient Safety Alert (PSA)
Societi contributed directly to the content of, and distribution of, a PSA issued to all NHS Trusts in England. The PSA required action by all providers of NHS funded care to assess and act on risks re failure to recognise acute coronary syndrome in Kawasaki Disease patients.
International Kawasaki Disease Awareness Day
Societi has taken the UK lead in the International Kawasaki Disease Awareness Day Campaign every year since establishment. In 2020, our social media campaigns reached over 100,000 people with an international reach too from as away as Australia, USA, Philippines, Italy, Germany, India, Canada, Mexico, Singapore, Norway, France & New Zealand! You can download and read our most recent Impact Statement here.
Ongoing Public Awareness Campaign
Societi Foundation leads an ongoing, multi-channel public awareness campaign which to date has engaged upwards of 3,000,000 people.
Attendance at the annual RCPCH Conference
Each year, Societi attends the RCPCH Conference to engage with thousands of interested clinicians – sharing Kawasaki Disease information. Societi has also displayed technical posters and run a training workshop at the conference in partnership with BPSU at the conference.
s well as a dedicated section on our website, Societi has developed a range of key documents designed to inform funders and policy makers of the issues surrounding Kawasaki Disease. Documents include awareness raising posters, leaflets, our National Strategy, infographics, partnership proposals, newsletters, impact statements and so much more.
Societi’s Award Winning Family Portal
A BMA award winning Family Resource Portal also sits within our website – it has been developed to provide families with much-needed up to date, accurate information and supportive resources. The portal includes Societi commissioned family story films, advice videos featuring UK leading Kawasaki Disease expert and Societi Trustee Professor Robert Tulloh, a parent guide, a ‘typical’ Kawasaki Disease journey and much, much more.
Societi Social Media
We deliver targeted social media campaigns including working increasingly internationally with sister organisations around key events (such as World Heart Day) on Facebook, Instagram, Twitter, YouTube and more – reaching hundreds of thousands of individuals.
A network of over 2000 volunteer fundraisers and awareness raisers across the UK are regularly working to raise awareness of Kawasaki Disease in their local communities. Societi Foundation works to support these volunteers by providing information and accurate awareness raising resources.
Were so proud of brilliant partnerships formed with remarkable organisations helping us to get Kawasaki Disease known – including British Heart Foundation, World Heart Federation, Public Health England, RCPCH, BPSU, RCGP, NHS England, GOSH & NICE.