STARS (Syncope Trust And Reflex anoxic Seizures), The Blackouts Trust, was founded by Trudie Lobban in March 1993. The information and support group was established at the request of a paediatric neurologist after Trudie’s daughter was diagnosed as having Reflex Anoxic Seizures (RAS) - a form of syncope.
Since then STARS has undergone rapid expansion and the support and information group that was originally established is now an international charitable organisation offering information and support to anyone affected by unexplained loss of consciousness, blackouts, transient loss of consciousness, and syncope. The overall aim of the charity is to ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional. It is hoped that greater public and professional awareness will aid early and correct diagnosis of the condition and allow people to lead a more normal life.
In 2004, STARS formed an alliance with other charitable organisations with a common interest in arrhythmias for the first Arrhythmia Awareness Week in 2004. AAAW’s aim was to lobby for the writing of a new Chapter on Arrhythmias and Sudden Cardiac Death in the National Service Framework (NSF) for Coronary Heart Disease. Before lobbying began, the word ‘arrhythmia’ was only mentioned once in the NSF; there were no guidelines dictating diagnosis, treatment or care for those with heart disorders relating to the ‘electrics’ of the heart.
The awareness & lobbying campaign was a success and culminated in a reception in the Houses of Parliament to launch the new Chapter 8 on Arrhythmias and Sudden Cardiac Death. The Chapter was published in 2005.
In 2005, STARS became affiliated to Arrhythmia Alliance, The Heart Rhythm Charity, and works closely with it.
In 2007, one of the great success stories for the STARS charity was the launch of ‘The Blackouts Checklist’ which is designed to help patients and doctors reach the correct diagnosis in the event of blackouts – unexplained loss of consciousness – and to determine whether blackouts are ‘head’ or ‘heart’ related when presenting to primary care.
Sufferers are taken through a step-by-step checklist to help them prepare for a doctor or hospital appointment so that all parties can discuss openly and informatively the condition and what action should be taken next. Visit the Blackouts Checklist section of the website.
Syncope can affect people of all ages which is why STARS established an education programme for use in educational establishments from nursery to university. The aim of this project is to educate teachers, staff and carers on syncope and train them in condition management. ‘The Shine a Light on Education’ programme provides information and advice for parents and sufferers on how to cope with syncope in their learning environment.
The same year, after a tremendous growth in demand for support and information from sufferers in the United States, STARS US was established. STARS-US a non-profit organisation continues the extremely important mission of improving the quality of life for individuals and their families coping with syncope. They continue to educate and support sufferers, their families, the medical community and general public by offering a support system where by they can obtain knowledge and understanding of these conditions.
In 2008, following the success of the Education project concerned with young people, parents, teachers and staff at educational institutions, STARS began research concerned with older adults with syncope. The aim of Syncope and Falls in the Elderly project is to educate the elderly, their families, carers, care home workers and heath care professionals on the link between syncope and falls in the elderly. In doing this, the project will promote accurate diagnosis, treatment and improved quality of life for the elderly with syncope by championing the recognition of blackouts and related falls in older person.
2009 will see the launch of the Rapid Access Transient Loss of Consciousness Clinic website hosted by STARS. The website is designed to support the set up and management of a triage tool to assist the rapid and accurate diagnosis of patients suffering from unexplained periods of unconsciousness for medical professionals. STARS host of the Rapid Access Blackout / T-LOC Clinic website will help encourage the development of more Rapid Access Clinics in the UK and Europe to ensure swift and accurate diagnosis of patients as well as improving the burden on the healthcare system.