Improving the Syncope pathway from a Patient Perspective
Daniel Beach Board Member STARS US and Member STARS Medical Advisory Committee spoke at today's Syncope conference on behalf of Trudie Lobban MBE Founder and CEO of STARS - Syncope Trust And Reflex anoxic Seizures with a presentation on:
• learning from the patient perspective
• the challenge of accurate diagnosis
• raising public awareness of syncope
• improving the patient experience: learning from STARS
In his presentation Daniel made the following comments;
"Misdiagnosis is the most common thing patients are facing
There is a lack of awareness & understanding of what Syncope is for patients and carers
By the time the patients gets to the diagnosis they are at the end of there tether from being given the wrong referrals and being passed from pillar to post
Patients needs to understand what it is that is happening to them, they need information to feel secure in there diagnosis
Tens of thousands of patients churning in the healthcare system not properly diagnosed
Thousands treated with no support mechanism
Syncope is poorly understood and often dismissed as trivial
There is a lack of awareness of syncope by A&E
It should be recognised by medical professionals that syncope is a debilitating condition that should be addressed and not dismissed
The barriers for syncope are numerous and the list has not changed in well over a decade
Raising public awareness of Syncope is key – Stars aims to ensure that anyone with unexplained loss of consciousness receives timely and accurate diagnoses, effective treatment, support and signposting to an appropriate medical professionals
Empowering patients with the STARS Blackout checklist
Improving diagnosis is key and there is a whole raft of tools to use to diagnoses and support patients
Blackout clinics provide a benefit to patients:
- Clear Referral
- Thorough and appropriate investigations
- One point of access
What can we do to improve the patient journey?
- Improved understanding
- Greater awareness
- Information and empowerment
- Support and reassurance
- A multidisciplinary approach to investigation of T-LoC
The full presentation is available for download at the end of this page.
About Trudie Lobban MBE and STARS
Trudie Lobban, Founder and CEO, established the charity in March 1993 as a result of her daughter, Francesca, being diagnosed with RAS and realising that there was no support available. Since then STARS has grown into a UK registered charity, providing information and guidance for adults and children experiencing unexplained loss of consciousness.
2008 saw one of the great success stories for the STARS charity, with the launch of 'The Blackouts Checklist'. Designed to help patients and medical professionals work together to reach an accurate diagnosis in the event of loss of consciousness. It was prepared with the guidance of the Medical Advisory Committee. Patients 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. The checklist has proved the most sought-after material that we offer at STARS providing information that is needed by both medical professionals and patients. The checklist is now so popular that consultants are now asking GPs to complete one prior to referral.
In 2009 STARS announced their campaign ‘Syncope and Falls in the Elderly’ (SaFE) The aim of the project was to promote accurate diagnosis of syncope in the elderly and to educate the elderly population, carers, care workers in the link between falls and syncope. This initiative is very much ongoing in 2011 with visits to nursing homes and presentations at national conferences.
Also in 2009, STARS Founder and CEO, Trudie Lobban was made a Member of the British Empire (MBE) in recognition of her work for STARS and services to healthcare.
In 2010, STARS produced their updated BMA award-winning Blackout Checklist and, in response to a request from STARS MAC, the NICE Transient Loss of Consciousness (TLoC) Guidelines were launched. The Guidelines will improve the diagnosis and management of blackouts in the UK.
During 2010, STARS supported the development of a Rapid Access TLoC website, www.starsloc.org. It is designed for medical professionals to support the set up and management of RATLoCs across the UK.
In 2011 the STARS International website, www.stars-international.org was established. STARS now provides information and patient resources for Denmark, France, the Netherlands, Italy, Japan, Poland, Spain and Sweden.
In 2011, Trudie played a major part in the launch of a national public awareness campaign in the United States of America. Take Fainting To Heart educates Americans about the important link between fainting and heart health. STARS featured in every interview held on 13 television and six radio channels, with Trudie highlighting the organisation as an important resource.
STARS is regularly represented regionally, nationally and internationally at medical and patient/carer meetings, including the American Autonomic Society, European Society of Cardiology Syncope Taskforce, Heart Rhythm UK/BPEG, CHD Collaborative, International Association of Patient Organisations (IAPO), the All Party Medical Group on Devices, the Labour Party Conference Health Forum, Patient Link Programme and European Federation Neurological Society, and the UK Heart Rhythm Congress.
The STARS CEO sits on a number of medical boards and steering groups in addition to being a council member of committees and advisory boards.
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 doctor.
STARS is now recognised as the leading international resource for support and information for both patients and professionals on syncope, RAS and postural tachycardia syndrome. The Founder and CEO, Trudie Lobban MBE FRCP Edin is recognised as a world expert, representing patients and carers, as well as working closely with all those involved in the care and treatment of people affected by syncope and reflex anoxic seizures.