Australia: striving for action
[Part 4: Action; Ireland C & Panelli R]
SUDEP (Sudden Unexpected Death in Epilepsy) has been a focus for action in Australia for more than 20 years. However, we are still receiving calls and emails from families recently bereaved because of epilepsy, not only heartbroken by their loss, but also full of regret and amazement that they had never heard about this devastating phenomenon prior to it striking them. Despite the work that has been done internationally and locally, messages about the risk of death in epilepsy, risk assessment and management are not reaching those in Australia who most need to hear it.
Twenty years ago we knew very little about SUDEP. We worked to share what we knew, and to encourage research. Today, we still do not know the cause. However, we do have more understanding about the risk factors for SUDEP, and this information must be made available to people with epilepsy and to health professionals.
Every health professional needs to know that people with epilepsy carry an increased risk of death from a range of causes. They need to understand the risk factors and ensure that patients with epilepsy are well informed. People with epilepsy deserve to have the opportunity to assess their personal risk and to incorporate positive self-management strategies into their lives.
The slow progress of the campaign to tackle epilepsy deaths in Australia is partly a reflection of the low priority given to epilepsy in the Australian health care system. The relatively low prevalence of the condition means that governments do not recognise its significance. However, because people with epilepsy often die at a younger age, the years of potential life lost (YPLL) are actually greater than well-known and resourced conditions such as asthma. The lack of attention to epilepsy means that, at the primary care level, General Practitioners (GPs) do not receive up to date information on epilepsy. Without the active engagement of GPs and practice nurses in epilepsy care, people with the condition will lack the informed monitoring and support that could make a difference to their wellbeing and safety.
After 20 years of advocacy on the issue of epilepsy-related death we need fresh strategies to push the conversation forward into the public health arena. It would be prudent to draw inspiration and guidance from the UK where positive changes are apparent. In 2001 a national audit of epilepsy-related deaths highlighted the fact that many of these deaths may have been preventable. The report drew the attention of the UK Chief Medical Officer who commented that people with epilepsy ‘…are at triple jeopardy: they suffer social stigma because of their disease, understanding of the illness amongst health professionals is not high and the problem is not addressed by health services with the same commitment as is given to other chronic diseases like diabetes mellitus. ‘(DOH, 2001)
In the years following the national audit, clinical guidelines for the management of epilepsy were released by the Scottish Intercollegiate Guidelines Network in 2003 (SIGN #143, 2015) and the UK National Institute for Health and Care Excellence in 2004 (NICE GC137, 2012). Both guidelines noted the need for patient education regarding SUDEP. In General Practice, neurology was added to GP Training and epilepsy was included in the Quality Outcomes Framework – providing financial reimbursement for epilepsy monitoring by GPs. Most recently, research into risk factors for mortality has led to the creation of the SUDEP and Seizure Safety Checklist, to assist clinicians with risk assessment and communication - a related App has been released to support patient self-assessment of risk. The development team was awarded the 2016 BMJ Award for Neurology in recognition of this work to enhance safety for epilepsy patients. In addition the team also received the 2016 Health Service Journal Award for Education and Training in Patient Safety.
The catalyst and leader for many of the positive developments in epilepsy care in the UK over the last decade is SUDEP Action, an organisation founded in 1995 specifically to tackle epilepsy-related deaths. Through advocacy, evidence-based argument and network development the organisation has lifted awareness of epilepsy mortality. This in turn has sparked action to improve the care of people with epilepsy in the UK, and beyond.
In Australia, 65 year old national organisation Epilepsy Action Australia has resolved to partner with SUDEP Action to ensure that the expertise and experience of this leading organisation can also benefit people in Australia. Fittingly, the names of these two leading organisations share the word ACTION and a resolute commitment to make a positive difference.
This will be a powerful partnership. Together, tackling gaps in understanding will maximise the opportunities to reduce risk and help save lives. Ensuring people have a reliable source of information is the first important task. By combining the strengths of two complementary organisations the goal now is to see the important messages about epilepsy and risk finally delivered to all Australian health professionals and people living with epilepsy.
The partnership will be launched on SUDEP Action Day 2017, an ideal day to mark a new step forward for Action on SUDEP and epilepsy-related deaths in Australia. We hope this day marks a turning point in the Australian conversation about epilepsy that leads to successful, innovative policies for epilepsy care, underpinned by the resources, training and evaluation needed to lift the condition from its current ‘Cinderella’ status.
Carol Ireland, CEO, Epilepsy Action Australia
Rosey Panelli, International Research Consultant, SUDEP Action
How to cite:
Ireland C & Panelli R. Australia: striving for action. In: Hanna J, Panelli R, Jeffs T, Brockett P, editors. Continuing the global conversation [online]. SUDEP Action & SUDEP Aware; 2017 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.