Conference report

Environmental health
Volume 194 - Issue 1

Action to improve awareness, participation, care and support for people with epilepsy

Authors:  Beverley M Essue, Stephen Jan, Maree L Hackett, Andrew F Bleasel, Carol A Ireland, Samuel F Berkovic and Craig S Anderson

Med J Aust 2011; 194 (1): 7-9. || doi: 10.5694/j.1326-5377.2011.tb04135.x
Published online: 3 January 2011
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A national policy forum in Sydney connected researchers, clinicians, advocates, consumers and policymakers

The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) is Australia’s first population-based study designed to identify modifiable factors that will enhance resilience and reduce vulnerability to the psychosocial and economic impacts of epilepsy. SEISMIC involves collaboration between The George Institute for Global Health, Epilepsy Action Australia, the Epilepsy Society of Australia, Sydney South West Area Health Service, the University of Sydney, hospitals and clinicians in Sydney, and Austin Health in Melbourne. The study is funded by research grants from the National Health and Medical Research Council and the Australian Research Council. A key aspect of SEISMIC is the inclusion of a series of policy forums to ensure appropriate translation of evidence into policy and practice; the first forum was convened on 4 August 2010.

The burden of epilepsy

Worldwide, epilepsy is one of the most common neurological disorders. With a prevalence of 7 per 1000,1,2 an estimated 140 000 people are living with epilepsy in Australia. One-third of these people have had the diagnosis since childhood and, for many, it has a significant, life-long impact.3 The fundamental characteristic of epilepsy — recurrent, unprovoked seizures manifested by sudden, variable, transitory disturbances of consciousness and motor, sensory, autonomic or psychic function — can be successfully controlled by medication in most people. However, the diagnosis has wide-ranging ramifications, including significant disability (which is difficult to quantify). Medication compliance is often problematic, and there are many barriers to effective management (Box 1). Help-seeking behaviour and adherence to recommended care are adversely influenced by ignorance, fear, misunderstanding, cultural attitudes, fragmentation of health and social services, inconsistent referral practices, variable support systems across jurisdictions, exclusionary eligibility criteria for services and costly treatment options.4 Even with effective treatment, people are often affected in many aspects of everyday life, such as in their education, employment, relationships and mobility. Stigma, whether experienced or perceived, continues to be a major issue.4-7

Strategies for translating research evidence into policy

Fifty key stakeholders from academia, medicine, government and the community were introduced to practical strategies that are essential for development of health policy. Some preliminary lectures outlined the clinical and epidemiological aspects of epilepsy and gave an overview of the SEISMIC study and perspectives on consumer services from the non-government sector (Epilepsy Action Australia). Professor Stephen Leeder, Director of the Menzies Centre for Health Policy — who likened developing health policy to making sausages (“messy but effective”) — and Dr Andrew McDonald, Parliamentary Secretary for Health for the New South Wales Government, reinforced the importance of ensuring that the issues being addressed in SEISMIC are clearly defined so that feasible and cost-effective solutions can be proposed. The key “take-home” messages are summarised in Box 2.

Priority areas identified

Within several working groups, the attendees went on to define the key health and social issues that require a policy response. Four priority areas were identified: (1) to develop a model of care; (2) improve systems to maintain education, employment and mobility; (3) address stigma; and (4) identify research needs.

1. Develop a model of care for patients diagnosed with epilepsy

There was collective concern about the absence of a defined “best practice” standard of care for people with epilepsy. Importantly, from a medical perspective, epilepsy is not one disorder, but a large group of conditions needing specific diagnosis to determine the best treatment and prognosis. Determination of specific diagnoses in a community cohort is an important aspect of SEISMIC. The development of an optimal pathway which specifies a continuum of care, inclusive of medical and community services, would streamline the referral process and overcome some of the barriers people face while navigating the health, social welfare and community sectors. Such a model of care would make explicit the roles of the various health professionals involved in the initial assessment, diagnosis and management of patients with epilepsy, including general practitioners, general physicians (adult and paediatric), neurologists and epilepsy specialists. This could address the current gap in transition care — the gap between paediatric and adult care — which affects the special needs of adolescents. A suite of services could be “packaged” to simplify the patient journey. Essentially, a standard model of care would improve the quality of epilepsy care to ensure successful adjustment and outcomes from the condition.

2. Improve systems to maintain education, employment and mobility

People with epilepsy are often restricted in their ability to live independently. This is most evident in the barriers to employment and education, and the negative impact that driving restrictions have on people’s mobility and quality of life. While support services are available to assist in the completion of Centrelink and Medicare forms, and there are various community transport schemes and taxi voucher programs in place, efforts are required to raise awareness of the range of services available, address the inconsistency in the services being offered across jurisdictions, and refine eligibility criteria to reflect the diverse needs of people with epilepsy. The strong disincentives to maintaining employment must also be eliminated. Although people with epilepsy want to gain and maintain employment, they lose access to subsidies by doing so, and working conditions limit sick leave or medical attendance allowances. There also needs to be improvement in the education system to foster more awareness about people with epilepsy and to encourage greater tolerance towards them. Information about whether disclosure of illness is mandatory, when disclosure is necessary and to whom individuals are required to disclose their illness must also be clarified in this process. There are likely to be societal benefits to supporting people with epilepsy and allowing them to become and maintain themselves as productive citizens.

3. Address the stigma of epilepsy by normalising the condition

The stigma of epilepsy continues to negatively affect self-esteem, educational performance, productivity and health outcomes. Redefining epilepsy to encompass “fits, faints and funny turns that affect one in ten individuals” could improve public and government perception of the condition and its importance. Several other strategies were considered, including using prominent figures with epilepsy as “ambassadors”, expert “champions”, and harnessing the influential role of the media to raise awareness about epilepsy. Efforts to “normalise” epilepsy would help combat the associated stigma.

4. Identify further research needs

Valuable new evidence, with wide applicability, about the impact of epilepsy will be generated by SEISMIC. As the study plans to recruit several hundred children and adults soon after their diagnosis, it has the scope for being a repository of “whole-of-life” information on the long-term outcomes of the illness and impact of interventions. Securing ongoing funding was therefore acknowledged as a priority of the research group.

Concluding remarks

The forum was closed by Dr Andrew Bleasel, President of the Epilepsy Society of Australia, who reaffirmed SEISMIC’s raison d’être (in fewer than 18 words, as recommended): to identify strategies to improve the lives of people with epilepsy and their families.

1 Impacts of epilepsy

Clinical impacts:

Psychosocial impacts:

Economic impacts:

2 Recommendations for negotiating with government on health policy issues

Authors

  • Beverley M Essue MPH1
  • Stephen Jan1
  • Maree L Hackett PhD1
  • Andrew F Bleasel MB BS, PhD, FRACP2,3
  • Carol A Ireland Dip(RehabCouns), AFAIM4
  • Samuel F Berkovic MD, FRACP, FRS5
  • Craig S Anderson PhD, FRACP1
  • 1. Neurological and Mental Health Division, The George Institute for Global Health, Sydney, NSW.
  • 2. Epilepsy Unit, Department of Neurology, Westmead Hospital, Sydney, NSW.
  • 3. Epilepsy Society of Australia, Sydney, NSW.
  • 4. Epilepsy Action Australia, Sydney, NSW.
  • 5. Epilepsy Research Centre, Austin Health, Melbourne, VIC.

Correspondence: canderson@thegeorgeinstitute.org

Competing interests

None identified.

Acknowledgements

We thank everyone who attended and contributed to the Policy Forum. A list of attendees can be obtained from the corresponding author. Consumer feedback and other information is available at Epilepsy Action Australia http://www.epilepsy.org.au.

References

View this article on Wiley Online Library