Epilepsy Association CEO shares his opinion with Liam Butler

Graeme Ambler CEO Epilepsy Association of New Zealand Inc shares his opinion with Liam Butler

How ENZ can assist the aged care and retirement sector develop the skills to serve older people who manage Epilepsy?

Graeme Ambler:

Epilepsy is not only a medical issue; it is also a social issue that includes education, welfare, housing, depression and social inclusion. Not only is our population growing, our population is also aging, so the prevalence and incidence of epilepsy increases within New Zealand. Six people a day are diagnosed with epilepsy.

The 65+ population with epilepsy is due to explode, estimated to quadruple by 2031, Epilepsy Association of New Zealand is setting about addressing the needs of those living with epilepsy through several strands.

• Epilepsy Association of NZ National Office, located in Hamilton, employs 15 professionally trained Educators located in 12 offices throughout the country. Epilepsy New Zealand Educators provide direct support to individuals with epilepsy through individual care plans, education and information including linkages to health professionals, local community agencies, groups and organisations. This service is accessible simply by phoning 0800 epilepsy (0800 37 45 37). Alternatively, by contacting the National Office 07 834 3556.

• Epilepsy New Zealand is undertaking skill development of the aged care and retirement sector workforce through online training and a professional skill development program. This program involves introductory knowledge followed by a more in depth training designed to develop support worker skills and knowledge to support those living with epilepsy. It is critical that the workforce develops to assist doctors in making a diagnosis by knowing what to look for and what to ask so as to clearly describe details of the seizure activity. It is also critical to understand that seizures can change with age. Understanding the many types of seizures, the personal challenges and management those living with epilepsy require can only improve their quality of life.

• Epilepsy New Zealand seeks to increase awareness of epilepsy in businesses and the general community through a variety of local and national campaigns including ‘Epilepsy is easier to live with when you understand it’ pamphlets located in GP’s and medical clinics and employer ‘Epilepsy NZ Best Practice Certificate’. The concept is to attract people with epilepsy to seek appropriate support whilst at the same time providing understanding of epilepsy to the greater community.

• Provides information through:

o its web page (www.epilepsy.org.nz)

o Social media (Facebook and twitter)and

o public seminars.

• National and local epilepsy awareness campaigns are undertaken throughout the year encouraging people to participate and to learn more about epilepsy:

• International Epilepsy Day February 8th

• Purple Day – March 26th

• Talk About It! – Month of November

Stroke is one of the major causes of epilepsy in the 65+ population together with head injuries caused through falls, previous brain trauma experience from the likes of car crashes or sports injuries, drug and alcohol abuse, degenerative diseases, metabolic change, toxicity and interactions, infections such as meningitis or encephalitis and simply the longer life spans that modern society benefits. Having a community that includes epilepsy, without bias, fear or discrimination is important not only to society but to security of people with epilepsy living within it so that they are included and not isolated.

Epilepsy is a disease of the brain defined by any of the following conditions:

1. At least two unprovoked (or reflexive) seizures occurring more than24 hours apart

2. One unprovoked (or reflexive) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years

3. Diagnosis of an epilepsy syndrome

Epilepsy is considered to be resolved for individuals who had an age-dependent epilepsy syndrome but are now past the applicable age or those who have remained seizure-free for the last 10 years, with no seizure medicines for the last 5 years.

To establish a diagnosis of epilepsy in seniors is more difficult than in the general population due to the fact of not understanding different forms of seizures and assuming unusual behaviour or sensations are the result of aging. It becomes more complex when living alone or with someone who has difficulty observing, remembering and describing seizures. It becomes even further complicated when existing disorders may resemble seizures. Those working in the aged sector play an important role in supporting diagnosis and management of the condidtion.

Although seizures are typically painless, end naturally, and are not dangerous to others, they can lead to complications in seniors so a correct diagnosis is critical. For example, although most seizures do not result in injury, some major seizures can cause additional stress on heart and lungs. For seniors, stress on the heart poses the risk of angina or heart attack and laboured breathing can also stress lungs and create complications for those with lung disorders. If a person has osteoporosis, and falls as a result of a seizure bone fractures could result.

A seizure may take many forms. For instance, a person having a seizure might stare blankly, jerk uncomfortably, feel a tingling sensation, experience a funny taste or have a convulsion. The kind of seizure a person has depends on the part of the brain that is affected, and where the excess electrical activity is coming from. It is possible to have just one type of seizure, or more than one type. Seizure activity however is usually predictable and people tend to experience their seizure in the same way, for the same duration each time. Everyone is different with some people only experiencing one type of seizure, others may experience more. Some may rarely experience a seizure; others may have them numerous times a day. Being self aware is important for those living alone and being able to discuss their particular situation with their doctor is important.

Generally speaking, people with epilepsy can lead a full and active life. The majority of people with epilepsy achieve good seizure control utilising one the 16 subsidised antiepileptic medications available in New Zealand. Combined with a sensible lifestyle, many become seizure free. Those that develop Complex Epilepsy have world class specialists able to assist either through surgery, diet or medications.

It is dangerous to stop taking antiepileptic medications without proper medical advice. Adjusting medication doses without medical advice can trigger more seizures which could be life threatening.

Epilepsy New Zealand is a membership organisation which continually represents its members by advocating achieving a positive quality of life for those in New Zealand with epilepsy. Recent media has highlighted cost of medication and geographic equality of health services. Epilepsy Association of New Zealand stance is clearly to support those with epilepsy.

Access to medication and treatments has to be affordable to the person with epilepsy otherwise people will be denied appropriate healthcare. What we know is the implications of going without treatment and appropriate medication can result in death in a worst case scenario. Increasingly, the health system is becoming more complex as policies are made by various government agencies to restrain their specific costs as they attempt to achieve New Zealand health goals. Of concern is when policies are made that move costs, via the consumer, such as pharmaceutical dispensing where increasing the dispensing frequency of epilepsy medication frees up funding for other pharmaceutical medications. This is a clear sign of priority setting one condition over another condition at the cost of those living with epilepsy.

Medical Cannabis is used with those at the extreme end of the spectrum, after all else has failed. It is not a miracle drug as it does not work for everyone however evidence suggests that there is some benefit to some people. Epilepsy Association supports more evidence based quality research and encourages more research into the matter to satisfy the medical profession and to ensure safety of users. New Zealand is involved with trials in Melbourne research however; results of the research will take time. It is also important to note the ‘stalking horse’ or political agendas involved within the debate.

Epilepsy Association of New Zealand is a charity governed by a Board of six volunteer Trustees. Its work is limited only by the funds that it has available to it. Whilst, in the short term and no guarantee of continuance, it has government income of 25% of its revenue. The remaining 75% is raised through community support, donations, bequests, philanthropic trusts, community trusts and gaming machine grants. Becoming a member not only helps to be kept informed, it also helps to serve those living with epilepsy and the sustainability of the organisation.

ends

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