Help us to help
EPILEPSY is recognised as a health condition by the Federal Department of Social Services.
Epilepsy is not on the NDIS register as a primary condition but as a secondary condition; that is, if the person has autism and epilepsy, Down syndrome and epilepsy, or intellectual disability and epilepsy.
Rare genetic epilepsy such as West syndrome and Dravet syndrome is recognised on the NDIS register as it’s uncontrolled by any medication.
Uncontrolled epilepsy is experienced by 30 per cent of epilepsy sufferers. SA and NT are the only state or territory governments in Australia that do not fund The Epilepsy Association of SA and NT.
In other states of Australia, not only are their services better and state governmentfunded, but they recognise the condition as both a health issue and a disability, and that primary health care for people living with epilepsy is an investment in public health funding, thus providing these families with more treatment options, support and services.
If epilepsy was recognised as either a health issue or disability by either portfolio and funded, The Epilepsy Centre would be able to provide those living with epilepsy the access to additional support through the NDIS (for those with a secondary condition of epilepsy), providing much-needed access to services for individuals, the families of children, and their support network.
The benefits of recognition would not only allow the centre to reach out and support a greater number of people, but also assist the Territory’s health budget by focusing on improving epilepsy management and reducing emergency hospital admissions.
The Epilepsy Centre of SA and NT can only offer so much to help with the limited resources available to it.
The centre seeks to provide exactly the same services as the rest of Australia but, without NT Government funding, it is simply unable to do so.
Families living with epilepsy in SA and NT suffer greatly with sleepless nights due to fear of the unknown, with many having to give up working full time to care for themselves and their children.
Living with epilepsy affects every part of a person’s life.
Children with epilepsy are at a great disadvantage due to days lost at school. It affects their academic achievement, and requires emotional and behavioural adjustments. If they had the support of the NDIS they could be given the help that would allow them to keep up with their schooling.
Our teenagers are socially affected by stigma and their loss of independence – and for some, the inability to have their driver’s licence.
In turn this affects their prospects to either gain or attend their jobs or studies.
The public misconception through lack of education and awareness about epilepsy causes a true battle for individuals trying to get employment, acceptance in the community and recognition of their rights.
Sadly, due to the psychological and physiological effects of epilepsy, the suicide rate of young people living with epilepsy is 25 per cent higher than that of the general population.
Sudden, unexpected death in epilepsy is the leading cause of epilepsy-related mortality, and the only known prevention is seizure control.
What we would like to see occur for SA and NT through funding programs is greater attention and focus on preventive care.
Improvement can be achieved through building stronger relationships with epilepsy nurse specialists and GPs to co-ordinate primary care in epilepsy management through providing individualised self-care epilepsy management plans by increasing individuals’ regular GP checkups.
As with other medical conditions, if this program was funded it would help reduce the strain on our already overburdened health system, reduce health expenditure and minimise the cost of hospital admissions.
We feel that it is very important that our state and territory governments take on a new and more caring approach, to help develop this preventive health measure in relation to epilepsy.
Everyone will benefit by saving time and money, and reducing the stress on individuals and families.
Presently, our client services team consists of three parttime registered nurses and one social worker. To achieve our goals, we need the funding to increase the number of staff members to be able to reach out to our families in the NT.
All our communication and training is done through Skype and telephone calls.
Face-to-face support and training is missing in the NT.
Our vision would be to visit Darwin and be based at one of the offices within the hospitals on a regular basis if the funding permitted, and/or to employ a permanent registered nurse or trainer based in the NT.
Every person living with epilepsy’s journey and story is individual, as are their needs.
Being able to meet with clients face-to-face will give us the ability to address specific concerns, thereby helping to build rapport and a good health provider relationship so we can accomplish the goals mentioned, through early intervention.
Epilepsy is more than seizures and requires a national approach.
Rosanna Di Vittorio is the client service manager of nursing for The Epilepsy Association of SA and NT