It’s estimated that some 30,000 Australians living with intellectual disability also have epilepsy. Unfortunately, as many as one in four are misdiagnosed, largely due to inadequate training in recognising and managing seizures by their caregivers. Not only is epilepsy more common in people with intellectual disability than in the rest of the population; the requirement for multiple medications is often higher and they can experience more side effects.

It’s easy for an untrained worker to misinterpret seizure activity. Seizures can be subtle or can be mistaken for movements or mannerisms that are sometimes seen in people with severe intellectual and multiple disabilities. This misdiagnosis and mismanagement can reduce quality of life for the person and their family and, in some instances, can even lead to unnecessary death.

We wanted to do something about this so Epilepsy Action has developed 4 courses specifically crafted for workers in the disability sector, families, carers and general health providers who care for people with epilepsy and disability, with the ultimate aim of improving the quality of life of people living with epilepsy and disability.

Before developing the courses, Epilepsy Action underwent a process of consultation including:

  • Face to face interviews with key experts in epilepsy and disability
  • Desktop research
  • Survey of Disability Practitioners
  • Survey of people with epilepsy and disability/ their family and carers

Of those surveyed the majority (91%) stated that epilepsy stops them/ the person they care for engaging in their activities of choice. The majority (89%) of those of working age stated that epilepsy makes it hard for them to get and keep a job. Nearly all with a disability support worker (93%) said that training for their Disability Practitioners would help the person with epilepsy live more independently.  Despite this high figure, only one in five (21%) said their disability practitioner had any training in epilepsy.

So, the objectives of developing our courses were to:

  • increase the knowledge and skills of those caring for people with disability in the identification and management of epilepsy
  • reduce unnecessary hospital admissions related to the mis-management of epilepsy in people with intellectual disability
  • increase the skill level of the disability workforce and carers in the administration of seizure first aid and emergency procedures in the event of a seizure
  • facilitate medical management of seizure activity via effective observation and recording of seizures
  • equip carers with the knowledge to assist the person to manage lifestyle factors which reduce their seizure activity
  • enable the person with an intellectual disability to participate more fully in their activities of choice free from any avoidable effects of their epilepsy.

Our courses include a nationally accredited unit for support workers offered in conjunction with Red Cross College. There are also three shorter courses which cover issues such as how to identify seizures, how to reduce risks and how to observe and record seizures. Two of these courses are relevant for people living with epilepsy regardless of whether they have an additional disability.

The course includes video content of people with disability and epilepsy and their family and carers, various experts such as neurologists and nurse educators. Assessment requirements for the TAFE qualification will be met through online assessments and online support from epilepsy and disability specialists.

On Tuesday, 12th June 2018, the Victorian Shadow Minister for Disability Services, the Hon. Tim Bull MLA launched Epilepsy Action Australia’s innovative new Epilepsy and Intellectual Disability Training Course at La Trobe Financial in Melbourne.

These courses were made possible with significant support from The Ian Potter Foundation, Gandel Philanthropy and John T Reid Trust and we sincerely appreciate their backing.

You will find these courses on our website here.

Carol

As those with epilepsy know only too well, there are a lot of misconceptions about the condition. One of them is epilepsy does not lead to death.

 

Unfortunately, one tragic consequence of epilepsy can be SUDEP – Sudden Unexpected Death in Epilepsy, which is estimated to be responsible for a devastating 150 epilepsy-related deaths each year in Australia.

 

SUDEP occurs when a person with epilepsy dies suddenly and prematurely and no other reason for their death is found. Much more research is needed and a lot more needs to be done to educate those with or affected by epilepsy on the risks involved and the recommended steps to take to minimise them.

 

Today is SUDEP Action Day (October 23), and I am very pleased to announce that, Epilepsy Action Australia has joined forces with leading international organisation SUDEP Action (UK) to drive awareness of this often overlooked issue.

I am confident that this new powerful and exclusive partnership with SUDEP Action will lead to more research, awareness and most importantly more lives being saved.

By combining our strengths we will ensure people have the most recent and reliable information and advice, and it will allow us to extend our reach to more healthcare professionals and families across Australia.

This year’s SUDEP Action Day theme is appropriately ‘Why’: ‘Why don’t more people know about SUDEP?’; ‘Why is talking about SUDEP important?’; and ‘Why do people with epilepsy need to know about the risks and the precautions they can take?’.

To those questions, I would add: ”Why did it happen?” – the question I have heard from many distraught families over the years who have lost a loved one to SUDEP. They have pondered that very question over and over, wondering if they could have prevented it, if they had only known SUDEP existed.

Our new collaborative partnership with SUDEP Action will help us further provide the best possible care and support for bereaved families.

In addition, we are committed to supporting increased research to find out the exact cause of the fatalities, which affects around 1 per 1000 people with epilepsy. An exact cause is unknown. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart. Risk varies from person to person so it is important for people to learn about their own epilepsy and work actively with their healthcare professionals to minimise the number of seizures.

This SUDEP Action Day, I urge you to find out as much as you can about SUDEP by reading some of Epilepsy Action’s more detailed information here and then contact your doctor if you have any concerns about you or your family member’s medication and seizure control.

If you would like to become involved in helping promoting awareness, the official SUDEP Action Day page has a wealth of ideas including changing your social media covers or publicly displaying some of the great informational posters available to download.

SUDEP Action Day provides an opportunity for us to truly ‘take action’ on openly discussing SUDEP, and also for us to take a moment to consider the families of those who have lost someone as a result of epilepsy.