This module is aimed in giving the new Epilepsy Foundation worker a foundation in understanding the importance of the EMP and how it forms one of the central pillars in the training and service environment.
It is advisable to view the EMP guidelines first so you can understand the context of the document:
The EF worked over a couple of years in partnership with Scope, Melba Support Services, Villa Maria and the Department of Human Services to develop this template. The objective was to create a disability sector-wide template that espoused the idea of 'one person - one plan'.
As a result of this work, this partnership was awarded the 2013 Victorian Disability Sector Award for Excellence in Improving Health. It is the standard template used in all DHS residential services in Victoria and is part of DHS's policy. Many other community service organisations use the template, and we strongly promote it's use in all our service and training.
Just as the phrase “person centred” suggests, it’s all about putting the person at the centre of decisions which relate to their life. The ultimate aim of a person centred approach is to understand what the person wants and needs to live their own, personally defined, good life.
This ongoing process involves listening, thinking together with their family and friends, coaching, sharing ideas and seeking feedback to ensure they are supported towards their personal goals, even as they evolve and change.
When supporting a person with epilepsy, safety is often a concern. It's important to ensure that discussions are balanced between, firstly, what is important TO the person, and then what is important FOR the person.
A good example of this is Ben, who says his privacy whilst bathing is really important TO him. He will however readily acknowledge that his safety is very important FOR him as well.
Together with his family and support worker, they implemented the following strategy:
OT assessment that recommended a mobile bath seat that can be used when Ben is feeling tired
Removal of glass shower screen, and replacement with plastic shower curtain
Recognising that Ben had a higher incidence of seizure activity in the afternoon, so organising showers in the morning with the support worker
Agreement that Ben will sing/talk during the entire duration of the shower, while the support worker waited outside the bathroom, ready to enter the moment Ben stopped singing/talking
Ben's support needs are then documented in the EMP.
It is important that all EF trainers understand person-centred practices and espouse this in training. This approach underpins the disability sector today, and is one of the founding philosophies of the NDIS and the self managed funding model.
The language used in this approach is important. We never use the word 'fit' to describe a seizure. Even if the person living with epilepsy uses this term, we use the word 'seizure'. A quick summary of other preferred terms is below:
What era in the disability sector focused on the person as a 'patient' who needed to be 'cared' for?
Person Centred Planning:
Select the correct term from the menu below:
Distinguish elements of a ‘good’ EMP
A 'good' EMP has been developed using the CLEAR Approach:
C - Collect the key medical information
L - Listen to the person
E - Engage the key people in the development of the EMP
A - Agree on the seizure descriptions
R - Develop the Right plan
Use this resource to guide you in the review/development of the EMP:
Working with parents in preparation for training requires the careful use of targeted questions. The following video steps through some of the preparation and considerations prior to talking to the parent.
Identifying the unique support needs, risk strategies and emergency responses requires a good sense of what questions to ask key people in the development of the EMP.
The saying 'people don't know what they don't know' is very apt in many circumstances. Common things that could be included here may be:
the potential learning implications for children
not all seizures require an ambulance
not all seizures are convulsive, and the person can in fact be conscious, even walking around during a seizure
unlike other chronic conditions (such as diabetes, asthma) the cause is not the same for all students, the symptoms are not the same, the treatment is not the same and not all episodes require an emergency response
post-ictal recovery and behaviour can often require more skill and time in support than the actual seizure itself
first aid training typically doesn't even talk about non-convulsive seizures
Also, as the trainer, you will learn to anticipate what trainees demand from your workshop. In summary, they include:
when do I call an ambulance
can you die from a seizure?
what about the other children/clients who witness the seizure?
doesn't every seizure cause brain damage - are they still competent?
how can I tell between a behaviour (non-epileptic event) and an epileptic seizure
In addition to asking the questions highlighted in the Developing an EMP document, these are key questions that the trainer should ask/check when an EMP is either being developed or presented as 'complete':
is there an injury history? Elaborate (this can quickly dilute anxieties)
what level of disclosure about our conversation are you comfortable talking about in the training session?
is the distinction between absence and focal seizure clear (this influences the support strategy, and is often interchanged incorrectly)
has the plan been endorsed by the doctor in the last 12 months?
what risks have been identified in terms of: bathing; showering; play equipment
what risks have not been identified, but typically exist: related to the triggers; related to the particular epilepsy syndrome, eg Dravet and heat triggers or LGS; related to injury due to falling
the red column indicating when to call an ambulance is complete and clear
seizure descriptions are concise and clear
contacting the parent/guardian should never be in the 'support during the seizure' section
how does the person perceive their epilepsy and what do they want out of the training?
an instruction to call for an ambulance after longer than 5mins for a tonic-clonic seizure should raise caution - seek EF Manager input.