eLearning Epilepsy Management Plans (EMP)

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:

 

CLICK FOR GUIDELINES

 

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.

 

An outline of this award is featured:

 

 

 

Define the key components of the EMP

What do you think is one of the most important differences between a medical and social approach to supporting a person with epilepsy:

The EMP is not just a document.  It is a tool that essentially allows the person and their supporters to self advocate, with the endorsement of the doctor.

 

What is an EMP? from Janita Keating on Vimeo.

 

  • medical is concerned with hospitals, social is concerned with living in the community
  • a social approach focuses more on the person's social context and medical issues, whereas a medical approach places more emphasis on curing a 'problem'

Explain what a person-centred approach to developing an EMP involves

What era in the disability sector focused on the person as a 'patient' who needed to be 'cared' for?

 

 

 

 

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.

 

 

 

Person Centered Planning from 87amanda

 

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:

 

 

  • Programmatic
  • Institutional
  • Community Membership

Person Centred Planning:

  • highlights problems that need to be fixed
  • relies mostly on professional judgements and decision-making
  • supports lifestyles that the person wants

Select the correct term from the menu below:

  • epileptic
  • person with a disability
  • wheelchair-bound
  • patient

Distinguish elements of a ‘good’ EMP

Which statement is incorrect:

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:

 

 

  • some people are not aware if they have a seizure trigger
  • all people like to be told what happened during the seizure once they've recovered
  • some people only have seizures during the night
  • showers tend to be a safer option than baths

Apply the approach 'Targeted questions - Collaboration - Communication' to given case scenarios

Contacting the parent/guardian should be in what part of the EMP?

Collaboration

 

 

 

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.

 

 

Click here for the video link

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

 

 

Let's now look at a few sample EMPs for you to review and then share at the next team meeting:

 

 

Click here for the EMP for Joe Person

Click here for the EMP for Anonymous

 

Using Targeted Questions

 

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. 

 

This checklist can be downloaded here

  • Help during the seizure section
  • Help after the seizure section
  • Seizure description table

If there has been no change to the EMP in the past 12 mths, does the doctor need to re-sign the EMP?

  • Yes
  • No
  • Only if there is a medication change or change in seizure presentation

The important reason why an EMP needs to be clear as to whether a staring episode is an absence or focal seizure is:

  • the support provided will often be different
  • you need to use the right language - this is a medical document
  • this is the language the parents have used, it's best to keep to that

Support clients in use of the 'Know Me, Support Me' suite of resources in developing an EMP

The resource "Developing an Epilepsy Management Plan" is designed to be used by:

 

In addition to the above resource, we have a plain English booklet explaining epilepsy, as well as medical review appointment checklists and a Better Practice Guide.

 

CLICK HERE TO REVIEW THESE RESOURCES

In the disability sector, the EF provides free resources that enables the person with a mild-moderate intellectual disability to have a voice in the development of their EMP.  These resources are also excellent for use by service providers.

 

These resources form the basis of our training in the disability sector.

 

 

  • support workers
  • parents
  • EF workers
  • all of the above

Which document would you recommend for a support worker to use to engage the person with a mild-moderate disability in their upcoming medical appointment?

  • the Epilepsy Wellbeing Map
  • the My Medical Appointment document

What formats is the "Learning about Epilepsy" resource in? (tick all that are correct)

  • electronic pdf format
  • audio format
  • DAISY talking book format
  • hard copy
  • animated format

Discuss the role of the Epilepsy Trainer in facilitating training using the EMP

Who is more important, the customer (who pays) or the client (person with epilepsy) in fee-for-service training at a school?

The role of the trainer in delivering training to the EMP is multifaceted. 

 

 

Go to the staff meeting ready to discuss what you see as the possible complexities and challenges of meeting all these expectations and how you can meet these.

 

To start you off, consider the following scenario:

 

Jane is in Grade 6 and had been hospitalised earlier in the year due to seizure activity.  She is now relatively well controlled with her seizures.  You have spoken to all the relevant people and can summise:

 

  • the parents are concerned as their daughter's friendships are strained ('they were happy to hang back with her for the first few weeks, now it's waned off')
  • the teacher is saying she is falling behind in her work as she always seems to be tired
  • the teacher also says other students are pleasant to Jane, but cautious
  • the student gets the sense that she's fallen behind a bit in school, however generally feels things are pretty good - 'anything's better than having all those seizures'
  • the prinicipal is very nervous that if another ambulance has to be called, other parents are going to escalate and say it's not fair that their child has to witness these seizures
  • the doctor has suggested PRN midaz would be beneficial should she have a prolonged seizure, while,
  • the parents don't want to 'rock the boat' and ask the school to administer the midaz, and don't have a lot of confidence in their capacity

 

As the trainer, you have been given a well written EMP endorsed by the doctor.

 

Q:  what aspects of the EMP are you going to emphasise in the the upcoming training?

Q:  what additional resources could complement your training in this instance?

Q:  consider all 6 sides of the "cube" in terms of how your pitch/delivery etc will be altered.

  • whoever pays for the service has the final word on what will/won't be covered in training - the school
  • the client has the final word on what will/won't be covered in training - they are who we are here for
  • both the customer and client are important to EF.  The trainer needs to balance the rights of the client in terms of disclosure and their interests, the doctor's instructions, and the needs of the school.  All our work tries to achieve great outcomes for people living with epilepsy, we do not compromise client outcomes because a fee is involved