Epilepsy and you...Epilepsy and you is an online self-management programme for people with epilepsy....
Transcript of Epilepsy and you...Epilepsy and you is an online self-management programme for people with epilepsy....
Epilepsy and you Self-management programme
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Welcome to Epilepsy and you!
Epilepsy and you is an online self-management programme for people
with epilepsy.
The programme covers:
Active self-management
Epileptic seizures
Managing your seizures
Safety, travel and your independence
Your feelings
Memory, stress and sleep
Work and daily activities
Relationships
As you work through this programme, there are activities designed to
help you think about different aspects of your life. You can use this
workbook to make a note of your thoughts.
Each week, you will also make an action plan. You can use the templates
at the back of this workbook to help you do this.
Your workbook is your private property, where you can write down all
your ideas, thoughts and feelings. You may wish to share them with
other people, or keep them to yourself. It’s up to you!
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
1 Active self-management
1.1 How does living with epilepsy affect you at the moment?
How does it affect you physically? How does it affect you mentally? How does it make you feel?
Does it stop you from doing anything?
Write down as many ideas as you can below.
How epilepsy
affects me
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
1.2 Your epilepsy journey
Think about your journey with epilepsy.
When did it start? What happened along the way? Where are you now?
Write or draw an overview of your journey below.
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
1.3 What do I want from this programme?
Think about what motivated you to do this programme.
What would you like to get out of it? What would you like to achieve by the end of the
programme? Write down at least three things below.
1.4 What are your goals?
Can you think of any goals you might like to set?
You might want to look at what you said you wanted to achieve by the end of the course. Or, you
can think of something completely different.
Write down a few ideas below.
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
2 Epileptic seizures
2.1 About your seizures
What type of seizures do you have?
What happens before, during and after your seizures?
How long do your seizures normally last?
2.2 First aid for your seizures
What should someone do if you have a seizure?
What to do if your seizures last longer than _____________
Who will I give this information to, and what resources can I use?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
3 Managing your seizures
3.1 Your anti-epileptic drugs (AEDs)
Name of AED Dose (in mg or g) How many times a day?
3.2 Remembering to take your AEDs
I remember to make my AEDs by:
OR
If it is:
and I am:
and I have:
then I will take my AED dose.
If I miss a dose of my AED, I should:
3.3 Possible side-effects of your AEDs
Discuss the following with a healthcare professional:
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
3.4 Preparing for your next appointment
The main points or questions I would like to discuss at my next appointment:
I will take along:
3.5 My seizure triggers
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
4 Safety, travel and your independence
4.1 Safety issues
What are some risky situations for you? Is there anything that you avoid doing?
4.2 Risk assessment
What is the activity?
What is it about your seizures that may put you at risk?
What can you do to make this activity safer for you?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
4.3 Safety around the home
Things I could do at home to keep myself safe:
4.4 Getting around
How the driving regulations affect me:
4.5 Adapting to life without driving
Things I can do to help me manage without driving:
4.6 My feelings about not being able to drive
Things I can do to help me manage without driving:
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
5 Your feelings
5.1 Your feelings about having epilepsy
5.2 Your experiences of stigma
5.3 How to challenge stigma in the future
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
5.4 Steps to improving your mental wellbeing
5.5 Unhelpful thinking styles
Unhelpful thinking style Example How could you think about the
situation differently?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
6 Memory, sleep and stress
6.1 Your memory
6.2 Impact of memory problems
6.3 Strategies for coping with memory problems
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
6.4 Feeling tired
6.5 Getting a good night’s sleep
6.6 Recognising stress
6.7 Relaxation
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
7 Work and daily activities
7.1 Wellbeing and activity
Connect
Get active
Take notice
Learn
Give to others
7.2 Risks at work
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
7.3 Your skills
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
8 Relationships
8.1 Your relationships
8.2 Effect of epilepsy on your relationships
8.3 Effect of epilepsy on people around you
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 1 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 2 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 3 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 4 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 5 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 6 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 7 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Week 8 action plan
Action plan Date:
My goal:
This week I will:
(what will you do, when, how often, how much, who can help you)
My reward is:
How confident are you that you can complete this plan?
(0 = not at all confident, 10 = totally confident)
Day Did you do it? Comments
How well do you think your plan went?
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Notes
As you learn more about your epilepsy and how to be an active self-manager, you will come up
with lots of ideas about changes you would like to make in your life.
Use this space to write your ideas down – this keeps them all in one place.
Epilepsy and you: pilot self-management programme for people with epilepsy Programme workbook
© Epilepsy Action 2015. Permission granted to reproduce for personal use only. Commercial copying, duplicating or reproduction is prohibited.
Need help?
If you want to talk to someone about epilepsy, contact the Epilepsy Helpline:
freephone 0808 800 5050 text 0753 741 0044
email [email protected]
If you have questions about this programme or technical difficulties, contact:
Epilepsy Action
New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY
tel. 0113 210 8800
Epilepsy Action is a working name of British Epilepsy Association.
A company limited by guarantee (registered in England No. 797997)
Registered charity in England (No. 234343)