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Feel the fear and do it anyway…


Susan Jeffers ®

A workbook for people with low mood and anxiety linked to stroke

Mike Scanlan
Sue Wood
Sara Gregory
and the Community Stroke Team

Northamptonshire Healthcare NHS Foundation Trust – Pathfinder Project – Revised 8/12


1. Welcome

Welcome to the group and the booklet we will be using to help us to help you feel less
anxious and in more control of your life following a stroke.

Dr. Mike Scanlan and Sue Wood work in The Wellbeing Team, part of the NHS in
Northamptonshire. We have received funding from the Department of Health to set up and
run courses for people who have had a stroke and feel worried, panicky, and low.

Together with colleagues in GP surgeries, the community and the local hospital we are
developing a course aimed at helping you to manage the effects of your stroke and
develop new strategies to help you to feel relaxed and enjoy life more.

Many of you have been referred by a healthcare professional who recognised that you
may benefit from learning some new skills and techniques to help you deal with feeling
sad, low, anxious, or panicky.

Having a stroke can affect how you see yourself, experiencing problems that may lead to a
hospital admission or feelings of panic, helplessness or low. You may have noticed that
remembering such times makes you feel scared or uncomfortable, if so share your
concerns – you are not alone with these thoughts.

The brains ‘normal’ response to fear is to prepare the body to behave vigorously.
However, this is unhelpful if you have had a stroke.

We are going to look at strategies that bring together topics to help you deal better when
the effects of your stroke start to affect how you, including relaxation, thinking differently,
re-engaging in pastimes that you used to enjoy and engaging in new pursuits.

We know there are a number of significant benefits gained from working as a group.

 The other participants all know what life is like after having a stroke
 You will all have your own helpful strategies to share
 It may be that you will be able to support each other emotionally during and after
the group has finished
 You can develop your social circle which is often restricted when you have a long-
term condition

Remember you are the expert in your personal experience of having a stroke, so we will
be using your expertise too!

We look forward to getting to know you and learn from you and the other participants
during this course

Kind regards,

Sue & Mike

2
2. Index

1. Welcome page 2

2. Index page 3

3. Introduction page 4

4. Group participants

5. Group programme

Week 1 – The importance of breathing exercises and relaxation

Week 2 – Breathing mindfully

Week 3 – Becoming more compassionate with yourself

Week 4 – Making compassionate decisions

Week 5 – Reviewing breathing, relaxation and mindfulness

Week 6 – A shared understanding about living with a stroke and


breaking the vicious cycle

Week 7 – Doing more can help you feel better and less tired

Week 8 – Summary and review

3
3. Introduction

Who we are
Mike Scanlan, PhD, is a Nurse Consultant in Changing Minds with a broad background in
mental health and combines clinical work with training, research and developing innovative
projects.
Mike played a key role in developing new services for people with common mental health
difficulties and developed a number of training packages for healthcare staff.
Mike delivers a wide range of therapies including Mindfulness, EMDR, Compassion
Focussed Therapy, and sleep groups.

Sue Wood works in The Wellbeing Team as a Psychological Wellbeing Practitioner (PWP)
with people who experience common mental distress such as depression, low mood,
anxiety, and panic.
Sue qualified as a General Nurse in 1987 and has experience of working with carers.
She has recently helped to deliver a module to qualified staff about working with people
who have a long-term condition and common mental distress at the University of
Nottingham.

Sara Gregory is based in the Community Stroke Team and has helped to develop and
deliver this group with Mike and Sue.

We are passionate about working with people who have a long-term health condition, such
as stroke, COPD and diabetes, and also feel anxious, low, or panicky, helping them to
make the most of their lives.

Contact details
Mike Scanlan, Clinical Lead mike.scanlan@nhft.nhs.uk

Sue Wood, Project Lead sue.wood@nhft.nhs.uk


01536 400 600
07827 277 171

Your Group
 The group will run every Thursday starting at 11.30 am and lasting about 40 minutes
for eight weeks

 In between the group sessions we will phone you to answer questions or discuss
anything you don’t want to talk about in the group

 We will be referring to this booklet throughout the group

 In this booklet you will see this picture symbol when there is an activity for
you to do, we will discuss the activity in the group session before you need
to start it

 You will see this picture to tell you about your home practice

4
Confidentiality
 We suggest that you consider whether you want to be on your own and private during
the phone sessions or prefer to have a friend or family member with you

 We will not pass on any information about you to anyone else unless you have
consented to this

 If you wish to make contact with any other participants between group sessions or once
the course has finished please contact us and will check that others agree to sharing
their phone number

What we need you to do

 Commit to joining every session, this may mean you will need to change appointments
or other commitments that occur at the same time

 We encourage you to actively participate in the group sessions by talking about your
own experiences and sharing your concerns. The other participants will want to learn
from you too!

 Complete the worksheets in your booklet, it will be helpful for you to refresh your
memory

 Practice your ‘homework’ regularly between sessions

 Complete a set of questionnaires before each group session

4. Group programme

Over the course of the next seven weeks, we will be talking about and practising the
following:

Week 1 – The importance of breathing and relaxation

Week 2 – Breathing mindfully

Week 3 – Becoming more compassionate with yourself

Week 4 – Making compassionate decisions

Week 5 – Review of weeks 1 - 4

Week 6 – A shared understanding about living with a stroke and


breaking the vicious cycle

Week 7 – Doing more can help you feel better and less tired

Week 8 – Summary and review

5
5. Questionnaires
For us to be able to show the benefits of the group on your health and wellbeing we ask
you to complete some questionnaires; they will be familiar to you as they are the same
ones you completed during your assessment session.

You will find the questionnaires after each group session plan.

We will also ask you to complete a feedback questionnaire at the end of the course to tell
us what you have found helpful and what we can do to improve the group.

The questionnaires will provide some (anonymous) information to the NHS and
Department of Health including the outcome of this treatment.

If you have any questions or if you are unsure about completing them, please contact Sue,
you don’t need to wait for the next group session.

6. What Next?
You will have a visit from one of our practitioners once the group sessions have finished.
You will complete the set of questionnaires again and have the opportunity to share your
workbook – if you wish, discuss your experience of the course, how you are feeling and
options for additional psychological support should that be appropriate.

We will be developing some ‘Master Classes’ that you can join in with – these will be about
topics such as improving your sleep; Tai-Chi; adapting to living with long-term conditions
and mindfulness. Once dates are confirmed you will be invited to join, they will also be
delivered as a phone conference or with audio-visual equipment when we have the
equipment to do so.

We will contact you in six months to offer review appointments to see how you have used
the strategies you have learnt and how you are feeling.

We encourage group participants to maintain contact with other group members to


continue the friendships and support you have developed.

6
Group Participants

You may wish to note down the names and something to remember each person by as a
reminder of the other group participants

First Name Reminder

Sue Wood Wellbeing Practitioner from Changing Minds

Sara Gregory Nurse from the Community Stroke Team

Feel the
fear and do
it anyway
group

7
8
Week 1 – The importance of breathing and relaxation

We all know it is important to relax; it can help to reduce anxiety


and stress. While we are not always very good at taking time out
for ourselves, we usually feel better when we do.

When you have experienced a stroke, it is common to feel


anxious and worried but practising breathing and relaxation
exercises can help you to relax.

Over the next few pages, you will find some breathing and
relaxation exercises for you to try. Relaxation is a bit like exercise and you may need to try
a few different ways before you find what helps you most, and remember the benefits will
increase with practice!

Have a go at each of the techniques, not all will be beneficial to everyone, and some
people may experience more benefit than others, however most people will gain
something.

You can combine two or more relaxing exercises.

Make a note or the breathing/relaxation exercises you find most helpful or other
information that shows how you have benefitted from the breathing and relaxation
exercises in the table below.

1.

2.

3.

4.

9
Breathing Exercise – 7-11 Breathing
You may notice you begin to breathe more quickly when you feel stressed; this exercise
can help you to regulate your breathing.

It can also help you to relax when you make your ‘out’ breaths longer than your ‘in’ breaths
by stimulating your sympathetic nervous system.

7-11 Breathing Exercise

 Sit comfortably, close your eyes if you wish

 To get an idea of how long to take when breathing in and out you can time
your breath.

Count to seven in your head over a period of about 4-5 seconds then count to
eleven in your head over a period of about 7-8 seconds

You do not need to be precise, this will just give you an idea of the length for
your “in” and “out” breaths

 Take a slow breath in to the count of 7

 Hold for a few seconds

 Release your breath “out” in a controlled and slow manner to the count of 11

 Hold for a few seconds

 Repeat as necessary – you will usually notice the benefits after doing at least
5-6 times.

You may continue for as long as you feel comfortable

10
Relaxation – Progressive Muscular Relaxation

We are not always aware that our muscles are tense, Progressive Muscular Relaxation
(PMR) can help you to recognise how your muscles feel when they are tense and also
when they are relaxed.

By having this awareness of tension in your body, you can learn to relax your mind and
body.

Progressive Muscular Relaxation Exercise

 Find a comfortable position, either sitting or lying where you will not be disturbed
and close your eyes

 Take several deep slow breaths and let go of your inhibitions

 Focus your mind on each of the following body parts in turn, concentrate on
tensing them as hard as you can, hold for a few seconds then release.
Pause for a few seconds before moving on to the next part

 It is OK if you find some of your muscles are stiffer than others or some areas are
difficult to feel due to your stroke

Try to focus on areas you can tense and release.


If an area feels stiff, focus on relaxing it

 We are going to work through your body

> Feet
> Ankles
> Lower legs
> Knees
> Upper legs
> Bottom
> Lower back
> Lower abdomen
> Sides of torso/body
> Tummy and back
> Chest
> Shoulders
> Upper arms
> Lower arms
> Wrists and hands
> Neck
> Head and face

When you have completed this technique, spend a few moments enjoying the feeling of
relaxation that you have achieved. Gradually bring yourself slowly back round.

11
Practice makes perfect!

To benefit from breathing and relaxation exercises we recommend you do the following:

 Practice a breathing and/or relaxation exercise at least four times each week for at
least 30 minutes

 Even if you don’t notice any difference at first, keep practising as relaxing does not
always come naturally to us and it may take time to notice a difference

 Use the Relaxation Diary on the next page to record your level of relaxation before
and after each exercise

 Over the coming weeks take a refer back to your diaries to monitor your progress

 If you do not find a method of relaxation that is helpful after 2-3 weeks, speak to your
guide about an alternative method

Week 1 Home Practice

 Practice the relaxation and breathing exercises four times this week, spending about
30 minutes each time

 Complete your relaxation diary below

 Read the next chapter ‘Breathing Mindfully’

 We will contact you before the next session to find out how you got on and to answer
your questions

12
Relaxation Diary

Use this scale to measure how relaxed you felt before you started the breathing and
relaxation, write the appropriate number in the box below.
Rate again after you have finished

Not at all Slightly Moderately Very Completely


0 2 4 6 8

Breathing or
Rate before Rate after
Day Relaxation
exercise exercise
Exercise
Example:
Monday 7-11 breathing 4 6

13
Weekly Questionnaires – Complete before the next group session

1. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

14
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

15
Week 2 – Breathing Mindfully
Many people who have had a stroke find they have a
tendency to whittle about the past and worry about
what the future will bring. Asking questions that have no
answers such as “what
will happen if I have another stroke”.
This style of thinking results in frustration and low
mood. In today's session, we will look at the
importance of living in the present.

A very simple way to begin the process of ‘living in the now’ is to learn a skill that we call
mindful breathing.

Mindful Breathing Exercise

Make sure that you are sitting comfortably with your eyes closed

 Now bring your attention to your breathing

 Just notice your breathing, focus your attention on what happens as you breathe in and
you breathe out.

You may find it helps to imagine that you have an inflatable balloon in your tummy
each time you breathe in the balloon inflates
each time you breathe out the balloon deflates

 Just to focus on the sensations and the actions that accompany the process of
breathing

 It is usual to have thoughts popping into your mind even though you are trying to focus
on your breathing

Whatever you do avoid getting cross with these thoughts, it really won't help, just smile
at them
It can help to think of unwanted thoughts as being like sunshine.
Think back to a time when you have been sunbathing in the garden, your eyes closed
then all of a suddenly a cloud has blocked out the sun.
You have two choices; you can rant and rave at the cloud or you can smile at it. Either
way, the cloud will move in its own good time. It takes a lot less energy to smile.

 As you focus on your breathing, you may notice sounds, physical feelings, and
emotions

That's okay, just notice them and take your attention back to your breathing.
Whenever you notice that your attention has drifted off and is becoming caught up with
the stuff of life, smile and bring your attention once again back to your breathing

16
How mindfulness can help you
The aim of learning to breathe mindfully is to help the person develop calm non-
judgemental awareness, allowing thoughts and feelings to come and to go without getting
caught up in them.

Becoming more mindful is a great


way of finding a sense of inner
peace. Like many things it takes
time and effort to develop your
skills of mindfulness.

Look forward to doing the breathing


exercise, it should never feel like a
chore.

Many people who live with long-


term physical health problems
discover that mindfulness has a
positive effect in their life.

The link below is for a video on your computer, it is Jon Kabat-Zinn talking about
mindfulness. Jon is know across the world for his work as a scientist, writer and teaching
mindfulness within medical profession and society.

This is a long video and you may want to watch it in two or three stages.
Do make time to watch it; it will inspire you to become more at peace through being
more mindful.

www.youtube.com/watch?v=3nwwKbM_vJc

Coping better when living with stroke affects the way you see yourself
Nobody likes feeling scared and many people feel scared when they think about times
when they have panicked due to feeling helpless.

Thinking back to times when problems associated with your stroke have led to a hospital
admission or you have experienced panic, or feelings of helplessness.
Have you noticed that remembering leaves you feeling scared or troubled? If it does, share
your concerns as you are not alone with these thoughts.

Week 2 Home Practice

 Continue to practice the relaxation and breathing exercises

 Watch the DVD and practice the mindful breathing

 Read the next section

17
Weekly Questionnaires

2. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

18
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

19
Week 3 - Becoming more compassionate with yourself

Very often, people with long-term physical conditions become very critical and are too hard
on themselves. Just imagine how it might be if you could stay calm, stay focused and able
to deal with things logically, compassionately, and sensibly.

We are going to look at how you can do this by using compassionate decision-making
skills and getting in touch with what we call your ‘Compassionate Friend’.

Step One – Spend some time doing a breathing exercise and perhaps the body scan
to help you feel calmer.

Step Two – Read the words below out to yourself. Do they remind you of anyone? Have
faces or images of people you know or have watched on TV, seen in films or read about
‘pop’ into your consciousness?

The qualities of a compassionate friend that help you through difficult times.

 Kind
 Firm
 Compassionate
 Wise
 Understanding
 Generous
 Humorous
 Non-judgemental
 Patient
 Reliable

If not, you may find it helpful to look at some images in a magazine or on the internet of
well known people who you recognise as having the qualities of a compassionate friend.

Use the space below to draw a picture, write the name of or stick a
photograph of your compassionate friend or what you imagine this person
may look like.

20
Step Three – Now close your eyes and try and ‘build’ your image of your compassionate
friend. It may help to use all of your senses.
Think about how they look, what they are wearing, what their voice sounds like and even
how they smell.

Step Four – If you are comfortable with the person you have chosen, try checking out
some of your worrying or self critical thoughts with them. If you shared your thoughts with
them would you expect their answers to be…

Wise? Compassionate? Not blaming? Kind? Firm? Understanding?

What would they say?

If so this is probably someone that you can use to help you make to the right judgements
and the best decisions for you.

Well done you have a compassionate friend!

How do I use my compassionate friend?


When you are thinking and making decisions that are unhelpful or critical.
When you are being too hard on yourself or others.

When you are being hard on yourself, you may find it useful to close your eyes and use
your visualisation skills to bring your compassionate friend to mind and spend some time
with them. Ask them questions or simply spend time with someone who truly has your
interests at heart.

Week 3 Home Practice

 Continue to practice the relaxation, breathing and mindfulness exercises

 Once you are relaxed, bring your compassionate friend to mind and spend time with
them, asking questions such as ‘am I usually self-critical?’ or ‘are my feelings linked to
the stroke?’

 Read the next section ‘Making Compassionate Decisions’ before our next group

21
Weekly Questionnaires

3. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

22
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

23
Week 4 – The skill of making compassionate decisions 1-2-3

If you are feeling worried or anxious you may find your breathing quickens and thoughts
start to race, often giving you a sense of needing to hurry up.
This is unhelpful.

Let’s look at three steps to guide your use of making compassionate decisions to help you
to manage these feelings.

1. Stop

A nice way to slow everything down is to learn to stop your thinking.


We are going to teach you a 54321 exercise, which can help you to do this.

Start by just thinking about a thought that is bugging or worrying you.

 Now look around the room and name five things you can see
 Quickly and calmly touch four things within reach
 Now concentrate and name three things you can hear
 Can you name two things that you can smell?
 Finally, name one thing that you can taste

Now your worrying thoughts have stopped or interrupted. Have a go yourself and share
with others so they can benefit from you teaching them this strategy.

2. Create calm
Now you have managed to stop the thoughts from chasing around in your head we are
going to use intelligent kindness to create the calm needed to deal with the situation.

A good way to create calm quickly and effectively is to spend some time using pursed lip
breathing.

Pursed Lip Breathing

1. Firstly purse your lips together


2. Take a gentle breath in through your nose
3. Imagine that you have a candle just in front of your face
as you blow out the air through your pursed lips
Try not to blow the candle out but just make it flicker.
4. Continue with this exercise
5. Do not worry if you struggle a bit at first or it takes a bit
of time to get used to, you are not expected to be an expert immediately

This is worth practising to gain the greatest benefit

Your experience – If you have developed your own techniques for creating calm
quickly and easily, please share them with the group.

24
3. Think differently about the things that bother you
Now that you are feeling calm and collected, take some time to try new ways of thinking
about the things that make you to feel upset, down, scared, or even hopeless.

Distancing
We are often much kinder to others than we are to ourselves.

Imagine a scenario where you are at the post office counter and just as the lady is serving
you, you drop all of your shopping on to the floor making a mess. You are now reluctant to
go back to the post office and will drive 4 to 5 miles further to post a parcel.

If a friend told you the same story, but it had happened to them, what would you say to
them about the situation?
I bet that you would be sensible and compassionate and would say something like:

‘Stop worrying about it. Everybody drops things, not just people who have had a
stroke. She must see hundreds of people every day won't even remember it’.

This skill is called distancing and is about changing the questions we ask ourselves, such
as:

‘What would you say to a friend who is in the exact same situation and having the
same thoughts?”
‘What would a friend say to you if they knew you were thinking a particularly
unhelpful thought?”

Use your compassionate friend or guide


As we said earlier, your compassionate friend will give you good, compassionate advice
and help you to make sensible decisions. By bringing up a picture of your compassionate
friend or guide, you will be using the right side of your brain, responsible for imagination,
creativity, and imagery to reinforce the guidance of your compassionate friend.

Be in your adult mode


A third skill to help you to think differently is to keep your style of thinking ‘adult self’.

When you are scared or panicky you may find you automatically start thinking in what
some psychologists call an unhelpful ‘child’ state.
Can you think of times when you have reacted to situations by being stroppy or sulky? It is
likely that you were firmly in your unhelpful child mode!

Alternatively you may find yourself wagging your finger in a blaming, ‘critical- parent’
stance instead. This only achieves one thing – it makes you feel bad about yourself.

Find out what your current ‘state’ is, simply ask yourself…

“Am I in my unhelpful child state, critical parent or am I able to stay in my calm


sensible and compassionate adult state?”

If you can learn to recognise when you are in the unhelpful ‘critical parent’ or ‘child’ states
of thinking you can take some time to get yourself into your sensible and wise adult
position.

25
Think about what ‘state’ you are in when you help friends? It is the wise sensible adult?

What about your compassionate friend or guide? I bet they are always in their helpful and
wise adult state!

Self-checking
Finally, we need sometimes to do a bit of self-checking about the way we are thinking. A
very simple way of doing this is to ask ourselves one question.

“Is the way I am thinking kind and supportive to me and the people I love?”

If the answer is no…

Stop, create calm and use your new skills to think differently

Act in the manner that your calm mind thinks best


It is usually not enough just to be in charge of our thinking.
It is not helpful if we only know what we ought to do in a situation but carry on doing what
you have always done.

It can make you feel frustrated. It can lead to low mood and even depression.

You need to learn to trust your thinking again.


Part of this relearning is about being brave enough to experiment and tell yourself

“If that's what my calm, sensible, and compassionate mind thinks is the best way to
act, then I will trust myself and do the right thing”

Test this out.

Ask yourself.

“Is this the best decision for me, the people that love me and for the situation that I
am in?”

Activate yourself
This is the final part of our compassionate decision-making process and the bit that
ensures that the progress you make lodges in your brain.

As you begin to be compassionate, some of the damage that living with fear can do to the
bits of our brain that scientists call our ‘neural networks’ can begin to repair.

Once you have started to think differently and to act more compassionately, you need to
find a way to let your brain know just how well we are doing.

After a bout of compassionate decision-making, simply smile, puff your chest out, put a
spring in your step, and tell people just how pleased you are now you are beginning to turn
things around.

Go on-blow your trumpet!


You are becoming a compassionate decision maker.

26
Week 4 Home Practice

 Continue to practice the relaxation and breathing exercises

 Continue to use your compassionate friend

 Practice the mindful breathing

 Read the next section

27
Weekly Questionnaires

4. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

28
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

29
Week 5 – Review

This week we will be sharing our individual experiences of the group so far, what works
well and what is difficult.
How you have managed to adapt the practices to your individual needs and worked
around limitations due to your stroke.
What we can learn from each other.

Before our session on Thursday, ask yourself the following questions

1. What have I found helpful so far?

2. Has anything been difficult?

3. What or how have you adapted so you can do the activity?

4. When and how often are you using the different exercises?

5. Do you want more information or support on any of the topics we have covered so
far?

Week 5 Home Practice

 Continue to practice the relaxation and breathing exercises

 Continue to use your compassionate friend

 Practice the mindful breathing

 Read the next section

30
Weekly Questionnaires

5. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

31
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

32
33
Week 6 – Developing a shared understanding about living with a stroke and
breaking the vicious cycle

We tend to experiencing distress this in three stages and


first described by a psychologist called Lang in the1960’s.

1. Physical feelings - how we feel in our body


2. Unhelpful thoughts – changes in the way we think
3. Unhelpful behaviours – what we do

1. Physical Feelings - this is when we notice a physical response in our body to a


stressful situation or worrying thoughts. The physical responses often include a pounding
heart, changes to breathing and sweating.

2. Unhelpful Thoughts – these are the thoughts that follow the physical responses and
describe what you make of the situation. These thoughts are often self-critical or
catastrophic for example ‘If I over exercise I will have another stroke or die’ or self-critical ‘I
am not worth bothering with because I can’t …’

3. Unhelpful Behaviours – how we respond to the unhelpful thoughts and physical


feelings. The fearful thoughts usually lead to unhelpful behaviours/activities or avoiding
some things. Some examples of unhelpful behaviours include avoiding physical exertion,
avoiding going out, over eating or getting drunk.

Developing your own shared understanding


We are going to look at how your physical illness, reactions, thoughts, and behaviours
affect each other. We will use this information to work together to plan how we can
improve your physical and psychological health. Read John’s Story.

John’s Story
John has become distressed since having a stroke – he is 59
years old and feels ashamed about not being able to enjoy
eating out. He fears that people will be critical about his
speech and swallowing.
An hour or so before going out for a meal with his close friends he feels hot and
sweaty and has a headache. He is worried about how other people will perceive him
if they hear him or notice him dribbling.
His heart starts pounding and he feels dizzy. He tries to ignore the feelings but the
physical feelings just get worse.
John now starts to think that he may be having another stroke or heart attack and so
he rings his friends and tells them he’s not coming. A few minutes after cancelling
the meal (avoidant behaviour), John notices he has stopped sweating and his heart
is back to normal. John’s new thoughts are about being very down on him self and
believes he’s a ‘wimp’.
The physical feelings change again – now John feels flat and tired.

34
Since having your stroke, how often have you feared letting yourself down and
avoided taking part in activities that you used to enjoy?

Do you sometimes find that the strength of your physical response to stress feels awful?

Are these feelings are worse because of worrying and critical thoughts?

Are you avoiding doing things that give you pleasure?

If so it may feel as if you are living within a ‘vicious circle’ of feeling stuck like John in the
patient story you have just read.

We are going to work together to develop an individual shared understanding so you can
see how the physical feelings, thoughts, and behaviours affect each other.

Vicious circle – Feeling stuck

Physical
Behaviour feelings

Thoughts
– often
critical

Understanding your reactions and how you can makes some changes

Think of a time when you avoided doing things because you were feeling anxious or
worried?

Write down what happened to you.

Situation – e.g. where you were, who you were with…

…………………………………………………………………………………………………

…………………………………………………………………………………………………

…………………………………………………………………………………………………

35
Your physical response – e.g. heart racing, sweating, nausea …

…………………………………………………………………………………………………

…………………………………………………………………………………………………

…………………………………………………………………………………………………

Your self-critical thoughts at the time – e.g. I am going to show myself up by fainting…

…………………………………………………………………………………………………

…………………………………………………………………………………………………

…………………………………………………………………………………………………

What you avoided – e.g. going out with friends, leaving the house…

…………………………………………………………………………………………………

…………………………………………………………………………………………………

…………………………………………………………………………………………………

Now spend some time thinking about what you could change or do differently to help you
in this situation.

 Could you keep calm?

 Could you be less critical?

 Could you try out some different ways of reacting to the thoughts and physical
feelings?

 Would it help to use breathing, relaxation, mindful or compassionate friend techniques?

Week 6 Home Practice

 Continue to practice the relaxation and breathing exercises

 Notice when you become aware of your reactions to situations and use the exercise
‘Understanding your reactions and how you can makes some changes’ to work out how
you react and what you can do differently

 Read the next chapter

36
Weekly Questionnaires

6. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

37
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

38
39
Week 7 – Doing more can help you feel better and less tired

A natural reaction when we are unwell is to rest and generally do less, so it would seem to
make sense that if you are living with symptoms every day to avoid or do less physical
activity to avoid more severe or new symptoms such as breathlessness, pain, and
tiredness.

However, doing less can make you feel worse…

Jane’s Story
Jane is 69 years old who used to work as a librarian. She
woke up one morning experiencing left sided weakness. She
was admitted to hospital and diagnosed with a stroke. She
recovered well and discharged from the ward.

Two days later she called the GP because Jane’s feelings of


weakness worsened when she had tried to go for a gentle
walk. As this panicked Jane she stopped a whole range of activities that she used to
enjoy including walking her dog, dancing, and Yoga.

Three months later Jane was no better. She had put on weight, felt unhappy with
how she looked and became out of breath quickly so any attempts to return to any of
her old activities were unsuccessful. She felt embarrassed by how she looked in her
tracksuit and worried that the breathlessness might be to do with her heart or would
lead to another stroke. An ECG failed to reassure her enough to get back to even
walking the dog. Jane’s family noticed that she was upset easily and slowed down.
She went back to see her GP who said she was now depressed.

Jane relooked at her life and decided as a first step she would walk the dog just a
very short distance. She began to feel more confident and was able to reengage
with other activities and was much more active. At first, she felt tired and her unused
muscles felt achy, but learnt that by being more active she actually was able to
manage the weakness and breathing problems better, and begin to enjoy life again.

As you have seen in Jane’s example, doing less can make you feel weak and experience
symptoms such as breathlessness more quickly even in activities that never used to make
Jane feel this way.

Jane also discovered that some activities and behaviours helped to improve her physical
symptoms and well-being and enabled her to overcome the depression.

Remember: whenever any of us, with or without a physical condition, does an activity that
they are not used to or not done for a while, e.g. walking up the stairs instead of taking the
lift, they will become breathless.

Increasing helpful activities – Behavioural Activation


Increasing helpful activities can help to improve physical symptoms and overcome
depression.

40
To gain benefits from increasing activity levels we are going to work together to plan how
you can gradually change your day-to-day activity levels; this is called Behavioural
Activation (BA).

When using BA to increase helpful activities it is important to start gradually and aim for a
balance of activities that give you a sense of achievement, pleasure and are necessary.

Planning your activities


There are examples below, the sheets for you to complete are at the end of this
section.

1. On BA Worksheet 1 write down three activities you used to do in each category but no
longer do or do not do as often now, see the example below

Example: Behavioural Activation – Worksheet 1

Activities that give you a sense of achievement


Get dressed every day
Make lunch for me and my husband
Tidy the bookshelf
Activities that give you a sense of pleasure
Walk the dog
Coffee with my friend
Sudoku puzzles
Necessary activities
Make an appointment at the doctors to review my tablets
Phone my cousin
Look at better deals for electricity

2. On BA Worksheet 2 one section at a time, choose an activity and decide how easy or
difficult it would be for you to start doing that activity again.

For example, in the section ‘activities that give you a sense of achievement’ – ‘tidy the
bookshelf’ is the hardest for you to start again; ‘walk the dog’ is medium difficulty and
‘make lunch for me and my husband’ the easiest.

Do this now for the other two sections.

41
Example: Behavioural Activation – Worksheet 2

Hardest
Tidy the bookshelf
Coffee with my friend
Look at better deals for electricity
Medium Difficulty
Walk the dog
Get dressed every day
Phone my cousin
Easiest
Make an appointment at the doctors to review my
tablets
Make lunch for me and my husband
Sudoku puzzles

3. Using your BA Diary Sheet, plan the day and time that you want to do the activities
from your ‘easiest’ box and write them on your diary. Begin by planning activities for 2 or 3
days each week.

BA Diary Sheet – Example

Date: 2nd 3rd 4th 5th 6th 7th 8th


Time Mon Tues Wed Thur Fri Sat Sun
Morning

Lunch Make
lunch

Afternoon
Sudoku

Book GP
appoint
Evening

42
 Start slowly, plan to do something for 1-2 hours a day at first and then gradually
increase your activities over a number of weeks

 Avoid planning too much at first so you don’t feel overwhelmed, get overtired or
disappointed if you are unable to complete all of the activities

 Keep your diaries in an easily reached place so that you can monitor your progress

 If you find it too tiring or you are feeling particularly unwell, try to do something else or
allocate the activity you are unable to do to another day or time

 Treat each activity as if it was an appointment, you do it unless something significant


happens to prevent you

Exercise
We know that if we did not keep our car topped up with fuel, serviced and cared for it would
not work well, yet expect our bodies to work properly without paying attention to the things,
like exercise, that give us the best chance of staying well.

Information and booklets have been produced by The Stroke Association and The Mental
Health Foundation to highlight the benefits of exercise in helping people with a long-term
health condition and may also feel low or depressed, to feel better and stay well.

We know that exercise helps us to keep well physically, psychologically and improve our well-
being (Department of Health, 2009).

Some of the benefits of exercise include reduced breathlessness, improved energy levels,
and fewer days spent in hospital. Exercise also releases ‘feel-good’ chemicals into your brain
called endorphins and provide a distraction from depressing or worrying thoughts. It can help
you to feel more confident and if done with others, gain pleasure from social contact.

‘Exercise’ can be off-putting if it makes you think you have to join a gym or run around the
block, but can be anything from a short walk to gardening or dancing.

Here are some useful tips to help you exercise to stay well…
 Chose something you used to enjoy before your stroke, you are more
likely to continue

 Tai-Chi, Yoga and Pilates are particularly helpful

 Find out about exercise classes in your area from your local library,
notice boards in shops or GP surgery

 Aim to do some very gentle exercise for about 20 – 30 minutes, three to five times a
week, make it part of your weekly routine, you may find it helpful to plan it in your BA
Diary

 Make it gentle! The pace that is right for you will leave you slightly out of breath.

43
 Consider the time of day you exercise – too late in the evening can affect your sleep as
you will be more energised. Exercising in the morning can help to improve your sleep

 Exercise is good for you and forms part of a healthy lifestyle.

 Exercise doesn’t have to be expensive; it may be a cliché, but a brisk walk really won’t
cost you anything

Think about…

 What’s in you can do at home or in your local area


Country Park Sports Centre Golf Course

Swimming Chair-aerobics Aqua-aerobics Walking group

Walk down your garden Gardening Dancing Walking up stairs

Bowling Golf Tai-Chi Yoga Pilates

Home Practice

 Continue practising the relaxation and breathing exercises

 Use the BA worksheets to plan some activities to do this week, avoid over planning so
you don’t get overtired

 Read the next chapter ‘compassion’

 We will contact you before the next session to find out how you got on and to answer
your questions

44
Weekly Questionnaires

7. Patient Health Questionnaire (PHQ)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
PHQ-9 than half every
all days
the days day
1 Little interest or pleasure in doing things 0 1 2 3
2 Feeling down, depressed or hopeless 0 1 2 3
Trouble falling asleep or staying asleep or
3 0 1 2 3
sleeping too much
4 Feeling tired or having little energy 0 1 2 3
5 Poor appetite or overeating 0 1 2 3
Feeling bad about yourself, or that you are a
6 0 1 2 3
failure or have let yourself or your family down
Trouble concentrating on things, such as
7 0 1 2 3
reading the newspaper or watching television
Moving or speaking so slowly that other people
could have noticed?
8 Or the opposite — being so fidgety or restless 0 1 2 3
that you have been moving around a lot more
than usual
Thoughts that you would be better off
9 0 1 2 3
dead or of hurting yourself in some way
Total score

2. Generalised Anxiety Disorder Assessment (GAD)


Over the past week how often have you been bothered by any of the following?
Write the first answer that comes to mind without thinking about it too much.

More Nearly
Not at Several
GAD-7 than half every
all days
the days day
1 Feeling nervous, anxious or on edge 0 1 2 3
2 Not being able to stop or control worrying 0 1 2 3
3 Worrying too much about different things 0 1 2 3
4 Trouble relaxing 0 1 2 3
5 Being so restless that it is hard to sit still 0 1 2 3
6 Becoming easily annoyed or irritable 0 1 2 3
Feeling afraid as if something awful might
7 0 1 2 3
happen
Total score

45
3. Avoidance scales

Read each question then choose a number from the scale below that shows how much you are avoiding
each of the situations or objects.

Write the number in the box at the end of the question.

0 1 2 3 4 5 6 7 8

would slightly definitely markedly always


not avoid avoid it avoid it avoid it avoid it
it

Social situations due to a fear of being embarrassed or making a fool of myself

Certain situations because of a fear of having a panic attack or other distressing symptoms such
as loss of bladder control, vomiting or dizziness
Certain situations because of a fear of particular objects or activities such as animals, heights,
seeing blood, being in confined spaces, driving or flying

4. Work and Social Adjustment Scale (W&SAS)

Read each question and circle the number that describes how much your problem impairs
your ability to carry out the activity.

If you are retired, on maternity leave or choose not to have a job for reasons unrelated to
your problem, please tick here You do not need to answer question 1.

Work – Your ability to function in your current work role


0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely
I cannot work
Home management – cleaning, tidying, shopping, cooking, looking after home/children, paying
bills etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Social leisure activities – with other people, e.g. parties, pubs, outings, entertaining etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Private leisure activities – done alone, e.g. reading, gardening, sewing, hobbies, walking etc
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

Family and relationships – form and maintain close relationships with others including the people
I live with
0 1 2 3 4 5 6 7 8
Not at all Slightly Definitely Markedly Very severely

46
Worksheets – Activity Planning – example on p.17 & 18

Behavioural Activation – Worksheet 1

Activities that give you a sense of achievement




Activities that give you a sense of pleasure




Necessary activities


47
BEHAVIOURAL ACTIVATION – WORKSHEET 2

Hardest


Medium Difficulty


Easiest


48
/

Behavioural Activation Diary – Worksheet

Date:
Time Monday Tuesday Wednesday Thursday Friday Saturday Sunday
Morning

Lunch

Afternoon

Evening

Northamptonshire Healthcare NHS Foundation Trust – Pathfinder Project – Revised 8/12


/

Week 8 - Summary and review

Over the past few weeks you will have tried a number of different ways to help you to
manage living with your stroke, adapting to limitations you are experiencing and sharing
your own experience with others.

When we start to do new things they can soon be forgotten or put off especially when
we start to feel a bit better. It can help to have a plan to keep handy and use if you start
to feel distressed or are struggling.

Remember and practise the helpful steps you have learned over and over, and even
when you feel you can use them effectively, just carry on practising!

If you start learning to play a musical instrument, there's no point in just going along to your
lessons each week - you HAVE to practise repeatedly every day, in order to progress and
improve. You can be taught how to play, but you won't play any better without putting
the practice in. For the serious musician who puts in the practice, eventually, they learn to
play pieces of music competently. Some will go on to master their instrument.
©Copyright 2000-2010 GET.gg

Recovery plan adapted from GET.gg ©Copyright 2000-2010 GET.gg

1. I have learnt…

2. The most useful thing is…

3. The situations that can make me feel more vulnerable or distressed…

4. The signs and symptoms I notice if I start to feel distressed or am struggling…


In my body:

What I stop doing:

Things I do that are unhelpful:

Re-read this booklet and start to do the things you identified in answers 1 & 2

Northamptonshire Healthcare NHS Foundation Trust – Pathfinder Project – Revised 8/12


Clinical Global Impression Scale

Overall, how much do you feel you health has changed since the start of your therapy?
Please tick one box below the most closely corresponds to how you feel now.

Week 1 Week 2
Very much better 1 Very much better 1
Much better 2 Much better 2
A little better 3 A little better 3
No change 4 No change 4
A little worse 5 A little worse 5
Much worse 6 Much worse 6
Very much worse 7 Very much worse 7

Week 3 Week 4
Very much better 1 Very much better 1
Much better 2 Much better 2
A little better 3 A little better 3
No change 4 No change 4
A little worse 5 A little worse 5
Much worse 6 Much worse 6
Very much worse 7 Very much worse 7

Week 5 Week 6
Very much better 1
Very much better 1
Much better 2 Much better 2
A little better 3 A little better 3
No change 4 No change 4
A little worse 5 A little worse 5
Much worse 6 Much worse 6
Very much worse 7 Very much worse 7

Week 7 Week 8
Very much better 1 Very much better 1
Much better 2 Much better 2
A little better 3 A little better 3
No change 4 No change 4
A little worse 5 A little worse 5
Much worse 6 Much worse 6
Very much worse 7 Very much worse 7

51

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