F E AT U R E | P S YC H O L O G I C A L S U P P O R T
Feedback from the
WORDS Marianne Rawlins
“It was an emotional
rollercoaster”
The Living with Pain course at Harold Wood brought
people with limb loss together to share their emotions and
experiences. Psychological therapist Kim Lyons explains
why its success was all down to the ‘exceptional’ participants
F
or many people, the Serenity Prayer
is a source of comfort in times of
difficulty. But it was initially a source
of anger for a group of amputees
on the Living with Pain course at the
Harold Wood Treatment Centre. “They
hated it at first,” says Kim Lyons, one of
the psychological therapists who ran the
course. “They said it was condescending.
I was really surprised as I’d always found it
helpful. But it’s a good example of how we
were able to make room for their anger.”
Kim says the eight-session course was often
the first time that participants had been able
to talk at length about their experiences of
pain. “A lot of their pain had been internalised.
They’d stopped saying they were in pain – they
thought other people must be fed up of hearing
about it.” In contrast, everyone in the group got
The Serenity Prayer
God grant me the serenity
to accept the things I cannot
change; courage to change
the things I can; and wisdom
to know the difference.
24 | Autumn 2018 | StepForward
the time to tell their own ‘pain story’. “Initially they
were apprehensive,” says Kim, “However, after
telling their story in a ‘safe place’, they quickly
developed a strong bond. They realised they
were with people who understood their pain.”
The course was based on the Acceptance
and Commitment Therapy Pain Management
Manual, written by John Sorrell and John
Volwes, which Kim had used with other
patients but which had not been used with
amputees. “I discussed with our occupational
therapist Lindsey Barker how the course could
be adapted for amputees and got permission
from the authors. We wanted amputees to help
us shape the course for future patients, so we
invited six clients, and they agreed to
attend the group and review sessions.”
Psychoeducation, in which
patients are given information
At first, the
Serenity Prayer
was a surprising
source of
contention for
the group
and support to better understand and cope
with illness, was a big component. “We talked
about phantom pain and helped the group
understand that their pain is real,” says Kim.
“Some had been told it was all in their mind.
We explained how the brain processes pain.
Knowledge and the ability to act on it provided
the foundation for therapy. Also, learning about
pain biology reduces the ‘threat value’ of pain.
They could then take this information and
educate their family and friends.”
Short-term fixes
The group then talked about strategies they
had used to attempt to eliminate their pain. “We
looked at how much money, time and effort they
had spent and the strategies they had tried, such
as acupuncture, medication, hot baths etc. These
often worked in the short term but the clients
were still in pain. We aimed to shift the treatment
agenda from controlling pain to living with it.”
Cognitive behavioural therapy was employed
to help change the group’s thinking. “We
explored how, if a loved one said they were in
pain, they would say, ‘Put your feet up.’ Whereas
they would tell themselves, ‘I’m useless.’ They
realised that they wouldn’t say that to someone
else, so why say it to themselves? They started
to show themselves more compassion.”
The course also examined primary and
secondary pain. “Primary pain is the initial pain
an amputee feels, whether back pain, phantom
pain or other symptoms, whereas secondary
suffering might be worries about housing, jobs
or relationships. This can increase the volume
and intensity of the primary pain. We related
www.limbless-association.org
The group looked at strategies
they had used to deal with pain,
such as hot baths
Kim (back row, centre) and Lindsey
(second from left) with participants
on the Living with Pain course
this to the Buddhist proverb: ‘When an ordinary
person experiences painful bodily feelings they
worry, agonise and feel distraught. Then they
feel two types of pain, one physical and one
mental. It’s as if this person was pierced by an
arrow and then afterwards by a second arrow
and they experience the pain of two arrows.’”
Tested techniques
Recognising values was another important
element. “Values are what matters to us deep in
our heart, for example, being independent or
supportive to ourselves and others. After limb
loss, values may stay the same, but our goals
might need to be adapted. I used the example
of someone saying, ‘There’s no point in me
painting my fence because I used to do it in
a day; now it will take weeks.’ But when the
group broke the task down into realistic steps,
they saw that, although it might take longer,
they could still complete the task independently
and get a sense of achievement , too.”
The group then learnt about mindfulness.
“It’s like physical exercise,” says Kim: “You go to
the gym to increase the strength, stamina and
flexibility of the body. Mindfulness increases
these qualities in the mind. It teaches you to
www.limbless-association.org
P S YC H O L O G I C A L S U P P O R T | F E AT U R E
notice when your mind is in the
past or the future and when it is
not helping, for example, if you are
brooding or worrying. Mindfulness
helps bring your mind back to the
present, where you have control.”
The participants completed
psychological questionnaires before
and after the sessions, with the
post-course scores better across the
board. “Depression, anxiety and pain
had decreased, while mindfulness and activity
levels had increased,” says Kim. The cohort are
now shaping the course for future participants.
“They will help to develop it for fellow amputees
and we hope to start offering the course at
Harold Wood from the end of September.”
Kim and Lindsey are adamant that the course’s
success was down to the commitment and
enthusiasm of the group. “All of them completed
the sessions and no one dropped out, which is
very rare. They were an exceptional bunch. It was
an emotional rollercoaster; it brought up many
difficult feelings, but we also laughed till we cried.”
In the last session small gifts were given
to the group as a thank you, including some
arnica gel for pain relief, and, of course, a
laminated copy of the Serenity Prayer. “That did
make them laugh!” says Kim.
MORE INFO
Information on pain:
www.britishpainsociety.org
Pain toolkit: www.paintoolkit.org
Managing pain: www.noigroup.com
More on mindfulness: www.
breathworks-mindfulness.org.uk
Mindfulness app: insighttimer.com
StepForward | Autumn 2018 | 25
Living with Pain group
John Rushton
says: “The course
was amazing
– it was great
to understand
that I was not
alone. I was explaining the pain
I felt in my right arm stump and
Clifton said that his pain was the
same in his leg stump: that was
a ‘wow moment’. We also had
funny times. Kim was trying
mindfulness techniques and
the relaxation mantra she used
said: ‘Concentrate on how your
feet feel.’ I had mine amputated
in 2014 and shouted in a panicked
voice, ‘I can’t feel my feet!’ The
room burst out laughing!”
Clifton Henry
says: “It was a
real eye-opener
to discover how
many things we
had tried to get
rid of the pain. The pain is never
going to go away and the beauty
of this course is that it reduces it
by teaching you how to live with
it. Mindfulness helps as it takes
you out of yourself. When you
are stressed, you tense up and
feel more pain. When you’re not
fighting how you are feeling, you
let go and your pain is reduced.”
Tracy Ralph says:
“I have the perfect
example of how
the course helped
me. Recently, my
family and I went
on holiday to a busy resort in
Morocco. I was so nervous about
people seeing my new aqua legs,
which allow me to swim. On the
first day, I went back to the hotel
room and couldn’t stop crying.
My thoughts spiralled; I thought,
‘Why did I do this?’ Then, all of a
sudden, I thought, ‘Right, Tracy! If
you don’t try those aqua legs you
will go back home regretting it. So
I popped them on and went in the
pool – and it felt fantastic! I now
realise it’s okay to cry; it’s simply
the most effective way of moving
through your emotions. I’ve learnt
to allow myself time to process
each emotion as calmly and as
rationally as I can.”