Presentation by Faith Gibson, Co-Chair of the NCSI steering group and Charlotte hails, survivor/patient representative

1. The Impact of New Pathways
on Our Aftercare: Patients’
Perspectives
Faith Gibson, Co-Chair of the NCSI steering group
Charlotte Hails, Survivor/Patient Representative
And on behalf of Alex Brownsdon, Ryan Bishop,
Tom Barber and James Ashton

3. The NCSI CYP Workstream:
Listening to Patients Throughout
CLIC Sargent Talking Cancer Day (2008)
CLIC Sargent Survivors’ Conference (2008)
Workshops/Focus Groups at Test Sites (2008-2011)
‘The Impact of Cancer on a Child’s World’ (CLIC
Sargent, 2010)
‘More Than My Illness’ Survey (CLIC Sargent, 2010)
‘The Way Forward: Is it Right for You?’ workshop
(2011)

5. Treatment Summaries and Care Plans (1)
If you’ve had cancer when
you’ve been a child, if you
see a different doctor
that’s not one you
regularly see, and they
ask you a question, you
don’t know what chemos
or dosage you had, so
then it’s like, ‘Erm Mum!’
To save me
explaining to
doctors my
medical history

6. Treatment Summaries and Care Plans (2)
Knowing what to
expect takes out
some of the worry
It would be
good to have
something you
can take with
you when you
move Being appropriately informed
could…promote the
opportunity for choice and
control in a situation where
there has been very little

8. Supported Self Management
I understand the side
effects my treatment
may cause in the
future
You can’t self
manage if you don’t
understand
Supported self-
management
provides a positive
approach to long-
term aftercare

9. Conclusions from the Workshop

10. Transition
You need to know
how the stuff in your
past is going to affect
you
When you’re
applying for a job,
you obviously
have to say
something, but it’s
how muchThat strikes me more and more
how really important [it] is that
everybody gets that transition
and then knows what to ask in it
as well as what to get.
Otherwise you’re left not sure.

11. ependence
A Final Word
The fundamental benefit that the new pathways
will provide for survivors of childhood cancer is
the provision of better information: about what
has happened to us and what will happen to us,
about how our illnesses may affect other
aspects of our lives and about how we can look
after ourselves. This knowledge is empowering.
We will become active participants in a system
that recognises us as people, not just as
patients.