CNS focus group

The Royal Marsden
Findings of the CNS telephone
access review to improve the
Dr Natalie Pattison
Senior Clinical Nursing Research Fellow
Jen Watson
DND Cancer Services
The Royal Marsden
– Importance of CNS care in cancer care noted
nationally by Sean Duffy (NHS, 2013)
– The NCPES outlined a (statistical) difference to
patient experiences if they had a CNS in:
– Information provision about cancer (74% v 49%)
– Choice of treatment (87% v 67%)
– Information provision about side effects (85% v
– Rating of care excellent/good (90% v 77%)
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– For a number of years the CNS teams have been less
accessible in terms of telephone accessibility than
other clinical professional groups, when measured by
the National Cancer Patients Survey (2012).
– Imperial, RM, UCL, GSTT, The Christie all performed
badly in terms of contact ease of contact with CNS
– CNS caseload is frequently up to 400 pts/per CNS (A
maximum of 150 has been recommended. NHS CNS
Census, 2011)
– We know that the pathway for access is not as
coherent and cohesive as it could be.
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Focus Group Methodology
– Decided we needed to engage patients in what we
could do to address our weaknesses
– Wished to gain a range of perspectives
– Focus groups are particularly useful in qualitative
research when exploring knowledge, experience and
perceptions; used to not only determine what people
think but also why they think it. The group
interaction can provide information that one-to-one
interviews do not always uncover (Kitzinger, 1994).
– The group is a purposive but not necessarily
representative sample of a specific population, this
group being ‘focused’ on a given topic (Thomas,
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– Can get really rich data from a wide range of views on
the topic of interest
– Explore and elucidate their ideas in a way that is
not possible in a one to one interaction (Kitzinger,
1995, Macleod-Clark et al, 1996)
– Giving an elevated level of face validity as any
comments made can be confirmed, reinforced or
contradicted by the group (Kitzinger, 1995; Krueger,
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– Provide a good introduction with framework for the
topic under discussion
– Give clear ground rules: confidentiality; turn-taking,
respect for opinions
– Group dynamics
– Informed consent
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– Wrote a protocol for undertaking the focus groups.
Sought approval via trust R&D department who sent
it out for peer review as Service Evaluation (as per
NRES guidance).
– R&D Approval obtained.
– Recruited via poster adverts over a three week period.
– Also advertised via an email flyer to the FT
membership list
– First tried to undertake a focus group in Chelsea,
advertising less successful, so tried again in Sutton
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– Sample: Seven patients (6 women and 1 man)
attended from different tumour groups including
lung, breast, colorectal. Some were still in treatment
and some were on follow-up and some had been
discharged from RM care.
– Informed written consent was taken, with all
participants having received written information
prior to the event.
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1. Experience of contact
– Participants’ experiences of contacting CNSs was
varied with exemplars in certain areas, like breast
(while on active treatment) being good. However,
contact with lung CNS problematic and patient felt
unsupported, although helpful when person could
make contact.
– We talked about how people contacted their CNS and
some used email, and some tried over the phone.
Email was universally considered a good option for
non-critical issues.
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1. Experience of contact
– Some patients had no problem leaving phone messages, as they
knew someone would return their call. It was felt that the CNSs
always returned calls, but this could sometimes be late in the
a relationship
a for
day, sometimes
too late
after the issue had passed.
other person
patients, using
was hard,
they felt
it was difficult
to articulate their concerns to an answerphone, especially when
their history
poorly. Sometimes
the CNS they
to would
be unknown,
part of the team rather than the keyworker.
– Embarrassment about calling also expressed when it was about
a perceived trivial matter
such as appointment. Some used the
website (the younger patients) and thought it was quite helpful.
– Some patients on long-term follow-up talked about how they
didn’t know when personnel changed, or their keyworker left or
on maternity leave.
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2. Ease of contact
– For those who had entered open access follow-up that
was not without problems, although patients would
understand the process, it did sometimes leave people
feeling unsupported and unsure where to turn with
small niggles or concerns, with questions like: ‘does
this pain mean I have recurrence?’.
– It was felt that direct dial numbers were preferable.
– However, there was a suggestion: ‘could switch board
signpost people?’
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3. Facilitating contact
– In terms of what could be done to facilitate contact
with the CNS. It was felt that giving more time before
to explain treatment might allay later fears and
– Finishing treatment was considered scary and
stopping follow-up worse, having to go back to GPs
caused lots of anxieties, particularly if there was
history in terms of delayed diagnosis as a result of the
GP’s previous intervention.
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3. Facilitating contact
– Need more information on symptoms; at end of
treatment need to signpost what happens and who to
contact really clearly.
– Technology was discussed with many accessing
cancer charities patients’ forums for support and
concerns, issues of moderation and professional
advice in relation to this was discussed.
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3. Facilitating contact
– We talked about having a volunteer to triage calls and
this was met with a good reception, assuming safety
procedures followed. Someone else also asked about
finding out the volume of calls to particular CNS
groups and if this might help inform service
– Participants recognised that CNS was just one part of
a bigger picture and recognised the limitations on
their time. A robust access procedure needs to be in
place. Signposting to resources for support needs to
take place as well.
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– Plan to trial CNS administrative support from
September 2014.
– A standardised tool (to work within existing
electronic patient records) to evaluate
caseload and workload will be used, with a
gap analysis to look at CNS capacity and
workforce planning.
– Switchboard to trial a new process by using
site practitioners (senior nurses) to
appropriately signpost patients.
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Change Presentation title and date in Footer
– Updated CNS directory (with photos and increased
contact details).
– Revision of trust website to make it easier for patients
to navigate to CNS.
– Develop smartphone applications for supportive care
and information (digital company/provider contacted
to jointly work on bespoke apps).
– A CNS staffing review is underway and due to be
reported on September 2014.
– Undertake a second raft of patient focus groups in
early 2015 to evaluate how these have impacted on
CNS access.
Thank you
[email protected]

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