Findings of the CNS telephone access review to improve the pathway

1. Findings of the CNS telephone access review to improve the pathway Dr Natalie Pattison Senior Clinical Nursing Research Fellow Jen Watson DND Cancer Services

2. Background • 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 61%) • Rating of care excellent/good (90% v 77%)

3. Background • 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 (61-69%). • 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.

4. 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, 1995).

5. Advantages • 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, 1994)

6. Ethics • 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

7. Process • 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

8. Sample • 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.

9. 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.

10. 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 day, sometimes too late after the issue had passed. Also, for other patients, using messages was hard, they felt it was difficult to articulate their concerns to an answerphone, especially when poorly. Sometimes the CNS they spoke 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. “Having a relationship with a person means you know them, their history and they can understand any changes, new concerns.”

11. 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?’

12. 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 concerns. • 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.

13. 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.

14. 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 provision. • 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.

15. Actions/Recommendations • 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.

16. Change Presentation title and date in Footer dd.mm.yyyy Actions/Recommendations • 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 natalie.pattison@nhs.net