Living with and beyond cancer: The improvement story so far - NHS ...

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44 | Living with and beyond cancer: The improvement story so far Learning so far Recruitment issues • The first programme only had four attendees, all of whom were women despite the course offering 10 places for men or women. The clinical nurse specialists found it challenging to identify and recruit patients for the programme, compounded by a recruitment window initially specified as being between three to six months after the end of treatment. After consideration with the clinical teams it was decided that increasing the recruitment window to a period from three to 12 months after the end of treatment as attendees will still benefit and this will also increase the likelihood of recruiting 10 patients to subsequent courses • An additional ‘self referral’ recruitment path has also been approved by the ethics committee as an amendment. Posters and leaflets have been developed to be distributed to clinics, cancer information centres and day units; these will inform potential participants about the programme thus adding the option of self referral. • One outcome from these discussions is that some of those attending found practicing ‘mindfulness’ proved difficult outside of the sessions. As a result a CD is being developed for the next cohort to use as an additional tool. Next steps • The second run of the programme is underway and being held in Sunderland Library and Arts Centre for eight weeks • Recruitment for a third course is beginning following further financial support from the cancer network to support the testing locally. Contact Sarah Rushbrooke Nurse Director, North of England Cancer Network sarah.rushbrooke@sotw.nhs.uk Programme development • It was recognised that capturing the facilitators’ discussions and reflections was important in optimising the learning to be gained. Thus facilitators began keeping a diary after each session to document shared reflections, ongoing developments in the programme and reasons for changes
Living with and beyond cancer: The improvement story so far | 45 University College London Hospitals (UCLH) Gynaecological Cancer Centre Routine use of the distress thermometer as psychological distress screening for outpatient gynaecological cancer patients Summary The survivorship project at UCLH is exploring whether the combination of prophylactic and early physical and psychological intervention improves quality of life for patients treated for gynaecological cancers. The work has focused on the use of the Distress Thermometer (DT) at each outpatient appointment differing from other models of practice where it is used only at pre-defined points in the patient journey. The use of the DT as a rapid screening instrument for psychological distress has been shown to be valid against other commonly used screening tools and acceptable to patients. The aim of routine use is to improve the quality of the medical interview, by signalling to the patient that the doctor is willing to discuss the wider range of their experience beyond the strictly physical; by offering prompts to patients to disclose physical symptoms that may otherwise not be disclosed (e.g. sexual difficulties); to offer patients the opportunity to talk about their difficulties in the consultation and/or to direct those with wider difficulties to the appropriate area for help e.g. clinical nurse specialist (CNS), clinical psychologist, community teams etc. The problem After an enthusiastic beginning, welcomed by CNSs and commented on by patients as making them feel valued as a whole person, it was found that over time patients were completing the DT less often. The initial use by junior staff ended when their rotations changed, and senior staff felt that they were covering the physical content in their regular interviews. New junior staff were not trained on entry to the rotation and the knowledge gained by earlier SpRs was not passed on. This led to the perception amongst some clinicians that the DT was psychosocial in essence and outside their sphere of expertise. A survey was conducted of 24 patients’ views on the use of the DT and the following was identified: • Patients were unaware of the aim of the DT and why it was used on multiple occasions • 67% said that the concerns they had noted on their distress thermometer had not been discussed in the consultation, and of these 79% had concerns they had hoped to discuss with the doctor • Of those who had the opportunity to discuss their concerns, all found it useful. What was done An education package was developed for clinical teams to explain the DT, how the process works and can benefit the doctor and patient. The MDT coordinator produced a highly successful ‘how-to’ guide for doctors. The process was reviewed and now all patients attending clinic are given the DT to complete prior to seeing the doctor. For patients where the score is 5 or more, the consultant will open a discussion in clinic with onward referral where necessary. The DT score is entered in the MDT record if five or over as a ‘case’, the paper copy is collected, and the data entered manually into a database by the assistant psychologist, together with outcomes and next steps. The patient leaflet explaining the DT has been reviewed and amended. An electronic version of the DT linked directly to a database to reduce manual data entry and associated transcription errors is now under development. Following training, the DT was relaunched as a four week pilot focusing initially on surgical patients seen in the gynaecological oncology clinic. What difference has the testing work made • The consultation discussion has changed. Doctors report patients talking to them about previously undisclosed problems, e.g. about physical and emotional late effects of treatment in patients who are otherwise ‘doing well’ • It enables earlier identification of physical or psychological needs e.g. post treatment distress about infertility • Continuous monitoring of DT scores helps prevent unrecognised development of serious problems, such as anxiety, depression or major social issues • Routine screening means that issues can be addressed when ‘hot’ rather than waiting for moment when decided by the healthcare professional. The consultant takes an active role in addressing all the patient’s issues, a role traditionally played by the CNS.
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