In 2017, The NET Patient Foundation (NPF) set up a unique specialist Psychological Counselling Service, in response to finding that 50% of NEN patients had psychological care needs that were not being met (INCA Stakeholder Survey 2017). Many NEN patients tend to ‘live with’ their condition over several years (rather than conform to a more typical ‘treatment plus recovery/decline model’) and thus require psychological flexibility and endurance over time.
Clients were asked to complete an anonymous online feedback survey at the end of sessions. Data on presenting and emerging issues were collected by counsellors at commencement, and upon completion. In its first 12 months, 25 clients were seen for an average of 7.4 sessions each.
NEN patients can suffer additional anxiety due to the unpredictability of distressing symptoms and prognosis uncertainty and low confidence in HCP’s. The psychological ‘toll’ of these can corrode pre-existing coping mechanisms over time. Findings supported evidence of suicidality from the Genetic Alliance Report 2018 ‘Living with Rare Condition’, in that 20% of NPF clients disclosed suicidal thoughts. Fears for the future (81%) anxiety (92 %) depression and low mood (88%) grief and loss (84%) anger (75%) and managing symptoms or treatment (82%) were key features of sessions. Dealing with diagnosis (71%), was a significant issue not just for those newly diagnosed, but also following periods of stability, where patients were processing the emotional impact of their condition either again, or for the ‘first’ time. Anger was an important common emotion to be expressed (75%).
The findings indicate a need for greater awareness of, and access to support for, the particular psychological burden upon NEN patients and families who live with this rare condition; the impact of diagnosis not just initially but over time, and greater training and support for all HCP’s working with them. Also requiring further research is the notable 67% of patients who reported either improved emotional tolerance of difficult physical symptoms, or a decline in intensity of them, over the course of the counselling sessions.
Clinical trial identification
Legal entity responsible for the study
The NET Patient Foundation.
Has not received any funding.
All authors have declared no conflicts of interest.