Pauline's Blog: An insight into our Nurse Helpline
In mid-2019 I began collating a few examples of calls into our Nurse Helpline over the preceding 3 months. Here I present a brief look at some of the issues raised over the 3 months November to January.
The complexity of calls continues as does the overall, patient reported sense of isolation and lack of contact with endocrine teams.
My role is to provide advice and support to patients diagnosed with pituitary disease. As before however calls are from patients with concerns covering all aspects of endocrine disease.
Figures for the last 3 months show 143 calls answered, this is down on the last 3 months due to time out for BES and Christmas. 182 calls were missed, and only 4 clinical emails needed input and a response from me.
General themes of calls over the past 3 months:
I’ve had several newly diagnosed patients contacting for advice and support. Some just needing clarification of the medical terms being used in their appointments and letters and others needing more in-depth support and education around the replacement therapies they have been given.
Cortisol replacement is always a strong feature of the calls received day to day. This quarter there have been supply difficulties with the hydrocortisone injection so patients have been provided with Solu-Cortef. They have needed education on how to mix the injection should it be needed. I’ve found signposting to both Pituitary Foundation and Addison’s Disease websites useful for this as both have detailed information sheets demonstrating the technique.
There have also been several calls from patients worried that their GP limits the amount of hydrocortisone they are prescribed. This is especially difficult for some who have had repeated infections and have needed to increase their dose to cover this. Some GP’s have even suggested patients may be ready to stop hydrocortisone as they have been prescribed it for a long time. I have emphasised to these patients the need for ongoing treatment as indicated by their endocrine teams and for the need to hold an extra supply at home to cover intercurrent illness should it occur.
Suspected Cushing’s diagnosis has continued to bring in a good number of calls, with 2 patients having been confirmed recently, albeit one has an adrenal adenoma so not pituitary but very badly affected by the disease.