Patient Care Survey 2021: Actions for Endocrine Specialist Nurses

Our patient care survey was launched in August 2021. A total of 982 completed this, with 700 providing free text comment. 98% had received NHS endocrine care in the past 3 years.

What does the survey mean for endocrine nurses?

The startling results highlight some significant issues in the systems that patients navigate. Amongst examples of good, there are many examples where care has fallen below a standard that should be expected, with potentially life-threatening consequences.

In longer term care of patients, 67% had problems accessing an endocrine consultant or team, however accessing Endocrine nurses was easier, with only 34% having problems accessing a nurse.

Regarding routine follow up appointments, 72% felt that the endocrinologist leading their care understood their condition fully. 28% felt that the endocrinologist did not. The communication between patient and doctor is especially concerning.

Similarly, there is a significant lack of communication around hydrocortisone, with around 40% of patients not receiving information; leading to patients not understanding sick day rules, and prompting of adrenal crises, again with hospital admissions.


This report summarises the findings of the survey, and gives us a clear call to action with three steps we can all take:

  • to raise awareness and increase education around of Pituitary conditions
  • to focus on communicating with patients and
  • to signpost the support that charities can offer patients.

Professor of Endocrinology and Consultant Endocrinologist John Newell-Price, Chair of The Pituitary Foundation medical committee, underlines this, saying:

“This is an urgent call to arms for all of us working in Endocrinology. The Pituitary Foundation, in conversation with NHS health care staff, has outlined three simple steps which we can all take to health-check our services to patients and improve communication.”

We believe that patient care can be dramatically improved through increased awareness, education and communication. All healthcare settings are encouraged to consider how they could health-check their settings against these steps.

We will work with peers and partners to achieve a positive outcome for patients. In particular, we are collaborating with the Society for Endocrinology’s Future of Endocrinology working group, with whom we share common aims and outcomes

Endocrine nurses are a fundamental part of a patient’s journey, and we urge you to consider how you can achieve these three steps of raising awareness, increasing patient communication and signposting the service of charities.

Some ideas that you might want to consider are:

  • Reflecting on how well known your service as an endocrine nurse is to patients (we often hear that patients are unaware of the specialist nurses).
  • Reviewing how patient education is delivered (for example, around sick day rules which many survey respondents were unaware of)
  • Delivering an information session for general ward nurses on adrenal insufficiency and diabetes insipidus (survey respondents noted their anxiety in attending non-endocrine wards because of a lack of understanding of their condition and care)
  • Reviewing how patients are signposted to charities’ support.

We have a range of resources at The Pituitary Foundation that you can draw on, including information leaflets for patients, a free nurse Helpline and local patient led support groups. Please do get in touch with any questions, and we look forward to working with you to support patients!

Read the full report here and read the full introduction to the report here.