Pauline's Blog: An insight into our Nurse Helpline

Our Endocrine Nurse, Pauline, has been running our helpline for just over a year. The helpline is always very busy and questions can be complex. Here she shares an insight into the kinds of calls she has received over the last 3 months. We have also shared a more detailed version with Endocrine Professionals to outline some of the FAQs so they can use it to improve their services

I took up the post of Foundation Endocrine Nurse in late 2018, following a long career in the NHS as Endocrine Specialist Nurse. I’d known about the charity since its inception 25yrs ago and routinely signposted my patients to it for support. Many found a great benefit in having a connection with others living through the same issues as themselves.

Coming in to post I had really no idea of the complexity of calls I would face on each helpline session. I thought it would be predominantly a supportive role, maybe explaining some medical terms, helping understanding of blood test and scan results and signposting for further help or advice.

The reality has been quite a revelation.

In the 12hrs of active line per week I can routinely answer 25+ calls, and miss just as many whilst answering them.

The complexity of some calls has been startling and the overall, the patient reported sense of isolation and lack of contact with Endocrine teams disappointing.

My role is to provide advice and support to patients diagnosed with pituitary disease. However, calls are from patients with concerns covering all aspects of Endocrine disease- thank goodness for my time in the NHS.

Figures for the last 3 months show 192 call answered.  554 calls were missed, this number is a record of all attempted calls, many callers attempt contact multiple times whilst I am on other calls, so this does not truly reflect the number of people unable to make contact, only the attempts made.

I’ve also answered 30 clinical emails. These come in to our general helpline and any with clinical content needing a reply are forwarded to me for a response

Here are some of the general themes I’ve had calls for over the past 3 months:

Adrenal insufficiency –  I routinely have 6-8 calls per week about this. Generally from patients who have a history of steroid use for asthma/rheumatoid conditions. I take time to explain the mechanism of adrenal suppression and the potential for recovery. I try to ensure I discuss the ‘sick day’ rules and this will often result in a response of  ‘I didn’t realise I had to do that’. This information is important in helping to keep those taking steroid replacements safe during times of significant illness and extreme stress.

Post pituitary surgery –  the expectations around recovery time vary greatly patient to patient,  and I’ve now learned centre to centre. Cushing’s patient are not always prepared for the experience of an incredible low fairly soon post operatively and this can be very distressing for them. Those having undergone surgery for Acromegaly may be disappointed their initial post-operative symptom regression falters several months later. Many patients are disappointed to find themselves needing hormone replacements post operatively and younger patients, particularly female worry about fertility.

Our awareness campaign for this year is Cushing’s and there has been a significant increase in the number of calls around this. Most are detailing problems in getting a diagnosis as often GP’s will not consider this a potential diagnosis for someone struggling with ongoing weight gain, hypertension and diabetes mellitus. Diagnosing Cushing’s is often a long and difficult process and a lot of support is needed, both physically and mentally, as sufferers go through this process.