A day in the life of the Head of Patient & Family Services

 

‘Helpline shift day’

Following my diagnosis and treatment in 1986, there was no information available, no-one to talk to who had a pituitary problem - literally eight years of ‘pituitary isolation’. This all changed for me and other patients when The Foundation launched and I became a volunteer from 1996 and I was privileged to become a staff member in 1999. 

Hands Typing 7

Time to get up! I take my thyroxin, have breakfast, take my hydrocortisone, wash up, and have a quick tidy round.

By 8:30, I’m at my desk with a coffee, checking my list for today and the emails from last night which I start to reply to. The Helpline emails for The Foundation, are received and answered to, by me and my colleague, Sammy. They can be quite varied. As an example, one patient is concerned about shortages of their medication and asks if we can find out what’s happening (which I am able to do within half an hour and reply). Another email is from a mother looking for appropriate travel insurance for her young daughter, who has hypopituitarism; I paste details of the travel insurance companies from our website into my reply to her.

Sammy and I reply to an average of 90 emails a month –some can take a few minutes, whilst others can take longer, finding the right information and answering their return questions.  I look at the member’s forum and our Facebook page, as I do every day and reply to any queries I feel I can help with.

I’m currently editing and compiling the content for the next edition of Pituitary Life magazine. Compiling and editing content can take a good number of hours, and I break off from this intermittently to take several calls from other staff or patients. It’s now 10:40am and I make another coffee. I need my desmopressin as I can feel ‘breakthrough’ starting! Several bottles of water always sit on my desk. Oddly, if I speak to a caller who has DI, I feel quite thirsty– even if I’ve taken my dose of desmo!

Back to editing the magazine and it’s coming together well. I have a catch up with Menai, to talk about the content and other tasks. As I’m on the Helpline this afternoon, I have a quick bite to eat (often at my desk), so that I’m ready to take over calls from 1:00pm.

The Helpline shifts are tremendously satisfying and I hope that I can make some difference. Calls, like Helpline emails are varied and you never know what a call will be about or who it’s from. A call can be from a patient who has just been told ‘you have a tumour’. They will be naturally, very upset. We Helpline operators are used to supporting just diagnosed patients to help them feel more reassured; we offer appropriate booklets to send to them, their nearest Local Support Group details, a Telephone Buddy to talk to and of course offer that they can call us back. The ‘just diagnosed’ calls never cease to move me – I will never forget how it feels to hear those words. 

I speak to my colleague Rosa about the plans for our Pituitary Conference this year. We work to a schedule of content and deadlines for this; it takes many months of work to put a conference together, making sure that our delegates have the best possible experience.

At 3:00pm another call comes through; the caller wants to know the name of an endocrinologist and I use our list of endocrinology clinic’s to help the patient discuss with their GP options for who to be referred to. The patient then talks about their journey through a lengthy diagnosis and how this has impacted on their family and employment. Calls can vary in length too - some are short, for brief requests whilst others can last almost an hour. The length of the call doesn’t matter, but the help we offer does.

At 3:40pm I’m off the phone, quickly make myself a cup of tea (have a piece of dark chocolate with my name on!) and continue editing content. The Helpline has closed at 4:00pm but Helpline emails continue to come in, which Sammy or I answer, or we note to look up the information they need. For medical request emails, I have access to our medical committee who will always help me to respond with appropriate information.

4:20pm: I need to start checking our stock list of booklets to see the priority of the next several booklets to be reviewed. I also have to proof two booklets I’ve been updating which are back from the designer. I contact the printer for a quote, giving amounts we need to print and when we can expect these in stock.

There are a dozen stages to go through to process a Foundation information booklet, from the original need of updating and re-printing the booklet, to finally reaching our shelves as available stock in National Support Office. Each booklet must be reviewed by patients and our medical committee (if there are medical updates needed), forms for all stages completed and filed to meet our publications process guidelines.

A call comes through at 4:55pm on my direct line. The caller hasn’t been diagnosed but is concerned about recent blood tests and what the possible results mean they may have. The caller talks through the symptoms they have been experiencing and sound less anxious now. I offer the caller our Specialist Endocrine Nurse, Alison’s number and times that she is available. I reassure the caller that Alison will help them with their blood test results.

Its 5:15pm. I make notes for tomorrow’s ‘to do’ list, close the computer and head off to do some shopping (sometimes a brisk walk too) and home to get dinner ready. I take my last daily hormones around 10:00pm, watch a bit of TV whilst browsing through today’s newspaper. Tomorrow will be another busy but always a greatly satisfying and fulfilling day!