I became a volunteer with The Pituitary Foundation 2 years ago when they were looking for Helpline Operators for the Support Helpline. It came at just the right time for me. The Foundation had been a huge support to me for the previous 10 years while dealing with my own pituitary condition, Acromegaly. Despite surgery, medication and radiotherapy I was still producing too much growth hormone. Eventually the pain and fatigue became so debilitating that I virtually ground to a halt. I stopped working, became very inactive and stopped socialising. I felt useless. It was only when I started another medication, Pegvisomant, that I began to feel much better and started looking for things to do.
Becoming a Volunteer
First, I joined a soul choir. I’d never done anything like that before, but it lit a spark in me. Before long I was volunteering at the choir, making friends and my confidence was returning. I wanted to do more, so when the Foundation were looking for Helpline Operators it seemed ideal. I was eager to help people with pituitary conditions, put my knowledge and experience to good use, and give something back.
I had been a Careers Adviser previously, and had experience in management, HR and training. I thought my communication skills, although a bit rusty, and experience of working with a wide range of people, would be useful. After I applied, Sammy, who looks after the helpline volunteers, phoned me a few times to discuss the role and take me through some training resources. I felt very comfortable and well supported, so it was time to start taking calls!
I was pretty nervous waiting for my first call. Pituitary conditions are numerous and varied. I couldn’t have been more thankful when my first caller had suspected Acromegaly, same as me! I felt on pretty firm ground helping her understand the diagnosis process and giving reassurance about the range of information and support available. After my first few shifts, Sammy would call to see how things had gone. She is always so encouraging and the support for volunteers from the Foundation is excellent.
Getting into a Routine
I do a regular 3-hour shift once a week, from my kitchen table, taking on average 2-3 calls. Calls can be from patients, family, carers or medics; from teenagers to octogenarians. A wide range of topics can arise including medical, financial, emotional, employment and relationships. Most calls take 20-30 minutes but can be longer. I never like to rush anyone. People often phone with a specific query but once you start talking, they appreciate being able to speak to someone who understands and can relate to their situation. This can end up helping the caller in ways they hadn’t even contemplated.
Some callers have unexplained symptoms, struggling to get a diagnosis. Others are taken unaware by a sudden diagnosis and are quite overwhelmed. Some callers are coming to terms with long-term physical, psychological and emotional effects of their condition, or the consequences of surgery or having to take lifelong replacement hormones.
The main part of the role is to listen and then to let the caller know how you might be able to help. This is made a lot easier by the large range of resources and support available from the Foundation, but it also means callers sometimes need help finding what is the right thing for them and their situation. It might be signposting them to relevant information on the website, letting them know about local support groups, offering a buddy for more ongoing support, telling them about online forums, or referring them to our specialist Endocrine Nurse Helpline. It all helps people feel better informed, less alone, more prepared and better supported to manage their situation.
Not just patients
One thing that surprised me is the number of calls that don’t come from patients, but from others: parents, partners, carers. They want to understand pituitary conditions so they can offer better support. These can be some of the most moving calls. For example, helping a parent who’s just learned their child has a pituitary tumour to understand more about the condition, reassure them about the support available, and even help form a plan of how to talk to their child about it.
Another call, from the manager of a care home, made me realise how important we can be in helping the most vulnerable people get the care they need. I was touched by the fact he’d phoned to find out how to support his resident to improve her quality of life. It’s also not unusual to get calls from partners. Sometimes they need support for themselves, as well as trying to help the person with the pituitary condition. This has given me an added insight into how my condition has impacted my own husband and family.
There’s also some admin (naturally): emailing the office about calls received and action taken, arranging for information to be sent to callers, keeping up to date with new articles on the website and sometimes following up specific enquiries.
Why I Volunteer
Whatever the call, being able to help someone navigate their way through their own pituitary journey, is hugely rewarding. Volunteering gives me the sense of purpose I was looking for, and the opportunity to use the skills and attributes I have to benefit a community, and an organisation, I am passionate about. Callers often say they can’t believe the support the Pituitary Foundation provides. I think I learn as much from callers as they learn from me. I just love it when someone finishes a call telling me how much more positive they feel about their situation. I sometimes even have to pass them on to the office because they want to make a donation!!