I was diagnosed with acromegaly in 1987 and had transsphenoidal surgery in early 1988. This was followed by a six-week course of radiotherapy in 1992. I could not find much information about my condition – the internet did not exist and The Foundation had not been formed. I had to accept what I was told by the doctors relating to my condition and treatment.
When The Foundation started, it was truly wonderful to know that I was not alone with this condition and that I finally had access to information. I went to one of the first meetings held in Bristol and that was where I met another patient with acromegaly. We started talking and exchanging experiences and it was such a relief to talk to someone who understood my condition. We talked for ages and, I’m very pleased to say, that we still communicate with each other after all these years.
After finding this amazing organisation, I felt the need to participate in some way. At that first meeting, I volunteered to start a patient support group in Birmingham. My motivation to become a volunteer arose from my early experience after being diagnosed with a rare condition – lost in a wilderness of no information or understanding of my condition. I realised that I could to talk to newly-diagnosed patients and give them the benefit of my experiences – this would save everyone from having to learn the hard way like I did. The Birmingham group was (and still is) successful and I ran it for five years.
So what does my volunteer/ambassador role entail?
- I was a Helpline Operator for 14 years, talking to patients and carers about all aspects of pituitary conditions. I always found this role very satisfying and it was a good feeling to know that I had helped someone. It could be a demanding role at times when dealing with emotional patients and I think the experience has made me a more tolerant and understanding person.
- I’m a Telephone Buddy – this means I am available to talk on the phone about acromegaly with other patients.
- I am one of the proof readers for Pituitary Life magazine and the patient booklets.
- I have reasonable media skills and I’m sometimes called on to act as an expert patient for acromegaly. This can involve talking to healthcare professionals, drug companies, newspapers and researchers.
- My main volunteer role now is acting as an ambassador for The Foundation. This basically means promoting The Foundation at conferences, events, etc. The Foundation attends many endocrine events each year (such as the Endocrine Nurse Update, BES) and I man the display table at some of these events. I find these events very interesting and rewarding. I get to meet patients, nurses, endocrinologists, paramedics and my knowledge of pituitary disease is always growing.
Over the years, there have been many instances of knowing that I have really helped someone. I think the one I remember most was taking a call from a gentleman whose wife had acromegaly. I chatted to him for quite a while and he was relaying my comments to his wife – she wouldn’t talk to me because she was so upset. Eventually, I coaxed her into speaking to me and asked what was her main concern. Through her tears, she said that she had to wear wellingtons because she couldn’t find shoes large enough for her acromegalic feet. I chuckled and said that I could certainly help her with that and I would send her a list of suppliers of large-size shoes. Her husband came back on the line and said “I don’t know what you said to her but that’s the first time I’ve seen her smile in ages”. Ah, it’s the little things that often mean so much.
Volunteering is definitely important to all charities and for medical charities, the sharing of patient experiences is invaluable. Newly-diagnosed patients now have access to a mountain of information from the internet – perhaps too much! Nothing beats talking to a patient who has already walked the path you are just starting out on.
Volunteering can be extremely rewarding and it is up to you how far you get involved – whatever you choose to do, you can be assured that someone will be grateful.