Get peer support
Would you like to speak with another patient with the same condition as you? Maybe you're a carer or a parent and would like to be put in touch with others that share similar experiences to you?
Our peer support telephone buddies and email service is here for you. We have trained volunteers who are here to:
- offer practical tips
- share their own experiences
- give you encouragement
- support you in making informed decisions.
Who are the telephone and email buddies?
They can be a patient, a carer, a parent or even a family member. See the below information for details on what our buddies are willing to discuss.
If they are a patient, what condition do they have?
The vast majority of pituitary conditions are represented amongst our volunteer telephone buddies. Examples include: Diabetes Insipidus, Acromegaly, Cushing's, non-functioning tumour, hypopituitarism and some of the rarer disorders also.
How can I be put in touch with someone?
Please contact us on firstname.lastname@example.org or 0117 370 1320 first of all to tell us what you’d like to talk about and we’ll do our best to find the right volunteer for you from the below list (we hold further details on what they are willing to discuss and their contact information).
Buddies have certain times they prefer to be contacted that need to be adhered to, they are there to support a caller for several calls but should not be used as an ongoing support service for more than a few months.
Please note that if they weren't available when you called, please don't leave a message as our Telephone Buddies don't make calls, but do try them again.
Meet our telephone buddies:
- Mark: who can discuss all pituitary conditions as he is a patient and a retired GP. He can also discuss osteoporosis; psychological & emotional aspects; sexual aspects; meningitis; and returning to work.
- Annie, Steve and Eric are all Acromegaly patients and happy to talk to anyone who wants support or who has questions about living with Acromegaly. Chloe is in her twenties and has Acromegaly and Prolactinoma, she is happy to discuss issues relating to younger patients too.
- David has Craniopharyngioma and is willing to discuss his condition alongside medication, surgery and other common symptoms.
- Amy, Sue, Dawn & Heather all have Cushings and are all from different age groups. They are willing to discuss associated symptoms including weight, low mood, fatigue and appearance.
- Joy, Frances and Theresa are all Hypopituitarism patients. Willing to chat about treatments, medications, mental well being, and also Diabetes Insipidus which also affects them.
- Hannah has Hypopituitarism as well as Adult Growth Hormone Deficiency, Adrenal Insufficiency & Hypothyroidism. Happy to discuss all aspects of this, in particular her experiences with infertility.
- Ian has Hypopituitarism as well as Adrenal Insufficiency and Diabetes Insipidus. He is also available to speak to about any Covid-19 concerns and how this may affect conditions, as he recently experienced this himself.
- Fay, Georgina & Phil are happy to discuss Prolactinoma and are from different age groups, they are willing to talk about the emotional impact, fertility and all Prolactinoma treatments.
- Howard has Prolactinoma and is also our expert on benefits advice. He can discuss infertility/libido; osteoporosis; depression; sleep disorder; testosterone; work and relationship problems.
- We also have Irene, Shelley, and Rosa who are mothers of pituitary patients willing to discuss their experiences and one is actually the mother of a deceased patient and has very kindly offered to volunteer to speak with anyone in the same situation.
- Nick has Hypogonadism and is willing to discuss all aspects of the condition and associated symptoms such as fatigue, depression, sleep disturbances, and treatments.
The above listed will be updated again very soon. If you are interested in becoming a volunteer telephone buddy yourself you can read more about the role here.