The EVOC Red Book

The online directory to find third sector Organisations, and their services across Edinburgh


Directory of local groups/projects who are offering specific support during the current COVID-19 pandemic »

In line with Government advice, most groups and organisations in the city have had to take the unfortunate decision to suspend face to face and group work activities. Please telephone or email the contacts listed for the group or organisation if you are interested in their work to check what alternative arrangements might be available or to find out about alternative groups or services in your area.

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:

- Listen
- 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 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.

Youlie and David are our two buddies with Craniopharyngioma and are willing to discuss their condition alongside medication, surgery and other common symptoms.

Amy, Sue, Delyth, 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.

Allyson has Lymphocytic Hypophysitis and can discuss growth hormone, DI, depression, headaches, and unsympathetic employers (Allyson is also a life coach).

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, Anne 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.
All ages
Days and Times
Contact Details
Contact Telephone: 0117 370 1320
Contact Email:

This record was last modified on: 20 February 2017