DAVID’S STORY

‘I was diagnosed with my pituitary condition, empty sella syndrome, in late 2002. My consultant at that time recommended that I should join the Pituitary Foundation. However, due to various circumstances and the pressure of work commitments, I didn’t join the group until 2012.

The Pituitary Foundation supports both patients and healthcare professionals in numerous ways. Over time, I have met many people with a similar condition to my own, or with more severe or varied diseases, but all of us have much in common. Being able to discuss our conditions, treatments or concerns with one another allows us not only to share our experiences, but also to offer support to one another if needed.

Since joining, I have attended many interesting, informative and helpful meetings, expanding my knowledge both of the pituitary and of a holistic approach. The speakers have included a range of healthcare professionals, who have all offered wide-ranging advice about the pituitary and related issues, as well as general health recommendations. Recent topics have included vitamin D and bone health, dynamic function tests and emergency hydrocortisone injection training. It is always helpful to have an update and practical session on the preparation and administration of this vital injection. We have also occasionally had speakers from the Pituitary Foundation itself.

The sessions have all proved of value not only to patients but also to their carers, who are very welcome at the meetings. We are grateful to all those who give up their Saturday mornings to support us.

As well as the valuable opportunity to share experiences and suggestions with other members before and after the formal part of our meetings, most members also enjoy a social get-together for lunch at a local pub at least once a year. This gives us the chance to get to know one another better.’

David Lynam

A SOURCE OF SUPPORT

The Pituitary Foundation not only raises awareness of pituitary conditions among patients, it also provides information and resources to healthcare professionals, who may not commonly deal with such diseases.

The Foundation achieves this by producing numerous free publications and promoting campaigns to improve detection, care and safety.

These include the ‘Know your insipidus from your mellitus’ campaign, which was aimed at accident and emergency staff, nurses and pharmacists working in non-endocrine settings, and highlighted the importance of desmopressin as a life-saving medication for individuals with diabetes insipidus.

Our ‘Get red flagged’ campaign encouraged patients with adrenal insufficiency to register with their ambulance trust so their condition is flagged on the trust’s system. The accompanying factsheet detailed how patients can register, so that if they ever call 999, the call will be flagged for priority attendance by a vehicle carrying emergency hydrocortisone.

This year, we ran a campaign to improve opticians’ awareness of pituitary tumours, to reduce time to diagnosis. Information related to all campaigns, past and present, can be found at www.pituitary.org.uk or by email from [email protected]. We encourage all healthcare professionals to signpost patients to the Pituitary Foundation for help and support when diagnosed. As David says in his pituitary story here, new members and their carers are always welcome at meetings, and the Foundation is always willing to offer help and support.

MAKING CONTACT

www.pituitary.org.uk

www.facebook.com/pituitaryfoundation

www.twitter.com/pituitary_org

Patient support and information helpline

0117 370 1320 (Mon–Fri 10.00–16.00)

[email protected]

Endocrine nurse helpline

0117 370 1317

(Mon 10.00–13.00 and 18.00–21.00, Thu 09.00–13.00)

General enquiries (e.g. publications)

0117 370 1333

[email protected]

 

The Society for Endocrinology is committed to supporting groups that represent patients with endocrine conditions by facilitating dialogue with the medical community. Click here for a list of groups supported by the Society.