The Pituitary Foundation: A national patient support group
MN Carson1 & SL Lightman2
The Pituitary Foundation was founded in 1994 when a group of endocrinologists, GPs and patients identified the need for a support group for patients with pituitary disease. Charitable status followed in 1996. It's core aims are to provide support to patients, their families and carers, to act as a source of reliable information and to increase awareness of the Foundation and pituitary disease within the medical profession and the general public. Membership, services and publications are provided free of charge. The Foundation relies on financial support from a variety of sources: the Department of Health, various Grant Making Trusts, pharmaceutical companies, organised fund-raising events and voluntary donations from members. Support is available from the Patient Support Manager, an endocrine nurse service and a group of Telephone Buddies (patients and carers who provide peer support). The Foundation currently receives ~7,000 enquiries/year of which ~1,500 come from first time callers. Publications include a quarterly national newsletter 'Pituitary News', ten patient information leaflets on specific pituitary conditions and a GP Factfile. To date ~14,000 Factfiles have been distributed. There is also a comprehensive website developed by a pituitary patient which receives ~18,000 'hits'/year. A National Conference is held every 15-18 months and attracts some 400 delegates. Local support is provided by 41 patient/carer led groups across the UK. These support groups arrange their own meetings and most produce their own newsletters. The groups are overseen by a National and two Regional Co-ordinators and further supported by a Steering Group. Membership of the Foundation has grown from 224 to almost 10,000 today increasing at a rate of 125-150/month during 2002. Despite this increase in membership only 1 in 7 pituitary patients are members. In November 2002 an Early Awarenes Project was launched with the aim of improving patients psychological and physical well-being by seeking to ensure that patients with pituitary disease receive an earlier diagnosis and access to services at an earlier stage of their treatment.