Janis Hickey is founder and director of the British Thyroid Foundation (BTF). She was diagnosed with Graves’ disease and thyroid eye disease in 1984, an experience that led her to set up the BTF in 1991. In 1996 Janis was presented with a Yorkshire Woman of Achievement Community.
The BTF works with medical professionals, volunteers and patients to provide support and information based on reliable medical evidence and personal experience for all aspects of thyroid disease. The range of help offered includes comprehensive guides and advice circulated to patients through hospitals, GPs, the BTF website (www.btf-thyroid.org), a nationwide network of local support groups, and telephone support contacts.
The BTF is an NIHR partner and offers an annual award for research into thyroid disorders, supports research grant applications by highlighting the benefit to patients, and is actively involved in partnerships, studies and campaigns to bring about improvements in treatment and care.
In addition to being a member of the UK Iodine group, the BTF’s other current campaigns and projects include:
Thyroid Eye Disease – assisting the implementation of the ‘Amsterdam Declaration for Graves’ Orbitopathy’ in the UK.
Hypothyroidism Care Strategy – a new project set up to identify ways to improve support for hypothyroid patients
Thyroid Cancer – preparing the 3rd edition of ‘Thyroid Cancer: For Patients, By Patients’
Children – launched a short animated film for children with thyroid disorders and in 2014 organised the first thyroid conference for children and parents.
Pregnancy and thyroid disorders – raising awareness of the special thyroid care for expectant mothers.
Films – developed a suite of short films on hyperthyroidism, hypothyrioidsm and thyroid cancer that reflect patients’ experiences of thyroid disorders
The BTF communicates the patient perspective of thyroid disease at conferences, meetings and in dialogues with medical and health professionals.
Publications
Mitchell AL, Hickey B, Hickey JL, Pearce SH. Trends in thyroid hormone prescribing and consumption in the UK. BMC Public Health 1994;9:132, 2009
Estcourt S, Hickey J, Perros P, Dayan C, Vaidya B. The patient experience of services for thyroid eye disease in the United Kingdom: results of a nationwide survey. Eur J Endocrinol. 2009; 161(3):483-7. doi: 10.1530/EJE-09-0383
Perros P, Chandler T, Dayan CM, Dickinson AJ, Foley P, Hickey J, Macewen CJ, Lazarus JH, McLaren J, Rose GE, Uddin JM, Vaidya B. Orbital decompression for Graves’ orbitopathy in England. Eye (Lond). 2012; 26(3):434-7. doi: 10.1038/eye.2011.323
Robinson J. Richardson M. Hickey J. James A. Pearce S.H. Ball S.G. Quinton R. Morris M. Miller M. Perros P. Patient Knowledge of Antithyroid Drug-Induced Agranulocytosis. Eur Thyroid J (DOI: 10.1159/000367990),
see: http://www.btf-thyroid.org/images/agranulocytosis_article_european_thyroid_journal.pdf
Smith HB, Porteous C, Bunce C, Bonstein K, Hickey J, Dayan CM, Adams G, Rose GE, Ezra DG. Description and evaluation of the first national patient and public involvement day for thyroid eye disease in the United Kingdom.
Thyroid. 2014 Sep;24(9):1400-6. doi: 10.1089/thy.2014.0200. Epub 2014 Jul 21.
Anna L Mitchell, Lynne Goss, Lemonia Mathiopoulou, Margaret Morris, Bijay Vaidya, A Jane Dickinson, Anthony Quinn, Colin Dayan, Julie McLaren, Janis L Hickey, John H Lazarus, Geoffrey E Rose, Peter Foley, Caroline J MacEwen, Petros Perros. DiaGO (Diagnosis of Graves’ Orbitopathy): results of a pilot study to assess the utility of an office tool for practising endocrinologists. JCEM 2014 http://press.endocrine.org/doi/abs/10.1210/jc.2014-3146
Media Interviews
Radio 4 Case Notes podcast on Thyroid Disorders 1 April 2008: http://www.bbc.co.uk/radio4/science/casenotes_20080401.shtml