Over the course of 2018 IIH UK will continue to work to ensure that we become part of a collective voice of organisations that represent neurological conditions. This will enable further awareness and campaigning for improvement for the lives of patients and families affected by Idiopathic Intracranial Hypertension (IIH). In addition, this will assist in IIH being better understood by the general public and by all professionals with whom IIH patients come into contact. IIH UK are working closely with Dr Alexandra Sinclair and her team of clinicians at University Hospitals Birmingham.
During 2015 IIH UK began the process of setting up a Priority Setting Partnership facilitated by the James Lind Alliance, where we came together with clinicians and patients to prioritise and determine the Top Ten areas of IIH research that are deemed the most important and need further research, this project is now complete and you can read all about it on the PSP page of our website. We were able to self fund this project thanks to our wonderful supporters fundraising activities.
Consensus Guidelines on IIH management were published in the JNNP early 2018, the aim was to capture interdisciplinary expertise from a large group of clinicians, reflecting practice from across the UK and further, to inform subsequent development of a national consensus guidance for optimal management of IIH. This is an exciting development for people with IIH and we hope that they will be adopted by clinicians nationwide. You can find the guidelines on our website.
IIH UK is dedicated to providing sources of information and support to those with IIH, and all who support them. We promote awareness, fund and facilitate research, and advocate the Charity’s public, social and support activities. We are primarily a Patient Support Charity but also fund the IIH:Life Registry which will improve understanding of IIH as very little has been published on long-term disease outcomes and disability in IIH and will improve patient care and safety. It will identify patients at risk of poor outcomes and counsel patients and guide future research design. By involving patients the research will ensure patients’ views and perception of care, play a central role in future IIH management.
IIH UK also fund the costs of patient travel/accommodation for the current research trials which are taking place at University Hospitals Birmingham allowing people from further afield to take part and sponsor the CSF Disorders Day, a one day Symposium which showcases the clinical approach and research currently being conducted on disorders of Intracranial Pressure (ICP) by both clinicians and translational scientists.
IIH UK is members of the following organisations: Genetic Alliance. Neurological Alliance. Alliance Scotland. NCVO and Rare Disease UK. We also support the Brain & Spine Foundation.
IIH UK is a volunteer run charity. Everyone who works for IIH UK either have IIH or care for someone who does and do so voluntarily.