JLA advisor: Maryrose Tarpey

Maryrose is an independent adviser providing support to the Idiopathic Intracranial Hypertension Partnership (PSP) on behalf of the James Lind Alliance (JLA).

Her career has focused on research and evaluations of various health and welfare policies mainly in the UK. She has a strong background in actively involving patients and practitioners in publicly funded research and in project management and facilitation.

She worked for INVOLVE (supporting public involvement in NHS health and social care research in England) for over ten years (2004/15) and has had links with the JLA since it was first set up in 2004. She will chair the steering group and provide support and advice on the various stages of the PSP.

Clinical Lead: Dr Alex Sinclair

Dr Alexandra Sinclair is a Consultant Neurologist at Queen Elizabeth Hospital, University Hospital Birmingham NHS Foundation Trust and NIHR Clinician Scientist at the University of Birmingham. She works as a Clinician Scientist with a role combining clinical neurology with translational research into idiopathic intracranial hypertension and the neuroendocrine aspects of headache.

PSP- Coordinator: Shelly Williamson

Shelly’s daughter was diagnosed with IIH in 2007 at the age of 13. At that time she was working as an Ofsted Registered Childminder working with Sunderland Social Services offering respite care. It soon became apparent that she could no longer do this whilst caring for a child with a chronic illness so had to give it up.

When her daughter was diagnosed with IIH Shelly asked the consultant for information about IIH and was told there is none and to google it when she got home. She did just that and found the IIH Support forum where she volunteered and became a moderator. Soon after, she was invited to join the team and was instrumental in getting the IIH UK Charity off the ground. First as Treasurer, then Secretary and now holds the position of Chair. Shelly has spent the last 9 years working as a volunteer for IIH UK. During this time she has taken an active role in supporting others with IIH through the IIH UK International Support forum and IIH UK’s social media groups, attending conferences and taking an active part in the charities activities.

Amanda Denton

Amanda was diagnosed with IIH in 2014 and found the lack of information and awareness is a barrier to her and her families learning to live with this condition. She is a lecturer in Physiotherapy at Plymouth University and leads a MSc in Neurological Rehabilitation. Amanda is assistant Research Rep for IIH UK.

Norma Dann

Norma is 57 years old and has IIH and Chiari. Although she was not officially diagnosed with IIH until she was 32, doctors believe she had suffered from it since her teens.

She lives at home with her partner Billy and has three grown up children. She is registered severely sight impaired, due to being born with bilateral congenital cataracts.

In 2015 she was doing the admin work for the fundraising team at IIH UK, in December that year she accepted the temporary position of IIH UK secretary until she was voted in officially at the 2016 A.G.M.

Rachel Bennett

Patient representative.

Martin Plowright

Patient representative.

Dr Anita Krishnan

Dr Anita Krishnan is a consultant neurologist at the Walton Centre NHS Foundation Trust, Liverpool and is also one of the visiting neurologists to The Wirral University Hospitals NHSTrust and Warrington and Halton NHS Trust. Her specialist interests are in the field of headache medicine and CSF pathway disorders, especially Idiopathic Intracranial Hypertension. She is part of the ABN Advisory Group on headaches and the Specialist Interest group in IIH.

Miss Susan Mollan

Susan is a Consultant Neuro-Ophthalmologist at University Hospitals Birmingham (UHB). She completed higher surgical training at Oxford and the West Midlands. She currently co-runs a joint neurology-neuro-ophthalmology clinic in Idiopathic Intracranial at the Institute of Translation Medicine at UHB. Her research interests include OCT imaging of the, IIH and Giant Cell Arteritis.

Dr Arun Chandran

Dr A Chandran is a Consultant Interventional Neuroradiologist, working at The Walton centre NHS Foundation trust. He specialises in minimally invasive treatment of vascular diseases of brain and spine. He has a keen research interest in venous stenting as a treatment for visual loss in patients with IIH. He is currently involved in setting up a clinical trial to assess the role of this minimally invasive technique compared to traditional treatment of shunting of brain fluid. He will be part of this steering group and provide support and expertise in establishing the venous stenting treatment as one of the top research priorities.

Mr Ahmed Toma

Mr Toma is a consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery at Queen Square/London, and Honorary Senior Lecturer at the Institute of Neurology of UCL. He has clinical subspecialty interest in adult hydrocephalus and research interest in intracranial pressure and cerebrospinal fluid dynamics.

Dr Caroline Rick

Cally Rick is the Neurosciences Team Leader at the Birmingham Clinical Trials Unit at the University of Birmingham. She has managed clinical trials in an academic setting for more than a decade including working on two trials in Idiopathic Intracranial Hypertension.

Sister Julie Edwards

Julie Edwards has worked as a headache nurse for the last 11 years. This involves the diagnosing and managing of individuals with all types of headache disorders including IIH at UHB and SWBH NHS trusts. She is a registered nurse with specialist practice in neuro-medicine and neuro-surgery and completed her masters in chronic pain management. She enjoys her role and aims to help with accurate diagnosis of headache conditions, providing evidence based treatment and support for the individual with an aim to minimise the disability caused by headaches whenever possible. She works alongside Dr Sinclair and Miss Mollan to optimise headache care.

Dr Kamal Mahawar

Kamal Mahawar is a Consultant Surgeon at Sunderland Royal Hospital. He is the Social Media Editor of "Obesity Surgery" and an Associate Editor of "Clinical Obesity”. He serves on a number of committees including the communications committee of the IFSO and the ASGBI and Emerging Procedures Committee of the ASMBS.

Clare Herd

Clare is a systematic reviewer working in the areas of Parkinson’s disease and headache. Her main responsibility is the undertaking of systematic literature searching to identify existing evidence as a basis for development of clinical trial proposals, grant applications and synthesis of worldwide research evidence on a particular therapeutic question.