Welcome to the IIH James Lind Alliance Priority Setting Partnership (PSP) website

Protocol:  JLA PSP Protocol v1.1

Watch the Video to learn more about the JLA and why the IIH PSP is important: JLA IIH Priority Setting Partnership

The IIH PSP was established by IIH UK in 2017, in collaboration with the James Lind Alliance (www.jla.nihr.ac.uk), to bring patients and clinicians together to identify the shared research priorities for IIH in adults (16+).

We want your questions about IIH to guide future research and to help us to improve the care for patients suffering from IIH. This is your chance to have a voice in shaping the next generation of research advances.

The first stage of the project is to collect uncertainties about the causes, diagnosis, management and provision of care for adults (16+) with IIH.

Please respond to the following short survey if you are:

* A person with IIH

* A carer, friend or family member of someone with IIH

* A health or social care professional involved in IIH treatment or care

* An organisation representing the interests of people with IIH

Survey link: Thank you to everyone who completed our IIH PSP Survey, the survey is now closed. We had a total of 349 respondents which raised 1799 uncertainties (unanswered questions) about Idiopathic Intracranial Hypertension.  The next few months will be spent collating the data, we will keep you updated as this process continues.

 All your answers will be treated anonymously.

The survey will remain open until July 2017.

 

Steering Group

The Steering Group is responsible for overseeing the PSP and is comprised of patient representatives, clinicians and other experts. It is chaired by an independent adviser from the James Lind Alliance to ensure that the PSP process follows the JLA principles of transparency and equal involvement of patients, carers and clinicians.

 

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.

 

 

PSP Lead: Krystal Hemmings

Krystal is a lecturer in Biomedical Science and Public Health at the University of Derby and has research interests in molecular nutrition.

She was diagnosed with IIH in 2014 and was shocked by how little was known about the condition. She officially took the position of research representative for IIHUK in 2016. In this role she works closely with clinicians at University Hospitals Birmingham on various projects, as well as conducting patient centred research through the charity.

 

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. 

 

Patients /Carers

PSP- CoordinatorShelly 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.

 

Rachel Bennett

Rachel has been a Nurse for 25 years – 23 of those within the NHS. She has qualifications in General Nursing, Paediatric Nursing and Health Visiting. Predominantly Rachel has practised in General/Paediatric Accident and Emergency and as a Specialist Practitioner in Public Health within community settings. Currently she is a Safeguarding Children’s Nurse for a large community trust. Rachel also still practises as a clinical nurse at sporting events.

In addition Rachel has had a diagnosis of Idiopathic Intracranial Hypertension (IIH) since 2008. Her IIH is managed conservatively and she is currently in remission.

Rachel was also a previous Trustee for IIH UK, Publicity officer for IIH UK and a previous moderator on the IIH support forum.

 

Tracey Ritson

Tracey was diagnosed with IIH in November 1988. She has undergone a total of 31 brain surgeries to attempt to bring her IIH symptoms under control. After medication caused kidney problems she went onto have shunt surgery, after having various types of shunts, revisions and infections she contracted meningitis so had to have her shunt removed. She now has two sub-temporal decompressions to help alleviate the symptoms and although this has stabilised her vision she continues to have daily headaches. This has not only took its toll on her general health, but also her families. Having suffered with IIH for almost 20 years she is excited to have an active role in helping to find the top 10 areas for IIH research.

 

Amanda Denton

Amanda is a Lecturer in Physiotherapy at Plymouth University and Leads an MSc in Neurological Rehabilitation. Her research interests relate to interventions to improve walking in people with hereditary spastic paraparesis.

She was diagnosed with IIH in 2014 and has found the lack of information and awareness a barrier to her and her family learning to live with this condition.

 

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.

 

 Clinicians / Health care professionals

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 NHS Trust 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.

 Partners

 Neuro alliance logo  

 

There are several organisations and charities who are involved in this PSP; these include:

* Shine

* Neurological Alliance

*SBNS CSF subgroup - The Society of British Neurological Surgeons

*ABN - Association of British Neurologists

*BASH - British Association for the Study of Headache

*BIOS - British and Irish Orthoptic Society

*UKNOSIG - The United Kingdom Neuro-Ophthalmology Special Interest Group

*RCO - Royal College of Ophthalmologists

*Fight for Sight

If your charity or organisation represents individuals with IIH and you would like to become a partner of this PSP then please get in touch.

Contact us

If you have any questions about the IIH PSP, please contact Krystal Hemmngs (PSP lead) at the following email address: This email address is being protected from spambots. You need JavaScript enabled to view it.