IIH UK 2014

 

2014 Laura Broomfield Patient Conference and AGM

The 2014 IIH UK Patient Conference & AGM affectionately known as 'The Weekender' was held this year in June on a lovely sunny weekend at Burn Hall, York. There was a good turnout and some had travelled many miles to attend!

A few of the members had taken the opportunity to take up the hotel's 'Weekender Deal' and during the evening before the big day there were laughs a plenty with fun presentation awards. Certificates and sashes were worn with pride and the awards presented ranged from 'The Hungriest Dieter' to 'Most Talkative North Westerner!'

During the patient conference, Members were informed about recent Trustee changes and how well the new team was working together. Sandra Doughty, who conducted the presentation, highlighted IIH UK's recent achievements and provided examples of growth in various areas of the charity. Sandra shared information regarding conferences that Trustees had recently attended and explained to Members that IIH UK had become affiliates in the James Lind Alliance. She then explained how, along with IIH sufferers and clinicians, IIH UK wanted to conduct a 'Priority Setting Partnership' to enable the publishing of a 'Top Ten' areas of IIH research that the group deemed most important to them. Members were told about recent associations and partnerships that IIH UK had engaged with and how IIH UK would be working with The Benjamin Comins Forever Fund, a voluntary association (soon to be registered charity) who are planning to provide financial help to families with children diagnosed with IIH.

Members were then told about the first of three exciting new clinical trials for IIH patients being conducted by clinicians in Birmingham. The IIH Life patient registry, a first of its kind in the world, will capture over a period of time, changes in IIH Vision, Headache and Patient Centred Outcomes (Quality of Life & Depression). In addition it will evaluate the different clinical practice across the 40 UK Neurological centres. Newly diagnosed patients will be asked to complete a yearly headache diary and will be able to log onto their own secure area and update the patient part of the registry. Clinicians will look for the optimum outcomes from hospitals, and will follow their practice. It is widely thought that this will finally enable a care pathway for IIH to be developed. The Birmingham team will produce an annual report to provide an update of the trial's progress and this will be published to the IIH UK website. IIH UK is funding 2 years of this 5 year study, but Sandra stated that IIH UK would like to raise an additional £25,000 to enable the registry to run for another 5 years. This would enable further data to be collected which could be shared with researchers and enable more information to be made available to clinicians about treatment and pathogenesis of IIH.

Members were then told about the IIH Weight Trial and were advised that, until now, there had never been a large clinical trial to determine whether weight loss could offer a potential cure for the 90% of IIH sufferers who were women and overweight. Patients that meet the criteria will be randomly chosen to either undergo either a surgical procedure to assist weight loss, or receive vouchers to attend Weight Watchers. During this trial, clinicians will be undertaking a battery of secondary and exploratory studies to further investigate the treatment and pathogenesis of IIH. A range of cognitive function tests will be run on every patient to look at how IIH affects memory. One of the tests will be repeated after patients have undergone lumbar punctures to see if results change when pressure is lowered. An exciting new way of measuring Intracranial Pressure (ICP) with a non-invasive technique (which has shown promising results) will also be clinically evaluated in this trial and every participant on the trial would undergo a sleep apnoea test. MRI scans of all patients and a control group of 20 people will be evaluated to look at Venous Sinus Stenosis and whether there is improvement of stenosis with weight loss; something that has never been looked at before in a clinical trial. Finally, Sandra mentioned that there would be exploratory analysis on inflammation research and immune cell characterisation and a range of tests on bloods to look at hormone, vitamin levels and autoimmune markers. Patients will also be tested for a rare condition called Allodynia (sensitivity to pain) and tests will be undertaken to see if patients could be pre-diabetic too.

The final trial in Birmingham, which has already started and is recruiting now, is for a new drug which clinicians hope will improve visual problems and headache symptoms in IIH patients. The Members were told that Acetazolomide which is the primary medication prescribed to IIH patients, is not tolerated by up to 50% of patients and a new more tolerable drug is being sought which would be prescribed for IIH patients. The trial involves being allocated a placebo or the new drug for a period of 90 days with a lumbar puncture being taken and sight evaluated at baseline and after the 90 days to record opening pressure and extent of papilloedema. If the trial is successful, it could go to phase 3, whereby it will be tested on a larger group of people.

Dr Wendy Adams a Consultant Neuro Ophthalmologist at Sunderland Eye Infirmary gave an interesting presentation to the conference attendees about IIH eye tests and what experts look at in IIH patients. Dr Adams demonstrated through her slides some real life examples of papilloedema and visual field tests and spoke about the different machines that clinicians use to record data. Dr Adams then answered a range of questions from the floor from the Members present.

The IIH UK Trustees and Officers were at hand to chat to members and they also provided a well stocked shop, clothes swap opportunity and offered membership information. New friends were made on the day and a jolly nice lunch was provided by the hotel too! Following the AGM, the afternoon session featured a quiz and a fun bingo session, followed by the raffle. An amazing £318.09 was raised from raffle tickets, shop and clothes swap donations - a big thank you to all! The day culminated in a visit to The York Bird of Prey centre, situated in the hotel grounds. IIH UK wishes to thank York Bird of Prey centre for the exciting display they kindly laid on free of charge for conference attendees. A wonderful time was had by all in the glorious sunshine.

Minutes of the AGM can be found here file icon pdf Draft Minutes of AGM 21st June 2014.pdf

Scroll down to look at some of the photos taken on the day and some of the Member's feedback.If you couldn't make it this year, we hope to see you next year!