16 Patient Conference Report

IIH UK 2016 Laura Broomfield Patient Conference

Our 2016 Patient conference was held in Harlow, Essex and was attended by 43 IIH Patients, their families and friends. Unfortunately 15 others registered to attend but were unable to come. Due to the nature of IIH we always expect a number of non-attendees, we all know how debilitating IIH can be and some IIH patients are unable to work and reply on benefits. This is why we do not charge members to attend but cover the whole conference costs out of our funds. As usual it was an extremely successful and informative event.

IIH UK Chair Shelly Williamson opened the conference with an overview of the charity. She talked about the website, our social media accounts, our online shop and the International Support forum. She explained how the forum has on average 2 new members per day. The female to male ratio is 12-1. The most popular board on the forum is the General IIH Questions and answers which now has 11,607 posts. During June our forum received 349,812 page views, looking deeper into the forum statistics Shelly found that since 1stJan this year 2,277,348 pages have been viewed. A staggering statistic! She then went on to talk about the 14 regional fb groups and the IIH Support UK group which currently has 2801 members and the Weight loss Support Group.

Shelly then talked about how we are funded, we are a small charity with no paid staff and are funded by membership fees and fundraising. Fundraising is our biggest earner with around £15,000 being raised for us during the last financial year.

Shelly went on to talk about the research that IIH UK are involved in. Firstly she talked about the IIH Life Registry. The registry was developed by Dr Sinclair and her team of clinicians at Birmingham University, it is a database where clinicians can record everyone diagnosed with IIH which is now working well in Birmingham. It will soon be rolled out across the UK with an aim to get it into 40 other neurological centres. Initially only newly diagnosed patients were to be added to the registry but that has now changed and ALL IIH Patients will be added. Back in 2013 IIH UK committed to funding the registry beyond the initial funding date which has now ended at a cost of £5,000 per year. IIH UK are funding years 4 & 5 but we want to raise £25,000 to fund it for an additional 5 years. It is important that the Registry runs for as long as possible as the data that the registry captures will help to guide research over the coming years. Shelly spoke about how IIH UK worked closely with Dr Sinclair and her team and that Trustees and Research Rep sit on the Trial Steering Committees for Birmingham’s Weight Trial, Drug Trial as well as the IIH Life Registry and the Care Pathway that Dr Sinclair has been commissioned to write by the Association of British Neurologists.

The Weight Trial is hoping to expand to 9 other hospitals soon and we will update you once the process has been finalised. The aim of the IIH:WT trial is to assess if weight loss with the aid of bariatric surgery and/or dietetic intervention is an effective sustainable treatment for IIH, with sustained reduction of ICP, visual symptoms and headaches.

The Drug Trial is already recruiting in 5 hspitals. IIH UK are funding travelling expenses for participants of both the Weight Trial and Drug trial which will allow people from further afield to take part. This study aims to prove that blocking the 11β-HSD1 enzyme will reduce the pressure in the brain and will hopefully improve symptoms, such as headaches and visual problems, seen in IIH

Shelly reiterated to the audience the need to find a cure and effective treatment for IIH patients and how important it was for Birmingham’s trials to be a success. She went on to mention that the trustees reviewed patient leaflets for the Trials and how, after receiving approval from the Ethics Committee, IIH UK advertises Birmingham's trials to encourage better patient sign-up.

Shelly talked briefly about our association with other organisations, Namely the James Lind Alliance, Genetic Alliance/Rare Disease UK, The Brain & Spine Foundation, The Neurological Alliance and most recently The Health and Social Care Alliance Scotland.

‘What’s Next’ for IIH UK. Over the next 12 months we plan to continue the dialogue for setting up a Priority Setting Partnership with the James Lind Alliance, we will continue to provide updates on trials and form a list of Neurologists/ Neurosurgeons and Ophthalmologists with an interest in IIH, promote and highlight any research, create child friendly Patient Leaflets, add links to headache organisations to the website, continue to build relationships with clinicians, continue to promote our aims to protect the physical and mental health of sufferers of IIH through the provision of support, education and practical advice and to advance the education of the public in general on the subject of IIH and to promote research for the public benefit in all aspects of IIH and to publish the results and report the findings of the University of Derby survey investigating painkiller use in individuals with IIH.

Shelly's presentation concluded with a roundup of our funding: IIH UK are funding the Life Registry, the IIH UK Patient Conference, we are sponsoring the CSF Symposium held at the Queen Elizabeth Hospital, Birmingham in October, we are also funding the travelling expenses for those taking part in the Weight trail and Drug Trial which enables people from further afield to take part and lastly we are setting up a Priority Setting Partnership (PSP) with the James Lind Alliance (JLA) which is estimated to cost around £25,000.00. Since our patient conference we have now been accepted by the JLA to create a PSP which will consist of clinicians, researchers, patients and carers. The end result being to identify and prioritise the treatment uncertainties which they agree are the most important for research. The £25k cost has already been raised thanks to all of our wonderful fundraisers. We will keep you updated about this on the research page of our website.

Sarah Venugopal then introduced the audience to Raremark, she went on to explain that Raremark is a privately funded new service for families affected by rare disease. Its online platform opens up a world of trusted and verified information by indexing scientific articles and medical guidelines for each disease. Users can comment and share knowledge, connect with specialist centers of research and find out about potential drugs in development. Raremark have developed an online community for IIH patients, their families and friends, their link can be found on our website.

Dr Sinclair spoke about headache in IIH with 94% of patients suffering with this symptom.

Dr Sinclair talked about how headaches affect quality of life and also the differing types of headaches; migraine, high pressure, low pressure, medication overuse and menstrual related. 68% of IIH patients continue to suffer with headache even when the brain pressure becomes normal. She talked about ‘Empty sella’ which concluded that it is not unique to IIH as it can occur in healthy people too, although it is quite common in IIH it is nothing to worry about.

Dr Sinclair then went on to discuss ways to treat headache in IIH covering topics such as LP, Shunts and Stents. She talked about how many people with chronic IIH also have other headache disorders such as migraine. She said that it is important to evaluate what the main cause of the headache is, treatments are then aimed at those main causes. Chronic IIH seems to have the greatest headache disability, possibly with more than one type of headache occurring.

She went on to discuss what happens during an IIH headache assessment, during the IIH headache assessment they will look in your eye and ask a detailed history about the headache which will help them to evaluate the type of headache you have. Some IIH patients may also have migraine and both need to be treated.

Dr Sinclair said that some IIH patients who have not had their headache properly treated may go on to develop a medication overuse headache. She acknowledged that stopping pain killers is really hard for some people, typically they may feel worse for 1-8 weeks and must ideally have the support of their doctor and family. A 2012 study showed that in this instance adjusting painkillers reduced headache from 28 days per month to 15.

Dr Sinclair then spoke about weight loss and how it can help to reduce headache in IIH. In a study the results showed that a 15% weight loss drastically reduced headache and LP after weightless showed a reduced CSF pressure. She acknowledged that weight loss for IIH patients was notoriously difficult to achieve and strategies for long term weight loss need to be developed.

She concluded with a headache roundup. Miss Ruchika Batra talked about Optical Coherence Tomography (OCT) and how it is helping in IIH. She explained the anatomy of the eye and explained how severe/ longstanding papilloedema (PAP) can compromise eyesight but as papilloedema resolves the risk to the eye reduces.

She talked about the challenges faced when a patient presents with papilloedema. The audience heard how 40% of patients labelled with IIH referred to a neuro-ophthalmology clinic do not actually have IIH. This error is due to inaccurate identification of papilloedema in headache patients which is why OCT is becoming more important in identifying true pap in patients with IIH.

She went on to explain that OCT is similar to an ultrasound, but instead of soundwaves it uses light, it is a simple test, quick, painless, can be done on dilated or undilated eyes and is harmless.

Her slides showed how OCT was helping them to differentiate between pap and optic nerve head drusen. To the untrained eye drusen looks just like pap, but it is caused by crystals forming on the optic nerve and not by swelling. She pointed out that clinicians cannot look at an OCT in isolation but that they must listen to the patient and that OCT measures the total thickness of the nerve fibre layer and does not measure the number of functioning nerve fibres.

In conclusion she said that OCT has an important role in IIH, it gives an objective assessment of the optic nerve head, is useful for diagnosing, documenting and monitoring pap and said it must be used in conjunction with clinical examination.

Miss Susan Mollen presentation was about Trends in IIH over the last decade. She acknowledged that words and numbers alone cannot capture the experience of being diagnosed with and living with a rare disease and that they can’t communicate the many elements and challenges IIH patients have in explaining to their loved ones, carers and doctors how they feel. With that said, figures could help open our eyes to some of the issues faced by our patients which will help to plan and direct services in the NHS and help with setting research agendas.

The data she showed during her presentation was taken from the NHS database called Hospital Episode Statistics (HES). HES processes over 125 million admitted patient, outpatient and accident and emergency records each year, this data is collected during a patient's time at hospital and is submitted to allow hospitals to be paid for the care they deliver. There are strict statistical disclosure control in accordance with the HES protocol/ethics to all use of HES data. This ensures that patient confidentiality is maintained.

The HES data tells us that 20,700 people have been diagnosed with IIH in the last 13 years. 17,049 were female and 3651 were male. The highest incidence of females was in the 20-29 age group whilst the highest incidence of males was under 16. The average age was 28 years. Per location the highest ratio is in the South East with the North West following close behind.

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