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HOPE PROGRAMME FOR Idiopathic intracranial hypertension (IIH)

Idiopathic intracranial hypertension (IIH) is a rare neurological condition caused by raised pressure around the brain. It can cause severe headaches, visual symptoms, fatigue, tinnitus, brain fog and, in some cases, sight loss. It can also affect confidence, mood, work, family life and day-to-day wellbeing.

The Hope Programme for IIH is a six-session, online self-management course co-designed with IIH UK, people who live with IIH and healthcare professionals. It gives people practical tools, peer support and a safe space to learn how to manage the emotional, social and practical impact of living with IIH.

The course is flexible and peer-supported. Participants work through weekly online sessions at their own pace, join discussions with others living with IIH, and can attend optional live Hope Cafés. Trained volunteer facilitators with lived experience of IIH support the group throughout.

Thank you to Amanda Denton and Shelly Williamson, IIH UK trustees and trained Hope Programme facilitators.

Amanda is a Trustee and Research Rep for IIH UK. She was diagnosed with IIH in 2014 and found the lack of information and awareness was a barrier to her and her families learning to live with this condition. Amanda completed the Hope Programme for Carers and contacted us in 2022 to explore opportunities to co-design programme for people living with IIH.

Shelly is the Chair of IIH UK. Shelly’s daughter was diagnosed with IIH in 2007 at the age of 13. When her daughter was diagnosed with IIH, she asked the consultant for information about IIH and was told there is none and to Google it when she got home. Since then she has spent the last 17 years working as a volunteer for IIH UK. During this time, she has taken an active role in supporting others with IIH, attending conferences and taking an active part in the charity’s activities, including facilitating the Hope Programme.

Thank you to IIH UK for their ongoing partnership, support and commitment to improving the lives of people with IIH and their families.

Impact to date

Since launch in 2022, the IIH Hope Programmes have reached over 800 people, including parents of children with IIH. A 2026 report evaluating the long-term mental wellbeing outcomes and acceptability of a peer-supported digital self-management programme for people living with Idiopathic Intracranial Hypertension: A multi-method evaluation: “I felt so, so alone, joined the Hope Programme and realised... I wasn’t”: looked at 454 people enrolled on 11 courses delivered between 2022 and 2025. The evaluation found promising improvements in mental wellbeing that were largely maintained 12 to 50 months after the course end.

The Hope Programme has the potential to be a scalable, acceptable, low burden self-management intervention to provide holistic and ethical support.

Read the full evaluation report for the findings, participant feedback, recommendations and limitations.

Is the Hope Programme for you or the people you support?

Self-management is beneficial in helping to improve health and wellbeing. If you are the kind of person who benefits from the support of others the Hope Programme is ideal for you. It provides  a supportive, friendly group setting which will give you the knowledge, skills and confidence to cope with many of  the challenges, frustrations, fears and sense of isolation that living with IIH can bring.  HOPE facilitators go through a training programme but more importantly they are a person who living with IIH. 

This programme may be helpful if you are living with IIH and would like to:

• meet others who understand what living with IIH is like

• build confidence in managing symptoms and setbacks

• learn practical self-management tools for fatigue, stress and pacing

• feel more hopeful and less isolated

• communicate more confidently with family, friends, employers, educators and healthcare professionals

What do people say about the Hope Programme?

For organisations and commissioners

 The Hope Programme complements clinical care by supporting the emotional, social and practical side of living with IIH. It helps people build confidence, connect with peers and take a more active role in self-management.

Are you interested in the Hope Programme for the people you support?