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HOPE PROGRAMME FOR Idiopathic intracranial hypertension (IIH)
Idiopathic intracranial hypertension (IIH) is a lifelong condition that affects the brain and spinal cord and leads to symptoms like blurry vision, difficulty moving, and problems in how people think and feel. In the UK, over 150,000 people live with MS, affecting two and half times as many women as men, diagnosed in their thirties and forties.
The Hope Programme for IIH was launched in March 2020 when we pivoted to online due to the pandemic. Since then, the courses supported over 500 people to meet others, build confidence and better manage their IIH.
This programme is commissioned by IIH UK. As a social enterprise, we are proud to fund and deliver this programme every year using our profits and with the incredible support from our volunteers and staff.
Picture (left to right): Amanda Denton and Shelly Williamson, IIH UK trustees and trained Hope Programme facilitators
Amanda Denton is a Trustee and Research Rep for IIH UK. Amanda 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. She was a lecturer in Physiotherapy at Plymouth University and led an MSc in Neurological Rehabilitation.
Amanda completed Hope Programme for carers and contacted us in 2000 to explore opportunities to co-design programme for people living with IIH.
Shelly Williamson is the Chair of IIH UK. 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 she had to give it up. 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. She did just that and found the former 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, she now holds the position of Chair. 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.
A big thank you to Amanda and Shelly, and the hundreds of people who have completed the Hope Programme.
Impact to date
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.
The course deals with:
Goal setting and action planning
Looking for solutions to problems
Stress management (e.g. mindfulness and relaxation)
Fatigue management
Identifying strengths
Becoming more positive, grateful and appreciating life more
Healthy lifestyles (e.g. eating more healthily and physical activity)
Prioritising the important things in life
Communication skills
How does the Hope Programme help?
Our research has shown that after attending the Hope Programme for IIH participants report:
Being more hopeful about their future
Having more positive emotions
Fewer physical impacts of MS
Fewer psychological impacts of MS
Reduced depression
Reduced fatigue
What do people say about the Hope Programme?
“I’ve enjoyed the company and that we’ve had a laugh. The course tutors who also have MS have led us through many helpful suggestions and problem solving ideas. Brilliant!”
Research and further information
The course has been developed by Coventry University and funded by the MS Society.
Kosmala-Anderson, J Turner, A. & Clyne, W. (2016) Evaluation of the effectiveness of HOPE self-management programme for people living with multiple sclerosis. Disabil Rehabil. 2017 Jun;39(11):1114-1121. doi: 10.1080/09638288.2016.1181211. Epub 2016 Jun 9.
The online Hope Programme for Multiple Sclerosis courses are funded by Hope For The Community CIC social enterprise as part of our reinvestment strategy.
Benefits to organisations and commissioners
When people living with IIH attend the Hope Programme, they take a more active role in managing their health which can result in fewer consultations with healthcare professionals and more efficient and effective use of healthcare resources.
Are you interested in the Hope Programme for the people you support?