Neuro Specialists and Healthcare Professionals…we need your help!
At HBA Support, we’re here to support individuals and families affected by brain aneurysms.
We know how frightening being diagnosed with a brain aneurysm can be. And when the familial condition is confirmed or it is suspected as hereditary, then this worry and concern can be compounded. We also know important it is to have access to balanced information that focuses on the options available and the practical steps to safeguard patient and family health.
Our community tells us that they can sometimes struggle to find the right information and support at the right time. When they are considering screening, coming to terms with a possible familial/genetic disease and when they want to make an informed decision about their health and next steps, they often feel lost and alone.
Many turn to unreliable or contradictory sources online, often encountering misleading or frightening information at their most vulnerable moment.
This can lead to:
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Patients arriving anxious and misinformed
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More clinic time addressing misconceptions
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Challenging conversations about screening and treatment options
Together, we can change this and improve patient support
We Need Your Input
We want to create an informative, balanced guide specifically designed for newly diagnosed patients and their families, that you would be happy to use in clinic and share with your patients.
Creating a resource that works for
your Clinic
We want to work with UK neurovascular teams, as well as people diagnosed with familial brain aneurysms, to develop a practical guide that will give people balanced information to help them understand their diagnosis and their options and signpost them to further trusted resources.
We hope this will help your work in clinic by:
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Reducing patient anxiety and isolation
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Helping patients arrive better prepared and informed
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Supporting and reinforce your clinic conversations
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Addressing common questions
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Giving patients reliable information to share with their family members
Who We're Looking For
We need your help please if you are:
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Neurovascular nurse specialists
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Neurosurgeons
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Neuro Interventionalists
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Neuroradiologists
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Other healthcare professionals supporting patients with hereditary brain aneurysms, such as genetic counsellors.
Express Your Interest
Please email rebecca@hbasupport.org before December 31st 2024 if you would like to support.
We'll share more details about the workshop and how you can be involved.
Please help us to create this much needed guide. Together, we can ensure patients have the trusted information and support they need, when they need it most.
Know colleagues who might be interested? Please share this page.
What We’ll Create
The guide is being produced by Mearns and Pike, a specialist communications agency who is highly experienced in bringing together patient and clinical groups to produce useful patient and clinical materials within the NHS. Our guide will be available as a hardcopy for clinic use, available online and shareable with patients and families.
Here's an example of a similar guide that they have put together to give you an idea of what our final guide could look like.
This guide is being kindly sponsored by Medtronic
Proud to be a part of
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