Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
Today’s prompt is as follows:
Create a “care page” – a list of your best resources that someone who is newly diagnosed could go when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!
This is a particularly difficult prompt for me because as I have mentioned before my condition is rare and as a result there are not that many resources out there for conditions like mine. However, I will try and give it a go!
The first resource that I would recommend would be the Brain and Spine Foundation‘s Website.
The website is for anyone who suffers with any brain or spine conditions. As well as the website, the organisation also runs a helpline, where you can contact a nurse specialising in neuroscience, either by phone or email. This service offers the opportunity to gain answers to any questions patients with brain and spine conditions have or simply gain emotional support between appointments with their consultants. The organisation also offers various factsheets and booklets explaining a wide variety of neurological symptoms, investigations regularly used by neurological consultants (e.g. MRI scan) as well as advice on how to live with neurological disorders. They even offer a sheet on questions that may be of use to asking doctors, whether it would be with your General Practitioner or with a neurologist. Great for self-advocacy or advocating for someone you love!
Another great resource for anyone newly diagnosed with a neurological disorder is NeuroSupport a charity offering non-medical advice for those with neurological conditions and their families and carers. The charity is based in Liverpool, UK, however their website offers information and links to other resources for anyone living in the UK.
If anyone living in the UK, wish to campaign for better services for those with neurological conditions, then the Neurological Alliance is an excellent resource for advocacy and self-advocacy for both patients, carers and the wider family. The Alliance works with 70 other brain and spine charities to help give patients a voice both locally and nationally.
Those are the key resources that I have personally found. Unfortunately, there does not seem to be many key charities or organisations for those with neurological conditions, and as a result not that many resource that I could find or have helped me. The resources that I have found are for neurological conditions in general as there are no specific organisations for a condition like mine. If any of you know can sign post and me to other organisations then please get in touch and leave details in the comment section below!