At the Brain & Spine Foundation we support people whatever their neurological problem, diagnosed or not, rare or common, wherever they are in the UK and we’re there from the start and whenever people need us along the journey. We’re helping people to be more informed about their health or that of their loved one, and to better manage their life with a neurological condition. We’re the only UK charity offering this kind of support.
We’ve been doing this for nearly 25 years now and I want to tell you a bit about the next stage in our development as an organisation.
We listened to the people who benefit from our services and used this information to develop a new strategic plan. 12 million people in the UK have neurological conditions and we want to reach out to more of them to make sure they get the support and information they need, when they need it. Last year we helped people with 150 different neurological conditions, yet we only cover 30 of these with our information resources. So we’re going to provide information on a greater range of conditions with our booklets, factsheets and multimedia resources like apps and videos. We’ll also develop more support for the conditions we’re expert in, like subarachnoid haemorrhage (SAH), Chiari malformation and dizziness/ balance problems. We’re going to recruit more neuroscience nurses to our helpline, so we can answer EVERY call with our expert help.
“I have found great information and support from your organisation. Having two rare neurological conditions I am forever grateful that the organisation looks at so many conditions rather than those that are well known and supported. It’s taken a while for the correct diagnoses and treatment but I've felt your organisation with me every step of the way.”
We know that bringing people together who’ve had similar experiences can be so beneficial for reducing isolation and having someone to share tips with. So we’re developing ways we do this. During 2016 we’re running a conference for patients and families on SAH and setting up a Facebook group for people affected by Chiari.
Neurology is a big problem in the UK and the numbers are growing, so we’re doing more to increase awareness and understanding of neurological problems and the needs of people affected. This includes reaching out to health professionals and communicating effectively with the public about these issues.
Joanne Lawrence, Executive Director at the Association of British Neurologists.
"It's a great help to us to know that we can direct anxious patients and their families to the resources on your website."
At the same time we’re fundraising like mad to make sure we can do all this work, and more! We want to thank all our supporters who run, walk and swim to raise money, who give regular donations and all the other amazing things that go on to help us help people with neurological problems. If you want to get involved then check out our website for ideas or please give a regular donation - it all adds up.
We’re working hard to improve the quality of life of people with neurological problems and their families. Join us and help make things better.