Annual Review 2014-15 Providing support and information for people with neurological conditions
www.brainandspine.org.uk
You were there and you helped me to cope and to deal with the problems I was experiencing while I was trying to get a definitive diagnosis of my symptoms. I want to thank you for that.�
Our Mission The Brain and Spine Foundation aims to maximise the quality of life for people with neurological conditions and to reduce neurodisability by providing a national focus for information, education and research.
There is a wide variation of access to specialist neurological services across the UK for patients with neurological disorders. The likelihood of a patient with a neurological problem being seen by a neurologist can vary widely, and waiting times can
be excessive. This also varies with location, as specialist services are not available everywhere across the country, and the need to travel long distances to be seen by a neurologist can be very difficult with patients with a neurological condition.
Brain and Spine Conditions There are 350 different conditions of the brain and spine and together they affect more than 10 million people in the UK. These conditions affect both children and adults and in many cases have long term impacts without the prospect of a cure. Neurological conditions and associated treatments are often complex and difficult for those affected and their families. The Brain and Spine Foundation exists to provide information and to be there during diagnosis, treatments and in the longer term to answer questions and provide support throughout a patient’s journey. We are the only UK wide charity providing support on the full range of neurological conditions. The number of people in the United Kingdom with a neurological condition is set to rise as a result of our ageing population, and all of these people should be entitled to the care and assistance they deserve. We aim as a charity to leave no voice unheard, and aim to support patients along each step of their journey.
Achievements 2014-15 1. 3,205 people received support by phone or email from the neuroscience nurses on the helpline. 2. More than 36,000 people found information about neurological conditions, testing and treatments by downloading booklets and factsheets from the website. 3. Over 615,000 people visited the Brain and Spine Foundation website. 4. Expenditure on charitable services was maintained at 76% of overall spending. 5. Three new booklets were produced, ‘Subarachnoid Haemorrhage’, ‘Dizziness and Balance problems’ and ‘Head Injury’, as well as numerous factsheets on topics such as ‘Meningitis’ and ‘Chiari Malformations’.
One year after my SAH, I can say that often life seems purposeless, I would like to thank you for the hope you have given me” “Thank you for listening and not pretend that you are listening. It is important for someone who is experiencing so much pain for so long to feel that his problems are heard and understood” “I found the information invaluable. I have been treated in hospital, but without your website my family and I would have known practically nothing about the illness. We are very grateful.
Gaynor’s Story On the 13th November 2010, aged only 34, Gaynor suffered a subarachnoid haemorrhage, a rare and potentially fatal type of brain haemorrhage. Gaynor bent down to tie her young son’s shoelaces, and suddenly collapsed. The only symptoms Gaynor had suffered was a bad headache for three days, but she put this down to a busy lifestyle, looking after her four children. There were no other warning signs. The brain haemorrhage turned their lives upside down. Gaynor underwent
surgery to have the brain aneurysm coiled, and luckily, due to the support of the medical team and her family around her, made a fantastic recovery. She is now running the London marathon in aid of the Brain and Spine Foundation. “I will be running the London marathon for the Brain and Spine foundation, as without their support, I wouldn’t be able to do this challenge.”
Plans for the future 2014-15 marks the beginning of a new era for the Brain and Spine Foundation, in which plans to expand income and grow service delivery will start to be realised. Specific plans include: Expanding our helpline to meet the increasing demand for support for those affected by neurological conditions
eveloping our range of information D booklets and factsheets to cover more neurological conditions Publishing our mobile app to assist young people with acquired brain injury with their practical and psychological needs Outreach programme to provide face to face patient support and increase awareness of support services available A pilot conference for professionals and patients on Subarachnoid Haemorrhage
How you can get involved Bupa 10k run 5k Big Fun Run Dress down day
Brighton marathon Hold a bake sale
Spartan races
Great wall of China 5 aside football competitions Hold a coffee morning
Have a car boot sale Great North Run
Virgin Money London marathon Run to the Beat
Quiz
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Contact us for more info or sign up via our website: www.brainandspine.org.uk/fundraising-events
– FINFEST –
Finn passed away in February 2013, ten days after being admitted to hospital following an unprovoked attack on a night out. Finn, who was a police officer, was enjoying an evening out when the event occurred. It first appeared that Finn suffered a broken nose and no other injuries, but once he started to experience seizures and strokes, he was rushed to an Intensive Care Unit and then transferred to the specialist brain trauma unit at Queen Elizabeth Hospital in Birmingham. The team tried to save Finn’s life, but sadly he never regained consciousness following emergency surgery. A decision was made to remove his life support and Finn was surrounded by friends and family from the moment
he was admitted to the moment he passed away. He meant so much to so many, and because of this his friends started the annual music festival ‘FinFest’ in his memory. All money made from the festival is kindly donated to the Brain and Spine Foundation. “I’m passionate about raising money for the Brain and Spine Foundation to help those who have suffered brain and spine injuries like Finn and to prevent further preventable loss. I know the marathon is going to hurt...a lot, but I will be motivated by the fact that my blood, sweat and tears will go some way to helping others during their darkest hour.” – Finn’s friend Sarah
What can you do to help? The Brain and Spine Foundation receives no government funding and so relies on voluntary donations to continue providing information and support for the thousands of people who come to us for help. We are enormously grateful to all those people who contributed through donations, fundraising and volunteering in 2014-15. You could help too!
• Donate now through the website www.brainandspine.org.uk or text BASF21 with the number of £s you want to donate to 70070 e.g. BASF21 10 to give £10
• Take up a challenge in aid of the Brain and Spine Foundation! Go to the website for ideas: http://www.brainandspine.org.uk/fundraising-events
• Email us at info@brainandspine.org.uk to ask for a collection box...
• Call now on 020 7793 5900 or check the website for other exciting ways to get involved
What your money pays for…
£16 provides half an hour of over the phone support £50 provides one full set of information booklets to a hospital or clinic in your local area
£500 could provide vital online support for someone with a neurological condition
£5,000 allows us to operate the helpline for one month
Call to speak to a neuroscience nurse, for support, information or if you just want to chat.
www.twitter.com/brainspine www.facebook.com/brainandspine www.youtube.com/BrainAndSpineCharity Brain and Spine Foundation, Office LG01, Lincoln House, 1-3 Brixton Road, London SW9 6DE T: 020 7793 5900 / E: info@brainandspine.org.uk / Brain and Spine Helpline 0808 808 1000 www.brainandspine.org.uk Registered Charity (England & Wales) 1098528 A company limited by guarantee and registered in England (Company number 4432677)