Today for #CharityTuesday I’d like to introduce you to family-run brainstrust – a small charity with a big impact!
brainstrust is dedicated to improving clinical care for brain tumour sufferers and to providing coordinated support for patients, carers, family and friends in their search for treatment. The charity provides support at the point of diagnosis by giving detailed and helpful information. The charity has, this month, been awarded the Information Standard accreditation – this is a Department of Health sponsored scheme that gives an official ‘stamp’ to information on the internet and allows the public to feel confident that what they are reading is both accurate and up-to-date. brainstrust is one of only 126 charities in the UK to receive this accolade.
The work that the charity does is huge compared to the relatively small family team that runs it. The charity’s icon is Meg Hill – herself diagnosed with a brain tumour aged just 19. Her mother, Dr Helen Bulbeck, is the charity’s driving force – attending conferences, offering 24/7 telephone support and being a font of all knowledge and wisdom when it comes to the latest information on brain tumours. Meg’s brother Will Jones is also a vital part of the charity – working on innovative ideas to reach a wider audience along with many others supporters, fundraisers, trustees and patients.
Meg, one week after her surgery, with Professor Peter Black (who saved her life).
In the last year the charity has delivered a variety of interesting, useful and highly supportive services for people who are desperate for help. These include the newly launched Brain Tumour Hub – a database of ongoing clinical trials which patients and carers can search through to see whether there is something that they can become involved with. This is the most comprehensive database available and is updated regularly as brainstrust has close partnerships with key researchers throughout the UK. Also at the Brain Tumour Hub is a huge database of support services for brain tumour patients and carers covering everything from local support services through to financial support, online networking and bereavement counselling.
There are meet-ups where people suffering with brain tumours can speak to others in similar situations. In September the charity funded the launch and ongoing support of a brain tumour tissue bank in Glasgow which will allow, for the first time, any researcher or academic in the field to access vital tissue for ongoing medical discoveries.
On a softer level, brainstrust are also the driving force behind ‘The brain box’ – an incredibly useful resource that offers support as the patient journey unfolds. The box is sent to whoever needs it and includes – a brain book; somewhere that patients can record their journey and their medical intervention along with a book of tips about how to manage the ongoing treatment and associated emotions. It also includes a copy of the book ‘Living with a Brain Tumour’ written by Professor Peter Black, professor of neurosurgery at Harvard plus a pill box, a box of tea bags and, for young children, a crocheted red elephant which is brainstrust’s mascot.
brainstrust has published The Snaqgle Tooth Splat, an illustrated children’s story book, designed to explain to children who have just been diagnosed with brain cancer what a brain tumour is and how the doctors and their carers will fight it and provide brain tumour support. The book is available through brainstrust – link here