On Saturday, we got together at London Zoo with a great group of families to launch ‘little brainstrust’ – our new service dedicated to helping families where a child has been diagnosed with a brain tumour.
This is the result of 7 years of accumlated insight at brainstrust, ongoing input from families, expert advice and an exciting collaboration with the Smiley Riley Fund.
Dedicated help with practical, emotional and financial challenges.
At brainstrust we know that a brain tumour diagnosis is a huge blow for loved ones, and this can be even more devastating when the patient is a child. The brain tumour diagnosis and associated treatments bring a huge range of difficult practical, emotional and financial challenges for the whole family and young survivors are often left with a number of disabilities or special needs.
Indeed, 500 children a year are diagnosed with a brain tumour, and there are innumerable families living with the disease. Two thirds of children diagnosed are left with a disability. Families can find communication difficult, and awareness of brain tumours in children is low; this is despite the fact that brain tumours now kill more children than any other illness in the UK.
It’s because of this that ‘little brainstrust’ is needed.
Helen Bulbeck, co-founder and director of services at brainstrust says, ‘When a family faces a brain tumour diagnosis, they have many unique challenges, particularly around communication, living with long term effects, feeling afraid and feeling alone. This dedicated, logical extension of brainstrust’s work will make sure that this group of people get the focussed help that they need. It’s also great that we’ve been able to find a partner to help us deliver the service. The Smiley Riley Fund was founded after 20 month old Riley Plant sadly lost his life to a brain tumour: they have first hand experience of the issues that we need to tackle.’
On Saturday ‘little brainstrust’ launched at the ZSL London Zoo where a group of children who’ve been battling a brain tumour, along with their families, joined us for a fantastic day out. It was a wonderful opportunity for families to meet others who really understand what life is like at every stage of the brain tumour journey, and also to find out more about how ‘little brainstrust’ can help.
At the heart of the service is the new ‘little brainstrust’ website. The site has information on everything that families need when faced with this devastating scenario from tips on communicating to advice on some of the financial help available. The partnership with the Smiley Riley Fund has also allowed us to launch a new dedicated fund that offers small grants to help with the additional costs that come from regular travel to hospital such as extra childcare and parking.
There’s a new Little Brain Box available free of charge that is full of really useful resources to help families keep on top of things as they deal with the diagnosis. And of course it’s all backed up by our 24/7 coaching led support available by phone or email. We will also be extending our programme of popular ‘Meet Ups’ to include events that are entertaining and useful to familes with children battling a brain tumour diagnosis.
Leaving no family feeling lost or alone
We’re confident that this new dedicated national service has the potential to leave no family feeling lost or alone in their journey. To find out more about ‘little brainstrust’ and how to support our work here, pay a visit to the dedicated website at www.brainstrust.org.uk/little-brainstrust
You can also find out more about the Smiley Riley Fund over at www.thesmileyrileyfund.co.uk