Will Jones, Development Director, brainstrust
Like most adventures, ours at brainstrust started as a collaboration between family and friends. And 8 years on that’s how we are now, albeit with many more friends helping our cause…
One day in 2006, we were told my little Sister, Meg, had a brain tumour. This is where our adventure starts.
It was a terrifying, lonely time for Meg, for us and for our friends. There were lots of questions, and answers were hard to come by.
By questions, I don’t just mean the clinical stuff – that’s what Doctors are for (though they often have conflicting views too). We needed to know about other, equally important things like: Can Meg drive? What does this diagnosis mean for her, as a person, not a statistic? How will this affect us, her carers? What will things look like in the future? What can we do to help? Who can we turn to help? The list is endless.
Necessity: The mother of all invention.
Our first chapter has a happy ending – Meg’s fine now. She works with brainstrust, and you may even have met her at a PIF event. But the BIG THING in all this, was that we learnt how little there is in the way of truly useful, relevant support and information where the patient, or carer, is at the centre. There is a huge unmet need, and they say necessity is the mother of all invention… so this is where our work with brainstrust really started.
8 years on, and we’re helping thousands of people with a brain tumour, and their carers. We tackle the real issues that these people face. We have a community that tells us ‘what’s up’ and we work tirelessly to address these challenges. We do so through our supportive services and our work to change the way care is delivered.
Stats tell us there are over 55,500 people living with a brain tumour in the UK.16,000 more people are diagnosed each year. 20-40% of all cancers spread to the brain. Brain tumours are the biggest cancer killer of the under 35s. The disease is responsible for over 20 years of life lost in the typical patient, making it the most lethal cancer. What causes brain tumours is unknown and incidence is increasing.
Useful context, but all this stuff doesn’t help you on the day you are diagnosed.
We know a brain tumour diagnosis is confusing, isolating and overwhelming. We know these problems are exacerbated by not being able to access care and information quickly and easily. And we also know that access to proactive support, and good information can improve knowledge and understanding, reduce anxiety, increase preparedness for events, instill control and improve satisfaction with treatment in brain tumour patients. That’s why we’re really here.
We help brain tumour patients and carers to engage in their care so that they can take control and be confident that they are working towards the best possible outcome for their situation. Our relationships with our patients and carers enable them to face their challenges, so that they learn how to develop resilience and utilise resources to their full potential.
A light touch can make a huge difference.
We are helping 1500 patients and carers directly with our 24/7 phone and email service, and our website now receives over 80,000 unique visits a year.
Whilst there are other brain tumour charities, some of them larger, brainstrust is the only national charity dedicated solely to brain tumour support. And we are the only Charity in the UK that has placed a unique, patient-centric, coaching led model at the centre of their service. This means that with a light touch, we make a huge difference to the wellbeing and quality of life of those that need us.
To find out more, visit www.brainstrust.org.uk, call us on 01983 292405, or you can email me on firstname.lastname@example.org