News archive 2014
Whether you’re joining the group of patients and carers currently bowling in Sheffield or not, there’s still reason to celebrate. This get together is a special one. It’s our 100th Meet Up!
We started having Meet Ups a few years ago so that the brain tumour community could come together, meet others in the same boat and share their experiences in an informal setting. We didn’t want to go down the support group route- we offer this personally, at any time. So instead we decided to arrange afternoon teas and evening meals, anything that will bring anyone affected by a brain tumour together with others who truly understand.
Our Meet Ups have grown over the years and, as our 100th happens now, we’ve realised they’ve had 1500 attendees. That means that we have 1500 friends who we see regularly and who, perhaps unknowingly, have been vital to other people’s journeys, as others have to theirs. Because, although these Meet Ups are mainly all about fun, they perform another significant function. They make people feel less alone and less afraid in the face of a confusing and isolating brain tumour diagnosis.
Read full storyCategory: Charity News | Published: 5 May 2015
All throughout last month, Antony Evans and Ian Phillips, two of our incredible supporters, asked people to shave, donate and nominate for brain tumour support.
Five years ago Ian was diagnosed with a brain tumour and we’ve been supporting him since. So, the boys not only wanted drum up some funds for brainstrust so that we could support more people, but also wanted to communicate more awareness of the traumatic effect cancer has on its sufferers and families through a campaign more empathetic than those previous.
“We believe 'Movember' has maybe run its course, and promoting growing hair, which never actually happens in the treatment of cancer to our knowledge, is just a bit odd. We're not aware of patient’s symptoms, of any disease, feeling like they've had a bucket of iced water poured on their heads either!!! We believe this is a far more empathetic and compassionate way of communicating the issues of chemotherapy treatment surrounding the condition that is cancer, a disease that Fig (Ian) continues to battle bravely"- Antony Evans, Shavepril organiser
Read full storyCategory: Fundraising News | Published: 1 May 2015
Three years ago my sister Caroline was diagnosed with a brain tumour. It was brainstrust she turned to for advice and guidance during a period where she felt very isolated and uncertain as to what the future held. Via Helen and the team, she was able to meet up with Andrew McEvoy (top neurosurgeon) and receive leading edge treatment - gamma knife radiation. This helped to arrest the growth and start to kill off parts of the tumour.
Caroline and her husband Richard started to attend the brainstrust meet ups and share their experiences with others. I was keen to help in any way possible. Having taken up cycling 5 years ago - and having watched the London Olympics - it seemed logical to try RideLondon.
"Experiencing the Olympic cycle route on closed roads and raising funds for a great cause was very compelling!"
So together with my cycle partner Duncan Aitchison, we trained and raised money via JustGiving. Together we raised close to £5k for brainstrust.
Read full storyCategory: Fundraising News | Published: 28 April 2015
We know how overwhelming it can feel when you or someone you love is living with a brain tumour. Take this opportunity to slow down, let go, and enjoy a creative, fun morning with wonderful people who truly understand.
By popular demand, Michelle Charles will be running another two-hour drawing workshop on May 11th for the brain tumour community.
- Who is this workshop for?
This workshop is for you, our brain tumour community. Whether you have lots of experience, or have not drawn since school, come along. No prior experience is necessary.
- What to expect of the session
Expect to have some fun. We will be doing some really simple exercises that are designed to enable relaxat ion and joy.
- What to expect after the session
Expect to come away with a little surprise gift, courtesy of brainstrust, and some newly aquired creative skills.
- What to bring
If you’ve taken the first workshop please bring...
Read full storyCategory: Charity News | Published: 12 April 2015
- Who is this workshop for?
You’re tired of being asked questions about what it’s like living with a brain tumour and not seeing any real change or improvement afterwards. We call this ‘weighing the pig’; it keeps being weighed. Now it’s time for change.
After years of listening to you, the people that need us, and reviewing the journey that you face following a diagnosis, we’ve been able to pinpoint changes that need to be made during your care. Changes that will improve your quality of life.
You’ve told us that lack of information and support during recovery, for instance, is a real issue. So we've focused on improving the delivery of neuro-rehabilitation in order to address this. Our recent publication Quality of life: what the brain cancer community needs outlines the current gaps in neuro-rehabilitation and proposes changes that will ensure you’re better informed about the progression of the disease and about what rehabilitation options are available/what their purpose is.Category: Charity News | Published: 26 March 2015The Patient Information Forum (PiF) is the UK’s largest membership organisation for people working in consumer health information. They've recently published a toolkit to help professionals with creating health information that works.
The toolkit brings together guidance for best practice, with practical resources, and evidence behind the statements. It contains case studies from information producers illustrating how they approached the key steps within the guidance.
During the making stages of the toolkit, PiF asked brainstrust to be a part of it by sharing a case study. We chose to share information about why our Patient Guide is an example of how to ‘Communicate information clearly’.Megan Hill, Head of Support at brainstrust has said-"We were thrilled to be invited to share our best practice and are proud to be part of this really useful tool, which will support the creation of better health information in the UK"
Read full storyCategory: Charity News | Published: 25 March 2015