News archive 2014
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
Last Friday, brain tumour patient Evelyn Elliot sold on a fundraising stall at the Cancer Centre in Edinburgh’s Western General Hospital in order to raise money for braisntrust. Evelyn handmade all of the items that she was selling, including Easter wash cloth bunnies (complete with cream egg) and knitted headbands, which she also sells all year round.
In September 2013, Evelyn was diagnosed with an aggressive grade 4 glioblastoma. After having surgery followed by 6 weeks of radiotherapy and a further 6 months of chemotherapy, she was able to stop taking medication, and hasn’t done so since August 2014.
Evelyn found not working due to the tumour and illness hard though, and has since turned her efforts to continuous fundraising for brainstrust.
“I have always been a busy person and during my time at work was never still so found it hard to sit and do nothing but knew how important the process was to enable me to get on with my life. My husband was the one that approached brainstrust as he was looking for some answers to my diagnosis and also a charity that I could raise money for to keep me focused”
Read full storyCategory: Fundraising News | Published: 25 March 2015
Lisa Connell, an inspiring brain tumour patient, has started up her own hair and beauty salon with a difference. Her business offers free hair and beauty treatments to others also living with a brain tumour. The salon, which is run from a converted spare bedroom in her house in High Barnet, was inspired by her own experiences.
Lisa herself was diagnosed with a brain tumour in 2007, and has had to completely re-design her lifestyle and work since, to allow for her frequent treatments and the varying energy levels that she experiences from the condition.
Helen Bulbeck Director of Service and Policy at brainstrust has said-
“Being diagnosed with a brain tumour is like no other diagnosis. It strikes at your very identity - you have to let go of the person you were and discover a new you. Lisa is amazing; not only has she done this but she is helping others to do the same. It is important that people hold on to what it is important to them and work can be a lifeline. So anything that helps people move to a more positive space is a gift. We are really grateful to Lisa for providing people with this opportunity."
Lisa, who is a...
Read full storyCategory: Charity News | Published: 19 March 2015
Saturday in Sheffield was life changing for families who are living with a brain tumour. brainstrust led a workshop where families were able to feel less alone, feel more resilient and able to communicate more effectively in the face of a brain tumour diagnosis.
Through thought-provoking workshops and activities (not a single powerpoint in sight) led by brainstrust’s own expert coaches, children and their parents gained new perspectives, discovered how to take control and move forward on their journey.
A new community was created and people left knowing what they need and how to achieve it.
‘It was liberating.’
‘There isn’t anything anyone said where I didn’t think ‘Oh yes – me too!’
‘Really, really insightful and uplifting.’
‘I feel so much better.’
Think you’ve missed something good? You have. But don’t worry, there’ll be more!
Read full storyCategory: Charity News | Published: 16 March 2015