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News archive    2014   
  • brainstrust's Patient Guide chosen as an example of best practice

    The 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 story
    Category: Charity News | Published: 25 March 2015
  • A huge thank you to our Edinburgh fundraiser

    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 story
    Category: Fundraising News | Published: 25 March 2015
  • Hair and beauty salon supports people with a brain tumour

    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 story
    Category: Charity News | Published: 19 March 2015
  • How we spent last Saturday: brainstrust's family-focused workshop

    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 story
    Category: Charity News | Published: 16 March 2015
  • 'Toby Teapot's Daddy has a Poorly Lid' goes live

    Following a high grade glioma diagnosis, Paula and Richard Middleton struggled to find a resource that would help them to explain Richard’s diagnosis to their young daughter. And so Toby the Teapot was born, a wonderful and beautifully illustrated book that helps children understand a loved one’s diagnosis or, as the book calls it, their ‘poorly lid’.


    Toby now stars in his own little video, which shows how the book so sensitively explains brain tumour symptoms and diagnosis to a child through the quirky characters.

    You can purchase Toby Teapot's Daddy has a poorly lid here and a donation from each sale will go towards brain tumour support. 

    Every brain box that we sent out to a family will also have one popped in, along with our own 

    Read full story
    Category: Charity News | Published: 13 March 2015
  • brainstrust's online support community reaches over 1000 members.

    Building a helpful and supportive community for brain cancer patients and carers has always been a priority of ours. By running a closed Facebook group, made up of members of this brain cancer community, we’ve enabled those who feel isolated and terrified to access instant support and understanding, from ourselves and from one another.

    We’ve seen our little group grow from strength to strength over the years, and now we’ve reached 1000 members. That’s 1000 incredible people who share their experiences, can relate to the problems and provide vital comfort and understanding to one another along this terrifying journey.


    Here’s what some of the members have to say about the group:

    “I found this page and am so glad I did. No one understands like you all do”- Patient


    “This site is the best .No one judges anyone . We are all in the same club or supporting someone in the club. I have good days and bad days but come what may we will all support each other .I have also realised there are people out here with the same problems. Which may sound silly but it makes me feel better, because I am not on my own” – Patient


    One member has even written an

    Read full story
    Category: Charity News | Published: 13 March 2015

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