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News archive    2014   
  • Your chance to get involved with some interesting research about illness perceptions and quality of life.

    Francesca Smithson Evans, a trainee Clinical Psychologist at the University of Hull, is conducting an interesting research project about whether the way a brain tumour diagnosis is communicated can affect illness perception and quality of life.

    We know that quality of life is of utmost importance to our community. And, we’ve also recently been heavily invested in improving the communication of a brain tumour diagnosis and creating better conversations between clinicians and their patients.

    So, this project seems relevant to you, our brain tumour community, and below are details of how you can be a part of it.

    Click HERE to begin the questionnaire. 

    Read full story
    Category: Charity News | Published: 15 July 2015
  • brainstrust’s Dr Helen Bulbeck gives main lecture at the closing day of the BNOS conference

    On Friday, our Director of Services and Policy, Dr Helen Bulbeck, gave the introductory lecture at the 2015 BNOS conference. She presented to members of the clinical community, charities and healthcare professionals about how clinicians can best communicate a brain tumour diagnosis to their patients.

    We know that you want better, more honest conversations with your clinical teams, sooner. The lecture communicated the importance of addressing this, and shows methods to how it can be achieved by taking a ‘patient as the co-pilot, not passenger’ approach.

    Helen’s closing remarks, ‘say what you notice. Not what you think’ would give patients and clinical a much more equal role in consultations, if applied.

    This approach would help put you in control from the moment of diagnosis.

    And more control can mean a better outcome. We know.


    Read full story
    Category: Charity News | Published: 3 July 2015
  • The Brain Tumour Tissue Campaign presented to healthcare professionals at annual BNOS conference

    Today, leading members of the UK’s clinical community were encouraged to seek consent from their patients for resected tumour tissue to be donated for research.

    The presentation was delivered by Dr Kathreena Kurian, the lead expert neuropathologist for brain tumour research at North Bristol NHS Trust and Brain Tumour Tissue Campaign partner.

    Dr Kurian presented the importance of consent, using her own experience of having surplus tissue stored in neuropathological archives that could not be used for research purposes. She also discussed the processes of seeking consent, with ethically approved information sheets and forms, and the need to raise the number of patients consenting from 30 to 80%.

    The presentation was well received and many medical professionals approached brainstrust and the campaign’s partners shortly afterwards for more information about the consent forms, and the process of acquiring these, as well as to ask questions about the various stages in which consent can be sought.

    Clinicians, you can find answers to these...

    Read full story
    Category: Charity News | Published: 3 July 2015
  • David Mutton to take on Ironman 2015 for brainstrust.

    One of our amazing fundraisers, David Mutton, is soon to take on one of the most difficult one day sporting events in the world: Ironman, comprising a 2.4 mile swim, 112 mile bike ride and 26.2 mile run.

    It’s not the first time David has done something huge for brainstrust. In May 2011, he cycled from London to Paris to raise money for our support service.

    “When I finished London to Paris my first feeling was relief. I'd pulled a ligament/muscle behind my left knee on day 2 and I was in agony. There were points on the 3rd day when I thought about getting in "The Love Bus" (the minibus at the back) but then I thought to myself "David, there's thousands of people out there who are going through a lot worse than you did. You are not going to quit now!!!" My second feeling was a sense of accomplishment. I remember thinking "wow - you've had brain surgery and cycled to Paris" and now here I am in just under 3 weeks’ time about to enter Ironman, one of the most difficult one-day sporting events in the world”

    David’s training for next month’s challenge...

    Read full story
    Category: Fundraising News | Published: 25 June 2015
  • NICE's new guidelines for brain and CNS cancer. Our response:

    Yesterday it was announced that NICE has updated and redesigned its guidelines to support GPs to recognise the signs and symptoms of 37 different cancers and refer people for the right tests faster.

    The update, which is the first for 10 years, includes new guidelines for brain and CNS tumours.

    The new guidelines are:

    Consider an urgent direct access MRI scan of the brain (or CT scan if MRI is contraindicated) (to be performed within 2 weeks) to assess for brain or central nervous system cancer in adults with progressive, sub‑acute loss of central neurological function. [new 2015]

    Children and young people
    Consider a very urgent referral (for an appointment within 48 hours) for suspected brain or central nervous system cancer in children and young people with newly abnormal cerebellar or other central neurological function. [new 2015]

    Our thoughts:

    These guidelines overlay the red flags that currently exist for GPs for MRI scans, which recommend the specific symptoms and criteria required for referral.

    In this sense, the new guidance is good as it enhances what...

    Read full story
    Category: Charity News | Published: 24 June 2015
  • brainstrust research wins at National Cancer Information Network conference

    Two research posters, that we had significant involvement in at all stages, won awards at last week’s National Cancer Information Network conference.

    Firstly, our ‘Patient Information Portal’ poster, in collaboration with Cancer Research UK and Public Health England, won first place in the ‘Patient Choice Award’ category. You can read more about the ‘Patient Portal’ here.

    Our poster in collaboration with the James Lind Alliance to identify the top ten priorities for research in brain cancer also placed within this category, receiving third prize.

    What does this mean for brainstrust and our community?

    Not only is this a great achievement for brainstrust, as we continue to engage with and campaign for better research, but it’s also significant for the brain tumour community.

    It means that our research, which always puts your needs first, is...

    Read full story
    Category: Charity News | Published: 18 June 2015

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