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News archive    2014   
  • 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, subacute 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
  • Brain tumour patients offered access to their treatment records through a new online information portal


    In 2012 you, our brain tumour community, asked for access to your cancer records, information which before was difficult to access.

    By working with you, Cancer Research UK, National Cancer Registration Service (NCRS) and healthcare professionals we have been able to develop a portal that can be used by patients to access and engage with their records.

    Why the Patient Portal is important

    All of our work aims to put you back in control following a diagnosis.

    By being able to access your records you will have more space to compute the information that your clinicians would usually just tell you in person. You’ll be able to fully understand what’s happening at your own pace and, by having this control, you’ll be able to have better and clearer conversations with your clinical team, something you’ve told us is of utmost importance to you. 

    How the Patient Portal works

    You can access your tumour records, held by the NCRS, through a special online portal. Here you’ll be able to engage with:

    • Tissue sample...

    Read full story
    Category: Charity News | Published: 10 June 2015
  • New data released yesterday highlights some of the issues surrounding brain and CNS tumours.

    We know relatively little about brain tumours, despite their significant effect on the population through long-term disability and years of lives lost.

    This is for several reasons.

    1. They are relatively rare
    2. They encompass a very large number of different types; the WHO’s latest histological classification of brain tumours [1] identifies more than 130 different varieties
    3. It’s hard to access brain tumours and this makes tissue biopsy and surgery difficult

    So this latest report published by Public Health England and Cancer 52 throws up some interesting figures which got us thinking. We already know that malignant brain and CNS tumours is one of the less common and rarer cancer sites that has the highest incidence and highest mortality. What we didn’t know is that malignant brain and CNS tumours is now considered to be a less common cancer, rather than a rarer cancer. Rarer cancers are when the incidence is less than 6 per 100,000 of population; less common when the incidence is greater than 6 per 100,000 of population. Malignant brain accounts for 9.03.

    If there is an upside to this report then it is that data...

    Read full story
    Category: Charity News | Published: 9 June 2015
  • Coffee and cake day raises £400 for brainstrust

    Last Sunday Gill Moore and Irene Clark, two of our amazing supporters, hosted a charity coffee and cake day in Glasgow.

    Irene, who has been involved in piloting a brainstrust counselling network in Scotland, wanted to raise funds after seeing the real difference that our support has made to the lives of those living with a brain tumour and their families.

    “Our coffee afternoon was great fun! Yes it was hectic, but as many of our friends and family have said, it was also a lovely way to spend a Sunday afternoon. Despite the rain and cold about 60 people came along, tucked into some fabulous cake and bought baking, preserves and raffle tickets, helping to raise the fantastic sum of £800, which was split between brainstrust and another charity. I'd recommend it to those thinking of fundraising. We will definitely be doing it again!"

    Carol, our support specialist in Scotland, went along to the fundraiser, taking a Brain Box and some other brainstrust resources with her, which were well received by the guests.

     “It was a really great afternoon. Delicious home-baking, great meeting and sharing our work with others and the magnificent sum raised by Irene will go to help even more...

    Read full story
    Category: Fundraising News | Published: 19 May 2015
  • Expert-led coaching workshops


    A brain tumour diagnosis is terrifying. We know.

    That’s why we’re running coaching workshops across the country to put you back in control.

    Become stronger, more resilient and communicate better through these sessions led by our expert coaches, who also know how hard it is to live with a brain tumour.

    Both patients and carers of any age are invited.

    It’ll be a safe space to talk and be heard, have improved well-being, and leave with some strategies to help cope with the challenges ahead.

    Upcoming workshops:

    • London, Monday 22 June, morning session
    • Reading, Monday 29 June, afternoon session
    • Glasgow, August 27, afternoon session

    More locations soon to be announced. 

    Book Today

    Places are free, but numbers are limited so available on a first come, first served basis with reserve...

    Read full story
    Category: Charity News | Published: 11 May 2015

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