News archive 2014
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 storyCategory: Charity News | Published: 3 July 2015
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 storyCategory: Charity News | Published: 3 July 2015
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 storyCategory: Fundraising News | Published: 25 June 2015
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]
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 storyCategory: Charity News | Published: 24 June 2015
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 storyCategory: 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 storyCategory: Charity News | Published: 10 June 2015