News archive 2013
The results of the 2014 National Cancer Patient Experience Survey have just been published. The good news? Overall, cancer patients have a good patient experience. This is largely down to having a designated clinical nurse specialist (CNS) in charge of their care.
Brain tumour patients are the most engaged with research
We’re also thrilled that brain cancer patients are coming out tops for being involved in discussions about research (the scores ranged from 37% (brain/CNS and haematological cancers) to 14% (urological cancer)); and actually taking part in research (the scores ranged from 75% (brain/CNS) to 58% (lung, prostate and urological cancers)). Hurray, you guys, for leading the way!
Poor experience of brain tumour care
Brain tumour patients gave lower scores than any other cancer patients in a few areas, including: receiving understandable results; having things explained to family members; getting good support from the GP; having a team of healthcare professionals who work well together. Indeed, Only 55% of patients said the staff at their general practice definitely did everything...
Read full storyCategory: Research News | Published: 25 September 2014
On Saturday Simon Wayne and Duncan Aitchison are taking on the challenge of a life time as they cycle from London to Paris in under 24 hours.
Racing against the clock, they will ride relentlessly to reach centre of Paris to raise funds for our work to help people with a brain tumour. Simon says, 'brainstrust is providing invaluable help as both my Sister, Caroline and stepson, Liam have been diagnosed with a brain tumour. Without brainstrust's support I have little doubt that we wouldn't be receiving the care that we are today. Riding through the night (and the following day!) seems like a small challenge compared to what people have to go through once they are told they have a brain tumour. It's the least we can do.'
Training has gone well, and the amazing news is that once Gift Aid is taken into account, Simon and Duncan have now raised over £5000. What a result!
You can check out their fundraising, and sponsor Simon and Duncan here,
Read full storyCategory: Fundraising News | Published: 4 September 2014
Edinburgh researcher, Julia Day, to run 60 miles to the Commonwealth Games to help people with a brain tumour
On Thursday 31 July, Clinical Researcher Julia Day will be running an ultra-marathon – 60 miles from her home in Edinburgh to Glasgow to watch the boxing finals at the Commonwealth Games.
Julia will be joined by her boyfriend Roan, and they will be raising money for brainstrust and our work to help people with a brain tumour in Scotland. Julia, a Clinical Researcher in psychology based at the University of Edinburgh, is closely involved in brainstrust’s work.
This will be a huge challenge as neither Julia nor Roan have run more than a half marathon, but they are both determined to complete the run – or miss the boxing finals!
Julia says: People living with a brain or spinal cord tumour often experience physical, cognitive, psychological, mood and seizure related problems following treatment. The transitions that occur following treatment to regain a sense of normality and to improve quality of life are hard, and patients often feel they haven't received enough information, support or help. We are working with brainstrust to improve the protocols and pathways of referral for patients with a brain or spinal cord tumour for patients to receive the support and care they need. We are raising money...
Read full storyCategory: Fundraising News | Published: 30 July 2014
Congratulations to Liz Eldrige who has just swum across the Solent! And of course also to Stan Holloway for swimming both ways in 1:25:08 to Robbie Phillips 43:50 to Neil Phillips 45:59 with Liz being a brilliant 48:56.
04.30 alarm call, set off from Pitts at 05.00, with Stan leaving Colwell Bay at 05.45. Liz, Neil and Robbie joined Stan at 06.30 from Hursts after Stan did first leg in 42:54. Perfect conditions, light airs and the sun came out. On the way over to Colwell Liz's lucky Barn Owl arranged a fly past and during the swim a seal popped its head above water to say hello to the Mad M & M's in their assorted coloured hats!
Thanks to Darcy Muncer and Rhys Hunt our Kayakers who planned route, tides and safety, to Pete Summerhayes for being Rib Meister and also to Tom Davis and Gill Davis aboard the Mother Ship - Middle Watch for fending off cruisers and other passing vessels.
We are all very proud of Liz and we know her Dad and Jan are too! Thanks to friends for support ashore and to all of...
Read full storyCategory: Fundraising News | Published: 17 July 2014
Driving improvemants in Neurorehabilitation for people living with a brain tumour is huge on our agenda: improvements here are key to unlocking brain tumour support for thousands of people.
With this in mind we are growing a community of clinicians and researchers who are interested in this field. We know good rehabilitation and psychological care improves quality of life for people with living a brain tumour. And a better quality of life often means a better outcome.
But we know that this care is hard to get right. Our work to understand real issues that people with a brain tumour face has shown us this. Despite having had excellent treatment, people feel lost, confused and isolated. And this isn’t right.
We want to make things better. Our community is a conduit for people to solve collectively and collaboratively the issues that need addressing. A significant gap on the patient journey is survivorship; there is too much focus on surgery and adjuvant therapies and not enough follow up:
‘A disproportionate focus on surgical and oncological outcomes’
National Peer Review: brain and CNS...
Read full storyCategory: Charity News | Published: 4 July 2014
Lovely news - the Patient Information Forum has named brainstrust as member of the month. PIF is a great professional organisation that does a LOT of work with health and social care organisations, nationally, to drive patient engagement and understanding in healthcare.
In their own words, "PiF, together with its members, believes that high quality consumer health information should be available to everyone. Consumer health information isn’t just about leaflets and printed information. It’s much broader than that; it can be hospital signage, appointment letters, websites, informed consent, personal health records, patient education programmes, the list goes on. Good information engages people in their well-being, improves their experience and enables them and their families or carers to make choices about their lifestyle, treatment and the services they use."
You can read more about this latest accolade and what it means for brain tumour support,...
Read full storyCategory: Charity News | Published: 4 July 2014