News archive 2015
It was announced yesterday that the NHS’s care.data programme has been closed as a result of Dame Fiona Caldicott's Review. Dame Fiona is our National Data Guardian and you can read more about the review by clicking here.
What was care.data?
The programme aimed to extract anonymised patient data from GPs to a central database held by the Health and Social Care Information Centre (HSCIC) to provide a picture of the care being delivered between different parts of the healthcare system and to identify areas where more work or investment might be needed. But the programme was controversial from the outset.
Ben Goldacre summed the programme's flaws up in 2014 by stating:
Read full storyCategory: Research News | Published: 7 July 2016
Number of brain tumour patients benefiting from stereotactic radiosurgery and radiotherapy treatment to double
The NHS has announced the award of new contracts for stereotactic radiosurgery and radiotherapy (SRS/SRT) – specialist forms of radiotherapy that can be used to treat people living with intracranial conditions, such as benign and malignant brain tumours. This means that the number of patients receiving these types of treatment will more than double over the next three years.
More than 6,200 patients a year are expected to benefit from these services by 2018/9, compared to just over 2,400 in 2014/15. The new SRS/SRT services are spread across all regions of England, improving access to services and making it possible to treat more people closer to home. You can view a full list of all of the services providers here.
Dr Helen Bulbeck, our Director of Services and Policy at brainstrust says:
"brainstrust is delighted that at last there will be parity of access for stereotactic radiotherapy. We were closely involved and influential in securing...
Read full storyCategory: Research News | Published: 21 June 2016
On Sunday 3 July Rebecca Standeven will be getting a huge group of people and dogs together for a walk around Westport Lake in Stoke-on-Trent to raise money for brain tumour support.
Rebecca knows how terrifying a brain tumour diagnosis is for a young family. In February of this year, whilst on holiday in Thailand, her dad experienced a seizure. When they returned home, he was having at least three seizures a day.
"It was so strange for my dad to have anything wrong with him as he’s the healthiest, fittest man alive for his age. He eventually went the doctors and they told him to go A&E asap. He had a CT scan which showed a small abnormal patch on the top of his brain, which they initially thought could be epilepsy. As the days went on all of his left hand became week and strengthless, and he couldn’t walk properly or move his left arm. He went for an emergency MRI scan. The results came back the following day as a brain tumour. We were so shocked. All our family and friends couldn’t believe it because...
Read full storyCategory: Fundraising News | Published: 14 June 2016
Results from the National Cancer Patient Experience Survey have today been published. This survey, published annually, is designed to:
- Monitor national progress on cancer care
- Provide information that could be used to drive local quality improvement
- Assist multi-disciplinary teams (MDTs), commissioners, NHS Trusts in improving patient services
- Inform the work of charities supporting cancer patients.
Every year we wait for these results to see what has changed for you - our brain tumour community. And every year we re-evaluate where brainstrust is positioned so that we can help change the agenda on your behalf. But we can’t win all the battles and this is evidenced in the 2015 results.
What the survey shows
Frustratingly, many of the findings show a worsened picture with no real effort to improve so this survey feels more like weighing the pig.
For example, in 2014 only 27% of...
Read full storyCategory: Charity News | Published: 7 June 2016
Being a carer is not a job you apply for. We know.
We also know that it’s also one of the hardest jobs you might have to do. And that’s why it’s so important that you get the support that's needed too.
A short break for carers
brainstrust has recently been working with After Umbrage, a charity dedicated to providing free, short breaks for anyone who has been looking after family members or loved ones with a life limiting condition. The charity’s founder Tara Belcher set up the charity after caring for her father through cancer and now wants to help carers who are facing a terrifying brain tumour diagnosis.
The charity is offering carers in our community free short breaks at the lovely Kingham Cottage, which is just 5 minutes out of Bath, situated in the stunning countryside.
Read full storyCategory: Charity News | Published: 18 May 2016
After many months of waiting, the WHO has published the new categorisation for brain tumours, which provides a more precise and accurate system of classifying brain tumours.
What does this mean for people living with a brain tumour?
For the first time the categorisation combines molecular information with histology (the type of tumour). This means that clinicians will be able to reach a more accurate diagnosis, a better prognosis and more focused treatment planning. It is a step closer towards personalised treatments as clinicians will be able to target therapies more accurately.
And for research?
This is a significant step forward for neuro-oncology research. Research and the development of new treatments will mean that patients can be better matched based on the molecular signature of their brain tumour. And of course, once the data about brain tumours is gathered we will be able to look at disease trends which may help us identify causes and risk factors.
The counter argument
Read full storyCategory: Research News | Published: 11 May 2016