Why it can be hard to convince the professionals
The Press Association reports a case in which a worried mother was able to convince her child’s doctors to agree to a brain scan – but only after a fortnight of multiple appointments and the child’s worsening illness.
Carly Hornbuckle was told four-year-old daughter Bella Flint’s condition was nothing serious. But the worried 25-year-old did her homework online and realised Bella could be suffering from a brain tumour. After finally convincing doctors of the seriousness of her condition, a brain scan revealed a tumour the size of a golf ball. Bella was suffering from Medulloblastoma – a brain tumour found in the cerebellum, which controls movement and balance.
There are two issues here that will be familiar to parents of children with brain tumours:
- Many GPs come across brain tumours rarely, if at all.
- Informed parents face an uphill struggle to convince medical professionals that their concerns are valid and ought to be listened to.
Bella Flint’s mother did the most important thing of all – keep going. Bella’s scans revealed the truth about her illness, but getting that far took persistence and the courage to seek a second opinion: that all-important second opinion secured Bella’s referral to Leicester Royal Infirmary for tests, and, ultimately, the scans.
You can read more about Bella and Carly’s experiences, and keep up to date with her condition, at the Tinkerbella’s Wishes website.
February 9, 2010
Posted in: News from BTA 
Dr Richard Simpson MSP marks International Brain Tumour Awareness Week
Thanks and congratulations to Dr Richard Simpson MSP for placing the following motion before the Scottish Parliament today:
S3M-5082 Dr Richard Simpson: International Brain Tumour Awareness Week and World Walk—That the Parliament notes that 1 to 7 November 2009 is International Brain Tumour Awareness Week; recognises the work in Scotland in developing the managed care network; congratulates the record number of 176 brain tumour and cancer-related organisations that have supported the International Brain Tumour Alliance’s week and walk this year, and also notes that, with dozens of events planned and a combined total of 150,598 walking kilometres achieved to date, they are in sight of the World Walk target of 200,000 kilometres, equivalent to going round the world at the equator five times.
October 30, 2009
Posted in: News from BTA
Royal Society of Medicine Symposium 11 November 2009
Every three years, the Royal Society of Medicine holds a one-day symposium on research and management of Brain Tumours. Following the success of the 2006 event, the next one will be held on 11th November 2009 at the Society’s headquarters, 1 Wimpole Street London. Click here for full details.
Topics to be examined include:
- cancer stem cells
- the origins of astrocytomas
- molecular and imaging biomarkers
- the development of new treatments
- advances in radiotherapy and radiobiology
- the management of cerebral metastatic disease
- advances in paediatric neuro-oncology
- developments from the NICE Improving Outcomes document
Key advances in research and treatment of brain tumours
October 30, 2009
Posted in: News from BTA
Can You Help Antisense Pharma’s Sapphire Study?
If you, or someone you know, has been diagnosed with recurrent or refractory anaplastic astrocytoma, and would like to take part in a Phase III trial to compare trabedersen (AP 12009) with standard chemotherapies, then Antisense Pharma would like to hear from you.
Phase III trials are large, multi-centre trials which aim at achieving a definitive assessment of a drug’s performance compared with the “gold standard” existing treatments. They are the last trials to take place before a drug is submitted to regulatory bodies for approval.
You can read Antisense Pharma’s full-length account of the trial by clicking here.
Details on how to apply for enrollment into the study can be read by clicking here. This page also includes the relevant email address at Antisense Pharma for applications.
You can download Antisense Pharma’s official press release about the trial by clicking on the following link:Â antisense_pm_sapphire_fach_en (you will need either Adobe Reader or Foxit Reader on your computer to open the file. Most computers will already have one or the other installed, but follow the links if yours does not).
September 14, 2009
Posted in: News from BTA
Medicine and Me Patients Conference – “Living With Pituitary Disease
The Royal Society of Medicine is holding another of its series of “Medicine and Me” conferences designed specifically for patients on Monday 12th October 2009. It’s called “Living With Pituitary Disease” and it’s a real opportunity for patients, families and carers to meet leading experts, catch up with the latest developments, ask important questions, discover services they may not have known about, access support and share their experiences.
Most of the audience will be made up of patients and their friends, families, carers and advocates, and a third of the audience will consist of doctors, specialist nurses and others involved in treatment and care of Pituitary disease.
If you book before 14 September, there are discounted “early bird” fees available of £25 for the whole day.
You can find all the details about the conference, including a list of all speakers and full programme, by clicking here.
August 25, 2009
Posted in: News from BTA
Congratulations to Nicole Witts and Her Fundraising Team
Nicole's Team In Freezing Fog on Snowdon
Nicole Witts, who was diagnosed with a life-threatening “benign” grade 1 meningioma, and her team have completed an extraordinary fundraising effort for Brain Tumour Action. Nicole had visited her GP eight times before her tumour was identified – she’d had to rebut a host of often insulting alternative diagnoses – and her eventual operation, which threatened her powers of speech, lasted eight hours.
Like so many brain tumour patients, even her successful operation has left Nicole with permanent after-effects to deal with, including memory problems, epilepsy and the loss of her driving licence, and with her recovery ongoing, she was unable to take part in her team’s successful crack at the Three Peaks Challenge.
The Three Peaks Challenge is an intensely gruelling 24-hour attempt to scale Ben Nevis in Scotland, Scafell Pike in England and Snowdon in Wales, with the driving in between the peaks estimated at a minimum of eleven hours. Nicole’s husband Gary was joined by brother-in-law Steve Rock and friends Matthew Pearcy, Keren Millia and driver Creighton Varney.
Nicole embarked on a remarkable round of consciousness-raising, publicising and campaigning to support the bid. Her media achievements included full-length articles in both the Leighton Buzzard Observer and the national News of the World.
Nicole Witts in the News of the World
Nicole also attracted interest from the television magazine programme This Morning and from the Daily Mail. She gave talks to schools and other organisations, and mobilised her network to attract an extraordinary range of sponsors and donors.
Fundraisers like Nicole provide the funds, the publicity and the momentum that will surely mean one day that people no longer have to undergo experiences like hers. With any luck, her media work will have taught lots of people about a cancer that is still very little understood or known about, and enabled some to make potentially life-changing visits to GP or hospital to get checked out. And the work and commitment of Nicole, Gary, Steve, Matthew, Keren and Creighton inspire us all to work and fight on until the job is done.
Deepest thanks and gratitude to Nicole and the team from everyone at Brain Tumour Action. Congratulations on an extraordinary job done.
August 21, 2009
Posted in: News from BTA
Long-Term After-Effects Of Radiotherapy
A team led by Dr Linda Douw, from the Department of Neurology at VU University Medical Centre in Amsterdam has published a long-term follow-up study of low-grade glioma patients which set out to track the cognitive and radiological effects of radiotherapy.
You can read a BBC News article on the study here.
The Lancet Neurology summary can be read here.
The Dutch team concludes that the higher ten-year survival rates of patients with low-grade glioma meant that radiotherapy held out considerable risk of lowering brain function further down the road. In most circumstances, radiotherapy should be deferred if at all possible.
Commenting in the same issue of Lancet Neurology, the Mayo Clinic’s Paul Brown and Jane Cerhan argued that improvements in the delivery of radiotherapy over the timescale of the study made its results hard to interpret.
The BBC quotes Dr Jeremy Rees, of Cancer Research UK, who says,
Surgery is generally a preferred option with chemotherapy or radiotherapy coming into play at a later stage, if the glioma progresses.
Continued research and increased knowledge about the disease is enabling us to treat it increasingly effectively while reducing side effects.
August 10, 2009
Posted in: News from BTA
Please Help theThird Annual Norfolk Family Walk
If you can make it to Norfolk in October and would like to help the International Brain Tumour Alliance’s “Walk Around the World” in aid of brain tumour awareness, then this is your chance!
Last year’s walk raised over £10,000 for Brain Tumour Action’s partner Astro Fund and they’d like to exceed that figure in 2009.
Download your copy of the poster here (it’s a .pdf file, so you’ll need either Acrobat Reader or Foxit Reader on your computer to open and print it) and put it in your window, on your workplace noticeboard and in shop windows etc.
For further details about this great event, call Christine Forecast on 01485 872767 or email forecast@sedgeford.eclipse.co.uk
July 29, 2009
Posted in: News from BTA
Brain Tumour Research News
Brain Tumour Research’s latest newsletter has just been published. Download your copy here.
Brain Tumour Action has been a partner of Brain Tumour Research right from the launch at the House of Commons in April at which we were represented. By bringing the brain tumour charitable community together, we can work in strength to fund the research into brain tumours that is so badly needed. BTR deserves all of your support – see the newsletter for ideas on how to help.
July 29, 2009
Posted in: News from BTA
The Big Wight Matter – September 2009
Brain Tumour Action is a partner of Brain Tumour Research and is throwing its support behind The Big Wight Matter – BTR’s big fundraising event on the Isle of Wight later this summer.
It’s taking place at the Brighstone Holiday Centre on the Isle of Wight and you, your friends and your dogs are invited to join in with the brain tumour community to raise money towards the vital research we need so badly.
You can read all about it here and download your own copy of the Big Wight Matter poster here to display in your window, your office noticeboard and anywhere else you can think of. (N.B. the poster is a .pdf file, and you will need either Acrobat Reader or Foxit Reader on your computer in order to open and print it).
Two fifteen-mile walks, taking in the breathtaking scenery and big skies of West Wight, can be done on two consecutive days. Much shorter walks will also be organised for little legs! Basecamp will be at Brighstone Holiday Centre, where additional entertainment and events will be provided such as music, a hog roast, BBQ facilities, swimming and the all important beer tent. You will be able to walk from basecamp straight onto the cliff paths and wherever possible walks will be off roads. A quiz/treasure hunt will be included and there will be a prize giving ceremony.
This event is being organised by brainstrust on behalf of Brain Tumour Research and its affiliated charities. For more information contact helen@brainstrust.org.uk or tel 01983 292405. Sign up at the Brainstrust website!
July 29, 2009
Posted in: News from BTA
