Harry is Britain’s Kindest Kid

Brave Harry Moseley from Sheldon in Birmingham has been voted Britain’s Kindest Kid, for his fundraising for Brain Tumour UK.

The eight year-old is living with an inoperable brain tumour but, despite the challenges he faces, he has helped to raise more than £10,000 for Brain Tumour UK by making and selling bracelets.

Harry started fundraising for his 55 year old friend, who was in the hospital bed next to him with the same condition. Now his achievements have made Harry one of five young people who were congratulated by the Prime Minister, Gordon Brown, on 7 October. And following a telephone vote, Harry’s dedicated work has been recognized for his outstanding achievements. Harry has won £1,000 in pocket money and another £1,000 for Brain Tumour UK.

Natasha Kaplinsky, presenter of Five News, says: “This is a really touching story.  Harry’s fundraising for his friend in hospital reminds us of how friendship can influence people to do brilliant things.  He’s a very kind little boy.”

Catch up with Harry’s story online today.

Cautious welcome for specialist brain cancer proton unit
18 August 2009

Brain Tumour UK has welcomed the Government's announcement that a specialist proton therapy centre is to be built in the UK over the next five years to treat brain and spinal chord tumours [1]. But these centres should be the focus of carefully designed scientific research to ensure that the true benefits of the therapy are measured. Furthermore, the therapy will not be of benefit to the most common brain tumours, including gliomas, meningiomas and secondary brain cancer. It will largely be used to treat rare tumours at the base of the skull, including chordomas and chondrosarcomas.

Proton therapy is a form of radiation therapy that has been in use since the 1970s. Proton particles have a large mass and should not spread so far in tissue with the result, in theory, that healthy, non-tumour tissue receives less harmful radiation. This means that a tumour could be given a larger dose of radiation than with normal radiotherapy, whilst causing less harm to the healthy brain.

But although the therapy is theoretically promising, Brain Tumour UK warns that there is a lack of robust evidence to show that it offers significant clinical advantage over modern radiotherapy. A substantial review of the evidence for proton therapy has concluded:

"The claim by proton therapy supporters that protons are the treatment of choice for chordoma and chondrosarcoma [tumours at the base of the skull] is no longer tenable based on the currently available evidence." [2]

Trevor Lawson, head of communications at Brain Tumour UK, explains: "The challenge here is that new technologies do not have to clear the scientific research hurdles that we apply to new drugs. Brain Tumour UK welcomes this announcement, but we need to be very clear that proton therapy is not a miracle cure for brain tumours. 

"The lack of robust scientific evidence to show that proton therapy offers significant clinical advantage over modern, radiotherapy is a problem. Brain Tumour UK wants the best for patients and the Government must ensure that this new centre undertakes high quality research trials that demonstrate whether this treatment really is the best and which patients are most likely to benefit."

Many of the most reported studies showing proton therapy benefit compared it with older, less precise forms of radiotherapy. Furthermore, proton therapy is of no benefit to the most common brain tumours including gliomas, meningiomas and secondary brain cancer.

1. Green light given to develop proton therapy services in England, Department for Health Press Releae, 18 August 2009.

2. Proton Therapy in Clinical Practice: Current Clinical Evidence, Brada, M., Pijls-Johannesma, M., and De Ruysscher, D., Journal of Clinical Oncology, 25 (8) 10 March 2007

 

Register ALL brain tumour patients, demands Brain Tumour UK
18 March 2009

Brain Tumour UK has launched a campaign to have all people who are diagnosed with a primary or secondary brain tumour registered in official health statistics. We estimate that more than 40,000 people affected by brain tumours are missed from the UK's official statistics each year.

And we predict that the brain will become 'the primary battleground against cancer' in the future, as the treatment of other cancers advances.

Here's our story:
In a new report published in March 2009 to mark Brain Tumour Awareness Month, Brain Tumour UK warns that thousands of patients each year are getting inadequate care because no budget or infrastructure exists to meet their needs, particularly at local level. Furthermore, research into brain tumours is woefully under-funded because they are perceived to be 'rare'.

Brain Tumour UK is calling on the respective governments and health services across the UK to ensure that all brain tumours are recorded in the official statistics by the end of 2009, so that effective care can be planned and delivered.

'Brain tumours, by virtue of their dangerous location, can impact on every characteristic that defines us as human beings,' says the charity's chief executive, Jenny Baker OBE.

'It is scandalous that thousands of people, many of them suffering very substantial cognitive and physical impairments as a result of their tumour, are largely overlooked because health services have not recognised their existence and complex needs.'

Brain Tumour UK's report - Register my tumour, recognise me - estimates that 48,000 people develop a primary or secondary brain tumour in the UK every year. The report is supported by experts from around the UK. See our campaigns page.

Although 8,000 primary brain tumour cases are recorded in the official Cancer Registry, studies have shown that half of all primary brain tumours are missing from the Registry. Consequently, another 8,000 tumours are not recorded. Some are malignant but others that are low grade or benign can nevertheless be as deadly as cancer.

Most surprising of all, secondary brain cancer is not recorded, even though for many cancer patients brain cancer may be the actual cause of death. Brain Tumour UK's review of post mortem studies leads it to conclude that around 32,000 people affected by secondary brain tumours are not properly recorded in the official statistics each year.

Secondary cancer in the brain is becoming increasingly common as advances are made in treating other primary cancers. 'In future, the brain is likely to be the primary battle ground against cancer because other cancers can hide from chemotherapy behind the blood-brain barrier,' says Mrs Baker. 'It is essential that our health services monitor this growing danger and prepare to fight it.'

 

Approaching brain tumours from the
twenty-first century
31 October 2008

Almost 100 delegates from throughout Scotland converged on the Beatson Centre for Cancer Research in Glasgow on the 31 October 2008 for a one-day meeting titled ‘Diagnosis and Management of Brain Tumours in the Twenty-first Century’ organised by the West of Scotland Neuro-oncology Group on behalf of the Scottish Adult Neuro-oncology Network (SANON) to mark International Brain Tumour Awareness Week.

The meeting opened with a welcome to Glasgow by meeting organiser Dr Willie Stewart (Consultant Neuropathologist, Glasgow) then moved onto the first session, chaired by Dr Robin Grant (Neurology, Edinburgh).

Speaking first ‘Of course he’s depressed- He’s got a brain tumour!’ Dr Alasdair Rooney (Psychiatry, Edinburgh) provided insight into the history of depression and its diagnosis. This was followed by an outline of his current research work on depression in glioma patients where, disappointingly, it appears to be a much under-recognised and, therefore, under-treated condition.

There then followed two talks on recent advances in diagnosis. First, Prof. Donald Hadley (Neuroradiology, Glasgow) provided a ‘Twenty-first century update on imaging brain tumours’ with a superbly illustrated talk which lived up to its title in informing delegates of how current imaging techniques are being employed not only to gain insight into likely diagnosis, but also to guide surgeons in theatre, for example in choosing the best area for biopsy sampling.

How samples of tumour tissue are handled and interpreted formed the basis of Dr Willie Stewart’s (Neuropathology, Glasgow) talk on ‘Towards individualized therapy in brain tumours: Glioma diagnosis in the twenty-first century’. In particular, the increasing role that examination of DNA has to play in identifying the type of tumour and, importantly, guiding best management was discussed with reference to the experience of the Neuropathology service in Glasgow where such investigations are now routine practice.

Bringing the morning session to a close, Jenny Baker (Brain Tumour UK) spoke on ‘Brain Tumour UK: Where next?’ informing delegates of the initiatives Brain Tumour UK and similar organisations are involved with in sponsoring research and education relating to brain tumours and in supporting patients and carers. A hope to foster links with groups in Scotland and extend the support strategies for patients and carers in the area was expressed.

Following lunch and delegates’ posters, Mr Ian Whittle (Neurosurgery, Edinburgh) chaired the afternoon session which opened with a talk on ‘Children’s Brain Tumour’s; How did we get here and where are we going?’ by Dr Dermot Murphy (Paediatric Oncology, Glasgow). Here the particular successes in improving outcomes in children with brain tumours were discussed. These were achieved through a number of means, not least of which being efficient networking bringing every centre’s limited experience and small case numbers together.

Advances in surgical management of gliomas formed the topic of Dr Phillipe Metellus’ (Nuerosurgery, Marseilles) talk on ‘Gliomas and brain location: impact on surgical management’; an exquisitely illustrated presentation which focused on the value of excising as much tumour as possible in improving patient outcome. Here the benefit of combining state-of-the-art imaging in planning surgery was illustrated by a case presentation and short video of a recent operation on a tumour next to the speech area of the brain where the patient was awake during surgery and perfoming tests to allow Dr Metellus to minimise the impact on the patient’s speech.

The meeting closed with Prof Roy Rampling (Neuro-oncology, Glasgow) illustrating the changing face of brain tumour therapy over the decades in a talk titled ‘Clinical application of molecular diagnosis in brain cancer’. Here the shift in emphasis from a ‘one size fits all’ approach to diagnosis and treatment of several decades ago to the current approach of identifying tumour type by DNA signature and tailoring management as appropriate was highlighted. In particular, the rapidity with which these considerable changes to approach and, with them, improvements in outcome have come into practice was noted with a desire to see further, similar advances in the next decade.

Overall, the meeting was hailed as a great success by those involved with a strong message emerging form each of the speakers of hope, not only for continued advances in the diagnosis and management of brain tumours in each of the specialist fields represented, but also for continued improvements in outcome for patients with brain tumours.

 

Cancer Campaigning Group urges Government to fulfil cancer reform pledges
25 February 2008

The Cancer Campaigning Group (CCG) – a coalition of the 40 leading cancer patient organisations in the UK, including Brain Tumour UK – is calling on the Government to fulfil its recent promises in the Cancer Reform Strategy (CRS).

Whilst the CCG supports and welcomes the CRS as a blueprint for the delivery of cancer services in England, CCG members remain to be convinced that the NHS will be able to deliver on the strategy’s promises within this timeframe and with the limited resources available.

The CCG has consulted its member charities and found a number of significant concerns from the members across many areas, including access to adequate funding for all aspects of services and research, effective commissioning and delivery at a local level. The CCG will continue to work with Government to ensure that these concerns are addressed. During the first year of the CRS, CCG will be monitoring certain priorities which will form the basis for eventual annual reporting. These priorities are:

• Overall implementation of the plan: The need for an effective implementation plan for the CRS with clear milestones for success by 2012.
• Specific project plans: Clear work plans for each of the new initiatives, such as Clinical Nurse Specialists, with clear objectives and timelines for delivery across all parts England.
• Effective commissioning: Clear steps towards ensuring effective commissioning by PCTs and Cancer Networks with evidence that these initial steps are proving effective.
• Funding: Sufficient funding to ensure access to all new treatments, areas of care, research and prevention strategies across England.
• Stakeholder engagement: Continued constructive engagement with the voluntary sector.

The CCG will host a series of workshops over the coming year that will address the four areas of prevention; treatment and care; information and support; and research. These workshops will involve CCG members, healthcare professionals, stakeholders, and other relevant organisations. Their primary function will be to inform the CCG’s annual reporting on the progress of the CRS.

Download the full Cancer Campaigning Group’s response