Samantha Dickson Brain Tumour Trust was proud to be part of a successful meeting of the All Party Parliamentary Group on Brain Tumour meeting yesterday (30 January 2012), attended by the Secretary of State for Health, Andrew Lansley MP.

Fifteen of our supporters and staff attended, along with representatives of other Brain Tumour Consortium charities, to quiz the Secretary of State over his plans for the NHS and to seek reassurances that the proposed new Health Bill will not set back brain tumour care.

The packed meeting was chaired by James Arbuthnot MP and started with short presentations from Professor Garth Cruickshank, Consultant Neurosurgeon and brain tumour patient Daryl Gittins.

Prof. Cruickshank appealed to the Secretary of State to ensure that the NICE’s Improving Outcomes Guidance remains an integral part of the care pathway and stressed the need for earlier diagnosis, citing evidence from Birmingham which shows that 85% of brain tumours initially present, not through Primary Care, but through casualty.

Daryl outlined his differing experiences in Swansea and London explaining that his initial NHS Oncologist in Swansea made crucial decisions without any input from him. Ultimately these proved to be inappropriate whereas the treatment he received in London turned out to be less complicated and more suitable.  He questioned why patients so often have to rely on the charity sector to navigate the post code lottery which exists in the NHS.

Mr Lansley responded by setting out his vision for the future of the NHS in relation to Brain Tumour care.  He outlined the three pillars of his proposed reforms starting with ‘no decision about me, without me’ to address Daryl’s concerns and he explained how shared decision making processes, such as new patient decision making aids, were already starting to help, for example on prostate cancer.

Pillar two focuses on decisions being made by health professionals, not politicians and Mr Lansley explained how he sees new quality guidelines and stronger Cancer Networks will achieve this in a post Primary Care Trust NHS.

Pillar three, he explained, focuses on how best to deliver improved outcomes. He stressed that it is unacceptable that the UK lags behind comparable European nations when it comes to Brain Tumour outcomes and stressed that ultimately he wants survival rates for Brain Tumour Patients to be better in the UK than in Europe.

You can read our live twitter feed from the event at http://twitter.com/SDBTT.

Download our full press release: APPG event full press release.

Samantha Dickson Brain Tumour Trust is very grateful to everyone who attended the event, and we are looking forward to the next of our policy events on 29th February. If you might be interested in attending or finding out more about this, please contact: chawkins@sdbtt.co.uk.

Sarah Lindsell, Chief Executive, said: “I am delighted that the Secretary of State has confirmed that he will be attending the All Party Brain Tumour Group. This is an opportunity for members of the Brain Tumour Consortium, our member charities and clinicians at the sharp-end to get involved in a discussion around the issues raised in our manifesto such as the importance of early diagnosis, the importance of sharing best practice and the need for more research into brain tumours. When it comes to the fight against brain and CNS tumours there is always more to be done because the issue has such an impact on so many lives but it is encouraging the Secretary of State is committed to listening to the people who know most about it.”

Read the full press release here

SDBTT staff and supporters will be attending.  We still have a few places available – if you’d like to attend please find out more here and email Clare Hawkins (chawkins@sdbtt.co.uk)

Applications, assessment and awards will be managed and run through our AMRC-approved grant round process.

Applications are invited for £40,000 – £215,000 for fundamental science, translational, population-study, health services and psycho-social / quality of life research across all types of primary brain tumour.

In this grant round, we are asking the research institutes to seek additional contributions to projects as matched funding, so that together we can increase the total levels of funding for brain tumour research in the UK.

The deadline for submission of outline applications is mid-night on Wednesday 7 March 2012. Click here for more information.

PS We’re currently recruiting new lay members  to our grant panel – if you think you might like to get involved in this way and would like to receive more information please email research@sdbtt.co.uk – we’d love to hear from you!

SDBTT are delighted to tell you that Sharon Sambrook, whose son Ben was diagnosed with a brain tumour aged just seven, has received the prestigious Tesco Mum of the Year Award.

After Ben was diagnosed with a brain tumour, he underwent gruelling treatment including a six hour operation, radiotherapy and chemotherapy which was administered by Sharon at home.

Ben, now 12, has had clear scans for the past four years and in recognition of the support his mum gave him,  decided to nominate her for the Tesco Mum of the Year Award.

With a tough judging panel including Arlene Phillips, Denise Lewis, Emma Forbes and Tara Cain, Sharon beat thousands of other nominees to receive one of seven Mum of the Year Awards.

Sharon will be presented with the award in March, and we can’t wait to hear all about it!

Read the full press release which summarises the study from WCRF.

Commenting on the press release, SDBTT CEO Sarah Lindsell said:

“With so little known about the causes of brain tumours, we welcome all research into this area.  We were very interested to learn of the study suggesting an association between higher blood pressure and certain types of brain tumours, although we note that there are some limitations to the study.

“As they state, further research is required to confirm and understand any link and how this finding could be applied to prevention or treatment of brain tumours.  We, as a charity, are determined to continue to raise more funds to find a cure, better treatments and more understanding of the causes of brain tumours that devastate so many lives.

“We would also want to highlight that the risk of brain tumours for all groups in this study was low.  We would not want the public to be unduly alarmed by this as the vast majority of people with high blood pressure will not develop a brain tumour.”

Studying the causes of brain tumours in children: SDBTT-funded research presented at NCRI 2011

Brain tumours were high on agenda at this year’s National Cancer Research Institute (NCRI) conference in Liverpool, which included an entire session of talks on ‘New insights into the biology and management of brain tumours’.

Showcased research included SDBTT-funded work by Professor Paolo Salomoni on the role of ‘autophagy’, a process used by cells to recycle damaged cell components and produce energy.
See the NCRI scientific summary here
Read more about this project here

SDBTT-funded research undertaken by Professor Steve Clifford’s team at Newcastle University showed how medulloblastoma brain tumours in children may be divided into low, medium and high risk groups according to their specific molecular make-up, paving the way for clinical trials for new treatment schedules to reduce debilitating side effects whilst maximising survival.
See the NCRI scientific summary here
Read more about the research project here and the development of systems to test tumour samples during the clinical trials here

Finally, Professors Patricia McKinney and Jill Birch’s findings from their SDBTT-funded project piloting the techniques needed to perform a large scale study looking into the causes of brain tumours in children and teenagers were presented in a scientific poster.
See the poster here
Read more about this project here

This type of treatment allows surgeons to precisely target otherwise inoperable tumour types, such as those found in the brain.

Funding this kind of treatment means that 1,500 patients will be able to benefit from this new therapy.

As Britain seriously lags behind other countries when it comes to cancer treatment, this investment is a bid to help make the UK’s treatment world class.

Read more about this story here.

We were thrilled that in mid – November two of our supporters were successful in securing articles in two nationwide publications.

Karen Reep, whose son Ben was diagnosed in 2009 with a brain tumour has recently created a fantastic 2012 calendar with 40 mums posing nude in a series of wonderful photographs. The calendar and the ladies featured in a three page article within the Sunday Mirror Magazine on Sunday 20th November.

Tasha Floyd was diagnosed with a brain tumour at 16 and sadly went blind as a result. In an article with OK! Extra on Sunday 20th November, Tasha explains her story from diagnosis to where she is now, aged 20.

Read the full versions of both articles here.

Whilst this is fantastic news for a range of cancer patients, it is disappointing to learn that brain tumour survival rates have shown very little improvement over 40 years.

Brain tumour research receives less than 1% of cancer research spending in the UK, meaning that the answer to increased survival rates is greater investment into a range of high quality research projects.

To read the full article on this story, please go to the link below;

Cancer survival: Macmillan hails major improvement

Two thirds of adults now aware of the symptoms of brain tumour in children

New research by HeadSmart shows that awareness of brain tumour symptoms in children and young people has improved. Over two thirds (71%) of adults are now aware of the eight main symptoms of a brain tumour in those under eighteen.

However the survey by the campaign, which aims to raise awareness of brain tumour symptoms and speed up diagnosis rates, also revealed that 36% of respondents wouldn’t discuss concerns with their GP.

Brain tumours remain the leading cause of cancer deaths in children and the symptoms, which can be similar to those of other illnesses, are frequently mistaken for less serious conditions. 500 children and young people a year are diagnosed with a brain tumour – nearly ten a week – and a quarter of all child cancers occur in the brain. On average it takes three months for a child to be diagnosed in the UK – three times longer than in the United States.  Delays in diagnosis contribute to a higher death rate and lifelong disability, which child brain tumour survivors are ten times more likely to suffer from than well children.

GP Dr Maureen Baker CBE said:

“Whilst the results show an encouraging growth in parents and carers being aware of the symptoms of a brain tumour, it is worrying that 36% of them would not consult their local GP for more information or to have their child examined.

“We are not sure why parents and carers are hesitant about seeking professional advice but they shouldn’t be. We would urge any person who is worried about a child to look at the HeadSmart website (www.HeadSmart.org.uk), request one of our symptoms cards and seek advice from their doctor.”

The HeadSmart Campaign continues to receive fantastic support from the Royal College of GPs in helping to raise awareness of the symptoms of brain tumours in children and young people.

ENDS

For media inquiries, please contact Zoe Thorogood, Esme Knight or Tim Connolly on 020 7618 9185 or at headsmart@luther.co.uk

Notes to Editors

1. The Royal College of Paediatrics and Child Health, the Samantha Dickson Brain Tumour Trust and the Children’s Brain Tumour Research Centre at the University of Nottingham joined forces to create a major campaign – HeadSmart – raising awareness of the symptoms of brain tumours in children and young people. The campaign was launched on 8 June 2011 and targets clinicians, parents, carers and young people, educating them how to recognise and diagnose the symptoms of brain tumours. Brain tumours are the leading cause of cancer-related death in children and can increase the chances of long-term disability, which early diagnosis can help prevent.
2. The HeadSmart project is supported by the Royal College of GPs.
3. An evidence based best practice guideline The Diagnosis of Brain Tumours in Children, endorsed by Royal College of Paediatrics and Child Health (RCPCH), for the referral of children with suspected brain tumours has been developed and is available from www.HeadSmart.org.uk
4. The process used by the Children’s Brain Tumour Research Centre at the University of Nottingham to produce the ‘Diagnosis of Brain Tumours in Children’ guideline has been formally approved under the NHS Evidence Accreditation Scheme, assuring staff that they are accessing some of the best information available online to make informed decisions about patient care.
   1. The HeadSmart project is funded by The Health Foundation and Samantha Dickson Brain Tumour Trust
   2. The most typical symptoms of brain tumour in children and young people include:

• Persistent or recurring vomiting
• Persistent or recurring headaches
• Deteriorating vision
• Blurred or double vision
• Poor balance and co-ordination
• Abnormal eye movements
• Fits or seizures
• Behavioural changes, especially tiredness

In older children or teenagers, symptoms can also include slow or late start of puberty.

1. For further enquiries about the campaign, or for media enquiries contact the HeadSmart communications team on headsmart@luther.co.uk or 0207 618 9185