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.

The discussion will be open to all participants but joining Mr Lansley at the meeting will be a Consultant Neurosurgeon Garth Cruikshank and brain tumour patient Daryl Gittings.

Follow us on Twitter (@SDBTT) for live updates on the questions posed and the answers given.

If you would like to find out more about getting your voice heard in Parliament, email us at enquiries@sdbtt.co.uk

See the full interview here

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!

We have five extra places for the world famous  London Marathon  2012 available. You can sign up today and join Team SDBTT to take part in this fantastic challenge!

The fundraising for these places will be split 50/50 between SDBTT and Rhino Trust.

If you are interested in taking one of these places, please complete the online form with your details and your fundraising plans for raising the £2,500 minimum pledge.

Once we have received the completed form, and if selected to join the team, you will need to pay the £50 non refundable registration fee to confirm you place which you can do over the phone by credit card.

Don’t delay, complete the online form today for your chance to join Team SDBTT!

Following SDBTT’s very successful Dorchester ball in November 2010, Philip and Amy Matthews were the lucky prize winners of afternoon tea with SDBTT patron, Dawn French. Philip and Amy kindly donated the prize to Amy’s parents, Ming and Mark Carlisle and the pair met with Dawn, along with Neil and Angela Dickson at the beautiful Lanesborough Hotel. Thank you to Philip and Amy Matthews for bidding on the prize and we do hope Ming and Mark had a lovely time!

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