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)

Monday 30th January, London:   Andrew Lansley to address All Party Parliamentary Brain Tumour Group

Health Secretary, Andrew Lansley, will explain how the new Health Bill will affect the treatment of brain tumours at an All-Party Parliamentary Brain Tumour Group meeting organised by the Brain Tumour Consortium on Monday 30th January in Portcullis House, Westminster.

Wednesday 29 February, London:   Summit to launch Brain Tumour Awareness month (March)

200 campaigners, clinicians, patients and politicians will mark the start of Brain Tumour Awareness month at a summit in London on Wednesday 29 February. The summit will focus on issues such as NICE’s improving outcomes guidance, early diagnosis and brain and CNS tumour research funding. For further information visit: http://www.braintumourconsortium.org.uk

These represent great opportunities to ensure issues around brain tumours get the attention they deserve, and if you would like to join us, let us know as soon as possible as places are limited (especially for the 30th January).  For further details, please email chawkins@sdbtt.co.uk or phone 01252 749990 and speak to Clare Hawkins or Julia Trusler.

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!

The Friends of SDBTT – Danielle McGriskin Group have already got their fundraising well under way and have organised a fun filled night of Zumba, which for £5 you can come along and join in with.

The event takes place at Ballymacrickett Primary School at 44 Scroggy Road, Glenavy on Friday 20th January, from 7pm – 8.30pm. To book your place, contact Amanda on 07795830669.

To have a look at the poster for more information, click here

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!

Tickets are just £8 for adults and £6 for concessions. The event starts at 7.30 pm.

For more information contact Kathryn Rose on kathryn.rose86@gmail.com.