Hannah, who runs the SDBTT Hannah Jones Fund with her family has raised a staggering £160,000.  She has been spurred on by the severe lack of funding into brain tumours and has made a significant difference to the research SDBTT has been able to fund.

Hannah, who has undergone three major operations on her brain has suprised everyone, including her doctors, with the recovery she has made. She is now studying at Chester university, whilst still finding time to carrying on fundraising and help raise vital awareness for brain tumours and the need for increased research and support.

Read the full article here.

Samantha Dickson Brain Tumour Trust (SDBTT) welcomes new Guidance governing how GPs refer suspected brain tumour patients for MRI scans which will improve outcomes and save lives which responds directly to calls from Samantha Dickson Brain Tumour Trust and other brain tumour charities for health authorities and Government to take action to speed up the diagnosis of the condition.

If busy medical professionals are able to act on the Department of Health’s (DH) new best practice guidance ‘Direct Access to Diagnostic Tests for Cancer’ (issued in April) it will go a long way to achieving one of the key aims of the ‘Manifesto for Everyone Affected by a Brain tumour’ – developed by Samantha Dickson Brain Tumour Trust and other brain tumour charities – earlier and better diagnosis of brain tumours.

In order to facilitate faster diagnosis of brain tumours, the new guidance encourages GPs to initiate a direct referral for MRI brain scan at the same time as initiating an urgent referral to a specialist and sets out the symptoms which would justify such a referral.

Sarah Lindsell, CEO of SDBTT, said “58% of brain tumours are presently diagnosed because of an emergency presentation with only 1% of patients diagnosed following an urgent GP referral for suspected cancer – this guidance is a major breakthrough to change these dreadful statistics in the future.   It has been a long-standing aim of Samantha Dickson Brain Tumour Trust to reduce diagnosis times for both adults and children, which is evidenced through our investment in our HeadSmart: be brain tumour aware campaign.  We hear devastating stories of late and missed diagnosis on a daily basis and welcome any action to improve diagnosis times for patients in the future as it will reduce long term disabilities and ultimately save lives.“

The guidance sets out three sets of symptoms, which since 2005 have justified urgent referral for a maximum 2 week wait, but which would now also justify direct referral to scanning. These are detailed in the notes but include combinations symptoms such as headaches, vomiting, posture change and blackouts. It does point out that clinical judgement is still required because while 70% of patients with a brain tumour will experience a headache during their illness the chance of a headache being associated with a brain tumour is around 0.09%.

At the same time it confirms that over the next four years an unspecified share of the £450m dedicated to the Improving Outcomes: A Strategy for Cancer will be dedicated to raising the signs and symptoms of cancer and fund increased GP access to diagnostic tests such as a MRI.

Sarah Lindsell added: “The challenge is not to ensure ALL GPs are aware of this new guidance, including the signs and symptoms of brain tumours, and implement it effectively.  Brain tumours kill more children and adults under 40 than any other cancer and we will promote this guidance to all GPs and people affected by a brain tumour to save lives.”

The Department of Health’s announcement is available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_133510

The SDBTT Alex Bolt Fund, one of our dedicated support groups, has recently presented a cheque for £85,000 to Samantha Dickson Brain Cancer Unit at University College London’s (UCL) Cancer Institute. The Alex Bolt Research Fellowship, currently held by Dr Steve Pollard, will conduct research into the most common malignant brain tumour and its treatment and this significant investment by the group, will make a real difference to the research being carried out.

Dr Pollard is at the forefront of research into cancer stem cells in brain tumours at UCL, noting that a great highlight for him has been the progress in looking for new drugs that could be used to treat glioblastoma, the most common and most aggressive malignant primary brain tumor.  The very latest cell imaging technologies and analysis tools have been used to identify drugs that can block the proliferation of glioblastoma cells without affecting normal cells.  The research has shown that certain drugs which block related proteins called kinases can stop GSCs multiplying in the lab. Such new ‘smart drugs’ may improve treatment for people with glioma brain tumours.

“This is really exciting progress in research into brain tumours.” says Sarah Lindsell, Chief Executive at SDBTT. “We are advancing daily in our understanding of how brain tumours work and are therefore better able to fight them with appropriate treatment.”

Hannah Jones, who helps run the SDBTT Hannah Jones Fund, has not only raised £160,000 but has just been awarded the Rotarian Young Citizen Award.

In a recent BBC video, Hannah was filmed talking about been diagnosed with a brain tumour and the fundraising that she organises. This very wonderful video was picked up by Russell Howard’s Good News. Take a look yourself, Hannah appears at 26.30 minutes in.

Russell Howard’s Good News

Around 1,500 cancer patients a year will benefit from a cutting edge cancer treatment – Proton Beam Therapy – that will be available in London and Manchester, Health Secretary Andrew Lansley announced today.

Up to £250 million will be invested by the NHS in building Proton Beam Therapy facilities at The Christie NHS Foundation Trust hospital in Manchester and University College London Hospitals NHS Foundation Trust. The Department of Health have set aside public capital for this scheme.

Given the complex nature of the treatment and facilities, Proton Beam Therapy won’t be fully available in England until 2017. Until then, the NHS will continue to fund patients in need of Proton Beam Therapy to go abroad – either to Switzerland or the USA. By 2014/15 the NHS will be spending £30 million per year sending up to 400 patients overseas.

Read the full story here: http://mediacentre.dh.gov.uk/2012/04/05/centres-selected-to-host-cutting-edge-cancer-services/

The Christopher Clarke Cancer Research Fund (CCCRF) is joining forces with Samantha Dickson Brain Tumour Trust (SDBTT) in a bid to increase the research into brain tumours and reduce mortality rates. The merger was officially announced on 31st March at Hope Hospital in Manchester.

CCCRF was set up by Christopher’s mother, Karen Clarke, after her son tragically succumbed to a brain tumour in 2006, with the aim of reducing the number of deaths by brain cancers by funding research. In the six years since Christopher’s passing, CCCRF has raised a staggering £320,000.

Karen told us that “Towards the end of his life I made a pledge to Christopher to try to help research into this truly frightening disease, which took his life cruelly at such an early age. He was very keen to raise money to enable research into the causes and treatment of a disease which, though uncommon, strikes down young people like him more than any other cancer.” Karen made the choice to merge with SDBTT following thorough research into brain tumour charities, saying “We have chosen SDBTT because they are the leading brain tumour charity.  We know therefore that the funds we have raised will be invested in the very best, highest quality research in the UK.  We are looking forward to merging with them to work towards a way to stamp out this cruel and devastating disease.”

Sarah Lindell, CEO of SDBTT, who attended the event along with other senior staff of the charity and trustees of CCCRF, is pleased that the two charities are merging to create a strong market leader in brain tumour research. “We are honoured to be working with Karen and the Christopher Clarke Cancer Research Fund.  Karen, her family and friends have raised an incredible amount of money – over £320,000 to date, inspired by her son Christopher whom they sadly lost.  Brain tumours are the biggest cancer killer of children, more than leukaemia, yet woefully underfunded in comparison.  Together we can change this.”

Neil Dickson, Founder and Chair of SDBTT welcomes the merger. “We are only too aware of how losing a child to a brain tumour can turn your life upside down and the need to then do something so that other families don’t have to go through this.  So we know that together we can raise more to invest into research to find a cure for this devastating disease and save children’s lives in the future.We are pleased that CCCRF have chosen to put their trust in us, working with us to invest more into brain tumour research.”

An education module has been launched today for medical professionals in a bid to reduce the time it takes to diagnose brain tumours in children and young people from the current average of 12-13 weeks to 5.

Samantha Dickson Brain Tumour Trust collaborated on the HeadSmart campaign, launched last year, to assist parents and health professionals in recognising the early signs of brain tumours in children and young people. HeadSmart is asking GPs, paediatricians and doctors of emergency medicine to use the brand new e-learning tool on the HeadSmart website to help them recognise more accurately and swiftly, the symptoms of a brain tumour in children. With symptoms often mimicking those of other diseases and illnesses, a brain tumour may be less easily identifiable than other conditions. A quicker diagnosis may have a significant influence on survival rates and can reduce the long term effects of a brain tumour, e.g. blindness, deafness or other disabilities.

The online module is the latest addition to the HeadSmart campaign that was launched last year and aims to improve diagnosis times for children with brain tumours in the UK as these lag behind those in other countries. The HeadSmart partner organisations (Samantha Dickson Brain Tumour Trust, the Royal College of Paediatrics and Child Health, the Children’s Brain Tumour Research Centre at the University of Nottingham and The Health Foundation) have produced the module to assist medical professionals in understanding the early signs of brain tumours in children and young people.

Professor David Walker, Professor of Paediatric Neuro-oncology at Nottingham University, commented: “Symptoms of childhood brain tumours are often similar to those of other diseases and illnesses, and we want to help doctors at the front line of the health system to be more confident about when a child needs a brain scan and when they do not. This online education module, and the HeadSmart website as a whole, aims to raise awareness of the symptoms and guide doctors about what to do if they see a child presenting with them.”

Julia Trusler, Head of Research and Policy at SDBTT said “We are delighted to see this e-learning module launched for health professionals, which will enable GPs and paediatricians to have greater knowledge about the signs and symptoms of brain tumours in children, and when a child should be referred for a scan. We have been working hard on it for some time, with our HeadSmart colleagues, and are particularly grateful to all the health professionals who have provided feedback and input. We are now keen for this to be used as widely as possible, and encourage everyone to send a link to GPs or paediatricians that they know to get the word out there.”

The education module is based on a clinical guideline that is endorsed by the Royal College of Paediatrics and Child Health and accredited by NHS Evidence. It provides advice on the recognition and investigation of children who could have a brain tumour to help doctors to make judgements about those children who require a referral for a scan, those who should be reviewed again later and those who should be reassured. It also gives information about the functions of different areas of the brain and what this might mean in terms of the symptoms that result. Recently the HeadSmart campaign was shortlisted for the BMJ’s Improving Healthcare Award for Excellence in Healthcare Education. This recognises the work HeadSmart has already done to raise critical awareness of this issue.

You magazine has a readership of over 5 million, which means that Sacha’s story has been shared with a  great deal of people, helping to raise crucial awareness for brain tumours.

You can read Sacha’s full story here

If you have a similar story to Sacha’s, why not share it with your local media? Take a look at our media guide to find out some hints and tips on how to approach your local media.

The Information Standard is a certification scheme for health and social care information. It is an independent scheme supported by the Department of Health. Any organisation that produces health and social care information can apply to join the scheme. If an organisation successfully meets the quality criteria of the standard and becomes certified, it can place the quality mark on its materials. The quality mark is a quick and easy way for the public to identify reliable and trustworthy sources of information. The scheme’s certified members are a mix of national charities, NHS organisations, voluntary, statutory and commercial organisations. The scheme is growing as organisations are in the process of gaining certification.

According to a survey carried out by The Information Standard[1], the majority of the general public (72%) believe that they would be better able to manage their own and their family’s health if they had quick and easy access to health information they could trust. The Information Standard, which is supported by the Department of Health, was launched to provide this kind of assurance.

Angela Coulter PhD, Hon FFPH, Hon FRCGP, an independent healthcare analyst who advises on the scheme, commented: “Organisations that become certified members of the scheme, and therefore display The Information Standard quality mark on their health information or social care materials, have proven that they adhere to the very highest standards of information production. The public can feel confident that if they see The Information Standard quality mark on health and social care websites or leaflets then the information can be trusted and relied upon.”

Sarah Lindsell, CEO, said of its certification: “We are proud to have been recognised as providers of quality information and to have become a member of The Information Standard scheme.  With a wealth of experience supporting people affected by a brain tumour over the last 15 years, we understand the need for clear, accurate, impartial, appropriately researched, accessible and up to date information.  When someone is diagnosed with a brain tumour the individuals and their families are devastated and often have a desperate need to know more.  In our experience, information helps people and empowers them.  Samantha Dickson Brain Tumour Trust continues to develop and grow and this accreditation is a fitting tribute to the dedication of the charity to be the very best in our field.”

For further information please go to www.theinformationstandard.org

The SDBTT offices were absolutely elated when we heard the fantastic news that Sharon Sambrook, whose son Ben was diagnosed with a brain tumour aged seven, won the Tesco Charitable Mum of the Year Award 2012.

Sharon was determined to make a change to the treatment of brain tumours and set about establishing an SDBTT Umbrella Group on behalf of Ben. To date Sharon and her family have raised £90,000, an amazing sum which has been channelled into funding world class research projects and supporting families like Sharon’s who have been affected by a brain tumour.

The Tesco judges recognised Sharon’s amazing commitment to raising funds and awarded her this prestigious award.

Whilst most of us would probably have taken a bit of time to relax and perhaps put our feet up for a bit, Sharon was already out and about schmoozing the likes of David Cameron at No.10. Sharon alerted Mr Cameron to the shocking fact that brain tumours are the leading cause of death for children to cancer and that less than 1% of the UK’s funding goes to researching them further.

We are so pleased to have such a wonderful supporter in Sharon and couldn’t be happier that her determination and hard work was recognised by Tesco.

Take a look at what Tesco has to say about Sharon and her wonderful award