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Proton beam therapy centres announced for UK

Samantha Dickson Brain Tumour Trust welcomes the Department of Health’s announcement of two proton beam therapy centres in England, meaning patients will no longer need to go abroad for treatment.

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/

SDBTT joins forces with the Christopher Clarke Cancer Research Fund

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.”

Brain tumour e-learning module launched for health professionals

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.

Sharing your story can make all the difference

Sacha Langton-Gilks, whose son David, was diagnosed with a medulloblastoma brain tumour, has recently spoken to You magazine about her experience of caring for a seriously ill child and how important it has been for her to form a support network.

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.

SDBTT gains The Information Standard accreditation

We are delighted to announce we have been certified as a provider of high quality health and social care information by The Information Standard scheme,  joining a select group of the very best charities in the UK.  We will now be using The Information Standard logo on our fact sheets and website information.

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


[1] Results taken from a survey, conducted on behalf of The Information Standard scheme of 2,100 people in England in November 2010.