The HeadSmart team is made up of people with a shared desire and determination to improve earlier diagnosis of brain tumours in children and young people.
The consultant leaders of the project are acknowledged leaders in their field, experts in the clinical factors affecting diagnostic processes in brain tumours, and experienced clinicians intimately aware of NHS managerial values and attitudes.
The Brain Tumour Charity
The Brain Tumour Charity (formerly Samantha Dickson Brain Tumour Trust) is the UK's largest brain tumour charity. It funds research, provides support and information for people affected by brain tumours and campaigns for improvements in services and care relating to brain tumours.
The charity currently spends around £1million per year on researchand has funded several major breakthroughs in the understanding, diagnosis and treatment of brain tumours. Its support and information service assists hundreds of affected individuals each year through its helpline, information roadshows and family days.
The Brain Tumour Charity has had long-standing concerns about the time taken to diagnose childhood brain tumours in the UK, having identified that diagnostic delays were a frequent source of parental concern. It funded the initial work at CBTRC to produce the guideline and undertake the research that has led to this campaign, and continues to contribute financially to the project. The founders of this charity, Neil and Angela Dickson, have experience as parents of losing a child to a brain tumour, where delay in diagnosis was a factor, and have actively supported the campaign.
Royal College of Paediatrics and Child Health - RCPCH
The Royal College of Paediatrics and Child Health is a charity established by Royal Charter, responsible for the training and continuing education of paediatricians in the UK. The RCPCH has over 12,000 members both in the UK and overseas.
RCPCH undertakes research and policy generation with the goal of providing a strong voice for children, young people, and the health services they need.
The RCPCH has played a pivotal role in the HeadSmart project by publishing the guidance document '"Guidance for Services for Children and Young People with Brain and Spinal Tumours". In 2008, it endorsed the 'Diagnosis of Brain Tumours in Children guideline' produced by CBTRC, upon which the HeadSmart campaign is based. The RCPCH manages the programme and will help to disseminate the 'Diagnosis of Brain Tumours in Children' guideline to healthcare professionals.
Children’s Brain Tumour Research Centre - CBTRC
The Children's Brain Tumour Research Centre at the University of Nottingham was initiated as a result of expression of public and professional concern that there was a gap in research and clinical development for children with brain tumours.
The centre, developed by both public donations of £2.5m and external peer reviewed grants valued at £5.7m raised between 1997 and 2010, provides a focus point for researchers from many different areas of science and medicine and enables them to work together to improve the outcomes for children and young people with brain and spinal tumours.
The CBTRC's launch in 1997 coincided with the Royal College of Paediatrics and Child Health publication of "Guidance for Services for Children and Young People with Brain and Spinal Tumours". Since then, the CBTRC collaborators have contributed to the development of an extensive portfolio of clinical trials and national research, as well as the organisation of international meetings and political lobbying through the All Party Parliamentary Group on Brain and Spinal Tumours.
The CBTRC produced the 'Diagnosis of Brain Tumours in Children' guideline and undertook research into the time taken for children and young people to be diagnosed with a brain tumours, which demonstrated that half of children take over three months to be diagnosed. It is this guideline and research that the HeadSmart campaign is based upon.
The Health Foundation
The Health Foundation is an independent charity working to continuously improve the quality of healthcare in the UK.
It wants the UK to have a healthcare system of the highest possible quality – safe, effective, person-centred, timely, efficient and equitable, and it believes that in order to achieve this, health services need to continually improve the way they work.
The HeadSmart project received funding through the 'Closing the Gap' award scheme from September 2009 to March 2012, alongside other funding from The Brain Tumour Charity. The Health Foundation provided ongoing support to the project throughout the duration of the award. We would like to thank the Health Foundation for its generous financial support which has allowed the HeadSmart campaign to become a reality.