The Importance of Early Diagnosis and Healthcare Engagement
2 November 2018 | The Brain Tumour Charity
Every day 31 people in the UK are diagnosed with a brain, other central nervous system or intracranial tumour. Brain and intracranial tumours are the biggest cancer killer of children. The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families.
We fund pioneering research to increase survival, raise awareness of the symptoms and effects of brain tumours and provide free support for everyone affected to improve quality of life.
BRIAN (the Brain tumouR Information and Analysis Network) is a new way for those affected by a brain tumour to learn from each other’s experiences and about different parts of the journey. BRIAN is a databank where we will securely and anonymously store data about people’s treatment, tumour types, experiences, side-effects, decisions and more, and then gain insights into all different types of brain tumour and help us reach a cure quicker.
Our multi-award-winning, UK-wide campaign, HeadSmart, is based on research funded by The Brain Tumour Charity at The University of Nottingham (2003-2006). The research investigated the reasons behind delayed diagnosis and identified common signs and symptoms by age groups.
HeadSmart aims to educate the public and healthcare professionals about the signs and symptoms of brain tumours in children and young people, to reduce diagnosis times. This will save lives and reduce long-term disabilities. The on and offline resources provided by the HeadSmart campaign support healthcare professionals, giving them the tools and information they need to know when to reassure, when to review and when to refer for a scan.
The primary public-facing tool is a simply credit-card sized ‘Symptoms Card’, of which over 2 million have been distributed across the UK to date. We encourage all healthcare professionals to revisit the signs and symptoms of brain tumours summarised by this guideline and to display the symptoms cards to aid earlier recognition of the symptoms.
Our Healthcare team is made up of four healthcare professionals – two RGNs, one Radiographer and one Optometrist. We are here to support all the healthcare professionals who work with patients with a brain tumour providing resources, training, newsletters, regional study days and our annual conference. We come to see you to help with any queries and show you samples of our resources, at a time and place which is convenient for you in your working day.
Just 53% of people with a low-grade tumour have access to a Cancer Nurse Specialist compared with 75% of people with a high-grade brain tumour. As a result, we have funded our first Cancer Nurse Specialist post in King’s College Hospital for patients suffering with a low grade glioma and we are looking for opportunities, UK wide, to do this again. Alongside this we are monitoring the developments of NHS England to ensure that Cancer Nurse Specialists are properly resourced and able to attend to the needs of people diagnosed with a brain tumour.
The charity provides a variety of services and resources, including but not limited to:
- Information resources
These are available for both adult and paediatric brain tumours, including downloadable fact sheets, animations and videos, with Information Standard accreditation.
- Printed resources
This includes Information packs available directly on the website, via clinical nurse specialists or other healthcare professionals. These give people the information they need at the point of diagnosis and throughout their journey, and signposting them to other ways to get the support they need. They can be ordered here.
- Facebook support groups
Closed, moderated Facebook Support Groups for people living with a brain tumour, parents and carers, essential peer support, moderated and guided by our experienced and compassionate team.
- Support and Information Line
This service is available for people to contact directly and access support through phone, email, our website, live chat and Facebook. This can range from emotional support to detailed enquiries about treatment options and tumour types.
- Financial and welfare benefits clinic
We have partnered with Rushmoor Citizens Advice to provide a weekly benefits clinic offering specialist benefits advice and assistance to people affected by brain tumours. Contact the Central team 0808 800 0004 for an appointment or more details. This is currently available on a Tuesday.
- Information Days
Information Days provide people the chance to hear talks from experts in their field. This increases their knowledge and understanding of brain tumours and their impact. It also provides a forum in which those affected can support one another, and seek support from the charity.
- Research and clinical trials
We provide essential information about clinical trials and research and a Research Involvement Network, ensuring people affected by a brain tumour can contribute to research and be part of the cure.
- A dedicated Children and Families Service
This is the only one of its kind in the UK and includes one to one support for families, animations that explore and explain a variety of subjects relating to brain tumour patients and the brainy bag, available to all children diagnosed with a brain tumour. This provides a treat for children diagnosed but is also a useful resource for families, carers and healthcare professionals to help address some difficult emotions a child may be feeling.
- Teenage and Young Adult Service
This is for young adults aged 16-30 years old with a brain tumour diagnosis. This helps them feel better supported and less isolated by providing age-appropriate support and information and helping them connect with others who are going through similar experiences.
- Family Days
Our Family Days take place across the UK and give families affected by a brain tumour the chance to spend time together away from hospital and enjoy a day out without having to worry about finances. It gives families the opportunity to meet others experiencing similar difficulties and share their stories.