Shining a Light on – The Brain Tumour Charity

Jasmin Patel, Optical Engagement Manager, The Brain Tumour Charity

8th November 2018

The Brain Tumour Charity is the world’s leading brain tumour charity. Committed to saving and improving lives, we provide essential funding to world-class researchers, campaign for urgently needed policy change and provide a range of free specialised support services to meet the needs of everyone affected by a brain tumour.

Every day 31 people in the UK are diagnosed with a brain, other CNS or intracranial tumour. We’re dedicated to improving life for each and every one. That’s why the charity provides a variety of services online, over the phone and face to face so that we can support as many people as possible. These resources include but are not limited to:

  • Online resources – We provide information on both adult and paediatric brain tumours covering a range of topics, including understanding, treating and living with brain tumours, as well as others items such as employment resources. Information packs are available directly on the website, or from healthcare professionals.
  • Facebook support groups – Closed, moderated Facebook support groups for people living with a brain tumour, parents and carers offering 24/7 peer support.
  • Information and support – We offer a dedicated telephone support line, email and online chat service – live chat – where we offer both emotional support and further information on 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.
  • Online Information Days – Online Information Days provide people with the opportunity to hear talks from experts in their field. This increases their knowledge and understanding of brain tumours and their impact.
  • Dedicated services – This includes a Children and Families Service which offers support for families, animations that explore and explain a variety of subjects relating to brain tumour patients and the brainy bag (treats for children and useful resources for their families and carers). We also provide a specialised Young Adults Service for those aged 16-30 years. This enables us to offer age-appropriate support and information for young adults, and helps us to connect them with others who are going through similar experiences.
  • Family Days – Our Family Days give families affected by a brain tumour the chance to enjoy a day out and spend time together away from hospital. It gives them the opportunity to meet others experiencing similar difficulties and do something fun as a family, without having to worry about finances.

The Brain Tumour Charity’s healthcare engagement team is made up of four healthcare professionals. Committed to supporting all healthcare professionals who work with patients with a brain tumour, the team help to provide resources, training, newsletters, regional study days and an annual conference. We can meet with you to help with any queries and show you samples of our resources, at a time and place convenient to you in your working day. We have funded our first CNS 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.

The charity is also working towards a new way to learn from each other’s experiences called BRIAN (the Brain tumouR Information and Analysis Network). BRIAN is a global databank where we’ll securely and anonymously store data about people’s tumour types, treatments, experiences, side-effects, decisions and more, enabling us to gain insights into all different types of brain tumour and helping us to reach a cure quicker.

For more information about the services or resources we can provide visit thebraintumourcharity.org or email HCPEngagement@thebraintumourcharity.org