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Your condition and individual circumstances may differ to others, but here are some of the questions that people often ask us when they call the Helpline.

Our telephone, email and postal enquiry services are confidential between you and the Brain & Spine Foundation. Any information disclosed to the Helpline team will be treated in complete confidence.

• The Helpline team collect sensitive personal data about your health when you speak, email or write to them. They will use this information to answer questions and provide information and support. Any notes taken when they talk to you are shredded at the end of the call. Copies of emails and letters are securely stored for reference for 12 months. After this period they are permanently deleted or shredded.
• We also collect audit information such as age, gender, the condition you enquired about, and your location. This is to monitor and evaluate our services. Audit information is stored anonymously and securely. If it is shared with third parties, for example in reports about our work to funders, it is only done in aggregate, so that your individual data will never be identifiable.
• We don’t record your phone calls to the helpline but from time to time helpline staff may listen in to calls for training or support purposes. This would be explained to you at the start of your conversation, and if you would prefer the other person not to be present, please tell us.
• If you request a booklet or any other information, we will ask if you would like to stay in touch with us, so you receive other information about our work. If you agree, we will retain your contact details. If you don’t agree, these details will be destroyed after the information has been sent to you.
• Any personal information you provide via our helpline services or post on our social media channels will not be passed on to anyone else without your express permission except in exceptional circumstances in line with our safeguarding policy or to comply with the law.
• We would only need to say or do something if:
  • You directly ask us to pass on information about you to someone else
  • We believe your life or someone else’s life is in immediate danger
  • You tell us that you’re seriously harming another person
  • You identify someone who has or says they are going to harm to someone else
  • A terrorist threat is reported
  • We are required to do so by law
  • You compromise the delivery of our service or threaten the safety of our staff

For further information, please read our privacy policy [Link to privacy policy].

We don’t record your phone calls to the helpline but from time to time helpline staff may listen in to calls for training or support purposes. This would be explained to you at the start of your conversation, and if you would prefer the other person not to be present, please tell us.

The information provided by the Helpline team is not a substitute for professional care and should not be used for diagnosing or treating a health problem or disease. Our Helpline team will not give advice or opinions, either medical or personal.