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Peer Support for people affected by a brain tumour

Here at brainstrust we don’t underestimate the value to talking to someone who has had a similar experience.  Our community overwhelmingly report that a brain tumour diagnosis is frightening, isolating and bewildering.  Talking to someone who has already been through the same experience can help to reduce the isolation, help to make sense of what is happening, and reduce the fear of the unknown.

Who are peer supporters?

Peer supporters are trained volunteers who have been through a similar experience to you – whether you are the patient or caregiver. They will provide reassuring support by answering your questions about their own experience and can also:

  • Help you to prepare for your appointments – supporting you to work out what questions you need answered;
  • point you in the direction of useful resources;
  • help you weigh up different treatment options by asking questions to help identify what’s at stake; and
  • be there to listen at a time when it’s most needed.

How does it work?

If you would like a peer supporter to contact you, please fill in the application form (see below). You will be contacted by your local support specialist who will ask you some questions to help match you with the right volunteer. You will then receive an email, or a letter if you prefer, letting you know the name of your peer supporter. Once you have been given the name of your peer supporter they will contact you, either by phone or by email, at a mutually agreeable time and within a week.

How you proceed with the relationship will be decided between you and your peer supporter and will depend on your circumstances. The relationship could be long-lasting and involve calls, emails and meeting face-to-face (although we ask you not to meet in each other’s homes), or it could be a one-off conversation/email exchange. It will be up to you to determine what support you require and if your support need has been met.

Support specialists will keep an overview on the relationship, checking in with both you and your peer supporter to make sure everything is going as planned and that the relationship between you is working. We will also be monitoring if the relationship is of benefit to you.

Confidentiality

Peer supporters operate within our confidentiality statement.  This says that anything you discuss in the course of your relationship will be confidential to brainstrustThe exception to this will be if it is felt that someone is at risk of significant harm if information is not shared more widely.  All efforts will be made to obtain consent if sharing, and the decision to share will not be taken lightly.  The only other reason to share information will be in the unlikely event of a court order. If there is an immediate danger peer supporters are advised to call 999 to engage the emergency services.

We hope that you will find the peer supporter relationship very helpful to you.  If you find things are not working out as you expected, you are encouraged to ring your support specialist to let them know.  The support specialist will work with you both to find a plan for moving forward.





If you think you would like to be a peer supporter, please download our application form and once completed post it to brainstrust HQ, 4 Yvery Court, Castle Road, Cowes, Isle of Wight, PO31 7QG or scan and email it to brainstrust HQ.

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