The Brain Tumour Support Group

February 20th, 2019 Posted in Blog, Volunteer Stories

Tessa Murphy is a Brain Tumour Support Worker for Brain Tumour Support. She runs a monthly group at Rowans Living Well Centre with the support of Jill Mansfield, a volunteer at Rowans Hospice. In this blog, she talks about how the group works.

“Brain Tumour Support aims to support anyone affected by a brain tumour, including the patient, their family and friends.

At our monthly session in Rowans Living Well Centre, we have welcomed both patients and their carers, with some returning each month and new people joining. On average, we have between six and twelve people at the group. Support can continue for as long as people feel that they need it, and therefore we also welcome the bereaved to our group sessions.

Our aim is to provide a safe and friendly environment where people can meet others who are experiencing or have experienced a similar journey. Though everyone’s story is different, members say that they get support from knowing that others understand what they are going through. This is important as, for many, their illness is not obvious, and so can be misunderstood.

Often, a friendly environment, a drink and piece of cake and the opportunity to talk is all that is required. At other times, we have more formal sessions with invited speakers. These speakers have included Citizens Advice Bureau, Macmillan Advice Service and a Carer Support Worker who was able to provide information about support specifically available for parents. One of the Rowans Hospice Social Workers has also visited the group to tell us about accessing services and both patients and carers right to an assessment of their needs.

A Clinical Nurse Specialist has been able to attend some of our sessions, when workload allows, and this has been very useful for the group as she can provide a medical perspective to questions and lead discussion.

One of the highlights from last year was a guest speaker from the Penny Brohn Charity, based in Bristol. The speaker spoke about their free courses which focus on helping people to live with the impact of cancer and non-clinical approaches to serious illness. The group found the information really useful and were particularly interested in the possibility of non-fee paying residential visits.

Support doesn’t end when the group finishes. Jill and I facilitate the meetings, and then I am available to provide support outside of the sessions. I follow up with each newcomer to the meeting to discuss how Brain Tumour Support can work with them to support their needs. If one of our regulars doesn’t attend, I will follow up with them to make sure that they are receiving the support that they need outside of our monthly group.

As the group is based at Rowans Living Well Centre, our members are also able to access the services provided here, including complementary therapy sessions and carer support groups.

If you, or anyone you know is affected by a brain tumour, I would encourage you to come along to one of our sessions or contact Brain Tumour Support on 01454 422701 or visit our website www.braintumoursupport.co.uk

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