When Fiona Holmes approached Julie in 2012 with an interest in setting up a local support group, She was very well received! Together they had several meetings to discuss. Alison Barnes joined and supported Julie with all of the admin and sent out a questionnaire to all patients asking for their interest in a support group/ information day. There was a good response. It was decided to launch the group at an information event day held at The Bentley Hotel in Lincoln. Following the launch Joanna Hillier, Patient Rep., offered her help at which Julie was delighted and offered her the role as treasurer and so a committee was born!
The group is open to anyone diagnosed with a Primary Brain Tumour either benign or malignant and their partners and carers. Patients should be resident in Lincolnshire and/or treated at United Lincolnshire Hospital Trust (ULHT)
Our first meeting was held in November 2013, and subsequent meetings are held every three months, we invite guest speakers, enjoy refreshments and hold raffles. In addition to our meetings we enjoy trips out together to places of interest to our members-our aim is to have fun!!
We are always looking for new ways to raise funds and have already held a number of events. Monies raised / donated are to pay/subsidise travel costs to meetings, days out, lunches etc.; we do NOT want anyone NOT attending because they cannot drive at present and would like to.
Our first Newsletter was published in autumn 2014 and we plan to roll out 6 monthly. We are grateful to Macmillan whom gave us a grant and to the Brain Tumour Charity whom contribute to our refreshment’s.
Our Aims and Objectives
Confidentiality – To give support, information and advices where appropriate to patients and their families/carers and friends who have experiences of brain tumours.
To welcome everyone equally and take steps to make the group open and accessible.
To make sure everyone within the group understands and respects confidentiality.
To listen to each other
To provide accurate and practical information, but not to give medical advice or make inappropriate recommendations.