Support for all
Telephone Helplines
Some of the UK brain tumour charities have helplines you can call for information and support related to all aspects of dealing with a brain tumour.Below are details of helplines which are either run by people with personal experience of a low-grade brain tumour, or which offer specialist support services.
Brainstrust - Aged 19, Meg was diagnosed with a low-grade brain tumour, just as she was begining life at university in 2004. Meg's tumour was successfully resected in Boston, USA in 2007. Meg's Mother, Helen Bulbeck, founded the charity brainstrust and is dedicated to improving clinical care for brain tumour sufferers and providing co-ordinated support in their search for treatment - worldwide.
For more information about the work of brainstrust visit www.brainstrust.org.uk or call 01983 292405.
Brain Tumour Action runs a Phone Helpline which has been in continuous operation 24 hours a day for over six years. The telephone is covered by a trained counsellor, Lynne Barty, whose son was diagnosed with a low-grade glioma as a child and is now married and in his mid-20s. Specialist neuro-oncology nurses can also give advice if requested.
Telephone: 0131 466 3116
Brain Tumour UK - Phone Pals
What is Phone Pals?
Members of each Phone Pals group are given a date and time when their phones will ring and they will be linked into the conversation. They can then talk to each other as though they were in the same room. Call time will last for approximately one hour and is completely free of charge. Each group will have a host. Initially, this will be a member of Brain Tumour UK. Phone Pals has been running since March 2005.
No Cost
Brain Tumour UK is able to fund the cost of the service and the telephone charges and there are no cost implications for the people involved.
Who is it for?
There are currently four Phone Pals groups with several people in each group, all members are low grade brain tumour patients. The hope is that people will be able to offer support to each other, share experiences, make new friends and improve their quality of life. Each group talks about what is relevant to that group at that time. It can be about brain tumours, treatments, coping with everyday life or where they hope to go on holiday. The host facilitates what is talked about and tries to encourage everyone to join in.
If you are interested in finding out more about Phone Pals, or in taking part, please call 0845 4500 386 or email: info@braintumouruk.org.uk
Brain Tumour UK - Helpline
Staff and volunteers help with questions on living with a brain tumour, the various treatments the patient may be going through, where to go for support, sources of further information or just to talk about the diagnosis and what lies ahead. The service is available to anyone who has been touched in some way by a brain tumour.
Ring their Helpline on 0845 4500 386 (10am - 1pm, Monday to Friday)
Hammer Out - Anne Coles is the Patient and Family Support Co-ordinator for the charity and has been in the role a little over two years. She has personal experience of low grade tumours as her husband was diagnosed with a grade 2 astrocytoma in December 1998 and he died in December 2005. They went through biopsy, radiotherapy, chemotherapy, and all the associated behaviour patterns and the problems that brings, as well as all the emotional, physical and psychological living day to day with a brain tumour.
Hammer Out also has two counsellors who they fund to put in extra support for the charity, one of whom is a registered Marie Curie Nurse and has vast experience of working with brain tumour patients. They attend the local support group in Bristol, the Hammer Out Family Day and also run workshops at the charity’s annual conference. Hammer Out are hoping that the counsellors will also attend other support groups run by the charity in the future.
Telephone: 0845 450 1039
Meningioma UK was set up by 2 meningioma patients, and continues to be run by patients for patients. The founder, Ella Pybus, offers one-to-one telephone support and also runs Meningioma Phone Friends. The "Phone Friends" scheme offers small group telecon calls or one-to-one with another patient or carer. If you have a young family then Meningioma Mums is the group you're looking for (dads welcome too). Ella also moderates a support forum called "Talking Heads" via the Meningioma UK website. www.meningiomauk.org
Helpline: 01787 374 084