Brain Tumour Action (BTA) was granted charitable status in May 1993.  BTA arose out of a need from patients and carers attending the Western General Hospital in Edinburgh to have someone to talk to, to know that they were not alone and to realise that there were other people going through the same problems and experiences as themselves.

BTA have no employees, all our work is carried out by committed volunteers.

Aims

BTA is a voluntary organisation with five major aims:-

• Support for relatives and sufferers of brain tumours
• Counselling for those who wish it
• Information on brain tumours and their treatment
• Education of the public about tumours
• Research into brain tumours and their treatment

Support Groups

Several support groups are now operating. In Scotland, these are at the Western General Hospital in Edinburgh, one at the CLAN Centre in Aberdeen and another one in The Borders. There are also others in Middlesbrough and Newcastle-upon-Tyne.

In addition to the above, we provide aromatherapy for patients; run a “pager contact service” – allowing the carer and patient to have some time apart from each other; host a discussion forum hosted by Yahoo, and publish a bi-annual newsletter. For more on these services see the projects page.

Counselling

The counselling side of the program is run on a telephone “befriender” basis.  The telephone is covered by a trained counsellor.  In addition, volunteer “befrienders” have undergone a 4 week training course in care and support.  All these volunteers have had a personal experience of brain tumours or are relatives of brain tumour sufferers.

Information

Information is provided through a series of eight leaflets - low and high grade tumours, radiation, chemotherapy, epilepsy, Meningioma, pituitary and ‘living with a brain tumour’; these leaflets and further information on brain tumour facts and figures can be downloaded free.

Education

Education about various aspects of brain tumours is provided by the BTA website, by BTA volunteers attending study days organised by neuro-oncology nurses around the country and by holding our own annual lecture and information day.

Research

Research - We have participated in the “Scottish Audit of the Royal College of Physicians Guidelines for Good Practice in the Management of Malignant Glioma”.  We are currently providing financial aid to assist a medical student to undertake a research project on “Post-resection prognostic outcomes of primary malignant paediatric brain tumours of different histopathological subtypes ”.

Brain Tumours and Children

Brain tumours are, unfortunately, the most common solid tumour in children.  BTA are currently in discussion with an NHS Trust and a major cancer nursing charity to establish a Specialist Paediatric Neuro-Oncology Nurse.

BTA have printed a new information leaflet for parents of children with brain tumours.  This is available by contacting Lynne Barty on 0131-466-3116. It is also available on our website - click here . BTA are now preparing a “short story” information leaflet for children. More information will be available soon.

We are also planning to set up support groups for children with brain tumours, their parents and other family members.

Why Brain Tumour Action is different

There is no other organisation in the UK quite like Brain Tumour Action; because there is no other organisation in the UK that provides the range of support and services that we offer brain tumour patients and their carers.