Re-assuring information on swine flu
Brain Tumour UK has produced support information on swine flu and other flu-like illnesses, for anyone affected by a brain tumour.
Produced with expert information from leading clinicians, the information is designed for adults, with an additional briefing for the parents of children with a brain tumour.
Swine flu information for adults with brain tumours
Swine flu information for parents of children with brain tumours
We have produced a range of information sheets which are available to download. Click on the title below to open the document.
- Living with a brain tumour
- Epilepsy and brain tumours
- Radiotherapy and brain tumours
- High-grade glioma brain tumours and treatment options
- Low-grade glioma brain tumours, astrocytoma and oligodendroglioma
- Chemotherapy for brain tumours
- Pituitary tumours
- Meningioma
- Holiday insurance
- Questions to ask your medical team
Click here to request any of these in hard copy
Other Information
Temodal (temozolomide) and Gliadel Wafers (carmustine implants) are available on the NHS to patients with a high-grade glioma so ask your GP and/or consultant if they are the right treatments for you.
You will almost certainly be eligible for Temodal which can be administered with and after radiotherapy. Gliadel Wafers contain an anti-cancer drug and are inserted in the brain during surgery.NICE has recommended Gliadel Wafers for the treatment of newly-diagnosed high-grade gliomas where 90% or more of the tumour is surgically removed.
Copies of Carmustine implants and temozolomide for the treatment of newly diagnosed high-grade glioma are available to download or order printed copies of the leaflet from the NHS Response Line 0870 1555 455, quoting reference N1268.
Support services information
Macmillan Cancer Support and Cancerbackup each provide invaluable information about cancer support services. Visit them on www.macmillan.org.uk and www.cancerbackup.org.uk
Cancerbackup has recently launched the first nationally available audio tapes series for people affected by cancer. The tapes are free of charge to anyone affected by cancer, their families, carers and friends.
One of the first titles to have been produced is an audio version of 'Understanding Brain Tumours'. The series also includes a range of titles which can offer support for other aspects of cancer, such as managing fatigue or pain and coping with the emotional and physical effects of cancer.
A full list of audio titles and details on how to order is available from their website or by calling Cancerbackup on 020 7696 9003.
Neurological services information
Getting the Best from Neurological Services:A Guide for people affected by conditions of the brain, spine and nervous system
This is an excellent guide produced by the Neurological Alliance to help you navigate your way through your treatment and care and get the help you need. Available to download from their website at www.neural.org.uk or by emailing info@neural.org.uk.
Financial benefits information: A better deal
More than £126.5 million in disability benefits is going unclaimed by people diagnosed with terminal cancer in the UK according to a report by Macmillan Cancer Support.
Macmillan's findings relate to unclaimed Disability Living Allowance (DLA) and Attendance Allowance (AA) by people diagnosed with terminal cancer. Terminally-ill cancer patients automatically qualify for DLA and AA, yet millions may be going unclaimed by people who do not have a terminal diagnosis but find claiming benefits more stressful than having cancer itself! They may also be entitled to other benefits such as housing benefit, council tax benefit, income support or Carer's Allowance.
Macmillan has information available to download from their website at www.macmillan.org.uk/abetterdeal or call Macmillan free on: 0800 500 800.
Support for children
"I think Headstrong is fantastic and I only wish it had been available when my daughter was diagnosed."
Mother of a child with a brain tumour
Headstrong - all about brain tumours is a colourful child-centred resource produced by the Brain and Spine Foundation, who provide information and support for children and adults with neurological conditions.
Headstrong aims to help children find out more about their condition, cope with their treatment and lessen their anxiety. The Foundation worked with an advisory panel of expert individuals and organisations including Great Ormond Street Hospital , paediatric oncologists, play specialists, medical writers, children's writers and graphic designers. Importantly, they also involved a reference group of children (all of whom had experience of living with a brain tumour) who were responsible for influencing the content and presentation.
There are two booklets, one for children aged 7-9, the other for those aged 10-12. There is also a CD-Rom and a website with interactive games and message board: www.headstrongkids.org.uk
To find out more about Headstrong and to order copies of the resources, see www.brainandspine.org.uk/information/headstrong/ or email headstrong@brainandspine.org.uk
Other questions raised have been added to our Frequently Asked Questions page.
