New report on brain tumour patients facing hardship and isolation

Neurosurgeons back call for better understanding and support

THOUSANDS of brain tumour patients in the UK are struggling to cope financially and emotionally in the face of ignorance about the disease, says a report.

Losing Myself; the reality of life with a brain tumour, says many people living with a brain tumour are robbed of their sense of identity, their independence, their ability to work and their relationships.

Four out of ten have had to give up work entirely and half experience financial difficulties following their diagnosis.

Three quarters feel awkward in social situations, with some saying they fear being labelled ‘drunk’ or ‘stupid’ because their balance or speech is impaired.

The report, based on the responses of more than 1,000 brain tumour patients, is the most comprehensive study of its kind undertaken anywhere in the world.

An estimated 55,000 people are living with a brain tumour in the UK, with 25 new cases diagnosed every day.

Losing Myself , produced by The Brain Tumour Charity, says:

One in three is severely isolated
One in three exhibits personality changes – compared by one respondent to a ‘Jekyll and Hyde’ experience
Nine out of ten have emotional or mental health problems
Two out of three have relationship problems, with three quarters reporting reduced physical intimacy
One in three has visual problems
A quarter experience seizures
Nine out of ten have become more reliant on others

Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “A brain tumour is the only type of tumour that can directly affect your personality, your behaviour and your ability to communicate – all of the things that make you the person you are.

“Our report clearly shows the devastating impact of brain tumours, the need for greater awareness and understanding of the disease and the importance of research to develop more effective treatments.”

Lewis Thorne, consultant neurosurgeon at the National Hospital for Neurology and Neurosurgery in London, said: “This report from The Brain Tumour Charity highlights so many of the problems experienced by the brain tumour patients I see in my clinic but which are often not discussed during medical consultations.

“People living with a brain tumour can lose their autonomy and their independence.

“They can have significant problems finding work and may face prejudice if they have had to take time out of employment because of the disease.

“And personality changes caused by the tumour and treatment may lead to problems with relationships and physical intimacy.”

Caroline Hayhurst, consultant neurosurgeon at University Hospital Wales, said: “The brain makes us who we are and gives us all of our sensations of the world around us.

“As clinicians we often focus on treatment and survival but we need to ensure that adequate support is available to patients and their families to help deal with these wider aspects of the impact of a brain tumour.

“This report from The Brain Tumour Charity gives us a sense of the intense frustration of losing functions such as sight, speech, memory and independence.”

Among those whose experiences feature in Losing Myself: the reality of life with a brain tumour are:

Tasmin, 38, a midwife and single mother of three children from Cheshire. Tasmin had surgery to remove a brain tumour in 2013. Her contract allowed her only two months off on full pay and two months on half pay so she opted for a phased return to work just three months after her operation. She suffered from extreme fatigue even after three-hour stints on simple duties and her health deteriorated badly. Tasmin ended up in severe financial difficulties and sought help from a debt management charity

Karl, 36, from Barnsley. A former regional manager, Karl is unable to work following his diagnosis with a brain tumour in 2009. He experiences chronic fatigue and seizures. Karl’s seven-year-old daughter has been taught how to call for an ambulance and to explain to paramedics that her dad has a brain tumour. His three-year-old son once comforted him during a seizure while paramedics were stabilising him. Karl says: “It’s like the roles have reversed.”

Michael, 47, a church deacon who lives in Glasgow with his wife and two teenage daughters. Michael has struggled with epilepsy since having surgery for his tumour and lives daily with the anxiety that he might experience a seizure.

Sunil, 45, a maths teacher from Blackpool. Married with two children, Sunil has problems with his balance. Before his brain tumour was diagnosed, he held a post as assistant head teacher.

Gary, 45, from Glasgow. Married with two children, Gary felt intensely isolated and suffered feelings of depression and anxiety after surgery to remove a brain tumour. He compares the experience to a funeral; people were supportive during the event but drifted way afterwards.

Keith, 51, from Liverpool. Keith has been unable to work since he was diagnosed with a brain tumour in 2013. Before his surgery, he had a bar job and was out seven nights a week. “I’d be out seven nights a week and I was the life and soul of the party. Now [my partner] Alison is lucky to get me to go out for a meal with her; I go to my mum’s house and to Alison’s house, and that’s it.”

Find out more at: www.thebraintumourcharity.org