Women wait longer for brain tumour diagnosis, report finds

Charity urges probe into ‘worrying’ differences

WOMEN with brain tumour symptoms are likely to wait longer for a diagnosis than men, a new report has found.

The report from The Brain Tumour Charity says that overall, almost one in three brain tumour patients (31.3%) visited a doctor more than five times before the disease was diagnosed and nearly a quarter (24.2%) waited more than a year for a diagnosis.

However, women were more than twice as likely as men to wait over a year for a diagnosis after first seeking medical advice for their symptoms.

They were also more likely than men to see a doctor at least five times before their diagnosis.

The report, Finding Myself in Your Hands: The Reality of Brain Tumour Treatment and Care, found that:

-          Almost one in three women (30.2%) went undiagnosed for more than a year after first consulting a doctor about their symptoms, compared with 15.2% of men;

-          More than one in three women (36.5%) saw a doctor more than five times before their brain tumour was diagnosed, compared with almost a quarter of men (23.4%);

-          One in ten women (10.5%) reported a lapse of at least five years between the appearance of their first symptoms and their diagnosis, compared with almost one in 20 men (5.8%).

There was also a link between household income and average time to diagnosis.

Among all brain tumour patients, those with a household income of less than £20,000 were more likely than those earning over £40,000 to see a doctor more than five times and to wait for over a year between their first visit and their diagnosis.

The report is the most comprehensive of its kind, based on a survey of more than a thousand people diagnosed with a brain tumour.

Respondents included people with low-grade tumours (sometimes referred to as benign) as well as those with high-grade (malignant) tumours.

Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “Our report shows that overall, people with brain tumour symptoms often struggle to secure a diagnosis and we will continue our drive to address that problem.

“However, it appears that women tend to face a more difficult path than men when they seek help for brain tumour symptoms.

“It is a worrying disparity and one that deserves further investigation.”

Carol Rutherford, 59, saw her own doctor and another GP at least five times as well as visiting an optician before she was diagnosed with a brain tumour in the summer of 2012. Her symptoms included memory loss, extreme tiredness and personality changes.

At one point a nurse friend suggested to Carol that she was showing signs of raised pressure inside her skull but her GP was adamant that she did not need a brain scan.

Carol, from Flitwick in Bedfordshire, said: “Even at that last appointment she said: ‘No, you don’t need a brain scan, you’re just really tired.”

Two weeks later, Carol collapsed and was diagnosed with a brain tumour the size of a man’s fist.

She was admitted to her local hospital, where doctors told her family to say goodbye as she would die within hours.

However, she was transferred that night to Addenbrookes in Cambridgeshire, where surgeons were able to remove the tumour.

“I am very, very lucky to have made a full recovery,” she said.

Finding Myself in Your Hands calls on policymakers across the UK to collect data on the experiences of people with all types of brain tumour.

The report found that 53% of patients were satisfied at the way their diagnosis was handled while 29% felt it had been dealt with unsatisfactorily.

Joanne Brown from Warrington, 47, was told initially that she had ‘inflammation of the brain’. Her GP referred her for a non-urgent consultation with a neurologist but she had to battle for an appointment and eventually saw a different specialist.

“When we finally saw the second neurosurgeon, he put up my scans on the wall and said: ‘Do you see that white bit at the top? That’s your tumour’.

“I said: ‘That’s my what?’ He assumed I’d already been told I had a brain tumour…He was absolutely gutted, as was I.”

Last year, the television presenter Sue Perkins described her devastation at the way her own brain tumour diagnosis was handled. Her NHS consultant suggested that infertility caused by the tumour would matter less to her because she was in a relationship with another woman.

Sarah Lindsell said: “Our findings show that more can be done to ensure brain tumour patients are treated with sensitivity and compassion at every stage.

“Even within the constraints facing the NHS, it should be possible for healthcare professionals and policymakers to build on existing good practice and improve the services offered to those diagnosed with this devastating disease.”

Finding Myself in Your Hands: The Reality of Brain Tumour Treatment and Care makes ten recommendations in total to NHS England, the Scottish Government, the Welsh Government and the Department of Health, Social Services and Public Safety in Northern Ireland.

They include:

-          Development of a campaign to improve awareness of brain tumour symptoms;

-          Ongoing updates of the referral guidelines for suspected brain tumours;

-          A review of the difference in waiting times for diagnostic test results across the UK;

-          A review of the number of nurses specialising in care of brain tumour patients.

The report is the sister publication to last year’s Losing Myself: The Reality of Life with a Brain Tumour, which presented the findings of research into the daily life of those living with a brain tumour.

Polly Newton, PR and Media Manager, The Brain Tumour Charity.

DD: 01252 418191 | M: 07990 828385 | polly.newton@thebraintumourcharity.org

About The Brain Tumour Charity
Registered Charity No. 1150054 (England and Wales) SC045081 (Scotland)

The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours and is making a difference every day to the lives of people with a brain tumour and their families. 

They fund pioneering research to increase survival and improve treatment options and raise awareness of the  symptoms and effects of brain tumours to get earlier diagnosis and to help families cope with everything that the diagnosis of a brain tumour brings.  They provide support for everyone affected so that they can live as full a life as possible, with the best quality of life.

They fund and promote the UK-wide HeadSmart campaign, raising awareness of the signs and symptoms of brain tumours in children and young people to make earlier diagnosis a reality.  Earlier diagnosis will reduce long term disabilities and save lives.  In just thee years, HeadSmart has reduced average diagnosis time from 9.1 weeks to 6.7 weeks.

Find out more at: www.thebraintumourcharity.org

Members of the Association of Medical Research Charities, The Information Standard, The Helplines Partnership and the Fundraising Standards Board.

Brain tumours – the facts

Brain tumours are the biggest cancer killer of children and adults under 40.

Over 9,300 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that’s 25 people every day.

Almost 5,000 people lose their lives to a brain tumour each year.

Thousands more are diagnosed with secondary brain tumours, which are not recorded.

Brain tumours reduce life expectancy by on average 20 years – the highest of any cancer.

Just 14% of adults survive for five years after diagnosis.

Brain tumours are the largest cause of preventable or treatable blindness in children.

Childhood brain tumour survivors are 10 times more likely to suffer long term disability than well children. 

This accounts for 20,000 additional disabled life years for all the children who are diagnosed each year.

Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. 

Over £500m is spent on cancer research in the UK every year, yet less than 2% is spent on brain tumours.

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