Mother accuses minister of ‘abandoning’ brain tumour patients

Fury as government snubs call to help cut deaths

A MOTHER whose son battled a brain tumour has accused ministers of ‘abandoning’ people affected by the disease after they refused to include it in the government’s cancer awareness campaign.

Rosalind Bell’s son Daniel was diagnosed with a brain tumour last year at the age of three after she matched his symptoms with information she had spotted on a friend’s Facebook page.

Now she is backing The Brain Tumour Charity’s call for the government to help raise awareness of brain tumours, which kill more children and adults under 40 than any other cancer in the UK.

But in a statement which has infuriated campaigners, Public Health Minister Jane Ellison suggested there were not enough preventable deaths from the disease to merit its inclusion in the government’s Be Clear on Cancer symptoms awareness drive.

In response to a written question from MP Roger Godsiff asking why brain tumours were excluded from Be Clear on Cancer, Ms Ellison said: “A number of factors are taken into account when deciding which campaigns to develop and run, with one of the main criteria being the number of deaths that could be avoided through earlier diagnosis.

“The focus for national campaigns so far has therefore been on lung, breast (in women over 70), bowel, kidney and bladder, and oesophago-gastric cancers.”

Ms Ellison said the Department of Health would keep the campaign under review and work with ‘relevant experts’ to see what might be done to increase awareness of other cancers, such as brain tumours.

Her statement prompted fury among families affected by brain tumours, who contacted The Brain Tumour Charity to express their anger.

Mrs Bell, from Ormskirk in Lancashire, said: “They might as well say our children’s lives are worthless.

“I doubt the people making that decision have ever had to sit in a room and be told their child – or loved one - has a brain tumour. Nor have they had to watch loved ones suffering the devastating side effects like epileptic fits and blindness.

“It feels like the government has abandoned everyone living with this cruel disease and are failing in their duty of care.”

A survey by The Brain Tumour Charity in 2013 found that more than a third of people with a brain tumour had visited their GP at least five times before they were diagnosed and 62 per cent were diagnosed only after a desperate visit to A&E.

Mrs Bell, 34, is grateful that Daniel is one of the “lucky ones” who benefited from early diagnosis. His tumour was discovered thanks to a friend’s Facebook post about The Brain Tumour Charity’s HeadSmart card, which lists the symptoms of children’s brain tumours.

She said: “If I had not seen the HeadSmart card on Facebook, I would not have recognised Daniel’s symptoms. I’m so grateful to the brilliant NHS staff and The Brain Tumour Charity – that little HeadSmart card saved my precious little boy’s life.

“Now we need to raise awareness and I urge the government to change its mind. Brain tumours must be included in the Be Clear on Cancer campaign. Early diagnosis saves lives and can reduce long-term disabilities. It is illogical to exclude the biggest cancer killer of children and young adults.”

Mrs Bell and her husband Colin, 35, had put Daniel’s grumpiness and tantrums down to a toddler phase.

Then he became lethargic and was always bumping into things.

When he started being sick several times a week and woke up with a headache one day, alarm bells started ringing. They were exactly the symptoms she had seen on her friend’s Facebook post about HeadSmart.

Mrs Bell took him to see a GP but the next morning, Daniel could hardly move and was vomiting. At Ormskirk Hospital, he had a CAT scan which showed a “mass” in his brain.

That afternoon he had a three-hour operation at Alder Hey Children’s Hospital to insert a drain to relieve the pressure on his brain and an MRI scan. It showed Daniel had a tumour the size of an adult fist.

Daniel was in intensive care for four days and back home just 10 days after his diagnosis in June 2014. When the results came back, it showed his tumour was a grade one pilocytic astrocytoma.

Now aged four, he has MRI scans every few months and is back to his usual boisterous self.

Others who took to The Brain Tumour Charity’s Facebook page to comment on Ms Ellison’s statement said:

“So frustrating. They wouldn't be saying that if symptoms in their 5-year old daughter were missed for 2 years. They call brain tumours the Cinderella cancer-no wonder!”

“…no words can describe how angry I am…”

“How many people need to have to have their lives totally devastated and debilitated by this dreadful illness before they take notice?”

Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “We are obviously disappointed with Jane Ellison’s response and we fully understand the dismay and anger it has caused among our supporters.

“We recognise the effective work that Be Clear on Cancer has done to raise awareness of certain types of cancer.

“But its impact would be much greater if it also included brain tumours, which kill more children and adults under 40 than any other type of cancer.”

https://www.facebook.com/thebraintumourcharity?fref=ts

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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About Us

The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity, committed to fighting brain tumours on all fronts. We fund scientific and clinical research into brain tumours and offer support and information to those affected, whilst raising awareness and influencing policy. Our aim is to improve understanding, diagnosis and treatment of brain tumours.

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Brain tumours are the biggest cancer killer of children and adults under 40.
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Ministers have refused to include brain tumours in the government’s cancer awareness campaign, as Public Health Minister Jane Ellison suggests there were not enough preventable deaths from the disease to merit its inclusion.
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Quotes

We recognise the effective work that Be Clear on Cancer has done to raise awareness of certain types of cancer. But its impact would be much greater if it also included brain tumours, which kill more children and adults under 40 than any other type of cancer.
Sarah Lindsell, CEO of The Brain Tumour Charity
They might as well say our children’s lives are worthless […] It feels like the government has abandoned everyone living with this cruel disease and are failing in their duty of care.
Rosalind Bell, a mother whose son battled a brain tumour