Council Leader ‘Didn’t Know Where to Turn for Support’ for Daughter’s Incurable Brain Tumour

Published on: 6 Feb, 2022
Updated on: 9 Feb, 2022

Family photo of Debi and Tim Oliver with daughter Emily just before she was diagnosed.

By Julie Armstrong

local democracy reporter

Debi Oliver will always treasure the last Mother’s Day card she ever got from her youngest daughter.

Emily was 20 when she wrote it, but the writing looked like that of a small child.

Her brain tumour had advanced to the point she was struggling to use a pen.

“It broke my heart to see how much her writing had changed,” her mum said.

“But the sentiment behind it will always stay with me.”

She and her husband Tim Oliver, Surrey County Council’s leader, were at Emily’s bedside in Esher in July 2019 when she lost her fight 18 months after being diagnosed with an inoperable diffuse midline glioma.

Debi is a doctor and Tim leads a council with a £1billion budget, but even they say they struggled to navigate their way around the health and social care system when their daughter was dying.

Emily Oliver

Nearly three years later, they are still looking for answers for “why their girl was taken away from them” leaving an “Emily shaped hole in our hearts” and are fundraising for research into the rare and aggressive cancer.

The Brain Tumour Charity says investment in brain tumour research is low despite 33 people a day in the UK being diagnosed, and changes in survival rates have barely improved in 40 years.

A fighting fund started by Emily for her 21st birthday has now reached almost £100,000.

“She’d be overwhelmed to see that; she set a target of £300,” said her dad Tim.

“The thought that, from all the incredible generosity, there’s a chance someone could live a year longer – she’d be smiling.”

The Surrey County Council leader added: “I recognise that we were in a fairly privileged position both with my role and access to advice as well as my wife’s knowledge and experience as a GP.

“But even then we struggled in knowing where to look for support and help. This was a different league, it was out of our league and we struggled to know where to turn.

“For the last six [of Emily’s life] months we had a disabled child. Wheeling her along the pavement was a challenge, where there were no dropped kerbs. I know that’s a criticism of this council, but it’s true.

“For advice on what we needed to fit in the house, a handrail and so on, I found it really tough knowing where to go to get that information.

“And everything just takes such a long time, weeks for a blue badge. So it was a real eye-opener.”

Surrey County Council leader Tim Oliver took part in fundraising events to raise money for the Brain Tumour Charity.

He said teams really wanted to help but response times were often too long.

In the NHS too, Emily had a referral for an eye problem and got an appointment three months after she died.

“You get a diagnosis and you need an interpreter,” he said. “The consultants don’t mean to, but they don’t talk in normal language.

“It was never very clear what the pathway was – they’d say we need to do that, well, how do you access that?”

Debi, who used to work as a GP in East Molesey and Esher and is now part of the vaccination team at Sandown Park, said: “We have been told again and again that losing Emily was just bad luck but that’s not good enough.

“We’re so pleased that our fundraising has been such a huge success – we feel very fortunate to have had such an incredible amount of support from those around us.

“But we still need answers.”

Emily Oliver receiving treatment.

Emily, who was training to be a nurse at Nottingham University, underwent radiotherapy and chemotherapy, then saw a specialist in Los Angeles and consulted with a genetic analysis centre in Germany where DNA was taken from the tumour to create a personalised vaccine. But still it grew.

“She fought until the end,” said Tim. “Even in the Princess Alice Hospice she was still talking about the next term at uni.”

He and Debi will be raising money for Emily’s Fighting Fund at a wine-tasting event at Majestic Wine in Esher on Saturday, February 12, from 11am-3pm.

They will be joined at midday by deputy prime minister Dominic Raab, MP for Esher and Walton.

Funds so far have come from a celebration of Emily’s life attended by 500, sponsored skydives and walks by friends, and Tim doing RideLondon-Surrey in 2019.

For more information or to donate visit: https://www.thebraintumourcharity.org/get-involved/our-supporter-groups/supporter-groups/groups/emily-olivers-fighting-fund/