Edinburgh mum hits out at ‘unfair special treatment’ on NHS

Jennifer Ure Stewart (Luke's mum) and Luke Stewart
Jennifer Ure Stewart (Luke's mum) and Luke Stewart

The mother of a terminally-ill youngster diagnosed with an aggressive brain tumour has hit out at the “special treatment” given to Dame Tessa Jowell who has a similar condition and was given a £240,000 skull cap that fires electric pulses into her brain.

Jennifer Ure Stewart described the decision to provide the Labour peer and former culture secretary with the pioneering device as “unfair”, adding that the 
treatment which is being trialled by the NHS in England should be rolled out nationwide.

Dame Tessa Jowell speaking in the House of Lords in London, she was diagnosed last May

Dame Tessa Jowell speaking in the House of Lords in London, she was diagnosed last May

Stewart is preparing to return to the Monterrey Vale Oriente hospital in Mexico, where her eight-year-old son Luke is due to receive his 13th treatment.

He was diagnosed with a brain tumour known as Diffuse Intrinsic Pontine Giloma (DIPG) in January 2017, with doctors giving him six to nine months to live.

Dame Tessa was diagnosed with an aggressive brain tumour last year and made a passionate speech about her condition, while wearing the skull cap in the House of Lords in January.

The device has been provided on a test basis by the NHS, with the costs covered by the manufacturer, US firm Novacare.

However, the cap is considered too expensive to be routinely offered and paid for by the health service.

Stewart, from Tranent in East Lothian, said: “It’s just unfair. I wish the woman all the best but this treatment is something that’s pioneering and is not widely available in this country.

“It could be brought to the UK to help not just Dame Tessa. Has it been tested on any other types of brain cancers?

“There are children who have to go through heaps and heaps of chemotherapy, they lose all their hair, they’re sick constantly and are in the hospital for months on end.

“So, could this be something that helps not even Luke but children who have something that’s not as deep-rooted as his tumour and they then wouldn’t have to go through chemotherapy?”

Stewart was spurred into a mammoth charity campaign which has raised over £187,000 on a Help Luke JustGiving page for his treatment.

The youngster will receive the results of his latest PET scan while in Mexico. It will be compared with last year’s one to see how much the brain tumour has shrunk.

A Scottish Government spokesperson said: “The NHS has processes in place to assess the use of devices such as the skull cap used by Ms Jowell.

“A clinical trial is under way which will provide evidence as to whether it’s appropriate for the treatment to be made available more widely.

“Eligibility for clinical trials will vary depending on the treatment.”