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“It’s so important that everyone has access to the same treatment, care, support and medical expertise.”

Nic, 43, from Essex was diagnosed with a Grade 1 ganglioglioma after having absence seizures for nearly 10 years.

Nic has taken part in our Improving Brain Tumour Care survey to raise awareness and help ensure that everyone has the same access to treatment and care both before and after a diagnosis.

“The aspect of my experience which stands out for me more than anything else is how little most of us know about brain tumours. When I was having symptoms and over the next several years before I was diagnosed, I knew something serious was happening but I didn’t know what it could be.

“I did visit my GP several times and I was sent for various tests and scans to rule out diabetes or low blood sugar. The scans failed to find the tumour. I was also misdiagnosed with epilepsy and given various medications to manage that without success.

“I sought a second opinion and a further MRI scan revealed the mass and I had a craniotomy to remove it. The doctors told me that a ganglioglioma is most common in children so I may have had it since I had been growing up.

“It was following my surgery that I was told about The Brain Tumour Charity. I have since volunteered and supported campaigns for the organisation to help raise much-needed awareness.

“So, even when I was diagnosed, my family and I didn’t know about brain tumours, the different types, where they can grow or what symptoms they have. If we had known more about brain tumours then my symptoms could have made more sense at the time. There’s a huge need for greater awareness of brain tumours within our society.

“As my family and I have been through this experience, we have learnt so much and now understand more. So I think it’s really important to share this knowledge with others in order to make progress. It will improve the lives of others who are either directly or indirectly affected by a brain tumour both now and in the future.

“I received outstanding physical and emotional treatment and support from the neurology team and staff at The Royal Hallamshire Hospital in Sheffield. Their exceptional level of care particularly helped to reduce the stress and anxiety which comes with treatment which really positively contributed to my recovery. But this isn’t the case for everyone.

“It is so very important that everyone has access to the same treatment, care, support and medical expertise. Results from The Brain Tumour Charity’s survey will help ensure that this happens.

“We can find out more about patient experience and address where improvements need to be made. The survey results will also help patients themselves learn more about their own condition as well as treatment and other aspects of their experience which they may face in the future too.”

Take part in the surveys here

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org