Working Together: from a tentative diagnosis and beyond

We should not underestimate the impact that a tentative diagnosis has on a parent, 

Watch Anthea's video and then read Emily's perspective of her diagnosis. 

as well as the impact on the patient, as Emily has described below from her own perspective. 

Nerve Tumours UK is looking closely at the information that is available to the patient, their family and carers after an initial diagnosis, and how to improve upon this.

We would like your thoughts, and so invite you to take part in this survey below.

Emily, on her initial NF2 diagnosis

The phone was ringing as my mum and I walked through the front door. 

It was my GP, Dr W. “You’ve got an appointment at the hospital Neurology department on Wednesday.”

Wednesday was in just 5 days’ time. We were returning from a consultation with Dr W when we got the call. 

It was the latest in a stream of appointments with him, that had begun 18 months before. I first presented with headaches. Over time, as the headaches worsened, so did my balance, to the extent that I was regularly falling down the stairs.

Eventually, I was referred urgently to Neurology, where I was diagnosed with NF2.

Dr W retired a few weeks later. In his entire career, which spanned five decades, I was only the second case of NF2 he had seen. 

By the time I was diagnosed, the hospital Consultant said, in words etched in my memory, “You have brain tumours that are so big they are about to kill you.”

Do I wish Dr W had diagnosed me sooner?
That’s a hard one to answer, because it didn’t happen! 

Do I blame Dr W for taking so long?
Not in the slightest. He was a wonderful GP.

Do I wish GPs were more educated in NF2, so that there’s a chance that others don’t need to go through what I experienced?
Absolutely definitely.

Not long after diagnosis and subsequent surgery, my family and I were put in touch with an organisation that became Nerve Tumours UK. They made – and continue to make - the difficult journey we find ourselves taking less difficult. Expertise, someone to talk to, people who understood, people who had actually heard of NF2, people who said they were there for us and proved it.

In my opinion and experience, NTUK offers a wealth of information and care for both medics, patients, and their families, and is an excellent resource for navigating NF.