My husband died and I never felt so let down - now I need your help

Ellie James' husband Owain died of a brain tumour and she is campaigning for a law in his memory, called Owain's Law. She recently spoke to MPs in Parliament to explain the law she wants brought in and why she wants it. Here are her words...

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Owain James, pictured with daughter Amelia, died after being diagnosed with a brain tumour. His wife Ellie is now fighting in his name for a new law across England and Wales

WHEN my husband Owain was diagnosed with a grade four brain tumour aged 34, we were told he was having the "gold standard" of treatment.

Yet, this is the same treatment Owain's grandad had received in the early 1990s when he had the same thing.

In 1926, glioblastoma was first termed, and back then it was found the average survival was 12 months.

In 100 years, we have only moved that forward by three more months.

I have never felt so let down by the NHS. Right from Owain's diagnosis, through his treatment and in his death.

But the biggest failing was the way in which his brain tissue was handled.

When Owain was told he had a 14cm grade four astrocytoma, I remember him saying to me all he wanted was our daughter Amelia to remember him.

His motivation to live made him into the bravest person I have ever seen.

Just three days after his diagnosis, Owain had 7cm of his tumour surgically removed.

Not at any point did anyone have a conversation with us about tissue preservation or storage, so we just had no idea about the importance of it.

Following Owain's surgery, I had a one-to-one meeting with the oncologist. She told me in no uncertain terms that I had no hope.

She told me his tumour would not regress and treatment will only hold it back for a period of time until it regrows.

In fact, she told us not to waste our money on any private medicine, and she even asked Owain why he was so positive all of the time.

Owain decided to have a personalised vaccine made using his own tumour tissue to reeducate his immune system.

Unbeknown to us, most of his tissue removed was put into paraffin wax and once that happens, you can't change it back.