Launched the Patient Guide to empower patients when discussing their treatment and care, developed with clinical and patient experts
Worked with the Tessa Jowell Brain Cancer Mission to integrate the Patient Guide into the Tessa Jowell Centres of Excellence
Establish a patient pathway quality standard, with 90% of patients following this by 2020
Improve the NHS experience of adults with brain tumours from the bottom four to top four cancer types by 2020
The Patient Guide was published in 2016 and later developed into the National Brain Tumour Standard of Care
On average, patients benefited from 39% of key services set out in the Patient Guide in 2016 and 50% in 2020
The overall experience has improved but sadly, brain tumours remain last on the list of 13 cancer types
Dame Tessa Jowell strove to make change so that all of those affected would have access to excellent treatment
Dame Tessa Jowell with Sarah Lindsell, our CEO (left) and Sarah Jones, MP (right)
In the final year of her life, Dame Tessa Jowell was diagnosed with a glioblastoma.
In January 2018, she delivered a parliamentary speech in which Tessa said that all patients should benefit from “the latest and greatest science” and called on us to focus on “living well with cancer, not just dying from it”. She received the first ever standing ovation in the House of Lords.
Two years after her death, the Tessa Jowell Centres of Excellence award now recognises UK neuro-oncology centres who offer excellence in both brain tumour treatment and research, with a strong focus on quality of life care.
The Brain Tumour Charity is a founding member of this collaborative initiative that is driven by our community living with a brain tumour, health professionals and scientists, to define, identify and promote excellence.
“When defining and setting the standards we were always thinking ‘is this good enough so that I would confidently send my own family member there for treatment?’ If the answer to the question was, yes, then we included this in our standard.”
Professor Kate Bushby, former Vice Chair of the EU Committee of Experts on Rare Diseases and Chair of The Tessa Jowell Centres of Excellence. Kate’s husband died from the same tumour as Tessa and she has come out of retirement to apply her experience in setting up centres of excellence for brain tumour patients.
“Brain tumours are among the most challenging to treat cancers. Partnership between the NHS and the Tessa Jowell Brain Cancer Mission to found the Tessa Jowell Centres, represents an enormous step forward in ensuring equality and excellence in care for patients across the UK, wherever they live.”
Professor Peter Johnson, The National Clinical Director for Cancer at NHS England
*This represents the majority of people for whom 5-ALA is clinically indicated.