Butterfly Thyroid Cancer Trust

Butterfly Thyroid Cancer Trust is the only registered charity in the UK dedicated to supporting people affected by Thyroid Cancer. The most common endocrine malignancy can affect people of any any age or sex and is on the rise. Our CEO, Kate, founded ‘Butterfly Thyroid Cancer Trust’ following her own diagnosis in 2000. ‘Butterfly’ provides vital support and information directly to people affected by thyroid cancer via the dedicated telephone helpline, a website providing comprehensive patient information and patient support contacts and a BMA commended patient information DVD; and indirectly through its national and international network of professional care workers acting as an intermediary to facilitate engagement of doctors, surgeons, radiologists, pathologists and nurses to improve the patients’ treatment outcome. Kate also acts as the patient advisor/ representative on numerous working groups influencing the manner in which treatment guidelines are set out to improve the patient journey.

Syncona's support over the last 6 years has been invaluable

Funding provided by Syncona has enabled Butterfly to ‘spread its wings’ even further than it could ever have imagined in supporting people with thyroid cancer. Patients having radioactive iodine as part of their treatment are required to remain in isolation in a dedicated hospital room. Butterfly has engaged over 30 centres across the UK to provide wall glamour which greatly improves the patient experience whilst isolating. This project is ongoing at a cost of over £3,000 per room and has proved a great success. Patient and staff feedback is outstanding.

Funding has been granted to two leading London hospitals for research into cutting edge surgical techniques and genomic mapping specifically related to thyroid cancer.

A local PHD student is being sponsored over three years to research a doctorate into how thyroid cancer affects Quality of Life.

Implementation of the inaugural doctor/ patient thyroid cancer conference in London proved to be a massive success for patients and medical professionals alike.

Improved funding has enabled Butterfly to engage a much wider audience for its annual thyroid cancer awareness campaign  via our TV ad.

Moreover, our CEO has been more able to dedicate time as patient advocate to provide input into numerous medical trials and acting commissioner for Thyroid Cancer for NICE

Rachel's Story "Butterfly saved my life"

Kate was contacted by Rachel Newton’s mum in 2014, while the mother of three’s husband, Henry, was on tour in Afghanistan serving in the British military. Rachel says:

"Following a neck lump removal in my local hospital, I was told it was “probably fine”. Unhappy with the vague diagnosis, my mum contacted ‘Butterfly’ for advice after which Kate instigated a second opinion for my slides to be looked at by a leading pathologist in Newcastle. The second report was definitive in diagnosing a thyroid malignancy. I underwent further treatment to successfully treat the cancer, but without ‘Butterfly’s’ intervention, the outcome would have been considerably different. I am proud to be a patient support contact and trustee for this outstanding charity."

Key stats

Funded improvements to radioactive isolation units for 31 centres over the last 3 years

Dissemination of BMA approved ‘Thyroid Uncovered’ DVD to over 80 centres throughout the UK

'Neck Check’ event held in shopping mall attracted 997 participants

Holiday funding awarded to 18 individuals

Patient/ Doctor conference held in London 2016 attracted an audience of over 250 and will be repeated in 2021 due to popular demand

http://www.butterfly.org.uk/