The Rt Hon Margaret Hodge MP for Barking led a Westminster Hall debate on “Awareness and funding for the treatment of SJS/TEN” on Wednesday 13th July following the launch of our SJS Awareness campaign poster in February last year.
In the debate the MP described some of the harrowing experiences of SJS/TEN survivors she had become aware off including, the case study of Stuart Doyle from last year’s campaign launch and went on to describe the devastating effects SJS has on a person.
It was said how important research is into this rare disease but funding is limited. Also mentioned was the MRC Centre for Drug Safety Science and Wolfson Centre for Personalised Medicine at the University of Liverpool – a great team doing research into how SJS reactions occur.
Dame Margaret Hodge presented 5 things that the government can do to help improve the current concerns surrounding SJS/TEN:
1. More funding into SJS and how the reaction occurs.
2. A commitment to ensuring SJS is taught in medical schools, nursing schools and in ongoing professional development
3. Deliver the fantastic SJS Awareness UK poster on spotting the signs of SJS/TEN to GPs nationally.
4. Call for SJS Awareness week in August
5. Ensure that the British Association of Dermatologists pathway is adhered to across the country.
We would like to thank you all for supporting this important debate. You can watch the debate here if you missed it on the day.