Tuesday 3rd February 2015 saw the launch of the Stevens Johnson Sysdrome (SJS) Awareness Campaign in the House of Commons. A delegation led by a leading scientist in the field (Professor Munir Pirmohamed), nurses, patients and the CRN: North West Coast visited the House of Commons to launch the SJS Awareness Campaign. The team met with the Rt Hon Margaret Hodge MP to introduce the campaign and most importantly enable survivors of SJS to share their experiences of this disease.
SJS is a serious disease most often caused by drugs, where the skin blisters. In the most severe form of the disease, called toxic epidermal necrolysis, at least 30% of the body surface is blistered akin to having third degree burns affecting more than a third of the body. There are no treatments available. Click here to see how devastating the disease can be.
For patients, it is important that they get medical advice as quickly as possible, so that appropriate advice can be given about whether to stop the drug. It is important to remember that stopping drugs unnecessarily can also cause problems and this should only be done with medical advice.
The team also wished to raise the importance of undertaking research to enable improved outcomes for patients in the future. Key research in SJS stems from Liverpool and is led by the Pharmacology research team (headed by Professor Munir Pirmohamed) through a dedicated team of clinical research nurses, many of whom are funded through the CRN: North West Coast. The research conducted by Professor Pirmohamed and the team is supported by a 'Drug Safety Patient and Public Involvement Group' established at the University of Liverpool in 2012. The research group has also forged strong relationships with SJS Awareness UK founded by Nadier Lawson. Patient, Carer and public involvement allows for the exchange of knowledge and experiences. The idea for the awareness campaign by means of a poster was developed by a member of the patient group and was an important part of the launch. Nadier Lawson said: "It's a dream come true today for fellow SJS survivors. It's our opportunity to work together to raise awareness in our communities and to share our experiences."
Image: Rt Hon Margaret Hodge MP (centre) surrounded by supporters of the SJS campaign during House of Commons launch
Raising awareness is required so that:
1. Patients can be aware that such reactions can occur
2. Health professionals can recognise the first signs of the disease and the drug can be withdrawn when appropriate
3. Research can be facilitated to develop tests that predict patients who are susceptible to the reaction, and so that we can develop specific treatments that halt the course of the disease.
To ensure the success of the campaign, we as a network will facilitate national dissemination of this SJS poster via the 15 regional CRNs, in order to reach out to as many NHS Trusts and GP practices across the country as possible. So please share this poster as far and wide throughout the NHS as you can to help raise awareness.
The support of Margaret Hodge to secure an official SJS Awareness Week in August will also allow the group to host annual local awareness events and continue the good work. Finally, it is hoped that the awareness campaign will generate interest in the need for 'SJS Awareness Training' for health professionals. Professor Pirmohamed commented: "Education is critical for early diagnosis. We need to raise awareness of this condition at the front door in A&E departments and GP practices."
Establishing and supporting patient involvement in this work is a key part of the team's strategy for the future.
Click here to view more information from University of Liverpool about SJS . You can also visit the SJS website at: https://sjsawareness.org.uk/ for more details.
Jacqueline A Pirmohamed
Chief Operating Officer
NIHR CRN: North West Coast