Surgeons and researchers from around the country and beyond gathered on Wednesday, 26th of November for the offical launch of the National Facial, Oral and Oculoplastic Research Centre (NFORC), which is funded by Saving Faces, in the Purcell room on London's Southbank.
World-famous actor and Saving Faces patron, Alan Rickman, officially opened the Centre, along with NHS Deputy Director, Mike Bewick. The event was presided over by award-winning journalist,Jon Snow.
Parveen Kumar, Professor of Medicine and Education, Barts & the London, School of Medicine & Dentistry, began the lectures programme. Using historical figures, she highlighted the importance of research in pushing clinical practise forward. Prof Kumar is the co-author of the influential textbook "Kumar and Clark's Clinical Medicine".
Pioneering surgeon, Bernard Devauchelle and his associate Sylvie Testelin, told the story of the world's first partial face transplant, which they performed in 2005.
Mike Fardy, consultant surgeon and President elect of the British Association of Head and Neck Oncologists (BAHNO), stated that rather than focusing on surgeons’ achievements we should focus on the complications they are facing and the questions they need to answer without having scientific evidence. Complications and uncertainties are many and collecting a lot of data from patients is the way forward in order to improve patient care and treatment. His view perfectly reflects NFORC's aims and vision.
But for many attendees the highlights of the day were talks by the patients themselves. Their stories brought genuine emotion to the event and gave substance to the science.
The mother of Anna, a toddler with a benign blood vessel tumour (haemangioma), spoke of her anxiety as her child's birthmark grew to the size of a golf ball. Being a doctor herself, she was shocked to realise how little research on effective treatments was available. As a parent, it was traumatic not to know what was best for her child and to pick surgical removal simply based on instinct! In a previous report you will have read about Jaia who also had treatemnt for a facial haemangioma.
George B, spoke eloquently about his horrific cycling accident and its aftermath. George underwent ten operations over three years to completely rebuild his jaw and teeth. "I am still no George Clooney" he said, "but at least I have a face."
Meanwhile, in the foyer, guests were both entertained and informed with live demonstrations, music, and a selection of paintings from the Saving Faces Art Exhibition.
Combating cancer, injury and disfigurement in the most socially important part of our bodies – the face and mouth
Saving Faces News Summer 2014
The most exciting and dramatic news of the year is that Saving Faces has collaborated with 3 national surgical specialties to create a world first! A National Centre dedicated to researching how best to prevent and treat facial and mouth diseases, injuries and disfiguring conditions. This National Facial Oral and Oculoplastic Research Centre, (NFORC) which Saving Faces (SF) funds has no equal anywhere in the world and will be studying the treatment of 2.5 million patients a year to define best treatment practice, I’d like you all to share in the excitement NFORC has generated in the surgical and research community in the UK and around the world and support it as best you can.
There’s other terrific news:
National Facial Oral and Oculoplastic Research Centre, (NFORC)
Considering all the activity our charity does we offer great value for money and this is because so many surgeons and their staff act as researchers and data collectors free of charge. But, NFORC will increase our annual spend by £350,000 to a total of £800,000.
The additional £350,000 a year will be spent on:
Most surgical treatments are relatively successful, but there is usually more than one treatment for the same condition and some are more successful than others. Unfortunately, the evidence for which treatment works best is not available anywhere in the world. Obviously, it would benefit all patients if we could correct this situation and NFORC is setting out to do just that, by carrying out “clinical audits” of treatment.
This research centre, funded by Saving Faces, is a world first. Using its research the UK will lead the world in finding answers to which treatment works best for all diseases, disfiguring conditions and injuries affecting the head, face, neck, and mouth. This revolutionary organisation will innovate and transform the lives of all patients with these conditions worldwide.
The 3 national organisations whose surgeons deal with these problems have made this possible by partnering Saving Faces to make NFORC their research unit. Their aim is that all surgeons in their organization will study the outcome of the treatment they use for every one of their patients. This level of collaboration has not happened anywhere else making NFORC unique and a world leader. We anticipate that the treatment results of 2.5 million patients a year will be available for study.
As a result of this successful collaboration the top surgical organization in England, the Royal College of Surgeons, has chosen NFORC to be its Head and Neck Clinical Trials Unit.
NFORC has already started conducting vitally important research with top surgeons in their fields for common problems that have yet to be solved. We’ve listed below some of these and the surgeons leading them. If you have had any of these problems we’d be delighted to hear from you – you might also help by joining one of our patient advisory groups:
In our last report for Global Giving you read about little Jaia. CEO of Saving Faces Professor Hutchison says,
"Jaia’s case shows exactly why we need NFORC. There are lots of different treatments for haemangiomas but they’ve never been properly compared in a scientific manner. So although each doctor thinks they know what’s best for their patient no doctor can actually put their hand on their heart and say what the best treatment is for each patient. Research by NFORC will resolve these dilemmas and lead to better outcomes for all facial and mouth conditions”.
My name is Jaia, I am now 11 months old. On Friday 20th December 2013 Professor Iain Hutchinson carried out surgery to remove a haemangioma on the bridge of my nose.
When I was around 6 weeks old I have had many appointments with local hospitals and a specialist surgeon who dismissed any further investigation or treatment, advising that I should be monitored till the age of 10 even though my vision was being affected, my facial features started to become disfigured and it was radiating a lot of heat.
My Mummy’s friend from work suggested that we contact Saving Faces which we did. Professor Hutchinson met with us and diagnosed the tumour as a haemangioma , although the tumour was benign a MRI scan was needed to investigate further and this was arranged at a local hospital.
Following the results of the MRI scan Professor Hutchinson advised the best route of action was for surgery, which after a lot of heartache for my Mummy and Daddy it was decided this was the best thing to do.
My operation was carried out successfully at St Bartholomew Hospital and after a big kiss from The Professor, I was up and about a few hours later and back home the following evening in time for my 1st Christmas.
Look at me now! My scar is healing fantastically and my facial features are back to normal. I am enjoying a full life and I am having lots of fun with my family especially my older sister Jasmine and brother Jayden.
We are now fundraising to raise money for this fantastic charity and help support Professor Iain Hutchinson and his team carry on his amazing work, without him I don’t know where I would be today. My family have got together, they have been making samosa’s and cakes to raise money, we have raised over £1000 so far! In June this year, my Mummy, Daddy, Aunt, Uncle and Friends will be participating in The 5k Colour run for Saving Faces in London.