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.
FOR THE YEAR ENDED 30 JUNE 2013
The trustees present their report and the financial statements of the charity for the year ended 30 June 2013.
STRUCTURE, GOVERNANCE AND MANAGEMENT
The trustees keep the major risks to which the charity is exposed under review and, where reasonable and practicable, procedures have been established with a view to mitigating the consequences of those risks that have been identified.
OBJECTIVES AND ACTIVITIES
The objective of the charity is to apply its income as the trustees from time to time think fit for the relief of need, sickness and distress. In particular promoting research into the prevention, causes and treatment of oral and facial diseases, disorders and injuries (and publication of the useful results of such research) at the department of oral and maxillofacial surgery at The Barts and London and at the oral and maxillofacial surgery department of such other hospitals or institutions in the United Kingdom as the trustees think fit.
ACHIEVEMENT AND PERFORMANCE
We have two new full time clinical researchers, Amrita Bose and Damien Goh. Muna Jalo has left the charity. She has a young child and has found a new job closer to her home. Caroline Layton took up an appointment as administrator on 20th May 2013. Our previous administrator Samantha Tam is now Executive Officer. Her chief role is managing the charity’s finances.
This financial year has been an exciting one for the charity. Saving Faces has created and is funding the world’s first National Facial and Oral Research Centre (NFORC) to determine how best to treat all patients with facial disease, deformity and injury. The Research Centre’s ambitious aim is to continuously collect data on the outcomes of treatment received by every patient in the UK who has a mouth or facial injury or disorder. We have signed a contract with the NHS information service, now called the Health and Social Care Information Centre (HSCIC), and they will host our on-line database. Saving Faces will pay HSCIC the sum of £60,000 for a web-based data collection and storage system. This will also pay for the first 2 audits. The cost of a third audit will be £15,000. There is an annual management fee of around £27,000.
Through NFORC, Saving Faces is collaborating with the Bart’s Clinical Trials Unit. The Royal College of Surgeons (RCS) has selected this collaboration as its designated ‘National Head and Neck Clinical Trials Unit’. Saving Faces has committed to pay the Royal College of surgeons £30,000 per annum for 5 years to fund the surgical trials unit plus £15,000 per annum for 3 years for the salary of a speciality lead.
To help raise awareness of the research opportunities available to surgeons through Saving Faces/NFORC we had a stand at the British Association of Oral and Maxillofacial Surgeons (BAOMS) conference in Dublin and held a research summit in June which was well attended and identified a range of potential projects.
It is clear from the above that the charity is entering a new phase with NFORC and that we are committed to a significant increase in annual expenditure.
In addition to setting up NFORC and establishing the National Head and Neck Clinical Trials Centre, Saving Faces it is worth documenting that Saving Faces has achieved a great deal in the field of research. A summary of some of our achievements to date is given below.
Funded Jo Archer for cancer psychology PhD supervised by Prof Ania Korszun. Two publications
Funding Emmy Lou Ratz and Farah Aga for psychology PhDs on trauma and cancer. PhD supervised by Prof Ania Korszun. Prizes won at National Cancer research Institute conference and William Harvey Research day. One publication.
Funding Molecular Biology projects and PhDs on looking for genetic markers to detect mouth cancer at an earlier stage with Drs Teck Teh and Waseem Ahmed. Three publications.
Funded 2 BAOMS/Saving Faces Research Fellowships Jag Dhanda and Michael Ho studying epigenetics of mouth precancer and cancer. Supervised by Professor Richard Shaw, Liverpool.
Funding new BAOMS/Saving Faces Research Fellowship Nav Vig on stem cell behaviour in mouth cancer
Funded Helena Emich for PhD on stem cell behaviour in mouth cancer. Supervised by Professor Ian Mackenzie. One publication.
We recently held the first meeting of a patient research advisory group, made up of patients from our Expert Patient Helpline. Now that we have set up NFORC and have started to consider a variety of different research projects, patient input will be invaluable in evaluating the structure and content of questionnaires, consent forms etc., and this will also aid in securing funding for projects.Sheila Harvey, a retired community nurse volunteer, is running our patient research advisory groups.
Saving Faces supporter and patient, Josh Stephenson, featured on the Embarrassing Bodies, Stand Up for Cancer special on Channel 4.
Saving Faces featured in a documentary made for Channel Five about the story of a young girl with a very rare tumour, cemento-ossifying fibroma. Professor Hutchison has operated on Tare and Saving Faces is helping her to raise the money to cover travel and other costs. We gained permission from Channel 5 to preview the film and through a contact we held a private screening sponsored by Deloitte and held on their premises. This film has helped to raise £7575.64 for Tare so far and has certainly increased public awareness of Saving Faces.
Professor Ian Mackenzie is a stem cell biologist whose research is part funded by Saving Faces. Evidence has been mounting that small numbers of stem cells within tumours actually orchestrate their growth and proliferation. This exciting research was recently reported in an article and published in the Daily Mail.
Sam Strickland is the son of a mouth cancer patient and a successful documentary maker. He is currently making a documentary about the work of Saving Faces.
Events and Fundraising
On 18th March 2013, Iain gave a fascinating talk at King’s Place on the history of OMFS surgery and his own experiences as a surgeon. This was followed by a discussion with the author, Louisa Young, about her book, My Dear I Wanted to Tell You. Louisa's grandmother worked with pioneering surgeon Major Harold Gillies; they both make appearances in her novel about love, war and the birth of modern oral and maxillofacial surgery in World War One, which moves between France and Britain to tell of the experiences of those at home as much as those on the Western Front.
The carol concert in the church of St Bartholomew the Great on 17th December 2012 was very well attended as usual. It was a wonderful opportunity to meet with patients and supporters.
We made a profit of £200 at the Bart’s Christmas Fair on 13th December 2012 as well as raising awareness of the charity.
Our fantastic supporters have been as busy as ever raising money. Some examples follow, and apologies if we have missed out some events, we are hugely grateful to everyone who helps us. We have had supporters running in the December Santa Run, Berlin half marathon, Manchester and Milton Keynes marathon, BUPA 10K and the London Marathon. The son of one of our SEND patients owns and runs an Indian Restaurant. Last year he organised a poppadum challenge and for this year his fundraising event for Saving Faces was Man versus Food; 5 Indian wraps...5 heat levels! 30 minutes! The sister of a 47 year old man who was recently diagnosed with mouth cancer contacted us and is raising funds by selling handmade bags. Dentists and surgeons have cycled from London to Paris, London to Amsterdam and from Land’s End to John O’Groats.
Andrew Knott did a 78 mile sponsored walk between his office in London and Hampshire. In November last year one of his family friends, Rosie, was involved in the ‘Bonfire Night M5 pile-up’ in which 7 people tragically lost their lives and 51 were injured, some very severely. Rosie survived but suffered serious facial injuries as well as a fractured skull, broken arms and other injuries requiring skin grafts. A team of maxillofacial surgeons spent many hours reconstructing her eye socket, jaw and nose. Rosie’s GP gave her one of our Helpline leaflets which he had received in our mail out. Rosie and her mother contacted the helpline and have since become great supporters of the charity and they inspired Andrew to do his walk to raise money for us. Rosie’s mother, Angela raised money with her colleagues by taking part in a swimming challenge.
A student supporter organised a masquerade ball on a boat on the Thames.
Student Groups and the Bart’s and the London Student Saving Faces Society
The Barts and The London Saving Faces Society has been established and is affiliated to Queen Mary Students' Union. It has the following aims and objectives: 'To raise awareness of Saving Faces, provide talks about maxillofacial surgery for students, to fundraise with exciting events and to give students access to maxillofacial placements/electives.'
The founder of this society is a medical student and the treasurer is a dental student, the ideal combination for a student society affiliated with a charity dedicated to improving the prevention, detection and treatment of all facial injuries and disease. The society held a stall during fresher’s week and many students registered their interest. Saving Faces surgeons have set up a teaching component for Dental and Medical Students on clinical research and also an evening lecture programme. The society will circulate information on these opportunities to all UK medical and dental schools and try to create Saving Faces Societies in all these schools.
The evening lecture programme organised by the surgeons and the Saving Faces student society was hugely popular. A Saving Faces surgeon who is an expert in any particular topic (e.g. mouth cancer) gave a lecture, then a professional from a related specialty gave a talk, (e.g. Psychological aspects of being diagnosed with mouth cancer) and finally our patients gave accounts of their experiences. The society is very popular amongst the dental and medical students and there was fierce competition for places on this year’s committee. The new committee has now been established and they have a wealth of ideas for events over the coming academic year. The lecture series is included in the plans.
Saving Faces is working to educate medical and dental students about oral and maxillofacial surgery and about the research being carried out in this field. We are helping to train the doctors, dentists, surgeons and researchers of the future for the benefit of all sufferers of oral and facial disfigurement, injury and disease.
New Saving Faces Website
The Saving Faces website content needed reviewing and updating since the creation of NFORC. The contract to help design and host this new website was won by Bite the Cherry. Working closely with the team at Saving Faces the team at Bite the Cherry are creating a more user friendly website, attracting donations with increased hits for both the public and professionals interested in NFORC and SFDADS. The new website will address access to different types of information by different user groups, such as donors, dentists accessing SFDADS, patients, surgeons and other researchers accessing NFORC.
The Saving Faces Diagnostic Advice Service
The Diagnostic Advice Service is a service provided by Saving Faces todentists and other primary care services for a small annual subscription. Imagesof mouth lesions are received electronically from dentists or general practitioners who have signed up for the service. These are looked at by oral and maxillofacial surgeons who provide advice on future management of the patient within three working days. The feedback from dentists and their patients has been consistently positive. 52 cases were sent to SFDADS between 27/07/2011 to 25/03/2013. 2 cases were diagnosed as oral cancer. The first case was a very early lesion in a 57 year old man and the second was a more advanced lesion with biopsy positive lymph nodes in a 72 year old woman. They were both treated within a week.
Recently released CRUK statistics have been picked up by the media and demonstrate that for many cancers, adjusting for age, death rates are set to fall dramatically in the coming decades. However, the death rate for cancers of the liver and mouth will increase over the next two decades. The oral cancer rates are continuing to rise in both men and women and in all age groups including the under 50s with more young people developing oral cancer than ever before. Dentists are being called on to do more in terms of prevention and early diagnosis. One way for them to do this and to receive reassurance, training and support is to sign up to SFDADS. We must capitalise on this.
We have two dentists working with us as clinical researchers and they will help to put together an online series of questions with images and cases based on SFDADS patients. This will be sent out to our subscribers and upon satisfactory completion they will be awarded verifiable CPD points.
Saving Faces had a stand at the BDA conference at the London ExCeL on 25th -27th April 2013 with the aim of publicising SFDADS and signing up more dentists. Professor Hutchison, Clinical Researchers, Medical and Dental students and patients went along together to promote the diagnostic service. On Thursday 25th our trustee, Susan Dawood gave a talk with her husband, Andrew, ‘Restoring Implants in Practice - The Scope of Implant Dentistry’. Both Susan and Andrew are featured in a British Dental Journal interview in which Saving Faces and SFDADS are highlighted.
Elgin Dental Care, a private dental practice in West London, is donating £1 to Saving Faces for each dental examination booked between 1st April 2013 and 1st October 2013. They read about us in an article in the Association of Dental Administrators and Managers newsletters.
The Declaration of Trust gives general power to the trustees to invest funds in accounts with banks or other financial institutions, in buying property or making secured loans.
Saving Faces has created and is funding the National Oral and Facial Research Centre. This important and exciting venture brings with it a significant financial commitment. As a result of this and being mindful of continuing unstable economic times, we are keen to endeavor to ensure that we have a reserve in unrestricted funds to cover costs for a minimum of 2 years. It is important to note that we keep administrative costs to a minimum and our Chief Executive does not take a salary.
We are pleased to announce that a new Barts and The London Saving Faces Society has been established and is affiliated to Queen Mary Students' Union. It has the following aims and objectives: 'To raise awareness of Saving Faces, provide talks about maxillofacial surgery for students, to fundraise with exciting events and to give students access to maxillofacial placements/electives.'
Saving Faces is working to educate medical and dental students about oral and maxillofacial surgery and about the research being carried out in this field. We are helping to train the doctors, dentists, surgeons and researchers of the future for the benefit of all sufferes of oral and facial disfigurement, injury and disease.
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