Saving Faces submits a report to the charity commission for each financial year.
Here you have the opportunity to read the full report for our last financial year, ended 30 June 2012.
ACHIEVEMENT AND PERFORMANCE
The year ending June 2012 was a busy and rewarding year for Saving Faces. There were a number of staff changes. In August our liaison officer, Louise Lemoine, changed from working full time to three days a week. Two of our clinical researchers left, Miriam Tadesse to study for an MSc and Clio Hutchison to study medicine. Muna Jalo returned from maternity leave and our part assistant administrator, Donna Coote left us in October 2011.
Our SEND trial is comparing two standard surgical approaches to the treatment of small oral squamous cell carcinomas and aims to determine whether a prophylactic neck dissection improves survival without compromising patients' quality of life. Funding from Cancer Research UK (CRUK) is reviewed annually and they agreed to extend our funding for 12 months starting on 1st May 2012. The total amount agreed for the 6th year of the study is £110,524. There are 2 more years of CRUK funding available if, on the basis of our annual report, they agree to continue to provide their support.
A database has been completed and information on all 186 randomized patients has been entered. Our collaboration with Professor Anil D’Cruz from the Tata Memorial Hospital in Mumbai continues. He has agreed to provide us with basic health status and survival data on his 434 recruited patients, which should allow us to reach our target of 652 patients within the next 12 months. This information will be merged with the SEND data and after analysis will be assessed by the Independent Data Monitoring Committee who will report back to the Trial Steering Committee later this year.
Patients who do not consent to take part in SEND are invited to take part in a sub study, donating tissue and blood and allowing us to follow them up in much the same way as we follow patients in the main trial. To date, we have recruited 69 patients who did not want to be in SEND and 72 patients who were withheld, for medical reasons, by their surgeon or MDT. Data from these patients will provide a useful comparator, allowing us to assess whether the randomized patients are representative of the target group.
Saving Faces continues to fund four PhD studentships and, together with the British Association of Maxillofacial Surgeons, a Head and Neck Research Fellow
Jag Dander is the Head and Neck Research Fellow and is a surgeon working at the University of Liverpool. Previous research suggests that only a quarter of mouth cancer patients with extra capsular spread (ECS) survive 5 years and Jag’s project aims to validate a genetic expression pattern that could be used as a molecular signature to predict the likelihood of individuals having ECS. Cell lines from patients with and without ECS are being established for use in future research, which will look at factors influencing cell migration and invasion patterns. In the next phase of the research he will explore the effects of existing drugs used in the treatment of metastatic head and neck cancer on these models. By identifying the molecular processes that cause ECS we hope to identify potential targets for future therapies.
Farah Shiraz and Emmylou Rahtz are PhD students and the main goal of their project is to get a better understanding of how patients and their families feel after going through facial surgery, and they are each working on different elements of the same overall project. Emmy’s research focuses on the patients themselves; people who have had head and neck cancer or injuries to the face, and looks at their emotional wellbeing. Farah’s project investigates the quality of life of partners as well as patients, and looks into how partners’ emotional states can influence patients’ wellbeing.
They are interested in the different ways people cope with what can be a very difficult experience, and which can lead to anxiety, depression and stress problems – whether they are going through it themselves, or supporting someone in their family through it. They are investigating this by asking people and their partners (if they have one) to answer a set of questionnaires, and to take part in an interview. Their hope is that the research findings will help medical staff to identify people who might need some extra emotional help, whether they are patients or their family members. If they can be identified and helped early on, this might lessen the distress.
Helena Emich is a second year PhD student at the Blizard Institute under the supervision of Professor Ian Mackenzie and Professor Iain Hutchison. She is working on oral squamous cell carcinoma. Despite recent advances in treatment, the mortality amongst OSCC patients remains too high. It is therefore very important to understand why oral cancer fails to respond to treatment in order to develop more efficient treatment strategies to help more patients.
There is now evidence that tumours consist of different populations of cancer cells. Only a minority of cells in the tumour has the ability to divide indefinitely, producing more and more cancer cells. These cells are called “cancer stem cells”. Sometimes these cells can leave the primary tumour and initiate new tumours in other parts of the body.
Looking at cancer stem cells, this PhD project focuses on comparison of oral tumours that have formed neck lymph node metastases with tumours that have not metastasised. Pinpointing the fundamental differences between tumours that are able to spread in the body and tumours that are not able to do so could hugely improve cancer diagnosis and treatment.
A fourth Saving Faces funded PhD student is aiming to develop a sensitive, reliable and fast cancer diagnostic test for mouth cancer by using a new gene quantification method which can detect the presence of cancer cells by measuring the levels of cancer-causing genes in tissue biopsy samples. A reliable diagnostic test would enable clinicians to give appropriate tailored treatment which will make a real difference to patients.
On the 8th of July 2011 we held a research opportunities day. The aim of the day was to make specialist doctors in Oral and Maxillofacial surgery aware of current research underway in their field and highlight ways in which they could become involved. There were talks from a range of specialists covering a wide variety of topics, including clinical trials in maxillofacial surgery, ethics, molecular biology and psychology.
We are moving forward with our National Study Centre project. Saving Faces is committed to reducing facial injuries and diseases worldwide through research and has combined with the UK's national surgical organisation, The British Association of Oral and Maxillofacial Surgeons (BAOMS), to create the National Facial and Oral Research Centre.
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. This will entail scrupulous data collection by UK surgeons and their assistants, consent by people to be followed up over time to determine the long-term results of their treatment, and studying these results to determine best treatment practice. We have agreed that the NHS information service, now called the Health and Social Care Information Centre (HSCIC), will host the on-line database. We have finalized our initial specification and are currently waiting for a quote for the setting up and management of the database and the hosting of the first 2 audits, which will focus on Orthognathic Surgery and the Surgical Treatment of the 3rd Molar. The advantages of the HSCIC system are:
If the quotation is reasonable we will confirm our acceptance on the understanding that they can deliver a working system by the end of 2012.
Saving Faces Art Collection
The Saving Faces artwork continues to make an impact and has been exhibited at a variety of medical conferences and fundraising events. In November 2011 selected paintings were displayed at the National Cancer Research Institute Conference in Liverpool.
Ryan Cheong, the chairman of Imperial College Surgical Society, organized an art exhibition with a talk by Prof. Hutchison in January 2012 at their South Kensington campus to raise awareness and funds for Saving Faces. This was a highly successful event. The Art Society supplied easels for displaying the paintings which they subsequently donated to the charity. A number of students have signed up as supporters.
A young Saving Faces supporter learned about the charity through her medical student friend who had already organised a number of successful art events for Saving Faces and has recently qualified as a doctor. Much to our delight and lasting gratitude, she decided to hold her birthday celebrations on Saturday 28th April 2012 in a new art gallery in Hackney, where she organised a masked ball and exhibition of Saving Faces' artwork for her family and friends.
The artwork was also displayed at the BAOMS annual scientific meeting in June 2012 where the paintings invited a great deal of interest and provided a valuable addition to the series of lectures and the symposia.
The Saving Faces Diagnostic Advice Service
The Diagnostic Advice Service is a service is provided by Saving Faces to dentists and potentially to other primary care services. Electronic images of mouth lesions will be received by email from dentists 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. The cost of the service is £3 per week per dentist, up to a maximum of £9 per practice.
Hannah Hume, a daughter of a patient, is our contact at the Association of Dental Administrators and this association has been promoting our service. Information about the service featured on their stand at the Dental Showcase (a popular Dental Trade Exhibition) in October. Saving Faces is their charity of the year and they have published two articles on the charity in their widely distributed newsletters, one including the instructive story of Hannah’s father’s mouth cancer which was initially missed by a dentist. This story is published on our website.
Ten dentists have completed an on-line feedback survey. All the respondents agreed or strongly agreed with the following statements: SFDADS was easy to use, SFDADS enhances the service that I can offer my patients, I would recommend SFDADS to other practitioners and the advice I received was clear
The free text comments from the dentists were extremely positive e.g. “It was easy, helpful and as such ideal within our busy practice, I complement you on the service as does my patient”; “This service should be available to all patients. Lives would be saved”.
Comments on the reactions of their patients included: “Relieved that probably not malignant. Happy with speed of response.”; “Very impressed and grateful for the quick information”; “ He felt as if his issue had really been addressed rather than being filled away someway”; “They were reassured”; “The patients were both extremely happy with the level of care demonstrated”
We accepted the offer of a free stand at the annual British Dental Association conference on 28th April in Manchester. It was an excellent opportunity for us to inform dentists about our service.
We have obtained a mailing list of the 10,000 General Practice managers in The UK and sent out Helpline posters and information to them all.
The members of a patient Mouth Cancer Support Group, Bits and Pieces, who came along and visited Saving Faces in the summer, signed up as Expert Patients and they have written a short article on how they came together and the benefits of talking to other people who have gone through similar experiences and this is published on our website..
We have distributed helpline posters to a number of GP surgeries and recently managed to run an advert in the Metro and in Evening Standard at no cost.
The helpline was also highlighted by Iain in an interview for Radio London Drivetime on a young girl treated for a haemangioma and as a result we received a number of queries from the parents of children with this condition.
The Saving Faces Helpline is now an Associate Member of the Helplines Association (THA). THA has extensive experience in working with hundreds of helplines, both nationally and internationally and is the membership and good practice organisation for email, SMS, internet and telephone-based helplines. The Saving Faces Expert Helpline is also listed on the Online Helplines Directory.
We had an excellent response to a request made to our Expert Patients to form a patient group to give feedback on our research projects. The group includes representatives from all ages, both genders and a range of conditions, including cancer and trauma. Patient input will be invaluable and provide help with existing projects as well as assistance when deciding on future research. Furthermore, patient involvement will also aid in securing funding for projects.
Fund Raising Events
The 2011 Cycle Day on Saturday 3rd September was a great success, very much helped by the fantastic weather. Money raised as a result of the Cycle Day is £42,332. Redbridge Cycling Centre is a superb venue with helpful staff. We had over 120 cyclists of all ages and abilities including surgeons, dentists, patients and general supporters. AS level students from Ealing, Hammersmith and West London College had heard Iain talk and were inspired to find out more about Saving Faces and to raise money for us. They have come along to offices and worked as volunteers over the summer, signed up for work experience with Iain and one of them, Iain’s namesake, Antonia Hutchison, cycled from Ealing to Hainault with her boyfriend to take part in the cycle day. It is obviously important to actively encouraging the support of these future doctors and scientists.
We have a Saving Faces Facebook page with a linked Student Group created for medical and dental students.
We are aiming to bring together supporters from a range of medical colleges and to set up Saving Faces Societies in the different Universities within each student union.
The various Saving Faces societies will engage in:
Students will benefit from the following:
Dental schools will also have societies and we are keen to encourage the sixty or so first year dental students to become actively involved with Saving Faces. We have produced an electronic Student Supporters’ registration page, the link to which can be sent out by email to the presidents of the student unions, all interested students, put onto our website and on Facebook.
Several students ran the London Santa Run on the 6th December
The 2012 annual bike ride took place on June 10th at Redbridge Cycle Centre again and we raised £18,000. It was not as well attended as in other years. Families with teenagers did not come along because of the close proximity to exams. Another reason is that it was too soon after the last cycle day which took place in September 2011. The weather was fantastic and as always everyone had a lot of fun. Next year (2013) we are moving back to a September date and will be holding the event on Sunday the 8th. This is a good long time (15 months) after this year’s event and also avoids the exam and holiday dates.
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.
The mother of one young patient with a rare facial tumour arranged to perform a parachute jump with some of her friends and in August a young supporter performed a sponsored parachute jump on her sixteenth birthday. One of our supporters organised two pub quiz nights in December. The partner of one of our patients named us as his Masonic Lodge’s charity of the year for 2012 and we had another successful Golf Day in September.
We had runners in the Reading Half Marathon, the Bath Half Marathon, the Edinburgh marathon, the London to Brighton marathon and the three peaks challenge. Three of our surgeons raised huge amounts of money by cycling in various events, nationally and internationally.
We had three Saving Faces supporters running in an event for the Olympic year. The Bupa London 10,000 is a 10K run which took place on the 2012 Olympic marathon route in May 2012. One of our patient’s has a son who owns an Indian Restaurant where he held a highly popular and successful Popadom Challenge!
A series of four Christmas cards were designed and we successfully sold these online using a Paypal charity account. Our annual carol concert in December was in the church of St Bartholomew the Great. This new venue proved to be extremely popular and so we have booked again for 17th December 2012. This is not a fundraising event but we are very thankful to have received over £7,000 in donations.
Happy New Year to all our supporters. To start off this new year, here is a brief report on what we have achieved so far, with your wonderful help and the exciting plans that we have for the future.
The Facial Surgery Research Foundation or Saving Faces for short was founded in 2000 by Professor Iain Hutchison to fund and lead research to improve the prevention and treatment of facial deformity, facial trauma and facial and mouth cancer. In the last twelve years FSRF has:
What Saving Faces is doing now:
In 2012 FSRF set up the World’s first National Facial and Oral Research Centre (NFORC). The Royal College of Surgeons of England has now designated NFORC as The UK’s Head and Neck Research Centre. The aim is that every patient attending a UK Oral, Maxillofacial (OMF), or Oculoplastic surgeon, or who has cosmetic surgery will have their treatment and its physical, functional and emotional outcome recorded. 1,000,000 UK patients every year will be entered in these studies on facial injury (400,000 patients annually), cancer (10,000 patients annually), deformity (20,000 patients annually), eye conditions (10,000 patients annually) and cosmetic (500,000 patients annually). Researchers around the world can study this data and, for the very first time, they will be able to determine which treatment protocol provides the best result for any disease or injury in the head and neck.
Surgery plays a pivotal role in the treatment of all cancers, facial injury and deformity. There are usually several different surgical treatments for any disease or injury. All of these are relatively successful but obviously not to the same extent. Worldwide nobody has successfully compared these treatments to determine which gives the best outcome in a particular situation. For example, one cancer treatment method may be 75% successful and the other 80% successful. That means that 5 more patients in every 100 will die of their cancer if they have the 75% treatment. The problem is no surgeon or researcher or Professor in the world can put their hand on their heart and say which treatment is best. Even the wealthiest person cannot guarantee getting the best treatment because nobody knows which this is.
In its short life NFORC has generated intense excitement in the Head and Neck surgical community worldwide because research led and conducted on the data collected by NFORC from these 1,000,000 patients yearly will, for the very first time, solve the uncertainty felt by patients and surgeons alike over which treatment provides best results. NFORC will determine best treatment practice and the results of study on its data will apply to all patients worldwide. NFORC is the only organization able to do this in the world because of the partnerships it has set up with national and international surgical organizations and, as a result, American, Asian, Australasian and African surgeons now want to join NFORC.
All this costs money! This is how your amazing support can help.........
We will need guaranteed income of £ 12.5 million for NFORC’s first 5 years to augment FSRF savings and fund all NFORC staff and ensure accurate data collection.
We will need guaranteed income of £ 5 million for NFORC’s first 5 years to fund scientific analysis of this data.
These are essential figures for success: –
TOTALLING £ 17.5 MILLION OVER 5 YEARS.
5 million patients will be studied over this period
SO RESEARCH COSTS EQUATE to £3.50 per patient
We need to appoint and fund 3 University Professors to lead and supervise international research into facial deformity, head and neck cancer and facial trauma prevention and treatment. Each Professor costs £ 5 million to guarantee post permanently
TOTAL: £ 15 million
Up to now Professor Iain Hutchison has been the unpaid Chief Executive of FSRF and Director of NFORC since their inception – effectively donating £600,000 over this period by waiving his salary. Iain Hutchison earned £1.2 million as an NHS surgeon over this 12 year period (£100.000 per annum) so effectively donated what would have been 1/3rd of his income.
According to research published by Cancer Research UK, oral cancer rates are due to rise dramatically over the next two decades. Dental practitioners will be on the front lines, when it comes to early diagnosis. Cancer mortality rates may be dropping overall, but deaths from oral cancer are predicted to increase over the next few decades. Recently released new figures have been reported in the media and highlight this worrying trend.
It makes early detection and referral by dental practitioners more important than ever.Saving Faces runs an electronic diagnostic advice service for dentists.
The following is a report on the service and some comments from one of the dentists who has experience of the service.
“I can’t see a reason why every practice in the UK shouldn’t be signed up”
Volunteers from Saving Faces attended the British Dental Association Conference in Manchester this year to promote its fast-track diagnostic service that promises to dramatically improve the care of patients with suspected mouth cancer.
Three patients, Eileen Kane, Abul Khairat and Roy Hume, who explained the advantages of the diagnostic advice service to patients, and whose stories helped illustrate that there are cases that remain undiagnosed by dentists, also joined them on the stand.
Early diagnosis of mouth cancer increases the chances of survival from 50 per cent to 90 per cent. Primary care clinicians still occasionally miss cancer but more often don’t know the best surgeons to refer to in their locality. This wastes valuable time in starting treatment.
For just £3 a week*, the Saving Faces Diagnostic Advice Service (SFDADS) helps speed up the referral process and ensures referral to the most appropriate surgeons near to where the patient lives.
One dentist, who signed up to the service last summer, is Mark Kent. On the two occasions that he has used the service, he has received a detailed response by the end of the same day.
“I feel that this is a fantastic use of one’s resources,” said Dr Kent.
“It is amazingly reassuring from my point of view and means that I can provide an excellent service to my patients. This makes the cost of it almost irrelevant - I am investing in the care of my patients.
“Receiving an opinion from a specialist so quickly really helps allay patients’ fears. I can’t see a reason why every practice in the UK shouldn’t be signed up. I have used the service twice but I could have used it 100 times and the cost would remain the same.”
The dentist, who splits his time between Middlesex and central London and has been practising since 1983, said he first heard about the diagnostic service when lecturing at the Royal Society of Medicine about a year ago. He heard a presentation by oral and maxillofacial surgeon Prof Iain Hutchison, the founder of Saving Faces, and thought it sounded like a great idea.
Saving Faces Liaison Officer, Dr Louise Lemoine, said: “Dentists simply will never have the experience of looking at as many different lesions of the mouth as oral and maxillofacial (OMF) surgeons. The dentists that we spoke to at the conference were especially impressed by the fact that this service quickly reassures patients with benign disease whilst dealing promptly with those with mouth cancer.”
Participating dentists upload patient details and electronic images of suspect lesions onto a secure system. Their patient is guaranteed to receive an urgent diagnostic service from a consultant oral and maxillofacial surgeon within three days, meaning the dentist can rapidly reassure those with benign disease within days of seeing them. Those with serious disease are immediately referred to surgeons with the appropriate expertise at their nearest hospital.
Every penny raised from subscriptions will be used to fund the world’s first National Facial and Oral Research Study Centre (NFORSC). NFORSC’s work will improve treatment for all patients worldwide. The OMF surgeons receive no payment and are providing this service voluntarily. The donation can be claimed as a practice expense or, if given from a personal account, can be claimed back on tax. The dentist also transfers litigation risk to the OMF surgeon once the referral has been sent so there is never a risk of the dentist being sued by the patient. This is particularly important as a growing number of patients are taking legal action against dentists missing early cancers.
Each referral is evaluable for one hour’s CPD and dentists and their staff can also attend an annual free conference, which also contributes to their CPD requirements. And those signing up receive a Charter Mark Certificate of membership for their waiting room, as well as a poster showing photographs of common lesions and a desktop calendar listing the symptoms of mouth cancer to remind receptionists to give patients with these symptoms an urgent appointment.
* Saving Faces asks for a small subscription of £3 per week per dentist (or £9 per week for practices with three or more partners) payable by annual direct debit.