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.
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.
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 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.