SAVING FACES SAVES AND IMPROVES LIVES

 
$2,450
$7,550
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Jan 17, 2013

Saving Faces. Achievements and Plans

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:

  • Run the world’s largest prevention studies discouraging smoking and binge drinking amongst school pupils.
  • Run a successful international study on the surgical management of early mouth cancer (3 previous attempts in Europe, South America and Asia had failed to study sufficient patients).
  • Conducted 2 National Surveys examining the causes and treatment of Facial Injury in 14,000 UK patients to find better ways of preventing and treating these injuries.
  • Funded laboratory research conducted by PhD students on the genetics of cancer and stem cell behaviour in cancer.
  • Funded Psychology PhD students to determine ways of improving the emotional and functional outcomes of trauma, deformity and cancer patients.
  • Built up a unique bank of tissue and blood collected from cancers linked to the patients’ treatment outcomes. Therefore we can study the tissue knowing whether the cancer is aggressive. This should enable researchers to find markers that will help doctors tailor treatment more accurately to each patient’s needs.
  • Set up a National patient telephone help line where patients who have had treatment (“Buddies”) talk new patients (who have contacted FSRF) through the whole treatment pathway to alleviate their fears.
  • Started courses for medical and dental students on how to do clinical research with patients.
  • Set up an electronic diagnostic service for general doctors and dentists so that cancer patients can be seen more rapidly by the best surgeon for the condition in their local area (SFDADS). A side benefit is that patients who do not have cancer can be reassured more rapidly that they don’t have a serious condition.
  • Set up a tissue engineering group with the intention of growing replacement bone from the patients own stem cells.

 

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.

BUT: -

5 million patients will be studied over this period

SO RESEARCH COSTS EQUATE to £3.50 per patient

Also, ideally

 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. 

Oct 15, 2012

Saving Faces Diagnostic Advice Service Update

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.

Links:

Jul 10, 2012

Psychological aspects of facial disease

Emmy
Emmy

Farah Shiraz and Emmylou Rahtz are PhD students funded by Saving Faces, and here they tell us about the project they’re working on.

About our project
The main goal of our project is to get a better understanding of how patients and their families feel after going through facial surgery, and we’re 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 well-being.  Farah’s project investigates the quality of life of partners as well as patients, and looks into how partners’ emotional states can influence patients’ well-being.
We’re 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.  We are investigating this by asking people and their partners (if they have one) to answer a set of questionnaires for us, and to take part in an interview.  Our hope is that our 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.
 
The journey so far
We’re nine months into our project now and we’ve carried out an audit with Professor Iain Hutchison on everyone who comes to the clinic: it consisted of a questionnaire that asked about patients’ health and well-being, and their experiences of coming to the clinic.  People were really helpful, and we would like to thank everyone who filled it in.  A few people commented that they didn’t think questions about feelings were relevant to them, or that they ‘don’t get emotional’; but it’s important to say that our aim is to get an overview of everyone’s reactions, not just those of one group or another.  We want to find out what makes people react differently.
It’s been a real eye-opener to see how very hard everyone works in the clinics, from the receptionists through to the consultants.  They work long hours and can nearly always spare a smile or an encouraging word, and they still find time to help us out, whether helping us with the audit, introducing us to patients or explaining how something works.   The surgeons are enthusiastic about our research and have been fully supportive in working with us to gain the best results for their patients.  We’re fortunate to be supervised by three people who are eminent in their fields: as well as Professor Hutchison, we also work with Professor Ania Korszun and Professor Kamaldeep Bhui from Barts and the London School of Medicine and Dentistry.  We’re also getting wonderful support from Saving Faces, and as we continue to work on our project, we’re confident we can give something back.
The most enjoyable part for us so far has been attending the clinics where we have met some truly inspirational people amongst the staff and the patients.  This has given us even more passion and motivation to continue with the project.  


What’s next?
Our immediate next step will be to analyze the results from the audit; this will give us an indication of how common emotional problems are in the different clinics.  At the same time we are starting on the next element of the project, when we’ll be recruiting new patients and their partners.
You may have seen us the clinics already, when we’ve been asking people to fill in questionnaires, and if you haven’t seen us yet, you may come across us in the next few years recruiting new patients and their partners, or at a Saving Faces event.   We look forward to meeting you.
Emmy’s background
I originally studied English and earned a BA and MA in English Literature from Durham and King’s College London.  I started out my working life in social research, specializing in learning and education, carrying out research projects mainly for universities and government organizations.  I got more and more interested in how people think and feel, especially when they have to deal with difficult situations like illness and injury.  So I went back to university in the evenings and got another degree – a BSc in Psychology – and now I’m pulling together all my experience and skills to work on this project.
Farah’s background
I graduated in 2005 from Cardiff University with a Psychology degree and also have a Masters in Abnormal and Clinical Psychology.  I have worked clinically as an assistant psychologist which involved working directly with individuals with severe emotional distress.  I have also worked within child and family services offering emotional and practical support to families.  From my clinical experience I learned that when clinicians were supporting families as well as patients it often helped in the patients’ road to recovery.  This sparked my interest to raise awareness about the psychological needs of families as well as patients, as it’s often families – particularly partners – that provide the support and care for patients.
 
 

Farah
Farah
Mar 8, 2012

Report from Saving Faces funded surgical fellow

My name is Jag Dhanda, I am a BAOMS/FSF-Saving Faces Head and Neck Research Fellow at the University of Liverpool.

 

How did you come to do a PhD in oral cancer?

 

I am currently midway through a PhD, having taken time out of my higher surgical training in Oral and Maxillofacial Surgery. This training pathway requires both a medical and a dental degree, with up to eight years of further surgical training. My ambition is to pursue a career in academic head and neck surgical oncology and this is one of the reasons why I have interest in oral cancer research.

Without doubt the paucity of clinical and translational research in head and neck oncology has been a major obstruction to improving outcomes for patients in the past. Despite all the advances in surgical approaches, imaging techniques and chemoradiotherapy, only small overall improvements have been seen in patient survival. This is also evident with only 2.4% of head and neck cancer patients recruited to randomised trials. Comparative research from other malignancies such as haematological and breast have made significant progress by combining the disciplines of translational molecular studies, clinical trials and clinical practice with obvious clinical benefit measured in outcomes.  It is this observation that has been a key motivator for me to undertake research in translational cellular and molecular oncology in head and neck cancer.

 

What is your project about?

 

Oral cancer remains a debilitating disease and can profoundly affect speech and swallowing. The most adverse factor for survival in oral cancer is extracapsular spread (ECS), where the disease spreads from the mouth to lymph nodes in the neck and subsequently spills out from them. ECS is the most biologically aggressive metastatic phenotype in oral cancer. Our research group has previously demonstrated a genetic expression pattern in oral tumours that could be used as a molecular signature to predict the likelihood of individuals having ECS. One of the main aims of my research was to validate this expression profile in biopsy tissue collected from 110 patients with oral cancer, and to provide clinical data to determine how good this molecular signature is at predicting ECS.  The clinical data from patient follow-up after surgery confirmed the devastating consequences of ECS and were consistent with a larger previous study in which only 23% of patients with ECS survived 5 years. Current methods for detecting ECS prior to surgery using MRI scans were shown to be only accurate in detecting the disease in 6.8% of patients.

The second aim of the project was to establish head and neck cancer cell lines from patients with and without ECS. These will be used in future work looking at factors influencing cell migration and invasion. Six cell lines from patients with ECS, one with lymph node metastasis without ECS and two cell lines from patients without metastasis have been created in the laboratory by growing cells from tumour tissue. We will examine their behaviour to see if there any difference between the cells and to try to explain these differences, at the molecular level, and how this may lead to ECS. By identifying the molecular processes that cause ECS we hope to identify potential targets for future therapies.

 

What did you find so far? What are the implications of your work?

 

I have developed three dimensional culture models using these cell lines with different cell types. By comparing the features of these models with the original tumours I was able to demonstrate consistency in the appearance of invading cells in both the original tumour and the models. I have also show that a more aggressive invasive appearance can be induced in a cell type associated with cancer, called keratinocytes, by mixing them with another type called fibroblasts, from patients with non-metastastic disease. 

The next phase of my research is to explore the affects of existing drugs used in the treatment of metastatic head and neck cancer on the models that I have developed. In the future I will investigate the affects of promising new therapies, which could someday have a role to play in the treatment of ECS in head and neck cancer.

 

Together with the insights form the gene expression signature and the culture models I have developed I hope to contribute to the development of biomarkers for ECS. Upon discovery of such biomarkers there are obvious clinical applications, such as selection criteria for randomised trials.  A sensitive form of pre-treatment molecular classification would be invaluable in guiding the application of new therapeutic approaches such as chemotherapy, monoclonal antibodies  or neoadjuvant TPF (taxane, platinum, 5-FU) for which a phase III trial has been recently funded by CRUK in Liverpool.

 

 

Who are the people who help you with your research?

 

My research experience and ambitions have been supported by the kind support given by the Saving Faces Charity and the British Association of Oral and Maxillofacial Surgeons. They have funded the second year of my PhD am I am very grateful for the opportunity that Professor Iain Hutchison has given me. The first year was funded by the Royal College of Surgeons with a Surgical Research Fellowship and further support was also obtained from the Clatterbridge Cancer Research Charity.

 

I have also had guidance and inspiration from my supervisor Mr Richard Shaw and would also like to thank my other supervisors Professor Ross Sibson and Dr Janet Risk. The Oral and Maxillofacial Consultants at Aintree Hospital in Liverpool, Professor James Brown, Professor Simon Rogers and Ms Fazilet Bekiroglu have also kindly supported this research.

Mar 5, 2012

Report from Saving Faces funded PhD student

Working in the lab
Working in the lab

My name is Helena. I am a second year PhD student at the Blizard Institute.

 

How did you come to do a PhD in oral cancer?

 

I got interested in cancer research during my undergraduate degree in Biology at Humboldt University Berlin. I find it fascinating being able to carry out research that might help patients fight cancer and perhaps even save lives.

After completing my undergraduate degree I was very lucky to be offered a PhD studentship investigating oral cancer at Queen Mary University of London under the supervision of Professor Ian Mackenzie and Professor Iain Hutchison.

 

What is your project about?

 

I work on oral squamous cell carcinoma (OSCC, commonly referred to as oral cancer), which is the 6th most common type of cancer worldwide. 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, my 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.

 

What did you find so far? What are the implications of your work?

 

My findings show that oral tumours that have formed lymph node metastases in the neck have a higher proportion of cancer stem cells as compared to tumours which did not metastasise. These findings support the hypothesis that cancer stem cells are implicated in cancer migration, invasion and spread. I have developed a method that allows me to culture and expand cells derived from oral tumours. These so called “cell lines” can be used as models to study features of cancer stem cells present in individual tumours and, in particular, to examine differences between metastatic and non-metastatic tumours.

 

Revealing these differences would help researchers develop drugs that target migration and invasion of cancer cells and ultimately stop cancer from spreading.

Furthermore, the ability to predict whether or not the primary oral tumour has the ability to spread to other sites of the body would help choosing most appropriate treatment for each patient, saving unnecessary treatment and thereby minimising side effects.

 

 

Who are the people who help you with your research?

 

I am lucky to have the opportunity to work with excellent scientists and clinicians. Both of my supervisors Professor Ian Mackenzie and Professor Iain Hutchison ( CEO of Saving Faces) are very well known specialists in their respective fields. I receive a lot of support and valuable advice from my supervisors as well as from my colleagues at the Blizard Institute Dr Adrian Biddle and Luke Gammon. I would also like to acknowledge the pathology support of Professor Kim Piper. Kim samples tumour tissue for me and helps me a lot with interpreting and evaluating the clinical reports. Finally, my work would not be possible without the financial support by Saving Faces for which I am most grateful.

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Organization

Saving Faces

London, Middlesex, United Kingdom
http://www.savingfaces.co.uk/

Project Leader

Louise Lemoine

Liaison Officer
London, United Kingdom

Where is this project located?

Map of SAVING FACES SAVES AND IMPROVES LIVES