Celebrating the springboard donation to Changing Faces

Greville and Lisa Mitchell

Greville and Lisa Mitchell

Twenty-five years ago this week, on Friday 25th October 1991, I received the very first donation to Changing Faces – and it was a full nine months before the charity was officially ‘launched’ and was therefore of even more significance.

So I was delighted last week to be invited to have coffee with Greville and Lisa Mitchell in their lovely house overlooking Perelle Bay in Guernsey – and to thank them yet again for their immense generosity. Their donation was the trigger, it gave me the confidence – and they didn’t stop there either!

Greville Mitchell is a very well-respected local philanthropist in Guernsey – he’d put up the initial funding for the island’s hospice. I didn’t know him but managed to get an introduction and met him one afternoon in early October 1991.

I explained what I was thinking of doing – creating a charity to fill the void in psycho-social, confidence-building care for people with disfigurements from any cause, to advocate that such care should be a routine of health care after burns, cleft lip and palate, facial cancer or paralysis or skin conditions, and to challenge the prevailing and pervasively negative public attitudes around disfigurement.

A big agenda, I admitted, but it need to be tackled. I asked him if he would advise me on whether he thought it a viable and worthwhile idea. He agreed to review my ‘business plan’ (I shuddered at its paucity) and said he would get back to me.

A few days later, I had just been out spreading slurry on a local field fully-clad in protective oil skins and stopped at the end of our farm track to rescue the post from the mail box. I climbed back into the tractor cab and opened one of the letters, the writing of which I didn’t recognise. It was from Greville: “thank you for your book and your plan… I think it is a very good and exciting idea and needs doing… and here’s £5,000 to get it going… and I’ll go on supporting you if you do get it up and running.”

And so the Andrew Mitchell Christian Charitable Trust became our very first donor – and Greville has been good to his word like the great Christian gentlemen he is. He has given 25 gifts to a total value of £146,000.

But that very first donation was the most important. From a complete outsider, he recognised the need I was talking about and was prepared to put money behind it. That is how charities like Changing Faces start and that is what keeps us going forward:

Because people believe as Greville did – and does – that it “needs doing”.

What is more, I could write to other prospective donors and say “I had already received substantial support”!

Greville and Lisa: you spring-boarded so much – mega thanks!

Kathy Lacy – a woman of huge empathy who inspired thousands

It was with great sadness that I heard of Kathy Lacy’s death last Thursday after she’d been through a series of very difficult health problems. I’d seen her a fortnight ago and she was clearly in agony so it was a mercy.

I first met Kathy (pictured above) at Victoria Station in July 1992 three months after Changing Faces was launched. She had been recommended by a mutual friend who knew I was looking for someone to help me deal with all the enquiries I was receiving and run the workshops we were inventing too.

Kathy was working in health education in London at that time and had, according to my friend, completely mastered her condition – a severe form of Nf1, Neurofibromatosis, which meant that she had what she sometimes referred to as ‘lumps and bumps’ all over her face and body.

Victoria Station was a good choice of venue as it turned out because I could see instantly as I approached her in the coffee shop that she was completely unphased by the reactions of those around her. She greeted me with all the warmth and interest that I soon came to realise were her hallmarks. Despite all the intrusions and bad times she had been through, she had evolved the most wonderful way of seeing the very best in people – and of showing that very directly.

It didn’t take me more than a few minutes to realise that I could work with her – and indeed that I wanted her on the team – as my very first freelancer – and she was soon to become a full-time member of staff, a rock for nearly a decade in what we offered to people and families who contacted us for help. They were looking for someone who understood what they were going through – after the birth of their child, or with their skin condition or facial palsy, or after facial cancer surgery, burns or a car accident. Kathy understood instinctively and intuitively.

Her philosophy of life was a simple one summed up in one of her favourite epithets – and she had lots of them! “The past is gone, the future is yet to come, the present is truly a gift to be enjoyed”… and she passed that on to everyone by osmosis. And her osmosis was extraordinary. People have told me that Kathy could convey her empathy down the phone line like no-one else. Her person-centred approach – she trained with Metanoia and NLP – enabled her to reach people even those in the most serious unhappiness and isolation.

In the first few years, we ran lots of workshops together – and then Kathy ran many on her own. They were always stimulating events bringing people with disfigurements of all kinds together and enabling them, after two intense days, to live life more fully and confidently. People regularly wrote (no email in those days) afterwards thanking her for her kindness and empowerment. She was great one for saying to clients that you have to have tenacity – she had it in spades. Another of her mottos was “there’s no such thing as failure, only feedback” and anyone who had a setback – or experienced the kind of intrusions that she knew only too well – was just unable to resist her certainty! Learn from your experience and move on.

In her nine years at Changing Faces before she retired, Kathy touched the lives of many people – and left a lasting legacy in the Client Service we now have which she was so rightly proud to have pioneered.

Kathy, rest in peace, you earned it.

The birth of modern plastic surgery and the face equality campaign

The centenary of the cataclysmic Great War is happening all around us but is liable to be drowned out by last week’s European events. Let me call for a moment of reflection.

We say on Armistice Day every November ‘we will remember them’ and we should this week. Lest we forget. On Friday 1st July, I will remember the sacrifices of the men and women of the Great War, 1914-18, who gave their lives or were injured in that dreadful event.

One hundred years ago on 1st July, the Battle of the Somme began. There were 60,000 casualties that first day – yes, 60,000 – and by the time the Battle was called off in November, the allies had gained six miles of territory with 420,000 British casualties, 200,000 French and 500,000 Germans. One eye witness account captures the horror on this site.

The reason why this matters to me is that 1st July 1916 is held by those in the dressing stations and hospitals behind the lines on both sides as being the birth day of modern facial and plastic surgery. Never before had so many men been seen with severe facial injuries – and thanks to methods that had evolved in the previous two years of war, never had so many men survived. Governments on both sides were forced to bring together the most ingenious surgeons of the day to tackle the challenge.

On the allied side in the early days of the War, the British New Zealander ENT surgeon, Harold Gillies, worked with Charles Auguste Valadier, a French-American dentist and the French surgeon, Hippolyte Morrestin, to invent new techniques for closing facial wounds and treating the loss of skin and tissue. But as soon as the Somme’s casualty toll became obvious, Gillies was given a whole hospital – Queen Mary’s in Sidcup – to find ways to help the thousands of facially-injured soldiers arriving back in Britain.

Queen Mary's Hospital Sidcup, with Harold Gillies on the right

Queen Mary’s Hospital Sidcup, with Harold Gillies on the right

He assembled an exemplary multi-disciplinary and international team – perhaps better, ‘force’ – and every one of us who have received facial surgery since then owe Gillies and that team a huge vote of gratitude. Gillies’ seminal textbook, Plastic Surgery of the Face, published in 1920 remains a masterpiece.

And it gets even more personal for me because in the Second World War, Gillies again was at the forefront of treating the many casualties and this time created a ‘force’ at Rooksdown House in Basingstoke. My surgeon, Jim Evans, was trained by Gillies there – and when the war ended, the whole team moved, with their archives, to Queen Mary’s Hospital, Roehampton, where I was treated in 1970-75. My last operation in 1974 was a Gillies pedicle, the longest ever attempted according to Jim Evans, from my back to my chin. I wear it with pride.

And it was in the basement of that hospital, next to the medical photographer’s studio which I recall very well, that the archives were found in 1993 and thanks to the brilliant work of Andrew Bamji, have been created into a beautiful archive.

I will also celebrate the work of Henry Tonks, the war artist in Gillies’ work. I count myself privileged to have seen the originals in the vaults of the Royal College of Surgeons in England in connection with a film about Simon Weston’s portrait going on display at the National Portrait Gallery.

But perhaps most of all, my sombre reflection will be about the lives of the men who, after the horrors of the Somme, then went through the pain and agony of those early surgical experiments and then had the strength to try to get back into civvy street. They are the real pioneers, the first generation working for face equality in all walks of life, for respect and fair treatment.

Lest we forget. RIP.

PS: For interest: many books have tried to capture this human experience like Marc Dugain’s The Officer’s Ward (also a fine film), Pat Barker’s Life Class trilogy, The Crimson Portrait by Jody Shields and Louisa Young’s My Dear, I Wanted To Tell You.

Events in Paris and London today

My heart and prayers go out to everyone in France who are trying to come to terms with last night’s ghastly events in Paris. We at Changing Faces are ready to do anything we can to help those injured and their families and we are with all people who stand for freedom and democracy.

Today, I will be in north London marking 40 years of an amazing service which has its roots in the aftermath of the fight against tyranny and barbarism in the Second World War, and so want to assert strongly that from these atrocities can come seeds of good.

The Skin Camouflage Service was created by the British Red Cross at the request of the Department of Health in 1975. In 1975, a nationwide survey of dermatologists highlighted the psychological and social effect of disfiguring skin conditions. The survey found that, while few skin problems are life-threatening, visible conditions – such as vitiligo, rosacea and scarring – could cause great distress and adversely affect almost every aspect of a person’s life.

Joyce Allsworth was appointed to develop the training – and Joyce was a pioneer in skin camouflage because she had been working with companies like Veil, Covermark, Max Factor and Elizabeth Arden in the 1950s and 60s, and they had been inspired, at least in part it is likely, by Sir Archibald McIndoe, the great plastic surgeon at Queen Victoria Hospital, East Grinstead. The patients he treated in the wake of the Battle of Britain and subsequent warfare came to be known as McIndoe’s Guinea Pigs.

Today the Skin Camouflage Service is an integral part of what Changing Faces offers to help people with any kind of disfigurement – from birthmarks, skin conditions, burns or scarring from accidents and violence – to gain self-confidence and self-esteem.

 

Around 5,000 people a year are referred to the service by dermatologists, GPs, plastic surgeons and others – and are advised by our highly-skilled Skin Camouflage Practitioners about the best cream to use – from 150 options on the NHS prescription list – according to their skin colour, type etc and how to apply it. They can then get a GP to prescribe the product – and the feedback we get is that this can be life-changing for many people. You can find out a lot more on our website.

My hope is that this little bit of history can light a tiny ember of hope into the gloom that last night’s events will inevitably produce.

Revealing the Lion Faced Man

James is away … Henrietta Spalding, Head of Advocacy at Changing Faces, writes a guest blog

After a recent chance meeting with the mezzo opera singer, Alison Wells, last weekend I found myself going along to see a unique opera first at the Tête à Tête Opera Festival at Kings Place in London. It was a performance of an intriguing new work about Stefan Bibrowski, a man born in 1890 with a rare medical condition called hypertrichosis which resulted in his whole body being covered in long hair, giving him the appearance of a lion.

Stefan Bibrowski

Stefan Bibrowski

His life experience, as far as we know, was that he was treated as an outcast, rejected by his own family, being exhibited from an early age and becoming known as Lionel, the Lion-Faced Man and had spent many years working as a ‘side show performer’ including with Barnum and Bailey in the United States. I was intrigued: a historical experience of disfigurement that was to be explored through opera, and not only that but had been specifically composed to challenge the audience on how they would view someone who was unusual when they weren’t able to look away.

As a life-long opera fan, I had some degree of trepidation. Contemporary opera would not necessarily be my first choice and on arrival we were given viewfinder goggles to focus our visual gaze on the portrait of Stefan throughout and to prevent us from peeping out at what the director did not want us to see – namely the singer and the musicians. This was somewhat alternative compared to my previous experiences of the wonderful casts, staging and costumes of Puccini and Verdi et al and their fabulous music.

The performance was to last just 21 minutes.. It carefully presented the life of Stefan from his birth to his death, both what is known factually – remarkably little – and the many myths, aspersions and hearsay that have been promulgated around his short life from his father being mauled by a lion which his mother supposedly witnessed whilst pregnant, to his being created by ‘the devil’.

Through a powerful libretto and a dynamic range of voices that the singer as a solo act captured, underpinned by a tremendous score (and not nearly as scarily atonal as I had feared) accompanied by a piano trio, the performance sought to dispel many of those myths simply revealing the very few known biographical facts of Stephan’s life – his date and place of birth. And all the time as we were absorbed in the performance, our attention was focused on his picture and our thoughts. Throughout I was wondering how other members of the audience perhaps less familiar with unusual appearances were responding and what was going through their minds – what was the journey that they were going on in terms of how they saw him, and actually who he was? Did they land up like me realising that in actual fact very little of this gentleman was known at all.

But it seemed to me at least that this experience from over hundred years ago resonates with so many of the pressures that many Changing Faces clients face today in our looks-obsessed world – the assumptions and speculation that people make so often about people with distinctive appearances whether it be around their life prospects or their personal lives and the measures that people often take to fit in and be accepted. Stefan himself with none of the modern treatment options available to him went to the extreme lengths of actually burning off some of his hair.

It was an incredibly powerful depiction and I congratulate CN Lester and Hel Gurney, the composer / director and librettist respectively and Alison too for a brilliantly thought provoking spectacle, and I very much hope that there will be further opportunities to see this work.

From isolated recluse to respected citizen – a tale of two people

I was so delighted to be invited to comment last week on the extraordinary meeting of Richard Norris, a face transplant patient, with his donor’s sister, on the BBC and a number of other news outlets. (You can watch me on the Victoria Derbyshire Show on BBC Two from 31m 35s here.)

Here was a man who had lived ten (or even 15) years in isolation, ridiculed and terrified of other people’s reactions to his face after a shooting accident left him with a severe disfigurement.

Richard’s ‘new’ face does indeed make him less noticeable in everyday life. He will probably now be able to walk down the street without so much staring – although his media notoriety may attract a different sort of attention. But as soon as he is into a social interaction, he will, as ever, have to manage other people’s reaction to his disfigurement. I hope he now has access to the sort of help to enable him to develop the communication skills to do that successfully.

Three years ago, I wrote of the very significant transformation that the face transplant operation had achieved for Richard Norris. And I bemoaned the fact that he had not had access to the sort of empowerment that Changing Faces specialises in and advocates for – our self-help guides alone can be very helpful.

Earlier this week, I was in Sheffield hearing a very positive report of the first few months of our Changing Faces clinic in primary care which was launched in February (see this BMJ report).

Sadly, during my journey to Sheffield, I became aware of some of the words used in the media in reviews of Bradley Cooper’s performance in The Elephant Man, which has recently opened in the West End. I have yet to see this production and am much looking forward – it will take quite something to better Fourth Monkey’s production which I saw in February.

Joseph Merrick was born in 1862 in Leicester and although he only lived 27 years, became something of a celebrity in Victorian England. His condition was not properly diagnosed during his life but general consensus today is that he had Proteus Syndrome. Merrick offered himself to a music hall and a freak show in order to earn an income and so escape the workhouse – a social entrepreneur of his day, you could say – and although paraded and ridiculed mercilessly in public, he stood his ground proudly.

His life was gradually transformed by the humanity of Dr Frederick Treves who enabled him to become a respected citizen free from the abuse and ridicule that had so debased him. No longer were words like ‘horrifically disfigured’, ‘ugly’, ‘grotesque’ and ‘monster’ used to his face or about him. Those who met him in Victorian England came to revere him and respect his rights. He was one of the first champions for ‘face equality’.

It beggars belief that over 150 years later, some sections of our media believe it is acceptable to continue to peddle prejudice using the very same words that had belittled and tarnished Joseph’s life – and Richard’s and many other people’s whose faces are unusual.

Earlier this week we asked for the tasteless prejudice in one online review by a widely-read and supposedly popular pundit to be removed and were shocked to receive this in reply:

quentin

I am not sure that Mr Letts will see how offensive he was, perhaps unthinkingly, and apologise. Changing Faces’ press office sent its media guidelines to all theatre critics and reviewers several weeks ago, to avoid such language being used. Clearly Mr Letts didn’t read them – or didn’t care.

But I am sure that it has given a further boost to my determination to extend our campaign for ‘face equality’ to eliminate the injustices faced people with disfigurements in Britain and around the world. Our media guidelines need to be embedded in every media outlet.

I am looking for some serious sponsorship for our next campaign so if you think you and/or your company would like to help, please get in touch. Thank you.

Elephant Man: A review

You have one week more to get to see Fourth Monkey’s superb production of Elephant Man at the atmospheric little theatre behind the Brockley Jack pub – and atmospheric is no exaggeration. From the moment the doors open and you search for a seat immersed by the fog of late Victorian London, you will be gripped by the tightness of the script, the minimalist but symbolic scenery and the brilliance of the acting.

As the play’s writer, Steve Green, acknowledges in his programme notes, much has been written about Joseph Merrick and the main protagonists in his story – Frederick Treves, the surgeon, and Tom Norman, the freak-show owner. But this is a powerful exposition of the moral tangle they were all caught up in – of which Merrick was for so long a victim.

The characterisation and ingenious sculpting and dressing of Merrick are particularly distinctive – and Daniel Chrisostomou is outstanding as he suffers the burden of the part, turning from the outcast into a loveable human being. And the symbolism of the last scene was not lost on me as he throws off his shackles, the imprisonment of his disfigurement.

A must-see – and especially as I gather the Broadway version opening in London in May has a different take on the story.

Elephant Man is at the Brockley Jack until 21st February. Further dates in Canterbury, Wolverhampton, Hereford, Dorchester and Bridport. More info…

Faces of the First World War

This weekend, people up and down the country will be marking Remembrance Sunday and remembering the hundreds of thousands of people who died in conflict.

For me, it’s also an opportunity to reflect on the enormous advances in plastic and reconstructive surgery that resulted from the work of pioneering surgeons a hundred years ago – achievements currently being celebrated in a moving exhibition at the Hunterian Museum.

I’ve recorded this short film, explaining the advances and how they continue to be important even today.