Changing Faces sticks to its prinicples

Changing Faces has recently submitted its response to the review of cleft lip and palate surgical care in Scotland. It has been criticised in a few blogs and Facebook posts by some parents for supporting the expert Review Group’s recommendation that there should be a single surgical team based at the new Royal Children’s Hospital in Glasgow in the future rather than two teams as now (one in Glasgow, one in Edinburgh).

This has been a challenging process and it is important that I, as Chief Executive of Changing Faces, explain why the charity has taken this position – and it is the organisation’s view reached after much deliberation and not simply the view held by one or two members of staff.

Our full response is here and should be read in full because it explains that the basis for the decision was our over-riding interest in promoting the best future health care, surgical and psycho-social, for all children with clefts and their families across Scotland.

We reached the conclusion we did after a thorough analysis and careful consideration of all the paperwork in the public domain including all the options appraisal and outcomes papers (see this document and also this document). We also listened to the public meetings and to the views of people who’ve contacted us.

As Chief Executive, I took a close interest in such a contentious issue and subjected the position developed by our Scotland Manager and health policy team to challenge and scrutiny. The position we reached was explicit and unanimous.

We want to be clear on three points:

Firstly, we are very aware of the strong views of individuals and families who have been superbly served by the Edinburgh surgical team over the last decade. They are understandably concerned that they may lose the surgical team’s service and all that goes with it. That is not what the single site proposal would produce because the intention is to bring all the three surgeons and their entire surgical teams together. In doing so, all children in Scotland would have access to the best surgery possible.

We also made it clear that we do not think anything else should change: the integrated and psycho-social care that wraps around patients with clefts and their families is absolutely fundamental. “At present there are eight multi-disciplinary team clinics across Scotland. We believe there should be a cast-iron guarantee in the final report which commits to keeping them as they are…. We also would like to see a commitment to regular follow up psychosocial assessment at all levels of patient care.”

Secondly, our health policy team has submitted evidence to many such consultations over the last twenty years including the original Clinical Standards Advisory Group (CSAG)’s review of cleft care back in the early 1990s. In almost all cases, our view after careful assessment of the evidence and arguments has been that children and adults with relatively rare conditions are better served by and obtain better results from larger teams of surgeons working together, learning from and supporting each other, conducting many operations rather than only a few.

Current surgical opinion is also strongly in favour of the concentration of skills and resources for best outcomes, accessibility and patient safety. We accept that view in this case as bringing the chance that the best surgical expertise will be nurtured, shared and developed for the benefit of all children in Scotland. The two Royal Colleges in Scotland have confirmed that they too accept the expert Review Group’s view (see, for example, this from the Royal College of Surgeons of Edinburgh).

Thirdly, Changing Faces is not ‘playing politics’ in any way here but acting dispassionately in the best interests of patients, present and future, across the whole of Scotland.

The charity rejects completely claims that it has been corrupted or that it is in the pocket of the Scottish Government or has been ‘bought’ by the Review Group. None of these accusations have any truth to them whatsoever.

We also strongly refute the suggestion that our Scotland Manager stated at either of the public consultation meetings that he was in favour of the single site proposal or that he said that he had already made up his or Changing Faces’ mind. He listened carefully to the views expressed at those meetings in his capacity both as our Scotland Manager and as a member of the Stakeholder Consultation Group. This also consisted of Gillian McCarthy, CLAPA, and Emma Ashman, Scottish Health Council. All remained neutral throughout the meetings.

Lastly, should the proposals be accepted by the Scottish Government, Changing Faces urges the Edinburgh surgical team to be open to sharing and developing their great expertise within the context of a single site surgical team in the future for the benefit of all children and young people with clefts in Scotland. Whatever the decision, that benefit will be our focus.

Fashion, faces and the future

Last week I had the pleasure of meeting Professor Danka Tamburic, Professor in Cosmetic Science at the London College of Fashion because she is hosting a fascinating Symposium in April, Skin: The ultimate interface, to which I will be contributing with Henrietta Spalding. Our title is ‘Changing Faces: from stigma to face equality’.

The meeting was brought about through the good offices of my old friend, Emeritus Professor Terence Ryan. I met him more than twenty years ago when he was a professor at Oxford University and a highly-respected consultant dermatologist – and there we were discussing skin and the stigma of disfigurement in a fashion college! But no ordinary fashion college – one which has laboratories where students and researchers study the chemistry of skin creams and used to have the Rev Joanna Jepson as its first Rector of Fashion.

Joanna – with whom I have not always agreed! – has written a powerful book called Fashion, Faith and Fig-Leaves: a Memoir, in which she describes her journey in faith and how her rare facial condition affected so much of her adolescence. She became isolated and introverted – and then she risked major maxilla-facial surgery on her chin, teeth and mouth. Which, in her case, was transformational.

Henrietta has also written a brilliant book about her facial paralysis with Professor Jonathan Cole, a neurophysiologist, called The Invisible Smile about life with Moebius Syndrome. It’s a condition which no amount of surgery can change significantly.

It was 45 years on Friday since I looked in the mirror for the first time after fire had severely damaged my face. I knew in that mirror moment that I was a marked man – stigmatised by my scars and disfigurement. Five years of brilliant reconstructive surgery produced my unusual face as it is today. As good as it could get. Contrary to popular belief – myth – that’s it.

Last week too, I read a fascinating article about ‘How long until we can print human faces in the lab?’. The idea that your own stem cells could be used to manufacture a new face if your face is damaged as mine was is still decades away, I suspect, but it might be possible.

Until that happens and such treatment is widely available – and of course, it will not touch many other causes, like facial paralysis – we must tackle the stigma of disfigurement every day in every setting. That’s what Henrietta and I will be saying – and that’s what the campaign for face equality is all about. Join us!