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.

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Research is definitely a crucial part of a better future but let’s not forget the present

Two big stories breaking in the media today are attracting my attention – a nice change from yesterday’s need to challenge another tiresome TV series title.

First, overnight news comes in of another incredible face transplant operation, this time on a man in the States, Richard Lee Norris, who had been injured 15 years ago in a shooting accident. The photographs released show the brilliance of today’s surgeons but they also remind me of an Italian man I was in hospital with back in the 70s who had to endure many brilliant conventional operations to repair a similar injury.

And almost simultaneously, news of a new major research programme into the causes and impact of cleft lip and palate. To quote the press release of The Cleft Collective: “cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year – but little is known about its causes, with opinion divided on best treatments.

So, in case anyone is in any doubt of my position (and Changing Faces’), let me say it again: medical science has a huge part to play in making a better future for people whose faces look unusual for any reason. Gaining the funding to do this, as The Healing Foundation and the Universities concerned have done for the cleft programme, is vital – congratulations and thanks to them…

Just as important for the future too is that conventional well-proven surgical and medical interventions are available and that includes skin camouflage which Changing Faces is now offering directly or in NHS clinics.

All of these options should be available to patients wherever they live – which is sadly certainly not the case in many many parts of the world. Much more advocacy is needed…

But there is something vital missing in this recipe because even if the transplantation research is successful, it will only be for a very few patients worldwide each year. Thousands, millions, will continue to have to live with their condition – their disfigurement – their birthmark, facial paralysis, their asymmetry, for the rest of their lives. And this is difficult.

All of them should have access to what could be described as ‘disfigurement life-skills training’ – a process by which patients (and their families) are helped to adjust to looking unusual in a world that prizes good looks so much and stigmatises not-such-good looks.

What has shocked me about Richard Norris’s story is the revelation that he spent 15 years living as a recluse. This should never happen to anyone. Sadly we hear every week that it does to far too many people… with a Bell’s Palsy or after cancer surgery or after burns or….

Frustratingly, Mr Norris and many others have not had access to the sort of empowerment that Changing Faces specialises in and advocates for – and is now available in some places. In particular, we know how crucial it is to people of all ages who have unusual looks to develop effective communication skills to manage all sorts of everyday social interactions. Going shopping, using public transport, meeting strangers, being in the playground – all these and many other everyday occurrences which most people take for granted can become nightmare scenarios. Here’s a pointer to the sort of help I have in mind.

Richard Norris’s remarkable surgery will make him less conspicuous in his everyday moments – let’s hope he finds the confidence to thrive in them too in the future.