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.

Fundraising challenges: what they should be (painfully)

I fear the next target of the media’s current interest in charity fundraising may be ‘challenge events’ – you know what I mean: ‘get sponsored to join XYZ charity to run / cycle / walk / drive / negotiate the really tricky route from A to B’. Cynics can easily find fault: ‘nothing more than sight-seeing’, ‘just glorified holidays’…

Changing Faces wants none of it – and I suspect no charity does. But the whole sector sadly can be tarred sadly by a very few cowboys.

On Sunday, I took the train to Garsdale in the Yorkshire Dales to join Christine, one of the Changing Faces team, who has been demonstrating – and has done so brilliantly over the years – that fundraising challenges should be just that – seriously difficult undertakings which deserve people’s financial support and reward.

Christine and I in the driving rain!

Christine and I in the driving rain!

She has put herself through severe annual biking expeditions for the last seven years and has raised more than £15,000 for Changing Faces in the process – never easy trips with Land’s End to John O’Groats in three weeks just one of her many achievements!

This year, she concocted a ‘Hills of the North’ challenge cycling from Scarborough across the country to Ravenglass on the west coast of Cumbria, north to Carlisle, across the border to Kelso and then via Alnwick to Durham and finally via Kirkbymoorside back to Scarborough. 513 miles, she estimated.

And, partly because I have loved cycling since childhood and I’d never been to the Lake District, I volunteered to accompany here on a stage – and what a stage it turned out to be!

It rained most of Sunday afternoon, evening and night but, miraculously, we set off on Monday before 7.30am in the dry, with 65 miles ahead… a do-able, relatively gentle trundle, I imagined.

We went through Sedbergh (after a couple of very tough hills before Garsdale) and rode into Kendal just before 10am – 25 miles done, not a drop of rain, with a lovely downhill once we had managed to beat the brutal one-in-six hill up to the M6 motorway and the horrid two mile uphill drag from the motorway junction. My legs were starting to realise this was not going to be a Sunday afternoon doddle.

As we headed to Windermere, the rain started and became incessant by the time we reached Bowness, full of tourists in their pack-a-macs! And of course, I stood and quietly coo-ed at the Beatrix Potter shop… how much I’ve enjoyed tales of Mr McGregor over the years!

But then it was back in the saddle and up to Ambleside, not the quiet lake-hugging meander we’d imagined but a fast, busy road – and for cyclists, one with the unexpected hazard of loose grit flying up from car tyres. Not pleasant. Ambleside for lunch in the mist and drizzle – not quite what I’d imagined but a welcome chance to stand and stretch legs… and plan the last 25 miles.

Christine is very well-prepared – meticulous, even – in her route-planning as you’d expect after thousands of cycling-miles. And so I was shown the map – and the plan to go over something called Hardknott Pass… with two little > > symbols on the road, a white road and so off-piste… But the map had no contours so we had little warning.

And so we set off… What I didn’t know then was that we would climb 2,211ft and come down 2,385ft and that Google maps predicted 2hr 51 mins for the 22 miles – double what it would take on the flat! Nor did I know that that Hardknott Pass is the steepest road in England at one-in-three for a long, long way.

It was probably the most severe endurance test I have ever faced – worse than the London Marathon by a long way. It was a very long steep hill which, with bags of luggage on our bikes, we had no chance of cycling up (and even without the luggage…). We had to push up and up and up – and it was slippery, steep and interminable. And just to put us in our place, as we approached the top of the Wrynose Pass, a youngster probably inspired by Chris Froome came past us without stopping or walking… ‘more power to you’!

Cloud hindered our view, but not our determination

Cloud hindered our view, but not our determination

Getting over Wrynose, down into the valley and then up to Hardknott, was so very challenging with the rain drizzling and the wind whistling and no visibility. We were pleased to get there!

And then down the other side, such a steep road down, brakes screaming, cars skidding… but at least we were going downhill!

When we got to the bottom, the rain became torrential for the last seven miles – and our map didn’t warn us that there was another very severe one-in-four climb before we could finally freewheel into Ravenglass – and straight into the delightful Ratty Arms… shades of Beatrix Potter and what a refuge it was for two utterly drenched drowned rats!

Hardknott Pass’s history according to Wikipedia is:

The road was originally built by Romans around AD 110 to link the coastal fort and baths at Ravenglass with their garrisons at Ambleside and Kendal. The Romans called this road the Tenth Highway. The road fell into disrepair after the Romans left Britain in the early 5th century, although it remained as an unpaved packhorse route thereafter. The road was originally used entirely for military traffic, but following the Romans’ retreat from Britain was used to transport lead and agricultural goods. By the early Middle Ages, the road was known as the Waingate (“cart road”) or Wainscarth (“cart pass”): there is an 1138 record of a party of monks traversing it in an oxcart.

If you want to find out more, try this page.

So, getting to the point: fundraising challenges should be just that – serious challenges. Sponsorship monies recognise that – and charities benefit.

Christine at Ravenglass station

Christine at Ravenglass station

Christine is raising wonderful funds for Changing Faces. If you’d like to support her – us – please visit her JustGiving page.

Thank you very much!