Cleft Lip and Palate News Thoughts

2013: A Year in Review from the CEO

What an incredible year 2013 has been. As my first full year in the managerial hotseat it was always bound to be an exciting year, but if you had told me in January that the year was going to be so eventful, I would probably have wondered what planet you came from, but here we are.

January saw me be fortunate enough to meet up with the Chief Executive Officer and the rest of the team at CLAPA (Cleft Lip and Palate Association UK) in London, and it provided the opportunity to establish a strong relationship between the UK and New Zealand in the area of cleft support, with us even exchanging someHerman Friendship Cake on that snowy January day.

February saw the formal arrival of our new Board of Governors and we officially welcomed Jo Lynch, John Hellesoe, Tammy Chau and Rachael Byles to the Cleft New Zealand team. The establishment of this new board is largely responsible for why there have been so many excellent opportunities offered this year, and is led under the stellar stewardship of Louise Ayrey, our Chairperson. I affectionately think of the Board as ‘The Dream Factory’ as they are totally supportive of giving things a go, taking a few risks to see if we can turn ideas and dreams into realities even if we are unsure whether it will pay off in the end or not – as the National Manager, it is a very humbling feeling to have that level of support from your board and to know that you are working with a group of people who share the same aspirations as you do – they say that behind every man is a great woman, and whilst that particular position remains vacant, there is no doubt that there is a great team behind me who I am incredibly grateful to and sincerely enjoy working with.

March typically follows February and 2013 was no exception to this. March saw Louise and I invited to the National Cleft Team meeting at Middlemore Hospital in Auckland, meeting with all the cleft teams from around New Zealand as they discussed best practice, as well as local and international research to ensure that New Zealand is delivering a leading level of cleft lip and palate healthcare regardless of where in New Zealand you may reside. It was fantastic to have the opportunity to see for ourselves the dedication of our teams, and to also have a full appreciation for the challenges that are faced by each region in 2013. I was also fortunate enough to be able to attend the VPI5 conference at Middlemore on the following day also, which was a Cleft Speech-Language Therapists Conference for SLTs from all around Australasia.

April saw the launch of our new quarterly magazine ‘Word of Mouth‘, the newsletter for all those in New Zealand to learn about the latest news in the field of cleft care. Doing the editorial for this has given me a fantastic opportunity to interact with more of our stakeholders and find out a bit more about your lives which has been a really fun experience for me, and something that I look forward to continuing into the future. April also saw Cleft New Zealand become multilingual, which was something that I have always considered very important as it removes the language barrier to accessing our support services. From the launch in April, our services were available in English, French and Samoan, and in 2014 we also plan to add support for Maori speakers and speakers of NZSL (speakers of NZSL can already contact us through the NZ Relay Service).

In May, we had our Annual General Meeting in Auckland at One Tree Hill Kindy. This was our first time in many years of offering the AGM in the daytime and incorporating activities for the whole family. We believe that this was generally very well received and also provided you all with an opportunity to learn about the challenges that a not for profit such as Cleft NZ faces. We also took the opportunity to team up with Deaf Aotearoa and celebrate New Zealand Sign Language Week by offering free NZSL taster classes for our members in Auckland and Christchurch.

June was a month where my own cleft journey reached another station along the journey en route for the final destination of ‘Complete Discharge from All Services’ as I found myself in hospital for surgery for the first time in a number of years.Having my wisdom teeth removed was a good practice run for what is to come next year in my personal journey.

In July, Cleft New Zealand received an invitation to attend a Multicentre Outcomes project for Australasia in Sydney, and I was fortunate enough to be selected to represent families and patients affected by cleft in Australasia which was a huge privilege. This project is really exciting as New Zealand and Australia begin to share data on outcomes of cleft care from a wide variety of fields such as plastic surgery, orthodontics, speech therapy, and perhaps most importantly, quality of life (something which NZ has already started gathering data on). Once this data is available, it will enable cleft care across Australasia to improve, and although we still have a way to go yet, this project is a fantastic start and I really look forward to continuing to hearing about the progress made with this project.

In August and September it may have seen like things were a bit quiet at Cleft NZ HQ, but this could not have been further from the truth – we had three more very exciting projects up our sleeve to complete in 2013 (as well as running the day to day stuff) and so in August and September we had our heads down and were working hard. When you saw us resurface again in October, it was with a bang(er)  (banger = British English for ‘sausage’) as we held our first ever New Zealand Cleft Lip and Palate Awareness Day. Our teams around the country did us proud as they fired up the BBQ selling sausages to the masses on a Saturday morning whilst also handing out free education to the public on the country’s most common condition that is not fixable in a single procedure. Huge thanks to all those who rallied behind this cause, we could not have done it without you.

November was another busy month for us not only because we were gearing up for a very big event in December but also because we had our famous Christmas Party. This year’s event was held at One Tree Hill in Auckland, and credit has to go to Louise and Rachael who did an amazing job in putting on an awesome fun filled day for all the family with a great turnout, with smiles, superheros, ice-creams and sausage sizzles all round (not necessarily in that order)! I also had an exciting November as I had the awesome opportunity to go and have a chinwag with the nursing team on the Paediatric ward at Hutt Hospital, and I must say, they are doing an excellent job, and families are in very capable hands there. I also managed to catch up with Susan Reay, cleft co-ordinator at Hutt Hospital which was a fantastic opportunity to learn more about how the Hutt system works as well as some of the challenges faced by that system and how they are overcoming those resourcing constraints. Overall, I was impressed with Hutt and families should feel confident that they are receiving a good level of care.

Which only leaves December. I’m not going to lie – the 13th-15th of December was probably the most amazing weekend of my life thus far (and I have had some pretty epic weekends in my time). I have been involved with Cleft New Zealand since September 2005. I’ll save you doing all the maths – I was 14 when I first became involved. One of my long held dreams is for Cleft New Zealand to offer a youth camp for young people affected by cleft lip and palate in New Zealand, as in all honesty, this is something that I would have absolutely loved when I was that age, but sadly at that time, there was nothing in this part of the world. Therefore you can imagine my elation in September when the board gave me the green light to go ahead and try to put one together for a weekend in December. Once all the planning was out of the way, and I stepped foot onto that plane on the morning of Friday 13 December, I enjoyed every minute of it. Everyone naturally seemed quite nervous and a little bit shy when the van turned up on Friday morning, but then to see by the Friday evening everyone giving things a go, talking to each other and feeling relaxed at camp was just one of the most amazing things to witness as I realised at that moment that all the planning had been totally worth it. I found it to be a weekend of different emotions, from absolute sheer terror when I was standing on the top of that flying fox platform realising that I had no choice but to go through with it and jump off the top to set the example for the others despite every cell in my body telling me that I was mad to even contemplate jumping off that platform, but that feeling was soon replaced by one of total elation when I realised that I had pushed myself to do something that I never would have done if I felt I could have gotten out of doing it! I felt a sense of pride and achievement in something that I had previously considered to be a total weakness – and I realise that many of the participants experienced the exact same feelings, and also overcame their fears, with that fear being replaced by a sense of high self esteem and confidence in themselves. Seeing everyone exchanging details with every intention of maintaining those friendships was absolutely fantastic. One of my personal highlights was talking to Carmit Bachar from The Pussycat Dolls, and being a little bit cheeky by asking the question ‘What would your advice be to people who are thinking, “When I grow up, I want to be famous, I want to be a star, I want to be in movies”?’ I turned around to see all the staff and kids on camp cringing at my audacity to ask such a question, but Carmit gave the excellent response that life is not all about being famous, and that the only person who stops you from achieving your dreams is you. On the Friday night, we were also joined via Skype by Nicola Stock from the Cleft Collective at the University of Bristol in the UK to talk about The Psychology of Appearance – this was a fascinating talk full of home-truths. Huge thanks to Nicola and Carmit for taking time out of their very busy schedules to join us. I also would like to thank the following people for making this dream into a reality – we could not have done it without you – the entire Cleft NZ board, Susan Frear, Tammy Chau, Alex Wilkins, Aliza Currie, Ellen McKee, Tessa Starr, all the families who came out for the open day on the Saturday, and most importantly, all the participants who came on camp – you are all amazing, and without you there would have been no camp, so thank you so very much for putting faith in us and joining us at the very first camp – it has been truly heartwarming to hear how much you enjoyed yourselves! I hope that camps are something that Cleft New Zealand as an organisation will continue in the future. I could talk forever about camp (as everyone who has caught up with me for a Christmas drink since has come to discover!) but a picture is worth 1000 words, so check out this 180,000 word essay instead here.

Thank you to everyone who has made 2013 an amazing year, and I really look forward to continuing to work with you all in 2014.

I hope that you all have a safe and enjoyable Christmas and New Year!


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