Cleft Lip and Palate

Cleft Awareness Week 2018 Summary

Cleft Awareness Week ran from the 5th-13th of May.

Each day during Cleft Awareness Week, I pulled out a post, interview or presentation about cleft lip and palate to share – whatever your background, I hope that you found it interesting, and most importantly, that you learned something about the UK and NZ’s most common facial birth difference that affects 1 in 700 people around the world (that’s an average of 20 babies born with a cleft per week in the UK and 3 per week in NZ).

Here is a collation of all the posts from the last week – you can find all these and more in the cleft section of my website. Thanks to all those who are continually raising awareness and making the world a more inclusive place where society recognises and values the unique contribution that individuals make.

Spending some time with CleftPALS in Queensland, Australia

Brisbane, Australia

Last weekend and earlier this week, I had the privilege of spending some time with the folks at CleftPALS Queensland – the cleft lip and palate support network for people affected by cleft in Queensland, Australia (there are also other branches of CleftPALS in other Australian states).

Thank you very much to all, especially to Belinda, for making me feel so incredibly welcome – it was a real privilege to talk to families, health professionals, as well as other young adults affected by cleft, and I was pleased to be pitched such thoughtful questions. One thing that I have come to realise over the years is that although we all live in different parts of the world, we are generally walking a pretty similar journey, and although the way that cleft lip and palate is managed at a healthcare level varies a bit from country to country, the thoughts, feelings, questions, challenges and triumphs that we have from growing up with, or supporting someone to grow up who is affected by, cleft are much the same.

A personal highlight of the trip for me, was meeting with other people of a similar age to me who also are walking this journey – I feel that we have so much to learn from each other, and I always feel so encouraged meeting other young people willing to share their journeys and experiences – it’s reassuring to have people to share those “me too” moments with as so often it can feel as if our experiences are so unique that nobody else quite understands – thanks very much to Ellie, Briony and Alexandra – it was a pleasure meeting and chatting with you!

I also had the privilege of spending Wednesday morning with Belinda from CleftPALS to share trans-Tasman knowledge and ideas. I found this incredibly useful, and a great way to build rapport between those of us around the world with the same ambition – to improve the lives of those affected by cleft. I’m excited going into my new role in the UK having connections both with Australia and New Zealand and keeping in touch, as it is clear we can learn from each other and save ourselves from reinventing the wheel. Belinda and I discussed some exciting new ideas we have of keeping the international cleft community better connected, so let’s watch this space!

Thanks again to all those from CleftPALS who I had the pleasure of interacting with – it was lovely to meet you, make some Australian friends, and I look forward to keeping the collaboration going!

CleftPALS QLD

Photos used with permission from CleftPALS Queensland.

London’s Calling: CLAPA Adult Services Coordinator Position

I am excited to announce that in December I was offered and have subsequently accepted the position of UK Adult Services Coordinator with the Cleft Lip and Palate Association (CLAPA). This is a 3 year fixed term position based in Central London, but my role will be covering all corners of the UK ensuring that every adult born with a cleft can access support whether they’re residing in Waterloo or Wick. The role is an exciting and varied one researching the unique challenges faced by people with cleft in adulthood, and developing a programme to address those challenges. To the best of our knowledge, this is the first role of its type in the world dedicated to looking at the needs of adults, and I am optimistic that the knowledge gained will extend well beyond the UK. I am confident that my background both as a person born with cleft lip and palate and as a practicing Speech Language Therapist will serve me well in this role.

I think for those who know me well, it is probably not too difficult to see why this role appeals to me, although I’m sure you can appreciate that coming to this decision has not been an easy one. When I was offered the role, I was incredibly torn, particularly because I am incredibly content in my current roles and was not otherwise looking for a change. However, this is an incredible opportunity where I sincerely hope to make a tangible difference, an opportunity that I would not wish to pass up.

Whilst I am delighted to be able to see those of you who live in the UK & Europe much more often, I will be leaving New Zealand with the heaviest (and fullest) of hearts. I love New Zealand, I love the people here – my family, friends and others whom I have met here, the city I live in – over the last 17 and a half years New Zealand has become home (alongside the UK – I consider myself very lucky to have two countries I consider home). I am very fortunate that in this new role, I will have a leave entitlement which will allow me to return to New Zealand each year for Christmas and to soak up some of the January sun. Of course, the world is also an increasingly smaller place, and so I fully expect to be hosting visitors from NZ to London on a regular basis!

I will also be leaving my roles at The TalkLink Trust and Plains FM, two roles and organisations which I love and care a great deal about – in both cases made so incredible by the people I have the privilege of working with everyday – in many cases, people who I now consider to be good friends.

I will start my new role in March. Thank you to those of you here in NZ who have supported me in this journey, I have greatly appreciated your advice and overwhelming sense of support for the decision which I have made.