Welcome to our first newsletter for 2020.

Chairperson's Report

Covid-19 has certainly been dominating the headlines over the last few months, as it has taken hold around the world. Unfortunately, one of the unavoidable impacts of this has been delays in elective surgeries, including cleft repairs in New Zealand. At Cleft New Zealand Inc, we are wholly supportive of this move as it protects you and your children from exposure to this virus. A slight delay of an operation by a few weeks should have no impact on the long-term outcomes of your child and is a small price to pay to ensure your family’s safety. As a medical support charity looking after vulnerable children, Cleft New Zealand Inc has continued to operate, albeit in a slightly reduced capacity. We can’t wait to buy you all a drink at a coffee group when all this is over.

Another consequence of this for Cleft New Zealand, is that we will be holding our first fully online AGM via Zoom on Tuesday 28th April. This is still our formal AGM and we really want to hear from all of you about where you want to see Cleft New Zealand heading as an organisation and what our priorities should be. This is YOUR organisation and without your input we simply have to guess what we can do to help. Additionally, have a think if you would like to get more involved in Cleft NZ and please consider standing for the board. Nominations must be sent to the Secretary (Allison@cleft.org.nz) by 14 April 2020.

Here at Cleft NZ, we are always working away in the background to improve how we interact with and support cleft affected families around New Zealand. We are all volunteers with children of our own, but we are committed to helping everyone that we can, regardless of where they currently are on their cleft journey. Coffee groups and Christmas parties are the more obvious examples of this, but I can't thank the Cleft NZ board enough for all the behind the scenes work they do every week.

Already this year, there have been some major items that have been either started or progressed, that will have a long lasting impact for many years to come.

Work on updating the Blue Book is still ongoing and we are now in the process of having the new edition medically reviewed, to ensure that it is 100% accurate, before we move on to final layout, design and publishing. The current version of the Blue Book remains a valued and trusted resource, however it will be exciting to see the updated version once it is complete. We did put a message out on Facebook requesting consent for us to use photos of your cleft kids in the new edition of the Blue Book (hard copy only) and thank you to those that have responded. It’s not too late to get your child's photo or personal story included, please email tracy@cleft.org.nz if you would like to help out. The launch of the new Blue Book will coincide with the launch of a Cleft NZ mobile application that is currently in testing. This application will have various sections of the Blue Book information available, in addition to enabling users to subscribe to alerts about events and even connect you directly to your local Cleft Team. We will distribute details of how to install the application nearer to its release date.

The recently published University of Auckland (UoA) study that was mentioned in our April 2019 newsletter, continues to spark some debate in the medical community around New Zealand as to how we can improve the clinical outcomes of Cleft affected children in New Zealand. Recently, the UoA hosted Professor Jonathan Sandy from the University of Bristol, who was involved in the centralisation of cleft services in the UK, to talk about the UK experiences/outcomes post centralisation. Lisa Kennedy and I attended a meeting in Wellington during February, attended by Ministry of Health officials and medical staff from all cleft specialties and cleft centres around the country. The focus of the meeting was to again review the UoA study results and in light of Jonathan Sandy's experiences, discuss the need for change in the New Zealand system. This was a very positive meeting and it was great that Cleft NZ was included from the patient experience point of view. Everyone in attendance agreed on the need for change and working together to improve both the experience and clinical outcomes for cleft in New Zealand. Nothing definitive has been decided at this point and I can't commit to a timeline as to when change will be decided/implemented, however I can assure you that Cleft NZ will advocate strongly on behalf of families around New Zealand to ensure the best outcome is achieved. If you would like to hear more about the potential impact of some form of centralisation, please tune into the upcoming AGM, where we will have a pre-recorded video lecture from Jonathan.

Unfortunately, we have decided to postpone our Cleft Awareness Week, originally scheduled for May, due to a combination of Covid-19 as well as a clash of commitments among the board. We are continuing to plan for an event later in the year and will update you once details have been finalised.

We are hoping to get more coffee groups around the county kick started once the threat of Covid-19 has reduced, but we need your support to do this. We really need coffee group coordinators to run coffee groups in different parts of the country, it really isn't much work at all and it is hugely rewarding. If you want to get involved, please email info@cleft.org.nz. These coffee groups are a great way to get in touch with others facing the same issues / appointments as you and to support each other through some of the challenging times that we all face. If you haven't been to a coffee group yet, I strongly encourage you to go along to one and meet some of the other parents/kids as I have always found it to be really inspiring as to how amazing all our kids are.

Regards,

Andrew Acton-Adams, Chairperson

Breast Pumps and Welcome Packs during Lockdown

Please feel free to send through any Welcome Pack requests as normal, for babies born after 1 November 2019 (we do ask that you don't apply, until after your baby has been born), however we are unable to post out any packs until Lockdown has ended. The request form is on our website. We can continue to issue breast pumps (again, the request form is on our website) but be aware there may be some extra delays around these.

An update from Lisa Kennedy (Board Member, Bay of Plenty)

This quarter has mainly been spent re-writing ‘The Blue Book’ (the new version will also have a new name). In conjunction with the 'Blue Book’, a leaflet has been designed to give some basic information on cleft, to be given out to parents by Ultrasound clinics and LMC midwives, when a baby is diagnosed with a cleft on scan. In a conversation with the Ministry of Health, it was recognised the important role that sonographers and midwives play in providing key information, when a cleft diagnosis is made.

We had big plans to deliver a presentation at the ACLAPA (Australasian Cleft Lip & Palate Conference) in Melbourne. Megan Sanders (Cleft Specialist Nurse) and I had planned to present the outcomes of our “Cleft Advocate’ training days, the importance of training health professionals about cleft care for the new-born. This has now been postponed due to current Covid events.

We have a stand booked for the upcoming Speech & Language Pathology conference in August, but attendance will be determined by the Covid situation nearer the time.

In the meantime, I have sent out monthly emails to our growing list of health professionals interested in sharing the cleft knowledge with their local DHB.

Introduction to the new Cleft Co-ordinators (Hutt)

Natalie Bayley

Hi, my name is Natalie Bayley and I am a registered nurse. I have been working in the Plastics ward and/or the Plastics Outpatient Department for the past six years. Both Pauline Emmens and I are to share the role of Hutt Hospital Cleft Co-ordinator once Susan Reay (whom many of you will know) retires.

Our cleft team provides an extraordinary service and I am delighted to be part of the team. Pauline and I will work together to streamline your cleft journey and ensure you receive essential information.

I will meet many of you when you attend our cleft clinics. My family has left home and I am now a grandmother. I currently live in Lower Hutt with my husband.

Pauline Emmens

Hi, my name is Pauline Emmens and I started as the Cleft Co-ordinator, along with Natalie Bayley, in April 2020 after the retirement of Susan Reay. I have been working in the Plastics Unit at Hutt Hospital for plastic surgeons Craig McKinnon and Sarah Usmar for the past five years.

While Natalie is the nurse you will see when you attend clinic, I will be working in the background to ensure your cleft journey is as smooth as possible. I will be your first port of call for any queries and anything I can’t answer for you, I will aim to find out and answer in a timely manner.

I live in Lower Hutt with my husband and two boys, aged 19 and 16. My background as a Legal Secretary required first-rate administrative and organisational skills which I have carried over to the medical field, and saw my role as a Medical Secretary evolve to include the challenge of coordinating the Cleft Service at Hutt.

Please feel free to contact me on (04) 570-9540 or by email Pauline.emmens@huttvalleydhb.org.nz.

Update from Louise Ayrey (Project Manager, University of Auckland)

We’ve been really busy at The University of Auckland for the first part of the year.

In February we hosted Professor Jonathan Sandy from the University of Bristol. Jonathan has spent many years contributing to cleft research and has been dedicated to improving outcomes for children affected by cleft lip and/or palate. He came to NZ as a Distinguished Visitor of The University of Auckland and presented several lectures as well as attending a meeting at the Ministry of Health to discuss how New Zealand might learn from the UK in terms of cleft treatment, now that our New Zealand Cleft Outcomes study is complete. As you may or may not be aware, the Outcomes study has shown that most of NZ’s clinical outcomes are behind those in the UK and similar to what they were before the UK changed the way services were provided. We have a couple of his lectures recorded which we hope to bring to you soon & he is working on something for the AGM – we would love you to tune in.

Times change quickly and now we are in ‘lockdown’ we are changing with the circumstances. The Gene-Environment (what factors affect cleft lip & palate?) study has had to adapt:

• We are not visiting people in their homes over this period to conduct the questionnaire. We are conducting zoom or skype interviews, which we hope will help to continue interaction and support to families.
• We are not collecting saliva DNA samples at the moment, but we are asking for consent to collect these and we will be in touch at a safe time in the future to complete this part of the data collection.
• Most importantly we want to hear from people who would like to take part. We do not want to lose momentum and we want to be able to continue to offer some connection to those who may want it.
• The koha might help buy some toilet paper too, or something more useful! (although we do not condone hoarding!).

We want you to know, that we are always on the lookout for more research funding to work with cleft affected children of all ages, not just our new or not yet born babies, as this study does. There is plenty more to look at and as exciting as it is to have come this far, we’re excited for future research also.

Some interesting self-isolation suggested reading:

• https://www.clapa.com/news-item/cleft-care-in-the-uk-where-are-we-now/
• Centralisation of Cleft Lip and Palate services in the United Kingdom: The views of Adult “Returners” – Stock, Anwar, Sandy & Rumsey

Email: l.ayrey@auckland.ac.nz with any questions this contribution may raise about any of our research or to see if you meet the criteria to join our current study. We love hearing from you.

Louise Ayrey, Project Manger, Cleft Research, Department of Obstetrics & Gynaecology, The University of Auckland

Ph: 021 318 052; l.ayrey@auckland.ac.nz

Update from Kenny Ardouin

Many of you will remember Kenny from his time at Cleft NZ Inc, and we are delighted to be able to include this contribution from him.

Kia ora,

My name is Kenny Ardouin, and I am an adult who was born with a cleft, and I have studied and worked as a Speech Language Therapist. I spend my time living and working between the UK and New Zealand. For the last couple of years, I have been working for the Cleft Lip and Palate Association (CLAPA), based in London, looking at the long-term impacts of cleft on people in adulthood. Along with my research team in London and Bristol, we have produced four papers looking at Emotional Wellbeing, Physical Health, Treatment Experiences, and Relationships, and the role that cleft experiences play in all of this. We have then used the data to deliver new interventions including the monthly Cleft Talk podcast, as well as a collaboration project with the UK’s National Health Service (NHS) to develop a “Leaver’s Pack”. You can read more about what we’ve been up to in the UK to support adults here .

Over the next couple of years, in addition to finishing off the work that I’ve been involved with in the UK, I’m starting an exciting new project at the University of Canterbury looking at the long term impact of cleft-related speech differences in New Zealand. This will be a study that looks at the impact people feel that their speech has had on their life (e.g. work experiences, relationship experiences, general experiences in public, their mental health etc.) The findings from this study will hopefully be used to inform policy makers (e.g. the Ministry of Health) of any gaps in service provision for adults who are affected by cleft, as well as anything that could be focussed on at an earlier age to avoid difficulties in adulthood. If you’re aged 18 or over, were born with a cleft palate, or cleft lip and palate and have accessed cleft care in New Zealand you’re eligible to participate. To find out more or to register your interest, please email kenny.ardouin@pg.canterbury.ac.nz.