The Cleft Lip and Palate Association of Ireland is delighted to invite you to our Spring 2021 Information Evening via Zoom. Mr David Orr and Dr Catherine de Blacam, plastic surgeons with CHI Crumlin & St James’s Hospitals, will present …
Nothing about us without us; Patient-reported outcomes and research at the Dublin Cleft Centre.
David will discuss the outcome measures that have traditionally been recorded in cleft surgery and why the team are now trying to emphasise patient reported outcomes.
Catherine will explain specific patient reported outcome measures used in clinc. Catherine will also introduce two research projects that the team would like to involve patients/parents with .
The meeting will open at 7:45 to allow people to connect at leisure. Meeting starts 8pm.
- Introductions & Update from CLAPAI 8:00
- Presentation Mr Orr 8:10
- Presentation Dr de Blacam 8:30
- Questions & Feedback 8:50
Meeting End 9:00
Please send any questions you have in advance to firstname.lastname@example.org
Please click here to register on Eventbrite
How can I get the link to the event?
After you register you will receive an email confirmation that has the Zoom link. Click on the link to join the meeting. The meeting will open at 7:45 to allow people time to connect and chat before hand.
How much does the event cost ?
This is a free event, as always donations greatly appreciated through www.cleft.ie
How can I contact the organizer with any questions?
Text 087 131 9803 or
Check www.cleft.ie for updates
Also check Cleft Lip & Palate Association of Ireland on Facebook
The update for Lockdown 3 is that Primary surgeries – Lip & Palate – are going ahead as they did for previous lockdowns. Bonegraphs had almost caught up from the previous lockdowns. They are on hold but will be scheduled asap after the current lockdown. Adult surgeries are on hold. Face to face clinics are also on hold but a plan is being worked on to ‘catch up’ as soon as possible after lockdown. Cleft staff are still working and are still contactable. Please make contact with them if you have any worries or concerns, From experience we know how much emotional energy goes into appointments and moreso surgeries. The team are working hard to keep us and themselves safe so that we can all of us hit the ground running when we get the okay.
Bottles & Teats have arrived. The first batches are packed and ready to send to maternity hospitals. You can see we are using An Post’s distinctive delivery boxes so that the bottles will be easily identifiable plus the boxes are a good size to store on a busy ward.
At 9:52 on Christmas Eve we still do not have clarity on BREXIT plus COVID has meant no deliveries from UK anyway. If it were not for the generousity of families fundraising for CLAPAI, it would not have been possible for us to secure the bottles. A heartfelt thanks to you. Thank you also to the Transition Year Students of Loreto Abbey Dalkey who did a massive job assembling the bottles and then packing bottles & teats into bags. 258 starter packs created out of 500+ bottles & 1,000+ teats. Go raibh mile maith agaibh.
Keep watching this site for updated bottle arrangements. Hospitals should email email@example.com for delivery information.
Please register now to help things run as smoothly as possible on Thursday
Click to Register on Eventbrite. (The meeting will open at 7:45 to allow people to connect).
Guest Speakers Laura Duggan, Cleft Co-Ordinator Dublin Cleft Centre,
and Dr Triona Sweeney, Director & Founder of Speech at Home
The formal AGM will take place between 8:00 to 8:15
Update from the committee 8:15
- Bottles & BREXIT
- Future Zoom events
- Family Day 2021
- Work Plan 2021
Guest Speakers 8:30
Meeting End 9:00
Click to Register on Eventbrite.
We should have been having our Family Activity Day this Saturday but COVID-19 has stopped us in our tracks.
However, it has not stopped this group of fundraisers that are taking part in activities all over the world to raise funds for our CLAPAI.
Check out the link below or search Go Fund Me for Funbarr fundraiser. You will be amazed by how many people are involved.
Go Fund Me
You will probably be aware by now that, as a result of the COVID-19 situation, we have had to postpone all planned surgery and clinics until we are over the worst of the epidemic. At this stage, we don’t know how long that will be, but it will be much sooner if we all pull together and follow the HSE advice on hand washing, social distancing and reporting symptoms so that we can be tested and isolated early (https://www2.hse.ie/coronavirus/). Meanwhile, here is some information that you will hopefully find reassuring.
Fortunately, the risk of serious illness in children from COVID-19 is very low and much lower than in adults. However, that risk increases with anaesthesia and recovery from surgery so we have postponed all but really urgent surgery. Also, we need to keep as much of our resource as possible free to deal with a surge of COVID-19 cases.
We are confident that a delay of a few months in your child’s surgery is not going to affect the long term outcomes. When we schedule the surgery we leave plenty of leeway for all sorts of delays and when these happen we have plenty of time to catch up. We are keeping a careful and accurate record of all of the postponed surgery and as soon as things get back to normal we will prioritise the children who have been delayed and work hard to catch up as quickly as possible.
Laura and Claire (our cleft co-ordinators) are keeping account of all of the appointments for the postponed clinics. We will reschedule these when the worst of the crisis has passed and as soon as we get the go ahead. Because we have control over organising and scheduling appointments within the cleft team we can be pretty sure that no-one is going to get missed or forgotten about. Again, we will be back on track and working hard to catch up as soon as things settle down.
During this time there will be babies born with clefts and expectant mothers who get an antenatal diagnosis that their baby has a cleft. We will be making individual arrangements to take care of those families.
We will put up a further message on the website as soon as we are in a position to start rescheduling clinics and surgery. You may also find it useful to access the Children’s Health Ireland website at https://www.chi.ie for general information updates.
Until then, if you have any pressing issues or concerns about your child, please feel free to contact Laura or Claire as usual.
Stay safe and well and follow the HSE guidelines.
Dublin Final Report on Parent Led Articulation Therapy 270718
Dr Triona Sweeney and Dr Debbie Sell recently published the Report on Parent Led Therapist Supervised Articulation Therapy (PLAT) for cleft palate speech disorder study (attached).
This two-centre study involving Trinity College Dublin (TCD) and Great Ormond Street Hospital NHS Foundation Trust (GOSH) was carried out between January 2016 and July 2017. The main purpose was to test if parent led intervention is comparable to traditional speech therapy intervention in children with cleft palate speech disorders.
The study was funded by the Cleft Lip and Palate Association of Ireland, the Temple Street Foundation (Ireland) and CLEFT-Bridging the Gap (UK).
CLAPAI’s Family Day, our most anticipated day of the year, is back for 2017. It will be held from 10am – 4pm on Saturday 17 June at Bay Sports Athlone!
We have planned a fun, active day at this great water park facility for the kids. There is always a great social atmosphere for parents to meet and catch up. The facility has a special baby water park for those under 6.
For further details on change of clothes needed, cost of wetsuit hire or to book please contact us by twitter, Facebook or email.
CLAPAI’s most anticipated and fun day of the year is back again for 2016 and will be held from 10am on Saturday 18 June at the Tallaght Leisure Centre!
We are planning a fun, active day for the kids and a social atmosphere for parents to meet with plenty of surprises throughout the day!
You’ll find a booking form attached here which you can send back to us. Family Activity Day 2016 Booking Form & News V1.3
Watch this space for further details of the day.
Parent Led Articulation Therapy (PLAT) is an exciting new Speech & Language Therapy project which aims to find out if empowering parents by training them helps their child overcome their speech problems related to cleft palate.
This two centre study is being run by Dr. Triona Sweeney, Trinity College Dublin and Dr. Debbie Sell, Great Ormond Street Hospital. Parents are encouraged to participate in this study as this will help us find out whether this novel new approach to speech therapy for children http://www.ciprobuyonline.org with cleft palate related speech problems is effective. Four parents who have already attended the training course were extremely positive about the programme. Following the home programme they said that “you feel like you are instrumental – taking some power yourself”, and how they realised that children “need a little bit every day, a weekly appointment is not enough”.
If you want further information about the project contact your cleft unit or Triona by phone at 085 1754614 or email firstname.lastname@example.org.