Information Evening – Monday 29th Mar 2021

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 info@cleft.ie

Please click here to register on Eventbrite

FAQs

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 

Email info@cleft.ie 

Check www.cleft.ie for updates

Also check Cleft Lip & Palate Association of Ireland on Facebook 

UPDATE LOCKDOWN 3

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 & BREXIT Update

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 info@cleft.ie for delivery information. 

Bottles & BREXIT

CLAPAI will be receiving a delivery of 500 bottles on 16th December 2020.  It is planned to make Cleft Bottle Contingency packs available to maternity hospitals. Email info@cleft.ie for further information. 

AGM 2020 – Thurs 10th Dec 2020, 8pm

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
  • Questions

Guest Speakers  8:30

Meeting End 9:00 

Click to Register on Eventbrite

The Funbarr Challenge: 20 June 2020, 70 challenges over 21 countries!

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

A message from the Dublin Cleft Centre Team: COVID-19 Update

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.

Delayed surgery

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.

Delayed clinics

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.

New referrals

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.

CLAPAI Family Day 2019

The Cleft Lip & Palate Association of Ireland is delighted to announce this year we are returning to the wonderful Causey Farm. We have an action packed day planned, from the petting farm to bog jumping.

The Family day is for children and young adults who were born with cleft. It’s for parents, brothers, sisters, babies and grandparents too. Grown ups born with cleft might like to bring their own family to the event, it’s never too late to join in.

It is a time to enjoy activities together, to chat over tea & coffee, to enjoy the annual raffle and above all to meet other families.

Meet at 10:00am and finish around 4:00pm on Saturday June 15 2019 at Causey Farm, Girley, Fordstown, Co. Meath.

Email info@cleft.ie if you have any queries

We look forward to seeing you for another great family day.

For more information or to book click here:
https://www.eventbrite.com/e/cleft-lip-and-palate-association-family-day-2019-registration-61384017248?ref=enivte001&invite=MTY0NDA4NjgvZGFycmFuYnJlbm5hbkBnbWFpbC5jb20vMA%3D%3D%0A&utm_source=eb_email&utm_medium=email&utm_campaign=invitemodernv2&utm_term=eventpage Family Activity Day 2019 Booking Form V2.0

CLAPAI Information Evening 2019

The Cleft Lip and Palate Association of Ireland is delighted to announce our 2019 Information Evening with themes of Speech & Hearing.

The topics titles are:

‘Let’s get Talking’ Early Intervention in Children with Cleft Palate: Roberta Fleming Speech & Language Therapist, Cleft Team, Temple Street Hospital.

Hearing and Cleft Palate: Jen Sim, Clinical Audiologist, Dublin Audiology, 12 Berkely Road, Dublin 7.

Speech at Home: An update on Parent Led Articulation Therapy.

Followed by

Tea & Coffee and Meeting

The Information Evening is an ideal time to meet other families affected by cleft. Come along and enjoy a cup of tea with all of us.

Where: Clayton Hotel Liffey Valley, Fonthill Road, Liffey Valley, D22 X4W6 Dublin 22

When: Wednesday, May 29, 2019 from 7:30 PM to 9:00 PM

For more information and to sign up:
https://www.eventbrite.com/e/cleft-lip-and-palate-association-information-evening-may-2019-registration-61605666206?ref=enivte001&invite=MTY0NjMwNDYvZGFycmFuYnJlbm5hbkBnbWFpbC5jb20vMA%3D%3D%0A&utm_source=eb_email&utm_medium=email&utm_campaign=invitemodernv2&utm_term=eventpage

Report on Parent Led Therapist Supervised Articulation Therapy (PLAT) for cleft palate speech disorder study

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).