CLDI are organising a Family Fun Day on Saturday September 4th at Tayto Park. If you’re interested in attending, email childrensliverdiseaseireland@gmail.com by Friday August 20th. Check out the poster below for more details. We’d love to see you there!
Questions on Covid-19 vaccines - a message from the GI Liver Team at Crumlin
Similar to returning to school, we guessed that lots of you have questions on Covid-19 vaccines and our children. Below is a message from the GI team.
A message from the GI Liver Team
There is a lot of discussion surrounding the anticipated introduction of a COVID-19 vaccine. The Liver team at CHI wish to reassure all our patients and their families that once the Department of Health and HSE issue vaccine recommendations that are safe and suitable for our paediatric patient cohorts, we will do our best to guide all our patients and families accordingly.
A large number of vaccine trials remain on going and trials in children and young adults have yet to be undertaken/ published. At this moment in time it is too early in the process for our team to offer advice on what will be available to our patients. It is important to note that one vaccine will probably not suit all patients and age groups and that there will be different vaccines used for children and adults. Therefore once the official published data and evidence is available we will be in a better position to issue guidance on which vaccine is safe and / or effective in each of our patient groups. We have excellent paediatric representation at the highest level in the National Immunisation advisory group and children will not be forgotten.
In the interim until a suitable vaccine is available it is important to remember worldwide data and evidence from our European Network of Paediatric colleagues suggests:
· Children seem to be less susceptible to COVID-19 than adults.
· Children who are affected by COVID-19 seem to have a milder course than adults.
· Children with liver disease, who have been infected with COVID-19, have been no worse than children without liver disease. This also applies to those on immunosuppression.
The effect of Influenza in our patients and their families always causes us increased concern at this time of year. We would still advise all our patients to receive the Flu Vaccine.
We hope to welcome the introduction of COVID-19 vaccines in the not too distant future when all the expert advice is available for our patients but until then if there are any further concerns to please contact us through the normal methods.
Info sought from Rare Diseases Ireland - The impact of COVID on the care of children living with rare conditions.
Rare Diseases Ireland are looking for examples of the impact of COVID on the care of children living with rare conditions.
COVID 19 - Returning to School in September 2020
A message from the GI Team for CLDI families. Given current knowledge about COVID-19 disease in children it is now difficult to justify cocooning in most children with underlying conditions. The most recent worldwide data suggests children with underlying medical conditions have recovered from COVID-19 no different to a child with no underlying condition. This would include our cohort of patients that have liver disease.
COVID 19 - Video Updates from Crumlin April 2020
We have been asked to distribute videos that have been produced by the GI and Liver team to address concerns about Covid 19.
Dr Emer Fitzpatrick has done an update video for liver patients and families. We have been asked to distribute it. Dr Seamus Hussey has produced the video for GI patients and families.
It is available on the link below and is currently accessible through the Crumlin webpage for the general public.
https://www.olchc.ie/Children-Family/COVID-19-Message-for-Families-/Advice-for-GI-Patients-COVID-19/
Good luck to everyone in these unusual time
Parent Networking meeting 2020
PARENT NETWORKING MEETING
25TH APRIL 2020 AT 10.30
Due to Covid 19 we are planning on changing the meeting from the Red Cow Hotel to a Zoom meeting.
We look forward to seeing you all there.
British transplant games 2020
Unfortunately the British transplant games due to be held in the summer have been postponed. Below is the statement from the organisation.
COVID-19 Statement - 23rd March
The Trustees of Transplant Sport and MLS held a further teleconference yesterday evening to discuss the 2020 Westfield Health British Transplant Games in Coventry.
Our main concern is the safety of all our participants, their families and friends and to the numerous volunteers and employees who support the Transplant Games many of whom work within the NHS.
In light of the evolving Coronavirus pandemic the Department of Health issued specific guidance to high risk groups including organ transplant, stem cell transplant recipients, and dialysis patients over the weekend. The advice is to stay at home, self-isolate and practice social distancing until at least late June 2020. We believe these measures may be extended beyond this time frame and recognise that it is clear that this pandemic will last for several months.
We have therefore taken the decision to postpone the British Transplant Games this year as well as all Transplant Sport events until the end of September 2020. This decision has the full support of all stakeholders and partners of the Games.
The decision on the timing of any future TS events will depend upon the impact and duration of the Coronavirus Pandemic.
This has been a very difficult decision to take and we are currently working with our partners to minimise any impact of the postponement of the Games. Please bear with us for the next few days whilst we work through the implications of this decision and we will update you through the TS and BTG websites and Facebook Pages, but also individually to those who have registered for BTG and to all Team Managers.
We ask all the TS Family to follow the Department of Health guidance mentioned earlier and stay safe and well.
Cleo and Sarah Duke appear in the Independent
Sarah Duke has an extra special reason for enjoying Mother's Day today.She remains forever grateful she was able to save the life of her youngest child by giving her part of her liver.Her daughter Cleo (4) is "doing fabulous" since undergoing transplant surgery in London. "I just feel so lucky that I was a suitable donor for Cleo," said the mother-of-three.Sarah is a clinical scientist who works in the genetics laboratory at Crumlin Children's Hospital in Dublin.Her husband Phil will cook a celebration meal for Sarah at their home in Lucan, Co Dublin, today and they have been looking forward to spending the day with their three children Nina (8), Joni (7) and Cleo."We remain extra vigilant for Cleo at present, as her immune system will remain suppressed for the rest of her life," Sarah told the Sunday Independent.Four weeks after Cleo was born, her public health nurse Carole Leslie suspected that Cleo's jaundice and pale stools could be the signs of liver disease and encouraged Sarah to bring forward a planned health check.Three weeks later, Cleo was diagnosed with Biliary Atresia and soon afterwards was placed on a waiting list for liver transplant surgery.She received wonderful care from a whole team of staff headed by Consultant Dr Annemarie Broderick at Crumlin Children's Hospital. They were supported by the hospital's liver team and by Children's Liver Disease Ireland.But months went by without a single call regarding a potential donor.Cleo's health continued to deteriorate as her jaundice worsened, her tummy swelled, and she was itchy, constantly throwing up and losing weight. It was believed Cleo would not survive to her second birthday without a transplant.
https://www.independent.ie/irish-news/news/a-mothers-wonderful-gift-of-life-to-little-cleo-39064670.html
Karen and Freddie were on the Late Late
https://www.youtube.com/watch?v=zAGxeIv9GOo
Yellow Alert-CLDI plan for Earlier Diagnosis of Biliary Atresia in Infants Executive Summary
Executive Summary and Recommendations
CLDI want to work to promote early identification of Biliary Atresia in infants. This report is to identify where issues are occurring and what we can do to decrease the chances of them happening in the future. We also want to be able to prioritize actions based on the best use of our resources and the potential impact on the issue.
Jaundice occurs in 50% of infants. Typically it clears after 2/3 weeks. If it goes on longer than that it can indicate liver disease. The Kasai procedure can be conducted on infants with Biliary Atresia - the disease most likely to lead to liver transplant. The earlier this procedure is done the more likely that it will be successful. After 7 weeks old the success rate of the Kasai declines rapidly. This makes it critical to be able to spot liver disease in infants early and to distinguish between normal jaundice and jaundice that could be indicative of liver disease.
CLDI have carried out a number of projects so far in this area. We have distributed yellow alert packs to 20% of all PHNs, emailed them about CLDFs yellow alert app, put articles on nursing websites and worked with the team in Crumlin to have CNSs providing training to student and existing PHNs in UCD.
Based on examples from parents, we have pinpointed a number of areas where we believe that improvements can be made.
We are prioritising 3 projects.
Stool Chart Project
Developing a CPD module to be put onto the ICGP website and distributed widely to medical professionals
Targeting PHNs through the University courses for students and practising PHNs.
There are 7 other proposed projects. These will be reviewed as we make progress on the 3 priorities depending on the resource available.
Tayto Park June 2019
TAYTO PARK JUNE 2019
We had a great day in Tayto Park. The weather remained good in spite of dire forecasts. It was wonderful to see parents and children hanging out together-sharing experiences and fun.
Emily launched a navy ship
Little Emily Byrne was guest of honour when the Naval service's newest vessel, the LÉ George Bernard Shaw, was officially named and commissioned.
The event came just months after she received a liver transplant from a "living donor" who is in the service and a family friend.
https://www.independent.ie/irish-news/guest-of-honour-emily-gets-liver-transplant-from-heroic-donor-38067332.html
RUN FOR LIFE 2019
Run For a Life 2019
Saturday May 25th 2019 2.00pm
Corkagh Park, Dublin 22 (Use St. John’s Grove entrance)
REGISTRATION is OPEN
You can register on the day from 12am – 1.30pm. Get there early as the Run WILL start at 2pm!
Results for our 2018 event are available HERE
Photos for our 2018 event are available HERE
Last year’s Run for a Life was another successful and enjoyable day! A big THANK YOU to everyone who supported us in 2018 and we hope to see you at this year’s event in on May 25th!
Welcome to the website for our annual Run For a Life. This is the eleventh year of the event and we are delighted to be back in Corkagh Park again! The event has developed a loyal following over the years and it has become a strong platform for the promotion of organ donor awareness and raising funds for the Irish Kidney Association as well as a great day out for all the family.
The parkland nature of the measured 2.5km circuit we use will make it very picturesque and should make for a good experience for runners, joggers and walkers alike. Hopefully we can have good weather this year!
As a result of ongoing feedback, we will again be offering a choice of 2.5km, 5km or 10km events. A combination of an accurately measured course and chip timing will mean that it will be a good event for regular runners to record a good time over the popular distances of 5km and 10km. Having the 2.5km options makes the day accessible to all ages and abilities thus making it very family friendly.
As in past years, our renowned soup and sandwiches will of course be available to all finishers!
I look forward to seeing you on the day.
Mark Murphy
Chief Executive
Irish Kidney Association
British Transplant Games 2019 Newport
We have set up an Irish team for the British Transplant Games. It is all about fun. If your child has had any type of transplant they are eligible. It is a great trip for the whole family.
There is some funding for the games.
If you are interested please contact us and we will fill you in.
childrensliverdiseaseireland@gmail.com
Newport welcomes you to the 42nd edition of the Westfield Health British Transplant Games which will be held across the city from Thursday 25th July to Sunday 28th July.
https://www.britishtransplantgames.co.uk/aboutnewport2019
Tayto Park
Children’s Liver Disease Ireland
Family Fun Day
Sunday June 9th, 2019
at
Tayto Park, Ashbourne, Co. Meath
If you are interested in joining us, please send:
• Names and ages of children attending
• Names of adults attending
to childrensliverdiseaseireland@gmail.com
before Friday May 17th
Once names/numbers are confirmed, final details will be circulated to families.
WE HOPE YOU CAN JOIN US!
Parent Networking Meeting 2019
Parent Networking Meeting 13th April 2019
Red Cow Hotel
SUMMARY
We had a very productive meeting this year. There were many issues raised which are of interest to families of children who attend Crumlin.
Here is a summary of the actions as a result of the meeting. Should you wish to contact us regarding any of these please email childrensliverdiseaseireland@gmail.com
1. The Parent Networking Meeting 2020 will take place in April.
2. We will be going to Tayto Park this year in June and doing the Pantomime if finances allow.
3. If anyone wants to be a member of a committee representing parents in the New Hospital contact us.
4. We will be contacting the hospital about a number of issues that were raised including the issue of the CNS maternity leave staffing.
5. We have a new website and would like everyone to review it. If there are any inaccuracies contact Sylvia.
6. Having had some success on the Yellow Alert campaign we have decided to increase our efforts at education particularly to medical professional. We will form a group to do this project. All welcome.
7. Organ Donor Awareness is going well but we would like to have a contact in Dublin. We are looking for a volunteer.
8. Aoife is now the Irish Team Manager for the British Transplant Games. She has gotten funding to bring families of children with transplants to the games. We are looking for families who are interested.
9. We are setting up a Crumlin alumni for children who are moving to Vincents. We are looking for families whose children are now attending Vincents, to be friends on Facebook to address the concerns of those going over.
Parent Networking Meeting 13th April 2019
Red Cow Hotel
We started with an update from the actions from the last meeting. These led to discussions on many areas.
CONNECTING PEOPLE
Days Out We had a very successful day in Tayto Park and the Pantomime in DCU. There was great attendance. Both children and parents got a lot from both events.
Following a discussion, we decided that Tayto Park continues to be a good option as it is good for children of a variety of ages. In addition, there is a good option for being able to meet for lunch for families to meet up. We also decided that June was a good month for this outing.
The trip to the Pantomime is an extra event. We will review our finances in October/November to decided whether we can afford to do it this year.
Ciara has made many calls to try to get a day out with Baldonnel. Unfortunately, they are short staffed and as a result they cannot host us. They hope to be able to do it in the future.
Annamarie organizes the Parent Networking Meeting every year. We will have it again in April 2020.
ACTION: 1. Book Tayto Park Ciara
2. In October/November review finances to decide whether to do the Pantomime. Ciara
3. Contact Baldonnel once or twice a year. Ciara
4. Book Parent Networking Meeting for April 2020.Annamarie
Contacts for newly diagnosed At the last meeting parents said that it would have been nice to be able to speak to someone whose child had liver disease when they were newly diagnosed. Parents volunteered to be those contacts which we gave to the CNS nurses.
In discussion it was raised that the new CNS may not be aware of this.
ACTION: 1. Contact CNS and remind them of this list.
CRUMLIN
Liver Unit At the last meeting it had been brought up that the liver unit rooms were not always given to liver kids. We approached the ward manager who said that they do all they can to put liver kids into those rooms and that everyone is aware that they are liver rooms.
ACTION: 1. Keep in contact with the ward manager once or twice per year. Sylvia/Karen
New Hospital. The New Hospital is now under construction. Previously we had been members of a committee representing patients and their families. We are now looking to see whether anyone wants to be a member of this committee. Contact Aoife of you are interested.
ACTION: 1. See whether anyone wants to be a member of this committee. All
Ancillary Services At the last meeting parents realized that some of the ancillary services are managed in different ways by different departments. We wanted to speak to the hospital to see whether we could get all services using best practice across the hospital. We did not get support on this. However we still fell that it is important so we will start again.
ACTION: 1. Contact CEO and services manager to see whether this can be done. Sylvia/Karen
Response time on emails. This was brought up last year. We approached the CNSs. The service seems to have improved as the nurses now deal with the emails in a more timely manner.
Collage and Plaque The parents room collage was completed and put up in the parent’s room of St Josephs ward. We decided not to put a plaque as the collage had the group details on it.
Staffing. We fought to get 2.08 CNS resource allocated to the unit. Dearbhla and Ger have now moved on and have been replace by Amy and Laura. Amy has gone on maternity leave. The hospital has allocated 0.4 CNS resource to replace her. They have employed a nurse Sarah to do these hours. This gives us a total of 1.4 CNS resource. We do not think that this is acceptable.
Dr Broderick is on leave for 2 months. Her hours are being covered by the other consultants. Some parents are under the impression that Dr Bourke or Dr Hussey are also going on extended leave.
ACTION: 1. Contact Crumlin to express our concerns about the CNS decrease in hours. Sylvia/Karen
2. Contact the consultants to see whether there is any unusual leave being taken. Sylvia/Karen
Hickman line. At the last meeting an issue was raised for the parents using the Hickman line. The cancer ward has a protocol that our parents would love to use. It means that they could significantly decrease the amount of time that they have to spend in hospital. We approached the department last year. They said that they were hoping to introduce something in our unit when things settled with the CNS. Since then Ger left.
ACTION: 1. Approach Dr Bourke about this issue and see whether we can use the same protocol as St Johns. Sylvia/Karen
St Josephs Ward Concerns were discussed about the services on the ward. Before the ward was opened there was training given to the nursing staff. We wonder whether this needs to be repeated.
ACTION: 1. Approach the team with the concerns and decide on the best route forward. Sylvia/Karen
Infection Control Issues were raised about how those in isolation and their parents are treated.
ACTION: 1. Approach the team and the ward to discuss the systems for parents in isolation. Sylvia/Karen
KINGS
Update Website The information about Kings was looked at by Irene in Kings and others. Some changes were made. Some members had used Airbnb when in the UK.
ACTION: 1. Review the website. See what needs to be updated and let Sylvia know. All
2. Get information about Airbnb and put on the site. Karen, Sylvia
Care Pack Last year it was suggested that it would be good for people in Kings if we had a care pack for them including mug Duvet etc. It was looked into. However, there was an issue with storage and managing them so unfortunately we could not do it.
Brexit The services we get from Kings are based on an EU directive. We have been assured that things are not going to change with the services to Kings whenever Brexit happens.
ADMIN
Website At the last meeting our website was down. We had repeated problems. So we decided to switch platforms to Squarespace. In addition, we decided to have it as an information only site. This would mean that we do not have any GDPR issues. It also makes the site more secure. We now need someone to maintain it. We also want to keep it up to date.
ACTION: 1. Find someone to take over the website. Sylvia
2. Review website and tell CLDI what needs to be updated. All
Facebook Emma Lyons has been doing regular posts on facebook.
Accounts Aoife gave a rundown on what we use money for in the organization and what we have in the accounts. We will publish the accounts shortly.
ACTION: 1. Accounts to be completed and published. Aoife/Greg
CMRF CMRF gave us €10k for our hardship fund. For us to receive this money we had a review of our procedures by CMRF and got a very good comments after it. We have been told that we are very professional.
Aeronautic Transport Group Aoife has been a member on this group since it was set up following Maedhbh Mc Givern did not get to London for her transplant in 2011. She is stepping down. Rory and Paddy agreed to take it on. Rory has knowledge of the historic issues and Paddy is working with the system as it is now.
ORGAN DONOR AWARENESS
This year members got involved in the Run for Life campaign, IKAs Christmas Gift campaign and Organ Donor Awareness week which went very well. It was thought that it might be a good idea to have someone close to Dublin who would like to get involved in the role of coordinator for this area. Michelle is willing to continue with the role.
ACTION: 1. Look for someone to get involved with Michelle who lives closer to Dublin. Contact Sylvia if you are interested.
Run for Life This event was held last year and was attended by Ciara as an Organ Donor awareness event. It was a lovely event and is being held again this year. It was recommended as a great event for families to attend.
ACTION 1. Advertise the event with a meeting place for CLDI members. Sylvia, Ciara
YELLOW ALERT
At the last meeting we were pushing to get lectures in UCD on spotting liver disease in infants to PHNS while they were training. The Yellow Alert pack was given to students in May 2018. In November Amy gave a lecture to the student PHN class. We provided the yellow alert packs. Both Amy and Laura gave a lecture to qualified PHNs who facilitate students. The plan is that the Laura will do the next student lecture. This has been very successful.
It is disappointing but late diagnosis on liver disease is still an issue. The success rates for treatment disimproves the later the liver issue is diagnosed. There was lots of discussion on this and how we can overcome the issues that led to children’s late diagnosis. We decided that we have to work on educating people about liver disease in infants.
We would like to follow the model that we have used for student PHNs in UCD. We’d like to get the yellow alert to all student PHN courses, to educate GPs and to try to get to nurses and doctors in the hospital Emergency Departments.
We would like to be able to get a leaflet or pooh coloou chart put into the pack that every mother gets on discharge from hospital.
There was some talk about getting a jaundice test in the heal prick test. There is some research being done in this area.
ACTION: 1. Have a group to work on yellow alert. Anyone who is interested contact Sylvia. All
2. Conduct an education project for PHNs, GPs, ED nurses and doctors. Group
3. Find out how to get a leaflet into mothers’ packs and try to get a pook chart put in. Group
4. Find out more about the research being done. Group
5. Find out more about awareness raising from CLDF. Group
6. Speak to the Crumlin team about their view on how to go about the education. Sylvia
OTHER ITEMS FROM 2018/2019
Transplant games. Aoife has become the coordinator for the Irish team for the British transplant games. She had attended the games last year and all of her family got a lot from it. However, she felt that it missed having an Irish team.
She has gotten funding from CMRF and Temple Street for families who wish to go. The only requirement is that they have a child who has had a transplant. It is open to any child who has had any type of transplant. The funding covers travel, accommodation, entry fees etc. We need to get families to attend.
ACTION: 1. Anyone interested please contact Aoife. All
2. Advertise for people to attend. Aoife/Sylvia
3. Contact other organizations that deal with transplanted kids and offer it to them. Aoife
Tackers. Sylvia reported on Maeve’s experience in tackers. They highly recommend the experience for children from 12-15.
AOB
Crumlin Alumni Moving to Vincents when children turn 16 is a big thing. Since there are many previous members of CLDI who have already done this we can reach out to those who have gone before to get their experience.
ACTION: 1. Contact previous members who might be interested in sharing their experience with those who are moving over. Sylvia
2. Set up a facebook page for them. Sylvia
Living Donor There has been a change in the allowances for living donors.
ACTION: 1. Find out what the change is. Publisize it and put it on the website. Sylvia
Emergency Bags These are given to people who arrive in Crumlin or who have to go to the UK in an emergency. There are 5 available in the hospital. They do not seem to be given out in the same way that they were previously.Sylvia is looking for someone to take over doing the bags when they next are required.
ACTION 1. Speak to the CNS about the bags and when we would like them to be used. Sylvia/Karen
2. Tell St Josephs ward about the emergency bags. Sylvia/Karen
3. Handover the list/photo of what’s in the emergency bags.Sylvia, Karen, Annamarie,
Annmarie
