There was a broad raging discussion which covered peoples experience of CLDI and issues that they were dealing with at present.
Yellow Alert Campaign
Newsletter November 2015
Newsletter November 2015
IRISH ISSUES New Ward for Crumlin
The new 5 bed ward has been built at the end of St Josephs ward which is an orthopedic ward.
There was a delay with the opening of the new ward. Patients are being admitted to the new rooms while the original ward is being renovated. It will all be officially opened in December or January.
The hospital asked us to help with the parents room in 2 ways.
They looked for suggestions on what was required for a parents room. Members contacted us with suggestions.
They also wanted to see whether people wish to donate money for some items that will be used in the parents room. We asked anyone who wished to donate to send in donations. Thanks to everyone for your contributions. We raised €1000. The hospital are delighted.
Yellow Alert Campaign
We want every district nurse to have information on infant jaundice. The team in Crumlin is working on getting this to happen. This is in negotiation and is taking a long time.
We decided that we needed to try to other methods of getting information out is a less structured way.
We contacted the Director of Public Health Nursing. She sent an email to all of the assistant directors who passed it on to all of the local district nurses. They then requested the jaundice packs. To date we have distributed 175 packs directly to public health nurses who requested them. Since there are 1200 working public health nurses that means that the pack is in the hands of 15% of all district nurses. We consider this a result.
CLDF launched a jaundice app aimed at medical professionals in October. This gives all the information required to spot infant jaundice which could be liver disease.
Here is the link.
http://www.childliverdisease.org/Information/Baby-jaundice/Yellow-Alert-App
We sent information on the app to Crumlin hospital. We developed a press release and distributed it to organisations in the medical profession to be published in their magazines and websites. We published information to members through Facebook.
The app has a facility for the medical professionals to request a copy of the brochure which will be delivered by CLDF.
Crumlin will continue to try to get the stool chart as part of every public health nurses pack.
Therefore we now consider the project complete from CLDIs point of view.
Training
We have agreed to fund some training for the team.
Meal and Car Park vouchers
The team requested us to get set up and fund meal and car park vouchers for families who are long term stay patients.
A limited number meal vouchers have been put in place. These seem to be working well.
We are still in negotiations with the car park people to see whether we can set up a similar system for a limited number of car park vouchers.
Hepatobiliary surgery
Currently Kasai procedures are performed in London. Dr. Corbally, who used to do them, has now officially left Crumlin. The hospital has put in a training program for an existing surgeon under the supervision of the surgeons from London. We have asked when this surgery is likely to be conducted in Ireland again and we are waiting for a response.
App
CLDF are developing an app which will be used to give to children when they are starting to take over taking their own medication. It is expected to be available in February/March
SOCIAL AND ORGAN DONOR AWARENESS
Website
We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.
The Facebook page has been used to publicize the ongoing issues.
Organ Donor Awareness
There were a number of articles in the national press. We are looking for anyone who would be happy to put their stories when the press asks us for a family to talk to.
When the press approaches us they usually ask us for information on how many children had transplants in the previous year. Due to a change in policy these enquiries now have to go to the press office in Crumlin and not the team. This delay can cause problems and we have had articles issued without numbers recently. We have applied to the press office to try to get this information every year. We would hope to publish it on the web site.
This has still not happened though we keep chasing the press office.
Family Fun Day
We had a great family fun day in Tayto Park on Saturday 3rd October. Over 100 people attended.
It was a cold day but it was bright and dry. The children and their parents had a great day. We met for lunch in the middle of the day. It was great to see the families together with the children looking the picture of health.
SAVE THE DATE
We are planning to have a meeting on -----------. This will be the 5th year anniversary of the setting up of CLDI. This will be a meeting to review what we have done and to decide what we want to do for the next 5years. Please reserve the date as we would like to have a big turnout.
UK ISSUES
Treatment Abroad Scheme (“TAS”) and Payment of Flights to UK.
We know that lots of families are having trouble with getting repayment of flights from TAS. We wrote to Aer Lingus and Ryanair looking for help with the price and help with the flights for families. No response yet from either airline.
We also met with the Director of Nursing in Crumlin and we are going to try to meet the Minister of Health to get a fund set up so families can have their flights booked by someone in the HSE and would have the taxis, trains etc. to and from the airports repaid.
The more specific examples we have of issues that have arisen the stronger our case in looking for change. If you have had an experience of TAS please let us know. All information will be completely confidential. Contact childrensliverdiseaseireland@gmail.com
Travel Bursary
The fund is operating well and helping many families.
Emergency Bags
There are families who are told in Crumlin at short notice that they have to go to London. The bag holds some essentials that are needed. Another 10 emergency bags were given to Crumlin.
If anyone has received one of them feedback would be great. Are there any suggestions about what else could go into them? Was it useful?
Ambulance Service
The ambulance service reports their Priority 1 transfers of patients to the UK. They have made all journeys in the time given by the hospital in London in the last 12 months (and longer). If anyone has any feedback (good or bad) for emergency transfers to and from the UK, please let us know and we will pass it on to the ambulance service.
FINANCE AND ADMINISTRATION
Charity Number
We have now received the charity number. It is CHY21244. We are hoping to set up a mycharity account for anyone who wishes to raise money.
Accounts
The annual accounts are available on the website
Barettstown Open Day
Family Fun Day 2015 Tayto Park
Sanef
Bake Sale For Parents Room On New Liver Ward
Sean, Anne And Tara In The Limerick Leader
Newsletter June 2015
Newsletter JUNE 2015 IRISH ISSUES
New Ward for Crumlin
The new 5 bed ward will be built at the end of St Josephs ward which is an orthopedic ward. Patients are being admitted to the existing St Joseph’s ward.
The ward is expected to be ready in early July. The playroom will then be started. The entire job will be completed and opened in September.
The hospital have asked us to see whether people wish to donate money for some items that will be used to finish off the ward. We will get a final list and will circulate it.
Yellow Alert Campaign
We want every district nurse to have information on infant jaundice. The team in Crumlin is working on getting this to happen.
We have decided that we need to try to other methods of getting information out. We are in contact with a number of organizations to try to get information on line.
CLDF are developing a jaundice app aimed at medical professionals. This will give all the information required for infant jaundice. It should be available in September.
When it is available we will publicize it to the medical community in Ireland.
Publicity is an area that we are new to. If anyone has any expertise in this area please contact Sylvia on childrensliverdiseaseireland@gmail.com as we need some advice on how to proceed.
Training
We have agreed to fund some training for the team.
Meal and Car Park vouchers
We were approached by the team to see whether we could get involved in helping families who are long stay in Crumlin with meal and car park expenses. We are in negotiations with the members of Crumlin to see what we can set up.
Hepatobiliary surgery
Currently Kasai procedures are performed in London. Dr. Corbally, who used to do them, has now officially left Crumlin. The hospital has put in a training program for an existing surgeon under the supervision of the surgeons from London. We have asked when this surgery is likely to be conducted in Ireland again and we are waiting for a response.
App
Recently we were investigating whether to set up an app. This was due to be a medicine reminder and also a way to help us with children who are transitioning to taking meds themselves.
On investigation there are many medicine reminder apps. However they are not much more than alarms.
There are companies who are developing behavior modification apps which are based around gaming. This sounds very interesting. One of them is based in Ireland. And is called transplant buddies. The app however is some way off. They are developing it for adults first. We will keep in touch with them.
CLDF the UK support agency, are developing an app for the transition phase. This is probably a year away. They are happy for us to take this app when it is available. This is the most promising option.
So the final decision is that we will not develop our own app at this point.
We cannot recommend any medicine reminder apps. There are so many and none are completely what we need.
We will keep in touch with transplant buddies and CLDF offering whatever assistance they need to get their apps developed.
SOCIAL AND ORGAN DONOR AWARENESS
Website
We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.
The Facebook page has been used to publicize the ongoing issues.
Organ Donor Awareness
There were a number of articles in the national press. We are looking for anyone who would be happy to put their stories when the press asks us for a family to talk to.
When the press approaches us they usually ask us for information on how many children had transplants in the previous year. Due to a change in policy these enquiries now have to go to the press office in Crumlin and not the team. This delay can cause problems and we have had articles issued without numbers recently. We have applied to the press office to try to get this information every year. We would hope to publish it on the web site.
Family Fun Day
We are having a family fun day in Tayto Park on Saturday 3rd October. We have had great interest in this day out. We need to have numbers for the booking. If you wish to come but have not yet let us know please email childrensliverdiseaseireland@gmail.com.
UK ISSUES
Treatment Abroad Scheme (“TAS”) and Payment of Flights to UK.
We know that lots of families are having trouble with getting repayment of flights from TAS. We wrote to Aer Lingus and Ryanair looking for help with the price and help with the flights for families. No response yet from either airline.
We also met with the Director of Nursing in Crumlin and we are going to try to meet the Minister of Health to get a fund set up so families can have their flights booked by someone in the HSE and would have the taxis, trains etc. to and from the airports repaid.
The more specific examples we have of issues that have arisen the stronger our case in looking for change. If you have had an experience of TAS please let us know. All information will be completely confidential. Contact childrensliverdiseaseireland@gmail.com
Travel Bursary
The fund is operating well and helping many families.
Emergency Bags
There are families who are told in Crumlin at short notice that they have to go to London. The bag holds some essentials that are needed. Another 10 emergency bags were given to Crumlin.
If anyone has received one of them feedback would be great. Are there any suggestions about what else could go into them? Was it useful?
Ambulance Service
The ambulance service reports their Priority 1 transfers of patients to the UK. They have made all journeys in the time given by the hospital in London in the last 12 months (and longer). If anyone has any feedback (good or bad) for emergency transfers to and from the UK, please let us know and we will pass it on to the ambulance service.
FINANCE AND ADMINISTRATION
Charity Number
We have now received the charity number. It is CHY21244. We are hoping to set up a mycharity account for anyone who wishes to raise money.
Accounts
The annual accounts are available on the website.
Martin O’ Malley Runs A Marathon For CLDI
AGM april 2015
AGM Aoife O’ Gormon
AGM was conducted focusing on main issues of:
Travel for families, costs etc.
Endoscopy waiting times
New dedicated liver ward in Crumlin hospital
Aoife asked for anyone who is interested in helping to contact us.
CLDI wants ideas for our next family day. We would hope that the day would be an event to include the children.
A handout was distributed listing the activities that CLDI have been involved in this year and the accounts for 2013.
Everyone is asked to let us know if there are areas that they would like us to get involved in or input that they would like to make to the areas that we are already involved in
WHAT HAS CLDI BEEN DOING SINCE THE LAST AGM IN APRIL 2014.
IRISH ISSUES
New ward for Crumlin In December 2013 an anonymous donor agreed to fund a new five bed GI ward. We are following progress of the project that is due to be completed in December 2014.
District Nurse Campaign Previously we funded the purchase of leaflets from CLDF that were developed to give to medical professionals to diagnose and deal with liver disease. Broad agreement was reached with the HSE that it would be a good idea to give leaflets to all district nurses. Implementation has been slow. Work is still on going. In the meantime the leaflets are being sent to medics involved in the care of newly diagnosed patients.
Transitioning from Crumlin Hospital to St. Vincent’s Hospital. We have agreed that a photo frame with CLDI logo on it would be a good gift to give to children who are leaving Crumlin. We hope to have the frames soon.
Medical card
Following a number of children losing their discretionary medical cards, we met with the Office of the Ombudsman for children. They declined to help us unless we got each family to make an individual complaint.
We then approached the advocacy service of the HSE. But actions following the OurChildrensHealth campaign meant that we did not pursue our complaint to the HSE advocacy service.
We were in touch with OurChildrensHealth campaign that is putting pressure on the government to get medical cards for all children with serious conditions. Many of our members signed their petition.
The pressure on the government worked and it was announced that medical cards would be given back to those who had them revoked since 2011.
An expert group was set up by the Government to decide which groups should get automatic medical cards. CLDI made a submission to this group in June 2014 and many members made personnel submissions.
We will continue to monitor events around this issue and get involved as we can.
Training We funded 2 nurses to go to European Liver Conference in London
Crumlin Hospital We raised practical issues with the administration of the hospital which led to revision of their website to address the issues. There are new links on the CLDI website to address the issues.
Endoscopy Cuts Changes in the theatre arrangements in Crumlin have led to a decrease in the theatre time for liver patients. We have written to the hospital to express our concerns and plan to follow up on this letter.
SOCIAL AND ORGAN DONOR AWARENESS
Website
We have appealed for input to update the website. We really need information from people who have been to London recently, are newly diagnosed and from anyone who has a condition not covered by the stories so far. Please consider writing a short article about whatever you think would be of use to people who are going to be in your position in the future.
We have to shutdown the website briefly to do some maintenance. It is now up and running again.
Facebook The facebook page is very popular and has been very successful in passing information around.
CLDF Webcasts At the AGM it was suggested that newly diagnosed patients might like to speak to others who had been through it. We approached CLDF in England who did a couch web cast weekly for anyone interested. Unfortunately they had to close this service as it was not being used
Organ Donor Awareness
We attended a sports day for the Irish Transplant Games. They are trying to get more children involved.
The IKA offered us places on a skiing trip www.tackers.org. Unfortunately no one was in a position to go this year. The skiing trip is a heavily subsidized annual weeklong event for children aged between 8 and 15. Anyone interested in their child attending in 2015 or in the future please get in touch.
Deidre Faul of the Irish Transplant team put together a 2014 calendar for Organ Donor Awareness. We got involved in it and 6 of our children appeared in the photos. She donated €1270 from the proceeds to CLDI.
We asked for volunteers for Organ Donor Awareness week. Ellie Cole was seen in lots of photos in the press.
Baldonnel Day Out We had a great day at Baldonnel in November. About 80 people attended. The Aer Corps made it a fantastic day.
The Santy Express A number of our children were lucky enough to be chosen for the Santy Express in December. They had a wonderful day. This is an annual event organized by Nursing Administration in Crumlin Hospital. If you are interested in your child attending we can pass on your information to Nursing Administration.
Medical Day 27th September 2014 In conjunction with the team we have organized a medical day where expert medical personnel talk about issues that arise repeatedly in clinic. CLDI are funding the day.
AGM The AGM will take place as part of the medical day.
Next Years Event. We are looking for ideas for next years day out following on from Baldonnel and the Medical Day. We would like next year’s day out to include children so all suggestions are welcome.
UK ISSUES
Treatment Abroad Scheme (TAS) and Payment of flights to London
A very frustrating year.
After much work in summer 2013, we were told that the TAS were taking our idea and setting up an account with the airlines. This would mean parents and children could fly to and from the UK, without paying. The flight cost would go on the TAS account and the bill would be sent to the TAS. To the HSE this is the same cost as the payment that they make under the current reimbursement system.
However over a year later, there has been little to no progress on this and we are very frustrated. We are planning a new strategy for 2015 and welcome anyone’s views or ideas.
There have been significant delays in the reimbursement of flights from TAS. In May 2014 we made a complaint to HSE patient advocacy. TAS explained that the delays were due to staff shortages that we were assured had been resolved following our complaint. However we have recently heard that it is happening again. If anyone has experienced delays can they please let us know and we will follow up with TAS and HSE advocacy.
But some positives
Emergency Visas Some non-EU national parents were having trouble getting visas to go to the UK with their sick child. We got involved with the GI team and the GI team now has a contact at the British embassy for such situations.
National Aeromedic Group We continue to attend this meeting to ensure that the transport system is running smoothly. Since 2013, all liver transplant referrals have been transported within the required time.
Ambulance service We were in discussions with the ambulance services regarding potential cuts to the services that they supply for emergency transfers. We have been given assurances that our services will not be cut.
Travel Bursary The system has been operating very well with a bursary being given to any family who has to travel to the UK.
Emergency Bags These continue to be given out to parents who need them when they are going to the UK.
Questionnaire A questionnaire was given to parents who had received the travel bursary and emergency bags. The comments were overwhelmingly positive and we are grateful to those who send them. These replies help us to ensure the scheme continues to work as well as possible.
FINANCE AND ADMINISTRATION
Money We have received a number of generous donations in 2013 and also so far in 2014.
Charity Number We continue to try to get the charity number. We hope we are on the last leg.
Accounts Income and Expenditure Account and Balance Sheet for year ended 2013 are on the link below.
Fantastic donation for CLDI Jan 2015
Ciara Devitt ran the Dublin City Marathon in October. She raised sponsorship for CLDI.
As a result CLDI was put in as the charity that her employer Rathangan Stud award €5000 to every year. There was tough competitions for the award. In light of her magnificent effort it was awarded to us.
Fantastic.
We want to thank Ciara and Rathangan Stud for their amazing donation.
Newsletter June 2014
June 2014 Newsletter
IRISH ISSUES
New Ward for Crumlin
The new 5 bed ward will be built at the end of St Josephs ward which is an orthopedic ward. Patients are being admitted to the existing St Joseph’s ward.
The team have been involved in running study days for the staff of St Joseph's. There are some nurses there who have worked on GI and Liver before. All of the staff are very enthusiastic about the training and the changes on the ward.
The building project is progressing.
Medical Information Day
We are funding a medical information day on Saturday, September 27th in the Red Cow Hotel. There will be speakers who will address issues related to living with liver disease. The team has ideas about what is to be included. We are going to ask for input from members as well so that we have specific issues addressed. More details will follow.
District Nurse Campaign
Slow progress is being made in getting the CLDF leaflets into the packs that district nurses have. Ultimately we want every district to have the CLDF pack that they can use when assessing infants.
Transitioning from Crumlin Hospital to St. Vincents Hospital.
When children move from Crumlin to Vincents it is a big day for the child, the family and the GI team. We have agreed with the team that we would get a photo frame with our logo. This will be presented to the child by the team on their last visit. If the family wants a photo with the team they can take one on the day. We hope to have the frames soon.
Medical card
We have followed the progress of the medical card issue.
Many Members signed up to the petition on OurChildrensHealth which was a campaign to put pressure on the government to get medical cards for all children who have serious illnesses or congenital conditions. We have kept in touch with this campaign and will help them if they need further help.
In June the HSE have advertised for people to make submissions. These will be used to help an expert group to decide who would benefit most from medical cards. We are making a group submission a submission in an attempt to get our children automatic medical cards based on their conditions. We believe that it is most important that our children have access to medicine, vaccines, GPs and Hospital care whenever they need it. Please make a submission on behalf of your child before June 30th.
Drugs Payment Scheme
See medical cards above.
Training
The two clinical nurses went to go to the European Liver Conference in London. There is no funding available in the hospital. It is critical that this ongoing training is conducted so we funded the trip.
SOCIAL AND ORGAN DONOR AWARENESS
Website
We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.
The Facebook page has been used to publicize the ongoing issues.
Organ Donor Awareness
We have had a quiet few months in the area of organ donor awareness.
AGM
We will have a short AGM on the medical day in September.
UK ISSUES
Treatment Abroad Scheme (“TAS”) and Payment of Flights to UK
In April we discovered that the TAS had stopped reimbursing flight costs of families travelling to and from the UK. We lodged a compliant with the HSE and since May the TAS has started reimbursing flights again. If anyone is having trouble getting one child and one adult flight costs reimbursed please let us know.
We have continued to ask the HSE to improve their payment of flights to the UK.
Travel Bursary
The fund is operating well and helping many families.
A questionnaire was sent to the families who had received the travel bursary and the emergency kits. We have received some overwhelmingly positive responses. We will put a sample of them together and put them on the web site.
Ambulance Service
The ambulance service continues to coordinate emergency transport to the UK. They welcome all feedback. We will pass on any negative or positive feedback to the ambulance service.
FINANCE AND ADMINISTRATION
Charity Number
The application for charity number has been submitted. It will take some months for this to come in.
Accounts
The 2014 accounts are being prepared. If anyone would like to see them before the AGM please email CLDI. They will be presented at the AGM.
FINALLY
We were informed of the death of one of our adult members Angela Leddy. She died suddenly. We send our condolences to her family.
Newsletter march 2014
March 2014 Newsletter IRISH ISSUES
New Ward for Crumlin Hospital Management at Crumlin hospital have confirmed that they have received funding from a private anonymous donor to refurbish part of an existing ward into ensuite bedrooms for GI patients. This is a big breakthrough and will help our patients who need isolation or a special bed.
Medical Information Day The GI team in Crumlin hospital have suggested holding a teenager information day. We are going to discuss this in more detail at our next meeting with them.
District Nurse Campaign The GI team in Crumlin hospital are still following up on this. Apparently it has been agreed in principle and the HSE now have to conduct training for district nurses. This has had slow progress but all involved believe that it will happen. If anyone has contact with their district nurse please ask them about this awareness campaign and let us know whether it is on the ground yet.
Transitioning from Crumlin Hospital to St. Vincents Hospital. When children move from Crumlin to Vincents it is a big day for the child, the family and the GI team. We have had a few ideas to mark this occasion and will discuss them with the GI team at our next meeting.
Dearbhla's wedding Dearbhla Conner, liver clinical nurse in Crumlin hospital got married in March. We gave her a present from CLDI.
Medical card We had a meeting with the Ombudsman for Children. They deal with individual issues so anyone who has been turned down for a medical card can send a complaint to them. However their role is to ensure that the application has been handled correctly by the HSE. So any complaint needs to have gone through all of the appeal procedures. They do not get involved in changing government policy or in fighting for something that the complainant thinks is unfair.
They suggested that we approach the Advocacy services in the HSE. We have done this. They are arranging a meeting for us with someone from the medical card section. We would like to hear from anyone who has been turned down for a medical card. The more stories we have the stronger our case is for medical cards for all children with serious liver disease.
Drugs Payment Scheme Some of the medicines for our children are not covered by the Drug Payment Scheme. This can be costly for families who have to pay for them. We have asked HSE patient advocacy to try and see if these medicines can be put on the Drug Payment Scheme and then would be covered by a medical card or the €144 per month.
SOCIAL AND ORGAN DONOR AWARENESS
Family Day at Baldonnel We had a great day out in Baldonnel in November. About 80 people attended. The Aer Corps put on a fantastic display. A report about it is in the news section on the web site.
AGM Suggestions about incorporating the children into the AGM were taken on board from the AGM last year. We are investigating options for a suitable venue for adults and children. Hopefully we will hold the AGM for 2014 in the Autumn.
Transplant Games Colin White, Manager of Irish Transplant Team, attended the Baldonnel day. Deidre Faul, a team member and winner of many gold medals also attended. They gave a good idea us of what is involved. We hope that some children will get involved as a result.
Calendar promoting Organ Donor Awareness Deidre Faul approached us to help her to develop a calendar to raise organ donor awareness, in honor of the 10th anniversary of her own liver transplant. She asked us if any children who would like to be in the calendar and the resulting photos were fabulous. All proceeds were divided between CLDI and the St Vincent's Foundation. She sold all of the calendars in the run up to Christmas. She raised €1270 for CLDI.
Website We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.
CLDF have stopped doing their couch web casts. However if anyone has used their other services please let us know what the experience was.
Facebook Our Facebook page is now in operation and is successfully spreading the word about different events. It was used to publicise the Santa Express (organised by Crumlin Hospital) which some of our families were lucky enough to attend. If anyone has anything that they think we should share please let us know.
Organ Donor Awareness Week We were asked to put someone forward for the PR for Organ Donor Awareness Week. Ellie Cole has appeared in many photos for the campaign.
UK ISSUES
Treatment Abroad Scheme and Payment of Flights to London We have not made any progress on our attempts to get flights paid up front. We are taking this issue very seriously as some families have found themselves in unbelievably difficult situations. We continue to make representations to the HSE and plan to do all we can to resolve this issue.
Hardship Fund The fund is operating well and helping many families. If people have any suggestions on this fund, please email CLDI.
Ambulance Service We have been in touch with the ambulance services regarding the financial pressures that they are under. We have been trying to ensure that the services that were put in place following the HIQA report are not compromised as a result of their financial issues. This is ongoing at present.
The Ambulance service, NACC are looking for feedback on trips to London. They are keen to improve the service for future users and past experience is the best way to do this. We have put this request on the CLDI website and sent an email about it.
FINANCE AND ADMINISTRATION
Charity Number Getting a charity number has been on our to do list for some time. A couple of runs have been made at it. We plan to put some effort into it again and hope to have it by the end of the year.
We have received more generous donations.
The 2014 accounts are being prepared. If anyone would like to see them before the AGM please email CLDI. They will be presented at the AGM.
santa express 2013
A number of families were lucky enough to get places on the Santa Express this year 2013. Below is the report of one of them.
Tara and I had a fantastic day. We arrived in Crumlin at approx. 2.30pm and were welcomed by Carol singers, dancing, elves, Tea/coffee, mince pies and food for the kids. The atmosphere was electric. I have to say the nicest thing for me was to sit there listening to the carol singers, and not have to attend an appointment :)
We then went on buses, with Garda escorts, to Dublin Airport. This was Tara's favorite bit as she felt so special. When we arrived everyone was so nice and welcoming. When we got on the plane, the atmosphere was electric. Tara could not contain her excitement. We were in the air about 20 mins and then Santa came on the air and landed his sleigh on top of the airplane. I thought Tara would get sick with the excitement. He had a pressie and a few minutes for every child.
Tara summed up the day on the way out when she told me that it was so nice of Santa to take a break to come and see all of us!! A true believer.
Fantastic.
Anne
INVITE
We have been asked by Crumlin to publicize this event.
If you do go on this event we would love to hear how you get on.
Our Lady's Children’s Hospital is the beneficiary of a 70-90 minute flight across Ireland for the children of the hospital to try and find Santa Clause!. This event is scheduled to take place on Saturday evening 7th December 2013. The number of seats is limited. Parents/guardians are advised to complete the ‘Nomination/Consent form’ & return it to the address provided on the form as soon as possible (Closing date for return of forms is Thursday 7th November 2013). Please review details below about this special event!!
SATURDAY 7th DECEMBER 2013
The trip is for 1 child & 1 guardian. Each child must be accompanied by an adult guardian.
The trip will commence from Our Lady’s Children’s Hospital (OLCHC) and all those travelling will be asked to come to OLCHC that afternoon for a small party and to register for the trip.
Please note times are subject to change and will be confirmed nearer the date. See Terms & Conditions overleaf.
OFFICE OF THE DIRECTOR OF NURSING June Farrell-Biggs, Tel: 01 409 6308
Terms & Conditions
Should you wish to nominate your child, please note the following Terms & Conditions.
Please see the Nomination/Consent form. This form must be signed by a parent/legal guardian and returned to the address provided on or before Thursday 7th November 2013. Your signature on this form signifies that you agree to the following terms and conditions.
This trip is for patients of Our Lady's Children's Hospital, Crumlin.
The trip is for 1 child and 1 guardian. Each child must be accompanied by an adult guardian.
Age group: The suggested age for this type of trip is between 4-9 years (exceptions can be made).
This trip may involve considerable walking & may involve standing / periods of waiting. Wheelchairs and buggies may be required.
Register: Children and their parent/guardian are requested to register at the Elf Check-In desk located in the Ground Floor, Medical Tower between from 2:30pm.
Parking at OLCHC: Free parking will be available, please specify on Nomination/Consent form if you require parking. This is to ensure sufficient car spaces (subject to availability). Elves will have the car park clearly marked for you on the day!.
Photo Identification: No Photo I.D. or passports are required.
Medical personnel: There will be medical and nursing staff from the hospital on the flight. There will also be volunteers from Our Lady’s Children’s Hospital, The Children’s Medical & Research Foundation, Sumitomo Corporation, Aer Lingus, Glencree Management and some entertainers.
Dietary Requirements: Please note on the consent form if you have any special dietary requirements. Selection boxes will be provided to children on the flight by our sponsors. An alternative healthy option will be available if requested, so please inform us on the Nomination/Consent form attached.
Transport: Coaches will depart the hospital at approximately 3:50pm. You will be advised at check-in desk which colour-coded ‘elf coach’ to board.
Group Check-In: Please refer to the information given to you at the airport as to where to Check-In. A group check-in at Dublin Airport has been arranged to facilitate the group travelling and will make it easier for all. Group will be met by elves in airport to show you where to go.
Flight: This internal flight is being operated by Aer Lingus.
Cancellation of Flight: In the event of poor weather etc. the flight may be cancelled at short notice. All travelling will be informed if this occurs.
Parent/Guardian may be required to sign an additional consent form from the sponsors.
Return transport: Coaches will return directly to hospital. Anyone wishing to make their way home direct from the airport, please advise elves of this when first registering at check-in desk in hospital.
For queries:
June Farrell-Biggs, Office of the Director of Nursing Telephone: 01 409 6308
Baldonnel 2013
What a day we had a Baldonnel! Approximately 80 people were there representing the families of CLDI. They were a variety of ages and came from all parts of the country. We saw the flight simulator and some were lucky enough to have a go landing the plane. There were guns on show. I think most of us got closer than we ever thought we would.
After lunch we went to see the museum which show planes through the ages and gives some history of the Irish Air Corps. There were helicopters planes, and fire trucks for us to climb in and out of. It was fantastic to see the 'big kids' as excited as the children. We also got to see and hold the hawls and falcons that protect the aerodrome from birds.
It was great fun and there was something there for everyone.
It was also wonderful to meet the children that we have been hearing about and to see them enjoying themselves.
We have to thank the Air Corps for hosting us. They really pulled out all the stops.
INVITE
We have arranged a day out in Baldonnel for 30th November 2013 at 12.00.
It is a great opportunity for those of us who have used the services to see it in less frantic times and to thank the Air Corps. Also it will be great for those who may have to use their services in the future to see it. And let be honest it is fantastic to have an excuse to see the planes and helicopters.
All CLDI families are invited.
We need to give the Air Corps an estimate of numbers so if you are interested in attending please let us know on childrensliverdiseaseireland@gmail.com
newsletter October 2013
IRISH ISSUES Crumlin Hospital
Following our meeting in April, we agreed to try to address issues with the hospital.
The Crumlin hospital web site now has lots of the information that we were looking for. The link for it has been put onto our site.
We investigated parent accommodation. The information about it is now on the website.
We approached the hospital about a dedicated ward. The hospital are hoping to start work on a new 5 bed (all en suite) ward next year dedicated to GI patients. There may need to be some fundraising to complete the ward. We will wait to be approached by CMRF (Crumlin Hospital’s charity) before we decide on our involvement.
Medical card
Many members are having problems as medical cards for their children are being withdrawn. We have decided to try to get this sorted out for all our children and get the HSE to recognize children with serious liver disease as people who require medical cards. We have written to the Ombudsman for Children about this and other issues common to our children. If someone has been refused a medical card for their child and would like to complain to the Ombudsman for Children please do. It might help our cause. We will put a link to the Ombudsman’s side on the web site.
District Nurse Campaign
A meeting is being held between the GI team and the head of the district nurses next week. They are hoping to roll out an awareness campaign to all district nurses in Ireland.
Transitioning from Crumlin to St. Vincents.
When children move from Crumlin to Vincents it is a big day for the child, the family and the GI team. We are investigating what we could do to mark the occasion.
SOCIAL
Family Fun Day
WE spent a lot of time trying to organise a family fun day in Baldonnel, for this Autumn. However our efforts have failed and there has been a change of personnel in Baldonnel again. We will make one more attempt finalize a date for the family day with them. Should that not work out we think that it is important to have a family day anyway. We will investigate the options for an alternative venue for a family fun day in Spring 2013.
Medical Information Day
The GI team suggested that we do a day where we have various professionals speaking to the group. In principle we think it is a good idea but that a family social day takes priority.
Transplant and Donor Games
Sylvia and Aoife attended a sports day in ALSAA organized by Colin White, manager of the Irish Transplant Games Team. There were not too many children there. Colin White of IKA is hoping to approach other organizations associated with transplantation to try to get more children involved. He would like to organise a team of younger children to attend the British Transplant Games and get more teenagers involved in the European and World Transplant Games. These events are a combination of fun and competitive competitions. Colin White’s schedule of activities were put onto the CLDI website. We are hoping to help him make this more inclusive for children in the future.
We would like to congratulate them on the wonderful haul of medals from the World Transplant Games in South Africa. They won 34 medals-12 of them gold. Four of the medals were won by the first Irish adult liver transplant recipient-Tony Gartland-20 years after he received his transplant.
Website
We are always looking for more stories to put on the website. Grannies, Granddads, aunts, uncles, cousins, brothers, sisters and friends all share in the experience. They are all welcome to write their story, we are sure other people’s friends and relations would like to read them.
We contacted CLDF (UK children’s liver charity) regarding methods of having regular web chats. They said that they do them regularly but do not get a high level of attendance at them. Therefore it is not practical for us to do them. We agreed to put their details for chats and information on the CLDI website so people who needed to chat to someone could do it through CLDF. If anyone would like to contact someone in Ireland we can put them in touch.
For a variety of reasons our facebook page has been inactive for some time. The issues have now been resolved. We are planning to use facebook as an additional method of keeping members updated. If you friend our page-childrens liver disease ireland- you will get all of our posts.
Organ Donor Calendar
Deidre Faul of the Irish Transplant Team is putting together a calendar for Organ Donor Awareness. She is planning to have photo of an organ recipient for each month. She would like to include photos of children and asked us to see whether any of our children are interested. A photographer would take a photo of the child doing an activity that they enjoy. We will put this request on the website and sent out an email looking for volunteers.
UK ISSUES
Treatment Abroad Scheme and Payment of Flights to London
We are still in negotiations with the Treatment Abroad Scheme about the TAS setting up an account with an airline. This would mean parents could book flights on account and stop having to pay for them and then reclaim them.
Hardship Fund
The fund is operating well and helping many families. If people have any suggestions on this fund, please email CLDI.
Emergency Visas to the UK
In the past some parents who do not have visas for the UK have been delayed in getting to Kings to be with their children. The GI team now has a contact with the British Embassy which should overcome this issue.
Ambulance Service
The Ambulance service, NACC are looking for feedback on trips to London. They are keen to improve the service for future users and past experience is the best way to do this. We have put this request on the CLDI website and sent an email about it.
FINANCE
So far in 2013, we have received four very generous donations. Thanks to everyone for their efforts in raising this money. The money will be spent between the hardship fund and improving things for children in Ireland.
Further details will be in the accounts for the year ended 31 December 2013.
Meeting minutes on 28th April 2013
Meeting of Children’s Liver Disease Ireland on 28th April 2013 Thanks to those who came to the meeting and contributed. The most important part of the meeting is meeting people who have a similar experience with one of their children.
Apart from people sharing their child’s experience to date, below are the main topics discussed in the meeting, with the resulting action points.
Crumlin Hospital Discussed Points • Difficulty Parking • Poor parent accommodation. • Food – Told there is a delivery service to ward, food cart. Breakfast, Lack of ability to have coffee in room on ward. • Loud banging doors, loud music on corridor • No shower/one shower on wards • Crumlin should have parent representative body but haven't set it up. We would be able to bring these things up to this body. • Lack of Dedicated Ward
Action Points • Put information on Crumlin Hospital on web site in a similar way to Kings Hospital. • Prepare/Find an admission sheet with useful information including about showers and canteen • Get Hospital to set up a Parent Representative Body • Review parent accommodation - Find out the criteria for Ronald McDonald House, Other houses near hospital, Look at funding an apartment or house close to the hospital. • Lack of Dedicated Ward – a. Contact consultants to see what they need clinically, b. Follow through to get what they need
Transplant and Donor Games Discussed Points • Colin White from Irish Kidney Association runs the Irish Team for the British, European and World Transplant Games and would like to get more liver transplanted children involved. • We are looking for children who would like to get involved. • The meeting agreed that CLDI would help fund travel to transplant games for members • Kings bring group skiing. Must be aged 8+.
Action Points • We will start to put the schedule of activities from Colin White on CLDI web site • We will attend 19th may sports day in Ailsa • We will find out more about King’s skiing trip
Further Meetings Discussed Points • Planned Family Day with Irish Aer Corps in Baldonnell in September • Suggestion for a day consultants, dietician, physiologist, etc a. Would children attend and be minded? b. Other groups get it paid for by drug companies c. Suggestion that we should get the hospital to organise it, while we strongly support. d. Marian can get pamphlets of other days for other groups that are not a conference, just fairly general and loose.
Action Points • Keep going organising Family Day in September • Discuss further day with dearbhla and ger and consultants, perhaps one for 2014.
Travel To the UK Discussed Points • Aer Corps have to have a medical person fly with a patient. • One family’s baby had to fly with the Aer Corp without either parent, as there was no room on the aeroplane. • Following 2010 Hiqa Report, this has been addressed and the Aer Corps only have one helicopter which if used, may result in a parent being left behind. • Social Worker in Crumlin was asked to travel to Kings Hospital to increase her knowledge of what families face in their travel.
Action Points • Follow those set out in the Annual Report
Organ Donor Awareness Discussed Points • Activities as outlined in Annual Report
Action Points • Ann Marie Howard is joining the sub committee • Sub committee to look at Irish Donor Network activities re proposed legislation.
Finance & Administration
Website Discussed points • Stories on website • Opinions from new diagnosed families view the website • Opinions on replying to a new member’s registration – survey etc.
Action points • Increase the information on the website. • Update website looking for more varied stories. • Add information to help new diagnosed families. • Try to gather more information from members to help but people in touch with each other.
Communication Discussed points • How best to communicate between members
Action Points • Continue with Quarterly Updates • Email for any major news • Look at UK charity’s CLDF’s forum for families to see if we to add onto it.
Newsletter February 2013
Newsletter FEBRUARY 2013 1. Awareness of Childhood Liver Disease
District Nurse Campaign - The Brochures for the District Nurse Education Campaign have arrived and the GI team are working on getting them approved by Crumlin Hospital so they can be distributed to all District Nurses.
Organ Donor Awareness - The Irish Donor Network is getting very active in lobbying the government for proper funding and legislation for organ donation.
We are the only peadiatric group in the Irish Donor Network and they are keen for our group to be involved. We are setting up a sub committee within CLDI who will liaise with the Irish Donor Network and see what we can do to raise donor awareness. We are very keen to hear from anyone who is interested in this area.
2. Support
Family Day - We are working on having a family day with the Aer Corp in Baldonnel this summer.
Website - The website continues to attract new members. Should you wish your family’s story to appear please send it on. All stories help new parents.
Transplant Games and associated sport and social – The Irish Kidney Association would welcome our involvement in their sports and social events for children, teenagers and adults. Some liver children and adults are already involved and we are looking for someone to coordinate our involvement with the Irish Kidney Association in this area. Easy job as they do all the organising, we just need to turn up!
3. Hospitals and Health
Transport to UK - We are continuing our efforts to get the recommendations from the HIQA report implemented. As part of this some changes are being tested in the administration area of people going to the UK. We would really appreciate it if anyone who has recent experience of going to London could let us know their experience. Discussions with the HSE are much easier with real examples from families.
Transition to St. Vincents – We have made contact with an adult liver transplant recipient who would like to help with the practical side of teenagers moving their care from Crumlin to St Vincents. Would a teenager or their parent like to make up a list of questions on the move to St Vincents that we could get this lady to answer as a start to the process?
4. Administration
Finances - We have been negotiating with CMRF (the charity associated with Crumlin Hospital) for the release of funds held by them on behalf of the liver unit. We are hoping to get an annual allocation of money for CLDI and the GI team.
This funding would be used for the hardship fund, training bursary for members of the GI the team, family day, information campaign, web maintenance etc.
Charity number - We should make some progress with this as we now have a volunteer.
Should anyone wish to offer opinions, expertise or become involved in any of these areas please contact us on childrensliverdiseaseireland@gmail.com