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