CLDI 6th May 2017
There are 450 children under the team in Crumlin with 66 having undergone transplants.
We discussed the power of parents groups and the fact that groups produce much more pressure on the issue than can be produced by individuals.
All attendees introduced themselves and explained their situations
SERVICES TO THE UK
The Treatment Abroad Scheme (TAS) continues to be a difficult service to deal with and here are some of the concerns raised
Only one parent flight being funded, no consideration of siblings needing to visit children who are in Kings for a longer term
No baggage allowance / seat allocation / flexible fares allowed
Difficulty in getting payments sanctioned, some families can have a large backlog of payments owing to them, one mentioned their financial stress due to being owed in excess of €2000 from the TAS
General lack of empathy and understanding from personnel in the TAS
Backlog of payments allegedly due to staffing shortage, recent development is the promise of some temporary staff cover
We discussed the possibility of establishing a system where families could be given a voucher/code to get a ‘Medical needs fare’ would enable a much less stressful and cumbersome way of booking travel directly with the airline
Micheal Martin has been supportive of seeking improvements in the level of service currently being delivered. His ongoing involvement will be sought
TO DO : a. Contact Aer Lingus and Ryanair to try to get a ‘Medical Needs Fare’. Sylvia, Aoife
b. Contact Michael Martin to discuss TAS. Susan, Aoife
c. List of tips on how to apply for TAS and how to deal with them. Susan
2. UK EMERGENCY TRANSFER ISSUES
Baldonnel only opens between the hours of 9am to 5pm due to lack of air traffic controllers and trained pilots and the coastguard is providing cover when available.
The option of having an aircraft at Dublin airport is not an option due to air corps policy.
Some families with a child currently on the transplant list have had to make the decision to move to London as transfer within the six hour window cannot be guaranteed. Such families are currently not in receipt of any financial support from the HSE. However children currently on the transplant list for cardiac have a four hour transfer window and due to this shorter time frame these families do get financial support. CLDI believe that this differentiation is illogical and unfair.
It was agreed that a letter from CLDI will be drafted highlighting that the current situation stating that it needs to be sorted. The letter will address the current failure to guarantee the transfer of children within the required timeframe is in breach of the HIQA recommendations set out following the investigation into McGivern case and this is causing great concern to CLDI. We will start with sending a letter to Crumlin hospital and then send another letter to the Department of Health.
TO DO: a. Write a letter to send to Crumlin Hospital and the Department of Health. Aoife, Sylvia
3. KINGS HOSPITAL
A number of services have changed in Kings. We are hoping that current patients of Kings will be able to help us update the website.
TO DO: a. Update website with information. Sylvia, Karen
Concerns were raised about the impact of Brexit on the services with Kings in the future.
The NHS has segmented the globe and apparently Ireland is well placed on the priority list.
TO DO: a. A letter will be sent to Crumlin hospital to ask how they expect Brexit to affect the services. Aoife, Sylvia
SERVICES IN IRELAND
1.NURSING STAFF-The CNS Dearbhla has gone on maternity leave. She will not be replaced until June. Everyone was very concerned about the situation.
TO DO: Letter to Crumlin regarding the the decreased staff levels. Sylvia, Aoife
2. ENDOSCOPY–the backlog of endoscopies has been alleviated somewhat by the use of a private facility in Kildare. This is however not always suitable for Liver patients due the higher risks associated. The group have agreed to draft a letter to Crumlin to voice our concerns about the ongoing backlog in this area.
TO DO: a. Letter to Crumlin regarding Endoscopies. Sylvia, Aoife
3. KASAI - this surgery continues to be performed in London as a surgeon has not yet been put in place in Crumlin. CLDI to write a letter questioning the plans for this appointment / training of a surgeon and to express our concern about the current service.
TO DO: a. Letter to Crumlin regarding the future of Kasai surgery. Sylvia
4. NEW WARD – It is now up and running. Feedback from families who have used the new ward is very positive. Members who have had a positive experience are encouraged to write a letter of appreciation to CEO, to be communicated to benefactor who funded the beds.
We also need to put up a notice board and a plaque.
TO DO: a. Letters sent to Crumlin from families who have used the new ward. Susan, Evelyn
b. Encourage anyone who has used the new ward to write to the hospital with their positive experience. Anyone who has used the new ward.
c. Order and put up a notice board and plaque. Sylvia
5. CAR PARK VOUCHERS-
TO DO: a. Continue to try to get the vouchers. Sylvia
6. BENEFITS AND ALLOWANCE TO DO: a. A list of benefits, allowances and grants will be compiled and distributed to newly diagnosed cases families?
7. REVIEW OF AGM.
It was suggested that the activities of the meeting are not described well by calling the meeting an AGM. We could call it a Parent Networking Meeting.
It was suggested that the dates for the AGM should be reviewed as it clashes with the communion/confirmation season.
TO DO : Have the meeting in April and call it Parent Networking Meeting. Annamarie
1. FUN DAY
It was suggested that the fun day at Baldonnel should be organised for this year’s event. The Air Corps had said that they would love to have us again. It was a great success on the last visit.
TO DO: a. Get a contact in Baldonnel to arrange the fun day. Aoife
b. Organize the day out. Ciara
1. ORGAN DONATION AWARENESS
There is a reduction in the number of livers available. It is therefore important that we get involved in organ donor awareness.
Michelle our coordinator for last year sent a report. She had contact with the IKA. They made some suggestions regarding promoting organ donor awareness. She also suggested that the next coordinator should be closer to Dublin as the 2 events that she was called for were difficult to attend.
TO DO: a. Organ donor cards are available from IKA. Members can ensure that our chemists have donor cards in them. All
b. IKA have a program for transition year students on line. Members could promote it to their local secondary schools. All
c. New Coordinator to be found. Suzie and Annamarie said that they will take it on in the interim. Anyone who is interested please contact us. Suzie, Annamarie, All
d. Get a list of anyone who is happy to get involved in events. Any volunteers
2. TRANSPLANT GAMES
The transplant games take place in the UK every year. This is a great event for promoting organ donor awareness. It is also a great event for the children. Sean sent in a report about their experience of their daughter Tara who attended the event. She did really well and came away with a big medal haul. However he said his abiding memory was of two guys coming in last and second last racing each other and ‘doing what you can as well as you can’.
TO DO: Anyone who wants to take part contact Colin White at IKA. All
1. ACCOUNTS Accounts were presented to the meeting
TO DO: a. Put the accounts on line. Sylvia, Aoife
2. WEBSITE A number of issues arose regarding the website.
TO DO: a. Work on facebook – Deidre (Emma)
b. Put ‘Patients like me’, on the website-Sylvia
c. connect to ‘Liver Mums’ on facebook
d. A map of Ireland of Liver disease cases to be compiled (something like the Jo Ramsey liver cases map in the UK)
3. CHARITY NUMBER A discussion was had about the renewal of the charity number. A review is being made as to whether it is required.
TO DO: Finalise whether to continue with the charity number. Padraig, Aoife