Below is the leaflet which is being issued by the HSE to all families whose children have to go to London. This leaflet has been developed with the help of CLDI.

 

Paediatric Liver Transport – Information for Parents

This leaflet is for parents whose child has been referred to King’s College Hospital (KCH) in London. As a parent or guardian in this situation there is a lot of information to take in, as well as the emotional aspect of the diagnosis. This leaflet helps you to prepare for the practicalities of each visit to KCH, includes preparing for the journey, your child’s stay in KCH and returning home after your child has been discharged.

There are 5 reasons why your child may have to attend Kings College Hospital. (KCH)

1 Assessment for Liver Transplant Listing

For an assessment, your child may be seen as an inpatient or outpatient.This is a short stay of 2-4 days.

2 Assessment for Live Liver Donation

Your child may receive a part of a liver from an adult relative.The potential adult donor will need to be assessed. This may involve 2 different visits that last 1-2 days.

3 Transplant Operation and Care

When your child is to receive a potential organ, their stay in KCH could be from 10 days up to 6 months.

4 Post Transplant Check Up

A Post Transplant Check Up is usually a short stay of 1-2 days.

5 Diagnostics and Treatment

Your child’s consultant may recommend you attend KCH for diagnosis and treatment that may not be available in Ireland.

Subject to prior approval, the cost of your child’s treatment abroad is covered by the Treatment Abroad Scheme, and this scheme is described in detail on www.hse.ie/treatmentabroad. The scheme is covered by EU regulations and administered by the HSE.  To avail of the scheme you need to first get your appointment letter from KCH, and then contact the Treatment Abroad Scheme Office on 056 778 4551 to get the E112 form and complete it.  If your child has not received an appointment letter prior to their departure to KCH, please get one when your child is at the hospital.

When your child has treatment abroad each trip or episode of care is viewed individually, so you may need to apply separately for different trips.  Your child’s referring consultant in Ireland remains responsible for them at all times in relation to the treatment in question, except while your child is an inpatient in KCH and is the clinical responsibility of KCH.

Ways of Travelling

If your child is an inpatient or an emergency case when referred abroad for treatment, then medically assisted travel will be required.  This is provided by the Irish Air Corps, Irish Coast Guard or by private air ambulance.

If your child does not need an air ambulance then you will travel on a commercial aeroplane or boat depending on your preference.  The costs of this will be reimbursed to you in line with HSE Treatment Abroad Scheme.

Planning Your Trip

The Treatment Abroad Scheme covers the cost of your child’s treatment in the UK.  The Scheme does not provide payment for costs other than the medical treatment. The HSE recognises that overseas travel costs are not something a patient would incur if the treatment was available in Ireland.  The HSE has a National Travel Policy to cover the cost of air or sea fares of your child and one accompanying adult in the case of an approved treatment abroad.  Receipts for your travel should be sent to the Treatment Abroad Scheme Office, St. Canice’s Hospital, Kilkenny (056 77 84551) and you will be reimbursed.

Unfortunately, the HSE cannot provide advance payments to pay for flights, this is contrary to financial regulations.  Once you have paid for flights the HSE will reimburse you in accordance with the TAS travel policy.

If your child’s procedure is cancelled after you arrive in London, then you will need to have enough money (or a credit card) with you to book and pay for flights home.  The cost of these for the patient and one accompanying adult will be reimbursed by the HSE in line with the National Travel Policy.

If you think you will have problems meeting the costs of availing of treatment abroad then you should contact your local Community Welfare Officer.  Community Welfare Officers work for the Department of Social Protection, www.welfare.ie and may help with an exceptional needs payment.

The UK currency is pounds sterling (£STG).  Put aside some sterling in advance of your trip as that will be one less thing to worry about when you travel.

Other Children

Remember if you have other children they’ll need to be cared for and brought to school while you are away.  Will one parent stay home and perhaps travel later?  Nominate a family member, friend, child minder or neighbour who can step in to mind your children particularly if you have to leave in an emergency.

Passports/Photo ID

If you don’t have a current passport you should get one. You can get a passport through An Post which operates an express service in 10 days. The standard fees associated with obtaining a passport are a statutory requirement so the Passport Office has no discretion to waive them.

There is no legal requirement for Irish citizens to use a passport for travel between Ireland and the UK, you can use photo ID like your driving licence.  Children under 16 don’t need photo ID for travel between Ireland and the UK when accompanied by a parent or guardian.   However, certain airlines insist passengers have a passport for travel to the UK.  Make sure you check with your airline before you travel.

Where to stay

Irene O’Reilly the Family Support Worker at KCH will discuss accommodation for parents at KCH during your child’s visit.

Irene O’Reilly

Family Support Worker

Tel:     00 44 (0) 20 3299 4415 / Pager 07659 9150

Information on hotels that other parents have used is on the Children’s Liver Disease Ireland support group’s website www.cldi.ie.

When your child returns home

Each time your child is discharged from KCH, their Irish consultant will receive their clinical notes so that continuity of care is assured in Ireland.  The transfer of this information is the responsibility of the clinicians involved in the care of your child.  Once your child comes home following their transplant they will need to attend hospital as an inpatient or outpatient.

Travelling by commercial flights

Travel by commercial flight is normal practice when your child is being assessed, is returning to Ireland after their treatment or if the transplant does not go ahead.

Parents need to remember to plan the whole journey, from Ireland to the UK, transferring from the London airport to the hospital by train, bus or taxi and returning to Ireland following treatment.   Check out transport in London on www.tfl.gov.uk

Air Ambulance Transfers (including emergency transfers when a potential organ is available for liver transplantation)

When the consultant refers your child for an assessment for a liver transplant, nursing administration will contact the HSE National Aeromedical Coordination Centre (NACC).   The NACC will develop your child’s Transport Logistics Plan.  The plan takes into account where you live in relation to airports and how to get your child to the airport within a set time.  It includes information provided by the referring hospital to NACC.  Once your transport plan is prepared it will be communicated to you as soon as possible by your referring hospital.  Familiarise yourself with your Plan so you are prepared when a potential organ becomes available. Your Plan has a contact number for you to ring if you have any queries.

When the call comes and the transfer takes place

When your child is called for the transplant it will be an emergency situation.  The HSE uses the term “Priority One Call” to describe these transfers.  Your UK transplant co-ordinator will call you to say a potential organ is available and you should make your way to the Hospital in the UK as soon as possible usually within a given time frame.  What happens next depends on whether your child is in hospital or at home with the call comes.

If your child is in hospital:

If your child is an inpatient in Ireland when a potential organ becomes available or your child needs to be transferred for other treatment or assessment then the transfer to the UK hospital will be organised by the hospital and the HSE Ambulance Service.

If your child is at home:

The NACC supported by information from the referring hospital will have drafted your child’s Transport Logistics Plan, based on your home address and how far you live from an airport.  All your transport instructions will be relayed to you by NACC only and you should follow them carefully.  The Irish Air Corps and the Irish Coast Guard provide these emergency transfers.  If neither of these are available the NACC will seek assistance from a private air ambulance provider.

When you get the call for the liver transplant please bear in mind that this is an emergency situation and time is of the essence.  You need to get to the airport.  Keep fuel in your car.  If you get a call late at night there may not be a petrol station open to refuel.  The Gardai may provide you with a ‘blue light’ escort to the airport.  In the event the Gardai are not in a position to assist on the night then the National Ambulance Service will provide the transport.

Luggage

Have your bag prepared.  You may bring two cabin size bags onto the air ambulance.  These should weigh between 10kg – 20kg.  The luggage restriction is so low because Air Ambulances are just that – Ambulances with lots of equipment.  Space and weight on the flight must be borne in mind – increased weights slow travel times and may influence the number of refuelling stops needed especially if using a helicopter transfer.  Remember too that you will be transferring to a ground ambulance on touchdown in the UK so again space and weight are a consideration.

If travelling for a transplant you may be in the UK for a number of weeks. You won’t be able to fit all you need into a cabin size bag.  Your cabin bags should have the clothes, medication and toiletries you and your child need for the first few days.  Make a list of other things you need and nominate someone to pack and send these onto you.   There are companies that will transfer luggage for you from Ireland to the hospital in the UK such as ACA International located at Dublin Airport.  Contact details for ACA International are: John Prendergast 086 823647 or prendergastjohn@ireland.com .  You may need to have the luggage transferred to the company’s base from your home so again nominate someone who can do this.

Who can travel in the air ambulance?

The agreed position is that the Irish Air Corps will accommodate one parent along with the child.  However, there is usually no issue with the second parent travelling too.  There are a number of things you as the parent need to be aware of when being transferred via air ambulance.  The transfer of a child in any emergency situation is an emotionally fraught situation.  The pilot has the right at the time of take off to refuse passage to any passenger.  Air Ambulances are not commercial aeroplanes.  They are small and there is open access to the crew.  The pilot is responsible for the safety of all passengers.  When transferring an unstable patient it is possible that their condition could deteriorate mid flight.  This is a highly unlikely scenario but is a flight consideration so it is one we must bring to your attention.  In this scenario an emotional parent could hamper the crew and the safety of those on board.  This is the type of reason that could cause a pilot to refuse to take a passenger at the time of take off.

In the UK
A ground ambulance will collect you at the UK airport and take you to KCH.

Cancelled Liver Transplant Procedure

There is one other scenario that you need to consider.  You could travel to the UK hospital but the procedure could be cancelled for one reason or another.  This is a very difficult situation for parents, first there was joy, anticipation and worry about the procedure but now you will be faced with the emotional upheaval of having it cancelled.  If you have a credit card, booking flights home may not be an issue for you but if you don’t you need to have prepared for this scenario.

For more information

Other parents have put their experiences on the Children’s Liver Disease Ireland website  www.cldi.ie.  We recommend you visit this web site.

 

HSE Treatment Abroad Scheme 056 77 84551 www.hse.ie/treatmentabroad
National Ambulance Control Centre 057 9358174, 057 9358175,
057 9358165, 057 9358166.

Temple St Children’s University Hospital, Tel 01 8784224 www.cuh.ie

Our Lady’s Children’s Hospital Crumlin, Tel 01 4096100 www.olchc.ie

The National Children’s Hospital Tallaght, Tel  01 414 2000 www.amnch.ie