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"Paediatric Heart Services"

About: Our Lady's Children's Hospital

(as a staff member posting for a patient/service user),

In September 2020 I was told by my heart consultant at the Royal Children’s Hospital that it was now time to surgically repair my 4 year old daughters VSD via keyhole surgery. While this was not urgent, the doctor felt that a spurt was damaging her heart valve. This surgery would be via keyhole surgery in Dublin and the appointment and information given all went well.

In May 2021 I was contacted via Belfast to ask me to bring my daughter to Dublin in 7 days time. After organising emergency leave from my job as a teacher and alternative childcare arrangements for my other 2 daughters to allow my husband to come, we were informed on Thursday that the surgery on the following Tuesday was cancelled. The reason for this was given as the Cyber attack on the Irish healthcare system. At the time I understood these exceptional circumstances and I was assured my daughter was top of the list and would be contacted soon. We then ensured that required faecal samples were up to date.

In July 2021, the day before my mother passed away from cancer, I received a phone call this time directly from Dublin asking me to bring my daughter in. Given the circumstances it was agreed that she would be put on the surgery list for a week later with the proviso that this could be cancelled due to an emergency. What followed from here was, and still is, a catalogue of poor communication between Dublin, Belfast and myself.

I had to contact Emma in Belfast directly who was very helpful and organised COVID tests and a hotel room. they sent out a useful information pack, although it was clearly written for pre COVID operations and I was disappointed that it wasn’t clear what changes COVID would make.

Heartbeat Trust were also helpful in giving advice about car parks and available resources in Crumlin Children’s Hospital.

A few days before the operation, I contacted Dublin early the morning to be told that my daughter’s surgery was cancelled due to emergencies and a limited surgery list. It was unclear at what time I might have been informed of this. I contacted Belfast to inform Emma to cancel the hotel, my husband Knockbracken to cancel our COVID tests and then I cancelled my childcare arrangements. Finally I had to inform my 5 year old that, for the second time, the doctor couldn’t fix her heart this week. In the meantime she was put down for another date in the coming weeks.

At 2:00pm a few days before the new operation date, I confirmed the hotel and COVID tests with Emma and then received a phone from Dublin saying that, due to a limited surgery list and emergencies, My daughter’s operation was cancelled. I rang Belfast, COVID test centre, childcare and then told my daughter for the third time that her heart couldn’t be fixed. She was put on the surgery list for a week later.

During the week I heard nothing from anyone regarding surgery. On Friday I telephoned Dublin for information but there was no answer despite several calls. The previous week we had been told the surgery would proceed and we would be telephoned the day before the operation with details of admission. We proceeded with our COVID tests, packed our bags, prepped our daughters for staying away and My daughter for her operation. I telephoned Dublin at 10:30am, just to be sure, where I was informed that the reason no one had taken my call due to holidays.

Of course, this is expected at this time of year but I’m so disappointed that no one else took over our case during this time , contacted us or answered our calls. We were then informed that the operation was cancelled again. This time it was because the surgeon was absent this week so the operation could not happen. I then had to ring Emma to cancel the hotel and tell my daughter for the 4th time that we couldn’t get her heart fixed.

I am so disappointed at the reason for this cancellation as I cannot understand how we were put on a surgery list of a surgeon who wouldn't be there. Nor do I understand why no one contacted us at any point to tell us this. I wonder when Dublin would have contacted me had I not telephoned. I was told I would be contacted regarding confirmation of surgery for next month following a meeting but I received no phone call. While on the phone to Emma I reiterated that this situation is very difficult for us as a family and she was understanding. As a teacher my holiday period will end on 12/8 and my daughter is due to start school on 27/8. My husband’s work have been told he will be on holiday 3 times and have been flexible in allowing this to cancelled but their tolerance is naturally waning.

In the meantime I feel that I cannot risk taking my family to any crowded areas in case anyone gets COVID which would result in cancellation. We have not celebrated 2 birthdays due to bereavement and the ongoing surgery issues and have not taken any time away this summer. I am a tolerant person and understand well the pressures our healthcare is under. I realise that emergencies can happen and there is always a risk of cancellation. However, this escapade of 4 cancellations, particularly this last one, and lack of communication has left me at the end of my tether. I can’t risk cancelling but the cycle of this system we are in at the minute is quite unbelievable. 

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