Tipperary families fear they won't be able to bring terminally-ill children home

Deputy Michael Lowry has again raised the absence of paediatric palliative care in the south east region, following news that two more families have reached out for the crucial service, which has not been in place in the region since 2017.

In reply to Deputy Lowry’s question in the Dáil, Taoiseach Leo Varadkar, replied “Certainly the political will is there to fix it and I guarantee you that the money is there. I am going to convene a meeting in the Department of the Taoiseach involving the Minister for Health and the HSE to get a proper overview of the paediatric palliative care service – find out what the problem is and then we’re going to fix it”.

Deputy Lowry thanked An Taoiseach for his commitment, adding that Minister Mary Butler has been very active in relation to the matter.

Deputy Lowry recalled during Leader’s Questions in the Dáil that early last December he pleaded for Paediatric Palliative Care on behalf of a family whose seven-year-old son, Danny, was terminally ill.

“They wanted to bring Danny home from hospital to spend his final days with them and his young brothers. This was also Danny’s wish, following endless months in hospital,” he told the Taoiseach.

“Imagine the anguish and helplessness they felt when they learned that bringing their precious boy home was not possible. That their child’s last wish was being denied because paediatric palliative care services are not available in the south east region where they live. There was a public outcry,” he said.

“Meanwhile, there was a frenzy of activity within the HSE in the region. The spotlight was on them and there was no escaping its glare. They had to act. This ultimately resulted in a full palliative home care package being put in place for the family. This would not have happened if it had not been raised in this House.

“Danny did come home. He came home just days before he left this world,” said Deputy Lowry.

“At that time I stated categorically that the trauma inflicted on this family could never be allowed to happen again.

“Taoiseach, just four months later, it has happened again. In fact, two families are reaching out for help at this time.

“One family has been forced to publicly highlight their plight in an effort to get paediatric palliative care for their four-year-old daughter. The mother of a terminally ill 11-year-old girl in Tipperary has contacted me regarding her fear that she will not be able to take care of her beautiful daughter in the familiarity of her own home.

"She is distraught at the prospect of not having her daughter at home for her final hours in the company of her family and friends.

“Families should not have to resort to politicians or the media at such a painful and difficult time. It is gut-wrenching to think that this is their only option.

“Absolutely nothing has changed in the south east region with regard to paediatric palliative care. How has this situation been allowed to continue? Why is the south east region, which comprises south Tipperary, Kilkenny, Wexford and Waterford the only area of the country where paediatric palliative care does not exist?

“The region has an excellent palliative care service for adults, but the needs of terminally-ill children and their families are completely overlooked. Something is seriously amiss in the region and it must be addressed.

“Children and families have been without this service since 2017. We do not know how many children and families have suffered as a result as many have done so in silence,” said Deputy Lowry.

He went on to say that, despite her personal grief, Danny’s mother, Lisa, has maintained her campaign to ensure that paediatric palliative care is available in her area.

“This brave and determined mother wants to ensure that no other family will have to resort to the measures that hers did.

“In a letter sent just one week ago to HSE officials and public representatives, Lisa stated ‘that there seems to be no movement in terms of the appointment of a paediatric palliative care consultant in the region, or the implementation of training for the existing community palliative care nursing team in paediatric palliative care’.

“Taoiseach, the bottom line is that no parent should have to plead to get end-of-life care for their child in their own home.

“This care plan must be in place and readily available to all in such difficult and traumatic circumstances, regardless of where they live,” said Deputy Lowry.