THE HSE IS to provide local palliative care support for a family’s terminally ill son after his case was raised in the Dáil appealing for the boy to be allowed the right to “die at home”.

Tipperary TD Michael Lowry raised the boy’s case yesterday, reading a letter from the family appealing for their son to be provided care at home.

The boy, who is aged seven, has stage four cancer but could not get local palliative care.

It has meant the family making 14 journeys per week up and down to Dublin, where the child is under the care of Crumlin Children’s Hospital. 

But a statement today has confirmed that home care supports will be provided to allow the boy medical care at home.

“The HSE has agreed to put in place a full Home Care Package suitable to (the boy’s) specific medical condition,” Lowry told The Journal.

“The basis of this requires clinical governance and full-time care by nurses with very specialised skill sets.

“A consultant led palliative home care team will oversee (his) care, with an expert team of qualified nurses being redeployed.”

The TD added that this will enable the youngster to come home to be with his family and their circle of supportive friends.

Reading the letter into the Dáil record, Lowry said all the parents wanted is for their child to be afforded the right to die at home.

“It is something that no parent or family should ever have to contemplate in our situation

“At this point, our son has been battling stage four cancer for almost two and a half years. He has endured a grueling treatment schedule unfortunately due to the aggressive nature of the condition, he has relapsed and the disease is progressive.”

It added: “To be clear, we want and expect our son afforded the opportunity to die at home and have the same access to community palliative care services that he would have if he was an adult in our own area or indeed a child in most other community areas in the country.

“It is unacceptable that our son may have fewer choices with regard to end of life care due to geographical, political, financial, or resource issues. Unfortunately, time is not on our side and as such, we need a response to be actioned urgently.”

Lowry told the Dáil that the parents received a letter from the HSE informing them that community based pediatric palliative care in the southeast is not available and not been since 2017.

A spokesperson for HSE and South East Community Healthcare – which organises palliative care supports in the region – told this website that it “does provide comprehensive packages of care in particular circumstances”.

Its full statement read: “HSE/South East Community Healthcare does provide comprehensive packages of care in particular circumstances, inclusive of paediatric palliative care supports. The HSE/South East Community Healthcare liaises with acute hospital personnel and all relevant stakeholders in that regard.

“It would not be appropriate for the HSE/South East Community Healthcare to discuss individual circumstances but can do so directly with the families concerned.”

Since diagnosis, the young boy has had numerous cycles of chemotherapy, has had one of his kidneys removed, had a stem cell transplant and had 39 sessions of radiation as well as multiple bone marrow treatments and blood transfusions.  

His parents said that as he is “now in the last phase” of his illness, the “least that he deserves is the chance to die at home with his family, in his own community, surrounded by those who know and love him”. 

This was “not something that should be considered a privilege or something that we should have to question as parents when every moment that we have left together as a family is so precious”, they continued.

“We are not looking for special treatment, just equity of care that our beautiful seven-year-old boy would have the same access to end of life care as adults in his community and as most other terminally ill children in the country have,” the letter read.

During the Dáil sitting yesterday, Ceann Comhairle Sean O’Fearghail asked Lowry to table the case as a topical issue next week and said he would guarantee it would be selected for hearing, adding “we will do our best to ensure that there are some of the ministers here from the Department of Health to deal with this because that is not something that should have to be brought on to the floor”.

With reporting by Christina Finn