Local family calls for a dedicated care co-ordinator for hospitals

By Mary Dennehy

A FAMILY with a rare genetic disease that has sadly taken the lives of a number of loved ones last week took the first steps in providing a support group for families experiencing ongoing emotional medical trauma – as they await for the HSE to listen to their calls for a dedicated ‘family care co-ordinator’ to be introduced into hospitals nationwide.

Last August, The Echo spoke with Sandra Collins who lost her mother Pat, her sister Joanne and a number of family members to a rare genetic disorder called Von Hippel Lindau (VHL).

Passed down through the generations, VHL is an inherited disease that attacks multiple organs through the growth of tumours and, in the Collins family, the tumours predominantly attack the brain, kidneys, stomach and pancreas.

Alongside a number of male and female relatives, Sandra and her two sisters Joanne and Edel were also diagnosed with the disease, for which there is no known cure, with Joanne passing away last February at the age of 44.

Speaking with The Echo, Sandra, who grew up in Jobstown and now lives in Ballyfermot, told The Echo that her family are patients of Tallaght Hospital – where the doctors and nurses “go above and beyond medically”.

However, she feels that a ‘family care co-ordinator’ needs to be introduced into hospitals nationwide to support families like her own who are regularly visiting hospital due to a long-term illness or genetic disease.

Alongside providing support, the care co-ordinator would also link families in with existing services in the hospital such as counselling, chaplaincy and social and primary health care.

Sandra, who was a PE teacher in Mount Seskin Community College in Jobstown, said: “The uncertainty around this condition, the loss of so many family members and trying to care for those who are sick is really traumatic.

“For families with a rare disease like this there is little to no supports put in place to help with the emotional trauma that comes with suffering from a disease like this, so we have taken the first steps ourselves.”

With support from Tallaght Hospital, Sandra and her family organised one of the first ever support groups in Ireland for VHL, which was held in the hospital last week and saw families gather from as far away as Sligo, Mallow and Drogheda to meet and listen to guest speakers from America, Joyce Graff, one of the founders of the first ever VHL alliance in the States, and counsellor Mike Kelly from the Irish Kidney Association.

Sandra said: “We hope this is just the start and we plan on holding more information and support groups.

“We will look at the impact of these supports on families and bring those findings to the HSE and the Ministerfor Health, who will hopefully listen to our calls for more structured emotional supports for all families attending hospitals regularly for any genetic or hereditary disease. 

She added: “Other countries have a staff member assigned to families like ours in each hospital and it’s time that Ireland followed suit.”

The day was also made possible thanks to students from Mount Seskin Community College, who helped out.

When contacted by The Echo, the HSE said that the questions put to them about a dedicated family care co-ordinator was “too broad” and that it varies from hospital to hospital.

A spokesperson for the HSE said that there are support services in all hospitals but that they do differ.

The HSE did not confirm if it intends to take on board calls for a family care co-ordinator to be assigned to each hospital.