‘I want no other family to face or go through what we have gone through’

Arlene Devenney and her late father Patrick, who took part in the New Year’s Day swim every year at the Quay Shore in Newtowncunningham

placeholder image — Arlene Devenney and her late father Patrick, who took part in the New Year’s Day swim every year at the Quay Shore in Newtowncunningham

A Donegal woman who lost both her father and sister in less than 24 hours has urged the powers that be to get the north-west in sync with the rest of the country when it comes to having community nurses to administer procedures from home

A grieving family has called on the powers that be to appoint community nurses to administer home care in Donegal.

Patrick Devenney from Newtowncunningham sadly passed away last September following a brave two-and-a-half year battle with pancreatic cancer. His daughter and mother-of-two, Margaret, who had accompanied him on his final trip home to Donegal from hospital in Dublin, tragically died the day afterwards.

They are survived by Patrick’s wife Imelda and children Sharon, Brendan, Maria and Arlene, who has stressed the need for Donegal to have community nurses to administer basic procedures from home where patients can be with their family and in turn ease hospital bed pressures.

The Devenney family at Brendan and Treasa’s wedding in 2017 - Patrick, Arlene, Margaret, Treasa and Brendan, Sharon, Maria and Imelda

With no home care available in Donegal, Patrick spent almost the entirety of his last four months in hospital despite pleas from the family to local representatives, the HSE and private companies to have something in place to enable him to spend time at home.

“This is a personal story for our family but we do feel that Dad spent his last few months in the hospital especially in July and August of last year only to receive antibiotics,” Arlene says. “I know my father needed to be in the hospital in the later stages as the disease had progressed and we always wanted him to receive the best care. I do think my father’s life would have been prolonged if he was able to be at home being well looked after by my mother, receiving antibiotics at home.

“This is in no way a spite at the wonderful people who cared for dad throughout, we just feel the system as a whole needs a change. Being in hospital does something negative to your mental strength and it did have a huge impact on our father. He rarely complained throughout his two and half-year battle with this disease and even in his dark days he always had a funny joke or a good story to tell. But spending months in hospital away from his family, especially mum, was extremely hard on him.”

Arlene with her father Patrick on her wedding day in 2013

During his cancer treatment, Patrick spent one night at Letterkenny University Hospital in late January of last year, treated with IV (intravenous) antibiotics to relieve the blockage from the bile duct. He was being monitored weekly by the oncology unit in Letterkenny and as his tumor markers were going up in March his consultant ordered a PET (Positron Emission Tomography) scan in April.

The results the following month showed some of the lymph nodes had become enlarged. Patrick’s consultant ordered a biopsy of the lymph nodes to confirm if it was cancerous - there were two attempts at this - and in early June learned the biopsy showed only clear results, and his doctor ordered another PET scan to further examine the blood markers.

A recurrence of the infection meant Patrick had to spend five further weeks in hospital from late June and, having tested positive for Covid-19, was moved to an isolated part of the hospital for 10 days. Patrick was getting IV antibiotics three times a day for the infection and had been transferred to the oncology unit in mid-July, which meant family visits were limited.

The Devenney family at Patrick’s 70th birthday back in 2017. Margaret, Sharon, Maria, Arlene and Brendan, with parents Patrick and Imelda

At the time, he felt well and was eager to get home but was unable to do so, because he needed IV antibiotics to keep the infection at bay. He restarted his chemotherapy treatment again and finally returned home on July 30. Patrick was back in the hospital again three days later, August 2, with the same symptoms coming from an infection in his bile duct and was again put on an IV antibiotic to relieve the infection. He never got back to the family home again.

“Dad needed the IV antibiotic to keep the infection at bay but we were advised that there was no community nurse in Donegal to provide this service although it’s available everywhere in Ireland but not in the north-west,” Arlene continues. “Dad wanted to get home so bad. We rang St Vincent’s, where Dad originally had his surgery, to see if they could help with the recurring infection in his bile duct.

“The pressure was on to get dad moved to St Vincent’s at that point as it was the only hospital available to us that specialises in Hepatopancreaticobiliary (the biliary system, which includes the liver, pancreas, gallbladder and bile duct) part of the body.

“We finally got Dad transferred by ambulance to St Vincent’s on August 13 to be reviewed by the team that specialises in Hepatopancreaticobiliary. Dad was out walking the grounds every day feeling strong, waiting on tests that seemed to be put off due to hospital pressures.

"The nurses told us that it was a pity he had to be an inpatient when he was feeling well and the only thing keeping him in was the need to have the IV antibiotic. In the last attempt to get Dad home, he went for surgery on September 13 to have a stent into his bile duct. This surgery did go well but it did not have the desired outcome for Dad and we rushed to get him home when we knew that he was going to die.

Patrick Devenney and his daughter Margaret, who both sadly passed away less than 24 hours apart

“My dear sister Margaret went down to Dublin that Sunday with our mother and Brendan. It was a very stressful few days for our family. Margaret talked to Dad the whole way up home in the ambulance and she told him he was back in his beloved Donegal when they crossed the bridge in Lifford. Dad gave the thumbs up.”

Patrick was moved to Donegal Hospice on September 20 and passed the following afternoon surrounded by his family. Margaret died just less than 24 hours later and father and daughter were waked side-by-side and laid to their eternal rest together following a joint funeral Mass at All Saints Church in Newtowncunningham.

“We still haven’t received the coroner’s report on Margaret’s death,” Arlene continues. “Margaret suffered from epilepsy and although she may only have had one seizure a year, stress and lack of sleep would have brought it on and we do feel she had a seizure that morning she died.

“Dad spent the entire summer in the hospital - his last summer - because Donegal did not have a nurse in the community to provide the service to administer IV antibiotics and even if we could pay for it, the private providers didn’t come to Donegal. Any time at all we got the chance to see him, we did. Dad never spent more than a day in hospital in Dublin without a visitor from his family. St Vincent’s were fantastic in that we could spend the entire day with dad and sometimes even spend the night with him in the ward. That gives me some comfort.

“With bed shortages a common thing to hear about our local hospital, it still annoys me to hear that the northwest does not actively have community nurses that can allow people to stay at home if they choose and get better surrounded by family. There is clear evidence to suggest that patients recover better at home when it is possible to do so.

Patrick Devenney and his wife Imelda

“To know if we were better placed geographically to a major city like Dublin or Galway, my Dad could have spent his last few months at home surrounded by his loved ones. The two weeks before he died was a hugely stressful time for our family. I do believe that things would be a lot different today if he was afforded the same outpatient care as his counterparts living in other parts of the country.

“I feel very strongly that all these lack of services in our health system in Donegal led my family down this path of stress and anguish during July to September and had profound effects on my other siblings. It haunts me to think that if we had been able to let my father spend his last few months at home, my family situation would be a lot different today.

“It’s very upsetting to feel like you failed a parent in his time of need, we promised to get him home but to be told ‘no’ in every direction. We sought help and we were made to feel like you and your family didn’t matter. I want no other family to face or go through what we have gone through and that’s why I have decided to share this story.”

HSE REPLY

When queried on the matter by DonegalLive, the HSE North West responded: “Currently CIT (Community Intervention Team) Nurses are not permitted to administer IV antibiotics in the Home as it is not within their Scope Of Practice. The implementation of IV antibiotics in the Home requires an Integrated team with the Acute Hospital. The administration of IV antibiotic services is not a basic procedure. Nurses must be trained and signed off as competent. In collaboration with Letterkenny University Hospital the plan is that an OPAT (outpatient parenteral antimicrobial therapy) service will be available by Quarter 4 2023. Training has taken place and more Training is planned.”