A Co Antrim nurse, who lost her elderly father to chronic heart-failure four months ago, is backing calls for a new palliative care strategy for Northern Ireland to be given “top priority” and delivered with adequate funding.
Marie Curie is calling for a 10-year strategy – similar to the Northern Ireland Cancer Strategy published by the Department of Health in March this year – to be urgently approved by the Executive in order to prepare resources to meet the predicted need.
Linda Copper's father Patrick Kelly died on June 5th this year at his home in the Shantallow area of Derry, aged 85.
Read more: Newtownabbey beautician supporting people through their hair loss journey
Recalling her own family's personal experience with palliative and end of life care (PEOL) Linda, a nurse from Newtownabbey, said: "Our dad had been ill for many years with various health conditions, including heart-failure following a heart attack almost 20 years earlier, but in the last year of his life his condition slowly deteriorated.
"He lost weight, had a poor appetite, mobility decreased and experienced what he thought were side-effects from his medication. However, in hind-sight he was displaying the symptoms of chronic heart-failure and his medication became less effective.
"Through all of this his mind remained sharp and he held out hope that eventually the medications could be changed to control these symptoms as he wanted to live until he was 100.
"In May 2022 he was again hospitalised with distressing symptoms of vertigo and breathlessness and following investigation his consultant explained to him and us that there was nothing else that could be done to control his symptoms, he was moving towards the end of his life.
"This was a very distressing and emotional time for everyone, but dad understood and made his peace with it. We were told it could be days or weeks but probably not months."
All Mr Kelly wanted now was to go home and he was added onto the palliative care register.
"Palliative care quickly became end of life care for dad," his daughter explained.
"We were preparing for him to come home, the hospital bed was in place and we discussed plans amongst the family. Prior to discharge we were given very little information regarding how palliative care worked, in fact we had to seek out the information for ourselves."
Mr Kelly was discharged home four days before his death in early June.
"He arrived home in pain so we then had to contact OOH (out-of-hours) to speak to someone to get him pain-relief urgently," Linda explained.
"Contacting OOH consists of phoning OOH and providing basic details and then waiting for a call back, which can take some time, from the clinical co-ordinator who then advised that either the Marie Curie nurse or GP would attend.
"No timeframe was given. Of course, because dad was in so much pain we assumed that this would be an urgent call and help would arrive soon.
"The GP phoned dad’s house and said that a prescription for morphine would have to be collected from OOH and filled before he arrived to administer it.
"He also said that due to dad’s weak condition administering morphine may cause him to pass away. Our family were not all in Derry at this time and we were distraught that he might pass away without us having had a chance to see him.
"Due to Covid-19, visiting had been restricted in the hospital so those of us not in Derry had to then travel home whilst in a distressed state. Dad eventually got his morphine 1.5 hrs later and survived it."
Linda added: "Over the next four days we had to attend OOH to collect prescriptions on five further occasions and then have the prescription filled. This meant that we had to leave his beside to do this and visit several pharmacies to get the drugs.
"All in all dad was only home for less than 100 hours before he died and for 10 of these hours we weren’t with him. What would you do if you only had 100 hours left? You would want to be with the ones you loved.
"We were fortunate as a family that we had access to cars and enough of us that dad wasn’t left alone. Again, we were fortunate that we could afford to use the car to collect the prescriptions and the drugs.
"What happens to those people who do not have a family or don’t drive or can’t afford a taxi? Having the prescriptions filled involved visiting several pharmacies as not all pharmacies had all of the required drugs. You can’t split the prescription and get one drug here and another there.
"One night over the weekend, due to exceptional circumstances, there was no Marie Curie nurse available. The nurses who cared for dad in his final days were caring and compassionate but it was evident that they were stressed because they couldn’t deliver the care that they knew he needed.
"The PEOL Living Matters, Dying Matters strategy talks about a holistic approach to individualised care but this is impossible to deliver when you have to travel up to 30 miles between patients to deliver the basic care.
"There is little time for emotional support for the patient and family when your next patient is waiting for you, possibly in pain too."
Recalling her dad's final hours, Linda said: "On Sunday 5th June, it was finally decided that dad needed to have a syringe driver for pain relief, the drugs protocol stated that a patient had to receive morphine three times in 24 hours before a syringe-driver would be considered.
"Whilst, I understand the reasons for protocols, this protocol was very rigid and not flexible to the needs of the patient, our dad. None of these services or indeed the staff started out with the intention to cause obstruction/delays, however, the system was set up in such a way that these were inevitable."
Linda said easy access to pain relief medication and having timely support from a healthcare professional out-of-hours and over weekends during her father's illness was necessary.
She recalled: ‘‘Every service and staff member that we encountered, although professional, caring and compassionate, didn’t seem to realise how their role was key in delivering the care needed to the patient, our dad.
"There was no real sense of a joined-up approach, just different cogs all doing their thing but not really engaging.”
Linda has now added her support to Marie Curie’s call for a new palliative care strategy for Northern Ireland.
The leading end of life charity says that by 2040, Northern Ireland will face a 30% increase in demand for people requiring end of life care in the community.
“There is a great urgency for a new strategy for PEOL care particularly now post Covid-19 where new challenges, gaps in the current services and care need have been identified,” she added.
“The strategy needs to be created with input from patients, families, and carers to ensure it delivers what the patients, like my dad, need. Its focus needs to be on working together for a common purpose.”
Joan McEwan, the charity’s Associate Director of Policy for Northern Ireland, said a strategy is “long overdue” and has asked MLAs to pledge their support for a new one.
“Our last strategy was published more than ten years ago and sufficient resources were never committed to fully delivering it,” she said. “A decade on and a pandemic later, we are in a much different landscape.
“We are faced with an aging population who will need specialised end of life care along with people living with a range of terminal illness such as cancer and dementia, who should have a choice of where they want to die, safe in the knowledge that they will get the care and support they and their family need to make their last days as comfortable as possible.
“But approving a healthcare strategy like this is just the first step. It is a top priority and we need it to be fully delivered and fully funded. We are calling on MLAs to show their support and then we need them to deliver it for the sake of us all.”
READ NEXT:
- UFU president's pride at wife's key role in providing end of life care
- Daughter pays tribute to Belfast dad 'Papa John' who died from cancer a year ago
- NI woman on key role palliative care played after mum's cancer diagnosis
West Belfast mum on how cancer diagnosis felt like a 'bomb' going off in her life
For all the latest news, visit the Belfast Live homepage here. To sign up to our FREE newsletters, see here.
