Crisis in end-of-life care provision

A Derry woman said she was repeatedly pressured by Altnagelvin Hospital staff to take her elderly, seriously ill mother home because they “needed the bed”.

The woman, who wished to remain anonymous, said she decided to speak out about her recent experiences in the hope that no other family would have to face the same situation.

“I feel they put Mammy out of hospital with no real care,” she told the Derry News.

“I told them repeatedly that a domiciliary care package had not yet been put in place for Mammy, but I felt no one was listening to me or my concerns.

“I felt unheard and dismissed. It was as if the bed she was in was more important to them than Mammy because she was in end-of-life care.

“They knew we would need a hospital bed at home to make Mammy comfortable but that didn’t seem to matter. No one told us how to go about getting one.

“We are a small family and we had all been caring for Mammy round the clock prior to this. But it seemed to me, in their haste to discharge her from hospital, nobody there really cared that we weren’t medically trained to administer medication.

“No one spoke to us about what support we might need in terms of an overall treatment plan; the possible intervention of community nurses and Marie Curie nurses; who we should contact in the event of an emergency; or mammy’s pain relief and how we would obtain it,” she said.

Clearly upset, the woman said her mother had been living with a COPD diagnosis for a number of years and had taken very unwell a fortnight ago.

“I phoned the doctor, who came out to the house and immediately arranged to have her transferred to Altnagelvin by ambulance,” she said.

“We sat in the emergency department for more than 28 hours before Mammy was admitted to a ward and got a bed. Prior to this Mammy had been given a bed in the casualty cubicles. When she was in A and E, Mammy was swabbed and they came back and told us she had Covid, pneumonia and fluid on her lungs.

“When she was eventually admitted to the ward she was put on numerous antibiotics because they could not get the infection level down.

“Three days later, I received a telephone call from a member of staff saying Mammy was ‘fit to go home’. I was very taken aback and asked if they were sure, because she still seemed very poorly. Mammy was not eating. She was receiving fluids intravenously as well as the antibiotic.

“I was told they had one more test to do with Mammy, which involved the occupational therapist taking her for a walk, and then she would be fit enough to go home. However, when the occupational therapist took her for a walk, Mammy’s oxygen levels dropped dramatically. She is on oxygen 24/7 and, following this, they had to increase the dose from 1.5 to 9 to get her up to any level of normal breathing. They knew that day she was definitely not fit to be discharged.”

The following day, the woman said she received another telephone call to say her mother was fit enough to come home.
She added: “I was told in what I felt was quite an aggressive manner that my mammy was fit to go home.

“They repeatedly referred to her domiciliary care package. I tried telling them over and over again that Mammy did not have a domiciliary care package set up.

“They just kept saying mammy was fit to go home.

“I just felt I was banging my head against a brick wall. I felt they were not listening to me. I was telling them there was no care package in place. I think they just wanted her out of the bed and out of the hospital.

“We weren’t fully prepared for Mammy coming home at all, but I don’t think my concerns were being acknowledged or heard by the hospital. They just wanted the bed empty.

“I definitely don’t think my mother was fit to come home. I know she wanted to come home. It was Mammy’s wish to come home but I don’t think she was fit enough to come home,” said the woman’s daughter.

“Someone phoned me from the hospital later that day, and when they heard Mammy had no domiciliary care package, they kind of changed their minds about discharging her.

“They put me through to someone in the hospital and he organised for carers to come once a day, starting four days after her discharge. That did not happen. Mammy will have been at home 11 days by the time her carers are scheduled to come in.

“Thankfully, we did get a hospital bed for the house and Mammy was discharged and came home in an ambulance two days later. I still do not think she was fit to be discharged from the hospital.”

In desperation, the woman said she had contacted her GP about her mother's pain relief only to be told the practice could not intervene as she had not been fully discharged from the hospital at that stage.

“In the hospital they cut Mum’s pain relief down to half a paracetamol because she had gone down to just five stone. But it was not adequate. It was not touching the sides of her pain.

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“Her GP prescribed a very light oral morphine, which we were giving Mammy every four hours by syringe. It was helping her a bit but she was still very ill the following day. She was very agitated with the pain and we could not get any fluids into her.

“The next day, I phoned the out of hours service because Mammy was very distressed and I knew she was in terrible pain. I didn’t think the oral morphine was enough.

“As a family, we just felt we needed more help and support. We needed Mammy to at least be comfortable in her own home. The out of hours doctor phoned me back and said Mum was coming to end-of-life circumstances and that they would prescribe the drugs which would be administered by the Marie Curie nurses who would come to the house.

“I went to Altnagelvin, with proof of identity, to pick up the prescription. Then I went to the chemist, who told me they didn’t have all of the drugs on the prescription - they gave me two out of the three items and said I would have to go to another branch for the rest. I did this, but was told at that branch they didn’t have the drugs, either. I then went to a third chemist, who gave me the third item and said they would have the fourth item three days later.”

The woman said she was under unimaginable stress running around the city trying - and failing - to obtain pain medication for her mother from three different pharmacies.

“Given how ill Mammy is, I would rather have been spending time with her and the rest of my family than running to different chemists and still not being able to get the prescription filled.

“I just wanted to be there with my mammy, and with my family, at this emotional time.

“We eventually got the medication and we are now waiting on the first visit from the Marie Curie nurses.”
She added that a system should be put in place for families with relatives requiring end-of-life care to get the drugs they need without having to spend valuable time away from their loved one.

“You want to be there with your family members at this time,” she said. “It is not a nice situation to be in.

“I know Mammy wanted to come home and be at home, but I wanted her to be in a better situation - at least coming home to be comfortable, which she definitely is not.

“She is in agony. She is putting on a brave face in front of us. She doesn’t want to show she is in pain. She was always a proud woman and would never admit if she’s in pain.

“I feel they put her out of hospital with no real care. No district nurse coming, no nothing. We are caring for Mammy but we have no medical training. And we are doing this while also caring for another family member.

“When you are talking about end-of- life care, the system is broken - unless you are in a hospice, where end-of-life care is very much catered for.

“If I had not phoned the out of hours service, how would I have known Mammy was at the end of her life? How are families supposed to know what to do or where to go?

“I hope no other family ever has to go through what we have been through in the past number of weeks.”
The woman said although she was relaying her family’s personal experience, she understood what happened to her mother was “the result of the unbelievable demands being placed on NHS staff at the minute”.

“They are backed out the doors of accident and emergency,” she said, “and they’re coming under fire from everywhere.

“It is people like my Mammy who are having their care compromised as a result.”

Derry News asked the Western Health and Social Care Trust for a comment on this situation.

A spokesperson said: “Due to patient / client confidentiality we would not be responding to individual cases.”

“The Trust works in partnership with family and carers in respect of the care and support arrangements for individuals using our services.

“If a patient/client or their relative has any issue in relation to their treatment or the service they have received, we would encourage them to raise their concerns with the clinical team involved in their care or through the Trust's comments and complaints system - the Patients' Advocate Office. The Patients' Advocate Office can be contacted on (028) 7161 1226. All complaints received are investigated promptly and a response issued to the person.”

Due to the tight deadline the Trust was unable to provide any further comment.