Continuity of care: a granddaughter's story

Over the past 20 years, my 92-year-old grandmother has endured the progressive stages of Parkinson’s disease. She is now dependent on my 93-year-old grandfather (her main carer) and others for all the activities of daily life.

She has had many hospital admissions, almost always due to problems swallowing, which have meant she requires an intravenous drip to take fluids for short periods. When in hospital she has often become confused or delirious and her condition has worsened, entailing a longer stay. We have tried to ask community nurses to provide the necessary intravenous drip at home to avoid an admission, but the local community nurses are not trained to provide this.

She has had two periods of admission this year. During both periods we found the nursing care to be erratic, and communication between nurses and doctors to be poor. My grandmother had a different nurse each day, even though nurses she had become a little more familiar with were still working on the same ward. The timing of drugs, essential in Parkinsonism, was poor. When the paper drug chart ran out of space for new dates it took nearly the full day for a new chart to be started, causing worry that the drugs due in the interim had not been administered properly. On one occasion, I had to stay late at the hospital to make sure my grandmother received her evening drugs so I could call and reassure my grandfather.

During the first admission, her delirious state meant my grandmother knocked her legs on the bed bars causing bruising and eventually a large haematoma and necrosis of the skin. We were told that no padding or other solution was available. The wounds took six months to heal and required daily, then thrice-weekly, community nurse visits and expensive dressings. We have since seen padding to bed bars used elsewhere and learned (from consultants in the same hospital) that best practice would have been to nurse her in a low bed without bars.

During the second admission, an early discharge failed within 24 hours, possibly due to inadequate medication to quell her delirium. The process of discharge and readmission caused great distress to both grandparents. They were forced to wait in the discharge lounge for about six to seven hours with no information as to when they might be able to go home. The following morning, realising my grandmother would need to be readmitted as she had again become delirious, my grandfather called the GP, who told him to call the hospital. He spoke to an administrator who said that a consultant would call him back, but several hours later, when the consultant called, my grandparents were already waiting in A&E. Although it was clearly a failed discharge, my grandmother had to go through a lengthy process of tests before she was admitted to a bed late in the evening.

My grandmother was moved twice in the first couple of days. The second move was carried out at 4am. Agitated on being woken, she pulled out her feeding tube. Her dentures were lost in transit and could not be located despite us repeatedly going to ask staff at the ward she had come from. The lack of dentures left her unable to communicate and increased her difficulty with eating. She developed aspiration pneumonia, which could have been in part due to the lack of dentures.

The pneumonia kept my grandmother in hospital for almost a month. By the time she was discharged she was very weak and came home under the palliative care team.

This seemed to improve care co-ordination, in so far as when she was discharged she bypassed the discharge lounge and the ambulance team took her straight from the ward to her bed at home.

The palliative care team instructed the family not to try too hard with feeding and medication regimes and not to get my grandmother out of bed, but my grandfather didn't agree. He acquired replacement dentures and mobilised her. Two months later she could walk a few steps with help, and enjoyed celebrating her 92nd birthday with friends and family.

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