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Written by a NHS patient
11th September 2025


My dad was admitted via A&E (999 ambulance). He was in the latter stages of Parkinsons with urinary retention. My brother and myself live on the South Coast (W Sussex & Hamphshire) and were unable to visit until 4 days later. They had not managed to catheterise him and, more concerningly, were monitoring his fluid intake by the level of his water jug. HE WAS UNABLE TO SWALLOW so although he was wetting his mouth the water was running out at the side and thoroughly soaking his pillow and gown down the back, which he was left to lie in. When, with our persistant requests, they did catheterise him his urine was as dark as black coffee, which we commented on prompting the nurse to get consultant advice. Each time we visited over the next few days his mouth was full of the porridge they had attempted to feed him with in the morning even though it was midday when we arrived. HE COULDN'T SWALLOW so why did they persist in this diet. His mouth had not been cleaned and he was uncomfortable. He was in that state for 3 weeks. Unfortunately, due to work and family committment we had to go home for a week and when we returned he had deteriorated to end of life "care". We were so lucky that the respite unit onsite (Peddars Way) had a bed for him as they truly gave the sort of care anyone would wish for for their loved ones. Unfortunately, we now live with the memories of the acute lack of care and communication that he/we received in the weeks leading up to his death. We expressed concern to the ward sisters (he moved through 3 wards before going to Peddars Way) and the main response back was to say they are understaffed. I wrote a complaint to PALS at the hospital and they responded by sending the ward matron to see me in Peddars Way. I would have expected PALS to investigate themselves and report back to us as, although the Matron was really very nice, she will always have a biase to protect the staff she manages. Please, please, please QE do something to protect future patients who are too vulnerable to communicate their needs and treat them with the dignity and care that every human being deserves.

Recommend
Dignity/Respect
Involvement
Information
Cleanliness
Staff
Safe