"My cousin's end of life care"
About: City Health Care Partnership CIC / End of life care City Health Care Partnership CIC End of life care Hull HU5 3HP Dove House Hospice Dove House Hospice Hull HU8 8DH Hull Royal Infirmary / General surgery Hull Royal Infirmary General surgery HU3 2JZ NHS Hull CCG NHS Hull CCG HU1 1NE
Posted by Sutts (as ),
My cousin suffered from Huntington's disease, and was in the final stages. He was admitted into hospital as he was bleeding from his behind. He was left in AU for 4 days with a catheter fitted, but no one explained why they had fitted it. On numerous occasions because of his involuntary movements it would get caught around his legs and he would pull on it causing excruciating pain.
He was admitted with the same condition on 3 more occasions. He had pulled out his peg whilst in hospital and they tried to reinstate it but couldn't. He was starved for a week and had a procedure to fit a nasal feed, only to be taken out the next day as they had fitted the wrong one.
An incident report was filed against the hospital and the nursing home he was in. I had to feed him in the end, to prove he could swallow. The hospital didn't believe me or the nursing home, until they saw it for themselves. He was then discharged with palliative care supposedly in place, as he would not be readmitted and his future care would take place in the nursing home.
The home contacted palliative care and was told they would not become involved until end of life. Shortly after he became very poorly, it was a bank holiday weekend, and basically he was left to suffer due to staff shortages across the board. A palliative doctor (who was amazing) came on the Tuesday and he was admitted to the local hospice on the understanding that another weekend was coming and he had already suffered too much.
I had read a story in the local newspaper about the care on a weekend being very poor and this swayed our decision to admit him into the local hospice, as we couldn't bear him any more suffering. We made the right decision, as the hospice was so caring, and supportive and most of all respected my cousin and gave him his dignity at his end of life. This care should be available in the community and the story that led me to write this is that please ask the question why it is not?