"Home is the best place to die."

What I liked

I liked it when a care assistant came up and talked to us and tried to comfort my daughter. I liked it when people signed their names legibly in the notes, thereby acting in a professional manner. I liked it when the tea person came round.I liked the canteen upstairs and the parking in the golf club where you can park as many times as you like in the same day for £3. I liked it when the chaplain gave me some important information and when the chaplain came to pray with us.

What could be improved

1.Visiting hours for families of people who are dying. 3 hours daily is inhuman and I was too distraught to try and negotiate. The only time I asked, the manager said they would rather I would not come as they had things to do on the ward.I said, don't worry. 2.Honesty and openness about the day to day health of my husband who was very confused and agitated because he was alone and could not remember where we were, and could not remember anything about his treatment. It would have been better if nurses had offered information without being asked & been truthful and precise. If everyone sticks to the truth, the information is not going to conflict. 3.It would have been helpful if nurses had cared about the family. In end of life care this is essential. I think they should have training 4.Call "palliative care" "end of life care" because that is what it is.This is part of being honest,and helps you know what is going on. 5.Don't inflict "The Liverpool care pathway" with all its unecessary drugs and withdrawal of fluids as routine. It is more about ticking boxes than actually caring for someone. Not all nurses are comfortable with it anyway. 6.Tell doctors to be scrupulously in answering every question and never upset the family by appearing secretive about the drugs. 7.Give out scrupulously accurate leaflets when there is not time to explain. e.g. on death rattle/ pulmonary oedema, each drug that is offered, fluid management. The management are helping to make improvements and I shall be contacted in Feb as to what they have done, they spent a long time listening to me, and justifying the visiting hours for hygiene reasons. Mayday has double the visiting hours so should have double the infections.They have even gone so far as to be prepared to read a book about immunity and relationships, and relevant articles. I am sorry that I am not in the 96% of very happy customers. PALS has made a lot of effort to help.

Anything else?

I was told that there had been no other complaints about visiting on Abinjer, so I must be the only one then. Why did the 2 doctors I dealt with over the end of life care both put that I was anxious in the notes. One of them refused to tell me which drugs he/she was thinking of giving my husband who always insisted he had no pain, and was unconscious anyway, because I "did not have the medical knowledge to understand". This caused me a lot of distress, and did not engender trust or allay any fears. The government did a survey about where people wanted to die, and most said home. It would be good if they could send people home to die.ComplaintsCanteenCar ParkReceptionSignsPalliative medicineCare assistantsDoctorsVisiting timesDeath and dyingPalliative careCommunicationOpening hoursWardNursing staffInfectionsAttentivePatient careHygieneLeafletsManagement