"Poor end of life communication and support"

My partner had MND for five years and the type was Progressive Muscular Apathy. He spent 4 days in  Neurology Ward 53 in November 2021 learning how to use a Non Invasive Ventilator to improve his breathing. He was well treated in this ward, nurses understood his condition and treated him accordingly. I could come and go as I pleased and was allowed to sleep in a bed beside him, I did this a few nights, on the nights that I went home he was always fine in the morning. The pressure and effects of Covid were reduced in the Hospital, things were getting better.

Due to the progressive, wastage of muscles in MND the last two years had been a struggle and the previous six months required me to care 24/7.  Sleep deprivation was horrendous for us both. He could not move from the neck down, severe pain from joints, constant painful leg cramps, constipation, digestion, fear of choking reducing what foods he could take, poor sleep and nightmares. He also had other health issues,  atrial fibrilation and an enlarged prostrate which affected him. His voice was weak and he  was totally dependent on others for everything and also at the mercy of everybody.

The G.P admitted him to hospital because of a chest infection and initially after a 10  hour wait he was in ARU5, where again he was treated very well by the nursing staff. He was moved to Ward 7C. I have already had a meeting with the respiratory doctors and the neurologist as I was dissatisfied with his care in the ward and the lack of communication and advice. This meeting identified issues with the nursing staff and I wanted to meet them. I have spoken to the respiratory nurse who has checked that this information was passed on but they have ignored the request.

The nursing staff knew he had MND but did not take this into account when treating him. I stayed with him 24/7 apart from three evenings.  I found out the next day, though the nursing staff assured me he would be checked every 30 mins as he could not shout or press a buzzer, that he was ignored. First evening a request for an additional pillow was refused, we never saw that nurse again. Another night his mask was slipping and according to the nurse he did not want it on.....he needed it.

In early December after two episodes of struggling to breath and rapid heart beats, a doctor who I had never seen before said he was dying. I was shocked as I was never told to expect it. He was quickly sedated and put on nil by mouth which I found totally barbaric and cruel. The second day I put water from my fingers onto his lips and he nearly bit my fingers off trying to drink, he was dying of thirst. I requested sponges and a spray to help him. Neither the doctor or the nursing staff had bothered to check him, they should know the effects of oxygen.

I feel after all the care we received from the support groups in the previous two years his last days were spent in agony and terror. No co-ordination between respiratory and neurology to ensure he was treated sympathetically. God help patients who have nobody to help them.