"Let down during my husband's final days"

My late husband had terminal cancer and mid May this year we were advised he had months left to live. He declined very rapidly and on the bank holiday weekend at the end of May he was delirious with pain, unable to swallow his meds and started refusing food and water. He was in a very confused state and his reality was gone.

Although I didn’t want him to be taken to A&E, on Sunday I called 111 to try to get him some help, and were advised a doctor would call. I expected a visit but it was a phone call so the doctor couldn’t see the state my husband was in. All they did was increase his pain meds which didn’t really help as he was struggling to swallow them. 

On the bank holiday Monday I called the palliative team at the City Hospital, who tried to help us, but at that point did not have a bed, so just gave us some advice on pain medication.

Later we had a visit from a district nurse and I begged her to help him, to get him admitted to the city hospital. She tried by calling 111 but the doctor she spoke to refused saying we had to give the new pain meds a chance to work, even though my husband was struggling to swallow them and was too delirious to understand much. She gave him no health checks and left us to it once the 111 doctor finished his call.

By early Tuesday morning my husband was in so much pain he couldn’t cope with it. He struggled to get out of bed with me at first trying to settle him but then when he insisted on getting up I tried to help him but he was in so much pain it took us nearly half an hour. By the time he got up he was comatose with pain and couldn’t talk, walk or communicate. It was then I knew I had to call 999 even though I really didn’t want him going through A&E, as there was nothing more I could do for him. I tried to get him to move or sit but he was unable, so I just held and supported him until the paramedics arrived half an hour later.

They were amazing and gave him all the health checks the district nurse had not done the day before. He was tachycardic. They even called the palliative team and managed to get him admitted to Hayward House. From that point on my husband had the best care possible from the team there, and finally got the escape from pain he needed, and passed away 5 days later.

I feel very let down by the health care service we were given out of hours and feel robbed of a meaningful goodbye with my husband. It was a very traumatic experience I still have flashbacks from. Those final hours with my husband in our home were dreadful and I’m struggling to get past that to mourn him properly.

I think in hindsight I should have called 999 sooner but in his confused state he would have been very traumatised by the experience of A&E. The care available out of hours completely failed us.

While in Hayward House the first day, I got a call from a doctor at our surgery wanting to know where we were as they had come to see my husband. No one had told us of the visit and anyway it was too little too late. We had no real care given from the surgery. They never checked up on him, or visited, or reached out to us. The only interactions were for prescriptions.