"Hospital stay on acute chest ward"

My late husband who had multiple physical illness including COPD was admitted to hospital due to heart failure--although this wasn't fully explained at the time....in retrospect just looks amongst professionals and an assumption that "thing were not good". He was on a 6 bedded unit which was very busy with multiple changes of "boarding" patients...waiting for beds in other more appropriate wards....and multiple changes of staff teams (who mysteriously even when they were on shift seemed to be rotated around different rooms rather than giving some consistency of care and the possibility of forming an understanding of the patients individual needs and a person centred relationship).

Individual consultants gave reasonable care....but in the space of 2 or 3 weeks he was seen by 3 consultants "on the same team".....who clearly referred briefly to the notes but didn't speak to one another....or the many registrars...nor in a meaningful way to my late husband or me. There were too many assumptions and only communication when I sought it out (my husband was too ill to really interact in a meaningful way with Drs and consistently asked them to speak to me/explain to me...which they did in a uncoordinated haphazard way....if I happened to be there on a ward round...which I increasingly tried to make sure I was...and I had one conversation in a store cupboard with a junior Dr when I specifically asked to speak to him).

I initated contact with social work about a direct payment application to help me support my husband when he came home. I had experience of this from elsewhere and wonder whether this might have happened if I hadn't.

I was at the hospital for extended periods during the day and was happy to support my husband with personal care, eating and drinking. It was challenging due to physical lack of space....he had urostomy bag collecting his urine following the removal of his bladder 5 years earlier....and this was a cause of anxiety to him unless I was around to support him. I asked about a single room but was told this was allocated "due to medical need" and no further consideration was given to this during his stay. It seemed like a " fait accompli" even though it later transpired that these were the final days of my husbands life and I think he should have been given a room to himself to preserve his dignity and to ensure he was not disturbed by the busyness of a 6 bedded unit. He also had complex health needs which 3 days after discharge resulted in his death at home.

Although most individual health workers "did their best" some were not at all helpful and had a negative attitude. Other were excellent like the specialist COPD nurse with whom my husband already had a positive working realtionship and the urology consultant who provided excellent care when my husband had a major operation 5 years earlier.

Prior to discharge home there was insufficient communication about my husbands condition and ongoing care and medical needs. I was intelligent and aware enough to know he was ill....but no one took the lead in speaking to me about this and I was left to negotiate an array of associated professionals whilst also trying my best to care for my husband. Most importantly no one talked to me prior to his discharge about end of life care or intimated that he may only have a very short time left....I hoped as any close relative would that he would improve when he came home and got rest, care and ongoing support from his GP---who had given excellent care and support for many months. It was only when a district nurse visited the following day That she made me aware of how very ill my husband was and immediately spoke with the GP and with my permission started to put supports into place. My husband died 2 days later. The district nurse was shocked that he hadn't even been provided with an ambulance to bring him home in comfort and that we had been left to struggle to get him in and out the car and into our bungalow. The social worker phoned me a week after he died to discuss the direct payment application.

The "system" of health care both supported and failed me and my husband. he had some excellent care in the past but it could have and should have been much better towards the end of his life.