"My brother who died from cancer"

Good: 

1. Hospice care (inpatient and in community) was excellent; holistic and empathetic care was really consistent.  

2. Palliative care (nurse and doctor) in the hospital were amazing, they were only people who told me what was happening when he was in hospital.

3. Some nurses in the Cancer centre were amazing.

4. The first time he was diagnosed: the dr were very quick getting him surgery and starting treatment; all the surgical team were spot on, very efficient and care was great in the Belfast City Hospital.

Could have been better: 

1. In hospital: he went for ERCP, I didn't hear from him for two days, found out three days later he got pancreatitis after procedure and was very unwell.  I was NOK and they never rang me to tell me to discuss or inform me of a change in his condition, they put a DNAR on him that night while he was unconscious, also wasn't discussed.  There was no update on his condition in general, ended up only the palliative care nurse (after a week of being in hospital) finally told me what was happening.

2. He went septic when in hospital (on a separate admission): staff member updated me with the wrong information; I realised the gent was not connected, it was dripping onto the floor; I turned up during visiting hours with lots of medics in room and I was not once contacted.  My brother was terrified, I should have been there.  I am annoyed I wasn't contacted as NOK.

3. It was difficult to coordinate all the specialities in the community.  I found they were really disjointed, I had to phone all of them separately to get things done, they didn't talk to each other: district nurses; hospice; social worker; physio; home oxygen; home help.  For example: on the day he died the district team pronounced him dead, and a few hours later the carers from home help came to give him a wash.  

4. He was choking on thin fluids but was very distressed as wanted a drink.  I asked the district nurse for thickening fluids, district nurse refused as he would require a SLT review.  So when I asked what if he asks for a drink, they said go ahead and give but if he choked it would be my responsibility.  They put in a referral for SLT, SLT arranged.  The SLT appointment was  scheduled for four hours after he died.  

How did you feel about the care?

There was some really good care; some not so much.