Last phase of life, experiences in North London

This report and the research which informed its findings was part of a programme of engagement on the North London Partners Urgent and Emergency Care programme. North London Partners is the sustainability and transformation partnership for North London, formed of health and care organisations from the five London boroughs of Barnet, Camden, Enfield, Haringey and Islington.

The five local Healthwatch in the North London area are collaborating to promote citizen engagement in the work of the partnership. This includes an extensive programme of engagement on Urgent and Emergency Care, led by Healthwatch Camden. The finding in this report reflect one to one conversations with eight people from Barnet and nine people from Camden. There were also three group interviews, one with five older African people, one with 10 Somali women and one with 14 carers from Barnet.

The key finding from the report are that: once there is recognition that the last phase of life has been reached, support is generally good, and hospital staff at both Barnet General and UCLH were praised for their skill, care and compassion but that too often this recognition came very late. For respondents from BME communities, late diagnosis was often cited as a problem, several felt that their loved ones had been fobbed off by GPs, so that cancers were advanced before a referral to secondary care was made.

For some, getting the right community services to help someone die at home or in a homely setting was problematic. In some cases, the lack of care workers who spoke the same language as the dying person was a barrier. Having staff understand specific cultural issues around death was important.

Good experiences included the hospital removing foreign objects such as cannulas and catheters and giving the family time and privacy to clean the body, or the staff at Jewish Care reassuring the family about the timetable for burial.

Bad experiences included a family being left at home with no support and the detritus of death around them, or a staff member of the opposite gender being assigned to clean the body. These things caused intense upset.

Among the African people spoken to, the role of hospices was not well understood, and some reported having no information about the palliative care available. In almost all cases, the biggest issue was staff awareness and attitude, not the actual nature of the service on offer.