Last phase of life, experiences in North London

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Summary of report content

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.

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General details

Report title 
Last phase of life, experiences in North London
Local Healthwatch 
Healthwatch Barnet
Healthwatch Camden
Healthwatch Enfield
Healthwatch England
Healthwatch Haringey
Healthwatch Islington
Date of publication 
Sunday, 31 December, 2017
Date evidence capture began 
Friday, 1 September, 2017
Date evidence capture finished 
Sunday, 31 December, 2017
Type of report 
Report
Key themes 
Access
Administration
Admission
Booking appointments
Cleanliness hygiene and infection control
Communication between staff and patients
Consent to care and treatment
Continuity of care
Diagnosis
Engagement
Health inequalities
Holistic support
Information providing
Integration of services
Interpreters
Lifestyle and wellbeing
Medication
Quality of care
Quality of treatment
Referrals
Service delivery organisation and staffing
Staff attitudes
Staff levels
Staff training
Support
Waiting times and lists for treatment
Other information of note about this report 
BME
Healthwatch reference number 
Rep-6873

Methodology and approach

Was the work undertaken at the request of another organisation? 
Yes
What type of organisation requested the work 
Other local body
If this work has been done in partnership, who is the partner? 
North London Partners
Primary research method used 
Unstructured Interview
User stories
How was the information collected? 
Outreach
If an Enter and View methodology was applied, was the visit announced or unannounced? 
N/A

Details of health and care services included in the report

Primary care services 
Diagnostic and/or screening service - single handed sessional providers
Secondary care services 
End of life care
Social care services 
Respite care
Community services 
Community healthcare and nursing services
Continuing care

Details about conditions and diseases

Types of disabilities 
Multiple
Types of long term conditions 
Other
What type of pregnancy or maternity themes are included in the report 
N/A

Details of people who shared their views

Number of people who shared their views 
46
Age group 
All people 18 and over
Gender 
All
Ethnicity 
Mixed / multiple ethnic groups
Sexual orientation 
Not known
Does the information include public's views? 
No
Does the information include carer's, friend's or relative's views? 
Yes
Does the information include staff's views? 
No
Types of health and care professionals engaged 
N/A
Does the information include other people's views? 
No
What was the main sentiment of the people who shared their views? 
Mixed

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
No
Does the information contain a response from a provider? 
No
Is there evidence of impact in the report? 
No
Is there evidence of impact external to the report? 
Yes
What type of impact was determined? 
Implied Impact

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
 
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
 
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.