How using secondary data sources can enhance our understanding of end of life care Nicola Bowtell Julia Verne

Talk overview Background Methods Results and brief introduction to the compendium How can we start to use this data – a case study approach Conclusion

Background History behind indicators National indicator (N129) –‘The percentage of all deaths that occur at home’

Place of death: proportion of deaths in males and females in each age group in England, 2005–07 Source: South West Public Health Observatory from Office for National Statistics data

The compendium: Objectives Raise profile of End of Life Care (EOLC) Help identify variations a inequalities in quality of EOLC Monitor progress in the implementation of EOLC Enable commissioners to rapidly undertake needs assessments Provide the public with information to make informed choices around EOLC

Compendium of data sources: examples of data sources available

Compendium: available data sources 7 ONS HES NCPC Hospice Information Service Uptake of tools GSF, PPC, LCP Innovativ e practice QOF, EOL registers Surveys of public attitudes Complaints Marie Curie nursing uptake by PCTs Local Authorities* NCIN* Police* Funeral Directors * National audits Social care* Nursing & Care homes Coroners, Ministry of Justice Funding Prisons* Ambulance Trusts* A&E*

Methods Systematic review of data sources –Relevance –Coverage –Temporality –Timeliness –Completeness –Representativeness Development of a web-based tool

Compendium of data sources: topics covered Carers Dementia Demography Emergency admissions Hospice care Hospital care Life expectancy Mortality Place of death Primary care Residential and nursing care Social care and home help Sudden death

Factors related to illness Non-solid tumours – HOSPITAL Long length of disease – HOME Low functional status - HOME Personal variables Patient’s preferences - HOME Individual Factors Demographic variables Good social conditions – HOME Ethnic minorities - HOSPITAL Environmental Factors Healthcare input Use of home care – HOME Intensity of home care – HOME Availability of inpatient beds – HOSPITAL Previous admission to hospital – HOSPITAL Rural environment – HOME Areas with greater hospital provision - HOSPITAL Social Support Living with relatives – HOME Extended family support – HOME Being married – HOME Caregiver’s preferences - HOME Macrosocial factors Historical trends - HOME Place of death Model of variations in place of death: Gomes B & Higginson I, 2006

Secondary data sources: Demography Demography Age structure ONS – Ageing in the UK Ethnicity ONS – Ethnic population Trends in living alone ONS – General Lifestyle Survey Dementia projections Mental health observatory – dementia tool Life expectancy ONS – life expectancy at birth and 65

Secondary data sources: Service infrastructure Service infrastructure Hospice Help the Hospices - databaseNCPC - care workforce survey Hospital DoH - palliative care bedsDOH - consultant by specialityNCPC - workforce survey Nursing and care homes CQC- number of nursing homesDoH - residential beds managed by NHS NHS Information Centre – number of social service staff in residential homes CQC - cost of residential nursing Primary care QOF - palliative care register and multidisciplinary case reviews Community services BBC - LA social care spendDep CLG - rehabilitation older peopleCQC - number of care agencies

Secondary data sources: Illness/disease progression Illness /disease progression What do people die from/with ONS – annual mortality extracts Treatment pathway HES – Inpatient, outpatient and emergency admissions Emergency admissions HES Sudden deaths Her Majesty’s Coroner's Department for Constitutional Affairs

Using secondary data sources: Profiles of case studies

Place of death, Source: South West Public Health Observatory from Office for National Statistics

Main cause of death, Source: South West Public Health Observatory from Office for National Statistics

Percentage dying at home by cause of death, Source: South West Public Health Observatory from Office for National Statistics

Case studies: Demographic data 18 CambridgeHull The percentage of population over 60 who live in households that are income deprived 13.7%30.7% The percentage of people in the area who are income deprived 9%24.6% The percentage of households living alone 49.92%48.5% The percentage of married households 30.9%34.6% The percentage of households providing unpaid care 8.2%9.5%

Case studies: Social care data 19 CambridgeHull N124 People with a long term condition supported to be independent and in control of their condition 79%72% Older people helped to live at home per 1,000 population aged 65 or over Older people aged 65 or over admitted on a permanent basis in the year to residential or nursing care N130 Social care clients receiving Self directed Support per 100, N 135 Carers receiving needs assessment or review and a specific carer’s service, or advice and information 16.3%32.3% Home care agencies (including nursing) 27: 1,75817: 7,253 Nursing homes 10: 1,75842: 7,253 Residential homes 80: 1,758102: 7,253

Case studies: Hospital and hospice provision 20 CambridgeHull Number of geriatric bed: persons aged 75 years and over 105: 7,253175: 17,581 Hospice beds in hospital Unclear Yes Hospice beds off hospital site 1220 Breathlessness services Yes Community hospice teams Yes

Conclusion The EOLC compendium is a unique resource. There are still many gaps in information. We can now start to further develop our understanding of EOLC by introducing new secondary sources. Possible next steps: – Develop a suite of indicators – Develop dashboard summaries for each LA –Develop a toolkit to enable LAs and PCTs to better use available data for their needs assessment