South West Public Health Observatory South West Regional Public Health Group How will the new National End of Life Intelligence Network support commissioning and performance management Dr Julia Verne

South West Public Health Observatory South West Regional Public Health Group 7.29 End of life Intelligence Network (PHOs, charities, researchers, key users) Raising profile Better understanding Better commissioning Research Improved measurement monitoring

South West Public Health Observatory South West Regional Public Health Group Research Too slow and too expensive. Not useful (statistics, epidemiology, others) Social attitudes to death, dying and bereavement Environments of care Demographics of dying – especially non-cancer Attitudes to end- of-life issues amongst health and social care professionals Economics of end-of-life care Care in last days of life Spiritual care Effectiveness of models of bereavement care Support for carers Understanding current care provision Education & training Changing cultures in health & social care Communication about end-of-life issues Prognostication. Advance care planning

South West Public Health Observatory South West Regional Public Health Group Summary Needs assessment Projections Inequalities

South West Public Health Observatory South West Regional Public Health Group These statistics are people

South West Public Health Observatory South West Regional Public Health Group A good death The NHS End of Life Care strategy (DH, 2007) defines a good death as: –Being treated as an individual, with dignity and respect –Being without pain and other symptoms –Being in familiar surroundings –Being in the company of close family and/or friends

South West Public Health Observatory South West Regional Public Health Group Targets from the Next Stage Review e.g. SW Reduce deaths in acute hospitals by 10% per year (from 2007/08 baseline) for each of the next three years Reduce unplanned admissions to hospital from nursing homes in the last 12 months of life by 10% per annum (from the 2007/08 baseline) for each of the next three years. Ensure that patients can access the “basic building blocks of care” as described in the South West End of Life Pathway group report 24 hours a day, seven days a week.

South West Public Health Observatory South West Regional Public Health Group Numbers, people, conditions, place of death and inequalities

South West Public Health Observatory South West Regional Public Health Group Somerset

South West Public Health Observatory South West Regional Public Health Group A growing population Source :Office of National Statistics

South West Public Health Observatory South West Regional Public Health Group An ageing population England : The proportion of the total population aged 65 and over Source :Office of National Statistics

South West Public Health Observatory South West Regional Public Health Group An ageing population People age 85 and over, Size of population compared to 2006 Source :Office of National Statistics

South West Public Health Observatory South West Regional Public Health Group Actual and projected deaths England and Wales Source : Gomes and Higginson; Where people die (1974–2030): past trends, future projections and implications for care., Palliative Medicine 2008; 22: 33–41

South West Public Health Observatory South West Regional Public Health Group Age at Death M:F inequalities Source :Office of National Statistics Mortality data DH1

South West Public Health Observatory South West Regional Public Health Group Cause of death 2007 Source :Office of National Statistics Mortality data DH1

South West Public Health Observatory South West Regional Public Health Group Possible future mortality in the South West

South West Public Health Observatory South West Regional Public Health Group Vital Signs Home deaths (?+ Nursing and Residential)

South West Public Health Observatory South West Regional Public Health Group Distribution of place of death, by gender and age Source :Office of National Statistics, deaths in England 2007

South West Public Health Observatory South West Regional Public Health Group Place of death by place- All causes

South West Public Health Observatory South West Regional Public Health Group Place of death by place- Circulatory Disease

South West Public Health Observatory South West Regional Public Health Group Place of death by place- Neoplasms

South West Public Health Observatory South West Regional Public Health Group Deaths in the South West, Hampshire and IOW

South West Public Health Observatory South West Regional Public Health Group Length of final admission to hospital, by primary diagnosis (selected diagnoses) Source: HES, NHS Information Centre

South West Public Health Observatory South West Regional Public Health Group Month in which final admission took place, by primary diagnosis Source: HES, NHS Information Centre

South West Public Health Observatory South West Regional Public Health Group Patterns of Hospital Care at the end of life among people who will die from or with cancer

South West Public Health Observatory South West Regional Public Health Group Place of Death

South West Public Health Observatory South West Regional Public Health Group Episodes spent in hospital during last five years of life

South West Public Health Observatory South West Regional Public Health Group Time spent in hospital – bed-days Cancer siteDays Bladder32.6 Breast22.9 Colorectal26.2 Lung22.5 Prostate27.3 Cancer siteMonths Bladder7 Breast8 Colorectal9 Lung4 Prostate7 Average bed-days in last 6 months Half the total bed-days

South West Public Health Observatory South West Regional Public Health Group Following emergency admission

South West Public Health Observatory South West Regional Public Health Group Treatment

South West Public Health Observatory South West Regional Public Health Group Treatment

South West Public Health Observatory South West Regional Public Health Group Treatment

South West Public Health Observatory South West Regional Public Health Group Treatment

South West Public Health Observatory South West Regional Public Health Group Deaths and neuro-degenerative diseases, England 2002 to 2008.

South West Public Health Observatory South West Regional Public Health Group Table 1: mentions of neuro-degenerative diseases on death certificates, England 2002 to Source: Office of National Statistics, annual mortality extracts /8 Parkinson ‘s disease6,7466,7707,0427,6837,060 Motor Neuron Disease1,5591,6421,7791,8061,697 Multiple Sclerosis1,3611,2891,4091,5281,397 Huntington’s disease Multiple System Atrophy Progressive Supranuclear Palsy

South West Public Health Observatory South West Regional Public Health Group Table 3: the % of deaths which mention a neuro-degenerative disease and record it as the underlying cause, England 2002 to Source: Office of National Statistics, annual mortality extracts. % Parkinson’s disease56 Motor Neuron Disease88 Multiple Sclerosis64 Huntington’s disease79 Multiple System Atrophy81 Progressive Supranuclear Palsy80

South West Public Health Observatory South West Regional Public Health Group Chart 1: age/sex distribution of people who died with a mention of Parkinson’s disease on the death certificate, England 2002 to Source: Office of National Statistics, annual mortality extracts.

South West Public Health Observatory South West Regional Public Health Group Chart 3: age/sex distribution of people who died with a mention of Multiple Sclerosis on the death certificate, England 2002 to Source: Office of National Statistics, annual mortality extracts.

South West Public Health Observatory South West Regional Public Health Group Chart 4: age/sex distribution of people who died with a mention of Huntington’s disease on the death certificate, England 2002 to Source: Office of National Statistics, annual mortality extracts.

South West Public Health Observatory South West Regional Public Health Group Chart 2: age/sex distribution of people who died with a mention of Motor Neuron disease on the death certificate, England 2002 to Source: Office of National Statistics, annual mortality extracts.

South West Public Health Observatory South West Regional Public Health Group Socio-economic Inequalities

South West Public Health Observatory South West Regional Public Health Group Number of deaths, by social deprivation and age Source :Office of National Statistics, deaths in England 2007

South West Public Health Observatory South West Regional Public Health Group Distribution of place of death, by social deprivation Source :Office of National Statistics, deaths in England 2007

South West Public Health Observatory South West Regional Public Health Group Distribution of place of death, by social deprivation Source :Office of National Statistics, deaths in England 2007 Trend with increasing deprivation:

South West Public Health Observatory South West Regional Public Health Group ONS HES NCPC Compendium Hospice Information Service Uptake of tools GSF, PPC, LCP Innovat ive practic e QOF, EOL register s Surveys of public attitudes Complai nts Marie Curie nursing uptake by PCTs Local Authorities* NCIN* Police* Funeral Directo rs* National audits Social care* Nursing & Care homes Coroner s, Ministry of Justice Funding Prisons* Ambulan ce Trusts* A&E*