Historical Hospice Records and Palliative Medicine Pioneers
Dive into the available historical records of hospice archives, personal papers of palliative care pioneers, and the challenges facing palliative care records. Discover the potential for further research in the history of palliative care through archival collections and other materials like patient records and narratives.
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Presentation Transcript
What types of historical records are available? 1
Hospice records There are 12 hospice archive collections listed on National Archive Discovery service (2 within London) Paul Lydon s 1998 records survey listed 69 hospices and hospice organisations in the United Kingdom with archival collections. Of those listed, 7 were held in archive depositories which were not listed on Discovery (including St Christopher's Hospice archives). The remaining 62 collections appear to have remained on site Other records may have been deposited in the name of the charities or individuals who created them or may have not been listed on national archive databases 2
Pioneers of palliative medicine and the hospice movement Personal papers of founders or researchers, notably Dame Cicely Saunders The Hospice History project run by the University of Sheffield, 1995-1999, recorded over 200 interviews Many of the first, second and third generations of palliative care workers are unrecorded, except through some oral history interviews 3
Questions What further research can be done on the history of palliative care? Can palliative care archival collections facilitate this? What other material is available? E.g. patient records, narratives and stories 4
Challenges facing palliative care records 5
Hospices Independent/NHS/national organization [e.g. Marie Curie] Organisational change (management change, staff turnover) Buildings not designed to hold archival stores (temperate/humidity control, secure store) Resources available (staff, funding, preservation material, training) 6
Archives Awareness of collections Collections policy: e.g. Local authorities, NHS records, Public records, Wellcome Trust Sensitivity of the records: all patient files may contain personal data on living people and therefore would be subject to Data Protection Act. The papers would also have to be screened for sensitivity especially for some medical conditions and potentially distressing information to living relatives 7
Find out what records are available Raise awareness with all interested stakeholders Archives can potentially offer a place of deposit, scoping and cataloguing funding, guidance on information management, digital records, preservation and training 9
Charity Archives in 21stcentury Recommendations 1) In light of the need demonstrated in this report a respected and established umbrella organisation should undertake further work on the state of charity archives in the UK. 2) All charities should look to pool resources and work collaboratively with each other and other institutions and agencies 10
Charity Archives in 21stcentury 3) Umbrella organisations and statutory bodies need to actively engage charities in recognising the value of records and archives in governance 4) Funding bodies should positively discriminate to enable charities to apply for and be successful in gaining grant funding 11
Useful links Charity Archives in 21stcentury by Michael McMurray (Royal Voluntary Service, 2014) National Archives Discovery electronic catalogue Case Stories website including digital archive on stories of transnational dying A Catalogue of Records Retained by Hospices and Related Organisations in the UK and the Republic of Ireland by Paul Lydon (Sheffield, 1998) 12
