Minimum Data Set

The Minimum Data Set (MDS) for Specialist Palliative Care Services was collected by NCPC on a yearly basis, with the aim of providing an accurate picture of hospice and specialist palliative care service activity. It is the only annual data collection to cover patient activity in specialist services in the voluntary sector and the NHS in England, Wales and Northern Ireland. 

The MDS was developed in 1995 by NCPC in association with the Hospice Information Service at St. Christopher’s Hospice, and was coordinated by NCPC’s Information Analyst.

Collection of the revised MDS data began in 2008/09 and ended in 2017.

Services covered included:

  • Inpatients
  • Day Care
  • Community Care (including Home Care and Hospice at Home)
  • Hospital Support
  • Bereavement Support
  • Outpatients

Information collected included:

  • Numbers of people using the services
  • Mean length of stay / care.
  • Demographic information: sex, age and ethnicity
  • An extensive breakdown of diagnosis, for each service setting, particularly in the case of conditions other than cancer 
  • Contacts between staff and patients / carers

Reporting:

  • Individual reports to each service responding to the data collection, comparing its data with national and SHA data.
  • A national report was also published

How the MDS is used

The MDS has been made use of in the following ways:

  • PiechartInforming the National Audit Office (NAO) report on End of Life Care
  • Informing commissioners about population-based needs assessment for their area and in developing end of life care strategies for their areas
  • Enabling benchmarking of services
  • Developing costing methodology for Health Resource Groups
  • Trend analysis, for example in relation to access to specialist palliative care by age and by people with non-malignant conditions
  • Individual services can use reports for internal audit as well as to inform negotiations with commissioners
  • To inform the work of NCPC’s policy groups which in turn have informed national strategies and policy development 

Contact the team with any questions you have about the MDS

Getting copies

MDS Report CoverThe most recent reports are available at this link. Previous years can be found in the bar on the right of this page. 

Data may be made available upon request for research purposes. If you are requesting data from a particular service you will need permission from them before we can release their data.