The Minimum Data Set (MDS) for Specialist Palliative Care Services is 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 is now coordinated by NCPC’s Information Analyst. The questions included in the MDS have been revised recently so that it remains as relevant and useful as possible. Collection of the revised MDS data began in 2008/09.

Services covered include:

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

Information collected includes:

• 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 is also published

How the MDS is used

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

• Informing 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 

Help us produce the MDS

The quality of the MDS relies heavily on the data we receive from services and we are grateful for their help. Participating services receive an individual report, benchmarking their unit against both local and similarly sized national services. Services have used these reports to compare themselves to local provision and drive up their own standards of care.

The 2009/10 report has been published and can be downloaded for free in the library! We are now collecting for the 2010/11 MDS, with the new forms available to download here.

Contact the team with any questions you have about the MDS

Getting copies

Our subscribers receive a free hardcopy of the MDS national report when it is published each year and can download electronic copies from the library. Archived copies of previous years’ reports are also available to subscribers.

Anonymised data is available upon request for research purposes.