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End of life care register

The Department of Health’s end of life care strategy recommends that commissioners develop a locality-wide end of life care register to store information on all patients approaching the end of life, regardless of diagnosis or care setting. Successful roll out of the summary care record (SCR) would facilitate improvement in end of life care over time. In order to speed up progress in this area, an end of life care register would be implemented in advance of the SCR roll out.

The Department of Health provided £50,000 funding to eight sites across England – two in London – to pilot a register in their area. Given the benefits of developing a single solution for London, the two pilots joined together and other PCT areas aligned their end of life care register plans to this.

Formal working arrangements between all official and unofficial pilots in London have taken place since the pilots began and have been coordinated through the Coordinate My Care pan-London working party and includes the following pilot members:

• Sutton and Merton (official national pilot)
• Camden and Islington (official national pilot)
• Richmond and Twickenham (unofficial pilot)
• Lambeth, Southwark and Lewisham (GSTT Modernisation Initiative unofficial pilot)
• Inner north west London: Hammersmith and Fulham, Kensington and Chelsea and Westminster (SPA/111 early adopter)
• London Ambulance Service

In February 2011, NHS London’s Strategy and Innovation Professional Leadership Group (S&I PLG) approved the proposal to align the development of end of life care registers with the NHS London programme to improve urgent and unscheduled care through the single point of access (SPA) and ‘111’ three digit number programme.

This programme is in the initial phase of recruiting SPA developments across London as early adopter sites to embed NHS Pathways as their telephone clinical assessment system, supported by a directory of services (DoS). The DoS will cover urgent and specialist palliative care services where these are commissioned. Embedding and utilising end of life care registers into NHS Pathways will be one of the pre-requisite entry criteria for London SPA early adopters. This will enable early adopter SPAs areas to identify patients on end of life care registers requesting urgent care services from the SPA so that the most appropriate palliative care response is offered.

In April 2011, it was agreed that a single, coordinated training programme for a common pan-London end of life care register be cascaded across London and funded through the multi-professional education and training (MPET) budget. For the first six months, the training will be delivered by the Coordinate My Care group, hosted by the Royal Marsden NHS Foundation Trust. It will support clinical governance through common practice, common process and consistent recording of information, ensuring quality of care through a pan-London understanding of information held on the register. The Coordinate My Care group will provide regular updates through London’s NHS Delivery Group.