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Our experience using the electronic care register

The problem

I am a Macmillan GP in Richmond, and I’m now also working as end of life care and cancer commissioning Lead in Richmond. I was also appointed the RCGP Clinical Lead for EOLC Coordinate My Care last year.

The Department of Health’s 2008 national End of Life Care Strategy highlighted that surveys consistently show that the majority of us wish to die at home (71%) or in another community setting (ONS National Survey of Bereaved People, 2012). Despite significant investment following the strategy, over half (51%) of all deaths still take place in hospital.

Most patients who die will have had two or three unplanned admissions in the last year of life. Current costs per admission for end of life care patients are around £2,800 - £3,400. Avoiding one admission for 10% of those who die would save £120m on tariff per year, which is equivalent to 80 hospital wards.¹

Many of the measures outlined in the strategy focused on improved communication – both between health professionals and patients nearing the end of life and between the various professionals and agencies across sectors involved in providing care.

The strategy recommended the development of registers to improve the identification of patients in the last year of life. These registers can improve communication, advance care planning and the coordination of care.  With appropriate consent and governance, they can provide access to up-to-date information for all health care providers who have a legitimate relationship with a patient, across a range of settings, 24/7.

Richmond’s end of life care strategy emphasised the need to build care around the needs and choices of patients locally. The electronic palliative care coordination system (EPaCCS) gave us the opportunity to not only record patient’s important medical conditions and preferences around end of life care but also to coordinate these to key healthcare professionals involved in their care.

Getting started

EPaCCS allows recording of information including the patient’s diagnosis, current and anticipated problems, advance care plan, resuscitation status and patient wishes for their care. Development of an agreed data set is an important starting point.

How we did it

Coordinate My Care EPACCS was developed in partnership with three local pilots in Richmond – two of the pilots were also part of a national pilot programmethe results of which are in the Ipsos MORI evaluation. CMC is linked with NHS 111 and aims to be implemented across London.

Typically, each practice nominates at least one GP or nurse to enter and update the register. Users are issued with a username and password after being trained in its use. Practice team meetings can act as a prompt to highlight patients identified in practice for inclusion onto the register. GP practices are asked to designate a named practice lead for the EPaCCS including a deputy to cover annual leave or sick leave.  Each entry is tracked in order to provide a data trail around who has entered a patient into the scheme and who has been involved in a patient’s care, which improves patient safety and clinician accountability.

The record was initially developed and trialled on an Adastra system which subsequently changed via an IT tender process, to the current version on System C. During implementation, training was delivered to help improve confidence, knowledge and skills of healthcare professionals in Richmond who were undertaking more end of life care conversations with patients.

During the first 12 months of CMC, 52% of patients on the ECaCCS were recorded as having a non-cancer diagnosis, 15% had dementia and 42% of patients were not known to specialist palliative care.

One example of getting a patient’s consent to join the EPaCCS could be Mrs Smith. She is diabetic, hypertensive and with end stage heart failure. She lives in a care home and her performance status has reduced following her second hospital admission this year.

Her GP recognises that she is likely to be in the last year of life. After a practice multi-disciplinary meeting, the community matron who also knows Mrs Smith agrees offers to visit and look to consent Mrs Smith to allow key information around her medical conditions and care preferences to be documented on the EPaCCS.

It is important to involve family and carers with these discussions where possible. The visit provides an opportunity in her journey of care, to build on and record end of life care discussions as part of her advance care plan. This is recorded in the primary care records and contemporaneously shared with key health care professionals involved in her care including the London Ambulance Service.

Early in its work, the South West London Palliative Care Network had identified the importance of creating a standard data set having seen the issues caused across London due to the use of different palliative care forms in each trust.

This process has now been made easier with the Information Standards Board for Health and Social Care’s approval of an information standard for end of life care (ISB 1580).² The standard requires all contracts for new EPaCCS signed since March to specify compliance with the standard IT systems for existing EPaCCS are required to comply by December 2013.

The standard, published in March 2012, is accompanied by implementation guidance and separate guidance on recordkeeping. An information standard describes a way of managing information to improve data quality and allows consistent recording of data. The new standard and guidance were developed by the Department of Health and the National End of Life Care Programme.

Lessons learned

During the pilot phase, how patients are consented on to the record was an issue of particular concern to GPs. For CMC, it was decided that patients should be offered the decision to ‘opt-in’ to being added to the register and consented on to the record. This consent is obtained by the individual’s GP or named key worker responsible for the patient’s coordination of care, at a face-to-face meeting or consultation. If the patient lacks capacity to opt in, recording relevant information in the patient’s ‘best interest’ may be appropriate. Wherever possible this decision is discussed with the relatives, carer or next of kin.

Improving health and social care integration, highlights the need to consider reflecting access to both health and social care in localities. In addition, there is a recognised requirement for systems to ‘talk with’ primary care records in order to minimise the need for dual entries.

These discussions should occur at an appropriate time on a patient’s journey and it is noteworthy that a small proportion of patients never want to have discussions around preferred priorities of care and their wishes should also be respected. Due to the sensitive nature of end of life care discussions with patients, it is important to include family and carers where possible.

This raised issues around the challenges clinicians can face when starting conversations about end of life care. Surveys have shown that health professionals can feel uncomfortable in such situations and that professional development support has been shown to be helpful.³

The free online learning resource ‘End of Life Care for All’ has a large number of sessions on communications.4

Although many clinicians may feel confident consenting and having end of life care discussions, it will be important to offer support and training for these kinds of consultations. This training will be around advance care planning and communications – but it needs which exist regardless of the arrival of EPaCCS.

In Richmond, we developed an interactive multi-professional workshop for imporving communication skills, which resulted in a significant improvement reported in participants’ confidence, attitudes, knowledge and performance on how to have effective difficult conversations with patients and carers in the last years of life.


Some 83% ofpatients entered on CMC were initiated in the community, showing a high level of GP commitment to improving end of life care.5

For patients on our scheme 70% of deaths took place outside hospital. That compares with a national average of 49%. Where individuals had their preferred place of death recorded, in 73% of cases the patient died where they wanted to.  

Of all deaths when preferred place of death was recorded, 73% of patients died where they wanted to.

In the 2009 National Snapshot, around only 27% of end of life care patients, were recorded on a practice register and only 46% of these were recorded as having had their details sent from the GP practice to inform the relevant out-of-hours service.6

In 2012, an audit of faxed handover forms sent to the London Ambulance Service revealed that only 72.7% had sent the form with the patient’s consent. Nevertheless the forms were sent. In the scheme having the patient’s consent is mandatory and without it patient details cannot be shared. A full 100% of patient records on this scheme are shared with the out-of-hours and London ambulance services.

GPs, community nursing teams, specialist palliative care and acute teams are able to edit the register. Currently, out-of-hours and the London ambulance services have viewing rights only.

In Richmond, of 337 patients in the last year of life who registered on CMC over the course of the pilot year (November 2010 - 2011), there were 125 emergency admissions between them. Local analysis estimates that Richmond patients have on average two emergency admissions in the last year of life.  

Assuming patients on CMC are in their last year of life, we could expect 354 emergency admissions, and predict that the EPaCCS will facilitate a reduction in admissions by 229.  Assuming that the pilot saves 229 admissions it will provide a cost saving of around £687,000.7

The future

The EPaCCS mid2012 survey report notes that EPaCCS projects are well underway across the country, with 14 sites reporting that they have implemented systems, and a further 10 partially implemented. This covers much wider than solitary PCT geographical areas; London and the South West are also some way down the track to rolling out EPaCCS. By contrast the 2010-11 Locality register pilot sites report, which featured eight pilot sites. 

Adastra is reported as the system most in use, with 10 of the 14 sites who have implemented using the system. Partial implementations use a mixture of Adastra, SystmOne, SCR and other systems. Those who are planning to deploy EPaCCS are looking at the use of the Summary Care Record more than Adastra and SystmOne, perhaps reflecting the more widespread implementation of the record across England.

EPaCCS represents a culture shift, which will require support and training in order to deliver improved quality of end of life care and empower patient choice. The information standard developed provides us with guidance to help achieve this in the UK.

In London, as CMC is rolled out across London, it provides a working example of how EPaCCS can be used to capture fundamental information along the patient’s journey. By sharing this information across health and social care, better coordination and communication seem to produce better quality, more efficient, more personalised and cost-effective care.

Dr Millington-Sanders is a Macmillan GP in Richmond. She is also EOLC and Cancer Commissioning Lead in Richmond and the RCGP Clinical Lead for EOLC Coordinate My Care.


1 DH QIPP team. Features in the Gold Standard Framework report 2011.

2 ISB 1580 End of Life Care Co-ordination: Core Content. 2011.

3 National End of Life Care Programme. Talking about end of life care: right conversations, right people, right time. 2011.

4 E-LfH. End of Life Care for All. 2011.

5 NHS Richmond. CMC Audit, August 2010-March 2012.

6 Omega. End of Life Care in Primary Care National Snapshot. 2009.

7 Admissions data provided by NHS Richmond’s QIPP projections, 2012.


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