Improving every patient’s journey by sharing data to coordinate end of life care

Categories: Care.

We are passionate about providing the best possible end of life care. Compassion, empathy and making sure that every patient is respected as an individual and has their wishes maintained are our key principles and at the heart of everything we do.

For patients, their end of life care doesn’t sit with us alone. A range of local healthcare professionals play their part – all of us keen to deliver the best care, but often without the key patient information we need.

Of course, this is not just a problem for us but a national issue. Recommendations from the National End of Life Care Programme, the Department of Health’s End of Life Strategy and NICE quality standards all endorse an integrated end of life care record.

The national Electronic Palliative Care Co-ordination Systems (EPaCCS) was designed to focus on the recording and sharing of people’s care preferences and key details about their end of life care.

EPaCCS pilot in Cheshire

East Cheshire Hospice was chosen by the Cheshire End of Life Partnership as an early adopter to pilot EPaCCS with plans for full roll-out across the rest of Cheshire.

Firstly, in order to share information with other local providers, we needed access to the secure N3 connection – the NHS’ secure network that connects thousands of different NHS organisations.

We then established information sharing agreements with all of the partners within the pilot group –including the amount and detail of the information needed – to ensure all consent procedures were in place.

We also introduced a new clinical system, EMIS Web, in the hospice which enabled data sharing with other organisations. Being able to transfer data to and from other clinical systems across the health economy was crucial to our success.

As a generic electronic patient record, EMIS Web provides an excellent tool for storing and sharing the medical history about every patient. But we have also tailored this system to the meet our needs as a hospice.

For example, we have designed and created a range of templates and protocols to make sure we can record, share and use the specific information we need to provide the very best end of life care.

We now have a consistent and timely mechanism for recording and sharing all vital patient information – from referral details, to adding patients to the end of life care register, to personalised care plans and patient wishes.

We can ensure that all care plan documents are added and that specific elements of care plans are evaluated from pain and depression, to mobility and nutrition.

Achievements so far

We have now reached the final phases of the early adopter project and have already seen some fantastic results.

Access by clinicians to consistent, real-time information 24/7 has resulted in improved communication, handover between services and reliability of referrals.

Patients’ end of life care prognosis is shared with all relevant healthcare professionals, meaning that there has been a reduction in the number of times a patient has had to have a ‘difficult conversation’ with a clinician.

End of life care preferences are available and easily accessed by all clinicians – including in emergency situations – and adhered to. This has led to an increase in the number of patients who die where they would wish to, and a reduction in the number of unnecessary ambulance journeys and hospital admissions.

We are also identifying and supporting more carers and have seen a general reduction in complaints and increased satisfaction levels among patients, families and carers.

The system has also led to improved data collection and organisational reporting.

We are very proud of our achievements so far and would love to help and learn from others.

A number of hospices from across the country have already come to see us to find out more about what we’re doing and we have created a Hospice EMIS User Group to continue to share best practice.

As the evidence shows, we can make sure that patients at the end of their life receive the best and most coordinated care, possible – and we want to help others do the same.

You can contact Emma by email at

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