Electronic Palliative Care Coordination System
The Electronic Palliative Care Coordination System (EPaCCS) has been used to coordinate end of life care within and between health and social care providers since it was introduced in Nottingham City in September 2014. The system enables the recording and sharing of information about people’s end of life care preferences which leads to better informed practitioners and efficiency savings in time spent creating duplicate records whilst negating the need for patients having to repeat previous conversations. Flow of information with EPaCCS is shown in Figure 5.
Figure 5: Flow of information with EPaCCS (as at April 2015)
Evidence suggests the use of EPaCCS increases the proportion of people dying in their preferred place of death, reduces hospital deaths and increases deaths in the home and in hospices (Public Health England, 2013). In the first year of activity, 779 Nottingham City patients were registered in EPaCCS which increased by 27% (989 patients) in the second year (October 2014 – September 2015 and October 2015 – September 2016 respectively), indicating a substantial increase in utilisation of the system.
Approximately 75% of patients registered on EPaCCS had a do not attempt cardiopulmonary resuscitation status (DNACPR). Local intelligence suggests that an improved rate of DNACPR is representative of improved communication between the practitioner and patient about the potentially traumatic and invasive procedure. The preferred place of death for patients registered to EPaCCS in the last year is shown in Table 2, for 47% of patient registrations the preferred place of death was home.
Table 2: Preferred place of death of Nottingham City patients registered in EPaCCS, October 2015-September 2016
In December 2016 there were 845 active patients of Nottingham City recorded in EPaCCS which represents 30% of the expected number of annual deaths. Of the 845 active patients, 51% had a cancer diagnosis, 76% had a long term condition diagnosis and 28% had both a cancer and long term condition diagnosis. 74% of deaths took place in the usual place of residence or the patients’ preferred place of death.
Current provision and outcomes
It is estimated that approximately 1,000 patients are supported by one or more formal end of life service per year. Over a 12 month timeframe, 1,010 patients accessed the community and coordination service, 110 patients accessed the Primary Integrated Care Service and 369 patients accessed Macmillan. Many of the patients who accessed the community and coordination service also accessed the Primary Integrated Care Service or Macmillan.
Where outcome data was available, outcomes for patients registered on EPaCCS and/ or supported by the Primary Integrated Care Service (PICS) or Community and Coordination Service (EoL CCS) are significantly improved compared to outcomes for the City overall, as shown in Figure 6.
Figure 6: Outcome comparison
Community and Coordination Service
The Community and Coordination Service is commissioned for adult Nottingham City GP practice patients and their family and carers. The service is available for people deemed to be in the last twelve months of life and for any diagnosis. The service consists of the following elements:
Coordination service: a single point of access for referrals from practitioners for end of life care;
Response service: nursing support for patients and their families and carers twenty-four hours a day and seven days a week;
Planned palliative care: twenty-four hours a day seven days a week nursing and social support for patients and their families and carers including hospice at home and day therapy services;
Palliative care beds: for residential respite care; and
Pre and post death bereavement services.
Best practice education and training, specialist clinical advice and support, coordination of planned care and management of the EPaCCS system is provided in neighbourhood teams.
Key aims of the community and coordination service are to embed person-centred coordinated care and to reduce avoidable hospital admissions and deaths which evidence has shown are often less favourable for patients and their families and carers.
CityCare and Nottinghamshire Hospice collaborate to support patients by sharing information and aid transition between providers. EPaCCS enables practitioners to access the patients’ care preferences in real-time.
A palliative rehabilitation service including dietetics, occupational therapists and physiotherapists was integrated with the community end of life care offer in December 2016. This represents an opportunity to further develop the whole system approach to end of life care.
Other palliative care services dedicated to specific diagnoses including respiratory disease, heart failure, liver disease and cancer are also commissioned in Nottingham City and delivered by the Primary Integrated Care Service and Macmillan.
Improvements in the sharing of information and administration and the associated efficiency savings have led to an opportunity to increase and extend the remit of the integrated community offer. Where efficiencies can be found these will be converted to a clinical resource to improve quality and extend the reach of end of life care services.
In Nottingham City there are approximately 1,500 GP registered citizens in non-specialist care homes for older people. There are approximately 80 care homes, 54 of which are for older citizens. Given that 17% of deaths in Nottingham City took place in care homes in 2015, this segment represents a considerable proportion of citizens in need of end of life care and support. A separate chapter regarding care homes residents in Nottingham City is available at Nottingham Insight
Medicines management and community pharmacists
Nottingham City Care Partnership (Wilson, 2014) reported that up to 90% of all identified palliative care occurs within the patient’s home environment and the majority of patients and their family and carers prefer a home death. Due to common difficulties in swallowing medication it is often the case that symptom control medication must be administered through subcutaneous injection. It is therefore recommended that GPs prescribe medication in advance of deterioration.
The condition of those reaching the end of life can change rapidly, thereby requiring an urgent response. The End of Life Care Strategy (Department of Health, 2008) found that one of the major challenges in relation to the delivery of high quality end of life care in the community includes difficulty in accessing palliative care medication outside routine working hours.
Palliative care medication is available from a network of community pharmacies in Nottingham City as a means of improving access to medication. This requires the pharmacy to maintain the required stock of palliative care medication in line with the agreed list. Where requested, the pharmacist will provide advice to the health care professional regarding the prescribing or dosage of palliative care medications that should be administered to a patient. The pharmacist will also provide information and advice relating to the use of palliative care medication to patients and carers. There are currently twelve community pharmacies in Nottingham City providing this service.
Guidance for healthcare professionals to aid prescribing for symptom control and anticipatory prescribing in the last days of life is available from: http://www.nottsapc.nhs.uk/media/1079/end-of-life-prescribing-guidance.pdf
Nottingham University Hospitals NHS Trust
Clinicians must give consideration to end of life at discharge from hospital and, in collaboration with families and carers, share information appropriately with primary care and other care providers. Advance care planning should be documented in discharge information.
Hayward House is a specialist palliative care unit located within the City Hospital grounds. The unit provides holistic palliative care to patients and their relatives/carers. Patients are cared for by a specialist medical team including a pain management specialist. Complementary therapies and counselling are provided as well as activities including arts and crafts and access to pets.
Nottingham University Hospitals NHS Trust provides practical and emotional support to patients and their families and carers or staff through a number of services:
Nottingham Emergency Medical Services
Nottingham Emergency Medical Services (NEMS) provides a GP ‘out of hours’ service for patients in cases where care cannot safely wait until GP practices are open. The sharing of care preferences and advance care planning through EPaCCS enables the service to tailor care provision. Information is updated every 24 hours.
End of life care for children and young people
The Nottingham City Integrated Community Children and Young People’s Healthcare Programme supports young people, their parents and carers with life limiting and life threatening conditions and illness. This includes those who would benefit from palliative and end of life care. The Programme’s scope consists of community and acute paediatric nursing services as well as therapy services. (Nottingham City Clinical Commissioning Group, 2015).
East Midlands Ambulance Service
As with NEMS and other services, access to patients’ advance care planning is available to East Midlands Ambulance Service (EMAS) through EPaCCS. However, due to the limitation in the number of characters available for providing information on patient call outs, only the resuscitation status is currently included. There are plans for the clinical assessment team desk to have access to a read-only version of EPaCCS in the future.
When an individual has less than six months to live they may apply for Attendance Allowance or Personal Independence Payment through a fast track application available via www.direct.gov.uk
Support for Carers
Carers may require enhanced support at end of life and a number of options are in place to meet this requirement including Hospice at Home, day and residential care in a hospice, hospital or care home setting. A statutory Carer’s Assessment should also be completed by a social worker.
Other national and local support for patients and families and carers is available from the following organisations.
The Royal College of Psychiatrists provides a comprehensive list
of national organisations offering support and advice to people who have been bereaved.