P104
THE ADVANCED RENAL CARE (ARC) PROJECT – INTEGRATION OF A RENAL CAUSE FOR
CONCERN REGISTER WITH NATIONWIDE GP BASED LOCALITY REGISTERS
Shepherd, K1, Vinen, K2, Bristowe, K1, Baynes, D2, Matthews, B3, O’Donoghue, D3, Murtagh, F1
1
King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and
Rehabilitation, London, 2King’s College NHS Foundation Trust, Department of Renal Medicine, London,
3
NHS Kidney Care
BACKGROUND:
The ‘End of Life Care Strategy’ (DH 2008) and the ‘End of Life Care in Advanced Kidney Disease: a Framework
for Implementation’ (2009) identified the need to improve co-ordination of care, recognising that people at the
end of life frequently receive care from a wide variety of teams and organisations. The development of Locality
Registers (now known as EPaCCS) is recommended as a key mechanism for enabling improved co-ordination by
the Department of Health. NHS Kidney Care funded a 6 month extension of the Advanced Renal Care (ARC)
project, to test use of the EPaCCS for kidney patients.
OBJECTIVES:
To pilot integration of renal cause for concern register with the GP based electronic End of Life Care Register
(eEOLCR).
SETTING AND PARTICIPANTS:
Renal patients in hospital/community setting eligible for the cause for concern register. These were then included
on EPaCCS in liaison with the primary care team.
METHODS:
Patients who were already on the local renal cause for concern register were considered for entry onto the
eEOLCR if it was agreed at the MDT meeting that they were deteriorating.
RESULTS:
Over a three month period, 14 patients (of how many on the CFCR) were entered onto the eEOLCR. The mean
age was 78 (range 58-87), 50% were White British, Irish or White Other and 50% were from an African,
Caribbean or Mixed White and Black Caribbean background. The Register holds information on patients’
DNACPR status and preferred place of care (PPC). Of the records reviewed, 40% had a DNACPR status on the
Register and 40% had a recorded PPC, however 50% had neither of these pieces of information recorded. Only
three patients in our pilot sample died, so it is too early to assess the effect of the eEOLCR (if any) on the
achievement of patients’ preferred place of care.60% of register entries were added by Specialist Palliative Care
teams, 30% by the patients’ GP and 10% by community nursing. The patient records were viewed 34 times. 62%
of these views were by community nurses, 36% by palliative care teams and 3% by GPs. Patient records were
updated on 10 occasions, 50% were made by GPs, 40% by Specialist Palliative Care and 10% by community
nursing. Mean duration on the register was 160 days (range 9-382 days). There appears to be a positive
correlation between the length of time a patient spends on the register and the number of views and updates
however the sample size is too low to state this with any certainty.
CONCLUSIONS:
A generic EPaCCS system can be used successfully for patients with End Stage Renal Disease. It is valuable to
primary care, specialist palliative care and renal teams and could improve communication, integrated working and
care delivery.