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Pain relief in terminal care in the community | Signal

Reference number
1140 D
Issue date27 November 2009

This Signal relates to problems with 24-hour access to pain relief for terminally ill patients in the community, including issues with anticipatory drugs and staff being unfamiliar with syringe drivers.


Recent policy and practice has placed great emphasis on the need to provide good quality end of life care.


This includes planning and support for terminally ill patients at home, with adequate pain relief and symptom control. Recognised good practice for  patients who are terminally ill is to have ‘anticipatory’ medication, equipment and prescriptions in place, without needing to prescribe an extra dose once the patient experiences more pain.


However, in practice this may be difficult to set up in advance. For example, when the patient is taking increasing doses of sustained release opioids (such as MST ) orally, the exact prescription needed for a syringe driver and cannot be predicted in advance.


Prescriptions have to be made in writing as these are controlled drugs (with greater precautions in use since The Shipman Inquiry).


A typical incident reads:


“Patient discharged home for terminal care 21 December.  Family contact OOH [out-of-hours] service on 26 December as patient distressed and family couldn’t cope.  Condition – end stage of life – screaming in pain and agitated. Family distraught.  No district nurse input – no notes. No anticipatory medication. Had to get diamorphine via pharmacist and locate syringe driver.”


Following a trigger incident, the National Reporting and Learning Service (NRLS) identified 79 incidents where failure to give adequate pain relief caused substantive distress to terminally ill patients. Sixty of these incidents happened at home. It is recognised that there is also substantial under-reporting of incidents from the community overall.


Some reports related to anticipatory drugs not being prescribed or supplied. Other problems reported include staff not trained to use a syringe driver, and delayed responses from out-of-hours GP or community nursing services. While these are well known problems, local review may be needed. 


Organisations may want to refer to good practice examples to promote local improvements in ‘joining up’ out-of-hours services for palliative care patients. For instance, see the Marie Curie delivering choice programme for more information.



What local protocols have you got in place, including out-of-hours arrangements, to ensure access to pain relief?

Does this include:

  • assessment and prescribing by physicians out of hours
  • supply chain for provision of medication (including mapping community pharmacies and others in your area)
  • coordination between community/district nursing, Macmillan nursing and others?


If you have had any local investigations or new policies that you would like to share, please send to rrr@npsa.nhs.uk


Relevant to: community nursing, general practice, medication






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