Carers and Pharmacists (CAP): Experience and understanding of legal and ethical frameworks

Principal investigator:  Felicity Smith, University College London

Aims and Methods 

Our aim was to improve understanding of current and potential roles of pharmacy services in supporting carers of older people. Stage 1 was a review and analysis of legal and ethical documents relevant to pharmacists when supporting carers of older people in the use of their medicines. Stage 2 was a qualitative study with 18 family carers, and 12 pharmacists and other health/social care professionals, in which data were collected in face-to-face, 1:1 interviews to obtain carers’ understanding and experience of the role of pharmacy in assisting them in medication-related activities; and the perspectives of pharmacists and health/social care professionals on interpretation of legal and ethical frameworks relevant to supporting carers who assist older people with medicinesFindings were combined to suggest ways how carers and pharmacists may have a clearer understanding of what information and support can be provided and to inform policy and guidelines on the role of pharmacists in supporting carers, including identifying gaps in both.  

Key Findings : 

Community pharmacists need guidance on how to support carers as they may see the carer but not the patientwork in isolationdo not have access to healthcare systemsand employ locum staff and assistants who may interact with carers. Carers may use several pharmacies and patients may have multiple carersThe spectrum of care provided can be very wide. People who help others with medicines do not always see themselves as carers and pharmacists do not always know who helps patients with medicines. Identification protocols for carers were not in place in pharmacies nor did pharmacies have a systematic method of recording carer statusMore guidance exists for GP surgeries.  Policy guidance is vague and does not address the range of ethical issues that supporting carers can present to pharmacistsor how to involve carers when there might be conflicting responsibilities to patient and carerThe interview data showed that consent was not being obtained routinely from patients to share information with carers in community practice.  Policy guidance does not cover how pharmacists should obtain or record consent. Most pharmacists said they were ‘vaguely familiar’ with the Guidance, and reported no recent training. Patient confidentiality and capacity were not well understood.  There was a general lack of awareness by patients and carers of the role of pharmacy services.   

Recommendations : 

A definition of carer is required that works for pharmacy services, so a starting point might be to identify “a person who assists someone else with their medicines in any way” Further research could be undertaken to assess the application of this definition for pharmacy services and carers.

pharmacy agreed method of identifying carers is required and one method might be to formulate triage questions.  Further research would test this triage question. Pharmacies could collaborate with GP practices, where systems and approaches to identify carers are also being developed. This could be at CCG level.

Raising awareness of how pharmacies could help those who help others with medicines could be aided by increasing self-identification using local and national campaignsvoluntary organisationslibraries, local council websites and social media. Pharmacists could be more proactive in offering support to people who help with medicines. 

Further research is needed to develop feasible methods and a suitable tool for pharmacists to obtain consent to share information when the patient is not present.

Community and hospital pharmacy system suppliers could add a field for recording carer status (to include a carer with medicines responsibility) and this could also be recorded on e-discharge and paper discharge forms along with consent information. This information needs to be shared with healthcare professionals in primary and secondary care. Further research could consider how this information can be included in the Summary Care Record (with all healthcare professionals able to both read and write to it). 

Supporting pharmacy teams to develop their role Pharmacists would benefit from guidance as part of the code of ethics as to how they can support people who help others with medicines. This could be developed with the RPS and GPhCBespoke training programmes for pharmacists could be developed using existing programmes where possible. Subjects could include consent, confidentiality, information sharing and capacity.  Training could be online, face to face or run as a CPPE workshop, in the form of case studies or scenario-based. Peer mentoring  groups could be developed.

This project ran from June 2014 to August 2015. The executive summary is available here and the final report is available here.