Sampling

We aimed to capture national and local expertise in EoL and/or EoL medicines access, including policy, service delivery, research, education and PPI perspectives. We also aimed to include representation from a range of service delivery constituents (e.g. specialist, generalist, primary, community and acute care), as well as the different HCP groups engaged in supporting access.

Potential participants for the workshop were identified through purposive and snowball sampling, including using the study teams’ and SSC members’ networks. All members of the SSC were invited to attend the workshop. Invitations were sent to 42 individuals, representing 40 organisations, including NHS England, NHS Wales, Macmillan Cancer Support (London, UK), Marie Curie (London, UK), Association for Prescribers, Hospice UK, Royal College of Nursing (London, UK), Royal College of General Practitioners (London, UK), the Association of Palliative Medicine (Fareham, UK), the Association of Supportive and Palliative Care Pharmacy, eight hospices, six higher education institutions (HEIs), four hospital trusts, two NHS community trusts, two community pharmacies, five general practices and CCGs, and three PPI representatives.

Data collection

It was originally planned that the workshop would be run as a face-to-face event, with a plenary opening speaker and an external chairperson. Although 38 participants had confirmed attendance at this event, which was scheduled for March 2020, this was required to be postponed because of the COVID-19 pandemic. The workshop was, therefore, first rescheduled to another face-to-face event in September 2020. However, the continued enforcement of COVID-19 pandemic restrictions meant that the workshop needed to be converted to an online event.

Participants who had previously confirmed attendance for the March event were invited to the September online workshop. A summary of the study and the findings were prepared as a PowerPoint^® (Microsoft Corporation, Redmond, WA, USA) slide set. The workshop was held using Microsoft Teams (Microsoft Corporation, Redmond, WA, USA) and was audio- and video-recorded, with a transcript made of the audio-recording and participants’ ‘chat’ comments to aid analysis of key discussion points.

Patient and public involvement experiences

In their roles as previous carers for a family member at EoL, PPI presenters highlighted the following.

The benefits of timely access to appropriate medicines included effective symptom control, enabling home care as opposed to admissions to hospital and/or hospice.

Barriers encountered included accessibility of prescriptions being ‘process-heavy’ [e.g. getting prescriptions, liaising with the pharmacy and obtaining the medicines (both collection and delivery) was all very time-consuming], information provision was mixed [e.g. service providers sometimes assuming that some things do not need to be said (such as if the syringe driver bleeps, do not panic), especially when carers are not listening because they are anxious and tired] and acting as a co-ordinator was time-consuming and difficult because EoL care of a family member is difficult.

Facilitators of medicines access included good information provision; availability and accessibility of information OOH; a MDT approach and MDT communication; accessibility of prescriptions through online repeat prescription request systems and EPS; HCPs understanding the unique circumstances of the patient and family and knowing the patient and family cannot be overestimated; and a pharmacist being accessible on the telephone, including OOH, and being able to give support for the logistics of ordering and responsibility for delivery of medicines to the home, as well as for advice, expectations, reassurance (i.e. that what is happening is normal) and finding the right HCP who fits for the situation.

General practice model

Key findings that formed the focus of discussion were as follows:

• It is sometimes difficult to access GPs/general practices and the GP workforce numbers are declining.
• The need for CPs to be able to recognise palliative care scripts to prioritise and ensure their speedy delivery to patients. Participants endorsed our finding that palliative care scripts were not always recognisable by pharmacists who do not have access to patient records. It was suggested that ways of identifying these scripts are needed. A participant was able to give a local example in Scotland of GP records being shared with pharmacies, and the initiative of patient-held e-records was also suggested. During the COVID-19 pandemic, pharmacists have been given enhanced access to the SCR, which has been reported as helpful.
• A need for HCPs to be aware of the services that other HCPs in the MDT offer. Participants recognised our finding that there is a lack of awareness on the part of HCPs of other HCPs’ EoL services. In respect of GP–pharmacy communication, participants considered that co-location of the pharmacy with the general practice greatly aided communication.
• The value of a specialist link or facilitator pharmacist to educate HCPs across a range of care settings and attend general practice-based MDT palliative care meetings was raised.
• It was suggested that the commissioning of new HCP services should include a dissemination plan to inform all HCP groups, as well as patients and carers.
• Participants considered that both integrated care pathways and Primary Care Networks (PCNs) could help to improve interprofessional communication. For example, PCN pharmacists have an obligation to communicate with GPs and their teams as part of quality assurance. The COVID-19 pandemic led to good practice in this area, with, for example, daily interprofessional calls helping to create greater awareness of each other’s’ services. The use of remote online communication, such as through Zoom (Zoom Video Communications, San Jose, CA, USA) or Teams, used during the pandemic had also made interprofessional communication easier. This should be continued and could also be used for interprofessional teaching and education purposes.

Clinical nurse specialist prescribing model

Key findings that formed the focus of discussion were as follows:

• Participants recognised the study findings on the need to upskill more of the CNS workforce to be prescribers, where there was local need, and community CNSs finding it difficult to access prescribing training courses (because of competition for places with other specialties and being a non-NHS provider).
• The time costs of CNS prescribers resorting to handwritten scripts and not being able to use EPS, as well as the necessity of, and the significant challenges of not being able to, access shared electronic records, with IT systems not being joined up across the hospice (i.e. NHS interface).
• COVID-19 had increased general practice-based nurse prescribers’, as well as GPs’, use of EPS. Now that the EPS includes CDs, it was recognised as working well from general practices, although it was noted that other community settings had much less EPS access.
• Skilling up the CP workforce to be prescribers was a strategic plan nationally.
• CNSs prescribing in the home might need support and communication systems with the GP/a medic to share prescribing responsibility.
• Hospice-based CNSs may not be expected to take on responsibility for repeat prescribing, but may do for new and acute symptoms.
• In the light of local needs and the different contexts and settings in which EoL HCPs prescribe medicines, participants suggested the idea of right person and right place for prescribing rather than a one size fits all approach.

Community pharmacy model

Key findings that formed the focus of discussion were as follows:

• A need for more commissioned service pharmacies keeping a stock of EoL medicines, using a small national formulary across all pharmacies. This would promote consistency and fairness of access to core medicines, keep accessibility local to patients and services would capitalise on existing local relationships between patients and pharmacists. Area- or PCN-specific medicines could then also be added as a second level.
• A universal, local scheme could help to increase awareness of other HCPs of the service.
• It was noted that during the COVID-19 pandemic extra pharmacies had been commissioned (i.e. added to existing service provision) to keep stocks of EoL medicines.
• Adding information to the SCR and pharmacists’ access was seen as a helpful solution.

Telephone support line model

Key findings that formed the focus of discussion were as follows:

• The importance of remote telephone support was endorsed.
• The work of co-ordination in accessing medicines was seen as necessary, to some degree, for individualised care and because EoL care is not simple. The issues raised with regard to this was who does this, how and the cost. It was also noted that carers’ costs are not built in.
• A national standard mini-formulary of the most commonly used EoL medicines, would get over the work of telephoning around numerous pharmacies to source medicines. There would then be an onus on pharmacies to manage stocks so that they have always got those medicines in (and it was thought such an initiative should smooth things out significantly).
• Participants noted that there is always the issue of out-of-stock medicines. Therefore, its important to use the PCN and practice pharmacies within PCNs to communicate up-to-date information (i.e. if something on the core list is out of stock, then GPs and nurses need to know).
• Any consideration of the costs of the service need be balanced against less use of other services as a consequence of having the TSL in place.
• From a PPI point of view, it was raised that carers and patients may be more inclined to use a service that they perceive as cheaper (e.g. if a service is sited in a community pharmacy and not a general practice).