Patient and carer access to medicines at end of life: the ActMed mixed-methods study

General practitioners

All GPs (n = 31) practising in the three case study practices were invited to take part in an interview.

Community pharmacists

The lead pharmacists in six community pharmacies (identified via NHS Choices website54 as the nearest pharmacy to each of the general practices’ dual sites) were approached.

Community palliative care clinical nurse specialists

Team leads for each of the geographical areas covering the general practices were asked to attend a focus group, alongside one other nurse specialist from each team.

Community nurses

The head of nursing invited CNs from the community trust’s teams that covered the general practices to participate.

Activities undertaken to access medicines

The activities that patients and carers undertook to access medicines, in their experience, frequently felt like work. These activities included getting prescriptions (both new and repeat), liaising with community pharmacies or practice dispensaries for medicines to be dispensed and then obtaining medicines via collection or arranging home delivery.

Patients accessed new prescriptions via their GP (requiring telephone consultations and/or practice/home visits), but often recommendations for new prescriptions came from other HCPs, such as palliative or secondary care specialists (e.g. hospital-based oncologists). When other HCPs advised new prescriptions, patients were reliant on these HCPs contacting the GP on their behalf, for example via hospital outpatient appointments letters, which meant a delay in the medicines being prescribed by the GP, or via a palliative care specialist nurse telephoning and e-mailing the GP with recommendations.

When medicines were achieving good symptom management, GPs often placed medicines onto repeat prescriptions for patients. To obtain these, patients and their carers utilised three different systems:

1. telephoning their community pharmacy (which acted on the patient’s behalf to request the repeat prescription from the general practice)

2. completing the back of their dispensed prescription slip (and dropping this into their general practice or practice dispensary)

3. utilising online repeat prescription request systems.

Patients and their families usually had to wait 2 working days following placing the repeat prescription request to obtain the medicines from their selected pharmacy, but others had to allow 7 days (and they this considered as unnecessarily lengthy). For some patients and their families, these varied systems to obtain repeat prescriptions were confusing:

My husband was getting very confused and I was getting confused. Every time we went down [to the general practice] you saw someone different who told you, you had to do something different. They were saying about doing it online and then they were saying ‘oh just drop it in the surgery’. ‘Oh, get it from the pharmacy’ . . .

P2003, practice 2, interview 1

Patients and their families communicated with their community pharmacy, general practice dispensary and, in some cases, hospital pharmacy (where patients were receiving palliative chemotherapy regimens). Community pharmacies often contacted the patient or their family once medicines were available for collection (via e-mail, text or telephone call), but, equally, some patients and families telephoned the pharmacies to check that medicines had been dispensed before making the journey to collect them. Most patients were reliant on family members to collect medicines from pharmacies on their behalf, and when this was not possible they arranged for home deliveries to be made. Patients and families selected pharmacies based on what was most convenient for them (usually the one closest to their general practice site).

The experiences of patients and their families were also framed by how they accessed medical devices (including wound dressings and catheter supplies), enteral feeds and home oxygen cylinders via other supply systems (see Appendix 7).

Who do they work with?

Patients and carers discussed working with different HCPs (e.g. their GP, palliative care CNSs, CNs and CPs), non-HCP staff at their general practice (e.g. receptionist/administrative staff) and family/friends to gain access to medicines.

After GPs, patients were most likely to refer to their palliative care CNS, if they had one (note that three patients did not). Contact with CNSs varied from once per week (either via telephone or a home visit) to occasional contact (or reliance on patient/carer-initiated contact when issues arose).

When contact was regular, CNSs were particularly valued by patients or carers for their specialist knowledge regarding palliative care medicines (as well as their ability to consult with a palliative medicine consultant). For more complex medicines-related or symptom management issues, carers would contact the nurse specialist rather than the GP. Patients appreciated that CNSs were easier to access than the GP and that they would do ‘the ringing round’ on behalf of the patient (i.e. contacting the consultant for complex advice and contacting the GP to advise medicine changes). When the nurse specialist advised medicine changes, the common experience was:

She informs the GP and we then pick the medication up that she’s suggested . . .

C2002, practice 2, interview 1

Community pharmacists were also mentioned often. Patients and carers valued feeling that their community pharmacy staff knew them:

I like them, and I go in there and say hello and they know what I need.

P2005, practice 2, interview 1

Such relationships were sometimes facilitated by the patient and their family having used the pharmacy for years:

I’ve known them all down there for years because we’ve lived here 34 years. So, whoever goes and gets my prescription they always say give her our love or they ask how I’m doing.

P2002, practice 2, interview 2

Community nurses were referred to occasionally, and this was usually in relation to the supply and potential administration of anticipatory medicines (i.e. just-in-case boxes delivered into the home).

Reception/administrative staff within general practices were also referred to. For example, one patient reported that the practice receptionist was the key source of information regarding how to access repeat prescriptions and had set up the ‘patient access’ to enable him to use the online repeat prescription request system.

Family members were key in patients’ ability to collect medicines. However, they played other roles, such as:

• communicating with the general practice/GP to gain consultations and, therefore, prescriptions for medicines

• taking the patient to all health-care appointments (both general practice and secondary care)

• stock managing medicines (to work out what was required)

• re-ordering repeat prescriptions

• liaising with community pharmacies (and, on occasions, hospital pharmacies), as well as practice dispensaries.

Only one patient in the sample (at the time of data collection) was not reliant on his family to help with his access to medicines. Most patients highlighted how lucky they were to have family available to help.

Information provision

Information regarding medicines themselves, and how best to take them, came from the GP as prescriber, but also secondary care specialists and palliative care CNSs when they had recommended medicines to be prescribed by the GP. Palliative care CNSs were influential regarding patients’ understanding of medicines.

In relation to how to access medicines, patients and carers spoke of a lack of information provision. When a new prescription might be required, it was often difficult for patients and carers to decide which route to take, for example should they contact the GP or the specialist nurse. Patients and their families were left floundering over who to contact. As one carer simply said:

. . . it would just be useful if the GP said this is how you do it, if you want this, just do this.

C2001, practice 1, interview 3

For another carer, this was expressed as:

. . . nothing has really been clearly explained.

P2003, practice 2, interview 1

How best to access repeat prescriptions had often been worked out by patients and carers via trial and error or previous experiences (such as caring for others in the past). All patients and carers recognised that they should re-order medicines approximately 1 week in advance.

Patients and carers all referred to a desire to receive tailored face-to-face information regarding not only the medicines themselves but also how to access them.

Learning to navigate systems

Only two patients and one carer spoke of feeling confident using the various systems needed to access medicines. Despite a lack of expressed confidence in this, patients and carers referred to things that they had learnt themselves and to consequent behaviour changes, for example leaving as much time as possible when putting in a repeat prescription request ‘. . . not doing it the day before . . . trying to leave a lot of time’ (C2001, practice 2, interview 1) and telephoning the pharmacy to check that medicines were ready to be collected to prevent an unnecessary trip or having to wait in the pharmacy for the items to be dispensed. Patients and carers learnt about their community pharmacy operations, such as when in the day their pharmacy received deliveries (e.g. 11.00 and 15.00) and, therefore, when to contact the pharmacy regarding a prescription in case an order with a wholesaler needed to be placed. Patients and carers also learnt to use a system that worked for them to stock manage/keep track of their medicines and recognise when they were running low. Last, patients and carers learnt to check medicines dispensed for errors prior to leaving the pharmacy so that the items could be returned to stock if they already had enough of the medicine or if the medicine was not the correct dose or form (to prevent medicines wastage):

. . . What I know now which I didn’t know at the beginning is that once you walk out the pharmacy with it they can’t do anything with it so . . . we always check it before we leave . . .

P1002, practice 1, interview 1

Issues encountered

Patients and carers encountered an array of negative issues when accessing medicines, described below in order of frequency of occurrence.

Facilitators of medicines access

Activities to aid access to medicines

Activities to aid access to medicines included:

• CNSs and CNs advising the general practice prescriber of new medicines required or dose changes to existing medicines prescribing

• CPs, and other HCPs (CNSs and CNs), checking whether medicines were in stock or could be ordered

• community pharmacies helping to arrange home deliveries for patients who are housebound with no family to help with collection.

For both CNs and CNSs, much activity appeared to revolve around going ‘through the GP’ to ask the GP to prescribe the required medicine(s) and then following up with the GP to see if this had been actioned and if the medicine had been obtained by the patient. The work involved in this process (i.e. chasing to ensure that breaks in the medicines access process did not occur and that access was timely) was onerous:

We have to request it [prescribing of medicines] from the GP and that then is a process . . . If it’s an urgent medication . . . we would e-mail with a phone call to follow it up, so that it’s marked as urgent and then we spend a lot of time potentially chasing that to make sure that it’s been sorted out. Sent to the pharmacy and then delivered . . .

CN001–004

General practitioners undertaking prescribing (often following recommendations from other HCPs) expressed this as ensuring that ‘people have got access to the right medication for what they need now’ (GP301, practice 3).

Who do they work with? The family of the patient was frequently referred to by HCPs because of the ‘onus’ often placed on them to ‘go and collect’ medicines (CN001–004). This was reinforced by GPs, for example ‘a lot of the time it’s usually the relatives that will be involved in terms of collecting medication’ (GP202, practice 2), and CPs often referred to seeing carers and not the patients themselves. There was a perception among the CNs that because ‘engaging the families’ at EoL ‘is very difficult’ as ‘they [the family] feel very useless’ (CN001–004) families valued being given this task to ‘feel they’re really doing something’ (CN010–015). The reliance that HCPs placed on family members was summarised as follows:

Often you are dependent on the carer for the patient, a relative, picking up prescriptions and sorting things out . . . You are to some extent dependent on the carers to pick up issues, the wrong medicines, the wrong doses, have they been given enough for the weekend . . . Those sorts of things which if they’re not there you’d have to do yourself as a GP . . .

GP201, practice 2

General practitioners spoke of liaising with PCPs [who would review patients in the last year of life, ‘but not specifically palliative medication’ (GP101, practice 1)], CNs (e.g. in relation to setting up syringe drivers), local CPs (e.g. checking that specific medicines were in stock, checking doses and asking them to set up dosette boxes) and CNSs. CNs referred to working with GPs, CPs and CNSs (seeking to do joint visits when appropriate). CPs mainly referred to working with GPs. Palliative care CNSs referred to all other HCPs, as well as general practice reception staff (especially prescription clerks).

Issues of workload and under-resourcing of services (particularly among the community palliative care service) were discussed as precluding relationships, with staff turnover cited as an issue in relation to community nursing teams. Nevertheless, amid these service pressures, there were examples of effective HCP working relationships:

. . . I’ve got a very close working relationship with our palliative care CNS . . . she knows my mobile number, I know hers and we’ll text each other even if either of us is not working if it’s required about a patient . . .

GP101, practice 1

Information provision

All HCPs referred to providing information on medicines to patients/carers and some, particularly CPs and CNSs, reported providing information on how best to access them. The mainstay of information about medicines appeared to come from GPs as prescribers or from HCPs advising that specific medicines be started (or doses altered). GPs stated that they provided information such as the ‘pros and cons of each individual medicine, the potential side effects, the way that they’re titrated’ (GP101, practice 1):

. . . As a general rule when we prescribe we tell them this is what you do, this is what you take . . . if it’s a p.r.n. [as required] medication we have to give them specific instructions like how much to take and how often to take [it] and then if you are taking this much you may need to give us a call back in which case we may need to titrate up your background analgesia for example . . .

GP202, practice 2

In contrast, CNSs referred to the need to supplement information provided by the GP:

. . . Sometimes you find say the GP’s been out and prescribed . . . a new medication . . . you’ll go there [home visit] and they’ll [patient] say ‘oh, the GP prescribed this but, I didn’t really know what to do with it’ or ‘I was scared to take it because it’s morphine’ . . . and then you kind of explain . . . ‘you can take— take this much’ and, you know ‘this is when you take it’ . . . That happens quite often . . .

CNS001–007

Community pharmacists in the sample also referred to providing ‘extra additional information’ (CP001) about how to use medicines (i.e. when to take them, discussing concerns, what to expect, what to do when encountering side effects). They often found that family members were ‘quite well informed when they come in, they just want the reassurance that they’ve been given the right information’ (CP002). In contrast, CNs appeared to provide less-detailed information about medicines, for example in the words of one CN ‘we just say “this drug is for this, will alleviate this” but it’s not really much more than that’ (CN005–009).

Information regarding how best to access medicines fell to CNSs and CPs. The CNSs encountered the following scenario:

. . . What I’ve found with my patients, they don’t really know how to get their repeat supply . . .

CNS001–007

As a result, CNSs and CPs found that they needed to talk patients through the processes of how to get their medicines. CPs provided information on re-ordering medicines sufficiently in advance:

. . . we just say order 1 week before they run out or a few days, don’t allow for the medication to run out and then ring.

CP001

In contrast to patient and other HCP data, GPs believed that ‘most patients’ were ‘aware of’ the ‘mechanism for ordering’ medicines (GP101, practice 1).

Issues encountered

Facilitators of medicines access

Health-care professionals highlighted facilitators, both actual (i.e. already occurring in practice) and potential service-related improvements.

Patients and carers

Patients were required to be registered on a CNS caseload. Hospice research nurses searched CNS caseloads for eligible individuals and carried out repeated searches for new listings on a monthly basis.

Health-care professionals

Activities undertaken to access medicines

Accounts of the ease of the journey, from prescription through to receipt, varied within and between participants, and more difficult experiences were often due to reduced support (i.e. gaps in CNS service between staff changes) and the patient having a keen intention to manage this themselves. However, most patients/carers reported mainly positive experiences and were able to describe how CNS input simplified the prescription process for the patient/carer:

Yesterday I had a conversation with nurse [CNS] around at the hospice in relation to some medicines and she did it by way of e-mail to the practice and the practice then e-mailed me or text me to say that it had been done and it will be ready for collection this afternoon . . .

Dyad CNS08, interview 1

Some patients/carers described processes that required increased patient/carer input, such as calculating how frequently to re-order medication, setting reminders to re-order, keeping abreast of changes, prescription ordering methods and re-arranging collection and/or delivery times.

Information provision

Patients reported that their CNSs provided sufficient information about their medicines regardless of who had prescribed it, including how and when to take it and what it was for. Patients said that they could ask their nurse for information about medicines at any time. CNSs anticipated problems with patients’ interpretation of medicines leaflets and so prepared the patient appropriately:

[CNS] said . . . when you read the leaflet don’t get a shock because it’s given for patients with schizophrenia . . . but in low doses it’s been found to be very beneficial in stopping you feeling sick.

Patient CNS04, interview 1

General practitioners and secondary care specialists were more likely to provide information for the medicines they initiated themselves or when asked to do so by the patients. CPs also provided medicines information when asked to do so by the patients. Accessing repeat prescriptions had often been worked out by patients and carers via previous experiences prior to their current diagnosis. CNS input had streamlined medicines experiences for patients who had persistently experienced issues, enabling speedier access. Patients valued being able to contact the CNS to prescribe medicines that were not ready when expected:

I wouldn’t say it’s been smooth . . . we’ve had a lot of times where nearly every time I went to the chemist it was like, oh guess what they haven’t got this I’ve got to go back . . . now we’re onto an equilibrium and it’s not too bad. Now we’ve got the CNS we can access it more quickly and more directly, so it has become better . . . We’ve had cases where we’ve done a repeat prescription and the stuff hasn’t come through and I’m thinking oramorph, something that you can’t really do without . . .

Dyad CNS10, interview 1

Learning to navigate systems

The CNS not only helped guide patients through systems, but also supported them in their self-management:

She’s very respectful so when she gives me the prescription and I say I’m going to deal with it she lets me deal with it. If I say I’m having trouble with something she’ll help me . . . she steps in when I need her to which is great . . .

Patient CNS02, interview 3

Patients and carers learned to prompt themselves to order medicines:

I’ve got reminders set up on my phone to do everything because otherwise I will just forget.

CNS02, interview 1

In addition, patients and carers learnt to leave enough time when putting in a repeat prescription request and would contact the pharmacy to check that the medicines were ready to be collected:

. . . you try and be organised so that you have got those 2 or 3 days but sometimes with controlled medicines they don’t like to give it you in advance.

Dyad CNS06, interview 1

Facilitators of medicines access

Issues encountered

Patients and carers encountered few negative issues. When these negative issues did exist, they related to initial, minor or infrequent problems that were often addressed by their CNS who also helped ensure that patients did not encounter subsequent issues.

Activities to aid access to medicines

Activities to aid access to medicines included:

• CNSs requesting that GPs prescribe new medicines or alter dosage of existing medicines

• GPs, palliative care doctors and CNSs prescribing

• CNSs and CNs helping to obtain medicines (i.e. liaising with pharmacy to check stock, handing paper prescriptions to pharmacy and, occasionally, collecting medicines on behalf of patients).

Clinical nurse specialists’ activities followed a process. First, CNSs were tasked with assessing patients’ symptoms, existing treatment plans and what they could cope with to make a treatment plan. Then, CNSs checked patients’ nominated pharmacy for stock, provided information to the patient, wrote a prescription or sent an electronic request (or, in some cases, an e-mail or telephone call) to the GP to prescribe. CNSs’ decision to prescribe new medicines depended on how quickly the prescription was needed. (If there was no stock, CNSs would re-write the treatment plan for an alternative medicine or contact other local pharmacies.) If the medicines were needed urgently and a family member or friend was available to collect from a pharmacy with stock, then CNSs prescribed on a separate script for each item (to broaden choice of pharmacy). If no family member was available and the patient was able wait for a delivery and the medicines were available at the nominated pharmacy, then it was quicker for a GP to prescribe via electronic transfer. CNSs who reported more difficulty in accessing GPs than others typically undertook more independent prescribing, particularly if based in urban locations with a wide choice of pharmacies to collect from. This CNS described how her assessment considered factors that would enable the swiftest access:

Depending (1) on who the GP was, (2) what day of the week it was we’d make a decision whether I would ring the GP and discuss it with them and ask them to prescribe or whether I chose to prescribe it myself. So often the decision to prescribe it myself is usually speed of access so for instance yesterday I went to see a lady . . . she’d been vomiting all night, she was distressed so it was easier for me to do the prescription . . . I rang the chemist and they had it in so Dad kindly went and got it so she got her symptom relief really quickly . . .

CNS HP18

Although CNSs typically transferred responsibility for repeat prescriptions to the GP, they wrote repeat prescriptions when they judged that access would be speedier for the patient (e.g. exacerbation of symptoms, impending weekend/bank holiday, stock unavailable at usual pharmacy). GPs were satisfied with the medicines recommendations made by CNSs and were happy to prescribe these. One GP acknowledged that GPs in the practice rarely saw EoL patients and that they would often contact the palliative care team or refer to Electronic Palliative Care Co-ordination Systems (EPaCCSs) to prescribe themselves.

Much CN activity included contacting GP services (particularly OOH) to request a patient visit or recommend that they prescribe the required medicines. The district nurses (DNs) stated that most nurses in their teams did not prescribe; however, one DN said she:

. . . re-prescribe[d] for GPs when they prescribe incorrectly, and I will source the medication for them as well. There’s not many non-medical prescribers in the community district nursing integrated teams as they are now . . .

DN HP16

Information provision

General practitioners provided information about initial prescriptions and endeavoured to tailor the information given to the specific patient and avoided overwhelming them. One GP stated that he provided:

As much or as little as they ask . . . some patients don’t want to know very much at all . . . others want to know exactly what we use, when we use it, in what dose, how do they know that they’ve got enough, when it can be repeated again . . .

GP CNS02

Clinical nurse specialists introduced new medicines by ‘always explaining what we were thinking of trying, why . . . what the side effects, what we’re hoping to aim for with that’ (CNS HP18).

Clinical nurse specialists checked patients’ understanding of medicines prescribed by other HCPs and modified information previously given:

I had a patient last week who had come home from hospital with some lorazepam that he was meant to put under his tongue but it’s not generally used in that way, it will say swallow, and that’s what it said on the information . . .

CNS HP08

Clinical nurse specialists explained the rationale for HCPs’ prescribing choices:

A lot of patients . . . won’t want to take things . . . often I find explaining the action of the drugs and how they are working . . . helps them understand a bit better as to why they are needing them . . .

CNS HP09

Health-care professionals provided basic information about who to access for their prescription {e.g. ‘it’s calling us, it’s calling OOH [GP], the district nurses’ (GP HP07)}, what to do if barriers to repeats are encountered [e.g. ‘when I do a prescription I say it should go onto your repeat and you need to contact the GP, if you are having problems with that ring me’ (CNS Group2)] and where to access the medicines. Some patients had their own nominated pharmacy, whereas others needed help to:

. . . access the pharmacy itself . . . not all pharmacies are offering free delivery to housebound patients so it’s sometimes trying to guide them around that as well . . .

CNS HP07

In addition, CNSs provided ‘a leaflet . . . about the fact that we’re non-medical prescribers and what that means’ (CNS HP18).

Facilitators of medicines access

There were several facilitators of access to medicines and potential service-related improvements identified.

Issues encountered

Clinical nurse specialists’ knowledge and experience of specialist palliative care, local health services and medicines armed them with resources to pre-empt problems with medicines access, resolving them, in many cases, before they arose. Therefore, few issues were encountered.

Community pharmacists providing commissioned services for palliative care

From 75 commissioned services schemes for palliative care across England, 37 CPs providing these services, who participated in the phase 2 survey, agreed to be contacted about phase 3 of the study. These CPs were initially approached, followed by 12 local CRNs that were active in community pharmacy research across England. Additional CPs providing this service interviewed for phase 4 (see Chapter 7), as well as research team contacts, were also approached.

Those interviewed were asked to provide details of their service commissioners and copies of service-related documents to inform commissioner sampling and documentary analysis.

Commissioners of community pharmacy-delivered services for palliative care

Commissioners were sampled via CP-provided information and publicly available data on CCG and NHS England websites. A mix of CCG and NHS England commissioners were sought.

Community-based health-care professionals in case sites

Nested sampling occurred, with community-based HCPs interviewed within the other case study sites asked for their views on these services.

Qualitative interviews and analysis

Interviews with CPs and commissioners were performed via telephone. Semistructured interview guides were developed using phase 1 literature, phase 2 data and initial scoping of publicly available service-related documents. Guides incorporated questions on costs and resources to support service delivery and the relative effectiveness of the service. Interview data were audio-recorded, fully transcribed and analysed using framework analysis51 (by NC and ZE) (see Appendix 17).

Service-related documents as data sources and documentary analysis

Commissioner and pharmacist interviewees were asked to provide copies of all documents specific to current service provision. These documents acted as data sources and underwent documentary analysis. 56 The focus was on financial incentives (or otherwise) for providing the service, community pharmacy service locations, the numbers in relation to local/regional population demographics and need, the range of medicines on the stocked list (including whether or not there was a focus on just-in-case/anticipatory medicines alone) and any extended opening hours.

In addition, all LPC websites (circa n = 70) were searched via URL: https://lpc-online.org.uk/ (accessed 1 December 2021). If documents were current, they were added to documents obtained from interviewees.

Description of services

Two of the 17 schemes were commissioned by NHS England regional teams and 15 were commissioned by CCGs. Two schemes were 24-hour (OOH) schemes to enable patients to access palliative care medicines when other pharmacies were closed (with a call-out mechanism). Fifteen schemes were more standard schemes that operated from several pharmacies in the area, requiring pharmacies to stock a specified list of palliative care medicines.

Service hours

Information on service hours was available for 12 of the 17 schemes, showing extended hours availability. Most schemes favoured 100-hour pharmacies or those with longer opening hours, including evenings and weekends. Two schemes were 24-hour (OOH) services and the remaining 10 schemes were extended-hour schemes, with opening times including 06.oo to 24.00 Monday to Friday, 06.30 to 22.30 on Saturday and 09.00 to 12.00 on Sunday.

Populations covered

Information about the number of pharmacies in the scheme was available for 12 of the 17 schemes. The number of pharmacies ranged from 1 to 57 per scheme (mean n = 15).

The population of patients per commissioned service pharmacy within each CCG or NHS England region was calculated utilising Office for National Statistics (2018) data. 58 Population per pharmacy ranged widely from 6740 to 612,764 (mean n = 133,454). Quality and Outcomes Framework (2019) data on the population of palliative care patients registered in each CCG indicated that the number or patients per pharmacy ranged from 21 to 2391 patients.

Independents versus multiples

Information on the use of multiple and independent pharmacies was available for 9 of the 17 schemes. All nine schemes used a mix of multiple and independent pharmacies, except one, which used only independents.

Medicines

Information on medicines was available for 13 of the 17 schemes. Several schemes had subschemes for different geographical areas, often using different medicines. Six schemes had a single medicines list and the largest scheme had eight lists within it.

There were 101 different medicines listed, including 17 different classes, with 593 medicines in total. The most common medicines listed were opioids (243/593, 41%). This included six different medicines (alfentanil, diamorphine, methadone, fentanyl, morphine and oxycodone) with between 1 and 11 forms and strengths (see Appendix 18, Table 24). Other common medicines were antisecretories, antiemetics, antipsychotics and diluents. Some schemes included medicines less commonly associated with palliative care, such as antidiarrhoeals, H₂ antagonists and diuretics.

Payment

Two schemes were for 24-hour (OOH) services, with one scheme paying a weekly retainer of £150 (or £250 if the week contained a bank holiday). Both schemes paid call-out fees (one £133 and the other £150). Annual payments for the more standard service ranged from £150 to £775, with one scheme seeming to indicate no payment made.

Eleven of the 12 standard schemes (where information was available) included reimbursement for expired stock. Some standard schemes paid set-up costs, ranging from £50 to £500, but some did not disclose costs paid. One scheme offered to pay for additional CD storage if necessary.

Not all schemes indicated how payments were to be claimed. Two schemes required the pharmacy to invoice the CCG. Three schemes required quarterly claims or payments for as little as £37.

Audit

Only 8 of the 17 schemes mentioned audits. Four schemes indicated an annual audit, two schemes indicated a monthly audit, one scheme indicated that audits would be ‘periodic’ and one scheme said that audits could happen.

Continuing professional development as a requirement

Information on CPD was available for 13 of the 17 schemes. Six schemes had no CPD requirements, three schemes required that ‘relevant CPD should be carried out’ and four schemes asked for the Centre for Postgraduate Pharmacy Education (CPPE) palliative care package to be completed. However, it is important to note that the CPPE package is no longer available and only a small number of resources are now available from that provider, despite the requirements still ostensibly being in place.

Sample

Twenty CPs were interviewed (by JL) (eight interviews via CRNs, seven interviews via phase 2, three interviews via research team contacts and two interviews via phase 4), 17 of whom were operating services commissioned by CCGs (n = 13 services). Three CPs’ services were commissioned by the same NHS England region. Interviewees were employees in independent pharmacies (n = 14), large multiples (n = 5) and small multiples (n = 1). The total number of prescriptions issued per month in interviewees’ pharmacies ranged from 2645 to 25,796, with a median of 9158. Commissioner participants (interviewed by JL and ZE) were commissioners or commissioning staff of three NHS England regions and four CCG-commissioned services.

Types of pharmacy and service

Community pharmacists worked in a range of pharmacy types typical of community pharmacy service provision in England, including small independents in populated or city areas, chains (large multiples), pharmacies in or next to general practices, village pharmacies and 100-hour pharmacies in towns or hospitals. The service was available continuously during the opening hours of the pharmacy in 16 instances, with the remaining four pharmacies providing a rota service for 1 week in every 6 months (including on-call OOH provision, facilitating 24-hour service).

History of service and changes over time

Services had typically been operating for at least 5 years, ranging from 18 months to > 10 years, and many CPs had inherited a service that was operating in the pharmacy before their employment there. Most CPs suggested little or no changes over time, apart from medicines being removed or, more often, added to the list. Points raised included services considered to have been scaled back, with a lesser fee (possibly for financial reasons) to a service that no longer offered call-outs or an OOH arrangement (assumed to be through lack of demand or new extended-hour pharmacies being available in the area).

Most schemes were historically run by primary care trusts; however, when NHS England was later established, many CCGs then adopted these services. Other services were commissioned by NHS England regions, but, in some parts of the country, there was a reluctance by CCGs to commission, as there was little or no funding attached. Many schemes had been inherited by commissioner interviewees and interviewees recognised that an equitable service was not on offer across the area:

There were some areas that did the service, some areas they have no service, and some areas that are partial service . . . some pharmacies were paid for the service, some did it on a goodwill basis. [We] decided to put one service in place for all . . . no variation . . .

Commissioner F, NHS England

Often, commissioners were not fully aware of the history of their scheme before they came into post; however, they kept the same service and payment arrangements in place going forwards, with changes only to individual service providers leaving or joining the service, and to medicines.

Process of commissioning

When contracts were renewed, usually only minor changes were made in terms of processes, formularies and requirements. Service specifications and related documents on LPC websites were not always up to date. When an area needed service provision or a pharmacy dropped out (often when contracts were due for renewal), commissioners could ask for expressions of interest via the LPC. One commissioner described receiving more than 100 expressions of interest for the service and then using selection criteria (i.e. geography and opening hours) to identify contractors. Some commissioners tried to identify geographical gaps and then targeted pharmacies that had long opening hours to fill them.

Some commissioners were sole lead for the service, whereas others were part of a team. There were lengthy conversations to get service details agreed (which were usually in place for several years), often with the LPC.

Funding the service

The norm reported by the CPs was £150–350 per annum, either paid quarterly, 6-monthly or, often, annually. All services were reimbursed for out-of-date medicines, but services rarely needed to claim for this as medicines were generally used before expiry. The general feeling expressed was that funding was not an important factor in running the service, as the aim of the service was to provide a good service for patients/relatives at a stressful time. However, one CP, with a dual role in a pharmacy and CCG, considered funding to be meagre. Some commissioners commented on difficulties funding the service:

. . . we’re funding this at current but there is no budget to fund this service . . .

Commissioner E

I suppose the other main challenge would be the funding, restricted funding, you’ve only got a finite pot really to work with . . .

Commissioner F

Medicines stocked

All CPs reported being required to stock an ‘extensive’ list of medicines, ranging from 11 to 15, with different strengths and quantities. A handful pharmacies, mainly the 100-hour pharmacies, were also asked to keep an additional list of some more specialist medicines. Pharmacy staff mentioned that the main differences from standard medicines stocked in their pharmacy related to quantity and strength, rather than type.

Stock lists varied. The NHS England commissioner of the largest scheme aimed to have one list; however, because of local specialist palliative care prescribing variations, they had eight lists operating within six CCGs. Lists reportedly required regular review because of changes in prescribing habits. One CCG used a core list for all community pharmacies to stock and an additional list for four geographically dispersed pharmacies.

In the main, medicines stock availability at the time of data collection was not perceived to be an issue, although it had been in the past for some of the CPs for some CDs. Supply problems were experienced by CPs for a couple of EoL medicines. Some CPs reported being able to source medicines through wholesalers directly or by contacting the head office of their pharmacy chain. Other ways in which the occasional inability to dispense medicines was overcome included contacting other pharmacies locally to see if any had it in stock and either ‘signposting’ the patient, relative or nurse to such pharmacies or requisitioning/’transferring’ CDs from another pharmacy. If these ways were not fruitful, CPs contacted prescribers to see if an alternative medicine could be prescribed. This was not an issue with pharmacies that were co-located with surgeries, hospitals or hospices, but it could cause delays if the prescription had been issued OOH and/or by a locum GP that was unknown to the pharmacy.

Extended opening hours

Thirteen of the community pharmacies routinely operated extended opening hours (outside standard weekday hours and Saturday mornings). No CPs had to change their opening hours as a result of participating in the scheme.

Network of pharmacies

Apart from two CPs, most were in and around a city or town with other participating pharmacies. Two exceptions were pharmacies in village settings with no other pharmacies nearby. The majority of CPs claimed to be familiar with which pharmacies were offering the service in their areas and communicated with others (e.g. to source medicines not in their stock).

Awareness-raising to health-care professionals and patients/carers

Most CPs considered that HCPs (usually nurses), patients and carers were aware that their pharmacy was one that offered a commissioned service. Typically, one CP suggested:

[HCPs are more aware now] as they’re given a list of the pharmacies in the area who can supply palliative care. What I do find, quite a lot of them will actually phone up first and just double-check with us if we either have items in stock or we are available to do it. I’m seeing a lot more of this now than I was a few years ago . . .

CP 13

Most CPs suggested that if the prescriber knew which pharmacies were on the list, then they could convey this to patients/carers. However, one CP had found that changes in staff (notably CNs) necessitated the development of a method to keep them up to date and used a laminated copy of pharmacies/opening hours (as an ‘aide memoire’) for nurses to carry in their cars.

No service was advertised directly to the public and commissioners felt that this was something that patients should be directed to by HCPs:

We just didn’t want patients turning up willy nilly, we wanted it to be a more targeted approach . . .

Commissioner E, NHS England

Commissioners were of the view that information from most services was disseminated to multiple HCPs:

. . . so that goes to all pharmacies, GPs, dentists, I presume optometrists, councils, community providers, hospices, on-call people . . . and then [we] ask people to disseminate accordingly . . .

Commissioner E, NHS England

One commissioner acknowledged that there could be more information-sharing about the service, and this was something they were addressing in their next iteration of the service:

We admit that there probably hasn’t been enough publicity and sharing of that information across not only the community pharmacy network and the LPC but also the professionals trying to access those services, and the public . . .

Commissioner C, CCG

Some commissioners communicated information, but this information could get lost or mislaid, especially with staff turnover. Communication between the commissioning team and the pharmacies was also important for timely awareness of changes to the formulary or shortages.

Promoting the service to HCPs may not have occurred because commissioners did not wish reliance on the service, but would rather see HCPs plan ahead:

. . . but we try not to promote it too much because if we promote it . . . we don’t want people to think this is a service that means you don’t have to think ahead . . .

Commissioner A, CCG

Commissioner engagement with the service

Engagement was dependent on the individual commissioners and pharmacists, but there were some examples of good practice where education events were held (at a hospice) and twice-yearly visits to pharmacies performed to promote engagement in the service, undertake stock checks/audits and/or communicate medicine shortages. This type of engagement was not demonstrated by the larger schemes and one commissioner had very little involvement or understanding of their service. Owing to larger services being commissioned by NHS England, other responsibilities and medicine shortages, there may increasingly have been less time for commissioners to engage with services. With larger services commissioned by NHS England, other responsibilities and medicine shortages, there may increasingly have been less time for commissioners to engage with services.

Audit requirements

Few CPs suggested that auditing was required of them. However, of those CPs who had experience of any form of auditing, two indicated that they had to submit a self-‘audit’ report quarterly to obtain payment through PharmOutcomes (Pinnacle Systems Management Ltd, Isle of Wight, UK) (i.e. the system used for claiming payment in some areas). This report included service usage and recording of expired medicines.

According to commissioners, a varied amount of auditing took place and they expressed a wish to do more. Barriers included restricted time of both commissioning teams and community pharmacies. Some commissioners conducted visits for audits and one LPC had requested that any audit should be carried out by the commissioners, as pharmacies were already overstretched. Audits included questions on stock, prescribing patterns and barriers, as well as some quality assurance issues, such as appropriate claims, out-of-stocks and opening hours. Requests to pharmacies for quarterly stocktakes were sometimes made and some commissioners requested evidence of completion of a CPPE module.

Three commissioners conducted no audits, relying on complaints to tell them whether or not the service was working:

. . . and we have to take it that if we don’t hear about the service, we’re assuming that it’s working . . .

Commissioner E, NHS England

Several commissioners looked at whether or not appropriate claims were being received as a form of audit. When an audit was carried out (in the minority of cases), it was reportedly used for refining services and ensuring that pharmacies were providing the service. Commissioners were keen to ensure value for money through processes such as stock rotation.

Scale of usage

The number of calls on the service varied widely, ranging from ‘hardly ever at all’ in pharmacies on the on-call rota, to three or four per month in standard-hour pharmacies, to four or five per week (including more at weekends) in 100-hour pharmacies in, or co-located, with hospitals.

Views on the impact of the service

All CPs considered that their service worked well in relation to aims and by comparison with access prior to being in a commissioned service. Reasons for this improvement included the following:

• The service works well at difficult times (e.g. when planning is insufficient or with unanticipated deterioration/worsening of symptom control).

• The service provided is much needed, especially in the last few hours of life. Extended hours means not having to wait for a pharmacist to get into the pharmacy or having to wait until the next day when the pharmacy is open.

• The service has improved on pre-commissioned services in which the range of medicines was not easily accessible to CPs and which necessitated people having to go into hospital/hospice.

• A visible, one-trip service for patients’ relatives is provided. It was claimed that relatives know where to go to get medicines dispensed via such services. As one CP said:

CP 5

In the past [prior to the service] I had a patient for which we didn’t have [the correct injection] and the relatives were so frustrated with us because we didn’t and they had to go to a different pharmacy . . . So, yes, I think having your daily local pharmacist helping you with this kind of service . . . it’s a great benefit for the whole community . . .

• The service is both an emergency service, preventing unnecessary hospice/hospital admission, and one to support ‘managed’ palliative care at home when patients had been prescribed anticipatory medicines.

• The location of the service (e.g. near or next door to a general practice) was of benefit, with patients/carers and HCPs knowing about the service.

For commissioners, the scheme and medicines included were a back-up or emergency response for when things could not be, or had not been, planned for. Most commissioners thought that the scheme helped access to medicines for patients at the EoL and all who answered the question (four/seven) ‘Is the service better at enabling patient/carer access to medicines’ thought that this was the case.

Resources required

Most CPs experienced no specialist training other than online CPD (which, for many, was completed quite a long time ago). An exception was one group of commissioned pharmacies with links to a hospice, and a further referred to the availability of ‘in-house training’ for new medicines and/or new members of staff.

Most pharmacies had enough space for stock. Commonly, part of a drawer or shelf was dedicated to the medicines that did not need to go into the CD cabinet.

Challenges to improving medicines access through commissioned service provision

Challenges were infrequently cited by the CPs and included fulfilling prescriptions when there was a medicines shortage, incomplete prescriptions necessitating the pharmacist to contact the prescriber and difficulty reading the prescription if written by hand (less common with electronic prescribing).

Many CPs considered the list to be too long, with medicines/doses that were not prescribed. This, in conjunction with medicines being dispensed but not necessarily used, led to a concern about the wastage of medicines.

In contrast, challenges were commonly stated by commissioners. The most frequently cited challenge was staff turnover and use of locums, leading to poor communication or knowledge about the service and lack of continuity:

One of our big issues is reminding the guys that actually they are in the service . . .

Commissioner A, CCG

Medicine shortages, including when items had been recently dispensed without time for re-stocking, were also challenging for commissioners, particularly for some CDs. Another challenge was the lack of patient, carer or HCP feedback, meaning that pharmacy staff were unaware of whether or not the service was adequate or useful.

Commissioners spent a range of their time managing this service, ranging from 2 hours per month to 7 hours per week. Remuneration and budget concerns were also discussed by several commissioners:

. . . they feel like their funding’s been cut and they’re asked to do more for less . . .

Commissioner D, CCG

Medicines lists and their variations took much time and effort to agree across stakeholders and often required review after considering medicines shortages. Challenges with identifying and maintaining commissioners’ relationships with key stakeholders, such as LPCs, hospices and CD-accountable officers, were also discussed, as well as ensuring that individuals were working with a common goal when agreeing specifications, namely the medicines to be supplied:

So, when we initially started the group everyone came with their own agenda . . . the challenge is getting all the stakeholders on the same page . . .

Commissioner G, NHS England

Facilitators of improving medicines access through commissioned service provision

Local pharmaceutical committees were perceived by commissioners as helpful, acting as a point of contact for pharmacies and an information resource. When staff in pharmacies were dedicated to service provision, services were seen a pleasure to commission. Views of commissioners varied in where they thought this service should be commissioned from; however, most agreed that a single national service would prevent unnecessary duplication of time and effort:

. . . but it doesn’t make a lot of sense for every single CCG to have a slightly different service. And things like the list of drugs, you know. The amount of effort that goes into deciding that and there’s no reason. A patient being treated with palliative care is the same in any part of the country, aren’t they . . . ?

Commissioner A, CCG

Against a context of, overall, positive CP evaluation of the service, improvement suggestions from CPs included the provision of periodic training, extended roles for pharmacists with prescribing, greater communication and integration within the MDT, and mechanisms (e.g. administration, stock and supply) to enhance the efficiency of the service.

Feedback from service users

No commissioned service had any formal route for service user feedback. Some informal HCP negative feedback about medicines supply was investigated by a NHS England commissioner, but as another commissioner recognised:

Probably at that time of a patient’s life you are not going to then write to me and complain, you just want to get the drug and there are different priorities, aren’t there . . .

Commissioner E, NHS England

Awareness and knowledge of the service

Across cases, there was a lack of awareness of commissioned services. The exception was among the TSL case staff who all knew of the services and how to access a list of pharmacies and their opening hours. Overall, however, when there was HCP awareness of the existence of this service, there was a notable lack of knowledge of which local pharmacies provided this service, opening hours, medicines commissioned and stock levels that pharmacies should hold.

Nurses (particularly CNSs) generally knew where to locate a list of commissioned pharmacies, but some were unsure how current these were. GPs, if they knew of the services’ existence, were not aware which local pharmacies were commissioned services and neither were CPs who did not provide a commissioned service themselves.

Impact on patient/carer experience of access

When HCPs were aware of the service, CNs and CNSs spoke positively of its utility for patients and carers accessing medicines. The HCPs perceived the service as able to make ‘such a big difference’ for patients, preventing escalation via unnecessary visits to accident and emergency (A&E) departments and hospital admissions. For both groups of nurses (i.e. CNs and CNSs), the service had the potential to prevent families ‘struggling to get the drugs and going from pharmacy to pharmacy and feeling really distressed and upset’ and wasting ‘precious time’ that could be spent with the patient (palliative care CNSs 001–007).

Perceived issues with service delivery

Community nurses highlighted that commissioned pharmacies were ‘not always’ able to dispense what they needed from the service list. One CN said that ‘you ring them up and say “oh, you’re the nominated chemist” . . . they’ll say “oh, we’ve got that, but we haven’t got that”’ (CNs 005–009). Palliative care CNSs expressed similar insights, perhaps because both groups were the most likely to utilise the service on behalf of patients and their families, noting that service effectiveness depended on how well the medicines were actively stocked:

I’ve found that they’re the ones that are meant to help, things still need to be ordered and actually the other local pharmacy has been much more helpful and been able to get it quicker.

CNS, HPGroup1, Case 2

Telephone support line staff, such as palliative care CNSs and CNs, spent a great deal of time telephoning around pharmacies to source stock and had not necessarily experienced better levels of stock in commissioned pharmacies.

Furthermore, many HCPs (in cases 2 and 4) reported few or no services in their area, and because of this the more local and well-known pharmacies were used instead.

Awareness-raising of the service

Awareness-raising appeared to be hampered by commissioner concerns regarding the CD stock and, therefore, security of the pharmacies, and so knowledge levels of the service among HCPs were low. Unsurprisingly, given the low levels of awareness and understanding of the service provided, signposting to these pharmacies was not often referred to, apart from by CNSs and some CNs. These CNSs and CNs discussed signposting patients and their families to the commissioned service pharmacies nearest them (but only if they had already checked that required medicines were in stock). Such signposting was further complicated by some HCPs questioning the ethics of advertising one pharmacy over another, with HCPs stating that they would do so only if the pharmacy was known to have medicine unobtainable elsewhere:

We’re not supposed to recommend a pharmacy actually. It’s got to be patient choice and we’re not supposed to influence but having said that if it’s in the best interests of a patient who needs medication and they can’t get hold of it then yes I would . . .

CN HP06, Case 2

Patients and carers

In addition to the eligibility criteria in other case sites, patients were registered with the TSL service and had contacted this service at least twice.

Health-care professionals

Health-care professionals who were working with EoL patients in the TSL and wider services (e.g. community teams, hospices) in a geographical area commissioned by a single CCG. HCPs were identified by patients (as being key in their care) and by snowball sampling and networking.

Activities to aid access to medicines

The TSL team worked with community, hospital and hospice services to resolve issues that patients contacted them about. Activities of the TSL team typically related to accessing medicines and included:

• co-ordinating a prescriber home visit (or request to a GP/NIP/hospital medic to write a prescription)

• liaising with community pharmacies and hospital dispensaries to source and reserve medicines

• arranging home deliveries from community pharmacies.

The TSL team selected a route to a prescription that was the fastest and most convenient route for each patient, considering their clinical record, the issue, availability of carers, time and day, geographical location and availability of services.

In addition, TSL staff were able to work proactively with patients who were vulnerable or isolated, reminding them to take medicines:

He was saying he had too much pain . . . because he’d not been taking his medication . . . so then we were prompting him to make sure he took his pain relief . . .

TSL group 1

Patients used the TSL to obtain a home visit or practice appointment, resulting in the diagnosis of symptoms and ensuing prescriptions. Few patients had used the TSL more than once for medicines access, but envisaged further use nearer the end of their life. Patients said that they felt confident in navigating systems to access medicines or that HCPs would do this on their behalf. In addition, patients expressed confidence that the TSL would navigate services for them when the need arose.

Facilitators of medicines access

Issues encountered

Average cost per patient per pharmacy providing commissioned services

The commissioned services cost per pharmacy was estimated using the service-level agreement retainer fees from a convenience sample of nine CCGs across England. The population that each CCG is expected to cover was also recorded alongside the number of patients registered to receive palliative care support and proportion of pharmacies offering the services. We used this information to estimate the average retainer fee cost per prescription. Set-up fees and reimbursement costs for expired stock were not included (see Appendix 26, Table 34).

Stock management

To ensure continuity of medication supply to patients, some participants pre-emptively engaged with their stock management:

We generally take a proactive approach to medicine stock holding. So, I suppose the phrase is we’d rather be looking at it than looking for it . . . we carry a significant range of controlled drug medicines and medicines that might be required in end-of-life situations . . .

CP10, independent

For others, a more traditional approach to stock management was taken, reducing pharmacy stock levels (and overall stock value) while maintaining enough stocks to meet anticipated local need (derived from prescribing data).

Anticipating and/or triaging of prescriptions

Some CPs discussed how, on occasion, they anticipated prescriptions being sent electronically (via EPS) to the pharmacy to facilitate supply at the weekend for patients, whereas others discussed how they triaged (and prioritised) prescriptions for patients they knew to be in the last year of their life:

It’s a very community-based pharmacy so we tend to know who is poorly and who is getting worse and we might look for scripts and certainly if I see their names, I will immediately pull them out . . . so you are triaging constantly . . .

CP09, large multiple

Patients and families

Often embedded in respective communities via well-established businesses, CPs sought to facilitate seamless care through the provision of medicines to their local EoL populations. Some CPs had developed relationships with patients and their families over numerous years:

I know all the patients by first name, I’ve been here for many years . . .

CP11, independent

Other health-care professionals

To provide care and medicines access, some CPs worked to develop and maintain relationships with a myriad of relevant HCPs (e.g. local GPs, palliative care CNSs, CNs and other pharmacists) with varying levels of success:

. . . specialist nurses, community nurses, community matrons . . . all call in to us, we supply them, we help them, we deliver, we call out. We do as much as we can to help them . . . There are strong relationships with those people . . .

CP16, independent

The lines of communication are nowhere near as good [as in the past]. But this again is because people are going around chasing their tails . . .

CP15 independent

Relationships with local general practices, and GPs, were unanimously viewed as crucial. This was particularly the case when prescriptions needed to be changed by the GP prescriber, with the pharmacist recommending available medicines options or requesting a review of the medicines:

We’d often contact the GP on their [patients’] behalf and just try and bridge communication gaps so that patients are not left frustrated without medication . . .

CP07, independent

Despite this need for relationships, contact with general practices and GPs could be problematic. For many, speaking to the GP directly was a lengthy process and so most either e-mailed or sent a note to the receptionists at the practice to pass to the GPs. This meant that messages were not received until GPs were out of surgeries. Relationship-building appeared easier for CPs co-located next door to a general practice, as staff within the pharmacy could physically take the prescription request to the practice.

Use of key wholesalers/distributors

All CPs spoke of using key WDs for supply into their pharmacies (usually one, occasionally two, as first-line options). The use of key WDs could also facilitate communication and relationships between the pharmacy and WD:

[Where] a medication has been out of stock and it comes back in stock and the suppliers tend to give us a call letting us know that this is back in stock ‘would you like to take an order before the stock runs out?’ Which is very helpful . . . You can only get this when you do have a good relationship with them . . .

CP03, independent

Decisions about which WDs were used hinged on cost, availability and speed of supply, and some CPs explicitly referred to using a protocol-based decision-making system.

Information technology systems

Supply was facilitated by pharmacy IT systems for stock management and/or for placing orders with WDs. The extent to which pharmacies used IT systems to manage their stocks varied, but all pharmacies placed orders with WDs via online systems. Only a few SLs did not provide any online ordering platform. In general, online ordering systems were perceived to facilitate supply:

The online ordering systems are very good. Send an order, instant reply, yes it’s in stock or no it’s not . . .

CP21, large multiple

Time to delivery

Community pharmacists were generally satisfied with the time to delivery offered by WDs. All FLs were able to provide twice-daily deliveries and SLs provided once-daily delivery (with some also able to provide twice-daily deliveries).

Community pharmacists emphasised that when orders needed to be placed to fill a prescription, if WDs had their own stocks then delivery could be that same day for orders placed before the respective cut-off time:

It just depends on whether we order it in time before our cut off. For one of the wholesalers I think it’s 11.30, one it’s 12.15. So, if you order it before then then it will come in a few hours . . .

CP24, small multiple

Once the cut-off time had been crossed, then delivery into the pharmacy would be for the following day. Ability of the WDs to provide same- or following-day delivery was perceived to be as good as possible, considering the need for supplies to be transported from distribution centres/warehouses. When third parties were used to place orders, then generally supply would be for the following day.

Sourcing stock from other pharmacies

When pharmacies did not hold stocks of the required medicines, or could not source them via WDs, most CPs contacted other pharmacies on behalf of patients. CPs spoke of contacting nearby pharmacies that were part of large multiples because of their likelihood of holding more extensive stocks and their ability to contact other chain branches. In addition, most CPs referred to the use of community pharmacy networks, often run via instant messaging applications:

If anything goes short . . . we now WhatsApp [Facebook, Inc., Menlo Park, CA, USA] . . . it’s a big group of 20 of us . . . somebody has got them in stock, and they [pharmacy staff with the product in stock] bring it to us. That way . . . we can help each other . . .

CP11, I

Medicine shortages

Medicine shortages were, generally, a universal challenge experienced by CPs, potentially exacerbated by Brexit (i.e. the UK’s exit from Europe). A lack of information surrounding medicines shortages was problematic, with CPs having to seek information via various sources, such as professional organisations, rather than from WDs and manufacturers. This contributed to the pharmacists’ workload and to further delays in accessing medicines:

If I give them, the wholesalers, a call . . . they just say, ‘we’re not getting it back until this date’ and that’s it. They don’t really tell you what’s going on. Really what I have to do is search online through the PSNC [Pharmaceutical Services Negotiating Committee] and obviously various pharmacy channels to see what’s happening, if it’s a manufacturing problem, if it’s a licensing problem or there’s another issue . . .

CP05, small multiple

In relation to palliative medicines specifically, CPs reported varying difficulties related to shortages, ‘which is more distressing . . .’ (CP07, independent), but ‘. . . we haven’t experienced the problems that we’ve seen in other parts of our business with non-availability of drugs generally . . .’ (CP12, small multiple). It appeared that some CPs had successfully weathered palliative medicines shortages because of the efforts they and their pharmacies put into sourcing medicines, sometimes from all over the world.

Medicine shortages led to quotas being imposed by the WDs and/or manufacturers. These quotas were perceived as a hurdle that the CPs had to navigate to gain supplies, and were often harshly viewed as creating additional work and causing a delay in supplying to patients:

Often we’re having to fax anonymised prescriptions to a quota team which has been set up by the mainline wholesalers who then ration out stocks . . . We’ve had a patient on phenytoin suspension, in the last year of her life . . . It’s been a challenge to get hold of that for her family. So, we’ve had to contact [named manufacturer] directly to get supplies issued . . .

CP07, independent

Community pharmacists highlighted that any shortage in the market would drive up the price of the respective medicine. This was a key issue because of professional obligations to supply the medicines, but prices frequently exceeded the monthly stated Drug Tariff price (i.e. purchase cost to the pharmacy exceeds reimbursement price). In addition, at the time of purchase, CPs did not know whether or not a price concession would be granted retrospectively and at what price. This led to profound consequences, with pharmacies dispensing such medicines at a loss, contributing to some pharmacies operating at a loss overall. Alternatively, medicines were returned to the WD because the purchase price was deemed too far in excess of the Drug Tariff price, leading to delays in patient access:

As soon as something becomes short in the market the prices go sky-high . . . Sometimes we’re getting reimbursed £1 for it and we paid £20 . . . you’ve got patients who need their medication, so you take a gamble and order it in and hand it out and just hope for the best . . .

CP19, independent

When medicine shortages occurred, CPs perceived placing a request for a prescription change via the prescriber as a ‘last resort’ once they had exhausted all avenues for supply. It was apparent that getting a prescription changed via the prescriber contributed to delay in medicines access for the patient.

Need to use multiple wholesalers/distributors

Although utilising key WDs was a facilitator to supply, conversely, the need to use multiple WDs (range 2–16, median 5) acted as a barrier, with CPs endlessly having to shop around ‘from one to another’ (CP14, independent). This precluded straightforward supply, adding complexity to supply chain routes into pharmacies and contributed to the onerous workload of CPs. The necessity to use multiple WDs was part of the context of medicine shortages:

. . . so, over the last year we’ve increased it by three wholesalers . . . short-liners, just to give us extra options if we can’t get hold of things . . .

CP19, independent

Community pharmacists also perceived that Solus agreements (i.e. when the manufacturer uses a sole/single WD to distribute their products) contributed to their need to use numerous WDs. They were often critical of such practices, describing them as monopolies or restrictive practices:

It annoys me intensely that something like midazolam we seem to only be able to get through one particular wholesaler . . . The fact that we have restrictive practices in what wholesalers can supply seems to fly in the face of all logic to me . . .

CP15, independent

For some CPs, mainly those in independents, it was only their pharmacies’ use of numerous WDs that enabled them to accommodate such Solus agreements and access the full range of medicines prescribed for patients during the last year of life.

Lack of communication and relationships with wholesalers/distributors and manufacturers

Another barrier to supply was the lack of meaningful communication (two-way information transfer underpinned by trust) with WDs and manufacturers, and the consequent lack of relationships. CPs highlighted that when they needed to speak to WDs, particularly regarding medicine shortages, they did so by telephoning the respective company’s customer services team. It was relatively rare (according to CPs) for WDs to contact CPs and so communication was generally pharmacist initiated. Telephoning service centres was time-consuming and like telephoning a ‘call centre’, not knowing who they were talking to:

It’s always the telesales consultants . . . There’s no clinical knowledge there at all . . . that’s just how it works, you just phone up, have you got so and so, and they’ll say yes or no . . .

CP17, large multiple

The lack of clinical insight held by those answering the telephones at WDs was an issue for some CPs because they did not appear to understand the urgency of palliative medicine supply:

It used to be quite some time ago that when you’d speak to someone, they’d have more of an awareness about the medication . . . Now there’s less . . . so, they may not understand how urgent it is . . .

CP23, large multiple

Furthermore, a lack of understanding could preclude the WDs’ sales staff searching for alternative options and a total reliance on their IT systems:

We look at the product and go right eight different manufacturers they all come with their own seven-digit PIP [Pharmacy Interface Product] code and we’ve been in situations where we’ve read each code out on the phone and they’ve gone ‘no, no, no, no, oh the fifth one is in’, brilliant. ‘Is your software not searching for it’ . . .?

CP06, independent

This lack of meaningful communication and information exchange precluded relationship development between CPs and WDs, and this was a fundamental barrier to supply:

I don’t think you do have a relationship with them, not like you used to. There are no reps that come round. I wouldn’t even know who my account managers were anymore with these big companies [FLs]. Never see them. Never ring up or anything . . .

CP14, independent

This appeared to be underpinned by mistrust on the part of the CPs towards WDs and manufacturers, triggered by conflicting cultures and priorities. The CPs argued that they were primarily focused on patient care and needs (and accountability to the patient), whereas CPs perceived the WDs and manufacturers to be focused entirely on commercial priorities:

[To get access to medicines] . . . I have to jump through hoops, spend time which equals money, takes me away from looking after patients and all of my staff away from looking after patients to try and source medication or products . . . they’re commercial operations looking to make the most that they can out of what they’re doing . . .

CP16, independent

Shortcomings of ordering systems

Despite IT ordering systems being a facilitator of supply, many CPs identified shortcomings of online systems:

A lot of times I’ve given [named FL] a call and I’ve said ‘oh yes I placed the order online’ and it said it went through and they were like ‘oh well yes we only had this reserve amount and you are number 40 something and you will be waiting for it’.

CP02, small multiple

Community pharmacists stated that the majority of orders could be dealt with solely online, but as soon as there was an issue (e.g. the product being identified as out of stock), then they would need to ring the WD (e.g. to find out if there was a date the product would be back in stock). Other reasons for needing to telephone the WDs were to find out about specific brand availability, expiration dates of the product, the price of the product (as prices altered daily), where a product was low in stock if they actually had it, if the product was a switch line (i.e. switched to supply from a different warehouse/distribution centre and, therefore, how long it would take to be delivered), and where a third-party order platform was used to ascertain availability (as in such cases availability of products was not stated on the platform system). The telephoning round WDs, although it did not occur for most ordering, was perceived as hugely time-consuming to gain ‘definitive answers’ and source product for the patient.

Disincentives to stocking palliative medicines

Pharmacies from which the CPs operated varied widely in the number of prescriptions dispensed per month (see Appendix 29, Table 41) and so, for some CPs, a lack of stock turnover of palliative medicines was a strong disincentive for stocking such medicines:

The hurdle is that the medication are usually high value, so pharmacists don’t tend to keep them in stock. They’re also not commonly prescribed, you don’t know which strength they’re going to be . . .

CP17, large multiple

Related to this were the associated costs of the medicines and the lack of a long shelf life for some medicines. CPs could also be concerned of the risk of the medicines not being collected by patients or their families:

Some of these medicines are not very long dated, like midazolam and stuff aren’t. And then you get some stuff that you are never going to use, like . . . glycopyrronium injections . . . if they’ve not collected it . . . one or two of these injections can be £70/£80 . . . a lot of small businesses they’re marginalised as it is at the moment and with small operating margins can they afford to do these medicines . . .

CP08, independent

Some CPs discussed disincentives specific to stocking CDs often used in palliative care, including legal requirement to store the medicines in locked cupboards, the inability to return CDs to the WD when the medicines were not collected by the patient/family and the requirements around the destruction of out-of-date Schedule 2 CDs (subject to full CD requirements). In the main, disincentives revolved around the implications (e.g. cost) of medicines not being collected.

Lack of weekend ordering and Sunday deliveries

Community pharmacists who worked at weekends and worked in stores with Sunday (or bank holiday) opening emphasised that supply into community pharmacies over weekends could be an issue for patients:

I’ve had occasions where you might get the prescription on the Saturday and obviously because wholesalers are closed weekends you can’t get a supply in until Monday . . .

CP04, small multiple

Although pharmacies usually had one delivery (per WD) on a Saturday, the inability to place orders over the weekend and the requirement to wait for Monday’s deliveries was a barrier to supply into pharmacies and, ultimately, medicines access over the weekend.

Issues with wholesaler/distributor deliveries

Some CPs referred to occasional issues with deliveries into their community pharmacies:

Traffic jams and snow. They’re very rare. Usually the wholesalers are decent enough to phone us and say look the M25 there’s been a crash your delivery won’t be there, or your delivery will be in at 17.00 today.

CP06, independent

However, for others, delivery issues appeared more frequent, particularly in relation to missing products from orders that that goes unnoticed until a delivery arrives.

Commercial and quality drivers

Most WDs discussed commercial and quality drivers as important in gaining community pharmacy business. Three large national wholesalers provided a FL service of all pharmaceuticals, including palliative medicines, in contrast to SLs that provided a limited range and usually at a competitive price. Competition in the branded medicines market was more limited, with three FLs mainly competing for manufacturers’ business. Competition was based on winning business from their competitors, as they all serviced the same customer group. Some participants discussed Solus or dual arrangements, which, according to interviewees, assured continuity of supply from the WD:

. . . If we’ve got one source of supply that goes through to one distributor and then to the end-user we can keep a much tighter rein on where that stock is, how is it supplied, control of that stock, control of purchasing . . . There’s a lot of benefits of having a very tight and secure supply chain, assured supply chain . . .

WD05, FL

Solus or dual arrangements were, therefore, perceived to generate more secure business:

Commercially it’s better for us to get all of the volume where you get 100% market share [Solus contract]. We’re in a volume-based business so this brings us volume.

WD03, FL

Despite this perception, the Solus contract could increase the risk of supply failure, as the product could not be accessed by pharmacies via other WDs.

Commercial drivers also dictated the discount awarded to pharmacies based on the volume of stock purchased from WDs. Within the Solus contract there was less of a need to be competitive, being the sole supplier, and so any discounts applied were based on commercial decisions.

Inability to secure sufficient stock levels was considered a commercial ‘faux pas’, as it had a negative impact for the business as a commercial enterprise (i.e. not having assets to sell) and also resulted in not being able to offer the expected service to patients. WDs struggled to differentiate within the market, offering very similar services:

I suppose we don’t really compete on availability we compete on other services for pharmacies so I suppose healthy competition between wholesalers will improve the availability of product if product is available in the market . . .

WD01, FL

Quality improvement of service, facilities and infrastructure was one of the key means to maintain a WD’s competitive position and increase the volume of stock sold.

Relationship-building

All WDs noted the importance of relationship-building in facilitating medicines access, whether through formal agreements or contracting arrangements with manufacturers, day-to-day relationships with community pharmacies (via sales and customer service teams) or informal communications and networks. Relationships were stated to support regular dialogue, with a two-way flow of information and feedback on problems and issues up and down the supply chain:

I think ultimately it’s about good communication and good dialogue between all of the people that sit in the supply chain . . .

WD04, FL

Upstream relationships with manufacturers/suppliers

Contracts or agreements with manufacturers/suppliers could provide assurance of inbound stock to WDs; however, formal contracts were not universally used because of manufacturers/suppliers not being able to guarantee to supply against an order (e.g. owing to adverse weather, shortage of raw materials or quality audit failure). When supply disruptions were envisaged, manufacturers were responsible for informing and communicating this information to the Department of Health and Social Care (DHSC):

What does work very well is when the manufacturers help us and let us know when they’ve got a [shortage] problem because that allows us to make alternative arrangements . . . from time to time it could be better and that’s always something we’d work together with.

WD03, FL

Downstream relationships with pharmacies

Wholesalers/distributors reported that community pharmacies accessed information on medicines shortages from online ordering systems and customer services teams. This was viewed as a two-way conversation through telesales or sales representatives providing feedback to WDs and manufacturers. WDs reported that they had a strategic role to put pressure on manufacturers when shortages were identified by pharmacies. WDs argued that they benefited from their role in this triad by transferring information (e.g. regarding changes in prescribing patterns) from pharmacies upstream to manufacturers. This could instigate proactive responses from manufacturers regarding production plans/stock level holding:

We will inform them [pharmacies] of supply chain issues from our side in terms of procurement from manufacturers and likewise they will communicate back if they have again noticed any changes in prescribing habit or difficulties that other suppliers in the UK supply chain are experiencing.

WD08, SL

Collaborative relationships

A few WDs discussed good practice in supply chain management when severe medicines shortages, such as with diamorphine injection, had been co-ordinated nationally via the DHSC Medicines Supply Team and NHS England and NHS Improvement (NHSE&I) Commercial Medicines Unit. There was a willingness to work collaboratively to get medicines to patients, setting aside competitive relations in response to the shortage:

I think that . . . where there has been a problem where we’ve seen collaboration across the commercial medicines unit the DHSC and the manufacturer and ourselves as wholesalers in the middle I think it’s probably when we see best practice.

WD03, FL

Relationships between WDs, manufacturers and community pharmacies were viewed as extremely important in supplying palliative medicines, and WDs reported acting as a point of mediation in the supply chain.

Investment in logistics infrastructure

All WDs identified logistical issues in the pharmaceutical supply chain as critical in ensuring medicines access at EoL. There was emphasis on the requirement for WDs to deliver on time and in full so that they could be responsive to community pharmacies’ and patients’ needs. This was facilitated by contracting with reputable haulage firms familiar with regulatory governance, investing in logistics infrastructure and by having a clear visibility of stock levels:

We’ve invested a lot into the logistics side of things to ensure that they get to the patient in every bit as good condition as they arrived into us . . .

WD08, SL

Wholesalers/distributors reported that high-quality logistics infrastructure ensured that stock could be delivered with increased certainty and that orders would be delivered on the same or next day, on time and complete.

Demand and stock management

Wholesalers/distributors sought to ensure supply continuity into community pharmacies, with a key element being access to stock within the UK market and, if there was a shortage, their ability to source an alternative product outside the UK. If the product was generic, then there tended to be a greater source of alternative suppliers. If a product could not be sourced, then it was because it could not be found (as opposed to no attempt made):

. . . majority of time that shortages occur are about not having the product available for supply and that’s down to maybe raw material, maybe choice and allocations to different countries, maybe production issues . . .

WD05, FL

If we can’t get hold of one drug, we’d probably work with another company that had got a competitor drug . . .

WD02, FL

Wholesalers/distributors advised that they shared their demand profile and activity with manufacturers to inform manufacturing capacity management. This information transfer aimed to ensure that stock levels were as needed and that medicines shortages did not develop.

The majority of WDs described complex systems for managing stock in response to forecasted demand.

Transparency regarding customer demand patterns, stock holding levels and locations of stock meant that WDs could adjust stock levels throughout the country in distribution centres to respond to spikes in demand.

Buffer stock availability

Most participants discussed how buffer stocks (i.e. stocks within the UK and Europe) had an important role in adding resilience into the supply chain to facilitate medicines access. Holding buffer stock could be recommended by the manufacturer to the pre-wholesaler if they expected a product shortage or it could involve the WD transferring stock between distribution centres (ensuring quicker response times for orders and equitable distribution):

They [pre-wholesaler] hold a buffer [stock] which normally means that there is strong supply into the market .

WD01, FL

Wholesalers/distributors reported that stock availability was always dependent on manufacturer production schedule and lead time for distribution. SLs were noted to fill a gap when FLs were devoid of stock to maintain supplies into community pharmacies.

Supply chain disruptions

Manufacturers’ commercial decisions on where to send their product worldwide (influenced by UK regulations, medicines pricing and the value of sterling) had an impact on supply. These commercial decisions, together with globalisation of manufacturing sites, meant that WDs could have limited supplies of medicines, leaving them unable to meet customer demand:

A manufacturer . . . producing products on a global basis has many choices to make . . . in terms of how many places around the world is that product manufactured . . . if that is only one or two units . . . and those units have problems then that has a worldwide implication of non-availability of stock.

WD05, FL

Many of the WDs referred to shortages that had an impact on their ability to supply customers, requiring WDs to source alternatives and increase stockholdings of other products. WDs expressed concern about supply assurance regarding palliative medicines:

We’re concerned . . . that manufacturers will . . . choose not to supply the drugs to the UK because they will be able to make more money supplying it elsewhere in the EU [European Union]. So . . . the supply chain . . . is a really big worry and for palliative care medicines that’s especially important. This isn’t something where you can order something in and wait 2 months . . . it’s being ordered because it is needed there and then and once you’ve missed that chance to support the patient at that crucial moment in their lives that moment has gone.

WD06, large multiple

Strategic drivers

Strategic supply influences that acted as barriers included generic medicines, quotas and storage capacity, all of which influenced WDs’ decision-making.

Downstream issues

Participants reported instances of downstream issues that affected the supply chain. These issues included export trading by pharmacies, product switches, geographical differences in palliative medicines lists, speculative stockholding by pharmacies, changes in prescribing habits and stockpiling by patients due to a lack of understanding about the supply chain.

Upstream issues

The inability of manufacturers to adequately predict operational issues or forecast demand led to production issues and shortages of manufactured stock. WDs considered the notice period and delay in release of information from manufacturers/DHSC problematic, reportedly due to commercial sensitivity of information. WDs considered that there was not always enough time to make alternative arrangements (e.g. ordering in alternative products) to maintain supplies into pharmacies, and worked closely with manufacturer account managers to try to assure product availability.