‘A wicked problem’: tackling variable access to urgent palliative care medicines

“Me and my sister would drive huge distances late at night, completely exhausted, trying to find a chemist that could dispense the drugs. Nobody came out to deliver them or administer them or call in to the house or coordinate anything,” says Kate*, describing her experience of trying to access palliative care medicines for her father during his end-of-life care.

In a report from the charity Marie Curie, ‘Better end of life 2024: Time to care in England’, published in September 2024, Kate explains that the lack of support and coordination from palliative care services made looking after her father at home challenging^​1​.

“It was just so chaotic. If it was a weekend, there were never enough staff there, just the on-call people. We had to do the running around ourselves.

“I was struggling managing work and running to and from the hospital. Between me and my sister, one of us would always be there helping out,” she says.

“I honestly don’t know to this day whether there were things my dad could have had to make the whole process easier on him and easier on us, because nobody really ever came to the house.”

Marie Curie estimates that, if the proportion of people requiring palliative care remains the same, the number of people with palliative care needs in the UK would increase by more than 147,000 between 2023 and 2048 — a rise of 25%. This would mean that, by 2048, more than 730,000 people will die annually with palliative care needs; however, the charity says this is likely an underestimate because it does not account for demographic changes, including people dying at older ages with complex conditions^​2​ (see Box 1).

“It’s a wicked problem,” says Ben Bowers, a clinical academic community nurse with the University of Cambridge and Queen’s Nursing Institute, who specialises in palliative and end-of-life care. “It’s one of those problems that is multifaceted and it’s really difficult to solve.”

“More people are dying at home… [and] we’ve got an overarching trend on the number of expected home deaths, which is going up and will continue to go up. So, we need to find viable solutions at scale,” he says.

Community access

According to Marie Curie’s ‘Better end of life 2024’ report, most end-of-life care occurs in the community, with 64% of people spending most of the last three months of their life in a private home, 24% in a care home and only 7% in hospital^​1​.

But Ruth Driscoll, associate director of policy and public affairs for England at Marie Curie, says access to critical medicines in the community is a “massive issue”.

In 2022, responses from a Marie Curie survey of NHS staff in 60 areas, covering around half of the UK, revealed that only 25% of areas surveyed had a pharmacy open throughout the night to dispense palliative care medicines, while 55% had a pharmacy open for some of the night^​6​.

The survey also found that only 30% of areas had healthcare professionals who could administer these medicines throughout the night, with 68% having availability during some of the night^​6​.

“As a result [of not getting their medicines on time], people are having to call an ambulance or come into A&E because they’re reaching a crisis, which are, what we feel, avoidable hospital admissions,” explains Driscoll.

She points out that access is even more challenging in the most deprived and most rural areas of the country, owing to reduced numbers of out-of-hour services and increased travel distances.

Cutbacks to community pharmacy opening hours are also making it difficult to access palliative care medicines in some areas. An analysis of NHS Business Services Authority data by The Pharmaceutical Journal found that the number of community pharmacies open for 100 hours a week or more in England has dropped dramatically from 942 pharmacies in December 2022 to just 86 pharmacies as of September 2024.

“We often hear about families contacting or going around various pharmacies trying to get medicines. So, even after you’ve got a prescription, physically getting the medications filled can be a huge burden for families,” says Sarah Cox, palliative care consultant lead at Chelsea and Westminster Hospital and president of the Association for Palliative Medicine of Great Britain and Ireland.

“It’s also very difficult for community pharmacies because keeping these drugs can be expensive.

“And when these drugs expire, which they frequently do before they are dispensed, you lose more money than you get from the commissioned income. So, it’s a service that pharmacists are doing as a goodwill gesture,” she states.

National pharmacy scheme

To make access to these medicines more consistent across England, the Pharmacy Quality Scheme (PQS) 2023/2024, published by NHS England in June 2023, outlined that community pharmacies must routinely hold 16 palliative care and end-of-life critical medicines by 31 March 2024 in order to claim a share of the £45m funding available^​7​ (see Box 2).

Contractors who were not stockholders of these critical medicines could still claim payment under the scheme if they could support access to these medicines by completing an action plan.

Despite the national incentive, data gathered through a freedom of information (FOI) request sent by The Pharmaceutical Journal to NHS England revealed that only 47% of pharmacies in England routinely stocked the 16 critical medicines by the March 2024 deadline.

There was wide variation in the proportion of pharmacies participating across the 42 integrated care boards (ICBs), ranging from 31% in Bedfordshire, Luton and Milton Keynes (BLMK) ICB to 76% in Norfolk and Waveney ICB. According to data collected on the PQS 2023/2024 by the NHS Business Services Authority (NHS BSA), 54 pharmacies had no action plan to signpost patients (see Figure 1).

“The palliative care domain was introduced into the PQS to try to encourage consistency across the country, and so healthcare professionals could go on to the NHS website and see whether pharmacies have those 16 medicines in stock and direct patients to pharmacies,” explains Rosie Taylor, head of service development at Community Pharmacy England (CPE).

However, Taylor says that, while most pharmacies in England did not meet the palliative care domain of the PQS in 2023/2024, the number of pharmacies that provide access to palliative care medicines through locally commissioned services is likely to be much higher.

“The 47% of pharmacies who ticked the box in PQS would mean they need to have held all 16 medicines, so it might be that they held 15 as part of their local scheme, but they didn’t quite meet the criteria,” she explains.

According to CPE’s local service database, as of 2 December 2024, there are 114 locally commissioned palliative care services listed, many of which were launched before palliative care was included in the PQS^​10​ (see Figure 1).

“Looking at our database, there are lots of services commissioned locally and there is good coverage across the country,” says Taylor, adding that the local schemes are “really important for helping access to palliative care medicines”.

Local services

BLMK ICB, where only one-third of pharmacies meet the PQS palliative care domain, has had a local service in place for more than 20 years. Fiona Garnett, the ICB’s associate director of pharmacy and medicines optimisation, has concerns about the PQS.

“One, it’s a scheme for 2023/2024 and there is no scheme yet for 2024/2025, so there is no obligation for pharmacies to continue as they are not being paid for it,” says Garnett.

“We also have a concern over the medicines list, because it doesn’t contain glycopyrronium, a drug we use for excessive respiratory secretions. We felt that was an omission.”

Garnett also highlights the environmental impact of stocking and dispensing medicines such as oxycodone injections that are not used within the ICB, which could go out of date and add to medicines waste.

Instead of the national scheme, Garnett refers to BLMK ICB’s locally-commissioned ‘End-of-life care medicines service‘.

“We decided we were going to maintain a local service, even though it’s a cost pressure for the ICB. This has been in place for several years and was developed with prescribing clinicians and pharmacies,” says Garnett.

“The local service is very similar to the PQS, only we have a specific number of pharmacies that are geographically located across BLMK. They get a retainer fee and we pay for any medicines that go out of date.

“In 2023/2024, what we have found is that, by concentrating supply to high-volume pharmacies that have high turnover and a restricted list of drugs that match what we actually use, we can meet the needs of clinicians, patients and families, and we have very low wastage,” she states.

Garnett’s concerns around the national PQS are echoed by several other ICBs in the country. Black Country, North East London, and Frimley ICBs, which had among the lowest uptake of the national scheme, have all informed The Pharmaceutical Journal that they have implemented a locally commissioned service, better tailored to their region.

However, while recognising the value of local services in terms of flexibility to tailor offerings to local needs, Cox believes that “unless we have some sort of national minimum ask, it’s very difficult to hold ICBs to account for what’s being provided”.

Anticipatory prescribing

One way of overcoming the difficulties with accessing palliative care medicines, particularly out of hours, is to prescribe ‘anticipatory medicines’. In March 2017, the National Institute for Health and Care Excellence (NICE) published the ‘Care of dying adults in the last days of life’ guidance, which encouraged service providers and healthcare professionals to prescribe anticipatory medicines to enable rapid relief at whatever time a patient developed distressing symptoms^​11​.

In the UK, standard anticipatory prescribing, also known as ‘just in case’ prescribing, mainly involves four injectable medicines to treat symptoms of pain, nausea and vomiting, agitation, and noisy respiratory tract secretions^​12​.

These medicines, along with equipment and signed administration authorisation charts, are kept in patients’ homes or care homes, where they are made available for visiting nurses, doctors, paramedics or trained family carers^​13​.

“The whole practice of anticipatory prescribing of end-of-life injections is quite common now,” says Tarun Nayyar, senior clinical pharmacist at Birmingham Hospice.

“So, rather than managing a complete end-of-life situation on a Saturday afternoon or evening, where patients have no morphine at home, and then having to find someone to prescribe the drug, get the prescription and dispense, we try avoiding all that by pre-emptively doing a lot of this work in the earlier weeks.”

Nayyar explains that nurse and pharmacist prescribers regularly visit hospice patients at home and can prescribe palliative care medicines if needed, although he points out that most patients receiving end-of-life care are managed by GPs, rather than a hospice.  

While anticipatory prescribing is a well-established intervention in palliative care, a systematic review, published in April 2023 in the BMJ, found that there is inadequate evidence on the clinical and cost-effectiveness of these prescriptions^​12​. It is also estimated that between 40% and 54% of anticipatory prescriptions go unused^​13​.

The systematic review, led by Bowers, concluded that evidence is primarily based on professional perceptions that the intervention provides effective, timely symptom relief in the community and prevents crisis hospital admissions. It added that more data on the effectiveness and safety of anticipatory prescribing are needed^​12​.

Clinicians have also raised safety concerns around the potential for misuse of anticipatory medicines, risk of medicines being diverted to someone else, as well waste issues if they are overprescribed.

Despite concerns, Bowers says there is a consensus that anticipatory prescribing is a “good thing” and the focus should be on timely prescribing of anticipatory medicines, educating patients and their families on their medicines, and supporting independent prescribers by ensuring access to electronic patient records.

A national integrated plan

While community pharmacies, ICBs and charities continue to work on addressing access to critical end-of-life medicines through highlighting the challenges and providing local services, Bowers says a more holistic approach is needed to improve overall access to palliative care.

“In an ideal world, we’ll have more GPs, more pharmacists, and more nurses, but we’re in a resource-constrained environment.”

He highlights some schemes around the country that have single phone numbers that patients or their families can call to access all palliative care services.

“That’s quite an effective scheme,” he says. “[For example], if there is limited capacity for district nurses to see a patient urgently, seeing if there is capacity from paramedics, hospice services or GP surgeries, who could be there. That one number could also provide [information on] which pharmacies have got supply [of end-of-life medicines].

“We need to respond as an integrated system and not in silos, so we can best meet a person’s palliative care needs.”

While some areas are piloting a single point of access for palliative care services, Cox says that implementation at a national level would be “the dream”.

“I would love to see a national plan for palliative and end-of-life care, which included things such as: ‘An ICB must ensure that patients can receive timely administration of urgent medications within two hours at any time of the day and night’,” she says.

“Hopefully in the [new] NHS’s ten-year plan, that’s exactly the sort of thing that we can get to come out of this.”

*Surname not provided in the report.