Independent Review of Medicines Homecare in Scotland: review report and recommendations

Communication and collaboration

Feedback mechanisms

Recommendation 6: NHS boards, homecare providers and commissioners (Marketing Authorisation Holders and/or NHS Scotland National Procurement) have a timely communication mechanism to enable early resolution of issues. This recognises the complexity of current arrangements and is available to all stakeholders involved in medicines homecare in Scotland.

Homecare providers, commissioners, and NHS boards have been clear about a lack of tactical and strategic level communication and co-production as homecare services develop. All parties continue to reflect that the quality of care provided to patients is their key motivation, but there is a lack of structure and, to an extent, clarity of expectation on both sides of engagement, feedback, and improvement. This may be partly linked to a lack of experience in the relevant NHS board teams regarding “supplier management” (which is often the expertise of procurement teams) alongside the obvious complexity of a relationship which includes so many parties: commissioner, provider, board secondary care team, board pharmacy team, and NHS Scotland’s national procurement team. This need for a revised mechanism is linked to the recommendation above describing the requirement for greater clarity on accountabilities and responsibilities in the governance context.

The House of Lords report 2023 recommends “steps towards establishing a central resource of experienced procurement professionals to assist in establishing homecare medicines services. This must be available to all those establishing agreements, whether they are manufacturer- or NHS-funded.” [18]

There is a view that standards of correspondence and ‘closing the loop’ need to be agreed and enforced. Clarity of contact routes within NHS boards and between homecare providers and commissioners is imperative, and ownership of issues followed through with all parties (patient, homecare provider, commissioner, and NHS Scotland). Communication must be open and transparent, to the benefit of all parties particularly patients.

In 2022, there was a global shortage of medicines used to treat haemophilia. This highlighted two issues. Firstly, that the quality of communication between the homecare provider and the NHS centres was not of the required standard. Patients received conflicting advice from the two organisations. Secondly, the availability of clinical advice from the homecare provider was not at the required standard, for instance when the provided product changed in strength or frequency of administration. These issues could be mitigated through stronger feedback and communication.

"Partnership working is required between the NHS and the homecare providers to allow for long term, safe, growth.” (Pharmaceutical company)

"Both patients and [NHS board] teams have reported serious communication issues, whereby they face great difficulty in contacting homecare medicine services to report and investigate issues. With the negative impact missing medications can have on an individual’s health, it is hugely worrying that patients cannot contact homecare medicine services when they do not receive their medication or receive the wrong medication. Communication between patients, [NHS board] teams and homecare medicine services is poor, which leaves patients in the dark about when they will receive their medication and [NHS board] teams burdened with additional administrative workload.” (Patient group)

"As there are two different streams of commissioning services, this can present challenges. A significant proportion of services are commissioned by the manufacturer of the medication, where the manufacturer selects, contracts, and funds the homecare provider. This may not align with the desired provider from the Board’s perspective. Homecare Provider can also decline to provide a product on the NHS Commissioned framework, which may lead to utilizing a less desirable provider due to lack of choice. Each homecare organisation has their own procedures, policies, and paperwork. This variability can add a layer of complexity for NHS teams when communicating with patients and those involved in medicines homecare. The ability to escalate issues promptly and the capacity to provide urgent dispensing/delivery/nursing services varies between companies.” (NHS Board)

Responsibilities at the interface

Recommendation 7: There is immediate clarity of roles and responsibilities for engaging patients in medicines homecare to ensure that patient quality of care is always maintained.

Standards of care in stable settings are, in general, of a high standard across Scotland, in medicines homecare settings, and more broadly. However, it is frequently the case that the interface of care is where issues occur, and the quality and safety of patients can be compromised. It should come as no surprise therefore that this interface requires redesign not only in the technological approach to communication, but in the governance and responsibilities in these critical moments.

The Review heard from individuals and organisations regarding the initiation period for medicines homecare, which is highly variable depending on the processes within the prescribing centre, the provider’s systems, the clinical condition, medicine(s) and care package involved, and geography. It is common to have a delay of several weeks from a prescription being written by a secondary care clinician, to the first delivery of care by the homecare provider to the patient.

"Our members report waiting times for patients from referral to supply varies, but it can be as long as 4-6 weeks. Delays in patients commencing or switching biologic medications, with estimated delays of 6-10 weeks to initiate a new prescription.” (Pharmaceutical, medical or nursing professional, regulatory or representative body)

This raises two issues of equal importance. Firstly, there can be no doubt that a delay of this magnitude is unacceptable. This Review does not seek to apportion blame, but rather consider that better standards are required from all parties to ensure this period is reduced and that medicines are initiated quickly and robustly through efficient processes (in the context of enhanced communication methods described above). This will require thoughtful, transparent review, and cooperative action. It has become clear throughout this Review that there are several different points at which delay is introduced, emphasising the importance of cooperative review and improvement.

Secondly, this period of delay represents a significant clinical and governance risk. There are a range of clinical conditions treated by homecare medicines, which are at risk of serious exacerbations should there be a gap in prescribed treatment. This issue extends to a potential need for additional pain relief (for example), which in turn can have polypharmacy implications, significant clinical risk, and require titration work by clinicians and patients. We should be in no doubt that this is unacceptable and requires rapid and robust work to resolve.

There are intrinsic risks around governance and the care interface when utilising outsourced clinical care models, including those around medicines homecare and particularly in high tech schemes. This reinforces the importance of having nursing and medical representation in strategic and tactical groups, alongside those with responsibility for governance of services.

We should be equally clear that the accountability for care rests with the NHS board, and that prescribing and dispensing for this interim period is the responsibility of secondary care clinicians and hospital pharmacy teams. Under no circumstances should patients’ safety or quality of care be risked during the initiation period, however long this may be (and, as above, we should seek to ensure it is as short as possible).

"Capacity issues with the Homecare provider leading to delays in initiating new patients onto treatment, meaning the hospital is then required to bridge the gap in treatment to prevent delay in initiation of treatment.” (NHS Board)

The following sections discuss digital solutions both for management and prescribing, which are undoubtedly a part of the route to improvement both in accuracy and timeliness.

Many complex medicines are supplied within homecare services. Biologic medicines are both complex and expensive – an efficient system is therefore critical. This leads to NHS boards purchasing and supplying greater stock levels, which has an impact when medicines are provided on a loading basis in the initial stages of treatment. (Loading involves higher doses at first, to get the patient to a stable level of management, before dosage reduces). The VAT implications, storage costs and an occasional element of ‘double payment’ due to the homecare order and NHS board provided supply running in parallel, are a burden on NHS funding.

Immediate digital solutions

Recommendation 8: Rapid national assessment is required in consideration of the adoption of existing, and widely available, digital technologies to enable an immediate move away from paper-based communications within and between medicines homecare providers and NHS Scotland.

The disadvantages of using paper-based processes, including the loss of paper prescriptions within a system, is a concern much more widely than homecare. Nevertheless, given the substantial number lost each year and the distinct nature of the service, it is appropriate that consideration is given to areas of improvement. The impact of delays or the loss of prescriptions being dispensed and delivered to patients causes disease flares, unnecessary bridging therapy, anxiety for patients, and additional clinical appointments. This was a recurring theme in feedback from stakeholders, across a variety of groups.

"At present, medicines homecare has paper-based processes – this is largely due to the requirements for a “wet signature” on prescriptions as the current systems do not meet the requirements for Advanced Electronic Signatures. Digital solutions are being developed within the UK, however the process to introduce new digital systems within NHS Scotland is unclear at present and has been a lengthy process in the past.” (NHS Board)

"E-sign could provide real improvements to the patient pathway through more effective transmission of prescriptions”. (Other)

"The National Clinical Homecare Association (NCHA) approved a Prescription E-Signature Hub (RxESH) to support electronic transmission of homecare prescriptions. This will only offer a limited benefit as it will not integrate fully with the NHS IT systems. The individual homecare providers are at different stages of implementation.” (Other)

"To support increasing numbers of patients providers need to become more digitally enabled to be less reliant on people.” (Pharmaceutical company)

Recommendation 9: There is a standardised approach to developments and improvements of digital solutions within medicines homecare. This includes a robust and rapid approach to the approval of technologies, led and determined by the needs of NHS Scotland, for adoption and information governance.

Timely initiation is a key factor in care across several patient groups. There is clear need to set standards and invest in systems and processes which facilitate this. Current models can take several weeks between a clinician writing a prescription and the first supply arriving with a patient. This of course leads to a longer period of sub-optimal management and a negative impact on lives. It can lead to polypharmacy issues, for example from additional steroid or opioid use, which is not easy to reduce. There is also an impact on system efficiency as homecare helpline calls increase, requests to primary and secondary care are made seeking interim support, and staff in both sectors spend time investigating. From a patient perspective, delays (or a loss of paperwork) with prescriptions compromises faith and confidence in the entire system.

The landscape of medicines homecare management has seen an increasing number of digital portals being developed and implemented by homecare providers over the last five to ten years. This innovation, and particularly the move away from paper-based communication is to be welcomed as a principle. The challenge comes with the number of different portals and systems with which clinicians and NHS board teams are now required to interact – feedback suggests this is becoming difficult to manage and an industry, which is directly requiring investment in administrative staff. There is also a lack of interoperability between these systems and existing NHS Scotland Information Technology (IT) infrastructure, which requires a strategic approach to review. One of the results of this lack of connectivity, is that some components of the process inevitably return to a paper-based approach, which results in both delays and losses. These portals, and indeed the IT infrastructure behind them, must be of a high standard, and additional assurance is needed here – the Review heard of a system unable to manage multiple addresses for an individual, which is not acceptable for patients.

"We have also heard anecdotal evidence from clinicians that young people attending university or college away from home experience particular difficulties as homecare medicine services do not effectively deal with individuals with two addresses (home and university). We have heard about one patient who needed to travel from his hometown to university town to pick up their medication over the summer, and he ended up in A&E as a result of missing a dose.” (Patient group)

However, the benefits of electronic communication are clear, and this must be embraced, albeit in a more structured way than has taken place until now. Across the UK, a strategy is needed for this, and Scotland should be at the heart of its design and adoption. Existing portals should be explored on a pilot and evaluative basis – with a clear view that these systems are going to improve communication to the benefit of patients.

The House of Lords report 2023: “A single homecare portal should be created and provided by NHS England. If possible, this should be linked with existing online services such as the NHS App”. [18] NHS Scotland should also deliver links with the Right Decision Service, [29] ensuring this single point of access for clinical guidance includes information and guidance on homecare.

"Homecare providers are developing digital solutions to improve customer services and medicines homecare pathways which includes patient apps and clinical portals. A process to enable efficient Information Governance approval both nationally and at health board level would ensure all patients/ clinicians across NHS Scotland had access in a timeous manner.” (Other)

"Better use of digital technology that integrates with NHS services and systems [would enhance a providers ability to deliver effective medicines homecare].” (Pharmaceutical, medical or nursing professional, regulatory or representative body)

"Electronic transmission of prescriptions would be greatly beneficial for NHS and homecare providers alike. [We] would like to see NHS IT input at this early stage of development to allow the systems (provider and NHS) to be developed with interconnectivity and to ensure consistency across all homecare providers.” (Other)

"Adoption of new systems could be enhanced and accelerated through the utilisation of digital technologies and…would allow, for ‘real time’ electronic transfer of prescriptions between the NHS and homecare provider.” (Pharmaceutical, medical or nursing professional, regulatory or representative body)

Long-term prescribing platform

Recommendation 10: Secondary care-initiated medicines are prescribed via a nationally agreed digital solution, across all care settings, to enable digital connectivity between medicines homecare providers, NHS boards and community pharmacies. This must align with existing national digital prescribing programmes.

NHS Scotland is advancing on its journey towards electronic prescribing, and away from the currently legally required “wet” signatures on paper prescriptions. At present, paper prescriptions must be sent to homecare providers before a medicine can be dispensed and delivered to a patient. Prescriptions are sent via Royal Mail and courier companies are subject to a small number of losses.

It is critical that homecare providers are engaged through the development process for electronic prescribing pathways in Scotland, and that systems interoperability is robust and universal in this field. Once rolled out, it should be a requirement that any new schemes and indeed homecare providers are integrated into this programme before these are deployed.

"Registration (at the point of care) and prescribing processes [should] use digital solutions that reduce the administrative burden upon clinicians.” (Pharmaceutical, Medical, Nursing professional, regulatory or representative body)

"Publish a firm timetable to move homecare medicines services away from a paper based prescribing system, addressing any outstanding regulatory barriers that currently stand in the way.” (Pharmaceutical, medical or nursing professional, regulatory or representative body)

Complaints processes

Recommendation 11: People who use medicines homecare services must have access to a consistent complaints approach, with NHS Scotland oversight, to ensure:

• appropriate accountability and governance
• consistency in how complaints are handled
• complaints are managed and responded to within agreed timeframes
• quality standards are maintained
• patient trust and transparency is maintained
• patients’ rights are upheld, and
• continuous quality improvement and learning.

As highlighted, the landscape of medicines homecare is overly complex, and no more so than from the patient perspective. There is no doubt of the good intentions of all stakeholders: the NHS is keen to enable high quality, financially efficient care; commissioning companies aim to provide their medicines to patients in an accessible manner; and homecare providers are driven by the delivery of effective care. All parties are clear on their desire to work together and to base improvement on patient feedback. However, as the Review progressed, it became increasingly clear that despite these good intentions, the ability for patients to provide feedback was severely hampered by the complexity of the landscape, the challenges of joint working and a lack of consistency, coordination, and standardisation.

NHS Scotland must take ultimate responsibility for patient care, and therefore be accountable for delivery of a robust and consistent process for complaints, feedback, and improvement.

When using NHS Scotland complaints processes [30], patients can expect:

• it to be dealt with efficiently and be thoroughly investigated,
• a full explanation into how it has been investigated,
• to be told what action has been or will be taken as a result,
• an apology if a mistake has occurred,
• the NHS to use your feedback to improve services.

These principles seem perfectly applicable to medicines homecare services and should form the basis for design and implementation of a robust and consistent complaints process, in partnership with commissioning organisations and homecare providers.

A key component of this will be the involvement of all stakeholders in the care of the individual raising the complaint – the patient’s board, the commissioning organisation, and the homecare provider must all have sight of and input into addressing the complaint and any associated improvements. National bodies and regulators should also be sighted, where appropriate.

This does not require a single process to be managed by NHS Scotland – rather it necessitates a set of common standards and principles in line with the established NHS process, akin to how independent contractors operate within Scotland.

Failures to improve are undoubtably linked to ineffective partnership working. Given that all organisations involved will have established complaints procedures, with similar goals to the above, alongside staff who are experienced in the delivery of these processes, there is no reason this should be a lengthy or overly challenging development to implement.

"Both nurses and pharmacists tell us that the process for raising complaints is too long and complex, and that they cannot afford to spend more time filling out forms especially after having spent hours supporting patients with homecare deliveries. There should also be streamlined complaints reporting and resolution processes in place, ideally digitally, that resolve patient/clinician concerns, whilst reducing the extensive administrative burden on clinical teams.” (Patient group).

"Ensure there are sufficient complaints reporting and resolution processes in place, ideally digitally (e.g. Electronic Prescribing and Medicines Administration (EPMA), that resolve customer/clinician concerns whilst reducing the extensive administrative burden on clinical teams.” (Pharmaceutical, Medical, Nursing professional, regulatory or representative body)

"Patients are reporting adverse events to providers and this information may not then be passed on to the clinics, despite this being part of the [Service Level Agreement] SLA … Any delays to patient deliveries or prescription documents mean that the clinical teams have to take time to investigate and resolve, which takes up valuable clinical resource.” (NHS board)