DELIVERING SYSTEM ANTI-CANCER TREATMENT (SACT) IN WESTERN ISLES

NOSCAN Offices Rosehill Annexe ARI Site Cornhill Road Aberdeen AB25 2ZG Tel 01224 559420 DELIVERING SYSTEM ANTI-CANCER TREATMENT (SACT) IN WESTERN ISLES Introduction 2 Method 2 Background 3 Service Provision 3 Drivers for change 4 Assessments of the current chemotherapy service 5 The strengths of the current local service: 5 The weaknesses of the current service are: 6 The proposed Road Map 8 General principles 8 Recommendations and issues to consider 8 Threats to the development of a locally delivered chemotherapy 10 Conclusion 10 References 11

Introduction Following the publication of the [REVISED] GUIDANCE FOR THE SAFE DELIVERY OF SYSTEMIC ANTI-CANCER THERAPY (SACT) CEL 30 (2012), NOSCAN has supported constituent Health Boards undertaking their first self assessment of Systemic Anti-Cancer Therapy (SACT) services against the standards set out within the CEL. A member of the NOSCAN executive team visited NHS Western Isles (NHS WI) to support its nominated lead cancer professionals in undertaking a baseline audit on the 5 th and 6 th September. During that visit, it was apparent that the SACT service was confronting a number of challenges simultaneously, including the implementation of the CEL. It was therefore agreed that it would be advantageous to review the service as a whole in the context of the drivers for change and to consider the future provision of services to ensure a robust and secure service, able to address the challenges likely to be experienced in the future. NOSCAN offered to support this review. Dr James Ward, Medical Director Executive Lead for Cancer, NHS WI accepted this recommendation and commissioned this piece of work. Method The methodology was to undertake a number of interviews with staff involved in SACT and cancer service provision, followed by a feedback and discussion at a joint session of the cancer team. Key members of staff were identified by Ms Gill Chadwick, Macmillan Lead Cancer Nurse. A scoping visit was undertaken on 4 th and 5 th November. This was led by Mr Mark Parsons (NOSCAN Regional Lead Cancer Pharmacist) with the support of Mrs Fiona Campbell (Macmillan Clinical Nurse Specialist, Oncology/Chemotherapy, NHS Highland). Mr Parsons and Mrs Campbell met with staff for individual or team discussions in a confidential manner using Chatham House rules. Thus, it was agreed that, when appropriate, the content of discussions would be shared but that the identity of speakers would remain in confidence. The SACT service in NHS WI was represented by the following members of staff: Name Role SACT Nurse Dr Jim Ward Medical Director, NHS WI Ms Gill Chadwick Macmillan Lead Cancer Nurse Mr Jimmy Myles Lead Nurse, Western Isles Hospital Mrs Dawn Tiernan Chief Pharmacist, NHS WI Miss Chris Ann MacLean Macmillan Stoma & Colorectal CNS Mr George MacLeod Staff Nurse, Surgical Ward Mrs Fiona Campbell Staff Nurse, Surgical Ward Mrs Donna Parkes Macmillan Nurse Ms Mairi Smith Macmillan Nurse Mrs Linda Macmillan Senior Pharmacy Technician The purpose of the process was to: Discuss and explore the current provision of SACT services for residents on the Western Isles. Engage with key staff (nursing, pharmacy, medical) to discuss potential options and opportunities for the future provision and management of the Systemic Anti-Cancer Therapy (SACT) treatment. Help to articulate a short, medium and long-term service delivery model for SACT delivery on NHS Western Isles 2

Support the local development of a road-map to implement any of the agreed changes in service specification. This paper collates these discussions, and offers suggestions for a way forward that were shared in the final session. Background Service Provision The model of cancer care delivered to patients in NHS WI is a hub and spoke approach between Raigmore Cancer Centre (NHS Highland) and NHS Western Isles. A service level agreement exists to support this but was not available at the time of the review. The majority of SACT treatments are prescribed by Oncology and Haematology Consultants based in Raigmore Hospital. Day-case SACT services in NHS Western Isles are primarily provided from the chemotherapy unit attached to Specials Ward in the Western Isles Hospital, Stornoway. Patients requiring longer or more intensive treatment regimens are treated in Raigmore Hospital. Cancer patients requiring planned, supportive treatments, for example blood transfusions and bisphosphonates receive these in the Day Hospital, Western Isles Hospital. Patients in the Uists can receive day-case SACT therapy in Uist and Barra Hospital, Benbecula. Currently, most patients from NHS WI receiving treatment for gynaecological cancers are managed and treated at the Beatson Cancer Centre in the West of Scotland Cancer Area Network (WOSCAN). All cancer treatments for patients from Barra are provided by the Beatson Cancer Centre. This is due to the more straightforward transport links between the Island of Barra and Glasgow. Communication between the cancer teams in the Beatson and the WI about patients undergoing SACT is less than ideal, adversely affecting the ability of the islandbased team to support patients. A Consultant Oncologist based in Raigmore Hospital Cancer Centre visits the island once a month to review and manage his own patients and those of some of his colleagues at their request. Some patients are wholly managed by the clinicians from Raigmore, with direct communication between that patient s clinician and the NHS WI nursing and pharmacy staff for prescribing, checking and patient management purposes. This is a different model to that adopted by NHS Orkney, and NHS Shetland (comparable island Health Boards), who have no visiting consultant and it is unclear whether this model will be sustainable in the short or long term. The role of the visiting Consultant Oncologist is to: Assess new patients referred for Clinical Oncology opinion. Provide advice and information to patients about their disease and possible treatment options to enable them to make informed decisions and to obtain consent if appropriate to situation. Undertake review of some patients undergoing SACT treatments. Undertake review of patients with symptoms of their disease as requested. Follow-up of patients. The delivery of SACT to patients within the NHS WI has evolved over a number of years during which considerable experience has been gained. The service was initially based on 3

the Surgical Ward, staffed by nurses from the surgical ward, including a ward manager. The nurse-led SACT service was initially led by a Macmillan Chemotherapy Nurse. They have since left and the ward manager has retired. The service is provided and operationally managed within the Acute Hospital Service. The current surgical ward manager has no experience in SACT services but has operational responsibility for allocating nursing resource to it. The nursing resource allocated to the SACT service from the Surgical Ward is set at one whole time equivalent (WTE) Band 6 shared between two members of staff trained to administer Chemotherapy who are also part of the overall staffing complement of the surgical ward. The strategic and professional leadership of the SACT service is provided by the Macmillan Lead Cancer Nurse, Gill Chadwick, who is SACT trained. She has no operational or managerial accountability for the service. The Macmillan Lead Cancer Nurse is a member of the Macmillan Nursing Team The Macmillan Lead Cancer Nurse and another member of the Macmillan Team, also SACT trained, provide a significant degree of support to the SACT substantive post-holders covering, holiday periods, sickness, and training. Their input is necessary as no other members of the surgical ward nursing team are SACT trained, therefore, they do not have the required skills, training, experience or competencies necessary to provide the appropriate level of cover. The pre-treatment monitoring and support of patients undergoing SACT is provided by the SACT trained nurses who carry out a telephone assessment of patients on the day prior to planned treatment. Members of the Macmillan Team, not all of whom are chemotherapy trained, also monitor and support their own patients between cycles. The provision of this support is not defined and depends more on patient/staff communication relationships. Drivers for change There are currently a number of internal and external drivers that will impact on how the SACT service for NHS WI patients is managed and delivered. There is general recognition that patients and their families prefer treatment to be administered locally when this can be done safely. Patient demand for this service will see numbers increase. The recently published CEL 30 (2012) articulates the standards for safe delivery of SACT. When fully implemented these standards will assure the quality and safety of services provided at all sites. CEL compliance is a powerful driver in facilitating a more systematic approach in selecting patients for local treatments. The existing model of cancer care, led by a visiting oncologist may be compromised due to the imminent retiral of the key post holder (March 2014). This, combined with the recognised national shortage of oncology consultants is likely to result in medical staffing issues within the Department of Clinical Oncology, Raigmore Hospital. In the longer term, an ever expanding service sector will continue to challenge the sustainability of the existing service. On Island SACT services provided without a visiting oncologist are well established in NHS Orkney and NHS Shetland. It is of clear benefit to both NHS WI and its patients to carefully nurture the specialism, skills and experience available and consider changes in skill mix and service provision that would enhance local quality SACT services. 4

The adoption of a Chemotherapy Electronic Prescribing and Administration System (CEPAS) increases the ability for remote patient management by prescribing clinicians. It enables non-paper monitoring, real-time access to patient s treatment data and provides a patient-specific communication mechanism. All SACT treatment must be prescribed through this system to comply with the CEL standards. The repatriation of the travel budget to NHS Western Isles, for patients who continue to receive SACT treatment at Raigmore or Beatson Cancer Centres, offers a financial incentive to develop local services to minimise patient travel. Whilst it is recognised this will potentially offer significant savings for the local board, reallocation of some of the travel monies would be required to increase and improve the service, where travel to Raigmore Hospital and the Beatson Cancer Centre in Glasgow can be avoided. There is a different and more complex piece of work that will be required to be undertaken around the existing/historical service level agreements. A current national initiative looking into Transforming Care After Treatment TCAT (NHS Scotland & Macmillan Cancer Support 2013) jointly funded by Macmillan Cancer Support and the Scottish Government seeks to improve the quality of follow up and aftercare. This initiative could significantly improve the local delivery of care to patients surviving cancer. There have been recent improvements in the stability of pre-constituted chemotherapy agents, a number of which are commercially sourced in dose bands. This has enabled SACT agents to be given longer expiry dates, offering opportunities to safely transport SACT agents over extended timeframes. This increased flexibility in supply enables more chemotherapy to be sent to remote facilities. Dose Banding of SACT is an accepted and standardised practice across NHS Scotland. If SACT medicines are supplied and dispensed from the WI pharmacy, it is important for CEL compliance that a level of specialist expertise in cancer is further developed and provided by pharmacists on the Island. This would be possible with appropriate resource, time and contingency arrangements. This needs to be formally assessed through a skill mix review mechanism to ensure the resource is applied in an efficient manner. The level of input of the Macmillan team into the management of patients receiving SACT is having an adverse impact on their caseloads. If the Macmillan team was to continue to manage patients receiving SACT they would need to undertake specific SACT training to comply with the CEL. Government policy with respect to the Scottish Medicines Consortium (SMC) and the use of high cost medicines is inevitably going to lead to additional treatment options for patients and increased lines of therapy. Assessment of the current chemotherapy service The strengths of the current local service are as follows: There is an excellent level of commitment to providing a high quality SACT service on the Island from all staff. 5

The existing model of service delivery offers continuity of care through the cancer journey that is holistic. Often, the same nurse is with the patient at diagnosis, through all treatments and when needed during the palliative stage. This aspect of the service is beneficial for a small island board and as far as possible needs to be preserved. There is a commitment to collaborate in the delivery and care of patients receiving SACT between the cancer teams in NHS WI and NHS H - including medical, pharmacy and nursing staff. Most patients are assessed by a member of the nursing team prior to treatment (regardless of whether the chemotherapy is given in Western Isles or in Raigmore). This contributes to ensuring that the service for patients is safe (i.e. patients only get chemotherapy if their blood count and other parameters have been assessed) and minimises unnecessary patient travel. This significantly adds to the culture of patient safety and patient-centred care. Good co-operation between the pharmacy and nursing services on the island ensures the timeous supply of SACT treatments to the chemotherapy unit for patients receiving treatment on the Islands. The availability of Gaelic language speakers within the Islands SACT service is beneficial for cancer patients, many of whom use Gaelic as a first language. The benefit of not having to travel to receive chemotherapy is widely recognised and valued by patients receiving SACT treatment on the islands. The weaknesses of the current service are: The delivery of chemotherapy treatments on Western Isles is primarily dependent on 2 members of staff (1WTE). This is a concern in terms of providing adequate cover during annual leave and unplanned absences as this is currently provided by 2 members of the Macmillan Team who are SACT trained. If the cover arrangements are not managed appropriately, this can be the source of tension between the substantive post holders and the individuals required to cover. The current arrangements for service provision would have limited capacity to undertake the significant increase in workload anticipated from changes in government policy and the additional opportunity to repatriate further WI patients requiring SACT. Communication between Beatson Cancer Centre and the local cancer team is described as being very limited and unreliable; resulting in the local team being excluded and unable to adequately support patients at home. Initiatives placing additional demands on the SACT service providers, can have a negative impact on team working and cause friction. This is because it can falls between two possible services which have full commitments either to the Specials Ward or members of the Macmillan Team. Within this environment, opportunities exploring developing services can be viewed negatively rather than as an opportunity for service quality improvement. The direct operational management of the SACT treatment room by individuals without direct experience of SACT services may unintentionally, negatively impact on the quality of that service, which is highly specialist in nature with specific 6

governance standards that must be achieved to ensure the safe delivery of a locallybased SACT service. The leadership/management of SACT services on the island is compromised due to the split operation/professional management into separate service divisions. Providing a more united professional/operational leadership would improve the potential of the SACT service to meet and address the ever changing challenges to service provision. The criteria for patient selection for locally delivered SACT appears to be based on historical agreements and the personal choices of individual clinicians and/or Cancer Centres. There are clear inconsistencies in who is selected to have their treatment delivered in the Western Isles; these do not appear to be based on systematic descriptions of potential disease or treatment related clinical risks or patient safety concerns. Practically, this is resulting in similar SACT regimens being prescribed by one consultant to be given in the Western Isles but by another consultant, to be administered in one of the cancer centres. The recent chemotherapy IT system (CEPAS) is not being used to its full potential for managing patients on the Western Isles. Moreover it is currently not linked to the SCI store in the Western Isles. In Raigmore Hospital, there are 4 clinical oncologists who sub-specialise. Currently, the Clinical Oncologist visiting NHS WI reviews his own patients and those of his colleagues at their request. He also assesses new patients with breast cancer, referred to him by the breast MDT. In future, the availability of a single clinical oncologist willing to manage patients undergoing treatment for any cancer may be challenging and may not be the most appropriate way to manage patients receiving SACT. Currently electronic and paper based systems exist for the prescribing and administration of SACT treatment in NHS WI. The paper-based system has persisted due to problems encountered by the prescriber in accessing CEPAS from a desk-top computer in the Western Isles Hospital. This is a recognised as a significant risk in the service. The service currently has inbuilt inefficiencies due to hand written signatures being required for prescription dispensing and administration services using the CEPAS system. This is not necessary in a system that is password protected and can provide named indicators of allocator, checker and authorisation. It is recognised that this is a complex issue which needs to be addressed in partnership with the prescribing cancer centre. The pre-treatment assessment and follow up of patients on SACT appears to be shared between the Macmillan nurses (not all of whom are SACT trained), and the SACT nurses. Roles and role-definitions regarding these are unclear. It would appear that patients are sometimes reviewed between SACT cycles by their Macmillan Team. The Macmillan Team then report their findings back to the SACT nurses at a weekly meeting. The patients then appear to receive a further pre-treatment review the day before their treatment. The reviewers are of the opinion that a mid-cycle review is unnecessary and not standard practice elsewhere in Scotland. They also believe that the intervention mid-cycle by the Macmillan team can only act to confuse the patient as to who they should contact, and who will resolve any issues/toxicities related to their SACT. For a patient to receive the appropriate assessment and 7

follow-up of any toxicity, this needs to be done through direct contact with the SACT trained nurses. Non-SACT trained Macmillan Nurses are in some cases, assuming the responsibility for discussing patient toxicities and dose adjustments with clinicians in the cancer centres; bypassing the routine SACT trained chemotherapy givers and in essence relegating the role of those individuals to merely a technical operative. This brings with it further communication risks. The proposed Road Map General principles The proposed Road Map for sustaining and developing the current chemotherapy service in the Western Isles is predicated on the following principles: 1. All aspects of the delivery of SACT must be safe, and fully comply with CEL 30 (2012). 2. The principle for treatment being given safely as close to home as possible must apply, with the concept of safety taking precedence. 3. Policies and pathways must continue to be delivered as a shared care model, with treatment initiated, support and expert advice given from the cancer centres in Inverness and Glasgow. 4. Changes or increases in locally administered chemotherapy is best delivered at a evolutionary pace, that takes into account the need for workforce development and engagement of teams across the network. It must be sustainable; with a workforce that is appropriate to the skills required both assessing patients fitness/response to chemotherapy and for delivering chemotherapy treatments. 5. The service must be affordable in the context of a workforce that is appropriate to the levels of skills required to deliver the service. 6. Developments must be sensitive to the service configuration in NHS WI and must continue to support patients across a pathway from diagnosis to end of life. 7. Local SACT services must continue to be driven by positive patient experience in the context of what is achievable in a remote and rural setting. Recommendations and issues to consider Achieving a change in the design and provision of SACT services in NHS WI requires a number of areas to be addressed. These need to be distilled into an action plan, with ongoing communication and support to deliver this from NOSCAN, Raigmore Hospital Cancer Centre and to some extent, the Beatson Oncology Cancer Centre. Detailed work is required with the wider services in the cancer centres in Inverness and the Beatson Cancer Centre to identify and agree treatments which can be feasibly delivered in NHS WI. All aspects of the SACT service must be fully compliant with CEL 30 (2012) and not based on historical patterns of working from individual clinicians or Cancer Centres. 8

These services must be determined in line with the afore-mentioned governing principles. Bearing in mind the impending difficulties with oncology staffing, NHS WI would be advised to carefully consider how the follow-up of patients after cancer treatments could be achieved. The reviewers believe that if the Macmillan Nurses were relieved of some of the current roles they undertake for patients receiving SACT, there would be the potential for some of this valuable resource to be reassigned to this important work-stream. This would also match the current government agenda set out in the Transforming Care After Treatment TCAT initiative There was agreement amongst contributors that the provision of SACT would be improved by developing a service with its own distinct identity, separate to that of the surgical ward and Macmillan Nursing service. It is envisaged that this would have its own separate line of professional and operational leadership. This would improve the clarity in management and leadership accountability, service provision, and dispense with conflicting priorities amongst team members. It would improve role clarity and the job satisfaction for the team administering the SACT. The close communication links with the Macmillan Nursing team must be maintained to ensure the patients continue to benefit from the continuity of care provided by the cancer team. To ensure continuity of care, it is recommended that the Macmillan Team routinely refer patients highlighting treatment related issues to the SACT trained nurses for ongoing management and escalation as required. Sustaining a regular on Island SACT service would be best accomplished by highly skilled specialist nurses working to Advanced Nurse Practitioner Level (ANP) with skills to examine patients and prescribe and administer supportive therapies for patients. The grading issues required to attract, develop and maintain this level of competency would have to be carefully considered. As a minimum, the reviewers believe the on Island SACT service requires the equivalent of 2 WTE; this includes the additional resource already identified for contingency arrangements. We recommend that such arrangements are considered, evaluated, formalised and agreed. The provision of a pre- initial treatment review by the SACT nurses could improve the introduction of patients to the SACT service, ensure the patients are well informed, have consented to treatment and have all the important communication pathways in place and understood. It may also relieve some of the stress for patient when attending for their first treatment. On completion of treatment, a defined hand-over of the patient into their ongoing care team with an update of their status should occur. An open mind may be required to alternative models of delivery of care that would allow patients to have their bloods taken more locally, for example in GP Practices and for the extension of telephone pre-treatment assessment for patients living at a distance from the SACT units. The stability and delivery arrangements of some SACT agents may require increased flexibility with regard to treatment days. 9

The involvement of a pharmacist in addition to the pharmacy technician must be implemented if chemotherapy supplies from the Island pharmacy service to the SACT service is to comply with the CEL. For CEL compliance, further training is required within pharmacy, when these requirements are more clearly defined across Scotland. Additional resources are needed to release staff to undertake this work. A skill mix review may provide an efficient way of addressing the needs to release pharmacist staffing for the island service. Robust communication links with the prescribing cancer centres must be maintained. Contingency arrangements involving the Cancer Centres may need to be negotiated and established to maintain an efficient use of resource, for example, during the absence of the specialist SACT pharmacist. A clear understanding of the opportunity costs and savings that can be made by further expanding SACT and Cancer Services on the Island may provide a useful funding stream to enable the necessary service developments to be achieved. Opportunities for the ANPs and pharmacists to travel to the cancer centres for training and updates must be provided to enable them to maintain the essential competencies, learn new skills and develop close working relationships with the wider SACT team in the North. For a health board the size of the Western Isles, the reviewers would suggest that patients requiring SACT agents for non-cancer treatments and other disease modifying parenteral products should be centralised to the SACT team where the appropriate skill set is available. Threats to the development of a locally delivered chemotherapy The main threats to sustaining and developing the current service are: Inappropriate skill mix; the current model is not sustainable in a service that looks to maintain or further develop its capacity to deliver treatments locally. Resistance to a more patient centred treatment pathway from the Beatson Cancer Centre due to perceived safety concerns. Resistance to change from individual clinicians in both Raigmore and the Beatson Cancer Centres Lack of understanding from senior management on the island of the specialist nature and specific governance standards required in the process of delivering a locallybased chemotherapy service. Lack of finance and staffing to undertake the work outlined above. Conclusion A local service re-design is necessary to meet the short, medium and long term challenges in providing SACT services to patients on the islands. The key building blocks for a quality SACT service are available within NHS WI but need to be reconfigured to improve the transparency, consistency and ownership of the service. 10

All staff caring for cancer patients on the island are committed to providing a safe, effective, quality service locally. The provision of the existing SACT service confirms this. With careful planning, the SACT service could be expanded to benefit increased numbers of patients. The recent publication of the chemotherapy CEL 30 (2012) is a powerful driver to support the strengthening of the existing service and its ongoing expansion. In order to progress these developments, it is recommended that NHS WI develop an action plan with support from the regional cancer network (NOSCAN) and its partner Cancer Centres in Inverness and Glasgow. It is recommended that the action plan examines the short to medium-term delivery options for chemotherapy delivery within NHS WI and after considering the points raised in this document, undertake a redesign that encompasses the needs of patients, the workforce, service quality and the affordability dimensions of the service. It is our assessment that the service as it is currently configured, will struggle to provide for the needs of patients on the Western Isles as it confronts the new challenges ahead. Mark Parsons Macmillan Regional Pharmacist North of Scotland Cancer Advisory Group Fiona Campbell Macmillan CNS Oncology/Chemotherapy November 2013 References NHS Scotland & Macmillan Cancer Support (2013) Transforming Care after Cancer TCAT: National Launch Event 13 th June 2013 http://www.scotland.gov.uk/resource/0043/00437112.pdf The Scottish Government (2012) [Revised] Guidance for the safe delivery of Systemic Anti- Cancer Therapy (SACT) CEL 30 (2012) 11