SECTION EIGHT: IMPROVING QUALITY OF CANCER CARE FOR PATIENTS
Significant progress has been made in improving cancer services since the 2001 cancer plan. Managed Clinical Networks ( MCNs) have been established, with a remit to improve the quality of care of patients, as outlined in HDL (2001)71 Cancer in Scotland: Action for Change: Regional Cancer Advisory Groups ( RCAGs).NHSQIS has a role in ensuring the consistency and quality of treatment provided by MCNs through the accreditation process, and this responsibility was further enhanced in HDL (2007) 21 Strengthening the Role of Managed Clinical Networks. Networks play an important role in self scrutiny to improve services locally, regionally and nationally. MCNs should take the lead in ensuring the implementation and ongoing monitoring of advice and guidance from NHSQIS (including national standards and SIGN guidelines). This will provide local services with accurate local data which can be used in a timely manner to improve the effectiveness and efficiency of their services and individual performance.
MCNs are required to assess how services within their geographical areas perform against these standards. In addition, RCAGs have coordinated this activity and published reports detailing the progress of their cancer services. The areas of work included:
- Improving patient and public involvement in shaping the work of the networks
- Audits of multidisciplinary working and multidisciplinary team meetings
- Education events
- Clinical audit and monitoring
- Service improvement and redesign.
The consultation responses indicated a strong degree of consensus that there is a need to do more to improve the engagement between those who provide services and those who use them. Many respondents also made the point that there should be an extension of quality standards to non-clinical aspects which may include physical, psychological, social and spiritual care. An editorial in the Scottish Medical Journal highlighted the importance of ensuring that clinical audit is supported as it underpins the activity of each tumour network and is the key to clinical improvement. Therefore a quality programme must be developed, based on the NHSQIS core and tumour specific cancer standards, to drive improvements both in clinical and non-clinical aspects of care. Through the implementation of these cancer standards across all tumour sites, continual quality improvement will be achieved.
As part of the NHSQIS accreditation process, Regional Cancer Networks have developed quality assurance frameworks that cover a wide range of issues, such as:
- Reporting and accountability
- Involvement of the public
- Clinical audit and governance arrangements
- Educational programmes.
These regional frameworks provide the basis for the development of a comprehensive national quality programme, so that services are provided to agreed standards, whilst allowing flexibility for Networks to address specific local and regional issues.
A Broad Approach to Quality
Better Health, Better Care sets out the basis for NHSScotland's approach to quality improvement. This is based on the Institute of Medicine's definition for quality and has six specific goals:
- Patient-centred - considers the patient's preferences and requests in every health care decision regarding diagnosis, treatment and care
- Safe - helps cure the patient instead of causing more injury or discomfort
- Effective - provides the right services to the right people, only when they really need them
- Efficient - targets the application of resources (staff, supplies, equipment) to maximise resource use and avoid passing on costs to the patient
- Equitable - ensures that every patient receives the same standard of care regardless of gender, ethnicity, geographical location and socioeconomic status
- Timely - provides treatment quickly, reducing waits and (sometimes harmful) delays.
The future work programme for quality improvement in cancer services needs to reflect all six dimensions of this model, which are both interlinked and essential, thereby providing a clear focus on quality at national, regional and local level.
Putting Patients at the Centre
NHSScotland's commitment to becoming a more mutual organisation puts the participation of patients and their carers at the heart of its continual drive to improve the quality of healthcare services. The importance of putting the experiences of patients at the centre of decisions on the planning and delivery of cancer services was reinforced in the Scottish Government-funded research published by the University of Stirling in 2008. This research confirmed the importance of the agenda described in the previous chapter in the way that it challenges NHSScotland to:
- Develop services that treat the person and the disease
- Deliver services in a way that ensures a cooperation between the expertise of professional, patients and the public
- Strengthen joint working between tertiary, secondary and primary care and expand partnerships to include social care, employment and welfare agencies.
"To improve the patient's experience we must learn from their experiences. Satisfaction surveys could be used to gauge how well the service is doing, and highlight the areas for improvement."
Better Cancer Care Consultation Respondent
"Reassurance is required about the patient's wishes being fulfilled … professionals should be aware of the importance of [cultural] issues. Doctors should be educated [in the various cultural expectations/issues] so they can have more open conversations with patients."
Better Cancer Care Fair for All Disability Roadshow Participant
Better Together, the Scottish Patient Experience Programme launched in February 2008, aims to gather information on the experiences of patients and uses the insights and understanding these provide to make and prioritise improvements in the way in which care is designed and delivered. As part of Better Together, NHS Boards will:
- Actively seek the views of patients and what they wish from cancer services
- Conduct regular surveys to qualitatively and quantitatively assess the ways in which they are responding to user views
- Provide evidence that the information already collected (for example, from Patient Focus Public Involvement work and complaints procedures) is being used to direct learning opportunities and embed improvements into local cancer services provision
- Ensure that they involve those who may not normally engage in consultation exercises, including, for example, older or younger people, black and ethnic minority groups and lesbian, gay, bisexual and transsexual ( LGBT) groups
- Demonstrate partnerships between patients and healthcare professionals in policy making, quality assurance and the evaluation of services.
The Better Together programme will involve the development of pilot improvement materials around cancer, which will allow patients to share their experience online. This will be fully monitored and regularly fed back to NHS Boards. Further information on the objectives, benefits and specific activities over the next three years is available on www.infoscotland.com/bettertogetherscotland/CCC_FirstPage.jsp. The key areas where experiences of people affected by cancer will be expected to have an impact are:
- At presentation of suspicious signs and symptoms and handling of concerns around the time of referral, further investigation and diagnosis
- During decision making about treatment options
- At the stage of active management of the disease
- At the transition point when an intense treatment phase is completed
- Getting 'back to normal', including rehabilitation and adjusting to life after treatment
- During surveillance and monitoring for recurrence
- In the detection and management of treatment related side-effects including 'late effects'
- When symptom palliation is required or when end of life issues become paramount.
Example of Good Practice in Scotland
Patient Improvement Work
South East of Scotland Cancer Area Network ( SCAN) has been capturing patient stories to inform their service improvement work around streamlining the patient pathway and reducing waiting times. Using a modernisation technique called 'Discovery Interviews', interviews have been conducted with lung cancer patients and their carers across Lothian and Dumfries & Galloway. Patient feedback is 'anonymised' and then shared with the clinical teams, so that key priorities can be included in service improvement action plans.
"Priority should be given to involving patients in the development of all information, which should be provided in a variety of formats and languages in order to be accessible to all sections of society."
"There is a great concern that [this patient] involvement is currently limited to the 'usual suspects'. We need to look at new ways of involving and listening to younger people affected by cancer, using a range of communication methods such as, phone, SMS and the Internet, rather than relying on local meetings alone."
Better Cancer Care Consultation Respondents
If patients have a bad experience of care, it is important that they can access good quality advice and support. The Independent Advice Support and Advice Service was launched within Citizens Advice Scotland in September 2007 to:
- Help people understand the NHS and what their rights/responsibilities are
- Assist people (particularly the more disadvantaged) to engage with the NHS
- Ensure help and support is available to patients, carers and members of the public to raise concerns with the NHS care provider and resolve issues informally
- Guide patients through the formal NHS complaints procedure and provide information and support they need to access and make better use of NHS services
- Encourage better communication and learning from patient experience and feedback in developing patient-focused services.
Patient safety is a major, strategic development priority for NHSScotland. An explicit and tested approach to improving patient safety has the potential to greatly improve the quality of care and the patient experience, providing patients with the confidence that when they access any part of the healthcare system they will receive the best treatment reliably and without fear of harm. By adopting a nationally-led, strategic approach, significant levels of sustainable improvement are envisaged. This will be achieved through a major change programme based on integrated arrangements at national, regional and local levels.
The complexity of cancer care provision (including the provision of palliative and end of life care services) demonstrates the importance of ensuring safe and effective practice is the norm, with an increasing focus on the reliability of the processes underpinning that care. The Scottish Cancer Taskforce will work with the Scottish Patient Safety Alliance to identify key issues for cancer services at a local, regional and national level. It will report progress on these issues in its annual report.
Each level (local, regional and national) in NHSScotland should understand their role and responsibilities and should also strive to make the best use of its resources, minimising duplication where possible. National Cancer Audits and comparative reporting have already proved successful at identifying real improvements in patient care. There are a number of lessons which can inform how best to achieve quality improvement from audit:
Learning Points from ISD National Audits of Other Diseases
- The audit must have clear and explicit aims and objectives stating what aspect(s) of patient care the audit aims to improve and how these will be assessed
- It is good practice to have a clinical governance framework in place for the audit to demonstrate it has a process for 'closing the audit loop'
- It is good practice to identify, measure and report on any quality standards
- The audit must be applicable nationally (if not national to start with) - there should be a national database of the core data required by the audit
- Any comparative results should be presented openly
- Minimise additional work by clinical and other staff involved in data collection
- Outline how feedback will be provided to clinical teams and managers, how improvements in care will be supported (for example, the frequency of reporting required to support quality improvement)
- Identify how the audit will be mainstreamed into clinical care, if applicable
There is a need to benchmark audit outcomes across regions and providers in order to improve care to the very highest standards. 'National Indicators' based on standards will be common to the three regional cancer networks. In addition to comparing data within each network, data should be compared between the three cancer networks, in order to produce a national picture. Moreover, where a UK audit exists, for example, LUCADA (Lung Cancer Audit Data Analysis), the networks will endeavour to collect data which will enable accurate comparisons to be made. There is also a need to ensure that many different types of tumours are included in the national, regional and local audit programme.
The 'cancer journey' for many people starts when they notice symptoms, so audit should therefore examine the total patient pathway from when the patient presents with symptoms to post-treatment. Lessons must be learned from the primary care audits to encourage people to see their GPs earlier, to enable faster referral into diagnostic and treatment services. In addition, primary care and screening audits need to be part of the quality process as they impact at different stages in the whole cancer pathway. The data gathered from these audits should be used by primary care to improve quality, processes and patient outcomes.
The Scottish Cancer Taskforce will be asked to develop a national quality work programme which will include a review of audit resources and tasks across Scotland, actions to streamline the process to reduce duplication of information and defining a rolling programme of audit, together with a governance framework, to ensure the audit outcomes are acted upon.
Reducing waste and duplication in cancer services is a priority and an important dimension of quality improvement. With the support of the Scottish Government's Improvement and Support Team, there are a number of areas where the efficiency of the process of care will be examined and services redesigned where necessary. A significant amount of work has already been done by local teams in mapping out patient pathways in support of the 62-day waiting times target. This includes optimising e-referral, streamlining or eliminating referral triage, on-line referral triage, establishing models of straight to test, ensuring clear outcomes from multi-disciplinary meetings and improving scheduling and sequencing of key diagnostic tests and appointments. Extending the benefits of the 62-day pathway to screened positive patients will extend this redesign of services to screening services ensuring that screening teams are supported to identify and tackle their service delays and bottlenecks. All NHS Boards will continue to be encouraged and supported to better understand demand and capacity for cancer services and to ensure that planning for cancer services takes place within the context of other major system changes such as the 18 Weeks Referral to Treatment Standard which will take hold from 2011.
Work will also be done in the planning of radiotherapy workload. All of these initiatives will be supported by NES to ensure there is a robust training plan, relevant to the needs of staff working within cancer services. These pieces of work will be highlighted in the Scottish Cancer Taskforce annual report, where progress will be outlined.
"Patients want to know that the treatment they receive locally is as good as any in the country."
Better Cancer Care Consultation Respondent
Multi-disciplinary teams that work within regional MCNs were introduced in the early 2000s to minimise geographic inequalities in the quality of care and to ensure the highest standards of care were provided throughout Scotland.
NHSQIS, together with the cancer networks, have already progressed and developed a range of standards for some cancers. Publications in 2008 have included standards for lung, colorectal, breast and ovarian cancer. The Scottish Cancer Taskforce will consider other areas where there is evidence of variation in care/outcomes and work with NHSQIS to prioritise the development of standards.
There is a growing expectation from patients that all care can be delivered closer to home and the Scottish Government believes that decisions about the configuration of services should be made on the basis of a presumption against centralisation. Providing seamless care involving shifting the balance of care closer to the patient's home will require Community Health Partnerships (and Community Health Care Partnerships) to have a greater role in the planning and delivery of service for people with cancer in their areas. There are however, circumstances in which it makes sense to concentrate certain services for the benefit of patients, as patient safety must be paramount at all times. Whilst some treatments can be delivered in local hospitals, other treatments require such highly-specialised support and facilities, that they can only be safely provided in the five main cancer centres.
There is a continuing call from patients and their families to reduce waiting times - time from referral to being seen by a consultant or other healthcare professional, time for investigations and time from diagnosis to treatment. It is important to acknowledge that the links between specific waiting times targets and better outcomes in terms of long-term survival are generally unclear. However, there is no doubt that waiting times are closely linked with increased anxiety and concern for patients and their families and that waiting is an important component of quality.
Scotland currently has four cancer waiting times targets set out in Our National Health, A Plan for Action, A Plan for Change (2000). The 31-day targets for both children's cancers and acute leukaemia have been achieved and sustained (at the time of publication). The 31-day target for breast cancer has not yet been achieved but NHS Boards are focused on improving this part of the pathway. The 62-day target for urgent referral to treatment for all cancers has shown significant improvement in 2007/08 (Figure 16); the last quarterly validated figure (January to March 2008) shows 94.1% performance against the 95% target.
Figure 16: NHSScotland: all cancers - performance against 62-day urgent referral to treatment target
Data Source: Scottish Government
Improved performance over this period has been due to a number of different strategies implemented across NHSScotland. Weekly performance reporting has provided NHS Boards with the information they need to manage performance and identify problems and bottlenecks in patient pathways. Timed pathways have been put in place for each individual tumour site to ensure that patients are proactively managed through the 62-day pathway. Local escalation procedures have been implemented to ensure that delays can be avoided as far as possible. In addition, inter-hospital transfer protocols (where patients are referred between hospitals and NHS Boards for assessment, investigations and treatment) have been agreed. Nationally, the Cancer Performance Support Team was established in November 2006 to provide support, along with a performance management function, to NHS Boards and has worked closely with a number of NHS Boards to identify and resolve problem areas locally. The renewed focus and direction has assisted in the significant improvement against the target; the key for the future is for NHSScotland to sustain this.
"Waiting times [need to be] more inclusive and meaningful for patients and healthcare professionals."
Nicola Sturgeon, Cabinet Secretary for Health & Wellbeing, at the launch of Better Cancer Care, A Discussion
Taking account of the responses from patients and the voluntary sector to the Better Cancer Care, A Discussion document and consultation with a range of individuals within the services, the scope of the current waiting time targets will be extended.
First, the urgent flow of patients covered by the 62-day target will be extended to include screened positive patients, which will ensure equity for patients who display symptoms suspicious of cancer and will encourage the redesign of screening services along the whole patient pathway.
Second, building on the improvements achieved in patient pathway management for the urgent flow of patients, urgent and routine flows of patients will come together from the point of decision to treat to benefit from a new, comprehensive 31-day target. This means that access from decision to treat to first definitive treatment will be the same for all cancer patients, whatever their flow into the system. The definition of the 'decision to treat' date will require further work to agree the starting point for this target which is most meaningful to patients. In many cases, this is likely to be the date on which a multidisciplinary team consensus on treatment plan options is discussed and agreed with the patient. This new target which is already a milestone for the urgent flow of patients on their 62-day pathway (Figure 17), will cover all patients referred either as urgent, routine or from a cancer screening programme. This will ensure greater equity between all patients diagnosed with cancer, irrespective of their flow into the system.
Figure 17: New waiting times targets
The proposed changes to the targets will be taken forward alongside the work on the new 18 weeks referral to treatment standard (which will further accelerate diagnosis for all routine patients in Scotland whether or not they are found to have cancer) to ensure that resources are used appropriately and integrated across all access targets.
The overall aim is to support continual improvement in cancer control and quality of cancer care; timeliness and access are integral to a quality service, focusing on what is meaningful for patients.
- Develop a work programme which will define how we will take forward the six quality indicators for cancer services
- Work with the Scottish Patient Safety Alliance to identify key patient safety issues for cancer services at a local, regional and national level
- Work with the Better Together team to progress the objectives, benefits and specific activities over the next three years, to improve the experiences of people affected by cancer
- Review audit resource across Scotland and reduce unnecessary duplication
- Convene a short-life working group about how we will develop a work programme for quality improvement
- Ensure by 2010, all tumour networks take part in national audit and agree a governance framework with RCAGs and their constituent NHS Boards about how the results of these audits are acted upon locally
- Extend the 62-day urgent referral to treatment target to include screened positive patients and all patients referred urgently with a suspicion of cancer (to be delivered by 2011)
- Introduce a new 31-day target for all patients diagnosed with cancer (whatever their route of referral) from decision to treat to treatment (to be delivered by 2011).