Cancer Plan for Children and Young People in Scotland 2012-15

How will we achieve success?

Capabilities and Culture

We need to develop a single, virtual service for children and young people with cancer in Scotland. The model outlined in Figure 1 illustrates the MSN structures and functions focused around the patient. The MSN Board will be supported by the Multi-Disciplinary Team (MDT) Group, in coordinating the delivery of treatment and care, the Operational Delivery Group, in ensuring the operational delivery of the work of the MSN, along with and the Governance and Quality Assurance Group, which will evaluate the service and ensure the delivery of high quality care.

One of the first priorities is the development of Multi-Disciplinary Teams (MDTs) for delivering care.

Figure 1: MSN structures and functions.

Leadership

The role of the MSN is to provide a focus for services and ensure that the plan is coherent across Scotland, delivering patient centred, safe and effective services. Services for children and young people with cancer will be delivered as a single service for Scotland but access to services will continue to be through local NHS Boards. The aims of the MSN will be delivered through a partnership between the MSN Board, NHS Boards and front line clinical staff.

The development of strong clinical leadership within the MSN will be key to its success. In addition to the appointment of a National Clinical Director, with overall responsibility for delivery of a pan-Scotland approach, the MSN has already appointed a Clinical Leader for Governance and Quality Assurance, and will strengthen arrangements to ensure a particular focus on the needs of teenagers and young adults, survivors and those who need palliative care. The Governance and Quality Assurance Group will ensure that the approach across Scotland is driven by evidence and best practice and that service delivery is based on standards and protocols. This group will ensure that all children and young people have the opportunity to be entered into an appropriate clinical trial. A National Network Manager has been appointed to ensure delivery of the aims of the MSN.

The MSN Board will set the overall direction for services reporting to The Scottish Government and the territorial NHS Boards. Operational delivery of MSN plans will be achieved through the Operational Delivery Group, which will have clinical and managerial representation from the cancer centres and shared care services.

Delivering a Single Service for Scotland

The role of the MSN is to facilitate an approach for Scotland that allows access for all children and young people with a diagnosis of cancer to the best possible care that Scotland can provide. Services will operate as a single, cohesive and sustainable service for Scotland with care provided in a variety of settings but led by the decisions made by the Multi-Disciplinary Team (MDT) to promote consistency and equity of care.

Hospital care is mainly provided by the four children's hospitals in Scotland, although the range of services provided in each centre is different and any individual patient's care may be shared between centres. Both Edinburgh and Glasgow are defined as Principal Treatment Centres (PTCs), and Glasgow hosts the National Bone Marrow Transplant Service. Aberdeen Children's Hospital does not provide as extensive a range of services as Glasgow and Edinburgh, but does manage many children locally for much of their pathway of care and shares care with other centres. Dundee operates in a shared care arrangement with Edinburgh, Inverness with Aberdeen, Edinburgh and Glasgow, and Dumfries with Edinburgh and Glasgow.

A diagnosis of cancer devastates any family and treatment can be intense and prolonged. Minimising disruption to normal family life and limiting time away from home, from other children, from family support and from work is important in helping families cope. Despite the intensity and complexity of current cancer treatment, elements of treatment can, and will, be delivered as locally as possible. District General Hospitals will vary in the level of care they provide, but all must be able to make a diagnosis of suspected cancer, refer timeously to a treatment centre and provide emergency care for any child or young person who becomes acutely unwell whilst at home in their locality.

Cancer services for Children and Young people will be delivered as a single and sustainable service across Scotland.

Multi-Disciplinary Team Working

Good practice and evidence from across the world highlights the importance of the role of the MDT in improving outcomes in the care of cancer patients. One of the first priorities of the MSN is the development of Scotland-wide MDT meetings with responsibility for confirming diagnosis and agreeing the key treatment decisions throughout the pathway of care for every patient.

National MDTs are the structure through which care will be delivered as locally as possible, whilst prioritising safety. They will have a registration role, will facilitate data collection and audit and will be of strong educational benefit.

MDT working brings together the wide range of healthcare professionals involved in the care of a child or young person with cancer and galvanises their different expertise to ensure that a holistic decision is made about the pathway of care for each individual. Such MDTs can have a variety of purposes, including confirming diagnosis, making treatment decisions and considering the psychosocial needs of the patient.

All children and young people with cancer will have their diagnosis confirmed and their treatment agreed at a series of regular national MDT meetings facilitated by video-conferencing or web-based systems. Clinicians, nurses and allied health professionals from all hospitals involved with the care of children and young people with cancer will contribute to these meetings, although the clinical responsibility for the patient will continue to reside with the responsible consultant. All patients will be discussed at diagnosis, at agreed stages of treatment, at the occurrence of significant toxicities and, if necessary, at relapse. This will mean that every child and young person will have the benefit of the best medical expertise and opinion at each stage of their treatment. Patients and families find reassurance in knowing that their children's treatment has been discussed by a number of experts. Referral pathways and place of treatment, including which elements of treatment should be delivered centrally and which can safely be delivered locally, will be agreed by the MDT. MDTs will facilitate successful networking across Scotland.

National multi-disciplinary team working is pivotal to delivering a single and sustainable service for Scotland.

eHealth

Delivery of a single service for Scotland with local access will be built on an eHealth platform. The use of modern technology and common systems to help deliver care, including telehealth, and supported common or interfacing systems.

The MSN is working on a number of eHealth projects including the development of mechanisms to support a national MDT way of working, exploring common systems for chemotherapy prescribing, and the development of electronic individualised care plans to facilitate the long-term follow-up of survivors of cancer in children and young people.

Clinical Trials

Treatment on a clinical trial is regarded as the gold standard of care and paediatric trial recruitment has led all other cancers in this area. One of the main aims of the MSN is that every child and young adult with cancer in Scotland is enrolled into and treated on a clinical trial, where a clinical trial for their particular cancer is available.

The current excellent survival rates for many paediatric cancers are due to serial improvements over time, which have been achieved through comparing different treatment strategies within large national and international trials which recruit sufficient numbers of patients to power the randomised questions. The 150 new cases of cancer in the 0-15 year age group and 150 new cases in the 15-24 year age group, presenting each year in Scotland, represent a spectrum of cancers with insufficient patients with any specific cancer to run independent trials. Children and young people treated within Scotland will therefore be entered into trials which may be exclusively United Kingdom based, but are more likely to be European or international trials. Whatever the recruitment population, it is likely that these trials will be part of the National Cancer Research Institute (NCRI) portfolio and be approved and overseen by the NCRI Children's Cancer and Leukaemia Study Group. Whilst membership of this group is by appointment, the MSN currently has representation on this group through its current Clinical Director.

The regulatory requirements of the European Directive on Clinical Trials has made the opening and running of clinical trials extremely onerous and as a result the number of open clinical trials available to children has fallen. The MSN will ensure equity of access to open clinical trials to children with cancer across Scotland irrespective of place of residency. Accrual to trials across the age range will be monitored and audited for comparison with UK wide data.

The Cancer Research UK (CRUK) Clinical Trials Unit based at the University of Birmingham is the main, but not exclusive, sponsor and clinical trials unit for paediatric cancer trials in the UK. Sponsors have regulatory responsibilities which can be particularly challenging for shared care centres. The MSN will work with the network of shared care centres in Scotland to facilitate the delivery of treatment within clinical trials as locally as possible, whilst meeting the sponsor's regulatory requirements.

Whilst the majority of children and young people with cancer are cured, a minority relapse and require novel therapies. Phase I and II trials, involving new therapeutic agents, are organised under the auspices of the Innovative Therapies in Children with Cancer (ITCC) Europe. There are nine ITCC accredited centres in the United Kingdom, one of which is Glasgow. All children and young people in Scotland will have access to new agents available within phase I and II trials, although not all of these trials will be open in Scotland. The MSN will ensure regular communication across the network to all centres, including research nurses, with details of phase I and II trials open to recruitment.

Every child and young adult with cancer in Scotland will be enrolled into and treated on a clinical trial where one is available.

Research and Development

All clinical trials must comply with the European Directive on Clinical Trials. In the UK, it is the responsibility of the sponsor to apply for Medicines and Healthcare products Regulatory Authority (MHRA) and Research Ethics Committee (REC) approval. Each clinical centre must then apply for and obtain ethical approval from its local Research and Development (R&D) department.

At present in Scotland, this involves three R&D offices in Aberdeen, Edinburgh and Glasgow. This is a cumbersome process with considerable variation in the length of time taken by centres to open a clinical trial. The MSN aims to streamline this process by working with an identified Regulatory Administrator and Clinical Trial Coordinator, at one of the R&D offices, to facilitate a pan-Scotland approach that will smooth and speed up the process.

Increasingly trials are extending their upper age limit to recruit young adults into combined trials for children and young adults, particularly where outcomes are superior for patients treated on paediatric protocols. Traditionally, teenagers and young adults are less likely to be treated on a clinical trial than children. The MSN will work with the R&D offices to open trials across the age range at all appropriate sites in a timely manner.

The MSN aims to facilitate the R&D approval for clinical trials for children and young people with cancer in Scotland such that centres open in unison and that all children and young people have access to clinical trials at the same time. The time from notification that central approval has been granted to the trial opening will be monitored and audited.

Education and Training

The first aim of the MSN is to guarantee sustainability of services for children and young people with cancer and this will only be achievable through a well educated and trained workforce. This is a priority for the Scottish Government in all areas of the NHS and across the whole workforce. The MSN will map the training requirement of the workforce discipline by discipline while being mindful of predicted changes in the workforce and pattern of treatment delivery.

Paediatric haematology and oncology is a fast moving field with continuing developments in diagnostic and prognostic indicators and in treatment. Scottish clinicians are at the forefront of some of these developments. Education across the range of disciplines will be delivered through attendance at MDTs, national Mortality and Morbidity meetings and specialist national and international meetings. Discipline specific meetings will identify additional national training and educational needs.

The role of nurses continues to develop as nursing staff assume many roles previously the domain of medical staff. The MSN will promote the continuing extension of the traditional nursing role and the progression to Clinical Nurse Specialist and Advanced Nurse Practitioner level.

Each of the Scottish centres has specific strengths. Doctors training in the specialties of paediatric oncology and haematology will benefit from experience in sub specialist training available at each of the centres. Both nursing and medical staff from shared care centres may spend time at treatment centres for additional experience or training in specialist areas.

Generic training in child protection and paediatric life support remain mandatory for all clinical staff. Training in Good Clinical Practice (GCP), a regulatory requirement for clinical trial participation, will be extended to shared care centres to facilitate local involvement in clinical trials.

The development of e-health as an educational tool will help provide a web based learning facility eliminating the need for travel. E-health will host educational material appropriate to all disciplines. MDT meetings are currently held by video-conference to minimise travel and all educational meetings will have a video-conferencing facility, wherever appropriate, to allow access to all.

Clinical Attitudes

Change always presents challenge and the MSN recognises that achievement of the stated ambitions will be challenging for many clinical colleagues and may require a change in the way that some clinicians have traditionally worked. The MSN is committed to open dialogue, productive challenge and collegiate decision-making. Centres will be expected to support each other, provide clinical advice and training opportunities as necessary. Once pathways of care are agreed, all clinicians will be expected to adhere to them. Similarly with individual treatment plans or protocols. Through this approach, consistency of patient management will be achieved.

The MSN will also need to be alert to issues of concern arising from this new way of working and will help to broker solutions where this is required, but things will only work if clinicians believe in the benefits of working together. There are some hurdles that will need to be overcome. As mentioned above the MSN will harness technology to support the provision of clinical care and decision making at a distance. It will also provide opportunities for clinicians to meet and train with colleagues from other centres so that any barriers that may exist are broken down.

Communication

The quality of communication that underpins clinical interactions is critical to providing a safe, effective and person-centred environment for patients, parents and carers. The MSN will work with all stakeholders to develop and embed better ways of communicating that ensures the right information is available at the right time to inform clinical decision making. The MSN will support the widespread adoption of the SBAR method of communicating critical information that is being rolled out as part of the Scottish Patient Safety Paediatric Programme and will harness telemedicine to support the work of MDTs.

The MSN will develop easily accessible information for patients and their families using both print and web-based media. To this end, the MSN intends to construct and maintain a children and young people with cancer website to act as a central resource for communicating reliable, targeted information for children and young people with cancer and their families.

The MSN Board will regularly engage with staff, families and partner agencies through a variety of means including site visits, a newsletter and, where appropriate, social media.

The MSN will arrange Scotland-wide educational meetings and will provide opportunities for staff to visit and work in other centres to promote better integration of services across the country. Through all of the above the MSN will deliver a better informed and better connected workforce. This in turn will make care safer and more consistent for patients and their families.

Processes and Structures

Operational Delivery

The MSN will work closely with NHS Boards to ensure the delivery of a single cohesive service for children and young people with cancer in Scotland. At times the service specific priorities of the MSN may conflict with existing priorities for NHS Boards, in relation to workforce requirements or utilisation of supporting systems for example. The MSN Operational Delivery Group, which has clinical and managerial representation from the children's cancer centres, is already in place to anticipate issues and to seek to resolve them in a collaborative way.

Governance and Quality Assurance

To ensure the provision of a quality service on an equitable basis throughout Scotland the MSN will develop standards against which the service can be measured. We will ensure that these relate to comparable international standards for care (see Appendix 1), including those developed for the other UK countries^{[3] [4]}.

Outcomes will reflect the Healthcare Quality Strategy^[5] in that they will ensure care is patient centred, effective, efficient, timely, and provided in the right place by staff who have the appropriate training and expertise. Through dialogue with clinical and managerial staff across Scotland, the MSN has developed a range of outcome measures which are detailed in Appendix 2.

Assessment of outcomes requires that there is good data recorded for Scotland's patients. One of the priorities of the MSN will be to establish a national database, to allow local entry of data for national analysis. The previous work to agree a minimum dataset will be further developed and refined to answer appropriate questions related to outcomes. This will also allow for international comparison.

The MSN will develop Quality Performance Indicators (QPIs) so that compliance with expected outcomes can be measured. In doing so it will learn from the work undertaken by the National Cancer Quality Steering Group which has developed QPIs for adult cancers and will also seek the support of Health Improvement Scotland in taking forward this work.

The Governance and Quality Assurance Group will coordinate an annual morbidity and mortality review of all patient deaths and clinically significant complications to reduce early toxicity and morbidity and improve outcomes in the longer term. There will also be an annual review of expected deaths to assess palliative care provision.

With the aim of the MSN to provide a nationally delivered service it is important to have consistency of care across all the units. CATSCAN previously developed supportive care guidelines, one for blood transfusion and one for management of febrile neutropenia. These guidelines will be reviewed, their implementation audited and where appropriate, other guidelines will be developed.

The MSN will develop outcome measures against which services can be evaluated.

Survivorship

Today, over 7,000 children and young adults under 24 years old, living in Scotland, have had a diagnosis of cancer and, of those, about 6,000 were diagnosed more than five years ago. With cancer survival rates approaching 80%, the number of cancer survivors is likely to grow by 4% per year^[6]. By 2030, it is projected that the population of young cancer survivors will be in the region of 11,000, constituting 1 in 100 of the young adult population^[7].

Completion of treatment for primary cancer does not signify the end of the journey for these young people, many of whom are at increased risk of morbidity and mortality^[8]. Following cancer treatment, it is reported that about two thirds of survivors of cancer in childhood and adolescence, have at least one physical or psychological problem affecting their health and well-being and around one quarter have had a severe or life threatening late complications of therapy. Greater awareness of these problems dictates the need for vigilant long-term follow-up of survivors, with early intervention, treatment, and appropriate counselling. There is no available evidence to define an optimum model of follow-up for long-term survivors, and there is currently wide variation in the time that survivors are discharged from follow-up clinics. Indeed many survivors are followed up in paediatric oncology clinics long into adulthood. In addition, there is increasing recognition that current practice, in many cases, does not meet the psychological or social needs of survivors.

The MSN intends to develop a robust and integrated national system of follow-up to meet the needs of a growing community of children, teenagers and young adults who have survived cancer. The Survivorship Initiative, led by the Clinical Lead for Late Effects, aims to improve services for survivors by developing a risk-based approach^{[9] [10] [11]} to follow-up, in an age-appropriate environment, with the introduction of key workers and nurse-led services, supported by a web-based electronic system. This service will provide health surveillance, together with psychosocial support and education of survivors to encourage them to develop into independent adults.

A recent Scottish study has shown that therapy-based, risk-stratification of long-term survivors of childhood and teenage cancer can safely predict which patients are at significant risk of developing moderate to severe side effects and require high intensity long-term follow-up^[12]. Furthermore, it has been identified that the development of a nurse-led service, supported by the Late Effects MDT, with protocol driven health surveillance, would be appropriate for more than half of survivors. The MSN has recently appointed a National Late Effects Clinical Nurse Specialist to scope the requirements for the development of a nurse-led service.

The MSN is committed to the introduction of an integrated and systematic approach across Scotland, developing models of care to ensure that those living with and beyond cancer have access to safe and effective care and receive the support they need to lead as healthy and active a life as possible^[13]. Improved awareness of cancer survivorship as a chronic health problem will facilitate the development of care pathways that will meet the needs of every patient throughout their lifetime.

Long term follow up services must be flexible enough to accommodate the needs of young survivors as they grow older and their differences, reflecting the wide range of treatment exposure and adverse long-term sequelae. Development of a service that can deliver individualised, comprehensive, therapy-based care is essential. The Late Effects Clinical Nurse Specialist will play an integral role in this service.

Improved communication of cancer information to patients and their families and between health care providers may contribute to greater engagement in follow-up programmes. It also raises awareness of potential late effects amongst survivors and enables clinicians to diagnose and, where possible, treat late effects earlier. Based on national guidelines, we have developed a template for the End of Treatment Summary and Individualised Care Plan, or 'Health Passport', which was introduced nationally in January 2012, and welcomed by health professionals and survivors.

Stratification of patients according to risk of late morbidity will make best use of NHS resources and provide age appropriate care as locally as possible. With increasing time from completion of treatment, it is hoped that the majority of adult survivors will be independent and take responsibility for their own health, with health care support provided by their primary care physician and with a readily identifiable pathway back in to the hospital system when indicated. As a result, the primary care team is likely to play an increasing role in the long-term follow-up of survivors of childhood cancer. Good communication between the hospital services and primary care will be essential. The introduction of the web-based personalised care plans will facilitate the long-term care of survivors by family doctors^[14].

Structured, risk-adapted follow-up of childhood cancer survivors, following evidence-based guidelines would reduce unnecessary evaluations and focus individual health care delivery. Education of survivors and health care providers will reduce the burden of chronic health problems and improve quality of life for the growing population of children and young people who have been treated for cancer.

The MSN will introduce an integrated and systematic approach to long term follow-up based on risk.

Teenagers and Young Adults

The MSN is committed to ensuring that a strategy is developed for teenagers and young adults with cancer in Scotland which is consistent with approaches adopted in other UK countries. A pan-Scotland teenagers and young adults' service will ensure that all young people will have access to age appropriate care.

Standards of care will be developed as will the development of a national Multi-Disciplinary Team (MDT) for the discussion of all teenage and young adult (TYA) cancer cases. The TYA MDT will ensure a holistic approach to care, which is sensitive to the needs of this age group.

The MSN will work with key third sector partners, including the Teenage Cancer Trust and CLIC Sargent, in the development of age-appropriate services for young adults, including making recommendations on age.

The MSN will develop services appropriate to the needs of teenagers and young adults up to age 25.

Palliative Care

Any diagnosis of cancer in a child or young person is a Life Threatening Illness (LTI). Fortunately medical advances over the last 50 years now mean that 70% of children and young people are cured. However, this still means that 30% of children and young people in Scotland who are diagnosed with cancer will die of this disease or a second cancer. The requirement for palliative care may therefore be identified at the point of diagnosis or may become apparent as the health of an individual patient deteriorates, or the care requirements and need for symptom control increase.

Palliative and end of life care are integral aspects of the care delivered by any health or social care professional to those living with and dying from any advanced, progressive or incurable condition. Palliative care is not just about care in the last months, days and hours of a person's life, but about ensuring quality of life for both the child or young person and their families/carers at every stage of the disease process from diagnosis onwards. A palliative care approach should be used as appropriate alongside active disease management from an early stage.

Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of the child or young person and their parent or carers facing progressive illness and bereavement.

Furthermore, the child or young person can move in and out of palliative care because of successful medical interventions. This clearly applies to the child or young person with cancer where the main intent of treatment is cure but where we have to ensure in every case that treatment of distressing symptoms caused by the cancer or the treatment are managed appropriately.

Children and Young people with cancer will be diagnosed within appropriate secondary, tertiary and quaternary children's services in Scotland and they will receive much of their ongoing care within these services. The stages of the treatment journey each child and family travels is outlined in Figure 2.

The MSN will ensure that palliative care is embedded in all stages of the child or young person's illness and care. The Scottish Children and Young People's Palliative Care Executive (SCYPPEx) group has recently developed a framework for palliative care services for children and young people^[15] which includes a self check assessment. The recommendations outlined within the Framework should apply equally to primary, secondary and tertiary care. The MSN supports the use of the Framework for those children and young people with a diagnosis of cancer.

Although treatment for Cancer in children and young people is ever more successful approximately 30% of children and young people will die of their cancer or as a result of a complication of their treatment. There is accumulating evidence that children young people and their families express a preference for death at home or at least close to home. This is different from where they wish to receive curative treatment which is at tertiary facilities which offer the best chance of cure^[16].

Statistics for Scotland demonstrate that, overall, the majority of children die in hospital. This is despite the preference for home death in patient and parent surveys. There are many explanations for this which require to be explored to ensure that lack of local facilities and services is not the main cause.

Providing end of life care to children or young people who have been cared for in a very intervention oriented hospital environment is a challenge but by following the principles and guidance in the Framework document this challenge can be addressed.

Figure 2: Stages of Journey for Children and Young People with Cancer

Good palliative care is a vital part of oncology care, and as such, the MSN recognises and supports the continuing requirement for a Clinical Lead for Palliative Care. It is important that palliative care for children and young people with cancer is seen as part of an overall cancer treatment. By joining forces with other subspecialties common needs will be more likely to be met. It is essential that there is a good network developed between primary, secondary, and tertiary care, to ensure that children, young people and their families have access to the right care in the right place at the right time.

The MSN will introduce and support the development of the Framework for Palliative Care for Children and Young People.

Care Pathways and Disease-Specific Considerations

Developing a blueprint for care of individuals and, at the same time, generating a plan for overall care pathways, is one of the major tasks the MSN faces. The plan will require effective use of finite resources, clarity of organisational structure and coordination of, and collaboration by, all those involved. It will also require an assurance process with a continuous feedback loop to maintain quality. Responsibilities, expectation and leadership need to be explicit from the outset. Pathways must provide consistency, context and reference but not be so inflexible as to create barriers.

Existing Care Pathways

Provision of care must be founded on a number of principles, including:

• Consistency in access irrespective of social, economic and cultural background or location.
• Local care, when possible and if preferable, but access to specialist care when required.
• Clinical, social, and psychological support at every stage, in every place.
• Timely access to specialist assessment, diagnostic investigation and interdisciplinary team management.
• Every opportunity for involvement in clinical trials.
• Continued surveillance post-treatment, as required.
• Continuum in quality from primary to tertiary care.

Care Pathways also have to accommodate a number of additional factors, including: Condition specific considerations; the need for family and social support; choice - of patients and their parents; centre capacity and availability and the requirement to access clinical support services.

Pathways within Scotland

Pathways are already developed and, if functional and satisfactory at present, should be evaluated for their sustainability, but no assumption will be made about retention of existing facilities and workforce. The MSN needs to be vigilant and sensitive to the numerous pressures, drivers and changes which affect the availability and style of the existing service. Additionally, the MSN should determine future care pathways based on feasibility and practicality of their ability to deliver according to need.

At present, these pressures include:

• Increasing and proper emphasis on a consultant delivered service;
• reducing numbers of specialist registrars in paediatric specialties;
• regulation of working hours for both trainees and consultants;
• increasing regulation of entry conditions into clinical trials;
• continuity of service 24 hours each day and 365 days a year; and
• sustainability of the consultant workforce.

Criticisms of existing care pathways surround their evolution which has less to do with health care strategy or premeditated clinical consensus but more, that they have been opportunistic and often forged through the informal contact of the clinicians involved. If effective, then that model may be acceptable. Equally it may reflect a lack of consistency, cohesion and congruence and be potentially at odds with the delivery of other pathways and responsibilities within the same health care systems.

Some children and young people currently receive different elements of care in different Health Board areas, for example, the same child in Dumfries may access endocrinology in Edinburgh, chemotherapy in the Royal Hospital for Sick Children, in Glasgow and have neurosurgery in the Southern General Hospital, in Glasgow. This example, might suggest inconsistency and lack of continuity unless very carefully managed. Similarly, one child/young person from Highlands can have surgery and chemotherapy for a solid organ malignancy in Aberdeen and the next child/young person having leukaemic care will be managed in conjunction with Glasgow. These arrangements subject referring clinical staff, particularly nursing staff, to a range a different policies and practices, for example, in central line care, adding unnecessary complexity to their duties.

Care Pathways are therefore less about where care is delivered than they are about the need for consistency in standards and policies and crucially, real-time decision-making, implementation and recording.

The MSN through its governance and quality assurance work stream will maintain scrutiny and change as required on grounds of quality or as directed by evidence-based information.

Pathways out of Scotland

Referral outside Scotland is condition specific and is usually provided within a national contract agreed by National Services Division (NSD) with UK and other specialist commissioning and provider units. These conditions and treatments are highly specialised and access to such is tightly controlled through NSD. These pathways include referral to Birmingham Children's Hospital for Retinoblastoma; referral to Kings College, London for Liver Tumours and referral to University of Florida in the USA as part of a UK agreement for Proton therapy.

The MSN will ensure that the care integrates with care plans available within Scotland and receives congruent and collaborative management.

The impact on children, young people and their families of a referral to a hospital remote from home - either in England or abroad - is enormous. As a result it is important that the clinical benefits to the child or young person of such a referral outweigh the disruption to the child and family. The MSN will work with NSD to ensure clear, consistent, care pathways for such referrals, which are integrated with services close to the patient's home, and which ensure the involvement of further expert clinical opinion to supplement and confirm the initial assessment. The MSN will support this process through the governance and quality assurance committee.

Pathways - future developments

Future developments of care pathways will seek to ensure both accurate and rapid diagnoses, reduce the burden of treatment and produce outcomes from care that are equal to the best available.

Preparatory work, instigated by the MSN through a review of existing sites and services, suggests little redundancy either in terms of workforce or indeed of the existing facilities. The MSN is also mindful of the plans for new builds of RHSC Edinburgh and Glasgow. Those plans, now well underway, need to assure the existing capacity as a minimum for cancer services, to avoid any unintended consequences to care plans and unintended changes to referral practices over the short to mid-term.

Mitigation against disruption of the service will be best achieved by clarity around expected and accepted pathways.

The MSN is also mindful of the parallel work being done by the MSN for Neurosurgery and close cooperation between that MSN and the MSN for Children and Young People with Cancer to design and assure appropriate pathways for neuro-oncology will be essential.

Clinical leadership and coordination are key to the success of any care pathway, the more complex, the greater the need. A good support system requires flexibility and consistency in equal measure. These apparent contradictions exemplify the complexity that cancer care involves, but it is crucial that the MSN does not recreate a "paternalism" that has little place in clinical behaviours. A facility to customise and individualise care, provide for the exceptional yet produce consistency, is a challenge.

The following will be essential ingredients of the care plan that each child and young person receives:

• A key worker;
• Consistent care from primary through shared care to the primary treatment centre
• support for family;
• Recognition and appreciation of the role of charities and voluntary sector;
• Coordinated and careful follow-up;
• Care informed by international research and treatment options;
• Ongoing planning informed by outcome analysis;
• Predefined journey for each child and young person from presentation and referral through diagnoses, treatment, supportive care, rehabilitation and palliation, when required.

The MSN will impose no boundaries or limits in the pursuit of a cure, but when palliation is required, every avenue will be explored to ensure care at home, where that is what is needed.

The MSN will review existing Care pathways to ensure that these deliver consistent, safe and effective care for all patients.

Interfaces and Interdependencies

The third sector plays an important and increasing role in the support of children and young people with cancer and their families. There are, however, a wide range of nationally and locally based organisations and the MSN is committed to engaging at different levels, as appropriate. Some third sector partners, particularly CLIC Sargent and the Teenage Cancer Trust also provide funding for specific posts and services, which is extremely important in the delivery of holistic care to children and young adults.

The MSN is keen to engage with all relevant organisations and will explore how this can best be achieved to ensure involvement across the scope of the MSN.

The MSN will ensure involvement of third sector partners in key decisions about services for children and young people with cancer.

Patient and Parent Involvement

The MSN needs to gain insight into the service across Scotland through the experiences of patients and their parents or carers which reflect current services. Representation of patients and their families will be important throughout the MSN framework.

CATSCAN had particular success, through the work of parent representatives in the development of accessible and appropriate pre-treatment DVDs aimed at children. The MSN will build on this success and will seek to engage across Scotland, and provide support for those who seek to represent the views of service users.

The MSN will harness the experience of patients, and their parents or carers, to inform the shape of services for children and young people with cancer.

Workforce

Key to sustainability will be an appropriately skilled and available workforce, trained to deliver the best treatments. Care will be delivered by teams, within and between different centres in Scotland. The MSN will need to ensure that there are sustainable skills and competencies within individual centres and that the overall aim of the MSN can continue to be delivered. This will include providing oversight of all medical appointments and ensuring that services for children and young people with cancer are supported by appropriate workforce plans.

Funding

Through the National Delivery Plan for Specialist Services^[17] £3.2m of additional investment has been made in cancer services for children and young people, with the majority, (£2.4m) going into supporting front line services. There has also been further investment in the National Bone Marrow Transplant Service in Glasgow and in the Edinburgh service to ensure that it can provide the level of service expected of a Principal Treatment Centre.

A small amount of funding was allocated to Scotland-wide initiatives identified elsewhere in this plan, including funding of key clinical leadership posts and the Late Effects, Palliative Care and Teenagers and Young Adults projects.