Section 3 - The Way Forward
This cancer strategy embraces change and is founded on the principles within the Scottish Government's 'Realistic Medicine' movement and the core components of 'Getting It Right for Every Child (GIRFEC)'. Our previous cancer plan highlighted the need to ensure our efforts fully embraced the principles of GIRFEC and this approach has again underpinned our future policy direction. The strategy provides the foundations and structure for planning, monitoring and sustainability and, in adopting this third publication for children and young people's cancer, we will support practitioners to have the confidence and skills to drive forward improvement for better outcomes for their patients and the communities we serve.
In December 2020, the Cabinet Secretary for Health and Sport announced the publication of a National Cancer Plan 'Recovery and Redesign: An Action Plan for Cancer Services' (Scottish Government, 2020b). The plan will drive a 'Once for Scotland' approach to cancer service delivery and aims for equitable access to care and treatment across Scotland. To support the Plan's implementation, the Scottish Government has created a national Scottish Cancer Network which will work towards all existing national cancer networks, including the MSN CYPC, becoming part of this new approach. The Scottish Cancer Network will drive improvements as well as supporting common pathways, expectations and experiences for patients. In addition, the new national Centre for Sustainable Delivery (CfSD) will develop new innovative improvement programmes to support our approach to COVID-19 recovery focusing on cancer performance and early diagnosis. The MSN CYPC will ensure our cancer services are fit for purpose as part of the national 'redesign for recovery' of NHS Scotland.
Our Ten Ambitions
At the core of our ten ambitions are fundamental requirements to ensure collaborative learning and a commitment to service improvement. It is envisaged that by aligning all involved in cancer care to similar values, this strategy will bring benefit to our children and young people. To drive these ambitions, our new national workstreams and their leadership will focus on the design and delivery of services, creation of the evidence base for improving practice and educational governance. Whilst the principles of each ambition span across all age ranges, ambitions one to nine are focused on both paediatric and TYA services; with ten aimed specifically at TYAs in adult services to ensure appropriate representation of this age group.
Our Ten Ambitions between 2021 – 2026
Our Vision: A once for Scotland, specialist, multidisciplinary and age appropriate service for all children and young people who are living with and beyond cancer
Our Aim: A national service that strives to improve clinical outcomes, psychosocial care and patient experience
- Ambition 1 – Enhancing and Improving Outcomes
- Ambition 2 – Equity of Access
- Ambition 3 – Incorporated Supportive Care Services
- Ambition 4 – Service Improvement and Patient Safety
- Ambition 5 – Continuing Care when Treatment Completes
- Ambition 6 - Integrated Palliative and End of Life Care Services
- Ambition 7 – Collaborative, Compassionate and Inclusive Leadership
- Ambition 8 – Education, Training and Staff Support
- Ambition 9 – Specialist and Sustainable Workforce
- Ambition 10 – Age Appropriate Services and Effective Transitions
Ambition 1 – Enhancing and Improving Outcomes
Objective: An integrated multidisciplinary team approach to treatment decisions for all children and young people to ensure the most precise diagnosis is made as early as possible and treatment decisions are made that are evidence based
A cancer diagnosis is now made with a high degree of precision, as a consequence of rapid evolution in the knowledge of molecular genetics. Such diagnoses are increasingly complex and require the correct tissue, consistent laboratory processes, expert pathologists and multidisciplinary cancer teams. In support of this, it remains an objective of the MSN CYPC that cancer services have the correct infrastructure and appropriate funding to ensure all patients have the right diagnosis made as early as possible.
Research is integral to all aspects of cancer care. Improving outcomes is not just achieved through single breakthroughs, but more often progress is dependent on incremental advances in multiple areas. This includes precise diagnostics and prognostic assessments, which will enable more appropriate selection of treatment protocols and identification of those at risk of treatment toxicity; enabling a better balance to be made between treatment and quality of life.
All children and young people with cancer should have the genetic and molecular profile of their tumour characterised. This enables appropriate new treatments to be offered and facilitates future drug development. The achievement of this basic standard of modern personalised medicine is contingent on the funding of the Scottish Genetic Laboratory Consortium ten prioritised molecular pathways.
Tumour banking allows for potential future drug target screening and other research. Such banking is standard practice within paediatrics using the Children's Cancer and Leukaemia Group (CCLG) facility. This is less utilised within the TYA population. The CCLG tissue bank is a resource available to TYAs and its use is encouraged by the MSN CYPC. National and multidisciplinary working with our MDTs, supported by data collection, is essential to deliver this. MDTs are an essential part of integrating complex diagnostic and prognostic information, thus agreeing an appropriate treatment plan. The MSN CYPC has successfully introduced local, regional and national MDT working for a number of patient groups.
The gold standard for clinical research is the randomised clinical trial (RCT). Within paediatric oncology the RCT is considered to be the standard of care. We intend that children and young people are offered the benefits of being in trials. Where case numbers are small, this approach is vital if we are to generate the evidence to treat cancer better in children and young people.
For children, pathways for diagnostic biopsies in paediatric cancer centres are well established with diagnoses made by paediatric pathology, haematopathology, sarcoma and neuro-pathology and involving specialist adult pathology teams when required. Treatment decisions for TYA patients continue to be made at adult site specific MDTs with holistic care considered at the weekly national TYA MDT. One of the MSN CYPC's previous performance indicators is that all patients will have national MDT agreed diagnoses and treatment plans. Management plans for children with central nervous system tumours and solid tumours are made at weekly regional MDT meetings hosted by Glasgow and Edinburgh.
Children from Aberdeen with a central nervous system tumour or solid tumours are discussed at the Edinburgh and Glasgow MDTs respectively. The arrangement for shared care with Dundee is provided in partnership with Edinburgh. It should be noted the MSN CYPC recognises that due to increasing service demand, shared care services are now being provided by other district general hospitals (Appendix 2). The MSN CYPC will work with these Health Boards to support the paediatric haematology oncology inpatient care work which is being delivered, ensuring that arrangements are formalised, recognised and appropriate pathways developed.
The MSN CYPC will promote and monitor access of children and young people to clinical trials. Treatment within a clinical trial is considered to provide a high standard of care, often providing access to new therapies or by trialling new methods of delivering tested medicines. Stepwise improvement in cancer survival rates have been seen as a result of clinical trials. The Scottish Government recommends that all children, teenagers and young adults with cancer participate in clinical trials.
However data collected by the MSN CYPC has demonstrated that many children and young people, particularly those in the TYA group, are not treated on clinical trials. A lack of available front-line clinical trials for common cancer within this age group is the main factor. There are situations where inequitable access to a clinical trial is seen within Scotland. MDTs serve to highlight such discrepancies. In addition it is clear that there has been an affect of the COVID-19 pandemic on clinical trial entry, with many trials closing to recruitment for periods of time. Reluctance to travel or being away from home has also impacted.
Fewer TYAs are recruited to trials and have seen less improvement in survival over time. To explore the barriers to participation in cancer trials amongst TYA patients, caregivers and health professionals and the representatives of the MSN CYPC have been working in collaboration with Edinburgh University, funded by the Chief Scientist Office (CSO). Initial findings have indicated there are few relevant trials for this age group, competing pressures for opening trials and delays in regulatory processes in opening trials.
There is an increasing population of young adults living with and beyond cancer, many of whom who are at increased risk of ill-health due to long term side effects of cancer therapy. We need to support clinical research studies to allow these young people to enrol so that we can learn together which of them requires more intensive surveillance and which can be more strongly reassured and directed to support for life after cancer, as highlighted within Ambition 5.
For patients with relapsed or refractory diseases, molecular profiling may facilitate access to clinical trials where new treatments are offered. It is a priority for the MSN CYPC to ensure clinical trials are offered within Scotland. For this, networking and national collaboration are essential. This may be done within the context of the MSN CYPC Relapsed Disease MDT.
1. Ensure all children and young people have access to tumour banking for precision medicine, to guide current and future treatment
2. Work closely with the Scottish Government to source funding for future allocation to support the Scottish Genetic Laboratory Consortium ten prioritised molecular pathways
3. Advocating for and supporting the enrolment of children and young people to the national childhood cancer diagnostic study, up to 18 years old
4. All patients will be discussed at regional and / or national MDTs to ensure access to innovative treatments and appropriate clinical trials
5. All children and young people should be enrolled on a clinical trial when possible
6. Continuation of support and expanding the number of early phase clinical trials available within the network, when possible, currently provided in partnership with Newcastle and Northern Ireland for children and teenagers
Ambition 2 – Equity of Access
Objective: Maximising health outcomes by ensuring that no child or young person is disadvantaged from accessing high quality treatment due to socially or environmentally determined circumstances
It is of concern that there may be variation in the provision of health care across Scotland for children and young people with cancer. The MSN CYPC will examine this to understand the nature of any disparities with the aim of ensuring equitable care for all.
This will require data collection to measure compliance with expected outcomes. The MSN CYPC developed, in partnership with NHS National Services Scotland, an Enhanced Cancer Registry as part of the national Scottish Cancer Registry in 2016 to collect an enhanced diagnostic, staging, treatment and prognostic dataset to inform clinical and research outcomes and drive improvement in services for children and young people. Therefore the use of the Enhanced Cancer Registry as a single data collection system will continue to be required. Such data will be collected through the MDTs with the support of the MSN CYPC MDT Co-ordinators and individual Health Board Data Managers.
High quality cancer data and intelligence will bring about benefits for the entire cancer journey. The ability to have regular standard reports on incidence of cases, how and where patients are treated, survival, patient safety, mortality and morbidity outcomes, will all form an integral part of our clinical governance role.
Radiotherapy provision for Adults (including 16-25 year olds) is available in all five Scottish Cancer Centres and is managed and delivered by the relevant site specialist team. Children in Scotland requiring external beam radiotherapy as part of their treatment are currently referred to either Edinburgh or Glasgow where discussions and decisions occur about the most appropriate treatment modality.
Since 2008, children and adults who require a form of radiotherapy called proton beam therapy (PBT), have accessed treatment through the NHS England proton overseas programme (NHSE POP) and are treated at The Christie in Manchester or, in the past, the United States, Germany and Switzerland. A further centre is due to open at University College London Hospital in 2021. It is anticipated these two UK centres will become fully operational and absorb all UK PBT provision by late 2021 or early 2022.
Children in Scotland receiving photon radiotherapy currently receive treatment in Edinburgh or Glasgow. Anticipated photon radiotherapy activity figures published in 2019 expect 60% of paediatric radiotherapy will be delivered using PBT within 2 years. This will inevitably lead to a reduction in the number of children requiring photon radiotherapy delivered in Scotland.
In light of this, the provision of paediatric radiotherapy in Scotland has been reviewed by the MSN CYPC and regional Health Boards with a view to developing a single site national service for Scottish paediatric radiotherapy. This is currently under early stage submission to NHS National Services Division for commissioning.
The National Allograft Stem Cell Transplant Service for Scotland is located in Glasgow and provides all allograft activity for children, young people and adults.
The policy of the MSN CYPC is that all stem cell transplants should be performed in JACIE (Joint Accreditation Committee International Society for Cell and Gene Therapy Europe and European Society for Blood and Marrow Transplantation) accredited units.
|Name of Centre||Status|
|Aberdeen||No service||Application in Progress|
|Dumfries and Galloway||No service||No service|
|Dundee||No service||No service|
|Inverness||No service||No service|
Molecular radiotherapy with metaiodobenzylguanidine (MIBG) for a selection of neuroblastoma paediatric patients is currently provided at the University College London Hospital (UCLH). The physical infrastructure for such a service was included in the building of the Royal Hospital for Children in Glasgow.
The Scotland Molecular Radiotherapy Service (SMaRT) is based in Glasgow and offers targeted radiotherapy services to children and young adults with malignancy in particular neuroblastoma and thyroid cancer. The Autograft required post high dose molecular radiotherapy will be carried out at the National Transplant Centre.
7. Continued 'Once for Scotland' approach to the collection of high quality data and review using the Enhanced Cancer Registry, further developing to include an analytics function to provide dashboard reporting
8. Implementation of a single national radiotherapy service for children within Scotland
9. Commissioning of a national meta-iodobenzylguanidine (mIBG) paediatric service for Scotland
Ambition 3 – Incorporated Supportive Care Services
Objective: Ensuring enabling approaches are used, including reablement and rehabilitation, with psychologically informed approaches to support self management, resilience and mental health in individuals and communities
The delivery of a high quality cancer service for children and young people, whilst supporting the holistic needs of patients, remains a priority for the MSN CYPC. Services such as Allied Health Professionals (AHPs) and Psychology work alongside other disciplines to ensure integrated and holistic care which should be in line with clearly defined pathways that incorporate proven screening and assessment tools as standard, at key intervals along the patient's pathway. The MSN CYPC will continue to prioritise supportive care and health promotion. Our AHPs and psychologists will be central to delivering this.
AHPs are highly skilled professionals and are uniquely placed to offer holistic assessments of needs when a child or young person is diagnosed with cancer. They endeavour to provide individualised support across the whole pathway from diagnosis, through active treatment, to living with and beyond cancer; inclusive of palliative and end of life care. They help children and young people to live healthy, active and independent lives, helping them to achieve what matters most to them.
In addition, AHPs support people of all ages and their families during their cancer journey. AHPs aim to maximise participation and independence within activities of daily living to improve the child or young person's physical, emotional and mental wellbeing (inclusive of regaining movement and mobility), maximising nutritional status, improving communication and life choices and restoring confidence in everyday living skills. Timely, supportive and personalised goals aim to build resilience during the cancer journey, enhancing the child or young person's quality of life, even when faced with life limiting conditions.
More specifically, nutritional support is an important part of supportive care in children and young people throughout their cancer journey to prevent both under and over nutrition. Ensuring children and young people are adequately nourished is essential during treatment to help maximise treatment tolerance and outcome, reduce complications and improve quality of life whilst aiming to achieve appropriate growth and development. On completion of treatment nutrition can continue to play an important role as being a modifiable factor in helping to reduce long term health problems (Cohen et al, 2020). To achieve this aim, children and young people require to be assessed and advised by a paediatric trained dietitian specialising in haematology and oncology (NICE, 2005).
A recent AHP cancer workforce scoping exercise has highlighted concerning gaps in both paediatric and TYA trained specialist AHPs dedicated to cancer services; across all treatment centres in Scotland. Equity of access to support services is a key ambition for the MSN CYPC.
To deliver this high standard of supportive care, it is essential that the MSN CYPC ensure there is a sustainable and highly skilled AHP workforce across Scotland. In 2020, the MSN CYPC held a number of workshops involving service users and health care professionals working within NHS Scotland cancer services. It was highlighted that there were gaps in supportive care and a clear request for nutritional and exercise advice after cancer treatment; two modifiable factors which can help reduce long term side effects and toxicity of treatment along with reducing the future burden on the NHS.
The evidence is growing to support the role of physical activity during and after cancer treatment. Keeping active throughout the Cancer journey can preserve or improve physical function and psychological well being, reducing the negative impact of some cancer related side effects. Regular physical activity also has a potential role in reducing risk of cancer recurrence and increasing survival. The MSN CYPC recognises the importance of integrating evidence based promotion of physical activity into patient care along the cancer care pathway (Macmillan, 2012).
For Paediatrics, physical activity will be informed by the Children's Cancer and Leukaemia Group publication 'Keeping Active During and After Treatment' (CCLG, 2017) and the World Health Organisation 'Guidelines on Physical Activity and Sedentary Behaviour' (WHO, 2020). For TYAs, physical activity will be informed by the Macmillan guidance on interventions to promote physical activity for people living with and beyond cancer and the Teenagers and Young Adults with Cancer best practice statement for physical activity and exercise (TYAC, 2016). This will be supported through a universal and targeted approach. A number of specialist health professionals will have a key role in delivering this; however we also recognise the valuable contribution of our wider community services.
Furthermore, the MSN CYPC recognises and aims to ensure that appropriate and timely information is provided to children and young people throughout their treatment. To achieve this, despite the gaps in AHP resources, the MSN CYPC proposes using a tiered model of service provision for children, young people and their families. This is based on a continuum of universal, targeted and specialist support (Scottish Government, 2016b) delivered by the wider (community teams) and specialist (primary and shared care treatment centres) workforce; working together and supported by a platform of training and development (competencies and learning packages).
In doing so, the MSN CYPC will provide targeted, age appropriate and quality assured information and resources. The AHPs will collaborate to develop an educational resource package which will be utilised at diagnosis as pre-habiltiation and at the end of treatment to improve outcomes, quality of life and to build resilience; empowering parents, carers and young people. It will cover key evidence based information; for example, the importance of optimising nutritional status, the benefits of physical activity and keeping active, promoting participation in daily tasks and how to support communication skills.
With this resource in place, AHPs will be enabled to provide early identification and intervention to those at higher risk, through the implementation of screening tools and more intensive input during cancer treatment. There is also an identified need to develop aftercare pathways to ensure children, young people and their families can access AHP services as close to home as possible (Scottish Government, 2017a). Currently there is no dedicated AHP service embedded within aftercare.
To support this and the co-ordination of high quality, timely and person centred AHP services across Scotland that meets the needs of children, young people and their families; the MSN CYPC will create a national AHP professional leadership position. This new role will engage with medical, nursing, psychology and other colleagues including partners, communities, integrated joint boards and third sector organisations to ensure AHPs are integral to the development and implementation of evidence based clinical pathways. Thus ensuring consistency of provision and appropriate resource allocation nationally. The position will be key to informing plans for the future development of children and young people's cancer services, raising the profile of AHPs and demonstrating the integral contribution that AHPs can make to these services. Furthermore, the role will provide professional and expert clinical opinion in this area of healthcare.
Alongside AHPs, the MSN CYPC recognises and supports the important contribution that Health Play Specialists make to the MDT and children and young people. Using play as a tool, Health Play Specialists input can assist children and young people to make sense of what is happening to them, work through their concerns and worries and assist in their coping.
The MSN CYPC also recognises the importance of and the requirement for further support in relation to mental health and psychological wellbeing, as highlighted regularly by young people and their families. There is widespread acceptance that the relationship between physical and mental health is such that poor mental health is linked with a higher risk of physical health difficulties. In addition, poor physical health is linked with poor mental health. Psychologists have a key role in supporting mental health and wellbeing as well as helping children, young people and families to engage with other rehabilitation specialities.
A 'parity of esteem' approach enables services to provide a holistic, 'whole person' response to each young person and their family, with their physical and mental health needs being treated equally. The Scottish Government's Mental Health Strategy (2017-2027) sets out the importance of "preventing and treating mental health problems with the same commitment, passion and drive as we do with physical health problems". The strategy highlights the importance of prevention, early intervention and equitable access to integrated, multidisciplinary care (Scottish Government, 2017b).
The psychological and emotional impact of living with and beyond cancer is well documented and can range from "normal feelings of vulnerability, sadness and fears to problems that can become disabling such as depression, anxiety and panic" (National Comprehensive Cancer Network, 2020). Recent evidence also indicates that the COVID-19 pandemic has had a significant adverse impact on the mental health of young people (Young Minds, 2021).
This adds to the well documented experience of stress and distress among patients and staff within oncology services throughout the pandemic (British Psychological Society, 2020).
Positive mental health is essential to the overall health of children and young people, therefore the MSN CYPC will look beyond clinical outcomes to ensure that psychologically informed care and mental wellbeing are at the heart of practice within our services. In doing so, the MSN CYPC will support age appropriate programmes of training and education which are specifically focused on equipping staff with the skills and knowledge they require to recognise the symptoms of distress and poor mental health and to signpost to appropriate services.
For paediatrics this approach will be informed by the NHS Education for Scotland (NES) Competency Framework for Psychological Approaches and Interventions in Multidisciplinary Paediatric Healthcare Settings (NES and University College London, 2018) and the accompanying Training in Psychological Skills – Paediatric Healthcare portfolio (NES, 2018). For TYAs this will be informed by the West of Scotland Cancer Network (WoSCAN) Psychological Therapies and Support Framework (WoSCAN, 2017) and the accompanying NES Psychological Skills in Physical Healthcare portfolio (NES, 2019).
The MSN CYPC acknowledges the valuable contribution of specialist clinical psychology input in our paediatric and TYA populations to enhance the delivery of psychologically informed care. The National Institute for Health and Care Excellence (NICE) recommends that the core components of a Principle Treatment Centre includes "designated lead psychological services on site" and that a "psychological services professional" be part of the core medical team, both during treatment and aftercare (NICE, 2005). In addition, the quality standard suggests that children and young people and their families should have access to expert psychological support with clear routes of referral in all settings. While all team members have a role in the delivery of psychological and emotional support with appropriate training, education and support to do so, this should be delivered alongside an identified psychologist with expertise in the care of children and young people with cancer who can support and implement the following key tasks:
- a structured psychological assessment at significant points in their care pathway (including diagnosis, on treatment, end of treatment, during long term follow up, at relapse, during palliative care and at bereavement and evidenced based psychological intervention to address any difficulties identified
- assessment of family needs and coping skills and supports put in place to address;
- assessment of the psychological needs of siblings and supports put in place to address;
- access to neuropsychological services for cognitive assessment, particularly those with central nervous system tumours and also to guide schooling and career decisions
- availability of specialist neuro-rehabilitation services, including neuropsychological diagnosis and intervention when required
- encouragement of peer support groups, sibling and family support groups
Whilst the MSN CYPC will provide a new leadership position for AHPs as part of the delivery of this strategy, it is recognised that strategic leadership will be required to support the future direction of psychological therapies within children and young people's cancer services. At present this strategy focuses on ensuring and delivering equity across age related clinical psychology services; however the MSN CYPC will make a commitment to work towards delivering a psychology leadership role as part of our future direction.
10. Substantive funding provided by the Scottish Government, directly to Health Boards, to support the recruitment of specialist AHPs across all treatment centres that provide care to children and young people with cancer based on the recommendations of a workforce scoping analysis
11. Health Boards will ensure equitable and timely access to specialist AHP assessment and interventions at all stages of the cancer journey, regardless of age, stage of treatment or geographical location
12. Substantive funding and appointment of national AHP Lead within the MSN CYPC to ensure strategic service delivery across Scotland
13. Evaluate the needs of children, young people and their families in relation to current AHP service provision for cancer services
14. Develop and implement a national AHP resource package which all children and young people will receive at diagnosis and at the end of treatment, which can be audited to ensure it meets the holistic needs of service users
15. Develop a competency framework for AHPs working with children and young people affected by cancer across Scotland based on the results of an educational / training needs analysis exercise
16. Substantive funding provided by the Scottish Government, directly to Health Boards, to ensure equitable access to specialist, age appropriate psychological and neuropsychological assessment and evidenced based interventions during each stage of the cancer pathway, delivered in paediatric and TYA settings
17. Support psychological health by the implementation of national emotional wellbeing training packages, provided by NHS Education for Scotland, with peer support groups initiated to support learning into practice
Ambition 4 – Service Improvement and Patient Safety
Objective: Ensuring safe and high quality cancer care
Cancer treatment should be delivered in a consistent and safe way. Consistency through Scotland ensures that there is no inequity of care with patient safety ensured through a national governance framework. This therefore supports the delivery of nationally agreed Systemic Anti-Cancer Therapy (SACT) protocols. For the majority of treatment protocols, the MSN CYPC will align with UK National recommendations such as those from the Children's Cancer and Leukaemia Group. Treatment decisions will be supported through regional, Scotland wide and UK national MDTs.
The delivery of safe SACT is subject to national standards. These include the use of chemotherapy electronic prescribing and administration systems (CEPAS). The Scottish Government has provided a governance framework for the safe delivery of SACT for children, young people and adults undergoing medical treatment for cancer as set out in the SACT Chief Executive Letters (CEL) 21 (Scottish Government, 2009a) and CEL 30 (Scottish Government, 2012a). In 2021, the Scottish Government convened a short life working group to review the current CEL 30 (2012) guidance to ensure the guidance on the safe delivery of SACT accounts for recent innovations in medicines, digital transformation and COVID-19 service changes. Representatives of the MSN CYPC have joined the membership of this group to ensure the guidance reflects the needs of children and young people's cancer services.
In 2019, the MSN CYPC commissioned a national scoping exercise to determine any variability of working practices across Scotland and the feasibility of implementing a shared CEPAS. This work concluded that a national approach would enable the introduction of standardised practices and processes. Therefore the MSN CYPC will work towards implementing a national CEPAS and will join the national CEPAS oversight group to support a collective governance approach to future implementation. It is recognised that significant resource will be required to achieve a national CEPAS for the MSN CYPC.
The MSN CYPC will produce a national business case to determine the allocation required to ensure successful delivery. We will ensure dedicated pharmacy leadership is provided to navigate the MSN CYPC to success in this area whilst continuing to support the safe delivery of SACT, demonstrating compliance with standards. Our intended pharmacy leadership will establish a national MSN CYPC SACT governance group whilst ensuring collaborative working across age specific services.
Mortality and Morbidity review meetings form an established part of the provision of high quality clinical care. These meetings provide an opportunity for clinicians to review and discuss clinical cases, supporting children and young people's cancer services to identify lessons to be learned and changes that require to be made. The MSN CYPC and Healthcare Improvement Scotland (HIS) regards these reviews as an essential element of clinical governance and a key component of continued service improvement and shared learning.
Furthermore, the MSN CYPC welcomes the Queen Elizabeth University Hospital / NHS Greater Glasgow and Clyde Oversight Board Final Report (Scottish Government, 2021) led by Professor Mike Stevens which investigated 118 episodes of serious bacterial infection in children and young people who received treatment at the Royal Hospital for Children. The shared learning from this report has informed the current and future format of our revised national Clinical Governance and Assurance Group. This group is responsible for setting the national clinical governance priorities based on learning and feedback as well as providing a forum where members can inform, share and learn from each other regarding areas of good practice, local improvements and changes to practice. The group forms part of the wider NHS Scotland Health Board's local clinical governance mechanisms which are responsible locally for ensuring there are effective clinical governance arrangements in place.
The MSN CYPC will review the role and remit of the group, ensuring senior clinical representation from across all Health Boards. The group will take ownership of reviewing local adverse events and activities to inform planning for each Mortality and Morbidity day to ensure national dissemination of learning. A sub group will specifically concentrate on SACT governance, led by the MSN CYPC Lead Pharmacist, across the children's cancer care units, including shared care centres, on a 'once for Scotland' basis with wider benefits to TYA patients being treated within adult centres.
18. Funding provided for the appointment of a substantive Lead Pharmacist within the MSN CYPC to lead national CEPAS and SACT programmes of work
19. Establish a 'Once for Scotland' paediatric SACT governance process to enable efficient and effective MDT working and support a future national paediatric CEPAS
20. Develop a national business case to determine the allocation required to ensure successful delivery of a paediatric CEPAS across NHS Scotland
21. Participation in the national procurement and tendering process for CEPAS, preparing for the future implementation of a paediatric CEPAS across NHS Scotland
22. Continued investment in annual national mortality and morbidity meetings to ensure learning from adverse events
Ambition 5 – Continuing Care when Treatment Completes
Objective: Providing equitable aftercare including health surveillance, psychosocial support, identification of psychological and neuropsychological needs, health education and transition services
Today over 80% of children and young people with a cancer diagnosis will enter into children and young people's Aftercare services following which they are transitioned into teenage and young adult services or Primary Care. There is a wealth of evidence which highlights the multifaceted challenges which young people and their families face following treatment.
To deliver a comprehensive and equitable service for this patient group we require an appropriately trained workforce who, through co-ordinating with the wider MDT, can provide a comprehensive aftercare service, linked with education, to support the detection and treatment of late effects, offering health surveillance advice alongside psychosocial support and health education.
Recent focus groups have provided insight into the many and diverse needs of these survivors. They reported a lack of:
- education and awareness of the risks of late effects, particularly fertility issues
- understanding of the needs and benefits for long term follow up
- peer support and access to psychosocial support
In 2021 the MSN CYPC held a 'late effects of cancer treatment' workshop involving healthcare specialists and patients. This highlighted insufficient / inadequate advice regarding nutrition, physical exercise, and support with readjustment into society, school, university and the workplace. Children and young people can experience both psychological and neuropsychological difficulties long after treatment completes, with some difficulties not manifesting until several years later.
Due to growing numbers of cancer survivors, there is a considerable body of research highlighting that survivors of childhood cancer are at increased risk of anxiety, post-traumatic stress symptoms, internalising behaviours and lowered self-esteem. In addition, to the NICE Cancer Quality Guideline (2005) which specifies continuing access to psychology throughout aftercare, 'The National Cancer Survivorship Initiative' in England has made a number of recommendations which emphasise the importance of holistic needs assessments and access to psychological support throughout aftercare (Jenkins et al, 2013).
In Scotland, guidance for aftercare emphasises the importance of the need for regular review and assessment of psychological function, educational achievement and overall adjustment, for all survivors of childhood cancer (Healthcare Improvement Scotland, 2014).
The MSN CYPC believes that for Aftercare services to meet these concerns, to develop, be sustainable and equitable across Scotland, a MDT approach is required alongside increased aftercare nurse specialist time. A MDT approach is recognised as essential in the treatment phase and should continue into, at least, their early follow up phase; if not into longer term follow up. Ideally children and young people should have access to specialist psychology and neuro-rehabilitation for as long as necessary. This team would include the aftercare clinical nurse specialists as well as funding for wellbeing practitioners, AHPs and psychologists with specialist knowledge in children and young people's cancer in each Principal Treatment Centre, thus ensuring an equitable service. By preference, this would also include access to those with specific expertise in neuro-rehabilitation (e.g. neuro-oncologists, AHPs, psychologists, neuropsychologists, aftercare).
In this way, the MSN CYPC proposes an Aftercare model where AHPs and psychologists can follow the child or young person throughout their cancer journey, supporting them in their transition to adult services, preventing the child or young person having to re-tell their story multiple times; helping them to reach their full potential. AHPs and psychologists are ideally placed to help meet their needs at this key transition phase.
The model, as it stands offers 1.6 whole time equivalent (WTE) nurses to meet the need of Scotland's entire paediatric aftercare services. This is split 0.8WTE between NHS Lothian and NHS Greater Glasgow and Clyde. There is no funding for AHPs for aftercare and limited term psychology services.
No dedicated funding for AHPs for aftercare results in a direct referral to community services as soon as they finish treatment; often whilst still in the acute recovery phase. These patients are seen by individuals who are specialist in their field, but often with no knowledge or experience of working with a child or young person who has had cancer treatment.
In reality many children and young people do not access local community based support services and local services are not equipped with the specialist knowledge and experience of cancer late effects to meet the needs of this population. Specialist cancer AHPs are able to pick up, predict and pro-actively treat future challenges; improving outcomes and decreasing the future burden on adult services within the NHS. However there is an identified need to develop appropriate pathways to access AHP and psychology services, signposting to ensure families, children and young people are aware of, and know how to, obtain support and information for physical activity, nutrition, psychological and neuropsychological difficulties.
The value of this continuity of care is evident in the work of the Lothian paediatric neuro-oncology nurse specialist who is able to follow the neuro-oncology cohort through treatment and beyond, working alongside the aftercare nurse specialist enabling patients to attain their best rehabilitation. NHS Greater Glasgow and Clyde hopes to welcome an equivalent post in the near future.
TYAs who have completed their cancer treatment are managed and followed up within adult services. Some will have transitioned from paediatric services and others will have had all their treatment within the adult sector. A national model for this service does not currently exist and needs to be developed to ensure all people who have completed their cancer treatment have the support and care they require. This will ensure an equitable and sustainable provision across Scotland which meets the requirements of TYAs.
Delivery of this service will involve dedicated posts to allow both direct clinical contact and outreach support for staff and young people, and the development of protocols. This service model will be aligned with the MSN CYPC National Transition Framework to allow seamless care. Every TYA cancer survivor should have access to a TYA Aftercare Nurse Specialist who will act as a key worker in adult cancer services. The Aftercare Nurse Specialist will oversee and co-ordinate aftercare / late effects services; personalising the cancer pathway for individual patients to meet the complex information and support needs of patients and their carers and referring on to other services as needs are identified.
Furthermore, our previous cancer strategy recommended the development of a national, integrated, risk stratified approach to cancer follow up. The Pan European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare EU) has achieved this via an International Guideline Harmonisation Group (IGHG).
The IGHG have reviewed and harmonised the recommendations for follow up by the Children's Cancer and Leukaemia Group, Children's Oncology Group, Dutch Childhood Oncology Group and the Scottish Intercollegiate Guidelines Network (SIGN) Guideline Long Term Follow Up; creating 24 evidence based guideline panels, 8 of which are ready for publication. We hope to adopt these guidelines rather than repeating this work.
The IGHG has evidenced the reality that cure is not enough for the 1 in 1000 European citizens who are survivors (van Kalsbeek et al, 2021). This translates into more than 7000 children and young people in Scotland as survivors of cancer, of whom around 6000 were diagnosed more than 5 years ago (Scottish Government, 2012b). Two thirds will have at least one physical or psychological problem affecting their health and well-being and around a quarter have a severe or life threatening late complication of therapy. Compared to their peers all survivors face a fivefold increase in their chance of a secondary cancer diagnosis by middle age. For some specific cancers there is a thirtyfold increase in incidence (PanCare EU, 2021). By 2030 it is projected that this population will be in the region of 1 in every 100 of the young adult population.
Long term follow up services must be flexible enough to accommodate the needs of young survivors as they grow older. Improved education of survivors and care providers alongside good communication is imperative to this approach. End of Treatment summaries that the survivor can take with them on their forward journey are essential and are already embedded in the MSN CYPC vision; however there are challenges in ensuring continued compliance.
Therefore it is becoming increasingly apparent that Scotland requires a multidisciplinary workforce with the necessary skills and one that holds the capacity and knowledge of late effects to provide the specialist advice and needs sought by young cancer survivors and their families after treatment.
23. Ensure every survivor has an aftercare nurse specialist / key worker who can act as a conduit to other services. This key worker will have contact with the survivor at key points in their growth and development for example starting school, transition to secondary school and TYA, Primary Care or Adult Services as well as at individual times of need in relation to their cancer aftercare issues
24. Ensure every survivor has access to specialised care including, but not exclusively, Dietetics, Medical, Nursing, Occupational Therapy, Psychology, Neuropsychology, Physiotherapy and Social Work
25. Ensure every survivor has an End of Treatment Summary and have at least one Holistic Needs Assessment completed
26. Develop an AHP cancer aftercare pathway to establish clear routes to referral
27. Establish a Project Board to scope and develop a national aftercare model for children and young people, including 16-25 year olds within adult practice
28. Substantive funding provided by the Scottish Government, directly to Health Boards, for equitable aftercare nurse specialists in the Principal Treatment Centres and within TYA services in adult cancer centres
29. Every survivor should have an individualised transition programme, thus preparing, educating and empowering them to take responsibility for their own health and health promotion / prevention prior to their move to TYA, Primary or Secondary Care
Ambition 6 - Integrated Palliative and End of Life Care Services
Objective: Developing equitable and earlier access to 24/7 integrated specialist palliative care services nationally
Cancer is the most common cause of disease related death in children and young people. In Scotland around 40 children and young people die from cancer each year generally occurring at the end of a prolonged and intense period of treatment aimed at cure or participation in early phase clinical trials. Referral to specialist palliative care is usually later in the disease trajectory even though symptom burden is often complex requiring specialist management with significant emotional, psychological, spiritual and existential suffering experienced by the patient and family. There is a need for ongoing services to provide support not only before and during the end of life phase but also in the time after death.
The MSN CYPC advocates strongly that end of life care should be delivered in the appropriate and preferred location of the patient and family with the vast majority of children and young people choosing the community setting. This often requires co-ordination of highly complex care between interdisciplinary and interagency services to ensure safe delivery of a bespoke management plan. True choice cannot not always be offered throughout Scotland currently as there is significant geographical variability in local service provision and access to 24/7 specialist support. The MSN CYPC is committed to addressing this inequality of access to end of life care by collaboration with key stakeholders to develop a specialist national nursing and medical model which can complement the local services available and includes Paediatric Oncology Outreach Nurse Specialists, Adult Community Hospices, Community Children's Nurses, District Nurses, Primary Care and Children's Hospices Across Scotland (CHAS). The MSN CYPC also recognises the need for ongoing research into the role of specialist paediatric palliative care and medicine for children and young people with cancer and remains passionate about leading and collaborating on studies in this field.
The MSN CYPC Palliative Care group implemented the National Paediatric Anticipatory Care Plan and has developed guidance for prescribing anticipatory medications through the use of 'Just in Case' boxes. These contain standardised medications which are often required to provide safe and effective management for symptoms commonly encountered at the end of life. Specific needs and symptoms are addressed by the development of individualised Symptom Management Plans (SMPs). Multidisciplinary collaboration and communication of Anticipatory Care Plans, SMPs, anticipatory prescribing and recording of ceilings of care discussions between all professionals and agencies involved in end of life care is essential to ensure safe and effective care delivery. Furthermore, the MSN CYPC Palliative Care Group developed a national paediatric MDT to support a clearer definition of patient pathways and provide specialist advice. This has been superseded by weekly / monthly local palliative care MDT meetings, but plans are underway to develop a National Specialist Paediatric Palliative Care Medicine service.
In addition a training programme is being developed to support RCPCH accredited Paediatric Palliative Care Medicine subspecialty training in Scotland. The educational component of the monthly MSN CYPC MDT was extremely well received; it has expanded and developed into a highly successful monthly educational platform in collaboration with the Project ECHO (Extension of Community Healthcare Outcomes) based in CHAS. This Paediatric Palliative Medicine Education Network now has up to 100 attendees from across the UK and Europe with national and international speakers delivering educational sessions.
Teenagers and young adults with cancer represent a unique group; their palliative care needs are often under reported and under recognised (Murray, Pettitt and Tomas, 2020). Access to specialist palliative care services for this population is variable across the UK, as they fall between paediatric and adult palliative care services. There is growing recognition of the need for specific palliative care services and for clear pathways, to ensure equitable access to appropriately trained multidisciplinary professionals (Ngwenya et al, 2017; Kenten et al, 2019). As well as nursing and medical professions, this should include AHPs and psychology. To inform the development of palliative care for this population a national audit, measuring care against the objectives of the Strategic Framework for Palliative care and Healthcare Improvement Scotland indictors, will be conducted. The work proposed would support the growing evidence base and provide a unique insight into the population in Scotland.
It should be noted that there are currently no paediatric palliative care pharmacists within NHS Scotland. Whilst palliative care services are not specific to children and young people with cancer, the MSN CYPC supports this as a vital resource, being able to improve safety and the quality of services being provided, particularly during end of life care across our children's cancer centres.
30. Develop equitable 24/7 access to specialist palliative care nationally thus facilitating choice regarding preferred place of care at end of life. This will be undertaken in collaboration with the Paediatric End of Life Care Network (PELiCaN ) and third sector organisations
31. Provide high quality symptom management achieved through anticipatory prescribing using Just in Case boxes and the development of personalised symptom management plans communicated and delivered through local and national teams
32. Undertake a national audit to inform the national strategic service development for the provision of end of life care to TYAs and their families
33. Provide Paediatric Palliative Care educational opportunities through ongoing collaboration between the Paediatric Palliative Medicine Education Network and Project ECHO team
34. Promote the NHS Inform Directory of Services, working with NHS 24 to ensure the content reflects the available children and young people's palliative cancer care services
35. Provide equitable access to pharmacy services for palliative care patients
Ambition 7 – Collaborative, Compassionate and Inclusive Leadership
Objective: Strong leadership with the capacity and capability to drive innovation and the delivery of high quality, sustainable and responsive services
Effective leadership is essential to promote the aims of the MSN CYPC to enable and sustain service improvement. Leadership should be inclusive and collaborative if it is to effectively influence, in particular where a change to new and existing services may be required. Such leadership is required at all levels of our children and young people's cancer services.
Effective staff development is vital to meeting future goals and ambitions. The MSN CYPC will investment in the people who deliver services through enhanced workforce development and effective leadership. We will provide leadership development opportunities to support continuing professional development and facilitate future succession planning for staff working within our services. We will initiate a new leadership development network which will provide a platform for staff to discuss and learn from emerging topics such as advanced practice developments. Through this we aim to deliver our ambitions and objectives. There will be national specific multidisciplinary workstreams to support leadership and ensure a Scotland wide contribution to innovation, with Quality Improvement at the core, supported by an Improvement Advisor. To further support this model, the MSN CYPC will ensure its leadership operates in a co-ordinated manner, working collaboratively across existing professional Health Board structures (Appendix 3).
Furthermore the MSN CYPC is aware of the significant improvements made within TYA services following the introduction of the MSN CYPC TYA Lead Nurse position, delivered in partnership with Teenage Cancer Trust. This role, in partnership with the TYA Clinical Lead, has supported the planning, implementation and improvement of excellence in clinical care for young people and their families across Scotland. The MSN CYPC recognises that by adopting a similar structure for paediatric oncology in the form of a National Clinical Lead and substantive Lead Nurse for paediatrics, we can ensure the continued clinical development across all age ranges. These roles will work alongside the TYA leads and in partnership with our new leadership roles for AHPs and Pharmacy.
36. Ongoing organisational development input to support clinical and professional leadership development to MSN CYPC via current hosting arrangements
37. Scottish Government funding provided to the MSN CYPC for the appointment of a National Clinical Lead and substantive Lead Nurse for paediatrics
38. Scottish Government funding provided to the MSN CYPC for the fixed term appointment (23 months) of a national Improvement Advisor to support a quality improvement approach to the initial delivery of national workstreams
Ambition 8 – Education, Training and Staff Support
Objective: Creating a learning culture and opportunities for greater inter-professional and integrated education
The MSN CYPC requires an appropriately skilled and staffed workforce throughout the country to deliver a high quality integrated service and to achieve the best possible outcomes for patients. A skilled workforce requires education, training and support. These skills should be shared across Scotland, in particular where staff are relatively few in number; to ensure there is no inequity of access for patients. In addition, skills should be shared in the form of sub-speciality education and training.
It is recognised that the COVID-19 pandemic has dramatically changed our approach to national working, with a move to online platforms and virtual teams. A historical challenge within the MSN CYPC has been the geographical separation of patients and clinical teams. New technology provides the opportunity for more regular collaboration between regions, enabling specialist team members to offer input into the care of patient wherever they are treated.
In order to ensure the most effective workforce, the MSN CYPC places education and development at its heart. Annual meetings such as our Educational Development and Morbidity and Mortality days are very well received by our staff as these bring everyone together and provide an opportunity for learning, sharing best practice and improving care. Reviews of patient care reflect the complex pathways through which a patients progress from time of first symptom to definitive treatment. There is risk for potential delay at many different steps either within primary or secondary care. The MSN CYPC seeks to reduce the potential delays leading to more timely diagnosis with the aim of improving outcomes.
We recognise that in order to continue to build upon the current available knowledge of children and young people's cancer across the wider health service, we require to build and foster closer working relationships with our colleagues in academia and primary care. In order to do so, the MSN CYPC will work with our academic partners to influence the current health curriculums to support a broader clinical exposure to our services and bridge the information gap.
The MSN CYPC values the mental health and wellbeing of all staff working within paediatric and TYA oncology services, recognising that enhanced staff wellbeing is not only fundamental to its duty of care to staff, but also central to the delivery of exceptional care, patient experience and improved outcomes for children, young people and their families. The impact of COVID-19 on staff wellbeing in oncology settings is well documented, with health care professionals reporting higher levels of psychological distress and stress (British Psychological Society, 2020). Health Boards across Scotland have been responsive to this need and instrumental in delivering a number of staff wellbeing initiatives examples of which include, but are not limited to, staff wellbeing hubs, the delivery of Psychological First Aid and the inclusion of designated psychology posts within Occupational Health departments.
However, the MSN CYPC recognises that the wellbeing needs of staff existed prior to COVID-19 and therefore requires long term attention and commitment. Staff working in oncology settings frequently report symptoms characteristic of burnout, compassion fatigue and moral injury. In 2013 a survey of multidisciplinary staff working in each of the 19 UK Principal Treatment Centres highlighted three key findings:
1. Differences between Principal Treatment Centres in the range of staff support and wellbeing practices offered
2. Differences among professional groups in the types of staff support and wellbeing practices available and
3. One-off as opposed to ongoing support interventions being more readily available
Alongside the measures implemented within Health Boards, the MSN CYPC acknowledges the need for a range of staff support and wellbeing practices to be available and embedded within oncology services, while recognising that 'one size does not fit all'.
The MSN CYPC is committed to undertaking a scoping exercise with a view to better understand the wellbeing needs and preferences of all staff working within paediatric and TYA oncology services. This will include the identification of existing wellbeing practices and the extent to which these are embedded within routine practice as well as highlighting gaps in current provision. The MSN CYPC recognises the importance of delivering and evaluating a range of evidence based wellbeing practices such as Values Based Reflective Practice (VBRP), psychological support following significant / distressing events and opportunities for informal supervision to ensure a high standard of delivery across all services.
Furthermore, the MSN CYPC also recognises the importance of raising the profile of children and young people's cancer. This is particularly important in supporting medical trainees across NHS Scotland to enhance their learning and development in understanding children and young people with haematological and oncological conditions. We currently support education sessions led and facilitated by clinical colleagues which are recorded and shared via our YouTube channel. We will continue to utilise social media and other platforms to provide education and training opportunities with the aim of increasing knowledge and understanding of this speciality.
39. Developing further education and learning opportunities to improve referrals and ensure timely diagnosis, including implementation of national programmes such as Headsmart
40. Undertake a national staff wellbeing scoping exercise to explore opportunities to improve the psychological and emotional wellbeing of oncology staff
Ambition 9 – Specialist and Sustainable Workforce
Objective: Continuing to develop and support a clear multidisciplinary approach to working that is based on the needs of the population
Maintaining an appropriately skilled and available workforce is critical to delivering a quality integrated service and achieving the best possible outcomes for patients. Networked care by multiple teams across the country with different skill-sets, delivering different aspects of patient care requires collaboration, excellent communication and adequate training and education opportunities to ensure staff are trained to deliver the best treatments.
Specialist children's services are often accessed by relatively small numbers of patients, but require highly specialised and scarce clinical skills. The challenge of delivering high quality, accessible and sustainable services to children and young people in the context of the size and distribution of the Scottish population was recognised in the National Framework for Service Change 'Building a Health Service Fit for the Future' (Scottish Government, 2005). Historically many of these services have evolved in their different regions with a measure of independence which has resulted in variable patterns of service, inefficient use of scarce resources and growing problems of sustainability particularly in regard to workforce issues and the requirements of clinical governance.
By way of response, 'Better Health, Better Care – National Delivery Plan for Children and Young People's Specialist Services in Scotland' (Scottish Government, 2009b) highlighted the need for much more robust arrangements for the planning, commissioning and delivery of specialist paediatric services within Scotland. The National Delivery Plan ensured substantial investment was directed to resource the children's cancer Principal Treatment Centres and to effectively support local shared care services in other centres to reflect local demand and service configuration whilst maximising appropriate opportunities for local care. However it remains clear that the balance of investment within paediatric services should be kept under review as rising demands on health and social care services, as well changes in patient needs, emerge over time.
Although the National Delivery Plan ensured substantial investment in the children's cancer Principal Treatment Centres, there remains inequity within the AHP workforce. Not all Principal Treatment Centres and TYA units have paediatric trained AHPs with dedicated time; either in the cancer services or in the shared care centres. To allow equitable care for all our children and young people in Scotland these gaps need to be addressed. This will also allow better provision of care nearer to home. With the increasing number of children and young people surviving their cancer treatment there is an added increase in demand for access to AHPs to support in the health and wellbeing of these individuals.
This need was highlighted by children and young people in our stakeholder workshops undertaken in 2020, as aforementioned. We have already highlighted the lack of dedicated time AHP time to support the Aftercare services with patients being seen by the acute team or by AHPs not trained in cancer services. In order to support the children and young people after treatment, pathways need to be developed allowing access to AHPs with dedicated time within their roles and with adequate training to provide this service.
In comparison, within pharmacy, ensuring the safe and efficient delivery of SACT and associated supportive treatment to children and young people with cancer is complex. Pharmacy services are provided via clinical pharmacists and technicians within inpatient, outpatient and day care services. They also require support from other pharmacy services including dispensing, aseptic dispensing, clinical trials, CEPAS, medicines management, stores and distribution, medicines information and homecare. The constitution of services and duties will vary between Health Boards. A mapping and benchmarking exercise is required to identify workforce capacity and gaps in service provision. Furthermore, as stated within Ambition 4, implementation and maintenance of a national CEPAS for children will require significant resource alongside a robust business plan to ensure successful delivery.
The MSN CYPC also recognises the important role of nursing in the successful delivery of this strategy. Using their expertise and skills to offer the best care and support to their patients across diverse settings and specialties, nurses are often the most frequent line of contact with people of all backgrounds and experiences. Accounting for 42% of the workforce (NES, 2021), nurses represent the largest staff group in NHS Scotland.
The MSN CYPC recognises the cornerstone for the profession over the coming years is the Nursing 2030 Vision (Scottish Government, 2017). The vision focuses on preparing a nursing workforce that will be ready and able to meet people's needs moving towards 2030. It reflects the national policy drivers in Scotland, which includes putting people at the centre of health and social care services, delivering the right care, in the right place, at the right time and ensuring quality is at the heart of service delivery.
Fundamental to achieving the 2030 vision of delivering a nurse-led compassionate, person centred and rights based service, where nurses are prepared for increasingly technological environments, is the recognition that there must be strong foundations for future nurses which reflect their new responsibilities. Values reflected in the 2030 vision, shared by the MSN CYPC, are the need for nurses to be educated and prepared in the right numbers to meet population needs and take on transformed roles; both through initial academic training and on-going professional and education support.
Work on this has already started, through the Transforming Roles programme, to review the clinical nurse specialist / advanced clinical nurse specialist role. This work aims to build national consistency, through the development of a clear education and career pathway, to maximise the contribution of the clinical nurse specialist to meet the future needs of Scotland's health care system.
The MSN CYPC further recognises that paediatric haematology oncology nursing is a highly specialist area with only three dedicated wards in Scotland; therefore the pool of experienced nurses in this field is limited. Any movement within the nursing workforce for example, to a different speciality or through promotion, most frequently entails replacement by nurses new to the field. This causes consistent pressures on the nurses responsible for education; providing up skilling for new nurses to ensure safe staffing numbers on every shift to ensure the specialised supportive care this patient group requires. There must be adequate SACT trained nurses on every shift in each Principal Treatment Centre and Shared Care setting, in order for this to be delivered safely. This is challenging in non-dedicated speciality wards and Shared Care settings where SACT trained nurses are fewer in number and where delivering SACT may be a small part of the nurses overall role. In this setting, retaining highly skilled staff is even more challenging. This is also reflected within the medical workforce and there is a need for highly trained medical staff in both Principal Treatment Centres and Shared Care settings. Close working is required between centres to ensure all substantive posts are occupied by highly trained doctors or that there is a training plan in place for those in departments that are developing formal shared care roles.
As this strategy is implemented, the MSN CYPC will continue to recognise the future influence the Nursing 2030 Vision and Transforming Nursing programme will have on both paediatric and TYA cancer nursing.
In relation to paediatric psychology, these services typically see children, young people and their families from the age of 0-18 years. A diagnosis of cancer is typically a period of great shock and worry. Along with treatment, it provides a sense of vulnerability, fear and sadness for patients and their families; usually causing a great deal of distress. A diagnosis of cancer meets the criteria for a traumatic stressor because it involves 'actual or threatened death or serious injury, or a threat to the physical integrity of self or others'. Studies have shown that around 33-40% of patients report clinically significant levels of distress at diagnosis (Zabora et al, 2001) which can have a negative impact on satisfaction with care (Von Essen et al, 2002), health related quality of life (Shim, Kelly & Hornik, 2007) and self management after treatment (Santacroce & Lee, 2006). In addition, distress can worsen disability, prolong hospital stays, increase medication non-adherence and reduce survival rates (Kennard et al, 2004).
In the United States, the Children's Oncology Group looked at rates of anxiety, depression and behavioural change after a diagnosis of Acute Lymphoblastic Leukaemia (ALL) in ages 2-9 years. The findings suggest that depression and anxiety scores at one month after diagnosis significantly predicted persistence of symptoms throughout the first year of therapy for children. These results highlight the importance of early identification of distressed children and early intervention to avoid long term issues (Myers et al, 2014).
Perhaps unsurprisingly, parents of children with paediatric cancer report high levels of psychological stress such as post-traumatic stress symptoms (PTSS), anxiety and depression. Although many of these families adjust well over time a significant number of them report long term psychological difficulties, with subgroups of parents who maintain a high level of distress throughout their child's illness.
Children of parents who had less support, either as a result of relationship status or lack of wider social supports, were typically found to have more difficulties with their mood (Myers et al, 2014). However research has demonstrated that psychological interventions work well with parents and that they, in turn, can pass on this education to their children (Cernvall et al, 2015).
Scottish Government guidelines clearly recommend that psychological services should be considered as an integral part of children's medical health care (Scottish Government, 2009b). It is increasingly recognised that psychological factors have an impact on the outcome and quality (actual and perceived) of health care. There is also a growing evidence base to support the clinical effectiveness of psychological interventions, such as Cognitive Behavioural Therapy (CBT), Motivational Interviewing and Family Therapy for a number of medical conditions (British Psychological Society, 2015; NES, 2015).
The MSN CYPC previously conducted a survey of paediatric clinical psychology and neuropsychology provision to paediatric Principal Treatment Centres across the UK in August 2016 which identified a significant discrepancy between the psychological provision to children in Scotland versus the rest of the UK and a discrepancy in provision within Scottish centres.
Therefore the MSN CYPC supports the requirement for all children and young people aged 0-18 years in paediatric services to have access to the expertise of AHPs, nurses, psychologists and pharmacists who can provide both direct and indirect care to children, young people, their families and the professional network.
As the MSN CYPC continues to embed and progress our earlier workforce modelling, and with the implementation of this national strategy, we will become better informed about any workforce challenges, gaps and inefficiencies within our services and how these should be addressed. We will undertake a national workforce scoping exercise to develop a national map of the current profile of our services to support individual Health Boards in their own local workforce planning. Furthermore, the MSN CYPC will undertake a conceptualisation and cost analysis of the clinical workforce required for the future.
The MSN CYPC will also undertake a workforce review to facilitate future service delivery and outcomes that align with the strategic direction from this strategy. A workforce realignment will afford the MSN CYPC the opportunity to enhance national working whilst ensuring we continue to deliver a shared governance model.
41. National workforce mapping exercise to be undertaken across NHS Scotland for children and young people's cancer services to support local Health Board workforce planning processes
42. Future workforce cost analysis to be undertaken to inform the Scottish Government of future associated costs
43. Undertake a wider MSN CYPC workforce review to ensure the appropriate staffing model to deliver on the strategic actions of the cancer strategy
Teenagers and Young Adults Workforce
A key ambition for the MSN CYPC has been to ensure that any future strategy developed for TYAs with cancer is consistent with approaches adopted in other UK countries (Scottish Government, 2012b). In line with this, pan-Scotland TYA cancer specific services have been developed in adult cancer practice to meet the complex clinical, psychological, and social issues experienced by young cancer patients.
The provision of specialist age-appropriate cancer services for TYAs in adult cancer services is delivered through the development of a national TYA cancer network model of care (Appendix 4). This encompasses TYA cancer hubs established across the five adult regional cancer centres and nominated geographical regions. These collaborate to deliver personalised age-appropriate care and create smoother, more effective patient pathways. Each hub is supported by clinical leadership and a specialist workforce, knowledgeable of the biomedical and psychosocial issues specific to TYAs with cancer, who advocate locally and nationally for their interests.
Whilst the development of the national TYA cancer model of care has been successful, there remain areas for improvement. A workforce census in March 2021 (Appendix 5) demonstrated gaps in specialist TYA Clinical Psychology provision in three TYA hubs, a gap in AHP provision in four hubs and no dedicated provision for aftercare support available to TYA in any of the five TYA hubs in adult care.
Scottish Government investment is fundamental to the development of age-appropriate TYA cancer services and the implementation of a national model of care. Current investment has included non-recurring funding from the Adult Cancer Strategy, made available to specifically address the identified disparities between paediatric cancer provision and provision for TYA in adult cancer services. This facilitated a number of temporary clinical appointments which support the delivery of specialist and age appropriate services for TYA within adult cancer practice. Further substantive funding is required to sustain these clinical posts and expand the TYA workforce. This is necessary to progress the TYA model of care and deliver the actions of this strategy.
Teenage Cancer Trust has made significant investment in the TYA model in Scotland, committing substantive funding for TYA Clinical Nurse Specialists and Youth Support posts; this includes youth support activities / events and maintenance of the four TCT units. The MSN CYPC values its close partnership working with TCT and will continue to work closely with the charity to deliver a high quality service within NHS Scotland for TYAs. The benefits of continued investment in TYA cancer services will be experienced by TYA, their families, and carers through the delivery of a national service model which drives equity and consistency of care across patient pathways; is designed to meet the unique needs of this patient group (Teenage Cancer Trust, 2016), addresses priorities TYAs have identified and is delivered by a workforce who are skilled in the care and support of this age group (Aldiss, Fern and Gibson, 2018).
The psychological impact of cancer throughout the cancer pathway is well documented (WoSCAN, 2017) along with widespread agreement that the psychological needs of TYAs with cancer are distinct from both their paediatric and adult counterparts (National Institute for Health and Care Excellence, 2005; Barnett et al, 2016). TYAs experience significant and rapid social, cognitive, emotional and physical change. This can increase their vulnerability to experiencing mental health difficulties; three quarters of lifetime psychiatric diagnoses will have their onset prior to reaching the age of 24 (Mental Health Foundation, 2015).
The onset of cancer during this vulnerable period and accompanying psychosocial sequelae will often interrupt 'normal' development, increasing the likelihood of psychological morbidity. For many TYAs this represents a 'dual crisis' which can have long-lasting consequences (Teenage Cancer Trust, 2016). If left untreated this can lead to poor treatment adherence and potentially prognosis, reduced quality of life and a legacy of mental ill-health (Zebrack et al, 2010). TYAs consistently report the importance of their psychological well-being and highlight difficulties accessing specialist care (Aldiss et al, 2018; Young Lives vs Cancer, 2017). Recent evidence also indicates that the COVID-19 pandemic has had a significantly adverse impact on the mental health of many young people (Young Minds, 2021); further increasing the need for access to specialist and evidence-based psychological assessment and intervention.
NICE recognises the requirement of and added value of specialist, age-appropriate Clinical Psychology during all stages of the cancer pathway (NICE, 2014). NICE recommends that "all young people with cancer have their psychological needs assessed at key points during their cancer pathway… and have access to expert psychological support with clear routes of referral in Principal Treatment Centres and other treatment settings". WoSCAN (2017) also emphasises the requirement for equitable and timely access to specialist psychological care at key points in the cancer pathway.
In addition to providing direct support to young people and families, NICE (2004) recognises the vital role of Clinical Psychologists in enhancing psychologically informed multi-disciplinary care by offering training, support and consultation to other team members. This is particularly important in relation to treatment decisions, fertility preservation, end of treatment, and palliative care decisions. Clinical psychologists should also have a key role in providing staff support; for example, evidence based psychological debriefs following significant events and attendance at key meetings as part of routine practice. Consequently, the MSN CYPC supports the continued integration and expansion of specialist TYA Clinical Psychologists within the TYA MDT.
The MSN CYPC supports the requirement for all TYAs in adult cancer services to have access to the expertise of specialist TYA Clinical Psychologists who can provide both direct and indirect care to TYAs, their families, and the professional network. The MSN CYPC will continue to provide long term investment, provided by the Scottish Government and directly aligned to Health Boards, which includes the substantive funding of existing TYA Clinical Psychology posts.
The MSN CYPC workforce review will also provide an opportunity for recommendations to be made to determine future service provision and reduce inequity of access to specialist psychological care.
Specialist TYA cancer care in the adult cancer setting is delivered by small number of highly trained staff who should be experienced, skilled and have a high level of competence in the field (Teenage Cancer Trust, 2016). To achieve expert level of practice in the field, all TYA specialist staff working in adult cancer services are expected to undertake TYA cancer focused education, such as formally accredited opportunities, with an expectation of TYA focused continuing professional development during an appraisal cycle.
The TYA cancer competency framework for nurses, which is a practical tool to assist nurses from Band 5 to Band 8 in developing their practice, should be used for self-assessment and as part of a CPD process for nurses who work in the TYA cancer field. We want to ensure that TYA specialist care continues to grow and develop by promoting education for all professional groups, particularly as care for young people with cancer can be delivered in a variety of health care settings and by a number of health professional groups who are non-specialists in the field. Training packages specific to TYA cancer care for non-specialist staff are not readily available or accessible.
44. Substantive funding provided by the Scottish Government, directly to Health Boards, for existing TYA clinical posts
45. Substantive funding provided by the Scottish Government, directly to Health Boards, to expand the TYA workforce as per workforce analysis
46. Substantive funding provided by the Scottish Government, directly to Health Boards, for existing specialist TYA Clinical Psychologists
47. Substantive funding to be provided by the Scottish Government, directly to Health Boards, for increasing specialist TYA Clinical Psychology services to ensure equity of access across all TYA cancer hubs
48. Mapping exercise to be undertaken to determine the educational requirements of TYA specialist staff
49. Partnership working to be undertaken with NES to develop TYA cancer specific information for non-specialist staff
Ambition 10 – Age Appropriate Services and Effective Transitions
Objective: Ensuring all young people aged between 16-25 years old have equitable access to comprehensive and personalised age appropriate care
The national TYA MDT is an essential component in providing high quality care to TYAs with cancer. It has a key role in working with the cancer site-specific and other teams involved in the patient's care to ensure a holistic and coordinated approach across pathways and throughout their care. Discussion of a young person's care at the MDT will ensure consideration of options for fertility preservation, recommendation of clinical trials, an assessment of psychosocial needs, as well as assigning a Key Worker and single point of contact. The MSN CYPC is committed to ensuring that all TYAs with cancer benefit from having their care discussed at the national TYA MDT.
The MSN CYPC wants every TYA to have an excellent experience of care; however there are currently no consistent ways of capturing patient experience for this age group. It is known that poorer experiences of care compared to those of adults have been consistently reported in the English National Cancer Patient Experience Survey (Furness et al, 2017). Given that 16-25 year olds are not included in a bespoke survey for children and young adults in Scotland, it would inform TYA patient experience if the Scottish Cancer Patient Experience Survey (SCPES) could be broken down into the 16–25 years age group. Development of an age-appropriate patient experience survey for 16–25 year olds would also identify priority areas for improvement in TYA cancer services at a national level.
The SCPES has highlighted the need for more information to be available in some areas for patients. Although specific information from the survey was not available about the information needs of the 16–25 years age group, we do know that providing age-appropriate information is one of the quality criteria for young people's services (Department of Health England, 2011). Existing cancer information is often tailored to older adults or children's cancers and does not include the issues relevant and important to young people (Lea et al, 2018; Lea et al, 2019). To ensure young people receive the information they need to make health care decisions we will work with young people in adult cancer services to develop age-appropriate information about what standards of care they can expect in NHS Scotland.
To support the assessment, care planning and delivery of person-centred care for young people, the Teenage Cancer Trust digital portal and application, the 'IAM' (Integrated Assessment Mapping) will be implemented in Scotland. The IAM enables partnership working by providing a structure to support professionals and young people in holistically assessing needs for information and support at any point in the pathway. To support the IAMs implementation, the MSN CYPC will review and redevelop the TYA MDT Co-ordinator role.
The opportunity to spend time with others who are on or have completed treatment helps to facilitate the adjustment and continued personal development of young cancer patients who may be unable to access their normal social environments (Matsui et al, 2020). The MSN CYPC National Youth Advisory Forum identified the need for the development of a peer to peer support network. Although many of the members had met other young people with cancer they could see a gap for a formalised support system; where the person being "buddied" could ask questions they may not feel comfortable asking in an informal peer relationship. Through a process of co-design and collaboration between the forum and health professionals, a national framework for delivering peer support has been developed. The "Buddy System" will enable TYAs, wherever they live, to meet and benefit from peer support. This requires implementation across Scotland.
Although new models and pathways of TYA cancer care have been widely implemented across the UK there has been limited research to evidence these service models. The recent national evaluation of TYA services across England demonstrated that young people receiving all their care in a specialist TYA service (Principal Treatment Centre) experienced faster improvements in quality of life over three years compared with those who had no care in a specialist centre. In addition those in the specialist centre were more likely to have documentation of fertility discussion, molecular diagnostics where relevant and access to the wider appropriate team (Taylor et al, 2020). Questions remain as how to configure services and pathways for TYAs with cancer. We will contribute to the international evidence base and examine outcomes associated with TYA cancer specialist services in Scotland by participating in the UK wide study BRIGHTLIGHT 2021. The primary outcome measure is quality of life, secondary outcomes include survival and experiences of cancer care for young people.
TYAs with cancer have to navigate complex and varied patient pathways. Their sometimes transient lifestyle, influenced by educational, family, and social factors, can mean that TYAs move between a number of different care settings and across geographical locations. The purpose of the TYA element of the MSN CYPC is to navigate these challenges; ensuring optimal, effective and efficient TYA cancer services which deliver excellent patient experience. This will be achieved through the effective coordination of patient pathways between providers and within the network's geographical area, and sometimes beyond.
We want to ensure that all patient pathways are considered and aim to develop processes and services which meet the needs of this patient group. The MSN CYPC will also seek to address identified disparities in the TYA group specific to clinical trial recruitment and time and route to diagnosis.
The MSN CYPC recognises that preparing young people for the move from children's health services to adult health services is critical to ensure good health and outcomes for young people (Royal College of Physicians of Edinburgh, 2008; NICE, 2016). Young people are especially challenged by changes in their care and need to be well informed on how this will be provided (London South Bank University and Great Ormond Street Hospital for Children, 2014).
There is also growing recognition that young adults require additional support during a time of transition from TYA to adult healthcare services. Therefore, it is vital that barriers to patient-centred and joined-up care for young adults are removed (Mulder et al, 2016).
To support the multidisciplinary teams who are core to the successful transition of young people from children's cancer services to adult services, and to ensure that young people are central in transition assessment and planning, the MSN CYPC has developed a national framework for transition. The 'Once for Scotland' framework and five outcome focused standards were developed following a review of existing evidence on transition, with the objective of supporting the delivery of high quality transitional care to young people wherever they live in Scotland. We will work with clinicians across Scotland to implement the framework into practice.
TYAs with cancer are reported to have long and complex journeys to cancer diagnosis (Herbert et al, 2018 and Dommett et al, 2019). Presenting symptoms are often multiple, vague and non-specific (Koo et al, 2020). Although specific studies exploring route to diagnosis and time to diagnosis are limited, timely diagnosis is a major concern for young people and their families (Fern et al, 2013). Recent unpublished data also demonstrates that for TYAs longer diagnostic and treatment intervals are associated with a higher risk of impaired quality of life, clinical anxiety and clinical depression six months after diagnosis (Foster et al, TBC).
The inclusion of TYAs into clinical trials is paramount to future advances for TYA survival and quality of life. Although survival for many TYA cancers is high, long term treatment related morbidity is significant with increased risks of secondary cancers, cardiovascular and neurological events (Henson et al, 2016; Bright et al, 2017; Bright et al, 2019). Therefore the MSN CYPC wants to continue to ensure TYAs have the opportunity to enter trials of new and less toxic therapies. The five A's describe a process to maximise opportunities for inclusion in trials:
1. Trials must be Available in the cancer types occurring in TYAs
2. Appropriate eligibility criteria should be applied to allow TYA inclusion
3. Studies should be Accessible to TYAs through their treatment centre and entry facilitated by professionals
4. Both professionals and TYAs need to be Aware of trials which are available and the importance of trial entry
5. The trial design and question must be Applicable to both TYAs and the treatment team (Fern et al, 2014)
Finally, continuing with education and employment during treatment can be challenging for TYAs and is not infrequently disrupted by treatment toxicities and hospitalisation. None the less, TYAs place a high importance in being able to achieve education and employment goals as this quote from a member of the Youth Advisory Forum illustrates:
"One service I feel is missing from this is careers / education advice. When I finished treatment, it was challenging to define and consider my options to restart my "normal" life"
Returning to education and employment was also identified as a top ten research priority for TYAs contributing to the James Lind Alliance work (Aldiss et al, 2019). However resource to enable TYAs to achieve employment and educational goals are not consistently or comprehensively supported across TYA cancer services in Scotland, and access can be dependent on geographical location. The MSN CYPC recognises the importance of this area to young people and aims to identify what resource is available and where there are gaps. The MSN CYPC will also work with young people to undertake a needs analysis.
50. All TYAs will be referred to the national TYA MDT
51. Data extraction to be undertaken for patients between 16-25 years of age to inform the development of an age appropriate patient experience survey for young people in adult cancer services in partnership with the Scottish Cancer Patient Experience Survey team
52. In partnership with the MSN CYPC Youth Advisory Forum, information will be developed for young people with cancer on what standards of care to expect from NHS Scotland
53. A single TYA specific e-holistic needs assessment (the IAM) will be implemented for use at the national TYA cancer MDT and adopted as the standard approach
54. Redevelopment of the TYA MDT Co-ordinator role to focus on holistic MDT delivery
55. Establish a Project Board to implement a national peer support system for TYAs with cancer
56. Scotland's TYA cancer services will collaborate with the National Institute for Research (NHIR) and the University College London Hospitals (UCLH) Centre for Nurse, Midwife and AHP Research to implement BRIGHTLIGHT 2021
57. Establish a Project Board to support implementation of the national children and young people's cancer transition framework across Scotland
58. Develop and implement individual transition care plans
59. Monitoring the development of the Early Cancer Diagnostic Centres (ECDCs) Programme, linking with it where appropriate for the TYA community
60. Ensure TYAs are included in the national diagnosis audit and diagnosis is not grouped inappropriately i.e. 15-49 years
61. Ensure open trials are available to all TYAs in the TYA Principle Treatment Centres
62. Undertake a needs analysis to identify what resources are available and any gaps in the achievement of employment and educational goals for TYAs
"I am very pleased to see the focus on shared decision making. My daughter and I, together with our Oncologist, have always been at the very heart of shared decision making. Because of this she is living her best teenage life every single day"
MSN CYPC Parent / Carer Group Member
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