Publication - Strategy/plan
Collaborative and Compassionate Cancer Care: cancer strategy for children and young people 2021–2026
This Managed Service Network (MSN) for Children and Young People with cancer (CYPC) strategy celebrates the achievements to date as well as setting out ambitions for the coming 5 years.
Section 6 - Summary of Actions
The following list of actions reflects the order in which they are presented within this strategy, rather than the required priority. The MSN CYPC will produce an annual workplan detailing the actions to be delivered within that specific phase of strategy implementation, liaising closely with Health Boards.
| Action No | Action | Services | Responsible |
|---|---|---|---|
| 1 | Ensure all children and young people have access to tumour banking for precision medicine, to guide current and future treatment | Paediatrics and TYA | NHS Board Medical Directors |
| 2 | Work closely with the Scottish Government to source funding for future allocation to support the Scottish Genetic Laboratory Consortium ten prioritised molecular pathways | Paediatrics and TYA | MSN CYPC |
| 3 | Advocating for and supporting the enrolment of children and young people to the national childhood cancer diagnostic study, up to 18 years old | Paediatrics and TYA | NHS Board Medical Directors |
| 4 | All patients will be discussed at regional and / or national MDTs to ensure access to innovative treatments and appropriate clinical trials | Paediatrics and TYA | NHS Board Medical Directors |
| 5 | All children and young people should be enrolled on a clinical trial when possible | Paediatrics and TYA | NHS Board Medical Directors |
| 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 | Paediatrics and TYA | MSN CYPC |
| 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 | Paediatrics and TYA | MSN CYPC / Public Health Scotland |
| 8 | Implementation of a single national radiotherapy service for children within Scotland | Paediatrics | NHS National Services Scotland |
| 9 | Commissioning of a national metaiodobenzylguanidine (MIBG) paediatric service for Scotland | Paediatrics and TYA | Scottish Government |
| 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 | Paediatrics and TYA | MSN CYPC / Scottish Government / NHS Board AHP Directors |
| 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 | Paediatrics and TYA | NHS Board AHP Directors |
| 12 | Substantive funding and appointment of national AHP Lead within the MSN CYPC to ensure strategic service delivery across Scotland | Paediatrics and TYA | Scottish Government / MSN CYPC |
| 13 | Evaluate the needs of children, young people and their families in relation to current AHP service provision for cancer services | Paediatrics and TYA | MSN CYPC AHP Lead |
| 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 | Paediatrics and TYA | MSN CYPC AHP Lead |
| 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 | Paediatrics and TYA | MSN CYPC AHP Lead |
| 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 | Paediatrics and TYA | Scottish Government / NHS Board Psychology Directors |
| 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 | Paediatrics and TYA | NHS Board AHP, Nurse and Psychology Directors |
| 18 | Funding provided for the appointment of a substantive Lead Pharmacist within the MSN CYPC to lead national CEPAS and SACT programmes of work | Paediatrics and TYA | Scottish Government / MSN CYPC |
| 19 | Establish a 'Once for Scotland' paediatric SACT governance process to enable efficient and effective MDT working and support a future national paediatric CEPAS | Paediatrics | MSN CYPC Lead Pharmacist |
| 20 | Develop a national business case to determine the allocation required to ensure successful delivery of a paediatric CEPAS across NHS Scotland | Paediatrics | MSN CYPC Lead Pharmacist |
| 21 | Participation in the national procurement and tendering process for CEPAS, preparing for the future implementation of a paediatric CEPAS across NHS Scotland | Paediatrics | MSN CYPC |
| 22 | Continued investment in annual national morbidity and mortality meetings to ensure learning from all adverse events | Paediatrics and TYA | MSN CYPC |
| 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 | Paediatrics and TYA | NHS Board Nurse Directors |
| 24 | Ensure every survivor has access to specialised care including, but not exclusively, Dietetics, Medical, Nursing, Occupational Therapy, Psychology, Physiotherapy and Social Work | Paediatrics and TYA | NHS Board AHP, Nurse and Psychology Directors |
| 25 | Ensure every survivor has an End of Treatment Summary and have at least one Holistic Needs Assessment completed | Paediatrics and TYA | NHS Board Medical and Nurse Directors |
| 26 | Develop an AHP cancer aftercare pathway to establish clear routes to referral | Paediatrics and TYA | MSN CYPC AHP Lead |
| 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 | TYA | MSN CYPC Lead Nurses |
| 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 | TYA | Scottish Government / NHS Board Nurse Directors |
| 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 | TYA | MSN CYPC Clinical Leads / MSN CYPC Lead Nurses |
| 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 | Paediatrics and TYA | MSN CYPC Clinical Leads / MSN CYPC Lead Nurses / MSN CYPC AHP Lead |
| 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 | Paediatrics and TYA | MSN CYPC Clinical Leads / MSN CYPC Lead Nurses / MSN CYPC AHP Lead |
| 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 | TYA | MSN CYPC Clinical Leads / MSN CYPC TYA Lead Nurse |
| 33 | Provide Paediatric Palliative Care educational opportunities through ongoing collaboration between the Paediatric Palliative Medicine Education Network and Project ECHO team | Paediatrics | MSN CYPC Clinical Leads / MSN CYPC Lead Nurses / MSN CYPC AHP Lead |
| 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 | Paediatrics and TYA | MSN CYPC Clinical Leads / MSN CYPC Information Officer |
| 35 | Provide equitable access to pharmacy services for palliative care patients | Paediatrics and TYA | NHS Board Directors of Pharmacy / MSN CYPC Lead Pharmacist |
| 36 | Ongoing organisational development input to support clinical and professional leadership development to MSN CYPC via current hosting arrangements | Paediatrics and TYA | MSN CYPC National Network Manager |
| 37 | Scottish Government funding provided to the MSN CYPC for the appointment of a National Clinical Lead and substantive Lead Nurse for paediatrics | Paediatrics | Scottish Government / MSN CYPC |
| 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 | Paediatrics and TYA | Scottish Government / MSN CYPC National Network Manager |
| 39 | Developing further education and learning opportunities to improve referrals and ensure timely diagnosis, including implementation of national programmes such as Headsmart | Paediatrics and TYA | MSN CYPC |
| 40 | Undertake a national staff wellbeing scoping exercise to explore opportunities to improve the psychological and emotional wellbeing of oncology staff | Paediatrics and TYA | MSN CYPC |
| 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 | Paediatrics and TYA | MSN CYPC |
| 42 | Future workforce cost analysis to be undertaken to inform the Scottish Government of future associated costs | Paediatrics and TYA | MSN CYPC |
| 43 | Undertake a wider MSN CYPC workforce review to ensure the appropriate staffing model to deliver on the strategic actions of the cancer strategy | Paediatrics and TYA | Scottish Government / NHS National Services Scotland |
| 44 | Substantive funding provided by the Scottish Government, directly to Health Boards, for existing TYA clinical posts | TYA | Scottish Government |
| 45 | Substantive funding provided by the Scottish Government, directly to Health Boards, to expand the TYA workforce as per workforce analysis | TYA | Scottish Government |
| 46 | Substantive funding provided by the Scottish Government, directly to Health Boards, for existing specialist TYA Clinical Psychologists | TYA | Scottish Government |
| 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 | TYA | Scottish Government |
| 48 | Mapping exercise to be undertaken to determine the educational requirements of TYA specialist staff | TYA | MSN CYPC TYA Clinical Lead, TYA Lead Nurse and AHP Lead |
| 49 | Partnership working to be undertaken with NES to develop TYA cancer specific information for non-specialist staff | TYA | MSN CYPC TYA Clinical Lead, TYA Lead Nurse and AHP Lead |
| 50 | All TYAs will be referred to the national TYA MDT | TYA | NHS Board Medical Directors |
| 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 | TYA | MSN CYPC TYA Lead Nurse / MSN CYPC Holistic MDT Co-ordinator |
| 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 | TYA | MSN CYPC TYA Lead Nurse |
| 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 | TYA | MSN CYPC TYA Clinical Lead / MSN CYPC TYA Lead Nurse |
| 54 | Redevelopment of the TYA MDT Co-ordinator role to focus on holistic MDT delivery | TYA | MSN CYPC National Network Manager |
| 55 | Establish a Project Board to implement a national peer support system for TYAs with cancer | TYA | MSN CYPC TYA Lead Nurse |
| 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 | TYA | MSN CYPC TYA Clinical Lead / MSN CYPC TYA Lead Nurse |
| 57 | Establish a Project Board to support implementation of the national children and young people's cancer transition framework across Scotland | TYA | MSN CYPC TYA Lead Nurse |
| 58 | Develop and implement individual transition care plans | TYA | MSN CYPC TYA Lead Nurse |
| 59 | Monitoring the development of the Early Cancer Diagnostic Centres (ECDCs) Programme, linking with it where appropriate for the TYA community | TYA | MSN CYPC TYA Clinical Lead / MSN CYPC TYA Lead Nurse |
| 60 | Ensure TYAs are included in the national diagnosis audit and diagnosis is not grouped inappropriately i.e. 15-49 years | TYA | MSN CYPC TYA Lead Nurse |
| 61 | Ensure open trials are available to all TYAs in the TYA Principle Treatment Centres | TYA | NHS Board Medical Directors |
| 62 | Undertake a needs analysis to identify what resources are available and any gaps in the achievement of employment and educational goals for TYAs | TYA | MSN CYPC TYA Lead Nurse / MSN CYPC AHP Lead |
Contact
Email: CancerPolicyTeam@gov.scot
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