Cancer strategy 2023-2033: child rights and wellbeing impact assessment

Child Rights and Wellbeing Impact Assessment (CRWIA) for Cancer Strategy for Scotland 2023-2033

Introduction

Background

Cancer remains one of Scotland’s single biggest health challenges, representing the largest burden of disease. The number of deaths from cancer has increased over the last decade, mainly due to the increasing number of cancer cases.

There have been huge changes in the understanding of the disease and how to prevent, diagnose and treat it better. Increasing cancer survival and the ageing population of Scotland mean that the population of survivors is likely to grow substantially in the coming decades, leading to increased demand on the health service.

The current national cancer plan ‘Recovery and Redesign: An Action Plan for Cancer Services’ was published during the first year of the Covid-19 pandemic and set out a number of priorities to pave the way for remobilisation and recovery of cancer services. This plan ends in March 2023 and a new strategy is required to continue with and improve on the services available to all those affected by cancer, which includes people living with cancer and their families and carers, as well as the workforce.

The new strategy will be in place for 10 years and will be underpinned by three consecutive action plans. It will also align with the current cancer strategy for children and young people: Collaborative and Compassionate Cancer Care: cancer strategy for children and young people 2021–2026. This strategy, delivered through the Managed Service Network for children and young people, reflects the distinct needs of children and young people.

Policy Aim

Our 10-year vision is that: “More cancers are prevented, and our compassionate and consistent cancer service provides excellent treatment and support throughout the cancer journey, and improves outcomes and survival for people with cancer”.

The new strategy will provide a common direction to all affected by cancer, defining a clear aim - improve cancer survival and provide excellent, equitably accessible, care - along with a range of priority ambitions to help meet that aim.

The initial three-year period of the strategy will focus on stabilising systems and services, maintaining cancer as a priority while recovery from the Covid-19 pandemic and careful management of finances continues across all health systems. This will be followed by a reform of services and approaches to cancer control, recognising opportunities for change and better meeting strategic ambitions. Towards the end of the strategy, progress will be accelerated to truly transform services, embracing innovation and digital opportunities to best deliver services and support patients.

Throughout the lifetime of the strategy, there will be a focus on those cancer types that are the largest burden and have poorer survival. These include lung, breast and bowel cancer and other less-survivable cancers.

There is also a focus on reducing inequalities. There are clear, inextricable links between health inequalities and poverty. Our long-term approach is through the National Mission to tackle child poverty: Best Start, Bright Futures (2022), which aims to reduce health inequalities in the long-term by reducing child poverty now.

Cancer control (decreased incidence and mortality and increased survival) has improved over time, but Scotland still has lower survival rates and improvements have not been as rapid as in other comparable countries.

It is therefore important that the government keeps pace with all the ways to better control and manage cancer within the population. The scope of possible interventions is wide-ranging, for example:

• doing what matters to patients, and building care and treatment around them
• reducing the prevalence of risk factors such as smoking and unhealthy eating
• introducing new diagnostic and treatment techniques
• continuing the search for better scientific understanding of the disease.

Cancer control is important in meeting our National Outcome that we are healthy and active, through providing treatment and care for those with cancer, but also through population measures that will help prevent cancers in the future. These will be addressed through continuation of screening programmes and public health interventions targeted at specific preventable risk factors.

Governance and direction will be overseen by the Scottish Government, with a national oversight group owning the strategy and associated action plans, and responsibility for reviewing progress against them. Beyond this, responsibility for delivery of actions will vary from national to regional and local levels. The ‘Once for Scotland’ approach will be a core principle with national decisions and implementation made wherever possible for work that is universally applicable across Scotland. The cancer action plans underpinning the strategy will be owned and driven by relevant governance structures, recognising the breadth of responsibilities involved in delivering the comprehensive set of ambitions.

In addition, delivery of this strategic ambition will be interdependent with a range of other plans in health and beyond, including:

• NHS Recovery Plan (2021)
• National Workforce Strategy for Health and Social Care (2022)
• Digital Health & Care Strategy (2021)

Who will it affect?

Those people in the population who engage with cancer services, including population screening programmes, will be affected. This includes those who receive a cancer diagnosis, those who are referred on a suspicion of cancer, and those that are captured in the national screening programmes. In addition, this strategy affects individuals who are indirectly impacted by cancer, namely family, including parents and carers, of individuals who have received a cancer diagnosis. Wider groups affected by the plan include healthcare professionals, NHS boards, national bodies, and the Third Sector. Lastly, a small portion of the strategy impacts the general population where public health measures are being introduced to prevent cancers at the population level and awareness raising campaigns are introduced to inform the public of common signs and symptoms to look out for.

1. Which articles of the UNCRC does this policy/measure impact on?

The strategy is focused on the adult population. The current cancer strategy for children and young people: Collaborative and Compassionate Cancer Care: cancer strategy for children and young people 2021–2026, focuses on young people and where necessary we will ensure services are aligned to the adult population. This is particularly important for the teenage and young adult (TYA) population (18-25 years).

Patients aged between 16 and 18 years, depending on tumour type and individual needs assessment, may be treated in a paediatric principal treatment centre, TYA principle treatment centre, or adult services, and so for this patient group, the new cancer strategy applies to the same range of articles of the UNCRC as does the children and young people’s strategy. All such patients should be offered the option of treatment in a treatment centre appropriate to their needs, irrespective of geographical location.

None of the articles apply under this new cancer strategy, however the 2021 strategy for children and young people applies to articles 1, 2, 3, 4, 5, 6, 12, 18, 23, 24, 26, 28 and 42 (UNCRC_summary-1_1.pdf (unicef.org.uk)).

General principles: Articles 1, 2, 3, 6 and 12

• Article 1 - Everyone under the age of 18 has all the rights in the Convention.
• Article 2 - The Convention applies to every child without discrimination, whatever their ethnicity, sex, religion, language, abilities or any other status, whatever they think or say, whatever their family background.
• Article 3 - The best interests of the child must be a top priority in all decisions and actions that affect children.
• Article 6 - Every child has the right to life. Governments must do all they can to ensure that children survive and develop to their full potential.
• Article 12 - Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously. This right applies at all times, for example during immigration proceedings, housing decisions or the child’s day-to-day home life.

General measures of implementation: Articles 4 and 42

• Article 4 - Governments must do all they can to make sure every child can enjoy their rights by creating systems and passing laws that promote and protect children’s rights.
• Article 42 - Governments must actively work to make sure children and adults know about the Convention.

Family environment; Articles 5 and 18

• Article 5 - Governments must respect the rights and responsibilities of parents and carers to provide guidance and direction to their child as they grow up, so that they fully enjoy their rights. This must be done in a way that recognises the child’s increasing capacity to make their own choices.
• Article 18 - Both parents share responsibility for bringing up their child and should always consider what is best for the child. Governments must support parents by creating support services for children and giving parents the help they need to raise their children.

Basic health and welfare: Articles 6, 23, 24 and 26

• Article 6 - Every child has the right to life. Governments must do all they can to ensure that children survive and develop to their full potential.
• Article 23 - A child with a disability has the right to live a full and decent life with dignity and, as far as possible, independence and to play an active part in the community. Governments must do all they can to support disabled children and their families.
• Article 24 - Every child has the right to the best possible health. Governments must provide good quality health care, clean water, nutritious food, and a clean environment and education on health and well-being so that children can stay healthy. Richer countries must help poorer countries achieve this.
• Article 26 - Every child has the right to benefit from social security. Governments must provide social security, including financial support and other benefits, to families in need of assistance.

Education: Article 28

• Article 28 - Every child has the right to an education. Primary education must be free and different forms of secondary education must be available to every child. Discipline in schools must respect children’s dignity and their rights. Richer countries must help poorer countries achieve this.

2. What impact will your policy/measure have on children’s rights?

Getting It Right for Everyone (GIRFE) is a proposed multi-agency approach of support and services from young adulthood to end of life care. The GIRFE principles underpin our new cancer strategy. Our sister strategy for children and young people is similarly underpinned by the Getting it right for every child (GIRFEC) continuum. The strategy articulates the importance of GIRFEC in making sure that all children receive the right help at the right time. Development of the cancer strategy allows for the linking of the UNCRC Articles to GIRFEC wellbeing indicators (SHANARRI):

• Safe: Articles 2, 3,
• Healthy: Articles 6, 23, 24
• Achieving: Articles: 28
• Nurtured: Article 28
• Active: Article 28
• Respected: Articles 2, 5, 12
• Responsible: Articles 12, 28
• Included: Articles 1, 23

The ambitions within the new cancer strategy addressing prevention take a whole population approach which results in reducing inequalities and subsequently having a positive impact on children’s rights. By aiming to:

• reduce and prevent smoking, alcohol use, and obesity
• promote more physical activity
• reduce poverty now and thus reduce health inequalities in the longer term,

children and young people will have a reduced risk of cancer. This has a positive impact on their rights to be active and healthy.

The new strategy outlines the clear, inextricable links between health inequalities and poverty. Our long-term approach is through the National Mission to tackle child poverty: Best Start, Bright Futures (2022) which aims to reduce health inequalities in the long-term by reducing child poverty now.

3. Will there be different impacts on different groups of children and young people?

In general, due to the nature of focusing on adult cancer services, the only impacts will be delivered on a national or whole population level. As such, there will not be different impacts on different groups of children and young people. The exception to this is the small cohort of 16-18 year old patients who opt for treatment within adult cancer services, and to a lesser extent those treated within specialist TYA services, as the provisions of this strategy will apply and interact with the provisions of the CTYA strategy.

The cancer strategy specifically aimed at children and young people is set out in our Collaborative and Compassionate Cancer Care: cancer strategy for children and young people 2021–2026

4. If a negative impact is assessed for any area of rights or any group of children and young people, can you explain why this is necessary and proportionate? What options have you considered to modify the proposal, or mitigate the impact?

No negative impacts have been identified.

5. How will the policy/measure give better or further effect to the implementation of the UNCRC in Scotland?

The GIRFEC approach is underpinned by the UNCRC, and requires those who work with children and young people to put children at the centre of their day-to-day practice by adopting a rights-based approach. This approach recognises and realises all UNCRC Articles, but in particular highlights the requirement to consider the best interests of the child (Article 3), and the need for children’s views to be taken into account when decisions are being made about them (Article 12).

These articles are key in managing the health and wellbeing of young people diagnosed with cancer, and including them in any decision made about them and/or their cancer treatment.

[Section 96(2) of the Children and Young People (Scotland) Act 2014 provides a statutory definition of ‘wellbeing’, directly relating it to the eight wellbeing indicators developed as part of the GIRFEC approach which aims to improve outcomes for all children and young people in Scotland. The statutory guidance for Part 18 (Section 96) of the Act provides further detail.]

6. How have you consulted with relevant stakeholders, including involving children and young people in the development of the policy/measure?

Consultation on draft Strategy

Below is an overview of the consultation and engagement undertaken when developing the strategy. Given the emphasis of this strategy on adult cancer services there was deliberately limited engagement targeting services for children and young people. When the children and young people strategy was drafted there was engagement with a wide range of clinicians (covering specialties and geography) working within children’s cancer services.

Within Government

We have engaged directly with the following Health Boards and groups: National Services Division, Public Health Scotland, Centre for Sustainable Delivery; and territorial Boards through the Scottish Association of Medical Directors, Board Chief Executives, Directors of Pharmacy, and Directors of Planning, as well as the Cancer Managers Forum and the Regional Cancer Networks. All of these groups have oversight of both adult cancer services and children’s cancer services and are able to ensure that this strategy is aligned with the children and young people cancer strategy.

Public Consultation

A public online consultation was open from 12 April to 7 June 2022. Views were sought on areas to prioritise in relation to cancer prevention, management and care: New cancer strategy: consultation - gov.scot (www.gov.scot)

257 responses were received - 156 responses were submitted by individuals and 101 responses submitted by organisations across various sectors.

The responses were independently analysed and the analysis was published on 17 November 2022: Cancer strategy: consultation analysis - gov.scot (www.gov.scot)

The responses, where consent was given, were also published on 17 November 2022: Cancer strategy: draft vision, aims and priority areas - Scottish Government - Citizen Space (www.consult.gov.scot).

Responses were received from third sector representatives of children and young people including Young Lives vs Cancer and Teenage Cancer Trust.

Business/Third Sector

We have consulted with the Scottish Cancer Coalition (SCC) and the Less Survivable Cancers Taskforce (LSCT) on the new Cancer Strategy. The SCC is a partnership of third sector organisations dedicated to improving cancer services and outcomes for patients in Scotland, including Young Lives vs Cancer and the Teenage Cancer Trust. The LSCT brings together six charities supporting patients who have these specific types of cancer.

7. What evidence have you used to inform your assessment?

Desk-based research was carried out using a variety of evidence, including:

• Health Inequalities in Scotland (Nov 2022)
• Long-term monitoring of health inequalities: March 2022 report
• Reducing health inequalities (PHS, 2021)
• Cancer Incidence in Scotland (PHS, 2022)

Comments within responses to the consultation were also considered.

8. How will the impact of the policy/measure be monitored?

Scottish Government and the National Cancer Advisory Groups will work with Health Boards to implement the actions in the Strategy and accompanying actions plans.

A monitoring and evaluation plan is being developed to track delivery of the ambitions within the strategy and related outcomes, across the strategy and accompanying action plans’ lifetime.

9. How will you communicate to children and young people the impact of the policy/measure on their rights?

We will continue to engage with stakeholders throughout the lifetime of the strategy and accompanying action plans, including those who support children and young people diagnosed with and undergoing treatment for cancer.

Progress reports on the strategy and action plans will be published on a regular basis.

10. Sign & Date

Gregor McNie

Unit Head, Cancer and Rehabilitation Policy

28 March 2023

Lynne Nicol

Deputy Director, DHQI: Healthcare Planning and Quality Division

31 March 2023