Children’s Palliative Care: National Policy Context and the Child Health Strategy Liz Morgan Professional Advisor – Children and Young People Department of Health January 2009

Setting the Context….

The NHS Next Stage review: High Quality for All (DARZI) Working with NHS staff to ensure that clinical decision-making is at the heart of the future of the NHS and the pattern of service delivery Improving patient care, including high-quality, joined-up services for those suffering long-term or life-threatening conditions, and ensuring patients are treated with dignity in safe, clean environments Delivering more accessible and more convenient care integrated across primary and secondary providers, reflecting best value for money and offering services in the most appropriate settings for patients Not much to say here. [NB - People are fully immersed in the Next Stage Review and will have just presented findings from their regional work]

Defining Quality (NSR) Three elements: Patient Safety Effectiveness of Care Patient Experience

Principles of Change Co-production – working together Subsidiarity – decisions made as close to patients & the community as possible Clinical Leadership System alignment – same goals

Key Policy Messages translated to Children & Families Listening to the child & family Developing services around the family Care closer to home/at home Integration of the workforce Partnership working – across health, education & social care

Children’s Policy Drivers….

The Children’s Plan: Building brighter futures Children’s Plan sets out the vision for children & young people, and trailed development of a Child Health Strategy. Government’s 2020 ambition for all children and young people is to: Secure the wellbeing and health of children and young people; Safeguard the young and vulnerable; Achieve world class standards in education; and Close the gap in educational achievement for children from disadvantaged families Ensure young people are participating and achieving their potential to 18 and beyond Keep children an young people of the path to success.

Health & NHS Policy (incl. Darzi) Vision of Health Services shaped to promote health and care for ill health or vulnerability in childhood Cross- Govt plan outlines how DCSF will work with other Govt Departments, families, communities and front-line staff to improve the lives of children over the next decade Health & NHS Policy (incl. Darzi) Child Health Strategy Children's Plan Key points: Children’s Plan reflects existing vision for child health as set out in Every Child Matters and the Children and Maternity National Service Framework. The Children’s Plan aims to provide a roadmap for Government policy on children, young people and families. It aims to set out both 10 year ambitions and specific new policies to accelerate progress over the CSR period. As a key partner we are fully committed to ensuring the NHS plays its part in improving the health outcomes for children. By 2020 Govt has set out ambitions to see: families able to grow up free of blight of child poverty, with child poverty halved by 2010 and eradicated by 2020 children enjoying healthy lifestyles and outcomes, with the proportion of overweight and obese children back to 2000 levels all children with the social and emotional capabilities that they will need for a successful adult life; and all children able to enjoy an active childhood. Plan trailed further work in the next year including: Publishing h an Obesity Strategy Undertake a review of Child and Adolescent Mental Health Services Publishing a child health jointly between DCSF and DH.

The Child Health Strategy must respond to the specific challenges faced by vulnerable groups and ill children, as well as promoting healthy behaviour by all children and young people We need to ensure services are sufficiently: Integrated Personalised Preventative Targeted We are struggling to meet many of today’s biggest public health challenges and there are worrying trends. Health promotion is critical. All Ill Vulnerable Children with long term conditions or disabilities do not get the support needed to fulfill their potential. Key issues around access to specialists and age-appropriateness of settings where treatment is received. We do not consistently undertake risk assessments and target support. Groups suffer disproportionately poor health outcomes Miss opportunities to intervene early The challenges we face for children and young people’s health vary depending on which group is being considered. The Child Health Strategy must seek to improve: Health promotion for all children and young people (blue) e.g. rising rates of obesity and binge drinking The early intervention necessary for those who are vulnerable to poor outcomes (pink) – we know that Look after children have pooper health outcomes than their contemparies And the management of illness and access to specialist care for those children who are ill (yellow). Of course there are links between the needs of all three groups, but the Strategy would be remiss if it did not reflect the needs of all of these groups. In terms of the health outcomes that we want to promote….[next slide]

Child Health Strategy Emerging themes: Health promotion and prevention (eg informing families and supporting healthy lifestyles) Early intervention Personalised and integrated services (accessible and designed around the needs of users) Effective, targeted access to specialist services

Child Health Strategy Key Challenges to address: Unwanted variability in outcomes and effectiveness of services Poor co-ordination of services – a barrier to personalisation and a shift to prevention Nature of public health challenges

Other Links and Dependencies Darzi Next Steps Review Maternity and neonatal services networks Bercow review into services for children with speech, language and communication needs. Healthy schools programme Facing the future (Health Visitors) Neonatal Taskforce Child Health Promotion Programme (Healthy Child Programme) Family Nurse Partnership Care Closer to Home (Our Health, Our Care, Our Say)

Links and dependencies contd… HR issues around the wide range of employers/organisations providing NHS services Public Health Long Term Conditions Palliative Care (including End of Life Care) ‘Better Care: Better Lives’ “Aiming High” programme for Young People and Disabled Children Modernising Careers (nursing, medical etc) Working Time Directive (including more consultant Paediatricians) Interdependencies of Specialist Services

Children’s Palliative Care

The Government’s Response: “Better Care, Better Lives”

The Vision… “Every child and young person with a life-limiting or life-threatening condition will have equitable access to high-quality, family centred, sustainable care and support, with services provided in a setting of choice, according to the child and family’s wishes.”

Priority Areas Planning and developing an effective and responsive Improved data Planning and developing an effective and responsive workforce Equality of access to universal services Responsible and accountable leadership Choice in preferred place of care Better end-of-life care Stronger commissioning & value for money Successful transition – children’s to adult services Expansion of respite/short break services Investment in Community Children’s Nursing services

Current Children’s Workforce Issues Darzi Next Stage review including maternity, the new born and children’s services as well as the review of workforce planning - ‘High Quality for All’ Primary Care Strategy Inequalities Agenda DSCF long term Workforce strategy to support 10 year Children’s Plan PCT & LA Joint Needs Assessments – joint commissioning and workforce planning SHA role National Neonatal Taskforce (including workforce sub-group) Maternity – current and future services, access to help and advice within 12 weeks of pregnancy Adolescent health

What do we mean by the Children’s Workforce?

Workforce Directorate Patients DH Policy RCOG,RCN, CPHVA,RCGP DH Clinical leads NMC DSCF Workforce Directorate BMA, Unison and Unite RCM Children Jointly agreed approach HVA CSIP SHAs/PCTs & Providers NHS Professionals ???? HR Services Other stakeholders e.g. CWN,CWDC Workforce Directorate Pay & Pensions Regulation Skills for Health Workforce Review Team Education & Training NHS Employers National Workforce Projects

Workforce Priorities Health visiting School nursing Neonatal nursing Community Children’s Nursing Paediatric medicine Speech and Language Therapists

Making it Happen: Levers and Initiatives to drive change……..

Child Health and Wellbeing is a priority for the Government as reflected in a Number of Public Service Agreements: The Children, Families and Maternity Branch has a structured Programme of work in Support: PUBLIC SERVICE AGREEMENTS: PSA 12: Improve the Health and Wellbeing of Children and Young People; PSA 13: Improving Children and Young People’s Safety PSA 14: Increase in the Number of Young People on the Path to Success; PSA 18: Promote better Health and Wellbeing for All; PSA 19: Better Care for All

Child Health and Wellbeing is a priority for the Government – this is reflected in the NHS Operating Framework and related Vital Signs and NIS indicators NHS Operating Framework Children and maternity services are identified as part of the national priority areas for 2008- 10 Supporting this 5 of the 12 PSA indicators focus on child health, & 4 are reflected in the Vital Signs indicators for PCTs 3 of these PSA indicators – breast-feeding at 6-8 weeks, obesity among primary aged children, and CAMHS – are national priorities for local delivery i.e. all PCTs required to include in local plans There is also a PSA priority on services for disabled people & therefore includes CYP – PCTs working with communities and local partners prioritise for themselves

2009/10 Operating Framework ‘five key Areas where PCTs are expected (working with local partners) to pay particular attention: Improving cleanliness and reducing HCAI’s Improving access through the 18 week referral pledge & access to GP services Keeping adults & children well, improving health and reducing health inequalities Improving patient experience, staff satisfaction and engagement Preparing to respond in a state of emergency, such as an outbreak of pandemic flu’ A key vehicle for improving services within DH is the Operating Framework – published each year to set out key priorities for the next twelve months (?2 years) to which PCTs are expected to respond and take lead locally. One of the five key areas for work this year has been improving health and well-being including children - a strong lever for arguing the case for improving investment in CF&M services especially improving services and experience for children with disabilities and their families. (NB Emphasise that children are specifically mentioned in current doc – first time)

Making it Happen Responsibility for Local delivery……

Commissioning is the Key World Class Commissioning Transforming Community Services Outcomes and quality focussed Data & evidence

Clarity of components What needs to be done, based on best evidence. Who needs to do it, based on competencies. Where it needs to be delivered, based on safety and convenience. With what additional resources e.g. equipment, investigation access, decision support.

And finally….. Transforming Community Services

Strategic Context Key Messages from the Primary and Community Care Strategy Community services are critical to the delivery of improved services for patients and communities There is much good practice but too much variation in quality and outcomes Investment in staff and infrastructure is required to develop and deliver excellent ‘out of hospital’ care Clinical staff are central to driving change to improve quality, access and health outcomes something like Staff need the business tools to support them commission and provide high quality community services. DH is committed to driving the national improvement programme DH is committed to working with and supporting clinicians working in the community to maximise the potential for Best heath services and health outcomes Rewarding clinical careers and opportunity in the community Incentivising high quality and innovation I was asked to be funny which I can not promise but I do promise to be to the point. I want to start by looking at community services and what we know about them and what we do not know about them Then I will cover the strategic goals and benefits that we expect to realise through out this project before looking at a broad overview of the work streams that make up the metrics project. At the end of July a guidance document will be published based on a review of information models across the NHS and international examples and I will talk about 3 key messages from that review I want to conclude on what can you be doing now to improve your services in regards to metrics Just ask questions along the way

Our Vision : Primary and Community Care Strategy sets out a vision for primary and community care Where people shape services – giving people more say and more choice and more control in their own health care Which promotes healthy lives and tackles health inequalities – working with key partners we have a huge opportunity to deliver transformational change Where services are continuously improving quality through effective clinical leadership ,new freedoms and improved infrastructure I was asked to be funny which I can not promise but I do promise to be to the point. I want to start by looking at community services and what we know about them and what we do not know about them Then I will cover the strategic goals and benefits that we expect to realise through out this project before looking at a broad overview of the work streams that make up the metrics project. At the end of July a guidance document will be published based on a review of information models across the NHS and international examples and I will talk about 3 key messages from that review I want to conclude on what can you be doing now to improve your services in regards to metrics Just ask questions along the way Where public and clinical professionals are leading local change and developing best practice and joined up local services

Strategic Context Transforming Community Services Programme High level aims Transforming Community Services Programme Clinical and service improvement Development of clinical and leadership skills and resources to deliver high quality evidence based care and services that promote health and well being with action on inequalities. 1 Business improvement Strengthening business process. Reforming the provision and commissioning of community services. Enabling performance and outcomes to be demonstrated and benchmarked, driving-up quality and reducing variation in performance. 2 I was asked to be funny which I can not promise but I do promise to be to the point. I want to start by looking at community services and what we know about them and what we do not know about them Then I will cover the strategic goals and benefits that we expect to realise through out this project before looking at a broad overview of the work streams that make up the metrics project. At the end of July a guidance document will be published based on a review of information models across the NHS and international examples and I will talk about 3 key messages from that review I want to conclude on what can you be doing now to improve your services in regards to metrics Just ask questions along the way

Clinical services improvement Objectives and scope Benefits To determine action that is required at national level to enable local leadership and delivery of best practice, evidence based care and excellent patient experience in six key areas. To enable change in community services through focus on six key areas by providing leadership, tool kits and approaches to quality and incentives at national level. Six key areas: Health improvement and health inequalities Children and Families Long term conditions Acute care and specific treatments to be delivered close to home Rehabilitation End of Life Six high impact changes being developed for each area through clinical engagement. I was asked to be funny which I can not promise but I do promise to be to the point. I want to start by looking at community services and what we know about them and what we do not know about them Then I will cover the strategic goals and benefits that we expect to realise through out this project before looking at a broad overview of the work streams that make up the metrics project. At the end of July a guidance document will be published based on a review of information models across the NHS and international examples and I will talk about 3 key messages from that review I want to conclude on what can you be doing now to improve your services in regards to metrics Just ask questions along the way

Thank you for listening Questions?