Transition of children and young people (C&YP) to adult services Task and Finish Group

Agenda Welcome and Introduction SCN Structure and Governance overview Terms of Reference, Membership, Chair and PPE Project Development and Overview Presentation: Challenges and Barriers (baseline assessment and pre work) Group Work: Implementing Transition / Moving Forward. Summary and Actions

Children’s and Maternity Strategic Clinical Network Structure and Governance Work Programme Priorities, 2014 - 2016 February 2015

National Maternity Priorities Reduction in stillbirth and neonatal death rate Reduction in preterm delivery rate Maternal morbidity esp. major haemorrhage – reduce avoidable harm NHSE/RCOG patient safety board Perinatal mental health Pre conceptual health - smoking, obesity Maternity services as ‘window’ on NHS – major life event - we can do better

Y&H Maternity Priorities Stillbirths (Domain 1/5) Admissions to and transition from Neonatal Units (Domain 1/5) Perinatal Mental Health (Domain 1/3/5) Maternal Morbidity and Critical Care (Domain 3/5) Maternity Services Configuration (Domain 1/3/5) Pre Term Deliveries (Domain 1/5)

Dr Jacqueline Cornish, National Clinical Director, 20.09.2014

Y&H Children’s Priorities Paediatric Surgery and Anaesthesia (Domain 1/3/5) Child and Adolescent Mental Health Services (CAMHS) (Domain 1/3/5) Transition of C&YP to Adult Services (Domain 1/5) Acute Paediatric Care Service Configuration (Domain 1/3/5) Reducing A&E Attendances and unscheduled / avoidable admissions (Domain 2/3) Unplanned emergency admissions for LTC’s (Domain 2) Improved and integrated Care for children with a disability (linked to the Children and Families Bill 2013) (Domain 2)

Common Themes for C&M Service Configuration Transition C&M Intelligence Network (CMIN)- benchmarking of C&M information PPE –improving information, engagement and experience, Relationships with Local Authorities

Contacts C&M Clare Hillitt, Strategic Clinical Network Manager (Children’s and Maternity) Clare.hillitt@nhs.net Stacey Blueitt, PA to Clare Hillitt for general Children's and Maternity queries Stacey.blueitt@nhs.net Jim Dwyer, Strategic Clinical Network Maternity Clinical Lead James.dwyer@york.nhs.uk Hilary Farrow, Quality Improvement Manager, Maternity Hilary.farrow@nhs.net Anna Downward-Fletcher, Quality Improvement Lead, Maternity anna.downward-fletcher@nhs.net Fiona Campbell, Strategic Clinical Network Children’s Clinical Lead fiona.campbell26@nhs.net Andrew Clarke, Quality Improvement Manager, Children’s andrew.clarke14@nhs.net Emmerline Irving, Quality Improvement Lead, Children’s emmerline.irving@nhs.net Laura Whixton, Quality Improvement Lead, Children’s laura.whixton@nhs.net

Terms of Reference Membership Chair PPE

Transition of children and young people (C&YP) to adult services Project Overview

‘From the Pond into the Sea’ CQC 2014 In 2010 Sir Ian Kennedy shared his concerns that transition, ‘long the cause of complaint and unhappiness’ was a critical area for service improvement, as services were failing to meet the needs of young people Getting it right for children and young people, overcoming cultural barriers in the NHS so as to meet their needs (2010) ‘From the Pond into the Sea’ CQC 2014 ‘Transition from children's to adult services for young people using health or social care services’ NICE, due Spring 2016

National Context: National Transition Working Group Strategic Clinical Network Transition Forum Y&H SCN Key Themes and Principles: Document Summaries – Emm Irving South East Coast, Transition of CYP to Adult Services Best Practice Pathways– Jan Parthan. South West SCN, Transition Dashboard – Jennie Shine.

Project Aims To: Develop an understanding of transition… Support Commissioners and Provider organisations across the whole health and social care system to develop an integrated approach to transition….. Support collaborative working in order to respond and meet the needs of CYP as they transition from children’s to adult services… Seek to provide a generic approach to transition which can be used by all Providers and Commissioners to improve quality of care and develop a patient centred approach…. Undertake a baseline assessment and benchmarking exercise in all Trusts across Yorkshire and the Humber.

Project Outcomes: Identify areas of variation against the baseline assessment and benchmarking. Identify the priorities for transition across the region. Identify issues, challenges and barriers for transition across the region. Support organisations to develop outcomes for transition. Support organisations to develop action plans to improve transition against the ‘Key Themes and Principles’ documents developed by Y&H SCN including ensuring all services are ‘young person friendly’. Identify and share examples of best practice. Make recommendations to local commissioners on models of transition that support evidenced best practice to improve outcomes for children. Identify evidence based transition documentation and develop a ‘Transition Toolkit’ for providers and ‘Transition Guidance’ for commissioners. Support organisations to develop action plans to improve engagement and involvement of CYP and their families

Draft Project Plan: Identify the challenges / barriers to transition and recommendations / next steps. Identify appropriate mechanisms to benchmark user experience / feedback. Identify relevant documentation and evidence to inform ‘Transition Toolkit’ for providers and ‘Transition Guidance’ for commissioners. Identify and agree relevant standards to form the benchmarking tool for transition e.g. Great Ormond Street Benchmarking Tool. Identify and establish appropriate linkages to work already undertaken across Y&H e.g. - Leeds Children’s Hospital / Leeds Teaching Hospitals NHS Trust - Sheffield Children’s Hospital / Sheffield Teaching Hospitals NHS FT

- Ready Steady Go Hello – Southampton University Hospital Draft Project Plan: Identify and establish appropriate linkages to work already undertaken nationally - Ready Steady Go Hello – Southampton University Hospital - National Transition Working Group Identify and formulate recommendations Complete Benchmarking / Toolkit and Guidance testing. Facilitate Transition Toolkit / Guidance Launch Event Determine next steps and possible outputs/actions with members of the T&FG.

Transition of children and young people (C&YP) to adult services Baseline Assessment

Provider Key Findings: The majority of provider trusts have introduced elements of transition. Transition models, pathways and documentation e.g. transition plans, are primarily focused on sub specialities (particularly diabetes) and there is great variation across the region. Less than 50% of trusts identified that they have good relationships with adults services and reported limited, ad hoc involvement of adult services in transition. There is no consistent age across the region for when transition begins. Involvement of young people and their parents is variable with pockets of good practice i.e. youth forums, youth workers… On the whole data specifically related to transition is not reported and outcome measures are predominantly based on patient experience surveys

CCGs Key Findings: Work is ongoing and developing in relation to transition and is included in work programmes. The majority of CCGs do not have specific funding, contractual arrangements or service specifications (many are developing inserts for specifications) in place for transition. All CCGs reported that transition is included in a number of Strategic Partnership Groups, Partnership Forums and Local Children’s Networks. All CCGs are working in partnership with Local Authorities, Providers (trusts), Community Providers and Voluntary Sector in relation to transition. Over 50% of CCGs that responded do not collect specific data on performance. Involvement of young people and their parents is variable with pockets of good practice i.e. children’s champions, experienced based service design. The majority of CCGs do not have a lead for transition.

Strengths: Providers Future Plans: CCGs Joint consultations and pathways with adult services. Trust transition forums and boards. Key workers/transition leads. Future Plans: CCGs Develop local provision for children and young people with learning disabilities. Ensuring the transition processes is referred to in all service specs. Implement the pathways developed, review the role of transition workers and support transition programmes with in trusts. Working towards transition champion in acute trusts.

Transition of children and young people (C&YP) to adult services What can the Network Do? Provider Consistent policy for transition across the health agenda, particularly around providing guidance. Developing a consistent transition plan with young people. Increase and improve staff education about the specific needs of young people and their families during transition. CCG Developing outcomes for transition. Identify best practice, theory and evidence of implementation. Engagement of all aspects of health care in the transition planning process. Common Active engagement of all adult stakeholders and services, including suitable adult provision and venues.

Transition of children and young people (C&YP) to adult services GOSH Benchmarking

GOSH Benchmarking Most challenging factors appear to be: Factor 1 - Moving to manage a health condition as an adult. Factor 2 - Support for gradual transition. Factor 3 - Co-ordinated child and adult teams. Factor 8 - Involvement of the GP. Key Themes for challenges that impact across a number of factors include: Integration across the whole health and social care pathway. Workforce development and capacity (role of transition/ Key worker). Accessibility and Environment. Appropriate joined up documentation (including information for CYP). Engagement of CYP and parents/careers/peers. Robust commissioning arrangements and outcomes. Funding and resource. Integration across the whole health and social care pathway. Joint commissioning between CCG and local authority for individual young people Being able to hold meetings/reviews for individuals at times when health staff are able to attend and contribute to joint plans. Ensuring that we are working in as integrated a way as possible across health, education and social care as we move forward. Must look at this with schools and local authority as schools have got a framework that says at 14 year 9 start transition planning Work force development Ensuring relevant staff have specific / specialist knowledge, education and training re: transition and effective communication with YP. Ensuring most effective professional / team skill mix including psychologists and youth workers where appropriate Lack of awareness and understanding across all services around transition. Accessibility and Environment. Young people only clinics and areas - In some areas small volume of patients cant justify the finance and staffing. Young people friendly waiting areas. Appropriate joined up documentation (including information for YP). Engagement of CYP and Parents/careers/peers. Peer Support Robust commissioning arrangements and outcomes. Gaps in commissioning and service provision – particular between 16 – 18 years issues with children out of area – (lac) Issues with continuity of care. Champions in commissioning and provider units – potentially for individual services, appropriate amount of champions for provision. Asking the questions about transition, champion the needs of children in this age group. Funding and resource. Resource and finances a challenge about doing things differently.

General Using the GOSH Benchmarking as a tool. Needs to link into the SEND Reforms – Education, Health and Care (EHC) Plans. Varying needs, barriers and challenges for different groups of CYP. CYP who need to/ are ready to transition however there is no overarching adult service for these patients. Managing paternalism exhibited by both medical and nursing staff. Using the GOSH Benchmarking as a tool. Page 8 was very useful, the fact that the starting point for using the benchmark for transition was to identify which areas of transition needed to be improved within our organisation rather than trying to apply all aspects of the tools to all aspects of the organisation. I think it will be important for the Task and Finish Group to discuss whether we are in agreement that this is how the tool should be used or whether there would be an expectation that organisation would bench mark against all the indicators. which aspects of the indicators should be seen as universal skills that all children and young people should have and that could be provided possibly through education through PHSE rather than something specific that health should be providing. An example of this was around “how to order, collect prescriptions and book re-arranging cancelled appointments”. Actually all young people are going to require this knowledge at some point even if they are not receiving input around the time of transition. We recognised that the tool appears to focus on the health input into transition, however at times it does not seem to build on the work carried out jointly with other agencies Different Groups of Young People. Patients with a single chronic condition that need on-going active management, an example of this would be a young person with diabetes. CYP that are only seen for episodes of care e.g. a young person with moderate asthma who . CYP with learning difficulties. CYP with multiple difficulties, e.g. a young person with cerebral palsy with normal intellect. CYP with complex behavioural problems who may be requiring support from paediatrics but would not meet the threshold for the adult mental health service. Some YP multiple chronic diseases and transitioning in different specialities ? lack of coordination /fragmented care, lack involvement with GP as seen as complex/ specialist patients No Adult Service Neuro-disability complex care cases

Factor 1 Moving to manage a health condition as an adult. Adolescence is a difficult time, where things are changing for young people in multiple areas of their lives. Ensuring appropriate information is available in a format that is accessible for young people. Lack of resources to address issues for young people. This approach will need support from partners across the health and social care system, in particular schools. Young people must be engaged and consulted on what is right for them, parents concerns maybe a barrier to this. Services are not routinely commissioned with this focus. Information for CYP This should include social and life skills information e.g. Provision of appropriate advice re: Relationships, sexual and mental health issues delivered in a way that is useful / acceptable for YP

Factor 2 Support for gradual transition Evidence suggests that systems are not always set up to support this approach. Need to look at transition across the whole health and social care pathway. Time available for medical staff to enable them to spend the required time explaining and supporting. A key worker should be allocated to support this – training and resource issue. Lack of awareness from services/ staff that transition can start from 11yrs upwards and is often done from 17yrs+. Lack of information sharing often means that health professionals may be unaware of what else is happening in the young person’s life.

Factor 3 Co-ordinated child and adult teams Engaging adult services and them to understanding their role is challenging. Adult services are unable to partake in any transition services due to restrictions in their service. Children and adult services never meet up. Lack of joint working protocols. Lack of shared roles and responsibilities. The range of services that children transfer from and the differing thresholds between children and adult services. Lack of provision of specific transition clinics / Co-ordination and facilitation of joint MDT clinics. Going from children’s into adults with a number of different referral’s. Issues with data sharing. Lack of appropriate training and support. Joined up policies and protocols required. Additional resources required to provide the necessary support.

Work Force Development. Factor 4 Services ‘young people friendly’ Work Force Development. Transition ethos- not everyone is interested in this age group or makes them a priority. ‘Age’ appropriate facilities for young people. Timing of clinics and provision of out of hours clinics (weekends / evenings). Allocating designated time to plan / set up effective transition processes for new services.

Factor 5 Written documentation Reduce the need for young people having to provide the same information over and over again. Transfer of appropriate medical records from child to adult services. Documentation that is appropriate across health and social care - sharing transition plans / documentation between services and with CYP and parents. Ensuring transition documentation fits with young people who have an Education Health and Care Plan, rather than offering young people a separate health passport. IT systems that don’t talk to each other, meaning it’s often difficult to share information in a timely manner. Ownership of plans by professionals to keep them updated (lack of clarity regarding roles and responsibilities).

Factor 6 Parents Parents and carers need to be involved and informed at an earlier stage and throughout the transition process. Parents- letting go often a difficult issue, time needed with them too. Are the appointment times convenient for parents/ carers to attend? Do staff have necessary skills to work with parents?

Factor 7 Assessment of ‘readiness’ Resources may be required in order to provide support and prepare young people so they are ready for transition. Needs to be linked with EHC Plans. Transition Lead / Key Worker Role needed. Parents, carers, young people and professionals who know and have worked with the young person will need to feed into this process.

Factor 8 Involvement of the GP Lack of GP engagement and buy-in. Young people often have not had much contact with their GP. GP’s ideally need regular contact prior to the transition stage. Training for GP’s / primary care. Time limitations in primary Care. Longer appointments will be required than are normally allocated. How GP’s access data/ information, are IT systems linked? GPs need to be active partners in young people’s care across the whole of the health and social care pathway, maintaining relationships with and links with: secondary care (where necessary) social workers, education and other agencies.

Transition of children and young people (C&YP) to adult services Group Activity: Implementing Transition / Moving Forward.