YOUNG PERSON AND THEIR PARENTS/CARERS WORK WITH THEIR CLINICAL TEAMS IN DURING PREPARATION TRANSITION FOR AND (PERSON-CENTRED PLANNING) | Management of transition is an active process:
• A named worker coordinates care around the individual and also provides support
Plan early and prepare the young person and their parents/carers
• • Provide a keyworker or lead professional to plan the transition with the young person – before and after transition
• Young people and their parents/carers are actively engaged in the management of their transition – this includes asking them if they feel that the transition delivered what they hoped and feeding back how their involvement has influenced the process
• Parents/carers are included and there is a planned and gradual transfer of responsibility for health to the young person (timing individualised)
• Staff from children’s/young people’s and adults’ services are engaged in development of the plan
Transition planning:
• Identifies the hopes, aspirations and goals of the young person, who plays an active part in decisions about their future
• Is flexible in the timing of the move to adult services – the threshold is a demonstration of an adequate level of readiness for self-management
• Uses strategies to involve young people and parents/carers from isolated or hard-to-reach communities
• Includes a review of the plan with the young person at least annually
• Provides support after transfer to the adult service
Include a health plan identifying the skills for self-management of their condition, which:
• Takes account of physical, psychological, social, educational and vocational aspects
• Addresses loss of continuity of care and ensures new relationships can be established
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LEADERSHIP | Effective leadership is in place throughout the organisation(s)
Child and adult teams are co-ordinated and knowledgeable |
EDUCATION AND TRAINING | Young people and parents/carers are supported to build independence through:
• Being provided with knowledge about their condition and the skills and support to best manage their care
• Being taught self-infusion early
• Education and training being made available and accessed to develop the required competencies of all those delivering care (assess, plan, implement, evaluate and revise care according to all young people’s and parents’/carers’ individual needs)
• Ensuring good working knowledge of professional roles or the core team as well as other agencies
• Training professionals in adolescent health, and young people’s developmental and wider social and emotional needs
• Offering contact with peer support groups |
CONSENT AND CONFIDENTIALITY | Confidentiality is maintained by all staff members.
Explicit or expressed valid consent is obtained and recorded prior to sharing information or providing treatment or care.
Local information-sharing protocols are observed, taking account of young people’s wishes about confidentiality and the involvement of their parents/carers.
Young people’s best interests are maintained where they lack the capacity to make particular decisions |
DOCUMENTATION | Clear, concise and consistent documentation that:
• Recognises and respects that the individual is a young person, not a child or adult
• Provides all relevant information to individuals and teams involved in supporting a young person’s transition, including their GP, so they are able to liaise with other relevant teams to facilitate access to relevant services
• Is based on up-to-date evidence-based policies, procedures, protocols and guidelines
• Incorporates a health plan into each transition plan
• Provides accessible information about services, shares information between services and facilitates integrated working
Care records are clear, are maintained according to relevant guidance and subject to appropriate scrutiny |
SERVICE PLANNING AND DELIVERY | Young people are engaged in the design and delivery of services, with opportunities to ask questions, express their opinions and make decisions.
Providers should review and redesign services to ensure they meet users’ needs, including the use of technology and social media.
Services are designed to meet the differing needs of young people with severe haemophilia and other bleeding disorders, other non-severe bleeding disorders, girls with bleeding disorders and carrier girls.
Resources are targeted to deliver care
Care is integrated with:
• Collaborative and flexible working between teams and agencies
• Clear and effective communication between young people and parents/carers, staff, organisations and agencies
• A shared philosophy between adult and children’s services, recognising cultural differences
• Co-ordinated, consistent and accessible links between health and social care organisations that work in partnership with other relevant agencies
Children’s and adult services are engaged in identifying unmet need and strategic planning of services
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SAFETY/SAFEGUARDING | All agencies working with young people and their families take all reasonable measures to ensure that the risks of harm to young people’s welfare are minimised.
Safety and security of young people, parents/carers and staff is maintained at all times. Robust, integrated systems are in place to identify and respond to abuse, harm and neglect. |
ASSESSMENT | Assessment of readiness for transition |