Transition Briony McNelly – Nurse Practitioner The Mark Holland Metabolic Unit Salford Royal NHS Foundation Trust

What is transition?

Learning to let go Parent’s have been their main care provider all of their lives You knew best throughout their childhood And probably still do But young people need to learn and develop themselves A young person can consent to their own care at 16 This is the law It is important to prepare the young person for this Both professionals and families

Parent’s concerns Who will they be seeing? What will change? Where can I park? Will I be able to speak to their doctor? They are still my child Why can’t I make their decisions? How will their condition change?

Young person’s concerns Can I drink alcohol? Does my mum have to be in the room? I don’t want to be different Do I have to come to hospital? Girlfriend/boyfriend issues I don’t want to miss college due to exams What medication can I stop? Is my condition going to stay the same? Do you have any patients at your centre with my condition? How do I get to your hospital? Can my mum stay with me if I am unwell and need to be admitted to hospital? Do I need to stay on my diet?

Transition Clinic Manchester children’s hospital - 4 weekly transition clinic Bradford – 2 monthly clinic Transition team – Doctor, Clinical Nurse Specialist, LD nurse and dietitian Rotating doctor 1:1 consultation with nurse and patient Same day appointment at SRFT Transition passport Ready, steady, go paperwork Care taken over on the day with or without adult hospital visit

Adult Nurse Role Transition clinic at Manchester/ Bradford 1:1 Care plan to identify needs Young person clinic at SRFT Transition document Home visit Link person for family – point of contact Hospital passport Liaise with local services Best interest meeting

What are the differences with an adult service? The focus is on the young person from 16 upwards Questions directed to you, not parents It is up to the young person if parents are involved Attendance is stricter Adult hospital patient numbers are very large compared to children’s hospital – non attendance is not tolerated Information given to you

What are the differences with an adult service? Focus on adult problems - Diabetes, heart problems, cholesterol G.P. main local contact Your responsibility Choose appointment Decisions about further education Employment opportunities  Independence   Pregnancy 

Ready Steady Go: Transition Programme What? A purposeful, planned process for adolescents with chronic conditions as they move from child-centred to adult orientated health care. Why? Reduce morbidity and mortality Improves vocational success Who? Young people >11yrs with chronic condition’s How? Ready Steady Go programme In response to this evidence there have been a number of reports and guidelines seeking to reduce the risks associated with moving to adult services (6-8). Central to this work is the concept of transition (9) - a gradual process of empowerment which equips young people with the skills necessary to function confidently and successfully and learn to manage their own healthcare in paediatric and adult services. Effective transition has been shown to improve long-term outcomes (10,11) and to improve YP experience (12). In addition, the importance of a holistic programme that addresses the medical, psychosocial and vocational needs of the YP within YP friendly services has also been recognised (12,13). However, despite the evidence of the risks associated with a poorly managed move to adult services and availability of potential solutions, studies continue to show that the move remains ad hoc and an unsatisfactory experience for a significant number of YP and their families. (14). Lack of understanding of transition. Transition is sometimes treated as an event rather than a gradual process of empowerment. Some healthcare professionals report they have transition arrangements in place but on closer examination it appears that they are simply transferring the YP to adult services with no empowerment of the YP or carer.(15) Some paediatricians assume that their specialty and locality requires a unique approach to transition (16,17). However many of the issues faced by YP during transition are generic regardless of the nature of their long term condition. This allows a generic programme to be adopted. The challenge has been to develop a generic transition tool that is simple and easy to use for the YP and carer, is accepted and addresses all the healthcare issues considered important by sub-speciality healthcare professionals as well as being straightforward and economical to implement. In short, a means of engendering a cultural change towards transition is required; Ready Steady Go is designed to support such a change. Aware of the evidence and taking into account the principles of transition Southampton Children’s Hospital have developed and implemented a Trust wide transition programme called Ready Steady Go. It is a generic programme for YP with a long term condition aged 11+ years. It can be used across all sub-specialties. Ready Steady Go is a structured, but where necessary adaptable, transition programme. A key principle throughout Ready Steady Go is ‘empowering’ the YP to take control of their lives and equipping them with the necessary skills and knowledge to manage their own healthcare confidently and successfully in both paediatric and adult services. This is done through completion of a series of questionnaires addressing knowledge of their condition, self-advocacy, healthy lifestyle, sexual heath, pregnancy, education/vocation, psychosocial issues and the concept of transition itself.

Ready…

Steady…

Go…

Learning Disability Patients Where the young person has a learning disability the parent/carer also works through the Ready Steady Go questionnaires with the YP engaging as much as possible. This prepares the carer’s for the move to adult services; the programme allows all concerns/issues to be carefully addressed and progress monitored prior to transfer.

Capacity is the ability of an individual to make a decision What is Capacity? Capacity is the ability of an individual to make a decision Decision making can be affected by a cognitive impairment An appropriate professional should assess capacity It is decision and time specific

Assessment of capacity A person is deemed to have capacity if they are able to: Understand Retain Use or weigh up Communicate

What is the Mental Capacity Act? Mental Capacity Act 2005 – legal Framework within in England and Wales Aged 16 and over Legally an adult at 16 with regards to health Parents can no longer sign the consent form Provides a safeguard for people lacking capacity It puts the individuals at the heart of the decision

Best Interest Meeting Carers and parents are the experts, we need your opinion to make the right decision Once a plan is in a place, we don’t need to keep discussing it

How does this impact on transition? Transition process takes place between the age of 14 to 18 years old. Benefits are transferred into the individuals name at the age of 16. Social worker assessments for future placements. Transfer to college/day centre depending on the individuals abilities. Residential care may end. The main issue from the age of 16 is that their parents cannot consent for their children. The child has to consent for him/herself. This includes people with learning disabilities!

Salford Royal Service First appointment Contact details Nurse input – Contraception, sexual health, relationships, smoking, alcohol, drugs, consent, care plans, hospital passport As an adult service, our purpose is to provide you with the information you require and give you the options so that you can make an informed choice about your healthcare.

AQuA

To Summarise Transition is a gradual process You are at the centre of it Aim to develop independence Support learning Management of condition

To Summarise The process is adapted for those with learning disabilities Families are included in the best interest meeting YOU are the expert, we need your input Start your research, know your rights! If you are concerned talk to your doctor/nurse

You are the patient

Thank you for listening Any questions?