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

3. What is transition?

4. 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

5. 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?

6. 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?

7. 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

8. 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

9. 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

10. 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 

11. 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.

12. Ready…

16. Steady…

17. Go…

18. 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.

19. 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

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

21. 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

22. 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

23. 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!

25. 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.

26. AQuA

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

28. 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

29. You are the patient

30. Thank you for listening
Any questions?