Transitioning from child to adult cleft lip and palate services in the United Kingdom: Are the NICE Guidelines reflected in young adults’ experiences?

Figures & data

Table 1. Summary of the NICE guidelines (NICE, 2016).

Overarching principles	Involve young people and their carers in transition-related service design, delivery and evaluation (including co-production of transition policies and strategies) (1.1.1) Ensure transition support is developmentally appropriate (1.1.2) Ensure transition support is strengths-based and that goals are set for the young person (1.1.3) Use person-centred approaches such that the young person is an equal partner in their care and treatment (1.1.4) Ensure primary care (i.e. GPs) are in place for the young person (1.1.8)
Transition planning	Ensure transition takes place at a relatively stable time in a young person’s life (1.2.3) Ensure the transition planning takes into account each young person’s capabilities, needs and hopes for the future (1.2.3) Hold an annual review meeting to review transition plans with the young person and their health/care team (1.2.4) Involve all practitioners providing support to the young person and their family or carers, including the GP (1.2.4) Help the young person to identify a single practitioner – who should act as a ‘named worker’ – to coordinate their transition care and support. This named worker should support the young person and their family throughout the transition period for as long as is felt appropriate. (1.2.5-1.2.9) Offer young people opportunities to access peer support, coaching or similar to help them engage with their transition into adult care (1.2.11) Ensure young people are supported to manage their condition through assessment of self-confidence and readiness to take control of health and care decisions. (1.2.17) Ask young people how, and to what extent, they want their guardians to be involved in their transition to adult care. (1.2.19) Speak to guardians about transition such that they know what to expect and what support is available. (1.2.20) Help young people develop confidence in working with adults’ services by giving them the chance to raise any concerns and queries separately from their parents or carers (1.2.21)
Support before transfer	Service managers to ensure that the young person meets someone from their adult team before they officially transfer from their children’s team (e.g. in a joint appointment) (1.3.1) Contingency plan to be in place in case of the named worker leaving their role (1.3.2) Consider working with the young person to create a ‘personal folder’ including information about themselves and their treatment, any care plans and any needs, that the young person keeps and takes with them to adult appointments. (1.3.3) Young people and their guardians should be given information about what support is available to them from adult services and how to access it. (1.3.4)
Support after transfer	If a young person has moved to adult services and does not attend meetings or appointments, attempts should be made to contact the young person and re-engage with them by the named worker. (1.4.1) Ensure that the young person sees the same healthcare practitioner in adults services for the first 2 attended appointments after transfer from children’s services. (1.4.4)
Supporting infrastructure	One senior executive and one senior manager should be appointed in each health and social care organisation to develop and oversee the implementation of transition protocols (1.5.1) Consider establishing integrated forums for young people to provide feedback on current transition protocol and highlight any gaps. (1.5.5)

Table 2. Summary of semi-structured interview guide. Questions are mapped onto each NICE recommendation.

Question	NICE Recommendation
How much were you involved in your care while you were growing up?	1.1.1, 1.1.2, 1.1.3, 1.1.4
What – if anything - do you feel the cleft team did to involve you in your care while you were growing up?	1.1.3, 1.1.4
How much are you involved in your care now?	1.1.2, 1.1.3, 1.1.4
If applicable - what are the main differences between the involvement you had as a child and the involvement you have now?	1.1.2, 1.1.3, 1.1.4
What – if anything - do you feel the cleft team do to involve you in your care now?	1.1.3, 1.1.4
Do you feel like you have enough information and support to manage your own cleft treatment moving forward? If you need any more information in the future do you know where to get it? Where would you go?	1.1.3
How old were you when you felt like you became more involved in your cleft treatment?	1.2.1
Did you feel prepared to manage your own treatment at that time? If no, why not? If yes, what helped you to feel prepared?	1.2.3
Has anyone ever asked you how you feel about making these decisions? If yes, who, when, how? Was this reviewed at any point?	1.2.4
What has been your experience of other health professionals outside of the cleft team during this time in your life, for example your GP, your dentist?	1.2.4
Have you ever been allocated a named person (a nurse, for example) to be your port of call if you have any questions or concerns about moving from child to adult cleft care?	1.2.5
Would having a named person have been helpful for you? What would they have been useful for?	1.2.5
Did anyone else support you with your move to adult care? (e.g. GP)	1.1.8, 1.2.5
Have you ever been offered support from CLAPA or another young adult with cleft to help you move to adult care?	1.2.11
Has anyone ever helped you to share your views at moments when you found it difficult to understand your care or found it difficult to speak up?	1.2.11
Have you been given the option of using mobile technology, apps or email to stay in contact with your cleft team?	1.2.12
When you move/moved from child cleft services to adult services, will you be/were you given a way to stay in touch with key people and/or networks you had growing up?	1.2.13
Has your cleft team/CLAPA mentioned any peer support opportunities to you (chances for you to speak with other young adults impacted by cleft about the transition process or treatment in general?	1.2.15, 1.2.16
Have you ever been asked if you’re comfortable with your parents being involved in your treatment choices/coming to appointments with you? How do you feel about your parents’ involvement?	1.2.19
Have you been given the opportunity to ask questions or raise concerns without your parents being in the room with you?	1.2.21
Do you feel your wishes about your parents’ involvement has been listened to and respected?	1.2.22
If the child team is different from the adult team, did you meet anyone from the adult team before you moved?	1.3.1
Were you given any information about your past treatment, your medical records or your cleft ‘journey’ in preparation for you moving into adult cleft services?	1.3.3
Did anyone ever discuss with you what the main differences are between child cleft services and adult cleft services? (E.g. signing your own consent forms, making the decisions around treatment yourself, being ‘in control’ of what happens to you and when, being in a different hospital)	1.3.4
If applicable, since you have ‘transitioned’ to adult care (turned 16), would you say your care has been consistent? Have you seen the same people each time?	1.4.4, 1.4.5
If you’ve missed any appointments, have they followed up with you? Has your named worker (if applicable) ever been in touch?	1.4.1, 1.4.2, 1.4.3
If the participant has not engaged in any cleft services since they ‘took control’, askHas anyone been in touch with you from the cleft team to check that you do not want any further treatment, and to let you know how to contact them in the future?	1.4.1, 1.4.2, 1.4.3
Overall, do you feel like the move from child to adult cleft care has been successful for you?	Rounding off
What advice would you give to a young person approaching the age at which they can make their own decisions about treatment?
Overall, do you think there is anything that could have been done better? What advice would you give to health professionals who would like to help make the move from child to adult cleft care easier?

Table 3. Summary of results: which of the guidelines relevant to CL/P care were met, partially met or not met?.

NICE Recommendation	Met	Partially met	Not met
Overarching principles
Involve young people and their carers in transition-related service design, delivery and evaluation (including co-production of transition policies and strategies)	1	0	14
Ensure transition support is developmentally appropriate	4	3	8
Ensure transition support is strengths-based and that goals are set for the young person	7	5	3
Ensure transition support uses person-centred approaches such that the young person is an equal partner in their care	7	5	3
Ensure a GP is in place for the young person	10	5	0
Transition planning
Ensure transition takes place at a relatively stable time in a young person’s life	N/A^1
Ensure the transition planning considers each young person’s capabilities, needs and hopes for the future	5	4	6
Hold an annual review meeting to review transition plans with the young person and their health/care team	0	3	12
Involve all practitioners providing support to the young person and their family or carers, including the GP [and dentist]	0	0	15
Help the young person to identify a single practitioner – who should act as a ‘named worker’ – to coordinate their transition care and support.	0	0	15
Offer young people opportunities to access peer support to help them become involved in their transition planning	4	0	11
Ensure young people are supported to manage their condition through assessment of self-confidence and readiness to take control of health and care decisions	0	0	15
Ask young people how, and to what extent, they want their guardians to be involved in their transition to adult care	1	0	14
Speak to guardians about transition such that they know what to expect and what support is available	N/A^2
Help young people develop confidence in working with adults’ services by giving them the chance to raise any concerns and queries separately from their parents or carers	7	0	8
Support before transfer
Children’s and adults’ service managers should ensure that a practitioner from the relevant adult services meets the young person before they transfer from children’s services. This could be by arranging joint appointments or running joint clinics.	7	0	8
Contingency plan to be in place in case of the named worker leaving their role	N/A^3
Consider working with the young person to create a ‘personal folder’ including information about themselves and their treatment, any care plans and any needs, that the young person keeps and takes with them to adult appointments	0	0	15
Young people and their guardians should be given information about what support is available to them from adult services and how to access it	4	0	11
Support after transfer
If a young person has moved to adults’ services and does not attend appointments, adult care should follow up with the young person.	0	0	10^4
Ensure that the young person sees the same healthcare practitioner in adults’ services for the first 2 attended appointments after transfer from children’s services	2	4	7^5

¹This was N/A as participants could not identify a time where ‘transition’ had happened. ²This was N/A as parents were not interviewed. Young adults were unsure if their parents had been spoken to about transition. ³This was N/A as no participants had a named worker. ⁴for 5 participants, this question was not applicable, as they were currently in active contact with their cleft teams at the time of interview. ⁵For 2 participants, this question was N/A as they had never attended appointments as an adult.

NICE. (2016). Transition from children’s to adults’ services for young people using health or social care services. https://www.nice.org.uk/guidance/ng43

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