Chat Summary

Thank you to everyone who took part in the chat. It was very thought provoking and dynamic with lots of engagement.

Question 1: What are the main differences between CYP and adult services?

• Open visiting on children’s wards (@cdodd09)
• Knowledge and skills, lack of parent support, young people facilities (@hardcastle76)
• The holistic, family-centred care that children’s services offer, whereas adults focus on the patient (@robbradley01)
• There’s no generalist co-ordination other than GP. All services are disease specific (@hepworth_becky)
• Adult services are patient-centred, but not in the same way. Adultsstruggle with the QOL-focus (@LucyAlexandria)
• CYP services are patient-centred, ‘whole person’ care, far more supportand family-feel. Adult services you’re a drop in the ocean (@LucyAlexandria)
• Adults understanding the whole picture and allowing carers to support more. Taking the time to discover young people’s goals and not just their medical needs would be a way to help (@LucyAlexandria)
• Heard positive example today in Nottingham; children and adult cont careworking together 16 onwards (@hardcastle76)
• I feel a burden in adult services, never felt that in paeds. I haveamazing teams who work with me, help me achieve desired QOL (@LucyAlexandria)

Question 2: How can families and nursing staff help a young person feel ready for the change to adult services?

• Discuss with the YP what it’s goingto be like, paeds nurses the patient knows going with them to 1/2 adult serviceappointments (@robbradley01)
• Prepare as early as possible. Involving YP in care and decisions. Working on skills, build up confidence. Show them they have a voice (@LucyAlexandria)
• Prepare them for the change, explain, educate (in language or communication methods suitable for that YP), ensure they’re ready (@LucyAlexandria)
• Everyone needs guidance and support and someone to signpost when needed (@cdodd09)
• Discuss with theYP what it’s going to be like, paeds nurses the patient knows going with them (@jmc_julie)
• Work with the adult side to explain needs so nurses aren’t so worried. Map pathways so YP know who to contact for what (@NinaHeighington)
• We work through‘Ready, steady go’ questionnaire, starting at age 14 to prepare them and encourage independence (ROHNHSFT) (@cpea88)
• Start early,encouraging YP to take more responsibility and involve GP (@hepworth_becky)
• Self-advocacy is a skill to be learnt. Confidence is slowly gained. Independence takes time and support (@LucyAlexandria)

Question 3: What are some of the main difficulties and concerns that families face during transition?

• Very difficult for parents to let go when they have managed care needs for a long time (@hepworth_becky)
• YP needs to be empowered to have control in appointments (@MissLucyMay)
• YP struggle to say to parents they don’t want them there, fear of arguments or upset (@MissLucyMay)
• Have met YP who take meds ‘because that’s what they’re told to do.’ No idea why (@MissLucyMay)
• Fear of the unknown, change to a different environment, potentially less contact from the team (bradley_juliet)
• Surgery after 18 was on adult wards and was a lot different (@robbradley01)
• Move from familiar and trusted professionals and ‘where will I be admitted when I’m ill?’ (@hepworth_becky)
• Picking up the phone and networking with adult colleagues helps and making the case for how things need to change (@NinaHeighington)
• I don’t remember any conversations with me around going to adult services (@robbradley01)

Question 4: What are some ways that you have encouraged a young person to become independent and involved in their health care?

• Let them lead discussions regarding future of care on their terms (@hepworth_becky)
• I have encouraged a YP to begin doing their own repeat prescriptions for their medications. One small step (@MissLucyMay)

Question 5: what are the key words that you associate with a successful transition?

• Communication, preparation early on, support YP and their family through the transition (@robbradley01)
• Empowered (@MissLucyMay)
• That the young person has been ‘involved’(@MissCherBear)
• Start early and gently (@hepworth_becky)