Young Adult Experiences and transition from CYP to adult services #YAExp #BartsHealthYA #ExpofCare #YVS19

26/4/19

I never cease to be inspired by young people, young adults, and it was Hannah a wonderful paediatrician (@HLB27) who kindly emailed me late on Wednesday evening reminding me teenagers ‘are young adults whose brain is developing and are trying to figure stuff out’. When I shared this with my 15 year old daughter she said ‘tell Hannah thanks, that’s exactly it’ impressive feedback! Mike Farquhar (@DrMikeFarquhar) this week encouraged us to ‘be the person you needed when you were young’ to which Arvind Nagra (@arvnagra) highlighted that all young people need someone to connect with, someone to trust, it was Kate Martin (@_Common_Room) who reinforced that often securing that trust takes time, and young people don’t want us to give up on them.

NHS England in collaboration with the ‘I Will Campaign’, the RCPCH and the Youth People’s Health Partnership with amazing organisation from Nagina Javaid (@nagina_j) ran an important youth voice summit with over 100 young people this week, about what mattered most to them in health care, transition and young adult care was a key theme, take a look at #YVS19 for tweets. It was wonderful to have the support of Simon Stevens and Ruth May, both committing to ensure young people’s views inform the work of the Children and Young People’s Healthcare Transformation Programme as the NHS Long term plan is brought to life.

We’ve also been talking about this issue at Barts Health too, the medical board and the children’s board, along with GPs are working collaboratively to improve transition and young adult experiences. Take a look at tweets from our conversations at #BartsHealthYA.

‘Transition’ is defined as the process of moving from children’s to adults’ services, which includes initial planning, the actual transfer between services, and support throughout. But we also need to focus on ‘young adult experience’ #YAExp especially for those who ‘crash land’ into adult services and may not have had the support of Paediatric services.

NICE Guidance on transition asks us to:

1. Involve young people in the design of services, sharing that co-production is key.

2. Ensure we’re considering the developmental level of young people and delivering appropriate care.

3. Identify support beyond the family network, thinking about youth worker roles.

4. Take person centred approaches and involving primary care, so often GPs have been left out of a young person’s care, but this changes when care is then provided by adult services.

5. Foster collaboration between health and social care managers.

6. Think creatively about the value of peer support and the value of technology.

Importantly NICE ask us to pay particular attention to young people with neurodevelopmental disorders; cerebral palsy; challenging behaviour, or who are being supported with palliative care who are most in need of ongoing support, I’d also add young adults from a BAME background need focus too, as they often report poorer experiences of care https://www.nice.org.uk/guidance/ng43/chapter/Recommendations#overarching-principles

We held an event at Barts Health last summer and the wonderful Beci Ward captured what young people wanted from adult services in the graphics below, they asked:

1. For us to be welcoming

2. To involve them in decisions about their care

3. To focus on building trust and keeping them safe

4. To remember how scary it is to be a young person

Another piece of work by teams providing care for young adults identified the following themes as areas that require ongoing focus……

It feels that whilst we’ve been talking about transition for many years, action is taking place. The support from the Roald Dahl Marvellous Children’s Charity supporting transition clinical nurse specialists has been invaluable in building the capacity to focus on this agenda. Follow @nellyfletch71 @angy_wangy1 @SophieDziwinski @RoaldDahlFund for more information.

Perhaps though the most powerful message of the week came from Katie, a young person who spoke to us about her reflections on transition and moving into adult services, her one ask? ‘Please listen to me… I know what works and what doesn’t‘

…. is that really such a big request?

A post blog note: the RCPCH have brought together transition resources that are worth dipping into https://www.rcpch.ac.uk/resources/health-transition-resources