Tracey Hartley Smith - Clinical Lead for C&YP learning disability services in Wirral

Hi there, I’m Tracey

Here goes with my first blog! Just a little background about me first… I’m a proud learning disability nurse and Community Specialist Practitioner. I am the clinical lead for children and young people’s learning disability services in Wirral; part of Wirral CAMHS.

I’m currently seconded part time to the NHSE QI taskforce – children and young people’s mental health, learning disability and autism inpatient services. I’m a very proud mum to 2 wonderful grown up (nearly…) children, and live in Lancashire with my partner, affectionately known as ‘the Welsh Bear Grylls’. I decided the focus of my first blog would be transition for young people with learning disabilities.

Tracey Hartley Smith

"Parents/carers of young people with learning disabilities and complex needs play a pivotal role in the young person’s on-going care and support needs."

Transition in the time of Covid! Transitioning from child to adult health services can present several challenges for young people and their families, due to biopsychosocial factors and changes in the continuity of care delivered. The transition challenges for young people with learning disabilities and their parents/carers can be even greater.

Parents/carers of young people with learning disabilities and complex needs play a pivotal role in the young person’s on-going care and support needs. Therefore, it is essential that professionals understand parent/carer experience of transition, to ensure we respond to their needs.

Last year we undertook a small, local research project; parents were interviewed about their experience of their young person’s transition. Parents’ responses were explored, and transition themes were generated. It was evident that parents’ experience of transition from CYP learning disability services to the Adult CLDT was complex, challenging and highly emotional at times.

Examples of the themes that emerged from the interviews included:

• Parents acting as advocates during a time of emotional challenges

• Parents not being aware that their young person was in the process of transition, hence a sense of confusion and uncertainty.

• Parents feeling the need to ‘fight’ for coordinated multi-agency support for their young person, leaving them feeling exhausted and overwhelmed, while continuing to attempt to support their young person’s needs.

This learning has helped us to develop a set of standards for young people transitioning from CYP Learning disability Services to adult LD services and we’re currently working to implement these standards.

I therefore wanted to share a recent experience of supporting one young person and his mother through transition.

Josh (not his real name) is an inspirational young person, who was approaching his 18th birthday.

Despite the challenges he experiences he could clearly articulate the type of support and type of future he wanted. He has agreed to me sharing this account. As a children and young people’s learning disability nurse I was working with Josh and his mum with regard to his mental health and emotional wellbeing. My offer of psychoeducational support was met with a clear ‘thanks but no thanks’.

Josh explained that actually that was not the kind of help he wanted, “I need help to get work experience and a job, doing something I’m interested in, I want to learn to drive and have a great future!” (paraphrased). We discussed Person Centred Reviews; rather than the usual type of transition meetings we could hold a person-centred review to think about what should happen next for Josh. He thought this sounded like a good idea. We went out and found a really cool venue, Josh planned the music, the snacks – a chance for Josh to experiment with veganism.

Josh decided who would attend. Although the first lockdown initially curtailed these plans, by September there were some lifting of restrictions and re-opening of venues and we were able to hold a smaller Person Centred Review, still at the cool venue, but other people that Josh hoped would be in attendance; school, CLDT nurse, adult social worker and his respite foster carers joined by video.

The review was a success; Josh was proud to lead the meeting, to hear what people liked and admired about him. Josh described what was working and what wasn’t working, his hopes and wishes for the future and what the best support ever would look like. But of course, we can only say it was successful if the outcomes, the hopes and wishes, the best ever support actually happen for Joshua.

I caught up with Joshua and mum again this month, the adult community learning disability nurse joined us to be introduced and describe to Josh and mum they type of support they can offer should it be needed. It was wonderful to hear that Josh had a place at the college he wanted to go to, doing the course he wanted to do, and work experience was planned for after lockdown.

Josh is now having driving lessons. So, a fantastic outcome for Josh, and what a privilege, as a children and young people’s learning disability nurse to have the chance to work so holistically, flexibly and creatively.