11/06/2024 Peer support and social prescribing for children and young people with diabetes in the Surrey Heartlands

Hear from Julia Newman, Children and Young People Long Term Conditions Transformation Lead, Surrey Heartlands ICB and Nicola Wood, Transformation Lead Women and Children’s Commissioning, Surrey Heartlands ICB. They discuss how peer support and social prescribing for children and young people with diabetes and their families can enable wellbeing, belonging and improve health outcomes.

• Effective collaboration across the ICS plays a crucial role in supporting initiatives that clinicians feel are beneficial for CYP. Their involvement and enthusiasm are very important, clinician buy-in is important, as without their support, events cannot be held safely or effectively.
  
  
• CYP with diabetes live and thrive within broad communities and education systems. As such, it's important not just to engage from a health care perspective, instead the entire ICS must be engaged to ensure holistic needs of CYP are met and to deliver effective programs.
  
  
• Support should be brought to the places where children spend time and to where they feel most comfortable. It's important to strive to make clinical environments more accessible and welcoming, mirroring these comfortable settings to better serve CYP.

National research by The Royal College of Paediatrics and Child Health reported that CYP wanted increased awareness of long term conditions to reduce isolation in society. Research discusses parents developing post traumatic stress disorder after their child's diagnosis, with long term effects of up to two years and CYP having a higher likelihood of developing anxiety related to their condition post diagnosis, due to trauma. Research also discussed the increased likelihood of death following transition into adult care, with lack of engagement in clinical services in young adulthood being a factor.

Clinicians reported CYP and families experienced high anxiety at the time of diagnosis and on-going anxiety in managing diabetes. Services had experienced difficulty in recruiting psychological support for CYP with diabetes, with 2 out of 4 services having Psychologists in post. Clinicians reported experiencing challenges in supporting CYP with their mental health and wellbeing needs as well as the need for support to prevent mental health needs arising. Peer support and the need for belonging had been routinely asked for by CYP and their families.

East Surrey CYP Diabetes services reported increasing levels of suicide and self-harm in adolescence. All services reported decreased engagement in clinical services during adolescence and transition into adulthood. Adults services reported diabetic foot ulcers and amputations in young adulthood and that with improved management of diabetes during adolescence, young adulthood and through transition it would decrease the need for amputations.

CYP experiences were obtained from speaking with CYP and their families. CYP in Surrey Heartlands had reported anxiety in managing diabetes and feeling isolated from their peers both socially and in school. They reported being unable to go to sleep due to anxiety that they might have high or low blood sugar during sleep, having to inject insulin in school toilets as they did not have access to a safe place, being told off at school for having snacks to manage their condition and missing social occasions and sports with peers due to their blood glucose levels being too high or low. Parents expressed that they were unable to sleep for fear of their child needing urgent care during the night, many had stopped working in order to care for their child full time. Even when at school, they needed to remotely check on blood glucose levels, or answer school queries to support their child.

Clinical benchmarks of care:

• Warrington and Halton Teaching Hospital CYP Diabetes Service featured in a Royal College of Paediatrics and Child Health review piloting Youth Workers in their service and had found improved management of diabetes.
• Leeds Teaching Hospital had developed a Youth Worker team for CYP with long term conditions, showing improvements in engagement in transition into adult care and improvements in engagement with care processes with the clinical team. This had been achieved through peer support programs, Youth Worker supported transition clinics and education sessions with the clinical teams.
• Southampton Hospital had reported that their in-house long term conditions social prescribing service had been effective.

The NHS Core20PLUS5, an approach in reducing health inequalities identified that a community outreach approach reduces barriers to those living in deprivation and/or multiple disadvantage.

Peer Support Event:

We Co-produced and co-designed a peer support two day event with Diabetes UK Together Type 1, Diabetes UK Young Reps, Surrey Youth Worker Service, Surrey Heartlands ICB, CYP Diabetes service clinicians (consultants and Diabetes Specialist Nurses) and East Surrey Place.

Young people with Type 1 Diabetes aged 11-16 were invited to attend a peer support event at the Surrey Youth Worker Service Youth Haven in Epsom. It gave them the opportunity to meet other young people with the same condition and take part in social prescribing based activities to build relationships and explore their emotions around diabetes. A social model education approach helped them explore and manage their relationship with their condition and their support network. Activities included cooking supported by Youth Workers and a Diabetes Dietitian, a graffiti workshop, playing pool and table tennis to build relationships. Diabetes UK held a Tree of Life workshop to support wellbeing and explore emotions. A co-production workshop was held to enable young people to co-design peer support services to take forwards after the event.

During the co-production workshop, CYP discussed their experiences of stigma and lack of awareness or knowledge in school, impacting their wellbeing. This ranged from teachers shouting at them for using their phones when managing their condition and being excluded from a class for having a snack to manage their blood glucose levels. They felt their peers did not understand, commenting that missing P.E because they had high blood sugar is 'really lucky'. They also felt that their life couldn't be spontaneous and that everything has to be planned. Their word for their diabetes was ‘annoying’.

The peer support event was held within the community, following best practice/research evidence and enabled our CORE20 and Plus groups to participate. We undertook co-production with CYP to develop support which is inclusive of young people. We also worked with Surrey Youth Worker Service, who are trained in working with CYP who have experienced the criminal justice system and/or mental health crisis because they have the relevant skill set and expertise in meeting the needs of these young people.

Transition clinics:

We are also piloting a social model alongside our medical model of care in our clinical services by having Youth Workers present in transition clinics. This approach aligns with best practices showing that a social model of care can effectively engage adolescents and young adults with clinical services. It provides a personalised, needs led and flexible approach to care. The Youth Worker has been available in the clinic to have a chat with those going through the transition process from paediatric services to adults. This can be a precarious time where adherence to medical management decreases and clinic attendance can decline. Once the Youth Worker has met the young person in the clinic setting if future engagement is desired, this would be held away from the hospital in a community setting of their choice. The Youth Worker community support is able to offer activities including music, dance, cookery and green social prescribing to promote physical and emotional wellbeing and explore emotions around managing their condition.  

This approach supports CORE20PLUS5 in promoting outreach to CYP and their families in the community, at school, within their homes, or local community centres.

• Not all clinical teams across Surrey Heartlands were able to support the event due to their clinical capacity.
• Transition clinic attendance levels were low for clinic appointments and getting a private space for the Youth Worker to have conversations in was not possible on an ongoing basis.
• We have fantastic relationships between Surrey County Council, Public Health, education, health, voluntary sector and ICB/ICS teams, with engagement from across the system. It has taken a village to form this support and demonstrates the need for buy in and a collective aim of positive outcomes for our children with long term conditions.

Clinicians reported feeling that there were improved relationships between the children who are in the care of their services and themselves following the event. One clinician reported that a teenage boy in her care had been experiencing difficulties in managing his condition and had not been routinely attending appointments. She felt that the event helped her to build a more positive relationship with the boy, helping her to understand him and his feelings. 

CYP all reported that they had enjoyed the event and would like to have more peer support events and routine peer support. They discussed that they would like monthly peer support and occasional events. CYP who attended decided to exchange contact details, helping to create their own support networks.

CYP attending transition clinics have been offered one to one support with Youth Workers within the community to build support according to their needs.

The young people expressed an interest in meeting up at a venue such as the Youth Haven monthly or bimonthly after school. They were also interested in less regular days during the holidays where an activity is provided such as cooking, laser tag or a visit to a theme park.

We would like to engage more young people to become young leaders for Diabetes UK to help support with co-production of services and be the voice of CYP living with diabetes. This would also help them to develop useful life skills that could support with their university applications or awards such as the Duke of Edinburgh Awards.

We are planning to refocus talks on having youth workers in paediatric clinics as opposed to transition clinics. This may be more successful as there will be a greater number of patients attending. It might be more effective to engage the young people before the transition phase, so they are aware of the role and benefits of Youth Workers, meaning they are more likely to seek out support during difficult times. Additionally, there is more space where the clinics are run in paediatric department to allow for private conversations between young people and Youth Workers. 

Find out more about CYP diabetes in Surrey Heartlands and Diabetes UK, Together Type 1 programme for young people.