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The Listen Group: Young people’s participation in Barking and Dagenham

With thanks to Grainne Curran and the Listen Group at Barking and Dagenham Child and Adolescent Mental Health Service (CAMHS), North East London Foundation Trust (NELFT).

Download this case study.


Background
Barking and Dagenham CAMHS has prioritised young people’s participation by forming a participation group to advise and co-develop changes to the service. Whilst considering how to implement the THRIVE Framework (Wolpert et al., 2016), Barking and Dagenham CAMHS realised that it would be crucial to involve young people in changes to service design. Therefore, the Listen Group was revived in October 2017, with the help of a local bursary scheme set up to support the implementation of THRIVE.

The Listen Group meets on a half-termly basis. A specific focus is identified, which changes over time, and new participants are recruited to ensure a wide breadth of young people across the service are able to input into the service design.

The i-THRIVE in NELFT team spoke to Grainne Curran, Art Psychotherapist and facilitator for the Listen Group, along with members of the Listen Group to hear more.

What did you hope to achieve?
Grainne Curran: There were several topics we wanted to get young people’s views on. Our initial priority was the creation of a self-referral pathway. We wanted to make sure the pathway would enable young people to access the service in a way that met their needs.

What happened?
Grainne Curran: We held three workshops which focused on helping the young people to think about, explore and begin to design a self-referral route into the service. The young people were made aware that the self-referral route would be designed in collaboration with clinicians and the leadership team. We had a range of interactive activities to help us think and explore this topic. We also had a “Park it” board where young people logged any thoughts, feedback and/or questions which were not directly related to self- referrals. This ensured that ideas wouldn’t be lost and could be picked up as a focus at a later point. We first asked the young people to map out the ideal self-referral route into CAMHS if there were no barriers and anything was possible. They came up with 3 options:

  • Online form
  • Phone in to speak to a clinician
  • Drop In

The group discussed pros and cons and began to flesh out details.

The young people described their own journeys into CAMHS. Two of the young people described feeling like they had to get worse before they were accepted, having had referrals rejected initially. They described the negative impact of escalation on their mental health, feeling dismissed, feeling worried that this was normal and that they could not be helped. All of the young people felt that having the option of a self-referral route could have helped them to have a more straight forward route into Getting Help, cutting out having to tell their story multiple times to different people who they felt were not equipped to help them.

To gather the views of young people across the service, the Listen Group designed a SNAP online survey. This was open for a month, and was completed by young people whilst they waited for appointments in the waiting room. The Listen! Group then analysed this data to inform their recommendations to the CAMHS leadership team.

Barriers to accessing CAMHS when there is no self-referral route
The young people identified several barriers to accessing the service which a self-referral route would help to address, including:

  • Having to wait for a GP to make a referral, for example: waiting for a GP appointment, waiting for the referral to be sent, and not knowing how long before they would hear back
  • Having to be 16 years old to make a GP appointment without a parent, thereby hindering under-16s from being referred to CAMHS without parent knowledge
  • Not wanting to tell family members about being referred to CAMHS because of fear of upsetting them, or in some cases because the family contributed to their difficulties
  • Not wanting to talk to the GP as they know their parents
  • Fearing that problems are dismissed as “normal adolescence” by non-mental health professionals
  • Dealing with everyone else’s worry

Proposed changes to the service
Following the recommendations from the group, the service put two of the three preferred options into practice.

First, they set up a process whereby if a young person called the service, they would be put through to the Service Lead or clinician on duty. This clinician would then ask the young person questions over the phone and give the young person advice on next steps there and then.

Secondly, they began designing an online referral form to coincide with a website redesign being undertaken for all of NELFT’s CAMHS services. The website went live in September 2018.

So far, the phone line has not been well-used by young people. However, the service is hopeful that the publicity associated with the website re-launch will help more young people to become aware of the phone line option. There is further technical work required to get the online form linked to the single point of access to make this an accessible and viable access route.

Young people’s feedback on the Listen Group
The i-THRIVE in NELFT team spoke to young people in the second wave of the Listen Group to find out how involved they felt.

What changes would you like to see in the service?
Young Person 1: There are of things that can be improved. For example, making the website more colourful and including information about how to cope with your difficulties. Also, improving the first experience you have of the services e.g. receiving a phone call rather than a formal letter when you first come, filling out questionnaires after meeting the therapist rather than before, or seeing a photo of your therapist before you meet them.

Young Person 2: It’s important to feel comfortable. When I first started coming here, I was really anxious and nervous. Then when I got here, I was just like, okay, this is where I’m going, and then when I actually met the person I was fine. So it took some getting used to, but, I got used to it in the end.

How listened to did you feel in the Listen Group?
Young Person 1: Very listened to. They took all our ideas on board … they wrote them down and they’ve put them on the wall, and that might mean something like they’re trying their best to change it.

Young Person 2: I’m never listened to, so actually being listened to is a first for me, from a personal point of view, so, I’m glad.

How confident do you feel that the change you are suggesting will be made?
Young Person 2: It’s all possible within reason, I believe. It is all possible if you’ve got the right equipment and the right people. It is all possible.

Grainne Curran: Barking and Dagenham CAMHS has a rich history of working with young people to improve our services, establishing the service user group Listen! in 2011 alongside young people using mental health services. The recent self-referral project has been exciting to work on as we are seeing young people’s ideas being taken on board and converted into action: a co-designed self-referral route. The second wave of workshops are looking at those first contact points from receiving your appointment letter to your first appointment, how to make these vital first experiences of CAMHS as helpful and comfortable as possible for the young person and their family. Our most recent group focused on those first points of contact and the young people produced an action plan which will be brought to the Service Lead and discussed within the team meeting. This action plan seems very achievable to me. We are also excited to be consulting on the ‘We Can Talk’ A&E training and advising on transition surveys.

Future plans
The Listen Group’s self-evaluation produced some positive results. Young people reported that:

  • The activities were useful to help them get their opinions across
  • They enjoyed the experience
  • They were confident that their opinions may impact change
  • They felt listened to

The Listen Group’s self-evaluation:

Two more waves of the Listen Group are planned using the funds Barking and Dagenham CAMHS won as part of the i-THRIVE in NELFT participation bursary.

In summary:
The service user participation group feedback to the CAMHS team has enabled an improved level of supportive interventions provided to children and young people. Feedback from the group has helped to shape the Children and Young People’s self-referral system and the running of psycho-educational groups such as Emotional Regulation, Mindfulness and Non Violent Resistance. These groups have supported the embedding of the THRIVE Framework principle of early help within Barking & Dagenham CAMHS.

Increased use of the framework has encouraged the team to reflect on and adopt new ways of thinking within the Multi-Disciplinary Team meetings on how to improve the existing pathways in an effort to make patient flow and processes smoother and more time efficient. Another gain for the team has been the reduction of missed appointments, with the number of young people benefitting from the services being shown to have increased especially in the ‘Getting More Help’ needs based grouping of the THRIVE Framework.

CAMHS service interventions have been reported to be increasingly more effective according to the feedback from parents and guardians. This is supported by fewer presentations of young people to local Accident and Emergency Departments and “in crisis” admissions to the local Home Treatment Team. There is tangible evidence of collaborative working partnerships with CAMHS and local stake holders such as schools and social services and GP surgeries – with the Team increasing their presence within local schools and inviting social workers into case discussion meetings in an effort to offer a whole system approach to complex cases.

Feedback from the service user participation group has been implemented to encourage closer collaborative working with other professionals around the child, in terms of identifying and mitigating risk, offering effective support, appropriate signposting of young people and the offer of advice to young people, their families and health provision partners such as primary care services. This ultimately means that CAMHS efforts are targeted appropriately and interventions achieve the desired outcomes across the spectrum.


If you would like further information, please contact Heather Kazingizi-Kapota at heather.kazingizi-kapota@nelft.nhs.uk.

Written January 2019.