Young people living with bipolar disorder and their families are shaping the future of services provided in the North East having shared their “vital” expertise to help improve NHS support.
More than 30 delegates took part in an engagement day at the Adolescent Bipolar Service (ABS), a service provided by Northumberland, Tyne and Wear NHS Foundation Trust at Walkergate Park in Newcastle.
The service provides second opinions for young people living with bipolar disorder and their families across the whole of the United Kingdom with most referrals coming from North of England and Scotland. Current and former service users and their supporters were invited to join, with some coming from as a faraway as Dundee and Carlisle to offer their expertise.
This event, held in partnership with Bipolar UK, was the first of what is hoped to be many engagement days at the service. It allowed families a safe space in which they could provide vital information and feedback on how ABS can best support them.
Some of their suggestions will be brought in with immediate effect and the service will focus on making further improvements so staff can provide the best support possible for the people they serve.
Patient engagement is ‘vital’
Consultant in child and adolescent psychiatry Dr Aditya Sharma said: “We have always thought that patient engagement was important, but this event has taught us that actually it is absolutely vital.
“We have learnt so much from our young people, their families and supporters about their journeys and they are teaching us so much about how we can support them the best we possibly can.
“We would like to say a big thank you to the families who attended and to the teams that supported us. It was such a positive day, it was absolutely amazing.”
Immediate improvements ABS has been able to take on board include giving carers more time alone with clinicians, offering more support to families about managing risk, and more work with the siblings of young people living with bipolar disorder.
ABS higher assistant psychologist, Kelly McGurk, said: “Engagement events like this are the only way we can learn how to provide the best patient and family care. They are the experts – not us.
“What is promising is that many of suggestions and recommendations that were made we can start work on straightaway.
“We learnt so much from those that attended and we look forward to young people and their families teaching us even more as we continue to listen to their expert knowledge.”
In a session with staff and attended by NTW chief executive John Lawlor, young people and their families shared what life like before receiving diagnosis, what diagnosis meant to them, and what life was like now they were involved in NHS services.
NTW chief executive Mr Lawlor said: “It was inspiring to see so many young people and their families share their experience of living with bipolar disorder. It was humbling to be part of this event which aims to continue to improve how we support people who use our services.
“I’d like to extend my thanks to all who attended for their valuable contribution.”
Supported by Bipolar UK’s youth and mentoring manager, Rebekah Burns, participants chose photographs they felt represented their experiences, before sharing their views on a range of themes. These included how services can make a difference, moving forward into adult services, improving ABS specifically, and research.
This was bolstered by former service users sharing their stories about living well with bipolar disorder, with people in their mid-twenties offering their advice and support to young people in their mid-teens who are just starting their journey through diagnosis and treatment.
Through their expertise, those at the event advised on vital aspects of care provision, highlighting the need to support families as a unit, the importance of listening and different agencies working together.
Attendees also stressed that more work is needed to make the transition to adult services easier. There was also a strong desire among the group for more consistency across different services, increased psycho-social interventions and also a call for group psychotherapy, which ABS is now investigating.
Young people and families also shared what they would like to see made a priority in research into bipolar disorder. Professor and Honorary Consultant Psychiatrist, Hamish McAllister-Williams shared information about research processes, before the group gave feedback on where they would like to see more focus. There was a call for more investigations into talking therapies and complimentary psych-social support, such as the benefits of mindfulness and yoga to help improve quality of life.
Professor McAllister-Williams said: “The day was excellent. In particular I was struck by the range and quality of ideas that young people and their families were coming up with regarding possible future research. It is really encouraging seeing how engaged people were with research and how much they recognised the need for future research to better understand bipolar disorder and its treatment in young people.