Q&A: Lived experience voices series

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By ‘Panther Queen’.
An Expert by Experience member within My Care Academy – Guest blogger.

An expert reference group of people with lived experience of mental health services is working with My Care Academy within the NSUN 4Pi standards on co-production.  Within our partnership, we are keen to elevate and amplify the voices of people with lived experience. Following on from a recent blog workshop with our expert reference group we’re launching a series of lived experience interviews with them to reflect on what they have enjoyed and gained from co-producing and working together on My Care Academy.

Q: Hello, my name is…?

A: Panther Queen

Q: Tell us a bit about yourself?

A: I’m an active and committed service user, I’ve used services in North London for 23 years and wanted to help share my knowledge and experience within this group.  Lifelong Learner.  I’ve been involved in Healthwatch Islington  and volunteered for other organisations including Mind. How would I describe myself? Curious. I’ve been dealing with some complex personal events and dealing with negative trigger points.  I’ve recently been doing art therapy to help support me with these. Plus this group has been helpful to give me space to talk and think about different things.

Q: How long have you lived in London and what do you love about it?

A: I’ve lived in London for years. I returned to the UK in 1994 and moved to North London.  I love the diversity of London and the variety of options and choices. I can always get a pint of milk 24 hours where I live!

Q: Are you a cat or dog person?

A: Neither!  I prefer fishes.

Q: What mental health topics are you passionate about?

A: That’s a hard question…I’m passionate about good practice in mental health and support for service users no matter what the mental health issue is. Currently I’m concerned about crime and immigration and support for people.

Q: Why did you join My Care Academy expert reference group?

A: I want to have a positive impact to shaping care for other service users. I was interested in MyCA helping improve the training and knowledge sharing for mental and physical health staff and students in the partnership in C&I, BEH and MDX University.  As a life-long service user I realised that I could collaborate and share my skills, experience and knowledge with clinicians. My past experience involves coaching, mentoring and promoting wellness in the community, with GPs and hospitals which has been very useful to share within the project.  This project has really helped give me perspective on the range of experience I have and how I can share and make a difference to the project and give something back.

Q: What have you learnt from being part of MyCA?

A: I’ve learnt more than I expected!  The biggest thing is that I’ve learnt to express my views. It’s been a great safe space to contribute and share my views and experiences.  The team has been very supportive and I’ve also learnt more about digital tools and learning as well like: how to use Slack, how to write a blog (this is my first!).  When life has been busy it’s been a great place to come and stop ideas and things ‘marinating’ in my head and instead focus on something else and contribute to improving mental health training and services via this project.

Q: What has MyCA learnt from your input and voice?

A: I think it’s learnt I’m direct and speak my mind! And that I have different experiences to share.

Q: How has your lived experience helped shape the MyCA partnership work?

A: I’m currently juggling support with some recent personal life issues and the ERG group. It’s been difficult but it’s helped having some recent mental health support as it’s given me recent experience to draw upon and share with the ERG group.  I think overall my lived experience has meant I can be honest, direct and ask tricky questions as I have a good experience of the mental health journey for patients from seeing a GP to being in hospital.

Q: How have you personally benefited from working with MyCA?

A: I’ve felt encouraged, listened to and valued. Which has been very rewarding especially when juggling life’s personal up and downs and focusing on my own self-care.  I’ve gradually built my confidence up, to help elevate the voice of service users despite the ups and downs of my own health. Suzanne, Jenny, Sarah Carr especially in the Expert Reference Group within the MyCA team have been very supportive and caring. I feel valued and it’s helped me feel empowered to share my story and shape training for clinical staff.   I’ve had the headspace to reflect and share my experiences –it’s been rewarding.

Q: What have you enjoyed about the co-production work with MyCA so far?

A: Using my past experience and shaping MyCA. Commenting on the Virtual Classroom training units, connecting and learning new digital skills within the Knowledge Bank and making a positive difference to mental health care in the partnership organisations. Obviously meeting other service users and sharing our stories has been rewarding and empowering, we’ve kept each other going in between the meetings and encouraged each other.

Q: What tips would you give to other service users or carers considering getting involved in ERG groups or co-production?

A: Just do it! It was a bit scary at first I didn’t know what to expect. Be prepared to commit to it and you’ll find it very rewarding personally. The MyCA team created job descriptions for the roles and made it clear about how we could shape the partnership. ERG members have attended the board and ops meetings and been frank and fair in experience and feedback. It’s helped break down boundaries between service users and mental health staff. Personally, I’ve also found that it’s helped to boost my confidence and personal resilience. I didn’t value some of my knowledge and experience and now I do. The ERG group and wider MyCA team have always treated us as individuals not just ‘Service users’ it’s been a good piece of collaboration. I’d recommend it!

Q: Can you describe a random act of kindness or empathy that you experienced as a service user and helped you, your family or friends that would inspire a new healthcare professional?

A: Since October 2017 I’ve been volunteering with Mind Islington. Despite my mental health stressors, I’ve found it very helpful. In Autumn I experienced mental health difficulties due to personal family events.  I contacted Mind and they allocated me a coordinator and I visited her and she took time to really listen to me and break down all of my issues and needs, step by step.  This information was then written up in full and fair way in a letter to support my medical case for my ESA assessment.  The volunteer contact visited me at home, helped me prioritise issues and stay less in my head and talk more about issues and feelings over an 8-week period, every Friday morning.  She took time to really engage with me and went above beyond supporting me.

Q:  If you wave a magic wand and change something about mental health care in London what would it be?

A: I’d like less cuts to community services and secondary care. More funding for community therapy like art therapy and quicker access to people who need mental health help.  More support for criminals with mental health issues to get the long-term help they need. I’d like the government to divert funds into small projects that work not just large ones and to reinstate the Nursing bursary.

Q: What language would you prefer healthcare and the media used to describe mental health and conditions?

A: I don’t like the media ‘bashing’ mental health or using stereotypes about people with issues.  For example, I enjoy listening to radio show debates, we’ve recently celebrated 50 years of these in the UK. We’ve had great women talking on these radio shows and I think we should surface and confront sexism in healthcare and talk more about taboo issues so that mental health and women have a greater voice.  I’d like to see more focus on ‘wellness’ plans vs recovery or treatment plans.  In mental training for staff, I’d like to see a common thread of personalised care and humanity so that this sits alongside clinical practice and is just as valued.  A real focus on the whole person, physical and mental – as they’re linked.

Q: How would you sum up MyCA in 3 words?

A: Hmm. Engaging. Developmental. Collaborative.

Discover more
You can follow the lived experience series of blogs on the My Care Academy website.

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