Using lived experience to influence change in mental health care

Content warning: this article references suicide

Identifying as someone diagnosed with Borderline Personality Disorder, and only getting access to effective treatment after a near fatal suicide attempt, Marsha is now a campaigner for early intervention and prevention, and better services and care.

Everything Marsha does is on a voluntary basis – and she does a lot! Marsha’s work is of significant therapeutic benefit to her and improves her mental health and wellbeing. She is a mental health advocate, ambassador and peer consultant at the Centre for Mental Health, Vice-Chair of NHS Confederation's Mental Health Network, and is Honorary Expert by Experience at the Anna Freud Centre for Children and Families. Recently, she was awarded the Royal College of Psychiatrists President’s Medal.

Now, Marsha, who lives in Manchester, is embarking on a Churchill Fellowship. She has already visited Australia and, when we caught up with her, she was preparing for a trip to the States.

Marsha explained her journey from very dark days to the mental health campaigner she is now.

“I had a chaotic childhood and went on to develop very unhealthy coping skills – one minute I was happy, the next screaming and argumentative, then smiling all in the space of seconds. My son became my carer, and my Mum was a huge help too.

“I started acting up. It is so painful, having all those thoughts going through your mind at the same time. At least when I was creating havoc, I felt in control.”

Marsha was finally diagnosed with Borderline Personality Disorder (BPD), but this didn’t provide a solution.

“Having the judgement and no effective treatment made me act out even more. It was only after a near fatal overdose in 2008 that I saw a turning point.”

Marsha began Mentalisation-Based Treatment (MBT). It was an intense, 18-month therapy, which gave her the tools to be able to pause and deal with her myriad of thoughts and feelings.

Marsha considers herself one of the lucky ones. Access to treatment is patchy, but she is convinced that early intervention and effective treatments, like MBT, will make a difference for those with Borderline Personality Disorder.

And so, this is the basis of Marsha’s Fellowship. She is exploring what other countries offer and how they operate and will bring all this learning together in her final report.

In Australia, Marsha visited the Helping Young People Early (HYPE) programme at Orygen in Melbourne. She spent three weeks with the team, comprising clinicians, researchers, parent carers, and living and lived experience people.

“One couldn’t work without the other and there was that continual conversation, it was a completely holistic approach to care. I got to sit in on some clinical review meetings, and the way they spoke about the young people was with care and love. The thing that blew me away was the young person doesn’t have to fit into a fixed pattern of, say, visits once a week. The care is always evolving around the young person. Plus, they offer parent and sibling support.”

In the United States, Marsha’s first visit is to the McLean’s Gunderson Personality Disorders Institute, part of Harvard University. They run a children and young people’s service in-patient setting.

“It will be interesting to compare this privately-funded medical model, to the UK and Australian governments’ funded health care.”

Marsha will then attend the National Education Alliance for Borderline Personality Disorder Conference at Yale, to look at a training to engage the families of young people in the effort to support - Family Connection.

Next, she will travel to Houston, exploring how MBT has been adapted for adolescents, spending time with clinicians, researchers and students, talking about early intervention and prevention.

Her final visit will be to the Emotions Matters BPD support group in New York, which runs anti-stigma ‘BPD festivals’, to explore what they do around advocacy and celebrating the condition; looking at the positive that BPD brings.

Even before Marsha embarked on her Fellowship, she had reached out to health professionals to talk about her plans. As a result, she recently visited 10 Downing Street, to participate in a workshop, where she talked about her experience of using A&E services.

When Marsha returns to the UK, she plans to take the summer to assess what she has learned and write her Fellowship report.

She said: “I don’t know how but I seem to be well connected within the mental health community. I feel like pinching myself at times. I have grown in confidence and have some pretty amazing people standing alongside me, which means I have been able to do what I do.”