Volunteers raising awareness of personality disorder

A group of 'expert by experience' volunteers are helping to raise awareness of personality disorder, to improve care and support others with a diagnosis.

The Personality Disorder and Complex Needs Service Development Collaborative (SDC) contribute and work on ideas to shape our services for people living with complex emotional needs and/or a diagnosis of personality disorder.

This can include:

• Supporting staff from our Specialist Personality Disorder and Complex Needs Team to deliver training to health and social care staff across our Trust and other organisations in Essex.

• Being involved in service development projects

• Working as peer support workers for our services.

SDC volunteer Katie Ireland was inspired to become a peer support worker after sitting on an interview panel for a new clinical associate psychologist.

She said: “I thought if my decisions are actually taken on board, I could help change the way things are and reduce the stigma of mental health diagnoses.

“I'm really passionate about showing that things can change and lived experience is the first step into that change.

“We can change the specific therapies that are available. We can change the stigma that is linked to mental health diagnoses. We can suggest new ideas to help bridge some of the gaps in the mental health system.

“We make our service users' journeys that bit smoother and to show that we can get better and we can move on to do great things. We're not always going to be stuck in this dark place."

Katie has also been involved in other projects including an information pack for people who are newly diagnosed with a personality disorder and/or complex needs, to help bridge the gap between diagnosis and beginning therapy.

Being part of the SDC and attending the support groups has made a “massive" difference to her wellbeing.

She said: “It has majorly boosted my confidence and the kindness that others going through similar situations have shown me has made me not feel alone in this journey.

“I feel like a completely different person, not because I attended therapy but because of my involvement in this group."

Volunteer Fiona Thomas delivers training alongside staff to health and social care workers across our Trust and organisations across Essex, including charities, housing associations and social care.

She lost her father to suicide when she was eight and her mum tried to get her help at the time but wasn't able to.

She said: “My symptoms started to manifest when I was 15 but I didn't get a proper diagnosis until I was 35, so you can live a long time not knowing what's going on with you.

“When I knew what I was dealing with I could do something about it."

Fiona has had negative experiences when she has been in mental health crisis, including not being spoken to and having her feelings validated.

She hopes the training she delivers raises awareness of what it is like for people with a personality disorder so that professionals can deliver more informed care.

Fiona said: “Most of the people I come across are already working in the mental health sector in various departments and just want a deeper understanding of people with a personality disorder and how they're feeling in that moment.

“I find it really rewarding, I feel I'm giving something back.

“I can give them examples of where I have got extremely upset in a mundane, every day situation and I think that helps them understand how everyday things can tap back into someone's trauma.

“It's really important for me because there were positive experiences when I was in crisis but there were also quite a lot of negative, both in health and in policing.

“We have made steps forward in that time. I feel it's easy to complain but it's much more proactive to play your part in improving a situation."

Fiona has been unable to work for 15 years but is studying an Open University degree in criminology and psychology and her voluntary work through the SDC has boosted her confidence.

“It's helping me pave a path to what I want to do. I find it extremely rewarding. It does me real good to know I am helping and it's also very beneficial for my own self esteem."

Bryony Dale, Service User Network manager and facilitator for the Specialist Personality Disorder and Complex Needs Team, said: “The volunteers have contributed a phenomenal amount of their time, energy and support to the Trust over the past two years.

“They ooze enthusiasm, determination, compassion, hard work and persistence and the services we have today for personality disorder would not be what they are without these willing individuals.

“They deserve to be celebrated for their contribution to the Trust and ability to use their mental health experiences as a super power, rather than let it debilitate them."​

You can find out more about the SDC on our website​. ​