My conditions make me more compassionate and empathetic | News

To mark Disability History Month 2023 across the North London Mental Health Partnership, we spoke to Joanne Scott, Patient and Carer Experience and Engagement Lead at Camden and Islington, about what this month means to her as well as her own disabilities/long-term conditions and the impact they've had in her life. 

How long have you worked at the Partnership?

I joined Camden and Islington NHS Foundation Trust 18 years ago as an administrator, went on to administration and site management, then managed the Camden and Islington Volunteer Service for 10 years. I have been in my current position for just over a year.

Tell us a bit about your role: 

My role is all about raising the patient/carer voice. This is extremely important to me as someone who has experience of being a patient who wasn’t heard in the past. I support service user and carer involvement and engagement, working to ensure that they are well supported when they get involved. As an Experience and Engagement Team, we are working on diversifying the patient and carers we are hearing from and helping colleagues to think about co-production - the ways they can work with, hear from and involve the people that are using or have used their services.

Essentially, we are working to ensure that we enable, support and develop effective patient/service user and carer engagement, understand and learn from their experience and feed back on actions taken or the impact their contribution has had.

What does Disability History Month mean to you?

It’s an opportunity to raise awareness of the challenges that people with disabilities and long-term conditions face, to support them with information on sources of support, and to help those without disabilities to understand how they can be good allies.

It’s also an important time to shine a light on the strengths that people with disabilities and long-term conditions have. Often, they are great problem-solvers and have resilience, empathy and compassion in abundance.

What three words would you use to describe this year’s theme of the ‘Experience of disablement amongst children and young people"?

Important, improvements needed!

How has being a person with a disability or long-term health condition affected your career pathway?

I think it’s helped my career. Living with my own health conditions has given me greater insight and understanding of what it’s like to navigate being given a health diagnosis you don’t want to have. The grieving that comes with this, the pushing to pretend to yourself as well as others that you are okay when you’re not, learning a new way to live and finding the right balance and reaching acceptance. It takes patience and kindness. I think I am a much more compassionate and empathetic person as a result of my multiple conditions. I have also been lucky to have great managers who have been very supportive of any workplace adjustments I’ve required to enable me to bring my best self to work.

What would you like to see happen to help increase inclusivity and improve reasonable adjustments for people with disabilities in workplaces and in healthcare?

I think training for managers on disability and reasonable adjustments would be helpful. With things like workplace adjustment passports and disability leave as standard and embedded in policies. This would help staff with disabilities and long-term conditions to feel more valued and supported.

I also think we need to really consider involving disabled staff and service users/carers when we are developing or amending services and our sites. So much of the way society is set up is what disables people, when a little thought can ensure barriers aren’t created in the first place.

Favourite book or novel written by an author with a disability or long-term health condition?

'Mad Girl' by Bryony Gordon, who shares her experience of living with obsessive compulsive disorder (OCD). I read it when I found out that someone close to me was living with OCD and it really helped me gain some insight into what they were going through. It’s an informative read that I'd recommend.

"When I’m not working I am…"

At my allotment. I got an allotment about 18 months ago and I love it. I don’t have a garden at home, so having a green space I can retreat to and grow some lovely vegetables, fruit and flowers has been fantastic. I always feel better when I’ve spent time there.

What would it surprise people to know about you?

I live with multiple invisible disabilities/long-term health conditions: hypothyroidism, vitiligo, and Addison’s Disease, which is a rare disease. I take medication daily to keep me alive.