Aaron

Aaron says, I have a learning disability and have experience of mental health medication.

Over my 10 years of working for NHS England I have worked as an equal with professionals to make health services better for people with a learning disability and autistic people.

STOMP and STAMP is about medication for the mind (psychotropic medication).

I am working with pharmacists and other professionals to create resources and standards about structured medication reviews.

This will help professionals communicate with people in an accessible way. And it will help people to be equally included in decisions about their medication.

Carl

Carl says, I have worked on the Ask Listen Do project which is about feedback, concerns and complaints.

I co-produced an easy read guide about this topic which also had an easy read form that people with a learning disability could fill out. 

I produced a survey that asked people with lived experience, families and carers for their experiences of medication for the mind.

I co-designed the survey which received 660 responses.

We now want to tell people about what we will do next.

This will involve telling professionals in a set of standards what they should do to help people with lived experience.

David

David says, co-production is important to me as it brings people from different backgrounds equally into our work.

We have co-produced resources for young people such as:

My Rights magazine for young people in mental inpatient units. I lead on this piece of work and also created the illustrations. 

Different lived and learned experiences helps policy and services to be the most effective for all.

People should have the chance to co-produce their own support.

Here is an example of co-produced work to help autistic people do this: Ask Listen Do booklet.

Diana

Diana says, I am a family carer advisor in the NHS England national Special Educational Needs and Disability team.

I have 2 neurodivergent sons who both have complex special educational needs, and received support from education, health services and social care.

I am the NHS England parent carer advisor for the Partnerships for Inclusion of Neurodiversity in Schools (PINS) programme.

This project aims to improve inclusion in primary schools. Co-production is central to PINS.

I tirelessly advocate for co-production with children and young people and their families, to make sure services work for those who use them.

Gavin

Gavin says, I have a learning disability and have lived experience of being in a mental health hospital. 

Co-production to me is grabbing a blank piece of paper at the start of a project and producing a plan with people who have learned and lived experience.

I co-produce work on reducing the use of restrictive practice, and I co-coordinate inpatient independent peer advocacy to give people a voice.

I want to improve the quality of inpatient services for people with mental health problems and people with a learning disability and autistic people.

Jodie

Jodie says, I have lived experience of having a learning disability and type 1 diabetes. My assistance dog, Mindy helps me to manage my condition.

I am passionate about bringing more awareness and accessible information to people, to help improve health needs. Co-production is a big part of my work.

I feel co-production is so important, it allows my voice and experience to be heard and be part of something from the start until the finish.

I was very honoured and proud to co-produce a video highlighting the importance of cervical screening, and the NHS England easy read newsletters.  

Katie

Katie Matthews, Lived Experience Policy Officer say, I use my lived experience of having Down Syndrome and as a family carer to bring expertise to the team.

I am proud to say that I have co-worked with colleagues with lived experience on delivering training sessions and co-producing different documents and presentations.

My role is to work with colleagues to make and co-produce policies that reflect the views and needs of people with lived experience and sometimes politicians and government departments.

A piece of work that I am specifically proud to co-work on is reviewing Down Syndrome resources.

Mary

Mary says, I am a Senior Family Carer Adviser in the Children and Young People’s team.

I have 3 children, 1 of whom is autistic, has a severe learning disability and complex language, communication and behavioural needs.

He now receives NHS funded adult continuous health care. I am also a court appointed care and welfare deputy and property and affairs deputy for my disabled son. 

Involving parent carers with relevant lived experience to co-produce our work means we can improve access to the right care and support for the child and whole family, as well as their experiences.

We worked hard in keyworking, for example, to create a new service and training that is child and family centred, is kind and compassionate through improved understanding of their journey to get the right help.

Paul

Pauls says, I have a mild learning disability, a visual impairment and Lowe’s Syndrome which is a rare health condition. I work:

• on annual health checks and the learning disability register
• to create easy read documents and letters
• on the reasonable adjustment digital flag including advising on the e-learning and speaking at webinars about why it’s important

To me co-production is:

• talking to each other and coming up with a plan together – discussing who will do each part of the work, and then getting it done
• keep talking to each other about where they are up to with the piece of work
• working together to make sure all of our experience is included