At bemix we seek to influence, change and shape the society we live in - through our projects, groups and campaigns (see bemix Wider Values to learn about ‘Positive Campaigning' at bemix). A society that often leaves people with a learning difficulty and/or autism feeling unseen, unheard and like they don’t belong. Because of this, opportunities, platforms and services for people with a learning difficulty and/or autism can be lacking. Historically, this has been true of services available to parents that have a learning difficulty and/or autism.

“one common outcome for children of parents with a learning disability is that they are more likely than any other group of children to be removed from the care of their parents”  (Booth et al 2005, via Mencap, via BestBeginnings)

Some years ago, bemix took on the leadership of the Kent Parents Action Group which was started by Voice4Kent. The Parents Action Group was a group of parents with and without learning difficulties and/or autism working together to try and change things for parents. The number of people with a learning difficulty and/or autism who had their children taken away from them, was very high. Predominantly this was because of a lack of support for parents and families. Ensuring holistic support for families - whereby children and their parents who have a learning difficulty and/or autism receive the support they need - has always been difficult. 

As part of our work in this area, we have been co-teaching at Canterbury Christ Church University, in their Midwifery teaching department.  As part of their midwife training, students learn about working with and supporting mothers with a learning disability.  In partnership with the university, we have been delivering Lived Experience Training to the students. Ann-Marie, bemix Non-Executive Director, self-advocate and Group Supporter, co-teaches this module alongside senior lecturer, Cathy Bernal. Ann-Marie shares her experience of being a mother with a learning difficulty.

 

Left to right: Ann-Marie Lillis, bemix Non-Executive Director, Self-Advocate and Group Supporter. Cathy Bernal, Senior Lecturer at Canterbury Christ Church University

When asked: ‘How does it feel to share your experience with other people?’ Ann-Marie said: “It boosts my confidence and raises awareness about having a learning difficulty and having a child. It also gives me more confidence in talking to a lot of people in a room (sometimes this has been more than 45 people).”

One of the great success stories of this partnership and work, is that it has always been something that has been delivered by people both with and without a learning difficulty. Ann-Marie being so experienced at training, at telling her story and engaging in this way is now doing this work unsupported by bemix, alongside Cathy. This means that bemix are no longer required to provide that support as Ann-Marie is independent enough to do that for herself. “It gives me more confidence to do things that I enjoy without support... I don’t have to look to anyone when I need to talk, I can do this and tell my story all on my own. I feel like I get more of a boost as the students can see I’m doing it without support. They ask me more questions and are talking to me and not looking for the person who is supporting me.” said Ann-Marie.

As a result of recent national lockdowns, Ann-Marie has adapted the training so that it could be delivered remotely to large groups of students at once! Students who each have varying experience levels of working or knowing someone with a learning difficulty. Since moving sessions online and not being able to meet in person, the groups are only able to see static photos of each other on screen. In spite of this, Ann-Marie has continued to find that the groups of students she teaches have been engaged during her sessions. 

“Working alone makes me happy and gives me confidence.”

When asked about how the sessions had been adapted, Ann-Marie said: “Me and the other tutor have been meeting online just before our session to go through the presentation we use. We then decide who is doing what part and we use an app called 'Collaborate', which is similar to 'Zoom', but what the students are used to using at university. We go through the presentation and the students all join on 'Collaborate'. We changed a few of the activities and carry them out using a white board during the call, so the students are involved in the whole session. This seems to work well.”

As a result of the sessions, people have come away feeling inspired. One student came away so inspired by Ann-Marie that she put together a petition to make it mandatory for all midwives and nursing staff to have learning disability awareness training!

One student midwife at Canterbury Christ Church University said “The session in which Ann-Marie delivered for us was absolutely amazing, she gave us a very truthful and meaningful insight into how women with learning disabilities feel while receiving maternity care. It really opened my eyes up to how I can adapt and improve both my approach and skills in order to meet the needs and desires of all women no matter what disability they have. I also feel the way she spoke made me feel extremely empowered to learn more about the topic and make sure I use the skills and strategies she taught us when out in practice. Thank you for this opportunity.” 

It is important that people with a learning difficulty and/or autism, who are using these services and having this care and support, are included in training such as this. This is an example of Co-production, something that is at the heart of all we do at bemix. Co-production means that people are involved in all areas of their support - how it happens, how it is delivered, who is part of it, why it happens, the risks involved and when that support should stop. Co-production means including those who are often left out. It means understanding the value in the experience and skills that they can contribute to the conversation and work. This experience will then go on to influence, change and shape the society we live in so we may move toward a more fair and inclusive society. To learn more about co-production click here, or to learn about our Vision and Values at bemix, click here.

Cathy Bernal, senior lecturer at Canterbury Christ Church University, said: “I’ve been teaching in collaboration with bemix members for several years. Students consistently appreciate their opportunity to meet with a mother with learning disabilities, and have evaluated the sessions very highly. They relish the opportunity to ask questions and exchange views with my co-teacher, and to hear first-hand the details of the mother's experiences of services. Recently these seminars have been delivered online, with the aid of Ann-Marie Lillis, whose teaching skills and use of family photographs to engage students has been extraordinarily successful. 

This teaching is of course essential to our midwifery students' learning, as more women with learning disabilities are having children, but there appears to remain high levels of ignorance about how to support them. bemix members are helping to make a difference to this, and assisting in the development of midwifery practice; quite an achievement.” 

With career training such as midwifery, it is important that before people begin their new career, they have an understanding of how they can use their skills and knowledge to support everyone in society. Support that is inclusive of those with learning difficulties and/or autism. Students often say that, when they are in their studying role, there is more opportunity and time to absorb and understand the values linked to a fair society, where everyone can be seen, heard and understood. When this understanding is in place, reasonable adjustments can then be made to the way they work and how they support people with a learning difficulty  and/or autism. When people are studying, before the work begins and workloads take over, it is the perfect time to educate and inspire.

"The session was brilliant hearing from a (maternity) service user's experiences. Things came up I hadn't thought of and I plan to bring these to my practice." Student midwife at Canterbury Christ Church University