Empowering experts by experience to become leaders

Earlier this year, we started the journey of setting up our Learning Disability and Autism (LDA) Programme Board. Our ambition for the Board was to provide leadership to projects designed to change the way the system and organisation supports people with learning disabilities and autistic people.

Starting this programme was crucial as people with learning disability and autistic people often are unable to have their voice heard and this Board will enable these people to speak up. We need to hear their views in order to transform our services to meet their needs.

We knew from the start that we wanted experts by experience to become equal members of the Board and that they would be able to hold the whole organisation to account.

To kick this off, we organised virtual public engagement events where experts attended to offer their views on an official programme name and vision. When organising these sessions, me made particular consideration to people’s communication needs due to the sessions being virtual due to COVID-19. In doing this, we approached several charities, the Trust’s patient experience group, and also a leading expert in the field of engagement who happens to have a learning disability themselves.

We ended up holding four sessions in total, one of which was an email event for people who were not comfortable offering their views on camera. During each session, we described our ambition of setting up a Programme Board and many experts expressed their interest in becoming a Board member. A couple of standout quotes from the sessions were:

“We need easy, equal access to effective, local treatment that is relevant to physical, mental and social care needs”

“We need help overcoming stigma, improving our wellbeing, and support in attaining our aspirations”

Throughout this journey, we also transformed the way we created our documents; we made it the norm to send every single letter, timetable and meeting minutes in high contrast and easy read. Unfortunately, more often than not, these types of documents are not widely available to people with learning disabilities and autistic people, meaning they are often excluded from conversations. These need to be made the standard in all meetings, not just learning disability and autism specific ones.

Our first Board meeting is being held this month and we are incredibly excited to start to drive projects forward which will support those with a learning disability and autistic people in our communities, who are often sadly offered care unsuited to their needs.

Setting up the Programme Board is just one step in the direction of including people with learning disabilities and autistic people in the conversation, but we as a system still have a long way to go.

  • Acute
  • Acute > Patient Empowerment
  • Acute > Patient Experience
  • Acute > Patient Safety
  • Leadership and Management
  • Leadership and Management > Quality and Performance
  • Leadership and Management > Quality and Performance > Valueing service feedback
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