14 Jan How can health and social care be improved for adults with learning disabilities and autism?

This was a really meaningful co-production project: to understand the health and social care experiences of adults with learning disabilities and autism, and to translate the resulting insights into this film of actionable recommendations.

Thanks so much to the Social Care Institute for Excellence (SCIE), their excellent comms manager Bailey Hawcroft-Hurst, and their brilliant ‘SCIE Fliers’ who are featured in the video, for trusting us with getting their important messages out there.

While the recommendations are based on the experiences of people with learning disabilities and autism, they’re relevant to everyone.

Transcript:

This is a brief video guide to help those working in adult social care better understand and support people with learning disabilities.

To begin with, here are three things we’d like you to know:

1. Many of us have existing trauma, which can affect how we respond to situations.

2. Some of us may have received a late diagnosis, which may have affected our life experiences.

3. People with learning disabilities often face worse healthcare outcomes, which can affect our trust in the care we receive.

But, we have lots of tips for how you can help.  

When communicating, keep in mind:

– Everyone is unique, so take the time to consider each person’s individual needs. Don’t be afraid to ask what our needs are.

– How we process information can vary, so explain things in a way we’ll understand. Use simple language and be clear and concise. Avoid jargon. Some of us may benefit from visual aids like images or emojis, or from having a friend or family member present during discussions.

– It’s more productive to emphasise what we can do well, rather than what we can’t. So focus on our strengths to help us shine.

And when it comes to our health and care:

– To design more effective services, collaborate with people with learning disabilities in the planning process, particularly with those who have relevant lived experience.

– Navigating services can be complicated and stressful, especially if there’s poor communication between departments. Assign a single point of contact, like a Learning Disabilities Liaison Nurse, to help.

– Before any appointments, make sure we meet with the liaison contact, either virtually or in person, to discuss the process and manage expectations from the start.

– Keep us involved in every decision that affects our care, and communicate in a way best suited to the individual. This approach ensures that we are part of the process and feel safe.

– Our hospital passports contain essential information that can often be overlooked. Please read them, and remind us to bring them to every appointment. It saves us from repeating the same details every time.

– Where we’re comfortable, involve our family members in discussions. They may provide valuable insights and a fuller picture of our needs.

– Finally, for our support workers especially, please don’t forget to look after your own health and wellbeing too.  

By implementing these steps, we can all work together to make services fairer for adults with learning disabilities. 

To find out more, visit: www.scie.org.uk/tacklinginequalities