Admin Tuesday 15th June
To mark Learning Disability Week 2021, Stoke-on-Trent City Council and Stoke-on-Trent Clinical Commissioning Group have launched ‘Living My Best Life’, an exciting new strategy, co-produced with people with learning disabilities, families and carers.
Living My Best Life is based around achieving five outcomes, all of which came from conversations with adults with learning disabilities. The strategy’s vision is that people with learning disabilities will be able to say “I feel safe. I am healthy. I achieve my goals. I love where I live. I enjoy my life.”
You can download Living My Best Life here: https://www.stoke.gov.uk/downloads/download/891/learning_disabilities_strategy
Here’s a short video of Dr Waheed Abassi, Clinical Lead for Mental Health and Learning Disabilities for Stoke-on-Trent Clinical Commissioning Group, talking about Living My Best Life and healthcare: https://youtu.be/U9jqeicKonI
Each day this week, as part of the launch of Living My Best Life, Reach, an independent self-advocacy project and part of Asist (Advocacy Services in Staffordshire) are writing a blog about one of these five outcomes, using ideas and experiences people have shared as part of the strategy development work, and in other discussions over the years.
Today, we’re writing about ‘I am healthy.’
People have been speaking up to Reach about health and healthcare for as long as the project has existed (2000). Reach members have been part of many, many conferences, training events, meetings, focus groups, sharing their own experiences and ideas on improving healthcare services for people with learning disabilities.
Here’s a short video from an event Reach co-hosted in 2014 where adults with learning disabilities and carers spoke up about health and social care services working together: https://www.youtube.com/watch?v=4r3uZ7VWIYg
Living My Best Life includes plans and adjustments to the way NHS services are delivered to people with learning disabilities in Stoke-on-Trent. This should make health services easier to use and easier to understand. By making sure health support and services are more accessible, these plans and adjustments will reduce serious health inequalities that people with learning disabilities experience.
People with learning disabilities are living shorter, unhealthier lives than people without learning disabilities. People with learning disabilities are more likely to have mental health issues, epilepsy, be underweight or overweight, and have dementia. They also receive worse end of life care.
Living My Best Life includes measures to improve NHS staff’s understanding of, and ability to communicate with, people with learning disabilities. Based on what people have told Reach over the years, this is a clear priority:
“Healthcare is very good for some people but very bad for others.”
“Staff need training, training, training.”
“People with a learning disability need to take part in training hospital staff and share their experiences with them.”
“I don’t always get enough information, this makes me worry more, not knowing what is going on.”
“The nurses didn’t know enough about learning disability to help me. They need get better, get some nurses in who know about people with learning disabilities.”
“Yes, staff should be trained to make sure they understand people’s needs, they should have someone with a learning disability doing the training though, they know how these things affect them better than others, it’s about lived experience.”
“If people are going be supporting me, I’d want them be trained up.”
As an advocacy organisation, Reach are clear that advocacy and self-advocacy are essential for healthcare organisations to understand what people with learning disabilities need. Reach members have told us they feel the same way:
“Advocacy is very important. Include advocates in this working together with the health and social care staff.”
“I have trained staff at the hospital, sharing people’s stories and experiences so the hospital can make sure things get better.”
Helping people take control of their own health is an important part of staying healthy and Living My Best Life is clear that improving peoples’ health literacy is a priority. Again, Reach members agree and called for support to be in place that will allow this to happen:
“[This is] important, need to help people with their health, make it easy for them to understand the ways to do things right.”
“Being healthy gives you a better life”
“Being healthy helps you and is good for your brain, you get more out of your life”
“[The NHS should be] supporting people to take their health seriously, talk about their health, stay healthy for longer, talk about cancer, talk about healthy lives.”
