We still aren’t getting health care right for learning disabled and autistic people. Too many people with a learning disability are dying too young.
An amazing friend of mine called Michelle died a few years ago after having cancer. Michelle was passionate about everyone being valued and listened to and would have wanted to experience to benefit others. So, recently we facilitated a workshop to celebrate Michelle’s life, to reflect on what had happened and think about what people need when they are ill. The resource shared HERE is the result of that moving workshop.
It wasn’t an easy journey for Michelle or her family. As an autistic and learning-disabled woman, Michelle struggled at times to understand what was going on: for example, why she had to lie still for a scan, why she had to take her clothes off for her scan and as for her two watches coming off! There was a long list of things that were difficult for Michelle. There were, thank goodness, some amazing people along the way such as the Acute Liaison Learning Disability Nurse, who certainly eased the way.
Most of the journey wasn’t easy for Michelle’s mum and brother. It’s enough to hear that your child/sibling has cancer but facing difficulties with getting appointments, getting professionals to understand what was going on and what Michelle needed certainly made it an additionally stressful time.
One of the worst aspects was that Michelle’s family needed extra funding so that Michelle had the support she needed. The family had to go to panel 5 times for this, with the funding agreed just a month before Michelle died.
This is so wrong! AT one of the worst times in their life, Michelle’s family were STILL having to fight for what was right and needed.
There is something fundamentally wrong with our system! The LeDeR programme was funded in 2017 by NHS England and NHS Improvement to improve the healthcare of people with a learning disability and autistic people.
Sadly, Michelle’s experience and death was not fully recorded in the LeDeR programme as someone from the programme contacted Michelle’s Mum, Chris, way too soon after Michelle’s death at a time when Chris was devastated, exhausted, and angry.
We must all make sure that people’s experiences and stories are shared at the right time and in the right way AND that the result is action and positive change.
Michelle’s family wanted us to share what we captured from the workshop mentioned above so that others can learn and grow their confidence in situations like this and ensure positive change.
Please DO share this widely: Remembering Michelle