Making the difference - Learning Disability Health Inequalities Board

Speaking out about personal experiences members have had with medical or clinical appointments, makes the case for necessary change much more real.

Elizabeth shared her experience of a hip replacement with participants at the Health Inequalities Board meeting on July 15th. As the planned filming wasn’t possible, the story was sent in to Angela at Surrey Heartlands and she ensured this was shared.

System Convener Liz Williams read out Elizabeth’s story to the meeting participants.

“Please can I say thank you on behalf of the Board yesterday.

Elizabeth’s story was really well received and we had lots of discussions which were really interesting

It led to us putting some things to talk about on the plan for the Board such as talking about using the private sector and how different those pathways are

We were so pleased to have heard the story and it has helped us think about other things we need to make better for everyone”

Elizabeth said, “I am happy to share my story, it’s like a long journey, I went to the GP and had a referral to a consultant, but I had to go privately as the NHS waiting list was too long to wait in that much pain. I had an anesthetic it is emotional, I lost my appetite a few days before because I was anxious and wasn’t eating but it wasn’t awful. My mum stayed with me (at the hospital) over night afterwards, not during the day though.”

By sharing her own experiences there is a clearer understanding of how the procedures can make people feel, directly from someone who has lived through it.

The reasonable adjustments made for the hospital stay included some additional explanations, parents staying for longer and emotional support. Interestingly nothing was offered in Easy Read, and the admission letter was a standard one, meaning support was necessary from staff or parents to understand it, and also to then make further appointments.

Patient stories are a vital part of the meetings to bring the reality of the health inequalities directly to those who can make the necessary changes happen.