James’ hospital passport was lost three times which led to him having several bad and potentially dangerous experiences in hospital.

James was on a liquid diet (including medication) because he has an oesophageal stricture, which makes it difficult for him to swallow. James’ support workers and PA weren’t allowed on the ward to begin with, because of rising Covid cases in the area. He kept calling them in distress, telling them that he was refusing food.

There was no Learning Disability Nurse available so Team Manager Rebecca Amos was in constant contact with hospital staff:

We’d already explained that the stricture was so far down that you have to do an abdominal x-ray to see it.

Rebecca also managed to get James’ gastro consultant in contact with the hospital, who confirmed his condition.

She added:

People need to understand the needs of someone with a learning disability or autism.

James’ mental capacity is high and he’s such a good advocate for himself but in those situations it can be extra scary because someone with a learning disability or autism doesn’t always understand the information they’re given. People need to understand how to give them that information.

After he was discharged home, James was supported to raise his concerns with the hospital, letting them know what they could do better. He worked with Stockport Advocacy and Healthwatch Stockport to create a video to encourage other people with disabilities to speak up about their patient experiences: https://youtu.be/56Mo8-IGv-I

James has since been back for the second part of the procedure. This time, the hospital safeguarding team contacted Rebecca and the team to assure them he wouldn’t have the same problems.

Area Manager Catherine Taylor said:

They wanted to know if he wanted a dedicated nurse responsible for him during his stay. They asked us what level of involvement we needed to make sure that he would be safe in hospital.

The learning from that, which I think James really pushed for, was that when he went in the second time, the hospital had a much better approach to make sure he wasn’t put at risk.

I think people don’t understand the support we can provide for someone after their operation. They’ll have as good a chance at making a good recovery as anybody else.

James has since recovered from his procedure. Although he’s no longer supported by United Response, he’s very pleased to be back in the kitchen, cooking his favourite Jamaican recipes!

This content is part of a series of hospital stories – read more here.

  • Jenna Lloyd is Senior Content Officer for United Response.