Going through cancer treatment with a learning disability is tough. Here's how doctors can help

I am a person with a learning disability. I am a person who needs support. Support, for me, is that you need everything checked. “Are you doing cooking correctly? You need to practice that,” or, “Have you been to the right appointment?” That kind of thing. 

I had pancreatic cancer, but at first I didn’t know because I had no pain, and you can’t see inside the body. I was told I had to see a cancer doctor every two weeks and have a blood test, and every other week after that I had chemo. It was hard for me to understand.

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When I went through treatment, I had someone from Midland Mencap there. For seven months – from the start of the treatment until the very end – I had support. This was during the pandemic, and I was living with three friends – but they moved me out so I couldn’t get Covid and make the cancer worse, so I was living on my own. It was nice and calm and relaxing, but I couldn’t have visitors, except for Midland Mencap.

A member of staff, Leslie, would come for an hour to make sure I’d taken my meds, that I was OK with cooking, and if there were any issues, I could give them a call. I had an appointment board and Leslie wrote down the days I had to come in for my treatment and the times I had to take my meds. She also made it easier for me to stay calm and relaxed by making sure I understood what was happening. 

I was getting stressed and panicking, and at first, the doctors said Leslie couldn’t come in. There were no reasonable adjustments to help keep you calm. They also didn’t always explain things. 

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I would’ve liked a good decent chat, a one-to-one, and to be shown what was happening on a model – how big the cancer was, if it was getting better. 

I think people who have a learning disability should get more ongoing support. I think, for a person with a learning disability, emotional support can be as important as the treatment. 

Mencap asks people to: ask, listen, do. Ask what people need, listen to what people are saying, and then do the things that we’re asking you to do, within reason. 

I think everyone who’s got a learning disability should have a dummy, so the doctors can explain to you what is wrong with your body and what they are doing and how big or small the cancer is. Then you can pick the information up because you can see it. Student doctors should speak to people with learning disabilities right from the start. And I think everyone should have a full annual health check, without it being rushed. Then I think people would be less anxious. 

I have a hospital passport. It explains how to communicate in my style, the names of my meds, the times I take them and my doctor’s name and address. I think it’s absolutely brilliant to have. 

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