Have you ever gone to a GP, and they don’t speak to you, but they speak to your carers or parents?
Well, I have experienced this sometimes doctors treat us with special needs like we are not in the room when really, we are, and we can understand. We may just need extra time to understand. Even when they do like body assessments, they always ask my parents about my pain. How do they know my pain for someone with high pain tolerates sometimes I don’t feel pain till it gets really bad. I have also been turned down on referrals because I have learning disabilities and health issues doctors are not trained, or I have too many needs, and they feel they can’t support me. Yes, it true how can NHS turn you back to your Gp when the Gp refers you to get support or an outcome of your symptoms.
If you have long term conditions do doctors listen with your new symptoms, you have?
Some doctors I seen will just go “well that’s your condition when in fact its something else and this is also important. For example, my health history contains different symptoms and is for different health issues but many years ago doctors said it was just anxiety when really it was not. Iit was Acid Reflux and the doctors made it worse as they kept telling me to just take painkillers when I felt it and it would help.
Really medication makes you think the pain is gone when in fact it doesn’t. Another example I can say is that one night I hurt my thumb getting into bed. Due to being hypermobility its normal to be in pain, so I didn’t really think anything of it but two weeks later I went to A and E as it was still painful but the doctor said it was just hypermobility until I insisted I had an x-ray and magically it was not hypermobility it was broken but not noticeable. Hypermobility could cause it to be extra stretchy and mobile. Also being young, doctors don’t always listen. Some doctors are great and will check and explain things. But being young, doctors don’t always listen which can take longer to get the help or get diagnosed.
What I think our Gp’s, or any doctors can do?
They should always try and talk to us as we’re the patient they are seeing. Yes, there are times an adult might need to help us explain what we mean and that’s alright. I think doctors should allow more time for disabled people as sometimes they do but other times they rush you which is harder for a person like me that has disabilities and who takes longer to say things and understand what they’re saying.
I think they could use pictures for the complicated language they use and be more understanding of our pains. The best doctor I had this year was someone who drew what he was explaining which was amazing for me and enabled me to understand what was going on in my voice box and the muscles. Then another year a doctor at different hospital for something else also drew pictures which was much better.
I also think if we’re visiting out local Gp we should be able to see the same doctors repeatedly so then our relationship would be built on trust.
I also didn’t know but on some websites for hospitals they have hospital Passports if you have special needs, you can list your disabilities and then they understand you more. I saw this once hospital but at the time I didn’t have time to ask about it but next time I get a hospitals appointment or in hospital I’m going to ask. You also get a Learning Disability nurse and at appointments you can phone up and make enquiries for one to join you for your appointment, which again I wished I’d known about over the years and maybe I will try to do if I ever did have to be alone in hospital.
If you ever had scans, what do they say?
Some will say no parents or carers allowed in but sometimes they don’t know we have disabilities I have experienced this and a lot of times they are nice and helpful when I’m in the room alone. They don’t always understand I can’t see without my glasses and even the opticians don’t understand that either.