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Healthcare access: personal perspectives

In this video, parents of children with developmental disabilities and adults with disabilities discuss their experience of healthcare access.
YETNEBERSH: For me, it would go beyond physical accessibility or the building. It’s about the attitude of medical professionals. It’s about the financial affordability. It’s about also the quality. And yes, I have faced a number of accessibility issues, as I have mentioned before. Because health services are not established in a manner that they can cater for the need of everyone. Like, for example, all the prescriptions come in a written way. And then, because I’m blind, I cannot read the prescriptions. And including the appointments for the vaccination of my children are only written, they’re not communicated orally. Then those also become barrier for me to maintain the appointments and get my children to get vaccinated.
TOM: So about 10 years ago, I became spinal cord injured, very quickly, almost overnight, as a complication of having restricted growth. And I remember being in hospital, and the doctor from the spinal injury unit came to see me. And he said, “oh, we can’t take you, you’ve got special problems. You’re restricted growth and spinal cord injured. You’ve got to go to a special place for people like you.” And I said, “hang on a minute. There is no special place. I have spinal cord injury. You need to help me with bowel and bladder and skin and wheelchair, the same issues that anybody who becomes spinally cord injured needs.
Let me in to your rehab centre so I could benefit from the skills that your colleagues will teach me.” And after about 10 days, they relented. And they said, “all right, you can come to us.” And of course I fitted in. Of course, it was helpful. Of course, I came out fully equipped to deal with life as a spinally cord injured person. The problem is that we always think that because you’ve got this diagnosis or this difference, you have to go to a specialist place. You might have pretty generic problems, so let’s deal with them in the mainstream way.
HILARY: Hannah had a fall, and she cut her chin open, and she had to have it stitched up. But she won’t sit in a chair and stitch it up. You’ve got to do it under general anaesthetic. And the plastic surgeon had absolutely no understanding of what it means to have a disabled child. They put us in a room, and we had to wait for seven hours before anybody came to us and said, “oh, no.
She’s not going into theatre at 4:00.
She’s only going into theatre at 7:00.” Just it was shocking. But yeah. So you live and learn. But then another plastic surgeon after that, she had another fall and also cut open a different place, was absolutely brilliant. So it’s just some people understand, some people don’t.
LAMBERT: One of the best things that we have is there is a named person with the super specialty services who is, I think, a nurse practitioner. So having that contact helps in communication, as well as getting a prompt response. So it also kind of ensures that if we have any queries, or if we needed to get in touch, or if there’s any concern. So our first point of contact would be that named person. And having that has kind of eased that accessibility.
CAROLINE: A lot of the appointments I still have, they don’t need to see him. So whether those can be done on a video call, or I could just go without him, for example. Because now we live in West London, he’s at school in North London, the hospital’s in South West London. It’s two hours by the time I’ve left home to when we get to the hospital. And I’ve got to make his food because I can’t get him food on the go. So it’s a really big part of our day, and he misses a lot of school. So yeah.
I think just trying to be more mindful about how many appointments, are they really necessary, can they be coordinated, would really help.

In this video we will hear from parents of children with developmental disabilities and adults with disabilities, as they consider their experience of accessing healthcare services.

We will first hear from Yetnebersh and Tom, who will share their personal experience of healthcare access in adult life. After this, Hilary, Perry, Lambert, Caroline, Lamiya, Yasmeen, Halima and Adrião will discuss their experience of healthcare services and make recommendations for healthcare professionals.

In the next step we will hear from professionals about how we can improve access for children and their families.

Please do share your perspectives and thoughts in the comments section below.

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Integrated Healthcare for Children with Developmental Disabilities

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