Healthcare access: a professional’s perspective

TOM: I think one of our tasks to achieve healthcare inclusion is to train health workers. Community health workers, nurses, doctors. They all tend to think of disability as a series of problems, as diagnosis, as body parts that don’t work. But we have to remind them that disabled people are people. And they need a quality. And so it’s not just about the technical information that a health worker has. It’s about that attitude. About their awareness. That it’s not diagnostic overshadowing. It’s not the condition that might explain it. These are folk with ordinary needs like everybody else, so treat them normally. Remove barriers, ensure they get good healthcare.

SHEILA: You are required as a service provider, and as a health professional, to make reasonable adjustments, so that this person has equal access to your service. So that might mean that you– if you’ve got steps up to the front door, that you’ve got to provide some other kind of way of access. It might mean that for somebody who is– finds it very difficult to wait or might be– might distress other people in the waiting room, or has no time concept. Which is very common, not to be able to understand time. That you have to be a little bit flexible about the appointment time.

And for somebody with autism who comes late to the appointment, but doesn’t understand the notion of lateness. To tell them that they’ve missed their appointment is actually really rather unhelpful and rigid of you. Because that has no meaning for them. And it just will add huge stress to the people who are supporting them. So– or it may be that offering an appointment at the beginning of the clinic for some people, or at the end of the clinic. Or it may mean that you need when the person arrives to find a quiet space for this person to sit so that they will be OK when they come into your room.

That you have to go and meet them there in wherever they’re sitting. That you don’t expect somebody else to bring them. They need to meet you, and come with you. Not– do you see what I mean? It’s lots of different kinds of ways. But it depends on the individual, people who know will be the parent. Who will be able to say to you, “if I’m going to be my child, and it– I just can’t get him to you at half past eight in the morning.”

“If it’s a very noisy waiting room, and he’s going to have to wait an hour, we will have to go home. It wouldn’t work.” If somebody says that, the receptionists, the staff need to respect that.

TRACEY: How do we draw alongside the family? And how do you build trust? How do you build a relationship? And sometimes that’s difficult with transport, and finding time, and repeat appointments. Or just even the space. Where’s a kid friendly space? You learn through play. And so how do you do that? Depending on people’s expectations as well, and working that out. So sometimes people will want to be told what to be able to do. Others want to be able to work it out with you. Others aren’t too sure what it involves, and you can draw alongside them on this journey. And so trying to work where you are on that.

Working through. I think the communication with kids can be difficult, if you come in thinking you’re the expert. I enjoy learning from them as well. And so working out how they respond to what you do.

STEVE: I mean it’s about being deaf aware. It’s about taking the time to undertake that deaf awareness training. To acquire sign language skills. It’s about making reasonable adjustments to the healthcare provision that you give. So it’s about longer consultation time so you can actually clarify what information is being passed over. It’s about booking or bringing in a sign language interpreter to be available during a consultation so that the communication is to the level that’s required. It’s about writing things down so that there is a written record of what’s been discussed, and the parent or the child’s got that. It’s about, through the care pathway, ensuring that other providers know the child is deaf.

And so that they are able then, and ready then, to respond to the communication and the healthcare needs of the child concerned.

SHEILA: When I worked in– I worked with children and adults with developmental disabilities as a psychiatrist. And I found that I could do more to help the family if I visited them at home. If I didn’t need any technical backup, I could do that. When I visited them at home, I could spend an hour, an hour and a half with them at home. And it reduced one, the problem of transport for them. But it also meant that I could see the child and understand the situation they were in first-hand. Rather than them having to try to explain to me in a clinic, where they were probably quite stressed.

It also meant that I didn’t have to see them so often I found. And if they did then come to the clinic, at least we had a shared understanding, or a little bit of shared understanding about what they were facing. I think more and more community-based care assessment intervention is going to probably have more impact on people’s lives than always seeing people in specialist clinics.

SURESH: The other issue, even in terms of having an access, having funds, having information, is how the team works. So it is very different how teams work in high-income countries. Absolutely amazing, because they do evidence-based practice. There’s lots of goal sharing. People communicate a lot within the teams. And they think what’s best for the child is going to come from the parents themselves, and also looking at the child’s needs. Rather than being a professional, very strict, and then come saying that this is what the child needs. And this is what as parents you have to. So sometimes this might happen in a context where I come from. You don’t have teams.

And even if they work in teams, the goals will not be shared. So what I’m trying to say is that access, even if it is available, in terms of information, in terms of services, in terms of funds. The final issue would be, how do you sustain the care and support for this child. And then provide rehab and care in an integrated way. So do you work in teams? If yes, do you include parents? Do include the child’s needs in the team? Do you have shared goals? Or it’s going to be some goal which you say is very clinical, and I’m not going to achieve the goal even if it is months and years together.

Or are we going to have a goal that is functionally reflecting on the child’s development. And then saying, OK, this is what is the money that the parents have. This is the time that they have. This is the only person who can take care of the particular child. So in this context, this is what we’re going to do.

ENOCK: The other aspect is for whether, we call it common continued professional development, where this can be internal meetings, feedback and discussions among multidisciplinary team members of the health network, of doctors together. Pharmacists, psychologists, social workers, speech therapist, physiotherapist together if we can have briefings and discussions that will share best practice. We share knowledge. And the advices and tips of how best can we work together. Either referral and the collaborative diagnosis and the management protocols. And maybe and then, last but not least is to look at capacity building.

ROXANNE: So I think keeping a very accurate medical record of what the person has done, what treatment they received what they require after being discharged from wherever they are will help other professionals continue their care and improve the quality of care.

FRANCIS: Then for healthcare providers, who could interface with policy makers, sometimes some of these problems are beyond the control of the healthcare providers on their own. Like maybe increasing access. Maybe getting more rural primary healthcare centres or clinics. That– or providing more equipment in clinics. Or whenever healthcare professionals have the opportunity to interface with policy makers, and those who run their health systems. It is always good to bring to the fore the issues that are faced by children with developmental disabilities.

SURESH: Most of the countries what I am looking at in my experience, does not have policies for accessing healthcare, general healthcare. Let alone rehab care. So you can write documents. You can write white papers, position papers and statements like that. And then make sure that the government understands that then there needs to be inclusion of people who are thinking about the child as a whole. Rather than just calling specialised experts who are doctors with the child. Or paediatric practice experiences, and then pulling them together and making a policy. So sometimes we have to look at advocating the policy makers. Or lobbying with the government.

And then ensuring that whatever happens through the government is also happening in a positive and pragmatic way.