Professor Deborah Bateson has practical advice for ensuring patients with intellectual disability don't miss out.
Screening for cervical cancer can be challenging, especially if your patient has an intellectual disability.
Advanced cervical cancer occurs mostly in women who are under-screened or not screened at all, and people with intellectual disabilities are possibly in this group.
Professor Deborah Bateson, medical director at Family Planning NSW, joined us on The Tea Room with some helpful tips on how to navigate this tricky space.
What do we know about screening rates for people with intellectual disability?
We don’t have national data, but we do know that this is a group who can be left behind. We know that sometimes people can have a negative experience and they never return for another test. And if we are going to eliminate cervical cancer sometime between 2028 and 2035, we must identify the barriers and think about how we can support people to come into the program.
Do we know why people with intellectual disability are missing out?
There’s a variety of reasons. There’s sometimes a lack of awareness by the people themselves. There can also be physical barriers. People may also have sensory and other sorts of challenges that can make accessing a service difficult.
But one of the main reasons is false assumptions around sexuality and being sexually active. Historically, there are those assumptions that people with intellectual disability are not sexually active and so don’t need things like cervical screening, don’t need information about STI screening, and they are just not asked those questions.
There’s been a real shift, I think, in the approach to consultations with people with intellectual disability. I know in my previous practice it was always about assessing and ensuring capacity. That is obviously important, but there’s been a real shift towards supported decision making.
And that’s about finding out what the patient already knows, being clear about what decisions the patient has to make, and really supporting them to make the decision for themselves.
What might a cervical screening consultation with a patient with intellectual disability look like?
Before the first appointment, it’s really useful to talk with the patient or their carer and ascertain if they’ve got any special needs or supports they might require. Each person has individual needs and there always has to be a tailored approach to meet these needs.
You need a longer appointment time as there may be multiple issues to discuss.
Find out whether there’s a preferred time of day when the patient’s going to be more relaxed or more alert, because that’s important for supported decision-making.
And you may require a number of appointments. You might need to explain and demonstrate cervical screening on a model and give information in easy, plain, English to take away. And then that can be followed up with a second appointment.
Ask questions directly to the patient. We can bring in a family member, a guardian, or a paid carer, as long as the person wants them to be in there.
But it’s also good practice to ensure that you can see that person on their own as well, to make sure that they’re happy with that person being there, and they may have other things to disclose. There may be a history of sexual assault or trauma, as we know there are high rates among people with disability.
To allay anxieties and facilitate that conversation, speak at a measured volume and speed and constantly check – is it okay for me to ask you these questions? Because with a cervical screening consultation, we do need to ask intimate questions and not miss out bits of our consultation because maybe we feel it’s going to be embarrassing or shameful. We must ask those questions in a way that’s non-threatening, and not assume things.
It is about breaking the conversation into small parts, asking open-ended questions, and keeping on checking in.
What kind of questions need to be asked?
We want to elicit before we do that cervical screening test whether they’ve got any symptoms which may be suggestive of cervical disease, whether they’ve had a prior history of cervical screening, whether they’re in a relationship and when was the last time they were sexually active.
That term may not be easily understood, so you’ve got to check in to make sure that someone understands what you’ve said.
That’s the gateway to more intimate questions – have you ever had bleeding after intercourse? And again, you may need to be able to explain what that means. It’s important to ask those questions because those are red flags.
And when someone comes to you for a cervical screening test, that’s an opportunity to also ask other questions that you would ask other patients around the risk of sexually transmitted infections, for instance. You may find that there’s a disclosure, perhaps, of trauma or sexual assault, either in the past or even more recently. So you’ve got to be aware and alert to all of these issues.
On the subject of communication, how do you ensure you have informed consent?
We’ve got to always ensure that we’re gaining informed consent, and that’s for every step of the process. With people with an intellectual disability, it is about breaking down those steps.
Really spend that time going over exactly what’s going to happen using models or using diagrams.
Show what you’re going to be doing and explain why you’re going to be doing it: “I’m going to be using this implement here. It’s a soft brush. And this is going to be used on the cervix.” You have a look at it. The person can touch it. I’ve always got a model [to demonstrate how the implement will be used].
It’s also about checking in to make sure that person has a really good understanding and can reflect back to you that understanding of what’s going to happen. And someone may need to go away and have a bit of a think about it and come back later.
So, you’re getting that informed consent before you start the procedure, but then also all the way through – when you’ve asked someone to undress, then to be on the bed – and reiterating what you’re about to do: “This is what I’m doing now, you can tell me to stop at any time.” Building that rapport is so important.
You’re also constantly checking in and allowing that person to say no, I gave consent and now I’m withdrawing that consent. They need to understand that they can consent to being on the cervical screening register. All of those points need to be covered.
In the past it was assumed that people wouldn’t be able to understand these things, there’s no point in explaining. But there’s every point in explaining very carefully.
What is the role of the carer or family member or support person in this process?
That depends on the position of that person with intellectual disability. I’ve worked in this area a long time, and it’s very clear that some people are very happy to have their carer and others are not. And you must make sure that you ask that person to leave so you can actually ascertain that.
Many people want that support from someone they trust, who can be a good navigator for them and perhaps ask questions they’ve asked them to ask beforehand. It’s about developing a shared health literacy.
Is self-collection an option?
At the moment, self-collection has got certain restrictions on it: you have been under-screened or never screened, and 30 years of age or older. But this is all going to change in July of this year when there’s going to be the option of universal self-collection.
In my experience, it has worked very well.
Some people may feel much more comfortable and confident if the clinician is actually taking the sample.
There is also a possibility to have a facilitator, and I’ve certainly done it a couple of times where someone really doesn’t want or can’t tolerate a speculum examination. This way, I’ve been able to facilitate a vaginal swab or self-collected swab. Guidelines on how best to do this are currently being worked on.
We’re going to be finding out a lot more about self-collection for people with intellectual disability and developing resources to support women themselves as well as their carers and families and GPs with these consultations.
Are there legal issues that GPs need to consider in these circumstances?
Absolutely. We’re supporting someone to make the decision for themselves to proceed with a cervical screening test here today. But there may be situations where despite best practice and a few visits, the person is assessed as not being able to make that decision for themselves. In that case, you need to know about your local laws.
In NSW, where there’s excellent information on the NCAT website, you need a substitute decision maker. For something like cervical screening, that will generally be the person responsible, the guardian. And that can often be a parent, it may be a spouse.
It’s not a paid carer.
But there will be that hierarchy. And if someone’s accompanied by the person responsible, then you can actually proceed as long as that that person is not objecting.
So that’s the key thing. You need to be checking in with that person all the time.
And sometimes it may not be possible to do it within the general practice setting. It may be that this needs to be performed in a hospital setting, and that you need to refer on.
The person with the cervix has to be absolutely amenable to undergoing that procedure. If someone says no, it’s no. If someone objects, then you can’t do it. We’ve got to uphold people’s rights.
Where can GPs find useful resources?
There are already resources on our website. There’s a toolkit for GPs, not just around cervical screening but other sensitive areas about STI screening, contraception, about how to support people with disability. There’s a whole suite of resources for people with disabilities and their families as well.
We’ll be developing more extensive resources over a few years, which are co-designed with the community, with people with intellectual disability and doctors who work in general practice with people with disability as well. The idea is to ensure that we don’t leave anyone behind, because we know that this is potentially a group who can be left behind.
The full interview is available on The Tea Room now.
