This blog is the tidied-up transcript from Rosie Tansley and Katie Munday’s talk at Manchester Metropolitan University’s Autistic People’s Experiences of Cancer and Cancer Services event.
There are still free tickets for this hybrid event on March 11th
Our presentation shared information from several cancer service community-based projects we have done together or alongside each other since 2021. The projects were:
Katie Munday
Hi everyone, we’re sharing some findings from “Whatever it Takes Cancer Care for Everyone” on what I would like to change about cancer care as an autistic person today.
Rosie Tansley
Hi, so before we move on to the presentation, we just wanted to give a brief overview of who we are. So the top photo is Katie Munday, who goes by they/he pronouns, and Katie conducts research with neurodivergent, disabled, and gender-diverse people. They are interested in the accessibility of healthcare for these groups. He joined this project because he wanted to support others with similar life experiences. The middle photo is of me, Rosie Tansley, she, her, and I conduct participatory and creative research with neurodivergent and disabled communities. I am autistic myself and have a chronic illness, and I became a community researcher on this project as a disabled individual who wanted to help others access and experience cancer services. And then the bottom photo is Lucy, so she, her. And Lucy is a Macmillan professional and works at Healthwatch. Lucy has over 15 years of experience with the third sector, including working with parents and carers of disabled children and young people at Rose Road.
Lucy is passionate about listening to people and ensuring that their voices are heard and central to their care and lives.
Katie Munday
We are talking about what I would like to say, whatever it takes, cancer care for everyone. How it all started: we began in 2022, aiming to improve the accessibility and quality of cancer services. So anything from information people might be able to read on Cancer Research UK, Macmillan, or other services, such as that, all the way through to coming in for screening, asymptomatic or with symptoms and through to kind of diagnosis, care and aftercare as well. We even spoke to some people who had experiences of family members and loved ones going through palliative care as well. And all the ways they were helped, or should have been helped, throughout these cancer service experiences. The involved partnerships between Help and Care, Macmillan, Bournemouth University Public Involvement in Education and Research Partnership, the Research Centre for Seldom Heard Voices, and Wessex Cancer Alliance. And we worked together to create this piece. Katie and Rosie are employed as community researchers with lived experience. So we led quite a lot of the workshops and the project itself. And we were joined by an amazing cancer nurse specialist, Amanda Durrant, and we also had support from Macmillan.
Rosie Tansley
As part of the project, we ran arts-based workshops and held discussions with four disability groups to hear their experiences of cancer services. Included in these groups were Dorset Blind Association, Bournemouth and Poor Lymphoedema and Lipoedema Support Group, the MS Centre Dorset, and Autism Hampshire’s Fair and Serendipity Group. We were also privileged to have an online interview with a member of RNIB. So that’s the Royal National Institute of Blind People.
And in the photo here, we’ve included one of the workshop photos to kind of show how these went. So we’ve got the handprints that people were invited to decorate, write on, and stick things onto that they felt illustrated their experiences of cancer services. And while we were doing these workshops, we were talking with the members as well to hear their views and experiences. And it was, overall, a really kind of cathartic experience, we have been told, during the actual process of doing the workshops. And obviously Katie and I were able to kind of share our experiences with the groups as well, to really get that kind of mutual understanding between everybody.
Katie Munday
And yeah, attendees shared some really, really interesting things with us. You go into a room, and you say, “Hi, we’re going to talk about cancer.” That can be quite overwhelming. So using those arts-based activities was a really good way for people to talk about things they perhaps wouldn’t otherwise.
This is what attendees wanted to say. These are the themes that we created across all of the groups. And yeah, they’re quite interesting. They speak for themselves:
- I felt inappropriate assumptions made about me affected the quality of my care.
- I felt unsafe during my cancer journey.
- I could not physically access services.
- I felt that important information about my health care is not accessible for me.
- I felt isolated and lonely.
- I felt like I constantly had to advocate for myself because no one was listening to me.
- I felt like there were multiple issues compounding my access to cancer services.
- I feel like there is resistance to change and adaptation to support me
Rosie Tansley
So we also wanted to include quotes from the attendees themselves, in addition to the themes we established when looking at all the findings after the workshops. So we thought we’d spend a couple of slides on some of those because they’re really poignant, and, as Katie said, they speak for themselves and really show people’s experiences. So if I start with the little speech bubbles, the first one we’ve got is “scars heal, but the mental ones don’t.” And “nobody knows the best way for a service to work better than the person who uses it.” And then, in the main text, we’ve got “Care predicated on the normative body type and the restoration of normality”, with ‘normative’ and ‘restoration of normality’ in kind of inverted quote marks. And the second one is I feel like a slap of meat in a process. “If I can’t fit in the grinder, tough shit, I am discarded.”
Another one was that staff assume that a disabled patient cannot process complex information, which is reflected in the way that they are spoken to. And then the final one on this slide is that “it always felt like they just wanted me to go away. You have to make a lot of noise to get them to listen to you.”
Katie Munday
We have a few more here, and these are autistic specific. These were from autistic participants. Alongside a handprint, it was sharing parts of an autistic person’s experiences, who they are as a person, and what is important to them. Saying things like,
They’re a mummy, they’re a sports coach, they’re a friend. Advocacy is important to them. Activism, writing, research, and being autistic and ADHD. And there’s a little picture of a book on there, too. The quotes are many autistic people have had multiple previous traumatic experiences with healthcare professionals, and this is their starting point for the next appointment. So it’s not just how practitioners are with autistic patients, it’s also all of the experiences that those autistic people have had beforehand, almost bringing in, you know, kind of baggage, if you will, or kind of past traumatic experiences that can leave people with a very real fear of being misunderstood, being treated in an undignified manner. And so that’s really difficult to attend appointments if you’re already feeling that, or if you’ve experienced that previously.
At the Serendipity group, one of the first things that one of the participants did was hold up one of the hand prints, the pre-done hand prints, and pretty much, she was very loud, pretty much shouted, “Stop touching me, doctor”, which was just a really interesting and really powerful thing about, you know, consent and making sure that people are consenting to touch and that people understand what touch is going to feel and look like. Another person said, “I wouldn’t feel able to say anything during the smear or say stop unless the nurse had specifically said I could speak or say stop. If their tone is rubbish, I wouldn’t dare say anything.” So, it’s really important that practitioners are very explicit in saying, “If this happens, you can say this, or you can do that.” It can’t just be a given that when practitioners are working with all patients, actually, not just autistic patients, that these unspoken rules or these unwritten rules are actually understood by everybody. You know, they really need to be more explicit. And the last one on here is, it always felt like they just wanted me to go away. You have to make a lot of noise to get them to listen to you. I feel we had that in a previous slide, so that must have stuck with me.
Very much because I appreciate what that feels like, and I know that Rosie does as well with the chronic conditions that she has. And you’re not always listened to or taken seriously. And that goes with another quote that we may or may not have on here about age and being a young autistic person and whether you’re taken seriously when you say this hurts, this is painful, this is not right for my body. So a lot of things that people are coming into healthcare settings with, you know.
Rosie Tansley
Okay, and so we’ve put some other quotes here that kind of show the helpful things, the things that have helped attendees as they navigate, and the things they’ve actually appreciated as part of their journey that have been really supportive for them. So we wanted to put some quotes here as well to show the good aspects of things. It’s not all doom and gloom. We did have a lot of very negative experiences with people, but there were also some really powerful things that have been extremely, extremely helpful in their journeys. And so, kind of the top one we’ve got here is that peer support has been really important for me. It’s been like a lifeline.
So the ability to have people who understand and can get it and support you that way has been extremely valuable for quite a lot of the attendees. One of the participants felt they could ask as many questions as needed, and that the professionals in charge of their care were happy to answer them fully. And I think this is really, really powerful in terms of the lack of judgment and that they didn’t feel that they were judged and that they were able to ask, and they felt safe to be able to ask questions.
And it’s such an important thing, well-being, being able to actually ask questions about matters that are really affecting your health and your care.
Macmillan Cancer Support was described as tip-top for sending me loads of information and doing an absolutely brilliant job. And some hospitals are very good at explaining what is happening, what is happening next, and the options. So both of these talk about the kind of the power of having information and actually being informed about your journey and what’s going on.
And that was something that was really, really important for a lot of people, and myself included. It’s so important to know what you’re going through and what the options are. And then one attendee was referred by Macmillan Cancer Support to Moving Forwards, which is a mental health support group. And this, they felt, enabled them to share their concerns openly in a space where everyone else understood that I might not feel all right, even though I look all right, which I think is really, really valuable, especially because when you kind of like have like a kind of an invisible disability, quite often you can be looked at and think, oh, no, you’re fine. Everything’s fine when you’re not feeling fine inside. So, actually having that kind of validation and understanding from someone has been really, really important for people.
Katie Munday
So now we’re going to talk about the second part of the project, which is, so first of all, we spoke about what would we like to say. Now we’re talking about what I would like to change. So it’s useful to know people’s experiences, but what needs to change now.
What we did for this was focus on solutions, talking with many of the same groups we spoke to previously, which is brilliant. So we spoke to Bournemouth and Paul Lymphedema and Lipoedema Support Group. We went back to the MS Centre in Dorset. Again, we spoke with Autism at Hampshire’s Fair and with the Serendipity Group, which will be the source of most of the quotes today. And we also got to speak to Winchester Go LD, which is a fantastic learning disability group based in Winchester. Findings were grouped into themes and were published in multiple modes. There’s a full version, a large-print version, audio, a video, a summarised version, and a one-page summary, because we wanted this information not just to be useful to researchers and practitioners, but also accessible to as many people as possible.
Rosie Tansley
Okay, so from doing the workshops, we did the kind of very similar style workshops to phase one. So again, we went back and did these creative arts-based workshops where people decorated light bulbs, this time aiming to symbolise what they felt needed to be changed.
And so, in the photo on this slide, we’ve got a light bulb decorated with kind of pink pom-poms, sequins, and feathers, which was done by one of our attendees. And following the kind of discussions and the light bulbs that were made by attendees during these workshops.
We established the following themes, and two of them are on this slide, so I’ll read them out first. So the first theme we established was the need to support patients’ understanding. And this includes things like accessibility to resources, so kind of information about the patient journey, including kind of like maps of the hospital, information about travel, basically things that can support attendees to actually access their appointments and feel that they’re informed about their care, especially when having to make decisions about what they’re going to be doing regarding their care. And also the need to communicate clearly and effectively.
So we had attendees felt that there is such value in clear and effective communication. And we had one attendee who left one of the workshops to attend an appointment and returned to us afterwards. And felt that they weren’t able to access the information that had been given to them about some exercises because of the way that they were communicated to them in the form of, and correct me if I’m wrong, Katie, red pen on a piece of paper scrawled in illegible handwriting. And Katie spoke to this attendee during the appointment and was thankfully able to translate that
Rosie Tansley
information so that they could access. But one of the poignant messages from that is that the attendee wasn’t asked whether they could understand or access the information provided. They were just sent on their way. And without Katie being there to actually translate that and make that accessible for them, they wouldn’t have been able to access those exercises or know what to do, which I think is so, so important for supporting patients as they navigate journeys such as this. The second theme that we got was to take a holistic approach. And this is about understanding the importance of individualised care.
And this includes people, like people have different needs, people have different preferences. There’s a lot of, I mean, myself included, sensory differences that I experience in hospital settings. And when you’re being treated as kind of like a one-size-fits-all, that’s not accessible for a lot of people.
Some people need more adaptations to access the equipment and the screening equipment. And again, if we’re just being grouped into one box and expected to fit within it, then it just means that a lot of the support and processes are inaccessible to us. So, individualisation and personalised care were really, really important.
And this also includes supporting emotional well-being. Cancer services, cancer screening is a physical process, but there is also that emotional underlying thing that goes on as well. And having that emotional support is so, so valuable in helping people to navigate their journeys.
And the final one within the take a holistic approach theme was to appreciate the value of good support and what it looks like.
Katie Munday
Another theme was to ensure the accessibility of practice, so improve access to healthcare settings. That’s telling people how you can get there, people being able to actually get into the doors by themselves, unassisted, making sure that people can take support people with them, but also making sure that if they do bring a support person with them, that you’re still talking to the autistic patient when they’re there. The support person doesn’t necessarily need to be spoken to. They’re part of the conversation, absolutely, but the patient needs to be told what is going on. Improving access to screening and appointments. So again, it’s about making information as accessible as possible. So, when I go in for cervical screening, I usually get a text message. I also got a letter and an email.
But that’s a brilliant way because if I miss the text message or somebody can’t access their emails, or actually, I really need a letter, and I really appreciate the pamphlet that came along with that, it gives people an opportunity to process and understand in different ways.
So, giving people the ability to make different choices about communication is super duper helpful, and making services accessible to everyone is too. Usually when I talk about accessibility, Rosie and I talk about accessibility a lot in cancer research, but also in other research that we do, actually, many of the things that we talk about, about making things more accessible for autistic people,
actually supports the accessibility of all groups of people, because who wouldn’t appreciate better communication, more choice in communication, knowing you can take someone with you, and, if you do, that you are still the person you’ve spoken to.
All of these things actually benefit all patients. Another theme was the expansion of knowledge about disabled experiences. Some of that is really having to work through assumptions, and you know, Rosie and I are not infallible here. I started working with disabled young people about 12 years ago, now in youth services, and at the time had some really interesting ideas about autism, ADHD, and various other things. But you can work through these assumptions.
Now, that can be reading books, that can be reading research, if you enjoy that and you have time for that. But also a lot of that is being able to access things on social media, the people that you follow. There are so many fantastic autistic advocates out there doing work on social media, Instagram, Facebook, wherever you engage with social media. So, find some of these people and engage that way as well. It doesn’t have to be a lot of book learning unless you really, really want it to, in which case, oh, there are millions of books out there you could read. Recognise and appreciate national disability initiatives. When we were talking to Winchester Go LD were actually really keen on talking about this, but so was the autism group about the invisible disabilities sunflower lanyard.
And many of the places that people were going to actually said, yeah, that was pretty good. People kind of understood what was going on and thought I might need a bit more time and stuff like that. And it’s really great because then people don’t have to say, you know, I’m autistic and I need all of these things. You can just have this sunflower lanyard, and some people, most people,
understand and kind of appreciate what that might mean. But that’s not across all services. And on the flip side of that, there were also cases in which people had the invisible disability sunflower lanyard and then was kind of spoken down to as if they were childlike.
So, it’s just understanding that it’s a really good visual tool for people, but it’s only as good as the people who are picking up that it is a tool to be used. Also, things around, we had conversations about hospital passports. Many of the people across all the groups we spoke to didn’t know that hospital passports existed. I’ve gone in for treatment before, you know, only about five or six years ago now. And I didn’t even know it existed. And I say myself as if I should know because of the work that I do. So that needs to be made clearer. It needs to be made more accessible.
And also that staff understand that this is something that happens and should happen and can happen for people who are diagnosed with being autistic or being otherwise neurodivergent, but being disabled as well, makes a big, big, big difference to our care if practitioners have this access to this information about ourselves, what we need, what we might be allergic to, our medications, all of these kind of things, really, really great.
I know that the National Autistic Society also has its own version of this hospital passport, which is really great. and take a more empathetic approach. We appreciate that as practitioners.
Practitioners are, you know, tired. I’ve worked underpaid, absolutely 100%. But taking a more empathetic approach to your own needs as a practitioner makes it easier for you to look after others, be empathetic, and slow down. Even though I appreciate that your time with patients is very strict because you’ve got to see loads of people. It’s about taking that time and allowing things to slow down just a little bit, within the realm of possibility, because you might find that actually makes it easier for you and the patient.
Rosie Tansley
Okay, on this slide, we’ve added links to other things we’ve been working on related to this project. So the top link is our published journal article, which covers the first part of this project, so the what I would like to say findings.
We’ve included a link there as well, so people can access that. For those that want to access the actual report that was produced following the what I would like to say project, so phase one, we’ve included a link there to the second section. And then the third part: we’ve got the ‘what I would like to change’ research report. So
I believe this link is also repeated earlier on the ‘what I would like to change’ slide. But again, if there’s anyone wants to access that, they can access the report here. And then the link below is about the cervical screening for trans plus autistic people, a tool for self-advocacy zine.
And I believe Katie will mention a bit more about this on the following slide, since that’s a project they’ve been working on. And then the final bit is a second journal for a community nursing paper that’s coming soon. So this paper has been in the works for a while. It has been accepted by the journal, and we are just waiting for it to be issued. And once that’s issued, we could send the link so people can access it as well. So that will be another journal article for this project.
Katie Munday
So, we’ve done what I would like to say, what I would like to change.
We’ve spoken to people about their feelings about cancer services and their experiences, what they think the solutions are, and now we’re putting that into practice. We are doing this with the University Hospital Southampton with their breast and chest screening team and we’re reviewing the unit at Princess Anne Hospital Southampton through an accessibility lens and through a trans and gender affirming lens, because this is in partnership with our sister project, Trans Aware Cancer Care, which is similarly funded by Macmillan and Wessex Cancer Alliance with help and care and a local charity called Beyond Reflections, a trans plus charity. It’s really important.
I wanted to share about Trans Aware Cancer Care and the cervical screening advocacy zine I created with Ge Rivers, because there’s actually a larger overlap between being trans and autistic than you might think. So, it’s really important to understand that intersection and how things can be amplified for trans people who are also autistic, especially for going for intimate care, such as cervical screening. And we’re going to be reviewing things such as physical access to the buildings, materials, including letters sent to people, emails, phone calls, and other aspects of the units. And those findings will be shared with the community to co-produce solutions.
So, that’s really important in this kind of research that you don’t just say, well, these are the experiences of people, which, quite frankly, for people like Rosie and I, who are autistic and are part of the community that we do work with, is not a surprise but there needs to be a foundational basis for our work. So it is really important for us to document what we already know, but also to say what we can do about it and actually start doing things.
