Latest / Rad Chat / E209: Noreen Hawkshaw, Prof. Laura Ashley and Jill Quinn MBE - Dementia and Cancer
Transcript
- Jo McNamara Rad Chat Host (00:00) Hello everyone and welcome to Rad Chat, founded by me, Jo McNamara. Naman Julka-Anderson (00:04) And me, Naman Julka-Anderson. Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their expertise in therapeutic radiography and oncology. Unlike traditional academic resources, we blend real-world experience, expert insights, best practice, and patient perspectives. Jo McNamara Rad Chat Host (00:21) We make advanced knowledge engaging and accessible, supporting continuous learning and professional development without compromising patient care or your personal time by providing insights into both technical skills and career development, helping you to progress confidently in your field and shape your professional future. Naman Julka-Anderson (00:38) Just to let you know, our episodes may contain sensitive and difficult topics that you might find distressing or triggering. Please consider checking out another episode. Jo McNamara (00:48) So this is episode 209, which is part of the Education and Workforce Development series, where we're going to be hearing from our guests, Noreen Hawkshaw, Laura Ashley and Jill Quinn. So we're going to be talking about dementia and improving cancer outcomes. So welcome all to Rad Chat. We're really excited to have you welcome us all. It's been a while since we've had such an amazing big large panel of guests. So we're really excited. Jill Quinn (00:58) Okay. Okay. Noreen Hawkshaw (01:12) you Jo McNamara (01:14) Laura can you introduce yourself for us please, tell us a little bit about yourself and what you do day to day. Laura Ashley (01:21) Hi, thanks for having us on. I'm Laura Ashley, Professor of Health Psychology at Leeds Beckett University. I guess my research mainly focuses on people with multiple long-term conditions and looking at ways that we can improve access to care and experiences of care and patient-centred outcomes particularly cancer related care for people that have pre-existing conditions like dementia. Jo McNamara (01:51) ⁓ thank you and a pleasure to have you join us. We're going to move over to Noreen, can you tell us a little bit about yourself and your background please? Noreen Hawkshaw (01:59) Yeah, certainly. Hi everybody. So I'm Noreen Hawkshaw and I'm the Lead Cancer Nurse at Harrogate District Hospital. I'm proud to say that I have now just recently completed 40 years working as a registered nurse in the National Health Service and about, probably about 30 of those years have been in cancer nursing and have been really lucky to have the role of Lead Cancer Nurse at Harrogate Hospital for the last 10 years or so. And that rolls really very much around ensuring that the cancer care that is delivered is of a good quality, that patients have a good experience, and that that care is personalised to that individual so that we ensure that what matters to that patient is considered and listened to. A big part of what I do is ensuring that we have a cancer nursing workforce for the future that's educated and trained to be able to care for patients for the future. But yeah, very much is around ensuring good quality care where patients have a good experience. Jo McNamara (03:00) Lots of experience. Thank you so much for joining us. I'm excited. And then lastly, Jill, are you okay to introduce yourself? Noreen Hawkshaw (03:02) you Jill Quinn (03:08) Yes, sure. I'm Jill Quinn and I'm the CEO but also the founder of a North Yorkshire wide charity called Dementia Forward. I left a national charity, I worked for more than one national charity in my time, with the sole purpose of making sure that services were more connected to communities because of capacity issues, know, we all know the numbers of dementia are going through the roof and it was about being able to resource that, intending to start a small fluffy charity in the Harrogate district of North Yorkshire. But we've built a model of wraparound care now from pre-diagnosis to end of life that has been so successful that actually we've expanded and we now cover the whole of North Yorkshire, supporting over 5,000 families actually. And part of that is understanding that everybody's different and people do come with other comorbidities and complications in their lives. It's not purest dementia really, but dementia is at the core of everything that we do. Jo McNamara (04:03) Jill, what made you start the charity? Jill Quinn (04:06) Primarily frustration. But I do love the voluntary sector. I think we can be so responsive. And I was too constrained by the formalities of a national charity and enjoyed building it from the bottom up by listening to people and making it what they needed. And it's an absolute joy, manic but an absolute joy to achieve that. Naman Julka-Anderson (04:31) Do you have an MBE as well Jill? Jill Quinn (04:33) For my services to dementia, yeah, I got an MBE and actually that on top of the fact that we got a King's Fund Impact Award and a Queen's Award for volunteering, I don't claim many of those by myself. It's a real, yeah, it's a real exciting success story. Naman Julka-Anderson (04:49) And Noreen, why did you pick nursing? Noreen Hawkshaw (04:51) Goodness, wow. I don't know, I love talking to people. I love listening to people. It just gives me a real buzz and constantly just feel motivated going to work. No matter how challenging it can be, and it can be very challenging often. There are many days where I don't know how I'm going to solve certain situations, but yeah, it's just... It's a privilege, you know, to see people in such vulnerable situations often, to try to support them and try your very best to make things easier for people is a huge privilege. But yeah, I'm just a people person and enjoy that opportunity to meet many different patients and families, but also like we're doing here and like we've done with the programme is to collaborate with other people and working within an acute trust now to have the opportunity to work with community organisations, voluntary organisations, other educational institutions is just an added pleasure really to the role and something that we hear so much now whereby giving patients the opportunity to have care and support closer to home rather than in secondary care is absolutely the right thing. Jill Quinn (05:47) Okay. Jo McNamara (06:01) It does sound like a dream team, doesn't it? Charitable sector, NHS and then Higher Education Institute research. sounds absolutely amazing. So Laura, tell us about what actually kind of started this whole entire journey, really. Jill Quinn (06:09) Okay. Laura Ashley (06:17) Well, I guess it was as many things are. It's not necessarily by design. I got chatting to someone who had joined the university and they had a background in dementia research and I had predominantly been working in cancer research, both from a psychosocial care angle. We had a chat. over a cup of tea and I think you can see where we ended up going. And we've been doing research in this area I guess for about 10 years now, exploring how pre-existing dementia can complicate cancer related care for people living with dementia and their family members across the cancer trajectory. So from a diagnosis, having cancer treatment, end of life care, looking studies in hospitals, primary care, acute oncology services, to have done quite a few different sorts of studies in the area. Naman Julka-Anderson (07:25) Can I ask for something like this, how do you navigate the funding? obviously research can be hard, you have to keep looking for different grants and stuff, but when it maybe hasn't always been talked about as much, how do you navigate it? Laura Ashley (07:25) I guess. So funding is always a challenge and you know you're statistically likely to be rejected with your applications but you know have to keep on trying. For whatever reason we we have managed to be successful insecure in external funding for much of this work. Our very first collaboration was a PhD student funded through the university and that's often a way in, you know, when you haven't done anything before. And then we managed to secure NIHR, Research for Patient Benefit grants. So a grant from Alzheimer's Society for a PhD student in the area from Abbeyfield Research Foundation for a PhD student in the area. So we've been lucky with the NIHR and the charity funding. Jo McNamara (08:26) So Laura, from your first initial pilot, what did you actually discover? Laura Ashley (08:30) Well, the PhD student study was focused on carers and their, I suppose, the challenges for them psychosocially and their, well, unmet information and support needs. And what that revealed, probably not unsurprisingly, is is just how challenging the carers could find it. You know, many of them felt stretched and near breaking point as a carer of somebody living with dementia. And then when the cancer came on top of that, that often felt like it pushed them past a point. They struggled with decision-making about treatment, what to do for the best and... Jill Quinn (09:02) . Laura Ashley (09:14) worrying whether they've made the right decision whichever route they've chosen. The emotional support side of things, they often felt it was difficult to find a peer to share concerns with and seek advice from because they felt there was dementia related information, you know, on this side and cancer related information on that side. And they couldn't find anything that brought the two together. And as a result of that, we set up a subsection of Alzheimer's Society's online peer support forum dedicated to cancer related concerns so that there was a place to direct the carers specifically to talk about cancer related concerns within the context of dementia. A small but very useful change. Naman Julka-Anderson (10:09) It's interesting when you hear it back like that because the NHS often is very good at focusing on one specialty. And I think when there are, there's a hospital trust where one of our patients with multiple comorbidities has six different appointments a week in different hospitals, it really starts to show. And obviously like cardio-oncology, we've been pumping people with chemotherapy for decades, but it's only recently people are starting to consider there might be a proper link and it's similar to this, isn't it? What is the incidence for dementia and cancer? Jill Quinn (10:33) Okay. you Laura Ashley (10:37) Well, it very much depends on where you get the data from and which group of cancer patients you take, obviously, but the simple answer, I guess, and we have collected some data on this ourselves using primary care data. For people aged 75 and over, we found one in 13 will have a pre-existing dementia diagnosis, but dementia is underdiagnosed. Jill Quinn (11:03) Okay. Laura Ashley (11:04) So it's probably closer to 10%, one in 10. Jo McNamara (11:14) So Noreen, from your clinical experience, what have you observed clinically in cancer patients then presenting with both cancer and having dementia as well? Noreen Hawkshaw (11:24) Yeah, yeah. Well, I think it's really quite a specific question that from a a Harrogate and District perspective, we've, Harrogate and rural district has a higher than national average number of people over the age of 65. So inevitably, dementia is, is obviously a condition seen more in in the elderly population. And as Laura says, we do have higher incidence of dementia, but there is also within North Yorkshire that area, that significant number of people with that are undiagnosed with dementia as well or memory problems. So we do have a number of individuals who will be diagnosed with cancer within the Harrogate area that as Naman says have a significant number of other long-term conditions going on alongside their cancer. Jill Quinn (12:14) So. Noreen Hawkshaw (12:15) which makes things really challenging. But from a dementia perspective, that's really difficult for people coming into a hospital setting, having to attend for clinic appointments, you know, just being diagnosed in the first place. I'm sure Laura will come on to say just having that, recognising abnormal symptoms in somebody with dementia is... is difficult for them. They may not notice that they've got an altered bowel habit or have a breast lump or a new skin lesion. And inevitably, if that's not picked up in a fairly timely manner, then they could go on to present with fairly late stage cancer, which clearly puts them in a group where they're less likely to have a good outcome. And just coming into a hospital setting can be really challenging, having all of those diagnostic investigations done noisy environment, unfamiliar environment, and then coming to find out about what that cancer means for them. Do they understand what they've been told? How do you ensure that they understand that information and what's appropriate for them from a treatment perspective? So it really does impact in so many ways when a patient presents or a family member, it might be the partner that presents with the cancer and they've got somebody that they're caring for that has dementia. there can be multiple things to think about. Naman Julka-Anderson (13:42) How do you manage expectations of the care? Because obviously, I think I always think back to manual handling as an example of how someone has been caring for someone for so long and they have a specific way they pick them up off the bed and we obviously have our own ways through the NHS what we've been trained. But how does it work around consent for diagnostics and treatment? Noreen Hawkshaw (13:53) Yeah. Yeah. Well, it can be hard. think sometimes when a patient is referred in, perhaps on an urgent suspected pathway, in an ideal world, we would know that they also had perhaps dementia, but as we've already said, they may not be diagnosed or that information doesn't get through. So you're presented with a patient and perhaps a family member and you don't know the full story. You don't know that they may not be understanding everything. But from a point of view of consent, it's hard, isn't it? It's about enabling them to have the time to have the conversation to understand. And that may well mean multiple consultations for them to be able to understand. And for me, it's about listening to what it is that the carer especially is saying about how they manage the situation, about how they cope at home and when you have this situation that's really turned their lives upside down with something else to think about and contend with, it's about listening to them. It's about using and signposting to all of the different organisations that are out there. I think as a nurse, as a cancer nurse, you're always minded to try to fix things and you can't always fix everything. So it's about remembering Jill Quinn (15:05) . Noreen Hawkshaw (15:17) the organisations that are within the community that can help individuals and their families. obviously collaborating with an organisation like Dementia Forward has really kind of revolutionised how we can support these patients and their family. Jo McNamara (15:32) Which leads us beautifully on to Jill. Jill, what's your experience been like for patients who are diagnosed or being diagnosed with cancer and then obviously having to navigate the entire very complex treatment pathway, which even for someone who is well at the point of diagnosis can be really challenging, both emotionally but also just logistically really challenging. What's been your experience of kind of with the charity, but also just liaising with lots of these patients? Jill Quinn (15:34) Okay. Jo McNamara (16:01) Thanks. Jill Quinn (16:02) I think before we started this lovely project we had already realised, the teams of dementia support advisors had already realised that people going through cancer and dementia at the same time or carers who had cancer, we were aware that they weren't accessing the treatment in a timely way. We knew that they were sometimes not prioritising those appointments. And we knew also there was a sort of defeatist attitude almost because the dementia in itself is overwhelming, as Noreen said, before you have any other diagnosis on top of it. it was a relief really to be able to work with other professionals, know, the likes of Noreen in her professional world and be able to tap into that knowledge and expertise. We started off by making sure that each of the teams were trained and also that they formed really good relationships so that we're only a phone call away, we can discuss the best way because each time it's going to be slightly individual but also going to the extent of looking at the environment where people are going to go for their diagnosis and their treatment to ensure that we've done the best job we can to make that work for people who have dementia, constant reassurance. And I think the biggest thing in our world of dementia is that there are huge gaps. And the reason we designed our model the way we did was our intention is to not let people fall through those gaps. So we are a proactive service. So we don't wait for somebody to ring us when there's a problem or a looming crisis, we're actually reaching out to them. And one of the initial things we did as well was ensure that we began with everybody where we could recording on our database when somebody did have that dual diagnosis and moving them up to priority in terms of the welfare calls that we make and how regular we stay in touch with that family. To me, it's like a virtual net around people to stop them falling through gaps, but probably the biggest joy was having the two teams able to communicate really well with each other. I am just going to throw in there that one of the hiccups that we've solved at last was the sharing of data across the systems. And that could easily have been a stumbling block, but we didn't let that happen. And now we're all getting along with that well. I understand why the NHS has to be right on it with data, but it was a slight frustration, but sorted. And it's proof that we can do this, that we can work across all these sectors like we do. And learning from all that Laura had already done was reassuring as well that we weren't getting it wrong. We were mirroring a lot of what had already been found, but in bigger numbers with lots of people now benefiting from it. Naman Julka-Anderson (18:52) Jill, you talked about the welfare cause. How do you train people to do that? And how do they look after themselves after they do those talks? Jill Quinn (19:00) It's very varied. So I have quite a large team of dementia support advisors and memory support advisors or even dementia activity workers because we look at well-being as well. And some of those team are the people who make those proactive reach out calls. But I have to be honest, they never know what they're going to get. It's a bit like cold calling and you may call on a good day, but you may call on a bad day. We do also run a helpline so people can call in as well. So it's actually the biggest part of the training is resilience in those team members so that they have that, they feel empowered to make that call and deal with what drops out of it. And sometimes that can be a tiny bit of advice, but sometimes it can be more ⁓ emotional support, encouragement, and it may lead to us having to bring in other organisations as well. And sometimes it's practical stuff like transport, you we live in North Yorkshire, it's not easy. And actually, it would be too easy to say, well, there's a bus service or a taxi, but when people are feeling ill, vulnerable, confused, all at the same time, we have to make sure it's the right taxi at the right time. So we're dealing with emotional stuff, practical stuff, and really just being there and not letting go. People, I hope, feel held. Jo McNamara (20:25) So Laura, tell us a little bit about the Cancer Alliance and working with them and how the project came to actually start. Laura Ashley (20:31) Yeah, so the West Yorkshire and Harrogate Cancer Alliance kindly funded, I suppose, a pilot, proof of principle. Is it feasible for the NHS cancer team to work, you know, in a meaningful way with a local dementia charity? And I suppose there were different strands to establishing this, some of which we've touched on. So the information sharing, unsurprisingly, was a hurdle, but it's been overcome. And I think that is key because otherwise you are placing the onus on the person with dementia or the family to go and contact the charity. It's just a signpost. It's not doing that work for them, it's placing more illness work on them and doesn't allow information sharing so that the advisors at the charity can best talk to people about what's going on in the cancer. It's not collaborative then is it? If it's a mere signpost to another organisation. So I'm really pleased that the information sharing's happened and there was training sessions so for the cancer team and for the staff at Dementia Forward, sort of a three parts to that you know, a bit about what is dementia for the cancer team. And then some of the research findings around the particular challenges and difficulties that this group might face when they're having cancer treatment and then ways in which dementia forward could help to support, you know, people living with dementia in the families while they were undergoing the cancer treatment. And then taking questions, which helped us to... refine the next training session as it were. And I think we've proven the principle. And we have recently applied, well, Jill has applied for some further funding to extend the workout geographically and refine it to continue to build on what we've done. Jill Quinn (22:49) Yeah. Yeah. Naman Julka-Anderson (22:51) Can I ask you really nerdy question, Laura, and don't judge me? Because you've talked about the information sharing. I'm just thinking of other people who might be trying to do similar partnerships. How did you, or how did anyone navigate the information sharing? Is it as simple as having a shared document online or something? Could you talk us through it? Laura Ashley (22:55) I love my math question. I'm an academic. well, that's actually not a question for me, thankfully, because the information sharing was something Jill had to conquer. And I'm not quite sure who you devolved that to, was it Kevin? Jill Quinn (23:13) No. Yes, it was. I'm blessed with an ops ⁓ manager who is very, very techy. But I have to tell you that at the beginning of the project, he looked at what the NHS wanted him to do and said, no, because actually that feels like a sledgehammer to crack a nut. Why would we jump through all these hoops? mean, but because he realised what a stumbling block it was, or we didn't realise at the time when we realised what stumbling block it was, he committed to it. That involved us rewriting quite a few policies, redesigning our in-house training. It was very involved. It's called the NHS Toolkit. And I'm sure to people within the NHS, that's absolutely fine, but we're relatively small charity. And when it comes to policies, that's either me or Kevin. So we just had to wade through it. And it was a good moment when we got our certificate. And that will bode well because as Laura says, the hope now is that we're going to expand this across the county. And by the time we've done it in two, three, four hospitals, the model should be slick enough that it doesn't need perhaps as much intense input as we've had to put into it as a team. So it's been worthwhile. It was a swear word within the office quite sometimes. Noreen Hawkshaw (24:37) Okay. Naman Julka-Anderson (24:39) Well done, Kevin, if you're listening. Jo McNamara (24:40) You Jill Quinn (24:41) Yeah. Noreen Hawkshaw (24:41) It was absolute determination. Jill Quinn (24:44) Yes. Naman Julka-Anderson (24:44) Have you given Kevin a bonus or anything? Sounds like he deserves it. Jill Quinn (24:49) A bottle of red wine and a large round of applause for the certificate was revealed. We're quite proud of it actually, it's framed. Noreen Hawkshaw (24:56) It was utter determination on the part of Dementia Forward that got that over the line. And I think, you know, as Jill has said, for them to take forward with different trusts, you know, is going to be brilliant. for us within an acute trust, Jill Quinn (25:02) Yeah. Noreen Hawkshaw (25:14) a lot of what we're looking at now around cancer care is what can be done closer to the patient's home. So one of the things that we are looking at doing is working with lots of different organisations, voluntary organisations, councils, loads of different community organisations. And the same applies, you know, to exchange information in a safe, confidential way is absolutely the right thing to be able to offer that seamless care for patients. So it's something that we need to get much better at, obviously in a safe and confidential way, but it's so important so that we can offer the care closer to patients' home, which is the right thing to do. Jill Quinn (25:55) Yeah. Jo McNamara (25:56) And I think if we could, the NHS would love to be able to provide all of this holistic care and support and community, you know, social work essentially, but they just is not the resources. So amazing charities like Jill's is absolutely fundamental. And I am sure for anyone listening who's part of a small charity, Jill, I'm sure they'll be ringing you up eagerly to go, can we have Kevin for a few weeks to help us? Jill Quinn (26:18) I did. I did actually suggest that to Kevin, but Kevin in true op style because of course he's very involved in the finance as well. said well it's something we could sell, could offer to do that education but no we wouldn't charge and yes if anyone is listening don't let that be a blocker, wouldn't that be a shame. Jo McNamara (26:43) Yeah, absolutely. And I can absolutely see in lots of ways how that partnership working will improve patient experience. But also for NHS staff, Noreen, I'm coming back to you, but I absolutely know one of the challenges that I often face just through the work I do with Rad Chat is people messaging through social media saying, I'm having these issues, who can I go to? Noreen Hawkshaw (26:55) Absolutely. Yeah. Jo McNamara (27:06) And it's so difficult because of postcode lottery, the fact that there may not be any resources for that person. And even when they go to their oncologist or their CNS team, they're at a loss of who to kind of send these people to. Noreen Hawkshaw (27:08) Yeah. Yeah. Yeah, of course. not the right people, are they? They're specialists in cancer care and cancer treatment. If an elderly lady is living on her own and coming into hospital for an operation but needs somebody to look after her dog, a cancer nurse specialist isn't... It's about signposting to the right people to help people at the right time. And we've got to get much better at that because... Jill Quinn (27:40) Yeah. Noreen Hawkshaw (27:46) secondary care acute trusts are not the right people to help with a lot of the concerns that really matter to patients. Jo McNamara (27:54) But can be quite demoralising, can't it, for us as NHS staff to go, we want to be able to help, but we're literally at a loss and with the sheer number of patients. It's so difficult. It can be to the point that some people leave these professions because they feel like they're not able to do enough for people. Noreen Hawkshaw (28:04) Yeah. Yeah. Yeah. Yeah, yeah. And I think across our alliance, West Yorkshire and Harrogate Cancer Alliance, we're moving more and more towards that community model of care where we work really closely with our partners. Jill Quinn (28:24) Can I just say this well? Naman Julka-Anderson (28:24) Thanks for Jill Quinn (28:25) There's a little nugget in there as well that I love and that is that there is always hope with the cancer of course that people are getting treatments but unfortunately for dementia there isn't a cure. So there is every chance that a person will go through that cancer treatment successfully and my sort of vision of it is that then Noreen and her wonderful team wave them off but they know that they're still living with a condition that is going to continue to progress and they know now that those patients will still be with us. We haven't got to let go. And I would imagine that is reassuring to professionals who are so caring that they've got to know those people and they won't want to wave them off into the sunset with this progressive illness without knowing that they've got support. And that's already embedded because that's already happened along the route. Naman Julka-Anderson (29:21) Noreen, when I worked in my first like band five job some of us were going to get training to be dementia champions. I don't know if that is something I know that you've seen more widely as well. Noreen Hawkshaw (29:31) Yeah, yeah, definitely. Across every acute trust now you see dementia champions on the wards and certainly from within cancer care and our clinical nurse specialists, our cancer care coordinators, our dieticians, clinical psychologists. We've all given them the opportunity to undergo the education and training program that Laura and Jill have been talking about. And it is just those simple things. It's not about learning things that are quite challenging and difficult. It's about when you're undertaking a holistic needs assessment or meeting a patient for first time to find out more about them. It's how do you find out that information about whether they have dementia? Because the patient themselves might not even know. So it's about how do you word the question? Do you have memory problems? Has anybody in your family got some memory problems? Do you feel a little bit more forgetful of late? So it's just about how you draw that information out of a patient and their family is crucial. And that's what a lot of the team have learned to be able to do. And we're also a lot better now at looking at our environment within the cancer unit, but across the organisation. You know, what is it that patients and family members with dementia find challenging within a hospital? Shiny floors, certain colours, all of the noise, know, clocks, clock faces, all of that kind of thing. We've got signage so that people can recognise where the toilet is, just to make things so much easier because we've made massive assumptions and we haven't fully appreciated how it is for somebody with dementia. Yeah, so it's been fantastic to learn and has generated a lot of discussion. And again, that connection, it's been more than just the education and training. It's the connection with the new organisation has been wonderful. Jo McNamara (31:28) Have you found, Noreen, that actually by doing those changes, it's also improved patient experience for other cohorts of patients? Jill Quinn (31:28) Okay. Okay. Noreen Hawkshaw (31:37) Yeah, I imagine that it will have done. think what we obviously take part in the National Cancer Patient Experience Survey on an annual basis. We also do local patient experience surveys as well. Our cancer unit, the feedback that we get from the vast majority of our patients is wonderful. And a lot of it is down to the environment, know, just walking into an area where people feel it's light, it's airy, it's got the appropriate flooring. All of those things are recognised by people and we get comments about our environment so much and that's nothing to do with, you know, how people, how the staff interact with them, just that an environment can help so much. Naman Julka-Anderson (32:22) Jill, don't know if the charity supported any different background heritage or cultural background people who've been going through dementia diagnosis and then also cancer. Jill Quinn (32:31) Yes, I'm going to say yes. I'm pretty sure I've got the right people in mind. I don't get to see everybody, but we are acutely aware of some of those ways in which we need to support differently. Caring roles within some cultures are very different, but also we've done a large piece of work on the LGBT community and that certainly as well comes into play. But I don't know that, I think probably, Noreen's workforce will be skilled at that and we are within within dementia. It's not something we take lightly. We spend a lot of time trying to get that right. I don't know that it, I think we just apply our normal standards of working out normal ways of working and it is stuff that we do gather that kind of evidence when we're doing our assessments and I'm pretty sure Noreen will as well. Noreen Hawkshaw (33:23) Yeah, of course. think Harrogate and rural area isn't a particularly diverse population. We have a growing number of ⁓ Eastern European population, but significantly we don't have a particularly diverse population culturally. But it's looking at the individuals and the communities that we do have. It can be some of the areas that people live as quite isolated. Jill Quinn (33:25) Yeah. Noreen Hawkshaw (33:47) We have quite a significant farming community and often those communities really care about their farm, their animals and sometimes that may well care about sometimes more than they perhaps should be caring about themselves as well. Just because it's their livelihood and they have to be there every day. So it's interesting, but I think... Jill Quinn (33:48) Yeah. Noreen Hawkshaw (34:10) I think isolation is a huge thing for our communities and it's that travelling as well. You know, it can be very difficult for people to come, especially when they have to go to the tertiary centre for treatment as well, where it's a significant travel involved for them. So yeah, I hope that answers your question, Naman. Jill Quinn (34:30) There is one other smaller group, well they're actually, but young onset dementia is a passion of ours because it's a bit of a vacuum and that complicates it further in terms of finance and employment etc. And we have a specialist young onset team and we're happy to get involved in those conversations with employers and to make sure that everybody's got the benefits and stuff that they're entitled to and I know Noreen's team also do that kind of information and advice as well. it's not, you know, there's other stuff around the whole family that we need to consider and both organisations are good at that. So it's good. It's a wraparound support. Noreen Hawkshaw (35:10) Yeah, one of the biggest concerns that people talk about is financial concerns. And, you know, in the current world that we live in, that's a real issue for many people. We have a Welfare and Benefits Advisor who works full-time actually within the organisation. And the feedback that we get from there is phenomenal. That really... Jill Quinn (35:27) Yeah. Noreen Hawkshaw (35:31) can make the difference between somebody being able to make it to their appointment and having the next meal and that's not, you know, that's not exaggerating. Jill Quinn (35:38) And also our links in social care, because we're linked very closely with social care on all our cases, we make sure that that side of it is covered off as well. Make sure they get all the assessments that they're entitled to. Jo McNamara (35:39) and they've... was going to say for anyone who's had to complete a benefits form, what is it like a 60 page document? It's absolutely immense. And I was chatting with an oncologist who said that their patient was literally end of their tether trying to do this benefits form. And he read it and he said, I know everything there is to know about your cancer and even I can't complete this form. yeah, absolutely having specialists really important. Laura, as an academic and researcher, what's been your biggest learning? from this entire project. Laura Ashley (36:22) Ooh, biggest learning. I think a couple of things that have been touched on. it's those cracks, fall in between cracks, which can happen when you have the two conditions together. I've done some work around diabetes and cancer, and that can create similar cracks that people feel they fall down because... professionals can feel that something somebody is experiencing, well, that's down to that illness they have, which is someone else's expertise or job. And so we'll leave it to them. And so you can have different professionals leaving it to other professionals. And therefore it's actually the onus is on the patient and the families that that tends to be a recurring theme across the multiple long-term conditions work and the lack of information that is provided by the NHS or by charities, because charities tend to be single disease focused as well. so information that deals with the complexities of two conditions at the same time can be lacking, as can peer support, you know, finding people that are in exactly that same position. Jill Quinn (37:25) You Laura Ashley (37:41) These are recurring themes no matter which conditions we're looking at. And I think the other thing is if you don't have any of this information or these peer support forums then professionals are understandably reticent to bring some things up. So I've had oncologists say in interview studies Well, I don't like to ask carers how they're doing, know, the carers of the people with dementia, because I haven't got anything to offer them. that they, know, and carers will say, nobody's asking about me. I'm near breaking point and so nobody cares about me. But the staff feel, well, I don't like to ask because what do I do then when they say they're struggling? Whereas if there is this partnership with the charity and a greater awareness that there are now some information and peer support resources out there. We've helped to create some of these from the research. There are some things to signpost people to, it feels ⁓ that professionals can perhaps open conversations now because they have something to offer. Jill Quinn (38:47) you you Jo McNamara (38:57) Would you agree with that, Noreen? Noreen Hawkshaw (38:59) I would definitely agree with that. I see it so many times with clinicians, medical staff, nursing staff, allied health professionals that you don't go and ask the question because you're frightened of what they're going to ask you and you won't know how to answer it. You you won't know where to signpost them to. You won't know the, you won't be able to give them a meaningful answer, if you like. I think just thinking when Laura was talking there, you know, prior to this project, if people had said, do you think patients at Harrogate get all patients get equitable care? Perhaps maybe would have been slightly naive in kind of saying, yeah, yeah, I think I think they do get equitable care, but there are clearly groups of people who don't get equitable care. And I think this project has allowed us or enabled the Jill Quinn (39:26) Okay. You. Noreen Hawkshaw (39:49) the acute secondary care sector workforce to really think about providing equity to all patients. know, who are young that can speak, that can articulate what they want and what their concerns are. But then when you think about certain groups who, as Laura says, they don't ask and we don't ask. or we don't listen perhaps and we miss things and people aren't getting that equitable care. So I think this project has given us an opportunity to really think about yes actually the care that we offer this patient group is more equitable. Jill Quinn (40:31) Good point. Noreen Hawkshaw (40:34) You Jo McNamara (40:41) Okay so we're coming to the end, we could probably chat all night because it's so interesting to hear all of your different perspectives but we always end Rad Chat podcast episodes with top tips and actually as we've gone through quite a few tips have come out but I'm just thinking about your own kind of background and your areas of expertise. Jill for patients and carers out there, what advice and support would you give them from a charity's perspective? Jill Quinn (41:10) We need to encourage people to reach out and an expression we use all the time is you don't know what you don't know and often there are solutions and often it's those small things that can make a big difference but we have to be connected with those people so I would encourage people to reach out and find out if there is something there for them. Jo McNamara (41:36) Noreen, for healthcare professionals who maybe are working in oncology and or even within the health service and come across dementia patients, what advice and support would you say to them? Noreen Hawkshaw (41:48) I think it's easier, I think it's listening to what people tell you. And you can say that for any group, but I don't mean just listening, I mean really listening, really understanding and trying to listen to what matters to that individual. And it may take longer, you may have to spend a little bit more time and time is so valuable but if you just give them a little bit more time, they may well just have the opportunity to open up and express themselves a bit more. Jo McNamara (42:16) And Laura, finally, from a kind of academic research perspective, what advice would you give to someone who potentially sees you bringing together all of these amazing organisations and doing a project like this? What advice would you give them? Laura Ashley (42:31) Well as an academic, you know, this is ⁓ amazing for me because, you know, we're in the university doing the research but all my research is applied and I only do it because, well, in the hope that it will actually have some benefit in the real world. So to work, you know, with the people. you know, that are actually in practice together is amazing. doing this project, you know, some of our research findings inform the project, but then within this test, we had carers of people with dementia and the carers had the cancer. It wasn't the patient who had the cancer, but I'd never done any research for that group and nor had anyone else. So then we did a new research study on that group to feed back into helping the carers of people with dementia where the carer can. So it's, you know, it's collaborative and each is informed, the practice informs the research and so on. And that for me is kind of the ideal if it can happen. Yeah. Jill Quinn (43:37) Thank . Jo McNamara (43:43) Amazing. Well, thank you all so, so much for coming and joining us on Rad Chat. It's been a really interesting discussion. So a huge thank you again to our guests, Noreen, Laura and Jill, for talking about dementia and improving cancer outcomes. Thank you all for listening to Rad Chat with myself, Jo McNamara and Naman Julka-Anderson. Thank you all very much. Bye bye. Laura Ashley (44:02) Thank you. Thanks. Jill Quinn (44:02) Bye. Jo McNamara Rad Chat Host (44:04) So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate. Naman Julka-Anderson (44:23) Stay up to date with the latest radiotherapy and oncology advancements by liking and following us on social media and hitting subscribe wherever you get your podcasts. Jo McNamara Rad Chat Host (44:33) Please do join our supportive community designed by professionals who understand the unique challenges of working within radiotherapy and oncology. Follow us across all of our social media channels and make sure to check out our website www.radchat.co.uk. Together we're actively working to improve our profession and make a lasting positive impact on cancer care. Naman Julka-Anderson (44:56) It goes without saying that we can't achieve this alone. It takes all of us working together to create real change. That's why we value every voice and every contribution. We ask that you listen and learn and spread the word, share your story with us and connect with us. Jo McNamara Rad Chat Host (45:11) And if you have liked this content, why not buy us a coffee? Go to our website and drop us some love. Thank you all for listening and take care.