An Interview with Robin Pritchard: Accessing Prostate Cancer Support in your locality. “CancerCareMap.org”

Clare Delmar

Hello and welcome to OnFocus, brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided, or even ignored. Prostate cancer is the most commonly diagnosed cancer amongst men in the UK and with this number fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Robin Prichard, co-director of Cancer Care Map, an online resource that helps people living with cancer to find care and support services in their local area anywhere in the UK. These services are wide ranging and include counselling and support, exercise and fitness and financial advice, amongst many others. It’s aim is to make sure that no one goes unsupported because they are not aware of a service in their local area. Robin joins me today to discuss how Cancer Care Map works and how it’s impacting the communities it serves. Robin, thank you so much for joining me today.

Robin Pritchard

Thank you for having me.

Clare Delmar

It’s a real pleasure. I’ve been very excited when I first learned about this, which was only very recently. And I think Cancer Care Map joins a whole range of digital mapping services that I seem to be aware of and no doubt you are as well.

Robin Pritchard

Yeah, I think it’s becoming I mean, we launched our pilot site back in 2018 and went fully live with cancercaremap.org in 2019, and we’re starting to see more and more sort of people, and I think especially over the last 18 months, more and more people have turned online for help and support and to connect with other people.

Clare Delmar

So maybe that’s a good way to just give us a little bit more detail about how the project got started. You mentioned it was in 2018 and then maybe just give us some examples of the kinds of support services that you’re actually mapping.

Robin Pritchard

We are a charity, and the charity behind Cancer Care Map is the Richard Dimbleby Cancer Fund, which was set up in the 1960s following the death of broadcaster Richard Dimbleby. So we’ve worked in the field of care and support since that time, predominantly through our work at Guys and St Thomas’s Hospital. And around 2015, 2016, the idea of the Cancer Map first was sort of talked about and it came very much from people approaching us personally saying, we know you’ve got a support centre in London, how do we find out about the support near us when people are affected by cancer? And so we commissioned some research with Guys and St Thomas’ to a) sort of do some local mapping of support services in Southeast London, but also sort of to look wider to see how were people signposted to support services in their area? And it became quite apparent quite quickly that there was no single place to go. Some charities do have directories on their websites, but it’s sort of tailored towards specific types of support or specific tumour group or a specific sort of brand of support. But there was nothing that encapsulated everything. And the alternative was just to go to Google. And that’s quite intimidating thing to do when you’re first diagnosed with cancer. And I think quite often people are told, Don’t Google it wait until you see your clinician. But actually, when you can’t sleep and it’s 03:00 in the morning, the first thing you do is pick up your phone and start Googling. I remember in one of our focus groups, a patient said to us, going to Google is like being given the key to the British Library and being told to go and find a specific book when you don’t even know what that book is called or where to find it.

Clare Delmar

And maybe the lights are even out as well.

Robin Pritchard

Yeah, exactly. And so that’s kind of where Cancer Care Map came from, and we’re completely independent. We work with all the UK charities, all the community groups, all the NHS trusts around the country. And it’s about putting all the information that’s out there, all those amazing support services that are out there in the community and in the NHS trusts in one place where you can find them.

Clare Delmar

So just give us some examples of what you mean by support services. I mean, I mentioned a few in my intro, but I’d like to hear from you what some of these services actually entail.

Robin Pritchard

It falls into sort of three main groups. Really. There’s the sort of psychological support, emotional support counselling, I think probably that’s the thing that people initially think of when you think of sort of support. But then there’s sort of health and wellbeing support as well. So all those kind of health and fitness, to do with people’s awareness of their physical things that happen to them following surgery and treatment, all those sort of health and wellbeing support that’s out there. And then there’s practical support. It’s things like you mentioned financial support, finding out about how to navigate the benefit system, things like travel and transport, how to get to and from, there’s a huge financial impact if you’re suddenly having to travel to and from hospital to appointments all the time. And there are so many amazing support services out there, charities and community groups, that offer help sort of taking people to and from their appointments. And another much more practical thing, there’s a charity that we always talk about called The Cinnamon Trust. They are UK wide, and they have pet foster carers, essentially. So if you’re living alone and you have to go into hospital for a certain amount of time, they will foster your cat or your dog for you. So it takes all that sort of anxiety. And this is a real concern for people when suddenly they’re impacted by cancer. It affects all sorts of aspects of your life that you may not even have thought of before. And actually, you might not even consider that there could be a charity out there that would help you with these things.

Clare Delmar

Indeed. Obviously, it’s patients themselves who seem to be your primary beneficiary group. But is that the only beneficiary group?

Robin Pritchard

Non

Clare Delmar

Are clinicians or GPs or healthcare professionals….?

Robin Pritchard

Yeah. And sort of going right back to the beginning when we sort of held our first focus groups to try and find out if we were going to develop something, what did people want? We brought together a group of patients, carers and clinicians, with a couple of GPs involved as well. It’s not just for the person going through cancer. And I think quite often as well the person themselves, especially at the early stages of diagnosis and treatment, you’re so focused on what’s happening to you and your appointments and what they’re sort of practical. This is what I’ve got to do for the next, however many months and quite often it’s the people around them. It’s either the carers or their family and friends who are wanting to do something to help, who are feeling helpless, want to sort of offer some advice. So I think again, cancer care map can be a really good sort of resource for them. When you want to find out what actually, what can I do? What’s out there? How can I help my friend, my partner, by finding out about all that sort of extra additional support that’s there.

Clare Delmar

I was going to ask you about that, too, because one of the things that we noticed with our patient group is that often it’s not the cancer patient himself that is actually seeking care, seeking treatment, seeking advice. But it’s actually a patient advocate in the form of a family member or a loved one. So it’s interesting to hear that you obviously recognise that and that you’ve designed this map to support them.

Robin Pritchard

Yeah. Absolutely. And I think it’s on two levels. As a friend or a family member, you want to be helpful, you want to be able to sort of come up with things that they haven’t thought of that can sort of be a real use, but also sometimes, especially if you are the primary carer you need support yourself. It’s that old adage you can’t pull from an empty cup. You need to… again through the work that we’ve done at Guys, very much it’s that supporting the people who are supporting the people who are going through cancer. Because it’s really important, because it has a huge mental, physical and financial impact on people.

Clare Delmar

Absolutely. Yeah. I can see that. Something else I want to pick up on. You mentioned a little bit earlier when you said that often people they don’t know that they need certain kinds of services or support, and sometimes at least in our patient group, in prostate cancer. I think the reason they don’t know this is because a) they don’t talk about it and b) the reason they don’t talk about it is it’s kind of perceived as “taboo”. And I put that in inverted commas. And I’m curious about how that concept comes into what you’re doing. And I’m aware that many of the services that you’re mapping and by doing that, making accessible to people are addressing elements of cancer and cancer treatment that are seen as taboo. And this might include sexual dysfunction. It might include mental health, urinary and bowel function, for example. And these, of course, affect many men with prostate cancer. So I’m wondering how you think the map might help to break these taboos and possibly enable more cancer patients and their loved ones to access the services which will improve their quality of life.

Robin Pritchard

Yeah. I think it’s very much about informing people, giving people the information. And again, I think there are so many ways in which cancer can impact you and impact your life and impact your family and those around you. And I think again, people have given so much information at the start that they’re overwhelmed by all the information they’re given. And actually, all they’ve heard is I’ve got cancer and I’ve got to have this treatment and this operation and it’s possibly going to have this effect on me. They don’t understand all those other things that are going to happen. And as you say, it can have a very physical sort of impact on someone depending on the type of cancer it is and whether that’s urinary sort of cancers or I guess, as you say, affecting people’s sexual functions. And again, that’s possibly the kind of things that you wouldn’t want to discuss with those closest to you. Actually, I think knowing that there are these amazing organisations out there that provide and again, it’s something that we hear more and more, that provide a safe space where you can have the conversations about the things that are really worrying you that you don’t want to have with your close friends and close family.

Clare Delmar

And objective approaches as well, I imagine.

Robin Pritchard

Yeah. Again, we’ve just been doing some interviews around the country with different people sort of around cancer care. And again, we keep hearing people referring to the cancer centres and support groups that they go to as a safe space for them to talk about things with other people who really know, understand what they’re going through because they’ve gone through similar or going through similar themselves. We interviewed someone last week. I’ve just been looking editing his films yesterday, an Afro Caribbean guy in London who was diagnosed with prostate cancer when he was 50, and he talks very candidly with us around how men just won’t talk about these things. There’s a huge issue with the sort of black community not coming forward and presenting very late with things like prostate cancer because it is a taboo that you don’t talk about, you kind of ignore these things. You just don’t want to admit that, as he said in his interview, you’ve got an issue down there. And actually these support centres allow safe spaces for people to come along and actually talk about these things and actually get the help and the treatment that they need.

Clare Delmar

That’s a really interesting example, because I’ve actually done a few interviews with two Afro Caribbean men about this. So yeah, maybe we’ll have to touch base on that in another conversation, but it is very important one. And in fact, I saw something today about GPs engaging with black men in the early stages and sending them for more diagnostic treatment on prostate cancer. And it’s a very pronounced differential because of how they get access to these services, which actually leads me on to another question that I think is something at the top of a lot of people’s list the last few months, if not the last few weeks, and that’s this concept of health inequalities. This has become more and more apparent and talked about certainly since our experience with Covid. And again defined as the variability in both health outcomes and the availability of services to people based on whether it’s age, race, geography and I guess other factors as well. So I’m wondering how cancer care map might demonstrate these inequalities or how you might address them or how you might simply raise awareness of them.

Robin Pritchard

Yeah. I think it’s something that we’re very aware of, and it’s reaching the hard to reach. We work very closely with the NHS England Cancer Alliances, and it’s something that we hear again and again around people are focused on health inequalities and how you reach the hard to reach. And it’s those communities that for so many different factors, whether it’s cultural or financial or just so many reasons why certain communities don’t access healthcare. We’ve seen it with the sort of the vaccine take up in the last 18 months and things as well. And I think that’s true right across the board. What we try and do with cancer care map is we’re really pushing out there to everyone to keep it really simple as well, just so that people can just go on there and see what’s around them. And again, part of our focus is reaching out to not just the patients themselves but those around them, because actually, sometimes the people around them have got more access information is more accessible to them. And so if we can get them on board, then they can then impart that information back to the person that they’re supporting.

Clare Delmar

I mean, do you have any recent examples of various cancer patients that have really benefited from your services? And I’m asking this also the knowledge that there is indeed this cancer backlog. And a lot of people have approached cancer care with a lot more sort of fear and doubt and trepidation. So I’m wondering what you’ve observed in the last few months.

Robin Pritchard

Back in September, we launched a digital campaign across Google and Facebook, and actually, the engagement that we’re getting with people is painting quite a bleak picture, really. And it’s people who are seeing our short films and commenting on them. And a lot of what we’re hearing is, well, I never had any of this. I didn’t have any support or I’ve been looking after my husband for two years. We don’t have any support. There’s nothing there for me. We know that we’ve got nearly 3000 organisations on Cancer Care Map that are offering amazing care and support, but people don’t know about them. A lot of people just don’t know or they have sort of one negative experience and it puts them off asking for help. They think actually, they didn’t help me. So no one can. And I think that’s something that we need to really focus on. How do you get to those people? How do you get the trust of people that they will access the services and will reach out for support when they need it?

Clare Delmar

I guess on that note, my final question to you would be what would you say to a recently diagnosed prostate cancer patient, which is our community about identifying and accessing support other than sending them to your website, which I will put on our programme notes. I’m wondering what you would actually say to an individual about what’s out there. You actually sound very positive. You said something like 3000, I think, organisations are present on your map.

Robin Pritchard

Yeah, we’ve got nearly 3000 local and national organisations are out there. We know we talk to these people every day. They’re out there working really hard, providing amazing care and support. And sometimes it’s a very simple thing that can make a huge difference to someone. Again, through the interviews that we’ve been doing recently, the two things we hear are people saying, Just ask for help, just don’t be afraid, be honest, ask for help. If you’re struggling, look for help. Don’t try and do it alone. The second thing is people saying, don’t feel pressured, take your time, don’t feel you have to tackle everything at once. And actually a lot of people sometimes it’s maybe sort of six months after their initial diagnosis, after they’ve had their treatment and they’re recovering and they’ve moved on or even if they’re in palliative care. It’s that later on, sometimes the impact of what’s happened to them really hits them and that’s hopefully by putting everything on Cancer CAre Map, you can come back to it at any point. Again it goes back to that initial when people initially diagnosed, they’re given a huge folder of information and leaflets and phone numbers and it’s too much and it all gets thrown away somewhere or shoved in a corner. And actually in six months time when you think, actually, I’m really struggling now, I could do with some help. You don’t know. You have no idea where that leaflet has gone. Actually, it’s all there on Cancer Care Map and the thing to say as well with Cancer Care Map is that we check and verify all the information that goes on to the map. So you know it’s trusted. We also check and update information every two to three months, which again, is really important because things change so quickly, especially in the last sort of 18 months. The services have adapted and continue to adapt to the impact of the lockdowns and the restrictions. So, yeah, it’s just knowing that that information is there and knowing that there’s always help you wherever whichever part of the sort of, awful word to use, “journey” that you’re on.

Clare Delmar

That’s a very positive message, which is one of the reasons why I wanted to bring you on the programme because there really are these services out there, and it’s really wonderful to see you trying to consolidate them in a way that gives people access.

Robin Pritchard

Thank you. There are all these amazing services, amazing centres that are sort of charity run and community led, and they do provide that safe space where you can go along and just have those conversations or just sit down and be angry or sit down and cry with people who really understand, who aren’t your friends and family, who are people that have been through what you’re going through. It’s really important to know that there are these safe spaces out there.

Clare Delmar

Indeed. Well, Robin, thanks for speaking with me today. It’s been a real pleasure.

Robin Pritchard

Brilliant. Thank you so much.

Clare Delmar

A transcript of this interview and links to Cancer Care Map are available in the programme notes on our website, along with further information on diagnostics and treatment for prostate cancer and additional interviews and stories about living with prostate cancer, please visit www.thefocaltherapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening and from me, Clare Delmar, see you next time.