Bowel Research UK’s Patient and Public Involvement Manager Sam Alexandra Rose is joined by Pete Wheatstone to discuss his experiences of having bowel cancer while being self-employed. They talk about how bowel cancer symptoms, diagnoses, treatments, and long-term effects impact business for those who work for themselves. They also cover the differences between being employed and self-employed with cancer, including the financial implications, support networks, and communication. Talk also turns to how researchers and clinicians can help people to make informed decisions on an individual, shared decision-making basis.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hi everybody. Today I’m joined by Pete Wheatstone to discuss all things bowel cancer and self-employment. We’ve spoken on the podcast before about dealing with a cancer diagnosis in the workplace, but what are the implications, especially the financial implications, when you’re self-employed? So Pete is someone who has experience of this and Pete, welcome to the podcast.
Pete
Thanks very much for having me, Sam.
Sam
So do you want to start off just by telling me a little bit about yourself? So you were self-employed. Can you tell us about your business and what you did for work at the time of your diagnosis?
Pete
Yeah. My business was in the field of information technology and I was known as what’s called an IT consultant really, essentially self-employed. And I was working with the large UK banks and insurance companies and it meant going from project to project. Hard work. You’re often working flat out for 50 to 60 hours a week, but generally one customer at the time. But it was very well paid. So I guess in some ways you could call it a micro business because there was only myself and my sole employee was my wife, who helped me with the bookkeeping.
Sam
- And then what happened at the time of your bowel cancer diagnosis then – that must have quite frankly thrown everything into a bit of chaos. Can you tell us about the diagnosis and the treatment that came along and what all of that was like for you?
Pete
Yeah, well all was well for the first seven years in business, but then I started to notice that I was becoming increasingly fatigued, waking up in the morning, still feeling very tired and looking back, I now realised that my poo was gradually becoming darker. But at the time I thought nothing of it. I had no pain. But I had plenty of other things to worry about, including running the business, helping support a next door neighbour, sorry, the next door neighbour her husband had died recently, and also my wife’s parents, both in their 80s, and they were increasingly unwell and needing support, and unfortunately they lived 100 miles away. So at the time, I just felt I needed a break from work and with Christmas coming in as it was in 2014, that’s broadly what I had planned for myself. But unfortunately over the Christmas and New Year whilst we were visiting friends, I did have stomach pains and generally started to feel quite unwell, so I ended up in the local A&E where the local doctor diagnosed diverticulitis and prescribed some antibiotics and sent me on my way. And that’s, I understand a fairly common starting point for a lot of people with bowel cancer. And all was fine through January, no more stomach pains. But I had started to wake up in the middle of the night, feeling wet and cold. And I really couldn’t get what was going on. And then I realised after three or four occasions like this, that I’d been sweating profusely whilst asleep and the pyjamas were becoming soaked and it was when the sweat got cold I woke up and I now know that these are called night sweats. But at the same time I was actually convinced that this was the side effects of a new pill that my GP describe for me. So I arranged to go along and see him. And he started to ask me some very specific and unusual questions. He was interested in my visit to the A&E at Christmas. He wanted to know how long I’d been extremely tired for, which was probably 6 to 9 months. But I’ve got all the excuses. I’d been extremely busy. And whether I’ve lost any weight recently without going on a diet. And yes, I’ve lost almost two 2 stones, but that was a good thing, wasn’t it? And had my bowel habit changed in the last year. Well, now you mention it, it had. Did I have any bleeding from my bottom or blood in my poo? And I was a bit relieved to be able to say no. As it turned out, in hindsight I gave an incorrect answer. But luckily for me, the GP, who was only 12 months from retirement, immediately started suggesting that this might be a one in ten chance of being bowel cancer and not diverticulitis. And I of course clung onto the 9 out of 10 bit in that bit because I was pretty sure there’s nothing seriously wrong with me. Anyway, he said he was putting me down something called a two week wait referral with the hospital. And I then had a colonoscopy. Or, as I later found out, a sigmoidoscopy. And that’s basically a like a short form of an endoscopy, which just investigates the back passage from my anus up to the first bend of the bowel, which is called the sigmoid. And apparently that’s where most polyps and bowel cancers start. That didn’t show anything abnormal. So was then sent for a CT colonography, which inspects the whole of the large bowel and rectum. And I left there and heard nothing for three weeks and assumed nothing abnormal was found. And then I got a call from the hospital saying can you attend an appointment in a couple of days’ time and it was then that I found out that a tumour had been found and it had all the characteristics of a cancerous tumour. It was very close to my spleen and possibly growing into it. I didn’t really understand the implication of that at the time and now do and, and in fact, I had to ask what the spleen was. And I was told it’s basically a small organ that filters your blood and controls white and red blood cells in the body. In other words, it’s part of your immune system that protects you from infection. I guess most cancer patients can relate that when you are diagnosed with cancer, it comes as for most a complete shock. To be honest, I was still expecting the confirmation of diverticulitis. And that I was in that nine out of ten group mentioned by my GP.
Sam
Well, that’s quite a lot of things to already have happened even before you get to that stage of diagnosis, isn’t it? I mean, the sort of feeling ill and having the symptoms and going to A&E and having the diverticulitis diagnosis and then finding out that that might not be the right thing, it sounds like perhaps being self-employed and running your own business, I mean, you can put symptoms down to, you know, feeling stressed, feeling tired, that kind of thing because of your job. Do you think that like being self-employed and running your business kind of impacts like everything that you spoken about so far on its own? Never mind having the cancer diagnosis.
Pete
I think you’re right, Sam. I think it’s very much if you’re really focused on your business and I’ve always been warned. You know there’s a saying that people either work to live or live to work. I was in that latter category, I think. So my, I wouldn’t say my sole attention, but a lot of my attention was on the business, making sure that was running properly and also the peripheral stuff about my wife’s parents who were elderly and feeling ill, which was a concern and there were other things going on in the family as well, which we won’t go into. But yes, it was a heck of a shock. And I really wasn’t expecting it. And then when they asked you, do you have any questions, well your brain freezes. As I’m sure lots of people have told you, and I could only think of the most basic ones, which was, am I going to die? They said we’ll offer you a treatment for this. Will my treatment be successful, which I guess is another way of saying, am I gonna die? They certainly hope so that the treatment will be successful, but they need to do a lot more tests. So I noticed the lack of a clear yes and no to my questions, which perhaps didn’t help and added to my upset. But I did tell them I wanted to know the bare truth. So I’ve only got myself to blame. So yes, so it’s about two months later that I had an operation which was called an extended right hemicolectomy and splenectomy. And that means that about 1/3 of my large bowl was removed and the spleen was removed as well. And that was involving open surgery because they couldn’t do a keyhole one because of the location of the tumour. I was in hospital for about 11 days because there were some post operative complications following which I was discharged from hospital. And I had one little trip back there when there was a complication with the incision not healing properly.
Sam
And you had your spleen removed as well. How has that affected your immune system? Has that been difficult through COVID and that kind of thing and having to take extra precautions?
Pete
Well, not as bad as I’d expected. I was told to be fair, that some of the other organs in one’s body can take over some of the functions of the spleen, and I have to take 4 penicillin tablets every day. And for the rest of my life. And I was constantly on or off the list of people who had to take extra precautions. So I consoled myself there was actually, it must have been relatively low risk rather than high risk during COVID. But yes. And of course when I said to the surgeon if there’s any doubt just whip the spleen out. Now, I didn’t anticipate the pandemic coming along.
Sam
Yeah, I can relate to that being on and off the list because we were about seven weeks into the pandemic before I got a letter to say you’re clinically extremely vulnerable. And I’ve been just like going to Tesco’s like. You know, and then I got offered a couple of and I got offered my first three COVID jabs and I haven’t had any letters since then, so I don’t know if they’ve just decided that I’m not vulnerable. I don’t know, it’s weird.
Pete
I’m in a very similar position to you. Yeah, I think they’ve lost interest. Yeah. So a couple of months after I recovered from surgery, I then had an appointment with an oncologist. And that was at those days, it wouldn’t be now, but it was, I was prescribed 6 months of chemo. But of course that meant having chemo side effects, which then meant I was readmitted to hospital on a couple occasions, once because of a blood clot on my lung. I thought I’d managed to pull a muscle in my chest somehow, but it was painful whilst breathing and they said no, it’s a pulmonary embolism. So you know, when we look at it from the point of diagnosis to the point where I started to feel well again after chemotherapy, we’re really talking about 18 months duration. And of course that has an effect on your business.
Sam
So you’re not working for that that whole 18 months?
Pete
No, no, I couldn’t. I was particularly unwell during chemo, which surprised me. I was told some people can actually go to work, carry on. I could barely get off the settee, but there we go and we all know that we’re all different. We all react differently to the same drug. So I thought in that particular case, my body didn’t do me very well, but there we go. In long term effects, I guess there’s two things. I had a number of hernias, couple of which have been repaired and a heart defect resulting from the pulmonary embolism. I’ll not bore you with the details of that, but that is a long term effect that I get along with.
Sam
What did it mean after those 18 months? Were you able to return to work or did you not return to work since then?
Pete
No, I think at the point of being told that I needed a major operation I had to make a decision about the business. It was our sole source of income and I was trying to work out whether I continue to run it or should I shut it down. And it was pretty obvious from what the doctors did tell me, and I wasn’t aware or couldn’t take on board all of the information that was given at that time that this was going to be three, four, five months off work at minimum. And the sort of work I do, you’re brought in because there’s a problem on a software implementation or a data migration project where they can’t staff it from their own employees. So you’re brought in from outside. And it’s one of those things, as soon as they’re up to date, they say goodbye to you. But in the meantime, you’re well paid. So it strikes me it wasn’t fair to myself, and it probably wasn’t fair to the customer to go off for three to five months without a definite end date. So I thought right, it’s time to pack up that and wind up the business.
Sam
And how have you been doing? Since then, are you OK now, what’s the status at the moment?
Pete
Well, apart from those long term effects, if we’re talking about the cancer here. Then I’ve still got hernias, take tablets for a hiatus hernia, and of course the penicillin tablets hour times a day. So yeah, I think that’s pretty much it from the cancer viewpoint. And obviously now I keep a fairly close eye on these symptoms. Which I was not aware of before. So I’ve learned something from it. In terms of my business, I mean that meant there was a lot to do before the operation. So that involved really, first of all, telling the customer I was working for, which was a High Street bank at the time, talking to the project director. And I said OK, I’ll work another couple of weeks and hand over what I’m working on. And also explain to the people in the various departments that I worked with what was happening and why, I felt that was only fair to them. Luckily, on this project there were not that many people, probably only 10, but if you imagine a self-employed person with regular customers. Let’s say a mobile hairdresser. They might have 30-40 customers that have to contact to say I’m sorry, I’m closing down the business. Amongst many other things that you have to do. I guess as part of the decision, it’s also the financial impacts as well. Because closing a business would mean there would be no further income. My wife no longer had her job. She was now spending all of her time at her parents’ house looking after them because they were increasingly ill. And so we realise that, OK, we’ve got no income either of us. So we’re gonna have to use our savings and working capital from the business to try and get us through. It was pretty obvious early on that really that wasn’t going to be sufficient. You know, we had typical outgoings like everybody else has, whether they’re healthy or ill, that’s the council tax, the gas and electricity costs. And one does need to keep warm during cancer treatment. Food and motoring costs and all the usual stuff that everybody else faces. And whilst it’s possible to cut down a little bit on outgoings, it was simply not practical, I think to move house during treatment to cut the cost down further. And moving house was a bit of a non-starter because that would take a lot of time and I don’t think either of us were up to the stress of packing and unpacking and all the things that go with a house move and then of course before the operation there was a myriad of tests and consultations to attend. There seemed to be many of these, as I’m sure your listeners could relate to. Most days there was a letter or two from the hospital and if I didn’t receive a letter from the hospital after a few days, I started to worry that that overlooked me. So all those weird things, I’m sure you can relate to. You don’t want the letters, but you do want the letters for the security.
Sam
Absolutely. Yeah, it’s a horrible thing to have to chase something that you don’t want.
Pete
Yeah, absolutely. But I say, that was the medical side and then the need to close down the business having made the decision. So what did I need to do? I’ve got to first of all make sure I receive all the income from work. I’ve got to pay all my suppliers. I’ve got to sort out the company bank accounts. I’ve got to prepare draft accounts for my accountant. I’ve got to make a final VAT return and I’ve got also got to make an income tax return and then formally close the business. So there’s a lot of work to do there. But unfortunately, in addition to that, because we were looking to move our ill in-laws much nearer to us, I was also selling their property, buying one for them. As well as sorting out the probate for my mother-in-law, who unfortunately in the middle, died. So there’s a lot of things going on in addition to the usual domestic administrative chores.
Sam
You’re not kidding.
Pete
And then of course, you’ve got to think about getting your affairs in order. Just in case the worst was to happen. So in some ways it was sort of confirmation it was the right thing to do to close the business down. And on a plus side, it certainly took my mind off thinking about cancer for a few hours every day.
Sam
I guess that’s the thing. If you have two things to stress about, at least you can distract yourself from one of them by focusing on the other in a weird way.
Pete
Yeah, I think so. I’m glad I had that workload, to be honest. Probably wouldn’t have suited everybody for. For me, it did do. But again, when I looked around there was very little specific guidance for the self-employed from the medical charities or the NHS or the local support organisation. But again, I felt lucky because the knowledge I gained from my career had been in financial services. For 20 years, that helped guide me through to some degree, but I still made some financial mistakes. But then I really wonder how other self-employed people such as builders, plumbers and of the hundreds of other self-employed trades will cope without the financial knowledge that I had. So I was very lucky.
Sam
So what was the financial impact for you then, for having to shut down the business and generally for being self-employed with cancer? I mean you don’t have the benefits that employees have, so you don’t have sick pay. You’re losing out on work opportunities and all that sort of stuff.
Pete
Yeah, I’m not losing out on opportunities I guess you could say because I wasn’t in a fit state to take advantage of any of those opportunities, but it was about what can I do for income? And now there’s a benefit that’s payable to the self-employed and others called employment support allowance or ESA for short. And it’s now something that’s rolled up into Universal Credit, I understand and qualifying for it was fairly easy. You just had to work for the last two years, I think, and an assessment, which in my case wasn’t necessary as one of the exemptions from the assessment is whether you’re waiting for having or recovering from chemotherapy. Or radiotherapy. But it still took about 13 weeks to come through. We were just living off of savings.
Sam
That’s a long time.
Pete
Well, it well, luckily we’ve got savings, but you know not everybody’s fortunate to have that. But when you get the payments, they’re not great. You do a 13 week period at £84.80 a week, then that’s the current rate. And after 13 weeks it increases to £128.85. So that would barely buy you food these days for two people for a month. But anyway, there you go. That’s the situation. And I guess we were glad of it. And there’s another thing called Personal Independence Payment. Which is another potential benefit, but I understand that’s related to being a benefit because you’ve got reduced physical abilities such as activities of daily living or mobility problems, and probably helps pay for carers and stuff. I didn’t need that to be fair because I’d got my wife to look after me, so it wasn’t quite so bad. So yes, so that’s what I did and then my mistake was thinking well, I’m 56 now. I could take my pension early, which I decided to do and that really helped plug the hole in the finances. But of course, not everybody’s in that situation. So that was fairly useful for me, I guess so yeah. So really, now I live off the pensions that I’ve got and we get along like that. I decided not to return to work. I didn’t want to work 40 to 60 hours a week again, possibly working away from home. I thought, no, it’s time to retire. Maybe somebody’s telling you something, Peter.
Sam
Yeah, it’s interesting thinking about how, you know, people are going to be affected differently. As you say, some people may be able to take early retirement and some people won’t be able to. And then there’s other people as well, kind of beyond the self-employed, who may also be affected. You know, like for example, people who are on zero hour contracts or if you haven’t been at a job very long, you know, maybe if you just started a job and you’re unlucky enough to suddenly have a cancer diagnosis and then you’re not eligible for sick pay. Yeah, it could it impacts a lot of people, couldn’t it?
Pete
Well, also if you’re working for a very small company, I mean they can’t afford to pay employee benefits beyond statutory sick pay. So it does impact that and. You know, just for the self-employed looking at statistics from the Office of National Statistics just this year. The number of self-employed people in the UK is 4 and a quarter million. So that’s one in seven of the working population. So you know it, it is a significant problem and that’s not accounting for the people you’ve just mentioned either on zero hour contracts or working for very small companies. And I think if you include them, that almost comes up to one in three of the working population. So it’s not an insignificant population.
Sam
And as you said before, these people may have lots and lots of customers. You mentioned like mobile hairdressers may have 30 or 40 like customers that they need to say, oh I’m not going to be working for a while. Or I’m sort of shutting down completely. What was it like for you having the conversation? I mean, you said you only had one customer at a time, but what was it like having to have the conversations with customers and perhaps other people?
Pete
Well, to be honest it wasn’t easy. But it was harder with the people as a self-employed contractor and IT contractor you get to know certain people that tend to turn up again on the same old contracts that you’re on. So you get to know them. And I found it harder talking with those guys than somebody who didn’t know quite as well that the company I was working for. Well, so yeah and of course then you feel you you’re leaving the team, you’re no longer a member of the club. Yeah. And that’s what they say about cancer. You’re now a member of the club you never wanted to join.
Sam
Yep, that’s it.
Pete
But it is that sense of loss about you’ve left the project. You’ve left the team. Obviously you’re going to miss the income. But it’s also about you’ve no longer got your business. And business is a, for me, was a part of my identity because I poured so much effort and time into it.
Sam
Yeah, it’s different, isn’t it, when you’re self-employed and you’ve got your own business, perhaps might be different to somebody who’s just an employee.
Pete
Yeah. Yeah, you. You tend to get a little bit more support, but I guess there’ll be similar feelings in some way, particularly the social side of work.
Sam
Yeah, yeah. And that’s the difference as well when you’re an employee you might have that support from HR, from managers and yeah, it’s that sort of social circle and yeah, support at work as well isn’t it?
Pete
Yeah, certainly for large companies you’d get support from HR and stuff. Yeah, absolutely.
Sam
And there’s, I guess there’s disruption to work as well because you mentioned sort of attending appointments. So even again before you have that cancer diagnosis, it’s having to go to outpatient appointments, if you have to have colonoscopies or MRI’s or CT’s or whatever it is and. And dealing with all of that. And it’s not just making time for it, but it’s, if you’re self-employed, then that’s time that you’re spending at appointments and time that you’re not spending, you know, making money for yourself.
Pete
And of course, you’re not feeling well during any of this, so your energy is not as great and customers want you at your best not doing a sloppy job. So it is difficult for everybody concerned I suppose. And then of course you’ve got the personal feelings that, you know, I guess most cancer patients have this of why me? Why now? I mean, there’s never a good time to be diagnosed with cancer, but you know, that loss of routine of work just getting up in the morning to set time and off to work, you go. So you’ve now got an unstructured week. And then there’s the feelings of letting down the family by giving them or burdening them with additional worries and not bringing home the bacon, any income. I guess as a bloke you might feel that more, I don’t know these days you’d probably say that’s equally felt by ladies and gents. And then of course you’ve got the, what might the immediate future holding still for you? And I was lucky I didn’t have a mortgage. You think about factoring mortgage costing to that extent? You know, you’ve also got your home potentially at risk as well.
Sam
Yeah, especially now with inflation and everything, everything’s more expensive. Everything’s more difficult.
Pete
Yeah, yeah. And of course, you know here, I guess we’re talking not only that segment of the working population. But it’s not just cancer, it’s all sorts of bowel diseases. And you’ll know better than me that you know, if you can’t work, then it has real implications, particularly if it’s a significant illness which is going to affect your livelihood.
Sam
Yeah, yeah. And especially with bowel related diseases and practical things about having to be close to the toilet or the symptoms like the stomach pains and yeah, all sorts of things. Yeah. It can be very disruptive.
Pete
Yeah, and it’s bound to affect your career prospects as well, isn’t it? If you can’t be a regular attender at work and you can’t make that meeting or it’s too far away for you to travel, etcetera. But I guess. You know, I’m not here to moan about the level of benefits or my luck as one might call it. I’ve been lucky in a way. I was lucky that the GP spotted my cancer. I was lucky that a surgeon spotted a further tumour when he was undertaking the surgery, which actually was starting to spread to the rest of my body. So. So that was lucky. And I’ve been lucky in terms of being able to take advantage of the pensions at my age so. You know, I don’t consider myself to be unlucky in that respect. I just wish there was some more guidance for the self-employed. To help you think through these steps, which does take a lot of thinking about at a time when you’re still reeling from a cancer diagnosis and probably not physically feeling well as well. So you know, that’s probably what I’m here today for. That’s my driver in appearing today. So what can we do constructively to help people? And as I say, the guidance has improved in the time when I was diagnosed back in 2014, but it’s still too far generic in my opinion to be really useful. So looking around recently, a first suggestion is often made about you need to make a decision about your business. Are you going to continue it? Are you going to wind it up? But how do you make a decision about your business if you don’t understand or can’t get information about or understand the impact that cancer or any other illness, serious illness, is going to have or the treatment or its side effects for that, not only the individual. But for the business and I think that’s where some guidance would be helpful. So. So what guidance could that be? I’ve been thinking about that and you’d think there’d be some statistics that could help us here to say, right. Let’s say it was me. Pete, you’ve got Stage 3 cancer. Typically, your treatment journey is going to look like this in timelines, and it may be because of the particular drugs you’re gonna have on that you may need to think about being a roofer. Maybe that would no longer be appropriate for you, so having some guidance which helps people understand the impact on their business. I mean it’s for them to ultimately decide of course what they do, but some guidance about how long the treatment’s going to be, what the path is going to be like, would really be helpful and it’s not just about how long will you be in hospital for. It’s really about how long will it be before you can return to your usual work? That’s the information people really want, and yes, we’re all different. It’s going to vary by age. It’s going to vary by disease, etcetera. It’s also going to vary by the job you do, but it shouldn’t be beyond the wit of man these days to get some statistics that could give some broad indications to help people.
Sam
Yeah, and this could also be factored into shared decision making as well. If there are multiple treatment options, then factoring in the person’s business, what do they do? How long will this treatment leave you out of work? How long will this treatment leave you out of work? And yeah, factoring in those individual things to consider.
Pete
Yeah. No, you’re absolutely right, Sam. I’ve got a, my plumber have had for 15 years and my electrician I’ve also had for a similar time. Both have become ill in the last 10 years and they tell me the first question they want to ask is how will this affect me and that when will I be able to return to work? That’s a big factor in their decision making about treatment, you’re so right. So I’d like to think some researchers could find it, and this won’t be in one database. You’d probably have to go to the department of health and social care and a hospital to get these statistics. But some guidance will be helpful compared with just asking, you need to make some decisions about your business. How do I make decisions in the absence of that information? So that’s one thing that I think we can do. Also researchers who are in clinical trials. They collect information through quality of life questionnaires. But the questionnaires really go beyond the questions relating to treatment side effects or used for NHS health economics. So why don’t we extend that to include information that self-employed patients feel is important and the priority for them? So that could include when did you return to work? Looking back, so that would be helpful. And if you think about hospitals. If they were able to provide a generic and general list of tests. You could gain from that roughly how long you need to take off work to attend the test, which again would be a useful input, but I’m not sure that’s available. And I know it’s going to be complicated and some things, the results of some tests will mean you have to have further tests, but you know. I guess we start talking about starting here, not coming up with the final end product, but I think that would be helpful. For health economists, their focus seems to be mainly on the impact of new and existing treatment cost to the NHS. But if you’re not looking at the impact of the self-employed, both working in small businesses are on zero out contract, let alone the loss to the Treasury in terms of income tax and taxes on spending, all the societal impact, then, are we truly understanding the economic cost of cancer or any other serious illness? I don’t think we are, so you know. I know life is messy and therefore the data is messy, but we have to make a start somewhere. And then finally I guess Sam, I’ve gotta say, medical charities such as Bowel Research UK. I feel you’ve got a role to play in helping set expectations with government and hospitals and researchers because as I say it’s not a problem just restricted to cancer patients. It’s any bowel disease or indeed any illness where it has significant impact. And I think you can bring your influence to bear on researcher funding, on policy and through your network of patients that help you.
Sam
Yeah, really, really well said. Thank you. Yeah. So yeah. More, more research needed and a clearer picture of the impact on everybody. More statistics. And perhaps also more opportunities for people to talk to other patients perhaps and see, you know, what have what has your experience been like in this treatment? What can I expect? And yeah, sort of generating all of these conversations.
Pete
Yeah. I mean, as I said, I made mistakes. So you know, it’s always what did you overlook when you went through this? Right, I would have never thought of that. Thanks for that. I’ll make a point of making. Sure, I cover that off in my preparations. Yeah, yeah.
Sam
Yeah, yeah, more resources. Yeah. For this specific issue of being self-employed and being ill, whether that’s cancer or anything else. And yeah, how do you deal with that.
Pete
Yeah, I don’t think we’re looking for perfect solutions here, I think we can make more progress than we’re making in support and guidance.
Sam
Yeah, it’s all being a good food for thought. I just wanted to sort of finish off by. Mentioning your involvement in patient and public involvement, because we run into each other fairly regularly, I feel in, in, in our circles. And so if anybody who is listening, who hasn’t heard of patient and public involvement or PPI before, I’m the patient and public involvement manager for Bowel Research UK and it’s my job to get people involved in research. That may be setting priorities and telling researchers what’s important to patients, what should they be researching? It may be sitting in focus groups, providing opinions on a solution or a product, or doing surveys or being a co-applicant on a research project. There’s all sorts of ways that people can get involved – as researchers rather than being researched on is kind of the headline for it. And Pete, you’ve done quite a lot in this arena, haven’t you? So I was just interested to hear how you got into PPI and what it’s been like for you.
Pete
Yeah, absolutely. And I’m part of your PaRT, which is patient and researchers together team, which is really great to be part of. To be completely honest, as soon as I started feeling well, I got bored but no longer had my business. So what am I going to do? I need to occupy my brain and one day I spotted, I can’t remember where, an event. There was one in Leeds which is the nearest city to me being run by Cancer Research and Macmillan Cancer Support. So my plan was I’ll go along, they’re going to pay my travel costs, so I’ll attend the morning meeting and then I’ll do a bit of shopping and off home I go. And it’s fair to say that I understood very little of what was being discussed at that first meeting as it involved all sorts of healthcare professionals and academics and a sprinkling of patients. But you get talking to patients and that’s always useful. But I think with starting out in PPI, it can be very daunting initially and it’s about working your way in and it’s easy to start with almost talking about what happened to you. But keeping to the topic that’s being discussed because you’re a master of your own experience aren’t you? And so I attended another meeting about a month later, where I did understand more what was being said as it was more about IT. And I was able to make some contributions. And again I made some useful contacts to that meeting, which led me being invited to join another patient and public involvement group. And it’s really expanded since then. I chair 4 patient groups and I worked with researchers on, I don’t know, I haven’t counted the numbers, probably 30 to 35 different research projects, mainly in the UK, little bits in Europe and of course your own PaRT group at Bowel Research UK. And I guess the beauty is it keeps me interested and I tend to work on clinical trials, cancer ones. I tend to work on healthcare data because of my IT background and I somehow seem to have got into surgery. Not literally, but just in surgery research. And I started off I guess by simply contributing certain aspects of my cancer experience. Depending on that aspect being researched and putting forward I guess the patient perspective. It all sounds very great as an academic and but we we’re the guys that the treatment’s being done to and that gives you a different perspective from the one either wielding the knife or handing out the tablets. So I think that is useful but you then sort of develop and the core of what I still do is about helping researchers take into account patient priorities and making sure that we protect their interests and particularly making sure that we improve communication with patients about research. Because it’s the only way that treatment’s really gonna get improved. Smarter, kinder treatments for future patients. And I find it really satisfying. And. I don’t know. I find it very difficult to say no these days when people come along, would you be interested in doing this or that or the other? Really hard to say no, but the beauty of PPI is that everyone can do as much or as little as they want to suit their personal circumstances. Knowing all the time that you’re probably helping future patients.
Sam
Well said. Yeah. Brilliant. Thank you for that. If that doesn’t motivate people to get involved, I don’t know what will.
Pete
I think the key thing is and I remember this very early days that I got asked to get involved in a major international piece of research. And I suddenly thought, what have you got yourself into here, Peter? And it’s just having somebody to hold your hand and show you the ropes. And then it really is relatively easy. But you know don’t be put off, I would say, would be my message by feeling, Well, this all sounds bit beyond me. There are people there that can help you through it. And I say you can do as much or as little of it as you want.
Sam
Yeah. And we often call patients experts by experience or by lived experience because, you know, people are experts in what they’ve gone through and in their health. So and as you say, yeah, we’re the people who are benefiting from the research. So people should absolutely have their say. In what is gonna happen to them basically, in the hospitals and yeah.
Pete
Absolutely. And it’s, you know, it’s not. You know, one doesn’t want to criticise, but sometimes there are things that happen when the treatment you think surely there’s a better way of doing it than this or… I mean I recently was back in hospital on some unrelated problem. But you know the same old same old problems were there again basically coming down to lack of a communication. And I know at the moment the NHS is stressed and stretched, but you know, sometimes it’s the simple things that help put things right. And these are the sort of things you can contribute within the research. It’s not all about high fluting chemicals or snazzy new devices. Sometimes it’s that real world practical stuff that we especially can contribute.
Sam
Yeah, communication is definitely a huge thing. I think top of my list communication and bowel prep that doesn’t taste terrible.
Pete
Ohh yes, and I like tart citron but I cannot stand that bowel prep.
Sam
So just to finish off then and you’ve given us some great thoughts so far. Can you leave us with just one takeaway that you would like people listening to go away with regarding self-employment and cancer?
Pete
I think it’s about really starting to understand patient priorities. And helping people to guide themselves through the process of “I need to either temporarily or partially suspend my business.” That for me is the key thing and I get that it’s difficult for them because if you’re an academic or you work in a hospital, generally you’ve only ever known working in the public sector. So how can you be expected to understand what up to one in three of the working population go through, so I think again, that’s another role for PPI to help people and try to, I don’t like the term educate, but make them aware that life, not necessarily quite as simple for these people as you might imagine. I mean for their lives, there are going to be other difficulties. But for the self-employed and those that we’ve talked about on zero hours contract, etcetera, there are real bits of information they need to make some sensible decisions about their treatment. And you said that very nicely earlier, Sam.
Sam
Thank you. It’s been really great talking to you about this and yeah, I hope that we’ve drawn a lot of people’s attention to a really important topic. Thanks for joining me today.
Pete
Thanks, Sam. Bye bye now.
Sam
Thank you for listening to Can I Butt In? This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.