Bowel Research UK’s Patient and Public Involvement Manager Sam Alexandra Rose is joined by Nigel Horwood, a guest blogger at Bowel Research UK and a Crohn’s disease patient. They discuss the importance of organising your medical records appropriately and establishing strong relationships with your medical experts. Additionally, Nigel gives some tips, suggestions and shares some of his experience to help improve quality of life and to self-advocate when it comes to our health.
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 sitting down with Nigel Horwood. Nigel is one of our guest bloggers at Bowel Research UK. He writes about living with Crohn’s disease and I wanted to talk to him because I love hearing about all of the ways he keeps his medical world organised and advocates for himself within the healthcare system. So hi, Nigel. Welcome to the podcast.
Nigel Horwood
Hello, Sam. Good to be here.
Sam
Great to have you on. So I always like to start by giving listeners a little bit of context. So could you just tell us a bit about yourself and share anything that you’re comfortable with about how you’ve come to be sitting here with me today.
Nigel Horwood
Yeah, sure. I’m a long term Crohn’s patient. It was October 1977 when I started to feel unwell and it actually took, as I’m sure, many of the listeners will fin… Will know, it took months to find out that I actually had Crohn’s disease. So I’ve just passed my 45 years diagnosis. A lot of the time the Crohn’s was fine, under control until 2009, but we we might come on to that later on. In 2017, I took early retirement because it seemed like a good idea, especially if you’ve got a chronic illness, to retire as early as you can. And I was looking around to do something that would help other patients and I saw Bowel research UK or Bowel Cancer Research as it was then on social media, on Twitter as it turned out. And it they’re looking for volunteers to take part in studies and research. And I volunteered and I haven’t looked back and, I’ve been involved in huge number of varying projects and it has been absolutely fascinating and it’s opened up other opportunities as well, to get involved in… in trying to make everyday life for IBD patients a bit easier. So that that’s why I’m here and that’s why I’m talking to you Sam.
Sam
And it’s it’s great, I think, because a lot of the things that I’ve read in your blog posts and the things that we’re gonna talk about today, are things that will help not just IBD patients and Crohn’s patients, but I mean, I’ve learned some things that would be useful for me, going to my appointments as a, as a cancer patient as well, so.
Nigel Horwood
Good, good. Well, in that case, I feel vindicated in doing what I’ve been doing.
Sam
Doing good work. So let’s talk about some of the things that you do then to advocate for yourself within the healthcare system and to keep things organised, and the first thing that I have written down on my my list and what we’ve spoken about before is always seeing the same doctor.
Nigel Horwood
Yes… I’m sure other patients will have been through the situation where you see a different doctor each time and the first half of your appointment is spent with them, probably with their back to you staring at the PC screen trying to catch up, or really good old days with a huge folder of paper notes trying to catch up with how you got to where you are, and why you’re sitting in front of them and, like that really is is a waste of, to me, a waste of time, waste of resources. If you can build a relationship with your doctor, they can pick up on things that a new doctor wouldn’t. They’ll know whether you’re looking OK, whether you really are coming clean with all the things you’re suffering from, and I was, I felt, vindicated with that, because in 2018 and again in 2021, the BMJ published a couple of studies which showed that by seeing the same doctor, I mean this was quite a a major thing, seeing the same doctor reduced death risk. Now, OK, I’m hopefully not going to suffer from death risk at the moment, but. It shows that there is a genuine and research reason for seeing the same doctor, so if you can, I would always recommend asking to see the doctor and if a different doctor comes out the door and calls you in, don’t feel embarrassed to say I would rather see my usual doctor, if they are available, and I’ve done that several times. You could even say to them, to the nurse who is doing the reception. Could you put a note on top of my folder that says to be seen by Doctor X rather than Doctor Y? Real benefits I I say.
Sam
That’s really good to hear that this is something that’s backed by actual research, because I think it’s one of the things where. People might think that if I’m fussy about wanting to to see the same doctor, people might think that I’m being demanding or, you know, just, you know, being a little bit fussy or or something. So it’s it’s good to have, as you say, That vindication to, to know that actually this is beneficial to anybody who’s a patient, to see the same doctor.
Nigel Horwood
Yeah. I mean in the in when I was first diagnosed, it was very much doctors were Gods, you didn’t question them, and you did whatever they said. And if somebody else came out the door to see you, you, that was it. But now I feel that the emphasis has changed, and I see consultants as a resource I can use to manage my health. Not as somebody who is going to tell me what to do. It’s it’s all going to be shared decision making, and if you’re making a shared decision, it’s so much nicer if it’s someone you’ve already built a relationship with, and who knows, not just about your health, but maybe what your outside interests are, and what you would consider to be a reduction in your quality of life. It’s it’s a big old subject that. Maybe for another time.
Sam
It is, yeah. And I think that’s a really good way of looking at it, though, I think that. If you’re going in feeling like you’re having these shared decisions with your doctor, and you’re an equal partner and there’s somebody there that can can help you to to do that, then, then that’s very empowering. And I put it along the same kind of lines of, when I get a letter for an appointment coming through, I’ve reframed… it helps a little bit, I still don’t want to go to appointments and scans and things, but it does help to think of it as an invitation, and to always know that actually I don’t have to go to appointments. I should. And I know I should, and I do. But we we all still have that control that ultimately, we don’t have to do these things, but we do them because we are empowered to to make the right choices for ourselves.
Nigel Horwood
Yes, I agree with you. I mean, I came up with. It’s got quite a clip where putting it, but I say. But my consultant is the expert in my condition, but I’m the expert in my health. So, by using those two sides of the equation, you can hopefully get to the to the right treatment or the right answer, or the right surgery. That it’s gonna suit you the best and give you the best quality of life.
Sam
Absolutely. And I think one other thing as well is. If you’re going in and you’re seeing this new Doctor and you have to go through all of your medical history with them over again, and they’re asking you questions like, what happened here? What operation did you have here? It’s quite stressful and emotionally taxing, isn’t it, as a patient to have to revisit that time in your your life that was, you know, potentially very distressing.
Nigel Horwood
Yeah. No, I can. I can understand, now somehow and I don’t know how, I believe it’s going to be the subject of my next blog post for the BRUK. Is how I’ve managed to get incredibly laid back about appointments, procedures and everything. Something happened back in, say, 2009 that really changed my attitude 100%. But I don’t want to spoil that.
Sam
OK, we’ll come on to that, will we? OK. I hope that that’s something that I can feed off, cause I’d like some of. That laid back… I’d be like it.
Nigel Horwood
Right. Yeah, it doesn’t. It doesn’t always work, because if you’re laid back, the people around you get even more stressed.
Sam
Right!
Nigel Horwood
As I as my wife keeps pointing out to me. But I like laid back, it’s good.
Sam
- Well, the second thing that I have on my list is listing and diagramming your previous symptoms, procedures, medications, all of that sort of stuff. And unfortunately, because this is an audio only podcast, I think it would have been great to be able to to see one of those diagrams. But can you tell us a bit about that.
Nigel Horwood
Yeah, it got to, I think it’s about 2012 and, and it wasn’t just Crohn’s and IBD, I’d, I’d start to pick up some other issues, partly due to Crohn’s, partly due to surgery, and I couldn’t make head nor tail of it. I couldn’t understand the relationship between these various strands of my health, and it seemed to me it was like a jigsaw. So I took that metaphor, and I drew a diagram. And basically the major pieces of the jigsaw are the major events in my health history. And then there’s lots of little side events that fed into them, things like MRI scans or infusions. Things like consultations and whether we took a decision or whether we deferred the decision and by doing that I can get all my medical history from 1977 through to the current day on one diagram and it has proved really useful. Now I unfortunately ended up in A&E in March this year, and the doctor started talking about, well, I’m not sure what I gave him a copy of my diagram and it shut normally shuts them up for about 5 minutes whilst they look at it and they just go “Oh… this is very useful. Can I stick this in my notes?” So I’ve found it really useful because as you were saying, when you’re being asked about, well, what happened in that year? Or, why did you have this done? What surgery did you have? It’s all there. And if I want to get more information, at least I have data I can then go off and, have a look at. And it’s it’s it’s proved really, really useful. Because I did that, I then wrote a book. Or I wrote a book because of that. And and I feel now I’ve got something I can put on the shelf. And if anyone asked me a question, I have the definitive answer. I haven’t got to go through. I’ve got 8 A-4 files of notes at the moment, I don’t have to go through all of those to get the answer they’re looking for. It gives me a chance to manage and understand my health better.
Sam
Yeah, that’s, that’s really good, that it helps you and your doctors as well and, interesting that you mentioned writing too because. When I wrote my memoir, I mean I do a lot of sort of writing, poetry and things anyway, but when I I wrote my memoir, it was really just writing all of my health experiences from the beginning to the the present, and it it really helped me to just to put everything in in order, because I think things get get a bit muddled up in my brain. I forget what happened when, and it all feels a bit muzzy.
Nigel Horwood
Yeah, definitely.
Sam
So yeah, I guess writing and also, sort of, diagramming and be able to see it in a visual way are both, both different ways of achieving that, that kind of being able to make sense of it all for yourself as well.
Nigel Horwood
But certainly writing is something I have found so invaluable. I’ve started blogging really at the request of a friend who knew I was going into hospital. For a pretty major OP, and she said, “look, why don’t you start a blog?” “Oh nobody wants a blog. Why would anyone want a blog?” She said, “no if you write a blog, we can log into it each day, and we can see how you’re doing.” So that’s how I started. And since then, I found it helps me to become very objective about what’s happening to me. And not subjective. So if I’m going in for a new test like I don’t know liver biopsy or a bone marrow biopsy, which sounds pretty scary. And I heard that, certainly liver biopsy, is described as probably the worst, the worst test for patients to go through. I treated it as a, this is an experience. Let’s report on it. And that really, really helped. So I’m a great advocate of writing. I know you are. And yeah, anyone, keep if you don’t keep a diary when you’re in the hospital or, just a health diary, I’d really would recommend them.
Sam
Yeah, it sounds like it’s quite a good way as well if, if you are blogging, or if you’re sharing it with other people, then you can tell everybody what’s going on at once and you don’t have to. Have the same conversations over and over, which again could be a little bit burdensome.
Nigel Horwood
Exactly. And, and also you do get feedback from complete strangers who may either have been through the same thing or about to go through the same thing. And it’s great to get support from them, but also be able to give support to others it, it’s nice… we have a nice little IBD community out there. And and we support each other. It’s great.
Sam
The Internet is is a bit of. It can be a little bit of a double. Edged sword, can’t it?
Nigel Horwood
Ah, ah, now there’s a pet subject and. We might. Yes… we could come on to that having, having had a new diagnosis in the last couple of weeks. Yes, that’s a interesting one about. Doctor google and social media forums. And the perils of of using them.
Sam
Yeah. Is is that…
Nigel Horwood
Now, I don’t know if you want me to go into it now, but I…
Sam
Happy for you to. We we can wander around and come come back. Go for it.
Nigel Horwood
Well, I’ve recently been diagnosed with, and I’m going to have to read this because I can’t remember what it means. Even my consultant was struggling, superior mesenteric vein thrombosis.
Sam
Right.
Nigel Horwood
This so we have this new thing, so I thought, what do you do? You look up, don’t you?
Sam
Ok.
Nigel Horwood
Google it. So I googled it. The first page I came to basically said; It’s fatal.
Sam
Ohh gosh.
Nigel Horwood
I’m thinking… great! Not good about it. Next page I came across said, this is a magical condition and can have fairly mild consequences. And that is the danger. What, What you have to do is look behind some of these studies and reports and understand that there may be other factors that are also causing the risk factors to be much higher. I had a single thing with portal vein thrombosis, which my doctor, the Doctor Who was standing next to me in the ward round said. Do not look this up. So I didn’t. I told my sister, and my sister looked it up and rang me straight back and said “Ohh dear!” and I thought no I don’t want this, so you just have to be very careful. You know, that was what, 11 years ago, well, I’m still here. Yeah, be be careful and. The other one is the forums. And I know we’ve discussed this before, but in my opinion and I haven’t done any research on this, people who use forums are going to be people who’ve got problems, who are looking for support. So if you read a forum, it’s going to be heavily weighted to the negatives. The people who are doing really well are probably out doing some, you know, skydiving or some some lovely, risky activity and couldn’t give a… What’s the word? What’s the polite word? A stuff. Yeah, about reading a Facebook forum about some disease that they yeah, as far as they’re concerned, got under control. So I do worry that the first thing somebody does is, looks up on Doctor google and then goes to the first forum they can find with the name that matches what they’ve been diagnosed with, and I have seen some really horror, very tragic cases of people saying I’m getting so wound up. I’ve read all this, it’s really bad. I can’t do the opposite and say, well yes, it can be really bad, but there are. Not everybody. We all. Suffer, for instance, IBD differently. So yeah, I do get concerned about the Internet. Now when I was diagnosed, there was no Internet. There were no computers so we certainly, couldn’t have Internet. And so I lived in bliss ignorance, for many years. And was it better then? No, probably not, but at least I didn’t worry when I was diagnosed. It was, nobody had heard of Crohn’s disease anyway.
Sam
I mean some, sometimes you can Google something and before you’ve even clicked on a Google result you have got the little thing that says: people also ask, which would also be quite scary.
Nigel Horwood
Yeah, we tried doing that for… what did I? I did either Crohn’s or colonoscopy. I did it for one of the two, and you could see what the top 7 concerns were of people.
Sam
Right…
Nigel Horwood
All really, really horrible concerns, you know, really negative things that I’m not saying IBD isn’t negative, but there are ways of improving your life, once you’ve been diagnosed so it’s not please, it’s not all doom and gloom.
Sam
- Then what’s next on my list? I have keeping notes and making lists for appointments.
Nigel Horwood
Right. Well, I would say if there’s just one thing to take away from this podcast, is, when you go for an appointment, have a list of the questions you want to ask and maybe not just questions you want to ask, but maybe the questions your partner wants to ask because the worst thing is you go in there you have your consultation, you may get overwhelmed by it, especially if it’s probably quite a new thing for you. You come away and somebody says, and what about this? and you go ohh I forgot to ask. So I’ll just say, write a list and have it there. But it it’s a good management tool you can tell I used to be. I used to work in project management so I’m trying to use the techniques that we had for managing megaprojects into, into your health. If you’ve got the list, you can say to the consultant. Here’s my list of questions, and then you’re setting the scene for that appointment, until you get to the end of list, the appointment isn’t over. So there’s no way to try and get you out the door after 10 minutes. Not that I’ve ever had that happen… I add. But it sets the thing for it. Here we are, here are the list of questions when we get the bottom, then we can actually finish the consultation. And the other thing is if you become emotional, which I tend not to, but I can understand how easy it would be to become emotional. And you’ll find it difficult to get the questions out, you can pass your list over to the consultant and and just say this is what I want to know about. So it it’s really useful. So that is my top tip for dealing with appointments.
Sam
And ideally, if we have somebody that we could bring with us that, that would also be great. I think that it was really useful for me having my my partner in with me. But that was pre pandemic. So I don’t know what it’s like now if you can bring partners in again but for a long time it had to be just me going to my follow-ups. Because he wasn’t allowed in with me.
Nigel Horwood
Look now nowadays you can. Yeah, you can, you can accompany people in.
Sam
That’s good.
Nigel Horwood
I mean, normally I’m. I’m on my own because I’ve got used to doing all these things on my own and my wife needs to be here to manage, home, animals and things. So yeah, nowadays you can take someone in with you and yes it can be very, very valuable because they can put a slightly different aspect on it. But I have heard that people are actually, video recording their appointments now I’m. I’m not,
Sam
Oh?
Nigel Horwood
I know. I’m not so sure about. That, or even just audio recording. Some do it secretly and I that just doesn’t ring true. Not for me.
Sam
Yeah, I’m not sure about that.
Nigel Horwood
But when you’ve got your list, the other thing you can do with list. You can write the answers down, because when the follow up letter comes through, and some clinics are brilliant. I mean I went to a thrombosis clinic a week ago. I’ve already got the follow up letter that clearly covers everything we discussed. Brilliant. I’ve been to other clinics. I won’t name them, but it was a year and no follow up letters. When they did come through, they were perfect. They covered everything, but I could check them because I had written on my list of questions the answers that we’ve come up with. So it it’s a good way of checking that what was discussed actually it’s then reported and recorded in your note.
Sam
Right. Because I mean the other thing that I’ve got on on my list here is in ensuring that appointments have been booked. So, if you’ve been to an appointment and you’ve written something down and sort of said, I’m gonna send you for this test or whatever, if you got that written down. Then should you not hear anything, then you can follow that up and make sure that happens.
Nigel Horwood
Yeah. Yeah. Medical secretaries are brilliant. Yeah, but. And. And they’re the ones. If you. If you can make friends with them. It’s it’s ideal because you you can ring them up and, say that that video capsule is that being booked yet? Or, can you help me? Ah those 3 words that… 4 words, can you help me? Yes, they are the best. That will be my number 2 tip. Always start your sentences when you’re seeing somebody. Maybe behind reception. Can you help me? It’s brilliant. The doors it can open.
Sam
That makes people want to help.
Nigel Horwood
Exactly, exactly. And it works in all. In all, in all aspects of life. It’s proven.
Sam
So, have there been any times when you thought ohh I’m. I’m glad I did that or I’m glad that I checked that because if I if I hadn’t have done that then something would have slipped through the cracks.
Nigel Horwood
Well, recently I I knew that I was booked for. Or was going to be booked for a video capsule endoscopy and I double checked. And the request was waiting on something else happening, so I could clear that log jam, and now I’m just waiting for the appointment to come through. But I know the request is on the system because I’ve spoken to someone who said, hang on, let me check. Yes, the request is on the system. So, it is worse. Maybe if you haven’t. Well, this is the trouble. Waiting times at the moment can be fairly extended for simple procedures. Some procedures have to be carried out at a certain time. So for instance banding, I get my varices banded in my oesophagus. And they, that’s done on a four-weekly basis, if you need it, you have to be seen within four weeks to come back and check, but other ones can be so this video capsule endoscopy could be six weeks, could be eight weeks, which you’ll see. But I’ve got an appointment in eight weeks time where they want the results of it. So, we have a sort of a time window.
Sam
Right. You got a deadline.
Nigel Horwood
Yeah, exactly. Exactly. So, you know, it’s just we’re bearing this in mind putting it on the on your calendar, you know, check up maybe two weeks after an appointment, but you know, check but. Whatever procedure is has been moved.
Sam
I’m wondering about like the learning curve for all of this. Then I mean did. It take you. A long time to discover that some of these things would be helpful for you, like the the diagram and the making notes. All of that sort of stuff. Or was any of it stuff that you kind of did right from the start?
Nigel Horwood
We’re saying because of the the nature of my job, chasing people up, making sure things got done on time is is part of something I’ve lived with for 40. Yeah, 40 years, 45 years. So the, the, the, the idea of doing all this was already there. But I keep. I keep referring this 2009. When something changed and that change was, I was told that the drugs were the final last resort and if I didn’t react to them, then I will be having surgery. That, up until then, it was the normal thing. You go in sick, some consultant tells you this, you just have a short discussion and then you go away. Once I knew I was going to have surgery, both myself and my wife were called in to see the surgeon. The lead gastro and my own gastro, and we all sat down. I can still remember it now. It’s a hot day in a little office in in our local hospital. One guy was sitting on the on desk eating a Mars bar the, the, senior consultant was sitting in the chair on the desk and the surgeon was standing next to me. And finally I thought, wow, they’re actually listening to what I’m saying. What my wife saying, we’re having a proper adult shared discussion. And I think that suddenly picked off. This whole idea is ohh you, you can have a part of the management of this. You don’t just have to listen and take what you’re being told. And then that progressed. They decided they couldn’t cope with the recovery at the local hospital, they said the operation was too complex, so they referred me to Saint Thomas’ up in London and and wow, I mean, just to go in there and see how they operate and talk to enhanced recovery nurse stoma nurse. Again full 2 hour discussions none of this, 10 minutes and looking at your watch, I’ve gotta go out, I’ve gotta get next patient. And and that really had a big difference, and and that’s what hit me off into, yep, we can, we can work this one together and come up with decent solutions that suits everybody.
Sam
Wow, so I’m just thinking then maybe it would be helpful for somebody who perhaps hasn’t had that kind of experience, or doesn’t think that they’ve particularly had that kind of experience to to think about well. OK, have have there been times in my journey where I have felt a little bit more like an equal or has there been times when you know when when I did feel like I had an equal partnership in in these shared decision making, and and just try and grasp onto that feeling.
Nigel Horwood
Yeah, I I suppose really the the very first time having, and as I said it was this meeting with the surgeon, that the very first time I realised I could influence things was when I was told I needed Infliximab, I was told takes a long time to get approval. It’s a very expensive drug, you know, it’s going to take at least four weeks. There’s various committees it has to go through. And after two weeks, I’m desperate because I’m feeling absolutely awful. So I rang up the chief pharmacist at our local hospital, managed to get his number. I can’t remember how. Rang him up and said, can you help? There we are. Those. Can you help me? And he said “You don’t need to go through all those hurdles, so give me 10 minutes. I’ll ring you back 10 minutes” Later he rang back said, “yeah, it’s all approved”
Sam
Wow!
Nigel Horwood
And I suppose really. Yeah, having thought about it, that is the thing that really kicked off the wow! You can do things here. You really can influence how you are treated. So yeah, it’s it’s worth it and you should be your consultants and doctors should be doing shared decision making with you. You shouldn’t be being told and you should be seeing them regularly and… and I know it’s not equal across the country and that some hospitals are better than others. I if you don’t like your hospital. I mean it sounds very easy for me to say, you can just change hospital. I mean I can move from my local hospital to Saint Thomas’s because I felt the care was better. So, it OK, I can travel up to London. I can understand if you’re stuck out in the middle of some country area and it’s very difficult to, to arrange for travel, childcare and all things like that, to make a trip to a major hospital… a long way away, then you you can’t do that. So really the only alternative is trying to improve your local hospital. Again, I can say it sounds easy, but I know it’s not.
Sam
Well, probably. Sometimes people don’t even realise that they have that option to to change hospitals or to change doctors or get a a second opinion. A lot of the time, people might just feel stuck, but it’s good to think, ohh actually you know, what would you do? If you could improve your care in any way, you know if if you had the option to change something to change hospitals like maybe maybe it is actually possible and then people could get get a different care.
Nigel Horwood
Yeah, yes, I mean, I also. Like I did fall out with a senior gastroenterologist at my local hospital but that’s another story you’ll have to read the book to hear about that and the very frosty atmosphere that created.
Sam
You should tell us about your book, just while. We’re on the subject.
Nigel Horwood
Yeah, I mean, it started as a bit of a, well, not a hobby. I just I need, I needed, as I said earlier, I needed something on, on a shelf that I could… was, was my ultimate reference book. And then I thought well actually some of what happens is quite funny, some of what happens is quite scary, and if I can make it more, I don’t know, if I can help other people who are just about to go through the same things, then great, I feel good. And so I wrote it and I couldn’t think of the name. And then I remember what the surgeon said to me. He said. Ohh yeah, we’ve had a look at the CT scan, and it looks like you’ve got an octopus in there, so ahh octopus. That’s good. And then I thought NHS the NHS is like an octopus cause it’s got all these different, ‘tentacles’ all these different departments and you have to somehow get them all working in unison, so for instance I have haematology, hepatology and gastroenterology and you have to keep them all working in harmony. Otherwise, you get appointments in the wrong order. And then you have a wasted appointment because something hasn’t happened that needed to happen before you… so next time. Yeah, it’s like an octopus, so I called it Wrestling The Octopus. And it is available as a free download because I’m not going to charge anyone if it, if it helps them. Free download as an eBook.
Sam
What’s the address? Where can people find out?
Nigel Horwood
Well, it’s it’s www.wrestlingtheoctopus.com. Yes, I I went out and purchased the domain name.
Sam
Love it.
Nigel Horwood
But it’s fair. Yeah. If you look under the book tab, it’s it’s there and you it’s various formats. So, Kindle and PDF and whatever the other one is I can’t remember. Needs a new chapter to cover this latest…
Sam
Well, that’s that’s the thing, isn’t it? Things keep happening then you have to keep writing more.
Nigel Horwood
Yes, you can lose the will to, to write at some point. Especially when the sun’s shining.
Sam
There’s just so much rich, interesting stuff here, and I think, yeah, and it all does sort of go back to to that kind of, it’s basically project managing your- yourself, isn’t it project managing your, your diagnosis and kind of, the NHS and its staff as well your kind of the project lead for for everything really.
Nigel Horwood
Well, again. If you, if you think the, the ultimate goal is to get yourself as well as possible, and to have as best quality of, the best quality of life that you can achieve given the constraints that chronic illness or illnesses may impose upon you, then as long as you treat that as your ultimate goal, then yeah, you can, you can organise people. Now I have met quite a few consultants in my time and not all of them are… Oh dear, this is this is going. I- I’m I shouldn’t make a global comment but not all of them are good at managing their time. They’re brilliant clinicians and things like that, but it’s interesting, I did a training course for guys. I took part in a training course and it was so interesting to hear the different, all the different characters, the various surgeons and anaesthetists had. But then they’re just human beings like the rest of us, and we’re all different, so some of them just aren’t designed to manage their timers well as maybe, I can, or you can, with a vested interest in getting the best out of the system and make your life the best you can.
Sam
So I may know the answer to this question already, but is it always easy to be proactive and to advocate for yourself? Or are, are there times when it’s more difficult.
Nigel Horwood
Yeah, it it gets more difficult as more departments get involved, because if you’re just getting one, one department, fine, but then when other departments start, say, getting involved or when you go to A&E at your local hospital. And there is no universal record system, so they can’t look at your medical records from, from the other hospital so, so for instance, my local hospital cannot see the records from Saint Thomas’ and vice versa, so then that, that is more difficult because you have to try and. Well, you have to try and get the right people in contact with each with each other, so it’s always worth knowing their e-mail addresses. And if you don’t know their e-mail addresses, you can normally work them out, and I have done that in the past when I’ve needed, when I’ve hit a roadblock, when I was having my reversal operation, I hit this roadblock, I was due to have it at Easter time and I couldn’t because my platelet count was so low, which was due to… that’s another story. And the nurse kept saying to me, you must get a letter from the hepatologist. Well, I tried and tried and I mean I really did try to get the letter from my local haematologist. So I’ve got haematologists at my local hospital and I’ve got the operation at Saint Thomas’ and trying to coordinate… I finally got the letter the day after the operation was cancelled, and then I thought, what do I do now? I said, well, can you just get me back on the list? Well, that’s down to the surgeon. So, I found the surgeon’s name and emailed him, and I was back on list within the day. So, it sometimes it feels wrong to do this things, but. If you keep that focus on the fact that it’s your health and essentially your well-being and your quality of life, then some of the things that maybe you wouldn’t be so pushy about. It it makes it a lot easier.
Sam
What about support from other people then? Is there somebody who helps you to advocate for yourself as well?
Nigel Horwood
Not advocate for myself, but my wife supports. Me through everything and she gets the she gets the messy jobs, so if you’re squeamish, you may not want to listen to this little bit, and you’re probably… but oesophageal varices, they’re quite nasty condition, their veins, like varicose veins that grow up your oesophagus and one night mine decided they’d had enough and they just burst, so whilst I was being taken away in the in the ambulance with the siren and the blue lights going, and my wife was left clearing up… what should I say? Up all the red stuff.
Sam
Oof, oh dear…
Nigel Horwood
And she did it so, that is my support, it’s my, it’s my wife. But and also neighbours were, were fantastic when I was in hospital, because she doesn’t drive. It’s difficult for her to get to the station so they would get her to the station, to get up to London, and they’d look after the animals.
Sam
No, that’s good.
Nigel Horwood
So you really do find out, who your friends are.
Sam
And people can give support in so many different ways, can’t they? I mean, there’s there’s that practical stuff of, yeah, looking after animals or children or cleaning the house or cooking the food and then like, emotional support, as well.
Nigel Horwood
Yes, yes. So it’s yeah, things like that are absolutely valuable. So I, yes, my book is dedicated obviously to that.
Sam
Oh, that’s wonderful. Is there anything else that we missed off off the list? Is there anything else that you you had that you’d like to share or any kind of, final words of advice?
Nigel Horwood
No, I’m sure you wanted a yes, but I think really we’ve covered it, we’ve covered it all.
Sam
No, that’s good. I think it’s, it’s been, it’s been great. I Think that’s it’s all going to be really useful for for people and yeah, grateful for you sharing all of your your tips and and tricks and I feel a bit empowered now actually.
Nigel Horwood
Good! That’s that was the whole point in doing all this was, you know, I’ve been helped. Let’s help some others whilst I’m still able to, before I become too decrepit and elderly to do anything.
Sam
Well, you’re doing brilliantly, and I’m gonna keep an eye on the Bowel Research UK website for your next blog post. I like… your book is on my to read list. It’s it’s been there for about a year…
Nigel Horwood
It’s only 300 pages long.
Sam
300! Oh Gosh.
Nigel Horwood
Yeah, yeah, I wouldn’t say every chapter is vital reading, some of them was, was put in just to… there’s, there’s one which basically said; not a lot happened in this period, but I was, I took steroids for 30 years continuous, and and I wanted people to to know because most people try and get off and within a month. But I don’t think it’s had any bad side effects, but I’ll let others be the judge.
Sam
Well, sometimes it’s good to just not have anything eventful to need to write out.
Nigel Horwood
Yes ohh but yeah, unfortunately yes, then the the rest of the however many 20 chapters it starts to get more serious.
Sam
Well, I will be. I’ll be picking that up. I’ll be reading that, it’s been on my list for a long time. But yeah, perils of doing a PhD means, yeah, I get a nice big stack of them.
Nigel Horwood
Ooh, yeah, yeah. wouldn’t mind doing it PhD, but I think I’m probably a bit long in the suit for that.
Sam
Never too late. Well, anyway, thanks so much for coming on the podcast and talking to me today.
Nigel Horwood
That’s alright, Sam. I thoroughly enjoyed it!
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.