Meet the Mancunian - 4.12 -Talking granting wishes to terminally ill adults with Susan Roughton

Transcript - Susan Roughton

Intro

Welcome to the 12th episode of the Meet the Mancunian podcast, social Impact Stories from Manchester. This is a season finale of season four.

I am Deepa Thomas-Sutcliffe, your friendly host. On the streets and nooks of Manchester, my inspiring Mancunian guest tackle their causes with grit and passion. They are leaders, worker, bees, and community hosts. And they share their stories to inspire you all through the season.

Relax, grab a brew and listen in to the Meet the Mancunian Podcast on Apple, Google, Spotify, or any of your favourite podcasting platforms. You can also check out all the episodes of my new website, www.meetthemancunion.co.uk.

Don't forget, on my new website, you can choose episodes by category or by theme. For example, episodes on homelessness or all episodes dealing with sustainability, or all episodes dealing with local history, or all episodes dealing with disability awareness as some example.

I will be releasing a bonus episode next Tuesday on 14th February, 2023, and then taking a two month break for some travel until 11th April, 2023, when I will launch season five. In the meantime, I hope you can check out some of my interesting guests from Seasons 1, 2, 3, and four. There are 48 amazing episodes for your listening pleasure.

Passionate about supporting the terminally ill? We hear from Susan Roughton, Founder, Purple Heart Wishes in this episode.

Episode 12

Deepa Thomas-Sutcliffe: I'm delighted to introduce my guest, Susan Roughton, Founder, Purple Heart Wishes. Thank you so much, Susan, for joining me today.

Susan Roughton: You're welcome. Thank you for inviting me.

Deepa Thomas-Sutcliffe: So tell us first about how you find your passion for supporting the terminally ill. I know that you had a personal family experience that motivated you.

Susan Roughton: So in 2009, I found out that my daughter Lindsay had a brain tumour. It sort of totally rocked our world and from the point that we found out we fundraised actively for the Brain Tumour Trust, just to see if we could try and find a cure for that. For what she had particularly….

So in 2009, no, November, in December, they debunked it, as they call it. They removed the, the tumour and then over the next 12 months she was going for scans, et cetera, and everything was clear. Then come the end of 2010, they said, oh, it's come back. And we were devastated. So, they act very quickly with these sort of things. And because it was fast growing, they took it out quickly.

Susan Roughton: They can't get all of it because as they dig deeper into your brain, it's going to affect everything that's going on. So they took it out and over the next 12 months. Again, everything was going along happily. She had radiotherapy, didn't have chemotherapy at the time, but she had radiotherapy.

And then they said, oh, it's gone. This was at the end of 2000 and beginning of 2001. But then in April I started to notice the symptoms, of her tumour. So the moodiness, the fact that she couldn't get out of bed, she had really bad headaches and everything like that. So I said, okay, we need to go to the doctors again.

And this was in the Easter weekend in April, and we had to take her into the hospital and she was gutted. She hated the hospital. And she, they kept her in over the Easter weekend. Then they called me in. Lindsay would've been 27 at the time. And they said that we can't take it out because if we take it out, it's going to affect her standard of living, her quality of life.

So what do you want us to do? And Lindsay had spoken to me before and said, if it comes back, I don't want another operation. So obviously I had to listen to her wish. And we didn't take it out. But from that point on, instead of raising money for the Brain Tumour charity, we decided that we were going to give Lindsay every single day, something fun, something fun to do.

And one of her biggest wishes was to go to Thailand. So we raised a lot of money for her to go to Thailand. We had a very generous benefactor who donated a lot of money to that so that she could go and do it. We hadn't even met this person before. They weren't known to us. And he donated quite a big sum of money, which allowed her the opportunity to go to Thailand for three weeks.

Now, the consultants had said, don't let her go. If she goes, she's not going to come back. And she didn't want to go with me, she wanted to go with her friends. So her friend, who's a doctor actually went with her and I was like, okay, he's a doctor. He knows what to do. If anything's going wrong, you'll keep an eye on her.

When I was saying goodbye to her at the airport, I thought, I don't know whether I'm going to see her again. But then she came back and she survived another 18 months after that. And every day I, I took on the attitude that every day was just going to be something special.

We weren't allowed to be negative in front of her. We weren't allowed to argue in front of her. I'd made the decision, if you're coming to see her, you have to be positive. You have to make every single moment fun. And so that's what we did. And, we carried on making everyday fun.

And then unfortunately we lost Lindsay on the 26th of February, 2014. So after a bit of, okay, I don’t know what to do, I didn't raise any more money for the brain tumour charity, didn't sort of raise any money at all, to be honest. And, and then about a year later I just thought, you know what? I want to do this for other people.

I want to make it special moments for other people. I want to be able to say to somebody that's not very well, that can't go for a weekend breakaway, or , can't buy their wife a gift or anything like that before they pass away. I want to be able to do that, to be able to create a memory for someone else.

So we set up Purple Heart Wishes and St. Anne's Hospice in Little Holton where Lindsay was cared for. We told them that we were going to do this charity. And they were one of the first people that contacted us and said, oh, there's a man that's dying. And his wife's got control of all the finances, but he just wants to buy her something really nice to remember him by, like for instance, he wanted a Pandora necklace and it was 80 pounds.

And I'm like, well, we can do that. So we bought the necklace, we bought some flowers and everything like that to make it really special. And we took it to the hospice. and the care workers said he opened his eyes long enough to give it to his wife. And it just makes you think, right, okay.

That moment was such a precious moment for her that she'll always remember that time, that moment, that happened because he thought of something that he wanted to give her. That he could, he had control of, and she didn’t. You know what I mean?

Deepa Thomas-Sutcliffe:  Yes. I mean, such an amazing cause. I have lost a dear friend who, I think he went in four months, if I remember right to brain tumor as well. And he was only 31 at the time.

So, yeah. I can understand what you're doing is so, so important. So to the friends, to the family, of those loved ones, and of course to the loved ones itself, who are unfortunately, terminally ill.

So tell us a little bit more about Purple Heart Wishes.I can imagine it was a very difficult time for you to be starting a charity, but it's a lovely way to pay tribute to your daughter

Susan Roughton: Yeah, definitely. I actually have a full-time job, so I actually do Purple Heart Wishes on the side. And during the pandemic, obviously we didn't raise any money. We didn't grant any wishes. It wasn't possible. We weren't able to really do anything.

And when we came out of the pandemic, I was at a point where I was like, oh, we're getting all these wishes. I have a full-time job. Which I can't put the cost of my lifestyle on the charity, I wouldn't want to do that to the charity.

And so I thought, okay, what we going to do? So me and my other daughter Lee, we was like, okay, what we going to do? We're getting all these wishes. We can't cope, how we going to manage this? So in the end, we put out an advert on Facebook to look for a wish granter. A young guy, Mark, actually came forward who lives in Cirencester, which is down south in Gloucester, which is where our charity is registered.

Although me and my daughter Lee live in Manchester. And I thought, so what? It doesn't, they don't have to be near me. You know what I mean? So long as we communicate almost every day, we have a meeting once a week, you. We can actually do this. So we took on this wish granter called Mark, who now manages all the wishes.

So he gets everything. He looks after all the wishes for us. But the charity has just gone mental. So before the pandemic, me and Lee were probably getting about 12 wishes a year. So not many? Now since January this year, we've got 78 applications. Well, we've got 116 applications in, but 78 wishes that we've granted.

Deepa Thomas-Sutcliffe: Wow.

Susan Roughton: So the charity has really taken off. A lot of the people that come to us will be charities themselves or hospices. Even the NHS. Next week I'm going down to Birmingham to do a talk at a myeloma cancer NHS meeting that they're holding and I'm going in there to talk about the charity, which is an absolutely amazing opportunity of course for us, , so we are, we are getting heard of and we do do a lot of charity work here in Manchester.

So at the moment we have a regular gig with Manchester City Football. So we work in one of their kiosks. And basically we don't get paid, but we get a percentage of the takings from the kiosk. So the more volunteers that we can get, the more kiosks we can have, which means the more money that we can make.

So, from Manchester City Football Club, people volunteer in their time raised 30,000 pounds last year, which is a massive effort on their part. Going in every day. not every day, but every home match and concerts and things like that. So it's amazing. what we can do.

Deepa Thomas-Sutcliffe: Oh, that's great.

Deepa Thomas-Sutcliffe: Can you tell us about some of the wishes you've, granted? You talked about the gentleman who wanted to gift his wife a Pandora necklace. Are there others that have kind of stood out to you? Because obviously you’re granting a lot, but maybe a couple.

Susan Roughton: We had a young girl recently. She was only 21.She wanted to do a home dining experience, for her family. She wanted us to arrange a celebrity chef to come into her home and cook dinner for her family. And then she wanted a murder mystery experience. And so we came, we sort of did all the invitations for her because she was inviting her family.

We got a makeup artist in to do her mom's makeup. Had the house decorated. We've got hold of aa young chef called Ryan Riley who came in, who is just getting to be known in the celebrity chef world. And then we got a, a company coming to do a murder mystery experience with a company called Murder Mystery Mayhem.

And they came in and donated their, their time for free. And basically, did the whole shebang for her family. And they had an amazing experience with that. Unfortunately the young lady passed away a couple of days later. That's how close people are to us granting wishes and them passing, it's like they're waiting for their wish to happen and then, and then they don't have that wish anymore. You know what I mean?

Yeah. And it's, and it's quite sad to know that sometimes people don't come to us until it's too late. And I always said that about Lindsay. Lindsay would not accept that she was. going to die, basically. And when she was in thehospice, the nurse said, we need to tell her.

And I was like, no, we're not telling her. While she still has the belief that she's going to live, we need to not take that away from her. And I know that they'd taken her in and said to her, you're really poorly. And this was like two weeks before she died and she just turned around and said, yes, but I'm going to get better.

So I think to myself, okay, if she's thinking that she's a young person that doesn't want to accept that she's going to pass away, then all of those other people will be thinking it too, and that when they come to us, it's always almost as if, okay, there's a realisation that they're going to pass away and it's going to be soon.

Because when they come to us, you can guarantee within maybe two or three weeks they've passed away, which is quite sad. I'd like to think that there were parents and friends out there that know that somebody's going to pass away and that they would come to us sooner so that they can enjoy the experience more than leaving it till the last minute.

So that's what I've always sort of thought, and, and I, and from experience, this is what I'm seeing with lots of people that come for wishes. It's, it's not long afterwards that they pass. We do have a good relationship with people like Arsenal and Liverpool and things like that where we've been managed to get people to go see the football matches and things like that. And, parents who have arranged that for their sons and, , it's been, it's been lovely that people are becoming, quite accommodating despite the current climate with financial situations and stuff like that. People are still being quite generous and accommodating.

So, yeah, there are lots of other things. There's loads of other things, that we grant.

Deepa Thomas-Sutcliffe: Thank you for sharing that. And also to kind of putting out an appeal to listeners that if they have a family member or friend to come to you early so that there's more time and there's perhaps more experiences.

Are there challenges that you've faced while you're trying both grant the right wishes as well as maybe to raise funds or raise those experiences?

Susan Roughton: Well, for me it will always be, I'm always the fundraiser. You know what I mean? I'm always the person that's going to be asking people for money. because I don't have any sort of fear in telling my story and people will buy my story to be able to fundraise for us, to want to fundraise for us or stuff like that.

I think for me it's because we're still quite a small charity, unless you are in Manchester. Or Cirencester, you won't really hear about our charity, although we do grant wishes all over the UK. We've done Scotland, Northern Ireland, everywhere. We grant wishes wherever. The only thing for me is maybe getting out there enough to get people to fundraise for us, because I know, although you may do something for somebody who's doing it, going through a terminal illness, you'll also find that say for instance, the Cancer Trust and a hospice that may have looked after that person as well. So we might not necessarily be the person that's at the forefront of their mind when they think about fundraising. just because we granted a little wish. So that as well can be quite challenging.

But otherwise, So long as I've got the money in the bank , then I'm quite happy to carry on So we've been quite good. We've been quite stable. And we've just recently Sacha Lord. has just decided to become a Patron for the charity, which will project us a bit further up in the in this scale.

However, when you Google as we are at the top, ,

Deepa Thomas-Sutcliffe: No, I actually think it's fairly unique because I think there's Make a Wish, which works with children and I've only heard of your charity. I haven't heard of others.

Susan Roughton: I think there's four, but they're very specific to where they are. Like, so for instance, there's one down in London, which is just on the M4 corridor, which is just there, and then there's another one which only does up to 40 years.

So it's quite, and even they pass us wishes, they pass people through to us. So, we are getting a lot of traction because people are passing them through to us.

Deepa Thomas-Sutcliffe: Thank you for sharing that. I guess you talked about a couple of the wishes that you have granted.

Can you tell us a little bit about the impact you think you've made? And you can answer that in any way you want. You can share one experience or you can talk about a larger impact.

Susan Roughton: I think personally to people, we've made a really big impact. On the person that's affected by the illness and also to the family and friends of that person because for that moment in time, we know that they've written back to us, they've given us testimonials saying that we've never seen them smile in such a long time, or they've not laughed so much in a long, and that's a really big impact for me, knowing that people are feeling that we've done something so special for.

And, if it makes that person smile for 2, 3, 4 hours of a day, then their family's going to be happy as well. , And I think personally for me, that is what affects me most knowing that that's how, what the outcome of that wish is.

Deepa Thomas-Sutcliffe: Definitely. Thank you. How can interested people reach out to you and learn more?

Susan Roughton: Okay, so we have a Facebook page, Purple Heart Wishes. Instagram is @PHWishes. We have a website, which is purpleheartwishes.org. You can find us all over the place and I think, if you're in Manchester or anything like that, then you should get in touch because we have a lot of exciting stuff going on.

Deepa Thomas-Sutcliffe: Thank you.

What advice would you have for people looking to start something similar in another part of the world or another part of the UK? They want to get into this space. What, what's the best way to get around to start?

Susan Roughton: Well, I think for me, I had a personal experience. Something personally affected me. My daughter wasn't well and I made the decision that I wanted every day of her life to be a new experience.

Things that she'd never done, horse riding, everything like that. I think if you're really passionate about something, it's easy to get a charity started because then when you talk to people about it, you're going to be passionate. If you think right, okay, I'm just going to start a wish charity, but you don't know why and you don't have a story, it's very difficult to inspire people to come and help you or fundraise for you.

So that we had a story and that story was to make sure that Lindsay had a new experience every day, like I said, but it meant it was easier for me to decide what sort of charity I was going to do because I could see where the money was going. I knew that every penny that somebody fundraised for me was going to go on a wish for somebody else that was going to make them smile, however long, however length of time it was going to be, ?

It was going to create memories for them and their family when they're going through that really tough time. So it's just having a story and making sure you're passionate about it.

Deepa Thomas-Sutcliffe: Thank you for sharing that.

And an opportunity now for you to talk about anything coming up. You said there's some exciting plans in Manchester. Anything that you want to call out, please do so.

Susan Roughton: I'm not sure if you're aware, but Sacha Lord, he's the nighttime economy ambassador for the Northwest. So he's decided that he will be a patron for Purple Heart Wishes and he's also the founder of The Warehouse Project and Park Life, which means that, with his support we'll be able to go to these venues and promote the charity as well as fundraise at the same time.

But also for us, it means that we get, we are targeting the age group of people that we can grant wishes to. So Park life is a very big festival in Manchester. The age group of people that we're trying to target is 18 to 55. So that's the sort of people who will have friends and family that may be going through all of this. So this is a good, like I said, platform for us to go. The, the funny thing is, is that Sacha actually knew Lindsay, it was really a bizarre. After we approached him, he was like, oh, Lindsay came and met me and did my in-ear plugs and was talking about her and everything. And it was quite nice to think that we've come in this full circle and met somebody that was involved with Lindsay and now is going to actually be part of our charity. So that is a big thing for us over the next 12 months. We've got lots of fundraising activity going on as well over the next 12 months because we want to increase our wish granting over the next 12 months from it's current rate, it is on average, it's about seven and a half per month, but now we're going to go try and get 15, which doesn't seem a lot to many people, but to us it is a lot.

Deepa Thomas-Sutcliffe: It's double what you're doing right now, so that's amazing. Good luck with that.

Susan Roughton: Yes. So our plan, it's our plan is to do that and obviously with that we need to increase fundraising. So any fundraising activities anybody has going on that they would like to do for us, that would be absolutely amazing.

Deepa Thomas-Sutcliffe: Thank you, Susan. What I didn't mention is that we have listeners from 44 countries, so it is good that you're kind of talking about who Sacha Lord is and why Park Life is so big, because obviously it wouldn't always be known around the world.

So my signature questions that I ask all my guests, and this is my favourite bit of the podcast, it's the first one for you, is to describe the Mancunian spirit in a word or a phrase.

Susan Roughton: I think they're ultimately so friendly. I've lived all over the world, to be honest. My father was in the army. I did live in London for a short while, but I find that people down there is very fast paced, so it's like got to be quick, they don't want to talk for too long, everything like that. But you come to Manchester and they are such friendly people, and I've lived here now for, say, 15 years, I would say. And I'm, I actually enjoy it. Everything's together. Everybody will talk to anybody and I'm sure that in Manchester, when we have these tables where we have sharing tables and anybody sits with anybody, I'm sure that was invented in Manchester because, , people are so friendly, they just talk to anyone. They don’t care.

Deepa Thomas-Sutcliffe: Yeah. That's a greatt one and I totally resonate with that. As a brand new Mancunian, I'm experiencing that as well, so yeah, it's lovely.

Can you share a Mancunian who inspires you and tell us why, and could be somebody from the past or from the current time?

Susan Roughton: Oh, does it have to be someone famous?

Deepa Thomas-Sutcliffe: No, anybody that you that inspires you.

Susan Roughton: It's very difficult to say. I've worked with a couple of people , in the past. I think that, I'll tell you, the volunteers that we have for the charity, they all inspire me. They come every time, and they're always smiling. They're so positive and really excited all the time.

When we go to the football and I watch these volunteers working away and they're just so happy and [they're talking to everyone and and then people say to me, you lot in there are the best, n the whole stadium.

I just think that people who give up their time for something else have to be admired because, they don't have to do it. They don't have to do it at all. And they just come along, whether it's raining. I remember being in the in the kiosk one day and two people walked in and oh my God, they were so soaked through to their skin. And I was like, looking at them, I was like, where's your coat?

And they went, we didn't need one. And . And they were just soaked to the skin and we're all swapping t-shirts and everything like that to make sure that they're dry. And, and I just think that people that do something, that doesn't benefit them at all, but it's benefiting something else, they're to be admired.

Deepa Thomas-Sutcliffe: So a shout out to all the volunteers in Manchester . That's a good one. I'll take that.

What's the most important life lesson you’ve learned so far?

Susan Roughton: I think that from Lindsay being poorly, being positive every day. , but also if you are upset with somebody, just tell them. Just tell them what you think. Get over it and move on. Because life is so short, you don't know what is going to happen from day to day. I know of some people that we've granted wishes for. They, they've been told that they're poorly and then they could die within months. They don't have a long time to sort it out. And I know Lindsay had a friend that she fell out with and it was very difficult for her to forgive her. When I think to myself, you've just got to forgive. ,You've got to forgive everything and just move on. So if you've got something to say, say it. Move on. You've only wasted 10, 15 minutes of your day instead ofpondering on it for like three days and then having a massive row and then not speaking to each other again.

Deepa Thomas-Sutcliffe: It's a good tip, a difficult tip, not easy to follow, but it's a, it's a good one. If you could have one superpower, what would that be?

Susan Roughton: To help everyone. I would just love to be able, if somebody was suffering, I'd be there for them. My role that I have now at work, I am there for people, to come and speak to everything like that. And I just think that somebody needs somebody, and if you don't have somebody, I'd just like to be there for that person. I wouldn't want anybody to be on their own…

Deepa Thomas-Sutcliffe: …much needed at this point of time when so many people can be quite isolated. So, yes. Thank you for sharing that.

Is there a funny story you'd like to share with listeners? Maybe something that you've come across at work or even, in your being around or in and around Manchester. Maybe a  doggy story.

Susan Roughton: A doggy story. Frank. So Frank grew up in Ancoats. He's on Instagram. He's got more followers than I've got, and he's called Ancoats Frank. That's his Instagram name. So we actually live in Denton now, but whenever we go to to Ancoats, he will drag me into almost every pub that he can go into, and everybody knows him.They'll be like, oh its Ancoats Frank

Yeah, he's quite a cool charactee. I can't even think of a funny story.

Deepa Thomas-Sutcliffe: I think this one's nice, Ancoats Frank going to the pubs and checking out his loyal followers.

Susan Roughton: Definitely he's a bit of a character. He's a little french bulldog, so he snuffles and snores.Yeah, he's quite a character. You'll enjoy his page.

Deepa Thomas-Sutcliffe: I'll definitely check it out.

Well, Susan, thank you so much. That's what I have time for today

Susan Roughton: Thank you so much for having me, Deepa.

Outro

Susan, I really enjoyed learning about helping terminally ill adults. Dear listener, thank you so much for listening to the 12th episode of the Meet the Mancunian podcast, season four.

I hope this episode and the podcast itself encourages you to follow your passions, inspired by the amazing Mancunian guest who feature here.

Tune in every Tuesday for a new episode, or log on to www.meetthemancunian.co uk to listen to all the episodes and learn more about my podcasting story. Next week, on Tuesday 14^th February 2023 in a special bonus episode, there will be a focus on the most important life lessons my guests have shared on season four.

As I said in the intro, Season Four ends on Tuesday, 14th February, 2023 and I will be taking a two month break for some travel and finishing up at my current day job. Season Five of the Meet the Mancunian podcast returns on Tuesday 11th April, 2023 with a new series of inspiring guests. I have started recording Season 5 interviews and think you should enjoy that.

Please do leave a review or a voice message on my website, www.meetthemancunian.co.uk. It takes only a few minutes. I look forward to hearing from you.

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