Jo McNamara Rad Chat Host (00:00)
Hello everyone and welcome to Rad Chat, founded by me, Jo McNamara.

Naman Julka-Anderson (00:04)
And me, Naman Julka-Anderson. Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their expertise in therapeutic radiography and oncology. Unlike traditional academic resources, we blend real-world experience, expert insights, best practice, and patient perspectives.

Jo McNamara Rad Chat Host (00:21)
We make advanced knowledge engaging and accessible, supporting continuous learning and professional development without compromising patient care or your personal time by providing insights into both technical skills and career development, helping you to progress confidently in your field and shape your professional future.

Naman Julka-Anderson (00:38)
Just to let you know, our episodes may contain sensitive and difficult topics that you might find distressing or triggering. Please consider checking out another episode.

Naman Julka-Anderson (00:47)
This is episode 202, which is part of the Equity, Diversity and Inclusion series, where we will be hearing from our guest Sarah Phillips about living with an incurable condition and accessible clothing ranges. Hi Sarah, how are you?

Sarah Phillips (00:58)
Hi, I'm good thank you, how are you?

Naman Julka-Anderson (00:59)
Good, it's great to have you here. Would you mind introducing yourself to our listeners, please?

Sarah Phillips (01:03)
So I'm Sarah, I'm 34 years old and at the age of 31, my life was completely turned upside down and I developed a couple of incurable conditions, literally out of the blue, overnight, everything changed for me and I've spent the last few years trying to navigate this crazy world of incurable illness,

the new symptoms, the new way of life and trying to make the best of it and plan a future around it.

Jo McNamara Rad Chat Host (01:36)
So Sarah, if you're happy to, can you tell us a little bit more about your diagnosis journey and your treatment pathway today?

Sarah Phillips (01:43)
Yeah, so I've got a couple of really rare issues. So one is a rare genetic neuromuscular disease. It's called HNPP for short. So it's hereditary neuropathy with liability to pressure palsies, However, I've got an extremely unusual presentation of this condition to the point where they're still looking for other things that it could be,

alongside that diagnosis because my presentation is so unusual. So, I'm being studied by the Institute of Rare Diseases for that anyway. And in addition to that, I have another very unusual metabolic condition where my body is quite literally eating me alive. I burn over 5,000 calories a day and I can't maintain that on my own. So, I'm undergoing enteral feeding every single day in order to just maintain my weight,

again with this condition, it causes a whole load of other complications. I'm at really high risk of additional things such as refeeding syndrome, which can be potentially life-threatening. It's really complicated, but basically, my entire life is governed around these conditions. They've taken over every aspect of my day-to-day living. I've been paralysed

three times now from the neuromuscular disease. So I'm missing one of the two genes that you need to make the myelin sheath coating on your nerves. So every nerve in my body is demyelinated. It means it's got like less padding. So the best way to describe it is if you think of a wire and you think of the rubber casing around that wire, that's your myelin sheath and those wires inside that casing are your nerves. So I've got a lot less

like rubber casing on my nerves. So it means that I'm at increased risk of nerve damage. And anytime I get pressure on those nerves, I get a lot of trap nerves and I get nerve damage. And that can sometimes fix itself, can, you know, regenerate little bits of myelin sheath. But if the axon of the nerve becomes too badly damaged, I actually end up with paralysed muscles in my body because the nerves become too badly damaged.

So this has happened in my left foot. I have a permanent drop foot. I have six trap nerves currently and I have to self catheterise where my bladder's been impacted. That's quite an unusual presentation for my condition. It doesn't usually cause bladder involvement but I've had urodynamics which have shown that that is the case. I've had all kinds of issues. My diaphragm's been affected.

Again, that's not a usual symptom with this condition, but I've been a bit odd. So it's been quite interesting. I've been very lucky because where I have had the paralysis in my legs, I've completely lost control from the waist down three times. So far, the nerves have been able to heal and I've regained that mobility. But each time that has happened, we didn't know if it was coming back.

And I was extremely fortunate because especially the last time they actually didn't think it would. So in terms of treatment, there is no treatment or cure for that. The best thing we can do is pain and symptom management and it's trying to avoid pressure on the nerves. And prognosis wise, it is incurable. I risk obviously getting more and more nerve damage as things progress.

I just have to try and be really careful and take things as they come. In terms of the metabolic condition, the two are not related. Two very unusual problems, not at all related, but they don't complement each other well because obviously if I could carry a bit more weight, my nerves would have a little extra squish and they would have a little extra padding, but it's so hard for me to maintain my weight.

So due to that, I am on a feed 10 hours a night. It used to be 20 hours a day. I'm on a very high amount of calories. And yeah, we're just basically treating the symptoms and hoping for the best. I can't miss many of my feeds. If I miss more than two nights in a row, I have to be admitted to hospital for something called refeeding syndrome.

So this one's quite complicated. The most simple way to describe it is when your body goes into starvation mode, you start to store nutrients into your muscles. And your body's so clever, it does that as like a reserve. And then if I was to start feeding again after several days, now for most people, they've got a period of five to 10 days before they would become a refeeding risk. But because my calorie need is so high, this is significantly less for me.

So after just a few days with no feed, so for example, if my children bring home a sickness bug and I can't get enough calories for a few days, I'm at risk of this. So we have to put me in hospital and we have to check my electrolyte levels and things in the blood because as we start to wean the feed back on, the muscles go, ⁓ we don't need to store this anymore. And what they do is they dump all those nutrients that they've stored back into your blood

and that can actually change the pH levels of the blood and cause a cardiac arrest and kill you. So it's very, very dangerous. And I have at least two admissions a year, at least, just for refeeding because my dirty children have bought him a bug. So it's very complex to manage.

Naman Julka-Anderson (07:07)
It sounds like you've had to learn a lot about these conditions yourself as well. How have you managed to do that?

Sarah Phillips (07:12)
So I have literally become an expert in the field of both of them. I have read every piece of literature there is, especially on the neuro side of things, because there's not a lot. Even I've seen professors of neurology, I've seen all these specialists, and they even say that I'm more of an expert in this condition. And my consultants are absolutely amazing. They always involve me in the care. So because these conditions combined affect

multiple systems in my body. I'm under neurology, urology, gastro, surgical teams. I'm under so many different teams. And I'm the only one who really knows what's going on with all of it because everyone's very specialist in their area. And for example, when I have urology problems, they're scared to start me on treatments for my symptoms that they would normally just start because they know it's a neuro issue causing it.

So they're like, we can't do this because we need to speak to neuro and blah, blah. And it all overlaps, but it's very complicated. So I've just studied, researched, but my teams are amazing. They do always listen to me and they let me kind of steer it. I do have a clinical background, which helps. So I'm quite knowledgeable anyway, but I've had to really learn about this until I got diagnosed. I'll be honest, I didn't know a lot about either condition.

Jo McNamara Rad Chat Host (08:33)
Was going to say I've never heard of either of the conditions that you've got there and thank you so much for kind of telling us about what you're living with. I think the way that you described it I can tell that you have had to say that a lot to a lot of people but

you know, how does it impact your day to day? Because, you know, some of the things that you've just kind of flippantly said, I absolutely can appreciate just the true impact it could potentially have on your life. The fact that you've got children, like my child is now 14 and he still rugby tackles me. You know, how do you deal with having children and them having to be careful that they don't?

Sarah Phillips (09:03)
then Yeah,

Jo McNamara Rad Chat Host (09:14)
you know, get over boisterous with you.

Sarah Phillips (09:15)
so this has been, it's been massive. I don't just have children. I have two neurodiverse children and one is severely disabled. So my son has a profound learning disability. He's nonverbal and he's got severe autism. He's in a special school. It has been horrendously difficult. Like I cannot stress it enough. So he doesn't understand at all.

He's hurt me on multiple occasions. He's tried to pull my tube out. I remember being in hospital and they took me off to this little room and they were like, the nurses have reported you're covered in bruises. And they genuinely like, they thought I was being domestically abused. And I was like, well, well I am, but by my child. And it's really, really hard. It's definitely made things more difficult and it's definitely had a negative impact on my health.

My son doesn't sleep due to his problems. Even with medication, he really struggles to sleep and my conditions are so closely linked to fatigue. The neuromuscular disease especially. When I don't get sleep, my symptoms are horrendous. So I tremor, I fall, my balance is really off. I just struggle, my body struggles and it's like, no. ⁓

I can have episodes where I'm going about my day and all of a sudden I just crash, I hit a wall, I actually can't continue. I've had occasions where people have had to physically come and carry me, bring a wheelchair, take me home. It just hits me from nowhere. I've got six trap nerves currently in my body. So don't know if any of our listeners have ever had a trap nerve, but it's not particularly pleasant. Imagine six of them. So very painful.

I tremor, I drop things, I struggle to do repetitive movements. Prior to diagnosis, I actually had an ascetics clinic that I ran. And one of the things I noticed was I was tremoring when I was holding the needle. That's not great. When you're trying to give someone Botox and you're like, hi, shaking their face with a needle. And I had to give all of that up. Like when I say this completely changed my life.

It completely changed my life. All my goals, all my dreams, I had to change everything I had worked so hard to create. I lost it all overnight. I was no longer ensured to inject. Everything changed for me. It affects, like I can wake up in the morning and be paralysed. If I've slept funny, if I've not put a pillow in between my legs, if I've rested a leg on a leg, if my son's come and got into bed and laid on my arm.

I can genuinely lose function in that limb for months at a time. And that does happen. We've even had occasions where I left the key in the door and I couldn't move in the morning and no one could get to me. And thank goodness I regained function within about four hours, but I was just stuck. Like they were gonna have to bang down the door. But that can happen at any point. And in the hospital at the beginning of the year,

I fell asleep on the toilet. I went in with a blocked feeding tube and I could walk when I went in. I fell asleep on the toilet seat and it cut into my sciatic nerves and bilaterally I went paralysed down both legs. It took three months for me to be able to move my legs again. Just from sitting in my toilet seat and falling asleep, like that's what this is like. So I have to carry cushions everywhere I go. I have to plan constantly.

You just don't know what you're getting. I never know how I'm going to be. My pain is, it's so hit and miss. Like things like the cold make it a lot worse. So this time of year is a struggle for me. I find heat's really helpful. It's just so hard. It impacts everything. I drop everything. I'm very weak. So a of my trap nerves are in my upper limbs. My phone is shattered. It's got like a proper man builder case on it, like an industrial phone case.

It's just chipped and broken and everything gets dropped. Even so with work, I had to get like dragon software to be able to type because I had to speak to type because repetitive movements cause tremors and symptoms will happen really quickly. Trying to curl my hair, I can't actually hold my arm up. to use one arm to hold the other arm up. And I'm constantly getting burnt where I'm tremoring and whacking my face with my tongs or it just impacts every bit of my day.

The children, especially my son, I need a lot of help with. Their dad has had to, he comes out at 3 a.m. I ring him, I'm like, mate, I can't move. And he will come at 3 a.m. He knows if he doesn't, it's social services. Like it's literally a case of that. It's like, you're gonna have to tag team it with me or they're going into care because I can't keep them safe at times. It's really tough.

Naman Julka-Anderson (14:01)
Thank you for sharing the reality, Sarah. I think it's really important for people to understand that. So obviously on the surface, you don't always get to see what's going on behind the scenes, especially looking after children and finances in life and things like that. How have you managed from the financial side, but also I suppose from the work element of trying to keep going, like how nice or accommodating have they been to help keep you in work?

Sarah Phillips (14:22)
So I was so lucky. When I got symptoms, I realised this was bad. I literally, came on on my lunch break. I just got drop foot and I fell. And I thought, quarter of crania, surgical emergency, quick, ED. And I went in and they did the MRI and they ruled that out. And I just went to the consultant. I went, do not sugar coat this. I said, we're looking at the nasty stuff here, aren't we? And he went, yes. And I went, Tell me what investigations I need.

And he did. And while under investigation, I was sensible. I remortgaged my house while I still had pay slips with me not being off sick. I took equity out of the house while remortgaging because I thought, right, we're going to have to set up something on the side here to keep you going. Thank goodness something had told me to take critical illness cover out two years prior.

just randomly something to guys, take Critical Illness Cover. Take it now. Do it. Stop this podcast. Pause it. Honestly, best advice I can ever give you, the younger you get it, the better. I paid something like £7 a month and it paid out. So, I took out all that. So, basically, I had this security. My work were wonderful. At the time, I had my ascetics clinic on the side,

and I also worked writing medical reports for PIP. I did PIP assessments advising the DWP on disability. And they were, the company I worked for at the time were wonderful. They did everything they could to keep me in employment and to support me. They gave me so many adaptations. Honestly, they were absolutely lush.

They sent me little love parcels every week, keeping me encouraged the whole time through this despite multiple admissions and we're talking a month to six weeks at a time. I don't know how many surgeries I've had a stock counting at about 10. But honestly, they have been so supportive. Then we TUPEd to a new company fairly recently, they lost the contract and sadly, the new company started

not been so great. There's been issues. A lot of their disabled employees actually faced a lot of challenges. And I've actually just recently decided to leave because of ethical reasons. I just thought, you've got a disability contract and you are not supporting your disabled employees. And I just thought, nope, I'm not going to do this anymore. But what I had done in the background is I've actually set up several little businesses of my own.

So the one thing where these conditions absolutely changed my life, they also gave me a lot. And this is why I want to spread this message of hope to people because yes, My life was just ripped into shreds overnight. I lost everything that I had worked so hard for. My whole vision for my future was taken away from me in a heartbeat. But once I got over the shock of that,

I started making a plan and I realised that I could not change what was thrown at me, but my power laid in how I responded to it. And I started to make a new plan and I started to change that vision for the future. And when I found out I would have to have a PEG-J feeding tube in my stomach, I was devastated. But I turned that into a modeling career,

I got signed with one of the UK's leading agencies and my PEG and I have strutted the catwalk. And I've gone on, I think we're talking a moment a bit more about this, but I got involved with creating an adaptive line of clothing through Nicky Newman and that's with Asda George. So I've basically taken it and I've turned it into something amazing. So I've also set up several companies of my own all off the bat,

of personal struggles I had as a result of living with disability. So they tried to put me in a nursing home after one of my admissions when my mobility was very poor. I couldn't go home to my children. I have some adaptations to my property. I have a stairlift. I'm awaiting a wet room, but it wasn't safe for me at the time. And literally at 31 years old, their solution was go into a nursing home.

So I've started an adaptive housing company and we're going to be creating all adaptive accessible homes and helping social housing providers by getting those numbers down off those wait lists and getting these homes to the people who need them. So all the issues that I face, clothing was one, housing's another.

There's more coming and in terms of my son's needs for the future too. He's always going to need care. We're going to be creating homes for adults with learning dis, like shared homes. We're going to be creating little coffee shops to attach to those homes to give them the opportunity to work and bring the community into these environments so that they can mix with the community. There's so much I'm doing and I created because of my experience.

That's how I've managed to keep afloat financially. You know, accepting my circumstances and thinking, now what? Taking control, learning where I had control, learning where my power lay, and making the best of what I had been dealt. And this is what I want to get across to people. You need to take that time to process and grieve. And trust me when I say, I did not do that in a dignified way. I had a full on breakdown.

I did not want to be alive, genuinely. I knew what my fate looked like because I used to manage a nursing home that specialised in neurological conditions and I knew the horrors that potentially await my future. And I was focusing on that and I just wanted to give up and not have to endure it all. But after having the time to process that and feel what I needed to feel,

and allowing myself to feel what I needed to feel, I decided I didn't want to stay in that place anymore and I slowly pulled myself out a bit and I found so much light and sunshine and joy. And I can honestly tell you, as much as these diseases have taken from me, they have given me so much and my life is happier, more meaningful, more full.

It's just so much better than it ever was before because of how I've managed to turn that situation into something positive. And you can literally do that with whatever hand you're dealt. It's all a state of your mind and how you choose to think. And if you can change your thoughts and how you choose to handle that situation, you can literally rewrite your future any way you want to.

Jo McNamara Rad Chat Host (21:01)
I absolutely know there'll be people listening to this podcast episode who are just absolutely dumbfounded by what you've had to go through and how it affects your day-to-day life but the fact that you have managed to turn it into a positive when it could have been so easy to have kind of resigned yourself to what you envisaged as your future

and I would imagine you know as someone who works in oncology absolutely patients listening will be going through that and in the depths of despair kind of thinking about the fact that they have I don't know a stage four cancer diagnosis and not necessarily realising that you know their life isn't over with that diagnosis and that you can still do things and contribute and I certainly know from kind of working with people through social media

lots of kind cancer influencers would say that they have found meaning in their diagnosis, that they never anticipated and I think that kind of resonates with what you've said Sarah from your experiences. What advice would you give to anyone who's kind of listening thinking well Sarah sounds absolutely amazing and she's doing amazing things but I'm currently in those depths of despair.

How do you turn it around? What did you do? What was the trigger that made you think, right, I'm not doing this anymore. I'm not going to kind of forego my future and I am going to change things.

Sarah Phillips (22:24)
you start really small. You start with trying to find the sunshine each day and it's one moment. So you start by trying to find one moment of joy in your day and that's how it begins. And at first you do have to look for that because you you really are in the pits and you've just got to really search for that one moment that you're grateful for in that day that gave you a bit of joy. It could be somebody smiling at you in the street. It could be something really simple.

And then what you find each day when you do that and you make a point of actually like highlighting what that moment was, you find as the days go on, you get more and more of those moments. You don't have to look for them anymore. They're there. You see them everywhere, glimmers, bits of sunshine, and you see them wherever you go. And it is that simple. You start off there and you hang on to those moments. And as the days go on, they're everywhere and you're no longer searching. They're just there,

and you start to find that joy. And it's like, what you're dealing with doesn't go away. It's like a grief. It's something hanging over you. So you've got like this big black dot, but you gradually start to paint color around that dot. So imagine a big black dot and then get like yellow and you do a yellow circle around the dot and then you get some red.

and then some green and some blue and you suddenly start to build this life and this world around that big black dot and that becomes your new world and your new life and it all starts from just finding one moment of joy in your day, one moment of sunshine of hope and it slowly starts to build and build and build and you're not going to have a good day all day every day. You do need to allow yourself to feel there is such a thing as toxic positivity.

And you find this a lot online. Now, the social media platforms are phenomenal. is the best way, sorry, it's the worst way to meet the best people having a diagnosis like this. But you will meet the most amazing people because they will have the same frame of mind as you, because they've also gone through immense traumas. They've had to deal with the same kind of struggles and it does change you,

and it does change the way you think, but you find other people who've gone through that and you will bond and that will become your support. Like one person's story becomes someone else's survival guide. And when you find other people who've done that and been able to do it, it's so inspiring. And this is why I post online, but I'm very honest and I show the bad too, because I need to show the realness to show people that it's not all rainbows. And I think sometimes we put too higher expectations on ourselves, especially for

people who are surviving, there is such a thing as like survival's guilt. Like after a diagnosis of cancer or any kind of significant condition, there is no going back to who you were before that. And people think you get that all clear and it all ends. It's not the case at all. You have ongoing symptoms you have to live with for the rest of your life as a result of the brutal treatments you've been through. You have so much trauma as a result of what you went through. And

you do have to continue to live with all of those things. So it's the same whether you're incurable or whether you've survived. It is a completely new life following that. And it's just as hard and it's important that you allow yourself to feel what you need to feel in any time when you're struggling. You just don't stay there too long and you keep moving forward. And this is what

what I found. I do show the bad days, I show the struggles and I show a lot of glamour. If you just saw some moments in my life, you'd think there's nothing wrong with her, blah, blah. So I'll show you that. I'll show me you're going out and then I'll be like, right, just off to stick this little straw in my bladder so I can have a wee, off we go. And that's me all over. I show you all of that and I'm like, my son, even tonight, my son's just stripped naked so I've just shoved one of them little towel things over him because that's how we're surviving tonight. We're just doing what we need to do to survive.

I show the realness to just show other people what it is like. I've just had two days at the end of last week where I was in bed, poorly. And I showed that and I was like, yeah, nothing got done today. And I'll show the carnage in my house and it's like, do you know what? It can wait. And I do try to show reality because I think it can be quite toxic when you're just following people and they're like, I'm so grateful to be alive. I have to be happy every day. No, you don't. No, you don't. You can have days where you go, do you know what? I've been through a lot and this sucks,

and it's not fair and it's not okay. And you can absolutely moan and like survivor's guilt as well where, you know, I've got friends around me right now who, you know, may have only been given a matter of weeks to live and it is absolutely hideous. I'm so, I feel like I shouldn't moan about a single thing because of what they're going through. But what you've got to remember, other people's experience and their situation does not invalidate yours.

And another thing I found when I got really poorly, my friends were like, they didn't want to speak to me about stuff because they didn't want to moan to me because of how tough my life was. And I was just like, my problems do not make yours any less and yours matter too. So if you are listening and you're not poorly yourself, but you've got a friend who is, please still go to them with your problems. We love to hear your drama. It distracts us from our own.

Please don't try and isolate, don't, I mean, it's not trying to isolate us, but don't feel like you can't just be normal because we're going through something like we crave normality, we crave those little things. So I think it's bearing all of that in mind. Like this, it's such a massive thing and there's so much to cover when talking about living with and coping with incurable illness. But these are probably like my

things like that I've mentioned as a kind of overview of it all. But yeah, just be kind to yourself. Like you're dealing with a lot and even like, especially if you really are in those difficult moments, I want to get this out there too, because it's a really valid thing to say and everyone's afraid to say things like this, but I'm not. There were times when I was sat in that hospital bed and I absolutely resented my family, my children,

my friends and I'll tell you why, I was suffering. I was in agony and I was not good and I just wanted to stop. I was done. I was done, done, done. I didn't want to fight anymore and I thought, you selfish lot. Here I am having to suffer so that you don't have to grieve. And honestly, I felt like that and I want to get that out there because no one else talks about that.

And if you do feel like that, I just want you to know I did too. And then I got a really great appointment with pain management and we got on top of everything a bit more. So palliative care, guys, that's another thing I want to say. Palliative care. So palliative care doesn't mean you're dying. Palliative care are banging. They are the absolute experts in all things long-term conditions, in all things pain management. If you have an incurable condition, get referred to palliative care really early on,

because they are so specialist and they're amazing. They will help you with your whole journey. It doesn't mean you're dying. Like I was so reluctant to start pain meds because I thought it was giving up. I thought it was progression. I thought it was like accepting that I was moving on to the next stage. It's not. It was the difference between me being able to strut my stuff down the street and carry on with my day and being absolutely bedridden in a heap crying.

Like, don't be scared of the word palliative care. Like, it's not a scary thing. They're amazing. Like, it helps us. And having that input is such a game changer. So that's like another point I want to make. Please don't be afraid of these things. It doesn't mean it's the end. It's symptom management, guys. And it literally gives you your freedom. It gives you your quality of life.

Naman Julka-Anderson (30:05)
Thank you Sarah, I think there's a lot of people who would take a lot of those points away if not all of them. I think just very quickly to say my wife and I at the end of the day we always ask each other what's the best thing that happened today even if we've had a completely shit day we have to do it and even if yeah it's usually something to do with our son now.

I know you talked about strutting your stuff Sarah can you tell us about the accessible clothing range?

Sarah Phillips (30:32)
Yes, so many of you guys may have heard of an incredible woman called Nicky Newman. She had breast cancer and before she passed away, it was her absolute dream to create a line of adaptive clothing. And she popped it out on social media and loads of people offered, lots of brands got in touch and she chose to go with Asda.

And she asked people, what do you need this clothing to do? What do you want? And this is where myself and a gorgeous lady called Natalie Woodward came in to play. Natalie had stage four bowel cancer. She had a horrendous procedure, which I think she had five spinal nerves removed. She had half her pelvis extracted. She had to have a vagina removed, all kinds of things. She has to do self-cafeterise. She has a stoma.

All sorts going on. And obviously I've got my feeding tube and we worked with Nicky and with ASDA to design and create this range. And it's basically accessible clothing. You can, if you're in a wheelchair, you can literally dress, sat in your wheelchair, you do not need to wait there. It was the difference between me being able to wash and dress myself in hospital and needing carers and nurses to do it for me.

When you're bedbound, you can dress yourself. It's got easy access to leg bags if you've got a leg bag with a catheter, super pubic catheter, stoma bags, any kind of pump, insulin pumps and things. It's bloat friendly. It's got lots of zips. It's got all sorts of secret pockety bits. It's got expandable waistbands in the trousers. The tops have feeding tube access. It's got port and line access for

infusions and cancer treatment. So, one of the key things, when you're having an infusion through like any kind of portal line, that infusion can't be stopped. So, if you've got normal cannula and you want to put a jumper on, your nurse can pause it, they can detach you, reattach you. That isn't the case when you've got like a midline or something like that. You can't do that because it's an aseptic procedure. The entire infusion would have to go away and have

and you'd have to have another one. So you can be sat for like eight hours at a time plus without being able to put on a jumper properly, without being able to change. This clothing allows you to put things on and off. It's got full on access. It's also MRI and scan friendly. It's all plastic zips, very high quality. That took us a long time and held us back. We had to outsource them to get the quality there and make sure it was fit for purpose,

but those zips can go in an MRI machine so you can wear normal clothes. They look like normal clothes, they're comfortable. So when you're going for treatment and scans, you do not have to expose your backside in a gown. You do not have to freeze in an MRI machine because they're cold. You can be in comfy clothes and it's perfectly safe. And when you're sat having treatment, you've got all that access. Again, when you're just in hospital for OBs, we've got pajamas that are Velcro down the front.

And they're great if you've got a loved one in a nursing home as well or anyone with dementia, anyone who needs help dressing. Those pajamas are a game changer. I personally did the user trials on those and they did the boob test. I rolled around all over and nothing fell out. So, they're absolutely amazing. The whole range is great. If you check it out on Asda George, it's actually there's a sale on at the moment with them as well.

But the other thing with it is affordable. So there were a few reasons why Nicky chose Asda. One, they're massive. We wanted this accessible to everyone. Two, you can go on Asda and buy everything. They do home, they do food, they do clothing. We wanted it to be easy for people who are poorly and don't have the energy to be like they could find everything they need in one place. Three, the price. They were able to do this range extremely cheap. Now,

The only other alternatives at the time when we started were about £79 an item. And while they're lovely and it's great other brands, that is a luxury end of the market. And the way I explain it to people, you've got Harrods and you've got Primark. You know, some people can afford to shop at Harrods and that's great. And there's a market for that. But some people, especially those going through cancer treatment and

in hospital regularly for chronic conditions. They're living off disability payments and sick pay, if they're lucky to get sick pay. And they cannot afford Harrods' budget and they need these items. They are not a luxury, they are a necessity. So that's what we were aiming for. We were trying to make them as fit for purpose for everybody, but as cheap as possible while still being comfortable and looking good. So

that and we have achieved that. We've had some great feedback that is going to be taken on board and also this is a range that has only just started. The first range was aimed at hospital treatment. It was aimed at comfort and things like that when you're actually having treatment. We are going to expand this. It's going to contain other items that are more everyday, more out and about, maybe occasion wear,

you know, it doesn't end there. This is just the beginning. it's all very exciting, but people with disabilities, like we see you and we care, as do care. They want to help you. So if people do get in touch, like comment on things, let us know, because we are taking on board all the feedback. And if you have tried the clothing and you've got any feedback, let us know, because we will listen and we will keep improving it. The whole point of it was to help people.

side.

Jo McNamara Rad Chat Host (36:17)
Amazing Sarah and I would just add as well that healthcare professionals need to go and have a look at this range as well because I personally am someone who absolutely detests having to see patients in gowns, hospital gowns. It's really isolating, no one wants to sit in a corridor in a gown when you could potentially be in an item of clothing that maintains your modesty and dignity whilst you're already going through a really difficult time. So I would stress

that healthcare professionals check out the range as well and it's amazing the work that Alex and the team are continuing to do to kind of really take this forward and ensure that it is really accessible and yeah I just as soon as I saw the range I was like yes why has this not happened before.

Why is it taking this long but it's incredible and it's great to see you part of that whole campaign Sarah and real co-production so it's not a supermarket like taking it on and just going right okay we know what we're doing now we'll run with it it's really keeping the patients and those who need this range to co-produce what it is that they go on to do sounds amazing.

Sarah Phillips (37:26)
Absolutely.

Asda were amazing. They really listened and they really met the assignment. They really cared and it was so great to get to work with them. Alex has been phenomenal. I just adore Alex anyway. He's a wonderful human, but keeping Nicky's vision and dream going like that. He just knew the importance of this for her, for all of us. Yeah, he's an amazing human.

I was so, so honored and lucky to be able to work with all of these guys and be a part of this. When I first started with my tube, I was on 20 hours of treatment a day. I had a four hour break and my pump would, it was like pump occluded all the time, beep, beep, beep, constant beeping, like my clothes got in the way, like there was just nothing. And then the neuro disease, let's say when my bladder first went, I love this pair of skinny jeans team, I do.

And when you then your legs go, know, skinny jeans do not accommodate a bag of urine. They just don't. And I had nothing. I was like leggings and skinny jeans. And I was like, my goodness, I actually have no clothes. I had to go out and buy, well, I couldn't, but I had to get someone to go out and buy me clothing to accommodate my new accessory, bag of wee walking around. And so all of this was like taken into account with the range and it's...

It is just amazing. It's so exciting that brands are listening now and accommodating this. And I've shown my local hospital. I'm quite fortunate because of the nature of my condition. I am on technically hospital treatment at home. So, I have a community team and I get my own nurses. I don't have to go to the doctors. Like, if I've got an issue, I just ring Angie and off she pops.

I get my nurses to the house, it's great. And I've got dieticians come and see me and I've shown everybody the range and they love it. And I've actually been advised as well, we've got a new chief exec at our hospital and they're like, you've got to get in touch and like, he'll love this. And I'm going to be pushing to go in and show everybody and see if we can get some little leaflets and get some packs together so that when patients are newly diagnosed, they get this information and they get a little leaflet thing,

explaining about the range. You know when in a lot of trusts when you're pregnant you get like the maternity package with all the information, something similar like that. I'm pushing for that now. I want this to be included in when patients have been given leaflets about cancer treatment, diagnosis like those treatments and resources. I want this to be included in with that because I think it's really important.

Again, we did not make any profit from this. This isn't anything for financial gain. So I don't feel bad saying, go buy it, go buy it. It was all about, this was Nicky all over as well. I've got to stress this, Nicky and Alex all over. It was all about helping people from day one. That's what it's about. And that's why I will shout it from the rooftops, go get it, go get it. Because it's so affordable. It's absolutely great. It is fit for purpose. I found it brilliant.

Lots of people have tried it out and sent posts and they've found it game changing. And I don't know if other patients can relate to this, but I've spent long enough in hospital to know I am treated differently when I'm in clothes as to when I'm in a gown genuinely. And I know that's a really sad thing to say, but it is the honest truth. When I'm in a gown and I look a little bit unkempt, I'm spoken to like I'm a moron. Like honestly.

The way I'm treated, there's just not the level of respect and dignity there. There's really not, and it is really sad it shouldn't be like that. But unfortunately, from my personal experience, that has been the case. And I find when I'm wearing my own clothes and I get dressed every day, I'm just treated with a little bit more dignity and respect. So it is something I do try and do when I'm in hospital. I will try and get dressed every day.

Naman Julka-Anderson (41:23)
So we've come to the end of the episode. think we could hear you speak all night long. I've enjoyed it so, so much. You've given loads of good tips throughout. We always like to end with top tips, I wonder if, linking back to the social media side, is there any top tips for people who don't understand disability that you might give so they can view you in a better light?

Sarah Phillips (41:41)
Yes. So speaking from personal experience and also as a qualified disability assessor, please don't just assume. Don't just assume because I assess many, many conditions, right? In my time as a disability assessor, I can have the same condition, but those patients will score totally differently. Disability impacts everybody differently.

And a huge, huge factor in that is actually somebody's state of mind, genuinely, I've noticed this. But just because your cousin's got that condition, it doesn't mean Tom down the street is gonna be the Everybody's so, different and try not to judge, like learn from your friend or from the person with a disability how it impacts them. Disability really does impact everybody so, so differently. It's really important not to have that preconception.

You can have an idea of, that's quite a serious condition. They're likely to be quite disabled, but you just don't know. Take time to actually listen and learn about the individual and their condition before you comment or, you know, before, yeah, definitely online before you would say anything because it really does impact people differently. And also, like anything, when people do get sick, you have no idea.

How they're going to respond to that and how it's going to impact them. It's really important to let that person navigate that and just support them in it. There's no right way. People's lives get just turned upside down and there's no right way to handle that. So just try and support people as best as you can without judging and just keeping that really open-mindedness that it's a massive thing, and we all cope differently and disability really does impact us all very uniquely.

Naman Julka-Anderson (43:22)
Amazing. Thank you so much for coming on, Sarah. It's been a fantastic episode.

Sarah Phillips (43:26)
Thank you for having me.

Naman Julka-Anderson (43:27)
Thank you all for listening to Rad Chat with me, Naman Julka-Anderson and Jo McNamara. So our next guest to feature will be Dr. Saahil Mehta as part of our Living Within Beyond Cancer series talking about the Bloom43 app and device through Plexaa. Thanks for listening and take care.

Jo McNamara Rad Chat Host (43:42)
So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate.

Naman Julka-Anderson (43:01)
Stay up to date with the latest radiotherapy and oncology advancements by liking and following us on social media and hitting subscribe wherever you get your podcasts.

Jo McNamara Rad Chat Host (43:11)
Please do join our supportive community designed by professionals who understand the unique challenges of working within radiotherapy and oncology. Follow us across all of our social media channels and make sure to check out our website www.radchat.co.uk. Together we're actively working to improve our profession and make a lasting positive impact on cancer care.

Naman Julka-Anderson (43:34)
It goes without saying that we can't achieve this alone. It takes all of us working together to create real change. That's why we value every voice and every contribution. We ask that you listen and learn and spread the word, share your story with us and connect with us.

Jo McNamara Rad Chat Host (43:49)
And if you have liked this content, why not buy us a coffee? Go to our website and drop us some love. Thank you all for listening and take care.