Carers Voices

In this episode of Care in Conversation, we'll hear from husband and wife carers Jenny and Patrick Matten and patient safety specialist, Bethan Simpson who balances caring for her young daughter and working full time. 

Together, they share their experiences of caring, juggling work and life, and the importance of recognising and supporting carers. 

Transcript

SPEAKER_03 0:29

Welcome to EPIT's Caring Conversation Podcast. This episode is all going to be about carers. It's in recognition of Carers Week. And the theme for the Carers Week this year has been building carer-friendly communities. I'm Stuart, I'm your host today, and really looking forward to this discussion. I'm joined by Jenny and Patrick Matton, who we're going to be speaking to in a minute, and also Bethan. So I hope you enjoy listening to this episode. We're going to be giving you a bit of an insight into what we're doing as an organization, covering topics such as why conversations about care as matters, what it really means to be a carer as well, and the impact caring can have on everyday life. So Jenny and Pat, thank you so much for joining me today. Really looking forward to this discussion. And I thought actually it would be really good just to understand a little bit about who you are and your involvement with ePut as well.

SPEAKER_02 1:27

Hi everybody, I'm Patrick Matton. Jenny and I are husband and wife, and we are both volunteers or LEAs, as they are called, within ePut. I'm also a full-time carer and have been instrumental in getting on board with the Carers Network Staff Carers Network and other carer-related aspects.

SPEAKER_01 1:52

Yeah, so um I'm Jenny. I have quite a bit of involvement within EPUT, um within like the Time to Care Initiative, Trauma Informed Care, and of course the staff carers network. And uh within anything that I do within EPUT I have my own uh lived experience hat that I wear, but also um lived experience of being a young carer right the way through to my late teens, early twenties.

SPEAKER_03 2:25

Lovely, thank you both. And I think that lived experience might be a really good place for us to begin. Uh so I'd if you'd be happy to, it'd be really good just to understand um your personal experiences uh as part of this conversation and and maybe just giving us a bit of an insight around what being a carer can look like, um, because there there are many um uh kind of definitions of what a carer could be, um and sometimes misconceptions as well. So it'd be really good to hear from both of you around uh your personal experiences.

SPEAKER_02 3:00

Yeah, um to be fair, I almost fell into my caring role, um, in so much that I'd known Jenny for many years before we got married, and I knew a certain amount about her background. But really, if I'm honest, it was only after the birth of our second child that things for Jenny started to go downhill and we were obviously facing um a severe mental health crisis. Um and it's really at that point when everything started to step into place and um the processes all started to action that I really di dawned on me that I was adopting a caring role. Um and then obviously subsequent conversations that I had with healthcare professionals and so on and so forth just um emphasised the fact that that was my role. Um we were just coming out of COVID, yeah, coming into COVID at that time.

SPEAKER_01 4:00

Coming into COVID.

SPEAKER_02 4:01

Coming into COVID, so my work had pretty much dried up. So I that was in my um interpretation that was nature's way of telling me it was time to take retirement. So I did. Um and I was able therefore to step straight into my full-time carers role as well as uh dad of our two young children.

SPEAKER_01 4:20

Much to my relief.

SPEAKER_02 4:22

Yes, well at the time of course Jane was not in a great place, um and as much as she wanted to be involved in bringing the children up and and all the things that involved, especially with a baby and a toddler, um, she just generally speaking wasn't in the right place to do that. So it fell on me to be in that role.

SPEAKER_01 4:43

Yeah, so and then from from my perspective, um my experience of being a carer started well, from the moment I was born really. Um both of my parents suffered long term with mental health difficulties. Um my mum um spent a good 80% of my life as an inpatient in various wards across Essex. Um, so that would be sort of like a a constant um visiting, getting updates on her care plans, doctors' appointments, attending. And even then when she came out and she had a few years um living in a house and with a you know, with someone and having us I just remember a lot of the time it was, Mum, have you taken your medication today? And just sort of keeping a general check up on her to make sure that she was okay. But in the meantime, I spent a large part of my life living with my dad, and he had a lot of um difficulties from severe depression, fears, phobias, um, for example, of of thick snow and heavy storms, rain, to the point that we would end up sitting in a car park outside Basilden Hospital just to give him the reassurance. And sometimes that'd be all night, you know, until until morning. He he had sort of quite bad um eating disorder, anorexia, and everything was difficult with him. It there was no time but anything was plain sailing. And I just remember certainly from I suppose about four years old I had this severe fear that if I wasn't with him that something would something bad would happen to him. And that's when I I found that I was in that caring role. Um I get him to eat stuff, ensuring he was safe, and that went right the way through till you know my twenties and at no point did I think, oh well I'm his carer, because it had always been put across, well, it's your dad. Of course you would do that for your dad. You know, he's a member of your family, what else would you do? So it was something that didn't really occur to me until I suppose I was about 18, 19, and I'd been struggling with my own mental health difficulties and um someone um as as sort of a result of speaking to the the GP they said, Well, have you had a carers assessment? And I thought, Well why would I have one of those? And it was only at that point that they they started to say, Well, yeah, you're a carer which thankfully they did because I ended up having to give up my my previous job um in order to care for my dad when when we had sort of some struggles. At that point I was like, Well yes, I've I've had to give up all all sort of my life plan in order to care for him, and that was when it kind of hit home really.

SPEAKER_03 8:25

Well, thank you so much for sharing both of you, because there's some really personal things there, and I can imagine the emotional impacts that had, um, because there's a lot of responsibility to take on when you're caring for someone. And I think what's interesting around both of your experiences you almost found yourself slipping into that role and and maybe not recognising it to begin with. I think that's something we've spoken about recently, as we've we've been working really closely together, haven't we, around support we can offer within the organization for many staff members. We recognise that your experience will be um may there may be similarities with other people that work in our organization. So I don't know if you'd be happy just to expand on the work we've been doing recently around supporting staff given your experience and the establishment of a new staff network as well?

SPEAKER_02 9:20

Yeah, um we certainly uh back about two years ago um I was exploring um what was needed in the way of care of support from an ePUT perspective. And at that time we opened up a a couple of I think it was three carers network meetings where we literally just threw the doors and windows open and said, come on in, sit down, have a chat and we did the whole thing online and on that very first meeting that we called we had just shy of a hundred people at one point turn up um to a teams meeting and which kind of blew me away because in up at that to that point I'd never been in anything quite as well supported as that. One of the things that struck me in that was that the vast majority of the people attending that meeting were employed by EPUT in various roles, some clinical, uh some administrative, but just all across EPUT. There was probably something in the region of seventy, maybe seventy-five percent of the attendees were all EPUT employees, and they were all saying the same thing. We need support. We're we're struggling to get a work life caring balance. And of course, as you know, we came away from those meetings and came to you um with your colleagues, had various conversations linked up with other bodies, and um formulated over a period of time a a support network which initially of course we referred to as the carers lounge, but quickly outgrew that to the point now where we launched the first of our full staff carers networks and that's a long-term supported and sponsored project to get support f in whatever form it looks like out to members of staff who uh alongside their work role have fulfilled a caring obligation as well. Maybe in them I'm sure in their personal lives.

SPEAKER_03 11:24

Thank you, Patrick. Yeah, I just reflecting on that actually, I'm sure you both agree, but that launch was really exciting, and I think that we're really looking forward to seeing the network itself grow in numbers and and reach. But when we think around this this year's theme for Carers Week around building carer-friendly communities, I think that really speaks to what we're trying to do at EPER in supporting staff and connecting people because and whilst being a carer isn't a protected characteristic, there can be specific impacts to people based on their race or their gender or their age. So I think it's a really good step the organisation's taking. Um, just before we close out, then is there anything that any reflections on um you know the the network itself that we've established or what you're looking forward to see moving forward?

SPEAKER_01 12:14

I think that it's really positive that we're not only inviting carers to come along, but we're also inviting um like ward managers and anyone who really wants to support staff who are in a caring role at home because it it's great to have that little space, like a safe space within the network, but if we can start establishing those networks outside of the the carers network, then our staff are going to be more supported day to day as well. Um so I think that's that's kind of what I reflect on as being a real positive step forward personally.

SPEAKER_02 13:00

I also think to say that the one of the things that came to me really impacted me was the people that attended that first the launch of the Carers Network came from a place which can be quite lonely. You you often find yourself so immersed in your caring role that everything else around you just goes into i into sort of fu into fuzz. You don't you're not aware of anything around you and in that situation to be able to sit down with people who were like-minded. And as Jenny just said, not everybody at that meeting was fulfilling necessarily a caring role. Um, but everybody was there because they understood it and they wanted to be able to be more proactive with their team members in order to be able to help and support those those sort of people with a caring responsibility in their employment role.

SPEAKER_03 13:55

Thank you both. And yeah, it's a really good point. I think it's those shared experiences, isn't it? And we're we're actually gonna be joined shortly by uh Bethon, who attended the Carers Lounge in its original format and the last network session as well. So um thank you both for sharing your experience, um, and we're gonna move on to uh have a quick discussion with Bethan now as well.

SPEAKER_01 14:16

Thank you for having us.

SPEAKER_03 14:21

So we're now joined by Bethan. Um Bethan, thank you so much for joining us today. Were you all here really just to kind of give us a bit of an insight into uh your experience uh as someone who uh cares for a member of your family? And it should be really good just to have a bit of insight, if that's okay, on how that is and how you balance it with work.

SPEAKER_00 14:43

So it's a challenge, so there's probably no point beating around any bushes. It's very difficult to be a full-time working mum and also have the additional struggles of a child with quite profound disabilities. So I've had both experiences, negative and positive, more recently, very positive experiences in the workplace. So for me, it's about reasonable adjustments not only for my child but also for me being a woman in the workplace. So I know that I have to meet strict routines for my child, but I also have to be strict with my work schedule. So I have to have lots of reasonable adjustments with my manager that allows me to dip in and out of work at different things. I have to attend lots of hospital appointments, I have to work around all of those things. So for me, it's my time management, it's the support I get from my line manager and my director because the whole team sort of need to be aware of those things. I can be called out very quickly for something that's changing for my child, so I have to be responsive. I had lots of difficulties when I was working more clinically because I always had to have my phone on me, and I think for people working clinically, it can be a little bit more of a challenge. But again, I do think reasonable adjustments and flexible working are achievable in clinical roles, providing that there's an awareness and a want to be aware about flexible working and reasonable adjustments and the Equality and Diversity Act. I'm quite passionate about making it work. Um, I see that there's a gap, not just in the NHS, but I think nationally, in women being able to access work when they're mothers and having the additional aspects of the care and responsibility, especially when there's medical or sort of mental health aspects to it. So I'm sort of a bit stubborn, I suppose, I'll be honest with you. I am quite keen to prove a point that I can make my job work as well as my home life and my care and responsibilities, and so far, so great, I've been able to do that, and I think they the work see that, they see the outputs, they see the abilities that people can do, and I think it's a good example. But for me, yeah, lots of lots of rest and lots of understanding on my own well-being. So I need to understand what I need and be able to speak about what I need, and to be able to speak to people about that is really integral because otherwise it I probably say it would all come crashing down. Yeah, I think it's a juggle, but with the right support around you, that is very easy to achieve. I'll be honest with you, that's my my opinion on it. I do think it's easy to achieve with the right support.

SPEAKER_03 17:29

Thank you, and something being stubborn by the way can be a good trait sometimes. But um the uh something that sticks out as you were just speaking there was around the relationship and communication with your manager and just background awareness as well. Yeah. So it'll be good just to understand, you know, like how or any reflections you've got on how you um communicate that with with managers, with other team members around, the kind of balance you've had to strike, because it sounds like something that, and correct me if I'm wrong, be about to work out.

SPEAKER_00 18:01

Yeah, 100%. So I'm quite an open person, if people haven't already guessed that. I tend to say everything that I'm feeling and everything that's going on for me. So I think for me it's being open and transparent and honest, and I've maintained that honesty and that openness since my daughter was born, and I returned to work and the realistic challenges that I'm going to face. I've always had that with EPUT. So whilst I have met challenges with that, in the role that I'm in now, I have a manager that is really willing to understand my daughter. I'll be honest with you, that they do understand, they know everything about her, everything they need to know about her, and I don't have an issue sharing that because I think if I'm going to access those or I need to access those things, you kind of have to have that openness with them about the reality of what it is, and it's not always pretty, it's not always bright and fluffy. So actually, when they see you go through those challenges, they then get that raw lived experience of being around somebody that's providing care and responsibilities. Um, so I quite clued up, I suppose, on my rights as a carer. I do access things like carers first and things outside of this, so I know my rights, and I've got my support network around that, and that's then allowed me to go to EPUT and say, like, I know that I need this, can you help me with that? So, my line manager, I have to say, with regards definitely with regards to my ability to do what I do, has been profoundly impactful in me being able to maintain access to work, and I will say there's a level of of empathy from her with regards to that and and understanding. I don't feel like I ever have to worry about saying, well, my daughter's not gone to school very well today, I'm gonna be late. It's there's a there's a deeper level of understanding, which I think if you've got that, you're you're sort of on to a really, really positive experience in the workplace. My mum reminds me daily of how lucky I am to have the support that I have. Honestly, it's rubbed into me like a tattoo at this point. But and I think the wider organisation, because I have spoken quite openly about my daughter, and you know, they understand what I'm doing and what I have to do, so they they they get it, and I think when you get it, and when we are we're more open-minded to the roles of carers, especially unpaid carers, parent carers, we then sort of have a different perspective on what that means to somebody, and actually, why shouldn't a woman who's a who's a mother to a child with a disability not be able to access work?

SPEAKER_03 20:51

I completely agree, and thank you. And it's interesting because we spoke earlier with uh Jenny and Pat around um their experiences and um that awareness of of what's involved in caring actually can apply to the person who is the person providing the care too. You can find yourself going into that, finding yourself in that position. So just a final question then is there any any advice you'd maybe give for somebody who is managing a staff member or as a colleague who has caregiving responsibilities because many people have uh only limited amount of experience of caregiving. Is there anything you'd any advice you give?

SPEAKER_00 21:30

Yeah, I think for in a line management role, I think it's about absolutely having an open and honest conversation and being accepting of that. We accept a lot of other things that fall within protected characteristics, and I sometimes think we lose sight of the impact of being a carer or a parent carer and what that means to them because you see them at work doing a seven to seven or a nine to five, but their role then continues. For the next 12, 16, 18 hours, and then they come back to work and do the same thing again. And I think that in 2026, we definitely live in a world where reasonable adjustments and flexible working and understanding how that can be beneficial to your service will maintain your retention rather than requiring consistent recruitment of staff. More often than not, carers will leave work because they're not supported to be a carer and also do their role despite being high performers. And for colleagues out there that are in that space, I do think you have to be open, honest, and transparent and speak and be your authentic self about your situation because you're never going to get support or understanding if you don't have that openness because people then don't see the depth of what you're coping with.

SPEAKER_03 22:49

Thank you so much. And Beth and stay with us because we're going to bring back Jenny and Patrick now. We're going to close this episode up and we're going to talk a little bit more about the Staff Carers Network. So, Patrick and Jenny, thanks for rejoining us. We've had a really good discussion today talking about uh carers and sharing some experiences between ourselves and some of the things happening within our organisation. Let's just talk again about um the staff carers network and support we're looking to improve within our organisation. Uh just be interested, um Pat and Jenny, how do you hope these networks will support carers and make a difference moving forward?

SPEAKER_02 23:27

I think the most important factor with this uh is that it makes carers realise that they're not on their own, um, that they're not isolated and that there is a supporting group out there that does genuinely care for them as carers. Um this is something which we hear time and time again, that people g find themselves isolated. And even when they're at work, um during their breaks and things like that, when many of their colleagues may be sitting down talking about general stuff that goes on in life, they're on the phone to their loved one, checking on appointments, making sure that people have taken their necessary medication. And it is isolating. So even in a busy environment, you can feel very, very alone. And the network just brings those like-minded people together to put everybody in in the right place, and they're sitting there s sharing time and thoughts with people with similar experiences. So it makes them not just feel part of a team and supported, but it also makes them feel recognized. Um and that's really important that we have somewhere safe for them to come and talk and share their thoughts, their feelings, their problems possibly, so that we can give them the support that they richly deserve.

SPEAKER_01 24:50

Yeah, and I think on that it's it's gonna be great to have that space for people to to share their own experiences, um, not only to be heard and like feel validated, but to be able to support each other, so sharing what worked for them and what didn't work so well, um, being able to sort of recommend different resources, maybe different routes, avenues to go down in order to get support. And I think also the value of having board managers, uh matrons possibly coming along that can further support their staff. They also have a bit of a an understanding not only from what is available but also the reality of trying to juggle uh care and responsibilities at home, your own well being and your well-being whilst you're at work. Because there's so many places out there, and I and I speak from experience where you're expected to walk through that front door to go to work and you see like a little red light where record, gotta be happy, everything's gotta be great, and in reality that's that just doesn't happen. Yes, alright, you can put a smile on your face, but it's still wearing you down inside, and so if you've got that support from your your colleagues, from your managers, then that goes such a long way.

SPEAKER_00 26:33

I'll keep it very short and sweet, but for me, definitely staff side, it's definitely about that awareness that you're not alone and having access to a space where you're sort of judgment-free, again, sharing those like-minded views. And you know, when we do wide, if we can ever open it up to wider staff side elements where that people can see actually what we're doing, a bit similar to one of the talks that we did previously where we shared our actual story, and people really then get that insight, and it's just about recognition. And I think the biggest thing for me is that staff don't feel alone in this because, as you say, you're coming in to care, but caring doesn't stop for people like me, you, and everybody else providing those roles.

SPEAKER_03 27:18

Yeah, no, thank you guys, and I think it'd be really good to see this network grow and we'll have different staff members who may be new to caregiving, and there may be some who have um previous experience of caring for someone as well, and that that sharing of experience and was mentioned earlier around resources and advice and support that's available will be really useful. Um so, guys, thank you so much. I think that's a great episode. I just encourage anybody listening, um, if you're a carer yourself, to maybe consider looking at some of the resources that were maybe mentioned. Um, if you're an ePut staff member, then uh take a look at the uh our intranet pages for our staff carers network uh and we'll be back soon with another episode.