Love, care and hard work: life as an unpaid carer

Key:

JV: Jo Vigor

KL:      Karen Lewis

YL:       Yvette Lewis

DF:      Deborah Fenney

JV:            Hello and welcome to the King's Fund Podcast where we explore the big issues and ideas in health and care.  I am Jo Vigor, Assistant Director of Leadership and Organisational Development and your host for this episode.  Today we're exploring the lived experience of unpaid carers, the role they play in the health and care system and our society more broadly.  You'll hear from two wonderful people Karen and Yvette Lewis as they share their story with us and later in the episode I speak to Deborah Fenney, a fellow in our policy department who has been working on an upcoming report, Caring in a Complex World, Perspectives From Unpaid Carers and the Organisations That Support Them.  Karen and Yvette, thank you so much for taking the time to speak with me today.  Just to start us off, would you mind just introducing yourselves and Karen saying a little bit about your experience of providing care to Yvette and Yvette your experience of receiving care?

KL:        Well I've been caring for Yvette since we met really in 2004, yes, well since we got together. 

YL:        Well not since. 

KL:        Not since really because it was only when we started living together that I took on the role of a carer really.  I'd never had that role before so it was quite an interesting transition because I was working for a little while at the time, I was in a full time job so I was out from nine until five or six and then coming home.  I'd come home at lunchtime and things like that to make sure that Yvette had got something to eat and drink and that she had got her medication and stuff, but then through circumstances where I was working eventually decided I'd give up work and become a full-time carer.  So I did that in 2008 and then I was diagnosed with breast cancer –

YL:        Cancer.

KL:        - in 2009 or 10?

YL:        Somewhere like that, yes.

KL:        Somewhere like that, so Yvette became my carer effectively while I was going through all of that treatment and that was a bit of an odd one really, wasn't it, because we … well we were caring for one another really and we've carried on doing that really all the time, haven't we?

YL:        Yes. 

KL:        I mean it works well.  We work well together.  I mean I look after all of the house things like the washing and the cooking and the shopping and the finances because Yvette's mental health can very much up and down and dealing with things like that you don't really like -

YL:        No.

KL:        - to do.  So I tend to … and I'm a very organised person anyway so I do tend to take a bit of control in some areas.  So I look after all of that really as well as just taking care of Yvette and helping her on a daily basis with bathing and medication and getting you up and out of bed and stuff like that really and feeding you and making sure you've got drinks and anything.

YL:        Not physically feeding me.

KL:        Not physically feeding you, no, but making sure that she's got food.  I hasten to add she was a lot smaller when I met her but I fed her up (laughter). 

JV:            I'm loving the humour.  I'm loving the humour. 

YL:        What can I say?  I was a lonely disabled person struggling, fighting the system because I was just having brick walls because I was in an age gap that wouldn't get help, a grey area.  So it was nice to have Karen.  When we met she was a loving and caring person and we got on and she just looked after me basically, yes, makes my life a lot better. 

JV:            The way that you've just portrayed each other there is this fantastic heartwarming partnership with a huge amount of love and a huge amount of humanity going through that.  I mean just … I've just had a bit of an emotional reaction to that actually as you were talking.

KL:        Thank you.

JV:            It's lovely to be talking to you both and to hear what's been going on for you.  I mean from your points of view, what is a typical day like?  What does it actually feel like to be a carer and then, Yvette, somebody who is cared for, on that … what does that day to day look like and feel like?

YL:        Well it could start at 2 o'clock in the morning, when I start coming out of sleep my pain kicks in.  So you usually help me get up out of bed.  Well actually first thing I have to do is wake Karen up (laughter).  I have a sleep apnoea machine so Karen helps to put that to one side for me and put it in my cleaning machine, then she helps me out of bed, then she gets me in my loungewear and then I hurry to the loo and as I'm doing that she's waiting just to make sure I'm okay and then she'll follow me downstairs and she'll …

KL:        Down your stairlift.

YL:        Yes, because I'm on a stairlift.

JV:            Right, okay.

YL:        She helps me over to my recliner chair and then you make me a hot drink and make sure I've got a can and says to me, "Are you all right?"  I go, "Yes," so she'll either read next to me in her recliner chair and fall asleep or she might turn round when she realises that I'm comfortable that she can go back to bed until my PA turns up at seven o'clock to give me my breakfast and help me with my tablets.

JV:            For the listener, what's a PA?  Is that a personal assistant?

YL:        Yes.

KL:        Yes.

YL:        It's a personal assistant.

KL:        And then it's whatever the day holds really.  It depends on how Yvette is, how she feels as to whether or not we actually do anything planned.  We say we can't plan because we have to take every day as it comes because we never know how much pain Yvette is going to be in, whether or not she will feel like going out or not.

YL:        The seasons.

KL:        The seasons affect her condition because she's got degenerative disc disease in her back so mobility is compromised and she has got arthritis in her hips and her knees, so moving around is quite restrictive particularly when it's wet and cold and windy, you might just sit and watch telly or you might doze or you'd be on your laptop gaming.  It depends … because again it depends on your pain, doesn't it?

YL:        Yes, yes.  I always like to do something to distract me because if I'm not distracted then I just feel like the pain gets a bit unbearable, but we do do things, it's not … if it's really bad for me.  If it isn't we do like to go out in the car and stuff and go out bird watching or things like that.

JV:            You've painted a really vivid picture for our listeners around what your lives are like on a day to day basis.  What does it feel like that you have … that you live your life on that day to day basis?  What does that actually feel like?  Could you give us some insight into that?

KL:        It can be very frustrating -

YL:        For you.

KL:        - for me because I can't plan.  I'm a planner to the nth degree as Yvette will tell you, so I find it difficult not being able to plan too far ahead and having to change plans at the last minute if we've thought we'll go and do this tomorrow and then Yvette gets up and she can't do it.  It also means that there are quite a lot of things I do do in some respects on my own because Yvette is not well enough to come with me.  Initially when I first stopped work that I found difficult because I'd been so used to being busy for such a long time and then having all this time on my hands because there were only certain times that in some respects I was needed to assist and I suppose in some respects I didn't actually see myself as a carer because I was just looking after the woman I love, so I wasn't … in that sense I wasn't a 'carer' and then I got … the social worker gave me Carers Leeds' details and I started going to their support groups and talking to other carers and listening to other carers and hearing their stories and eventually started volunteering there and I got involved in supporting LGBTQ carers and Pride and things like that, representing Carers Leeds.

JV:            That sounds like quite a big commitment as well given what else has been going on for you personally and with Yvette as well.

KL:        Yes.  I mean I wouldn't have been able to do it … I mean this was after I had had my treatment and I was feeling well again but I wouldn't have been able to do that if we hadn't have had the PA in place because I had the peace of the mind that there would be somebody taking care of Yvette if I wasn't around.  It enabled me really to almost find myself again because it gave me a different challenge and a different purpose which I felt at the time I needed and I think that was possibly after the diagnosis because I think you always take a bit of a deep breath and you evaluate where you are in your life.  I mean this, we're talking nearly eleven years ago now so I'm touch wood.

YL:        Yes (multiple speakers 00:10:25).

JV:            It's been a while, yes, yes, (s.l. it's been a while 00:10:27).

KL:        Out of the woods let's hope.  So yes, so that was how I dealt with it in some respects and Yvette was brilliant because she let me do it, she wasn't saying, "Well no, you've got to be with me 24 hours a day," she said, "No, if you want to go and do it, do what you need to do."

JV:            Karen, do you describe yourself as a carer?  You mentioned there or indicated there that you didn't describe yourself as a carer, what does that word mean to yourselves, that word carer? 

YL:        Do you want the … our interpretation (laughter) which is it's basically all carers are wonderful people because they actually do the job that nobody else does and they're there for you.  The government should be more better towards carers and -

KL:        Should recognise us.

YL:        - should recognise what carers actually do because it's more than a full-time job.  A full-time job is x amount of hours, caring is all the time.  It doesn't stop. 

KL:        Never ends really because although I do get that respite from the physical side of it because the PA assists, there's that mental support and the emotional support is constant particularly with somebody like Yvette who has mental health and anxiety issues.

JV:            So when people refer to carers as heroes or angels, what's your reaction to that?

YL:        I think they are.  You give up your life, your life, to look after somebody. 

KL:        There's never a break.  So yes, I think in answer to your question both heroes and angels.  We all tend to do it with such -

JV:            Yes, 24/7.

KL:        - grace and without question and nothing seems to be too much and I get very frustrated with the recognition that carers don't receive because I think if we didn't do what we did from the goodness of our own hearts in some respect we'd probably bankrupt the government to be honest in that respect because they'd then have to find money to pay people to care for everybody and we all know at the moment what that situation is like in recruiting paid carers.

JV:            In your experience what support have you been able to access as an unpaid carer and you've talked there about the financial side and the benefit side, but is there anything else that's been going on and again you've talked about Leeds Carers, but is there things out there that carers can tap into or look out for?

KL:        Certainly we're finding the local carers … unpaid carers support network is very important because the amount of support they can give you from just offering a support group where you can go and get things off your chest, or you can ask for other people's experiences or knowledge, being able to direct you to the right people to talk to if you need to get equipment organised for the person you care for, how to get in touch with OTs and social services and all that sort of thing.

YL:        What you're entitled to, yes.

KL:        What you're entitled to, that sort of thing.  Certainly that's most important I think and most places, I think everywhere in the country now has some sort of charity or organisation set up to support family carers and unpaid carers.  So I was very lucky that they are so good here and that they supported me through my treatment and then afterwards.

JV:            Leeds Carers is in the charity space because -

KL:        Yes.

JV:            - my next question is really about how easy is it to access services such as the NHS and social care which are much more in that public sector?  Oh I can see your faces.  I can see what the reaction is in your faces there.

YL:        Well let us put it this way, this day and age once upon a time you used to have access to a resource centre, each disabled person in their own right could go to a resource centre if they wanted to to get them out and about and encourage them to have a bit of a life really and of course all that's been knocked on the head, closed down and stuff.  So all the information that carers would have got and the support all got closed from that.  So then we have other voluntary sectors pick the pieces up.  If it wasn't for them and it's still if it wasn't for them, it would be hard because if you look for anything these days the first thing they usually tell you to do is look for a voluntary organisation.

KL:        Yes, over the years Yvette has needed mental health support and we've gone through the system and every time we go into the system it's changed from the last time we've gone through the system and we always know that there's going to be a considerable timescale before she'll get any help simply because mental health is so pushed with people needing help.  I mean we lost mum in January and Yvette's been struggling and needs some help, so we looked into bereavement counselling and we were told Cruse and that was … was it like a twelve … a minimum of twelve week waiting list before you could even talk to anybody and to be honest in the end I've just … all we've done is we've made the decision that she will see a private psychotherapist to get the help that she needs and I've said, "I don't care about the money, we'll find the money somehow, what is important is your health," but it's difficult when you've been put in that position when … I mean yes we are very lucky we do have the NHS and dear god we'd all be lost without them, but they're struggling which means that we're struggling.  We could have said, "Okay well we'll wait," you might have to wait a year, you did the last time you needed help with mental health stuff.

YL:        Yes, a year and a half. 

KL:        You had to wait a year and a half before you got what you needed.

JV:            Yes, and it's not … when you need it you need it, don't you?  You need to be able to access it.

YL:        Yes.

KL:        Well that's the thing in mental health, you're in a crisis, you don't need to be told, "Well we'll see you in twelve months." 

YL:        When you go to the hospital and you say, "I'm feeling suicidal," or, "I self-harmed," you'll get assessed and then you have to wait a year and a half to actually get the treatment, I says well you don't go in hospital with a wound cut or -

KL:        Or a broken leg.

YL:        - or a broken leg and they send you away after the assessment and say, "Come back in twelve months and we'll fix it for you," because that's basically what happens with mental health.  They just … they put you on hold hoping and praying in that time that you don't do anything silly because you're waiting for the help.

JV:            We'll return to the podcast in a moment.  Are you interested in working with communities to assess need and provide health and care services?  At our two day virtual conference Community Led Approaches to Health and Wellbeing, we'll be discussing the impact of person centred approaches to health and wellbeing and exploring what further action can be taken.  We hope to see you there.  Book your place via the link in the show notes for this episode.  Do you actually feel that your experience is understood and that you're heard when you go through some of these services and some of these experiences?

KL:        If it's the voluntary sector yes.  

YL:        It is hard for them, they've got to put the budgets where they can and stuff and it doesn't help that they don't get the money that they should get and we all understand that, but it would just be nice just to have … well carers get more money, more recognised because they do a hell of a lot.  I mean they've been … like Karen said, they've been there for both of us, not just for Karen but also for me.

KL:        I mean one of the problems that we've repeatedly come up against with particularly with reoccurring mental health is that every time you go back into the system you start at the bottom again.  So you have to go through the, "We'll put you into counselling," "Well no counselling doesn't work."  We had this the last time that Yvette needed some help.  We knew that she needed to see a psychotherapist and it was only … we had, "Oh well you were assessed.  No you don't fall within this, you need to be assessed here," and we weren't -

YL:        Being listened to.

KL:        - being listened to until I got … I got fed up really and I wrote a very long very in-depth letter to the mental health team and within about three weeks you had an assessment and within about six months after that … I mean this had been going on for twelve months I think, you were seeing psychotherapist regularly for 16 or so sessions. 

YL:        Yes. 

KL:        But those 16 sessions had to deal with so much that the pressure …

YL:        It's pick one out.

KL:        Yes, the pressure …

YL:        Seriously.  Pick it out you've got twelve weeks or whatever and then that we've got to say goodbye, but what happens if it's not helped or I need more?   Well then you have to go back in the system. 

KL:        You have to refer yourself again and then we'll start again at … and that's the other benefit of why we decided that we would do it privately because it means that Yvette doesn't have to say, "Well I've only got 16 sessions."  If I need to be doing this for a year she needs to be doing it for a year. 

JV:            If from the conversation today there's one thing you'd want people to think about from listening to your experiences, what would that be?  Can I start with you Karen then yourself Yvette?  It's a big question.

KL:        Well that's a good question.  From my point of view, you have to ask, don't expect things to happen for you –

YL:        And chase.

KL:        - ask and chase and don't let people not come back to you because I think a lot of times departments think, oh … you get lost or people think she's making a mountain out of a molehill we'll leave her a bit and let her calm down, but in actual fact you're actually fighting for what you need so don't ever give up in some respects and think that you won't get anywhere because I think at the end of day if you keep asking and you keep chasing you will eventually get what you need.  There's a lot of people out there who don't know what they need in some respects and that was one of the questions that used to bug me if somebody rang Carers Leeds, and I did speak to them about this, because their support advice line would say, "Well what do you need?" "Well I don't know because I don't know what's out there."  So again it's people need to know what is out there and how to access services and how to get the help.  So it must be the availability and the promotion of the support for carers and for the people they care for.

JV:            That's a really strong message Karen.  I think we need to get you and Yvette with a placard and start a social movement, I can see it happening there, we could all get together, I mean it's just such, such important work.  Yvette have you got something you want to say to that point as well?  What's the one thing you'd want listeners to go away from the conversation today?

YL:        Well as a disabled person never give up, people are carers and people do like to care and don't take people at disadvantage and when you get a carer be nice and civilised to them, it doesn't matter if they do it for free or if they get paid for it, at the end of the day they've got feelings.  You need to respect them and sometimes carers might not be respected like they should be or been taken for granted and they pay a massive role in keeping costs down and stuff.

JV:            And society going.

YL:        Yes.

KL:        Yes, exactly.

JV:            Thank you for sharing your story today.  The insights have been fantastic and I know our listeners will get a huge amount from this, but what a beautiful love story between you.  I mean it really is for all of what you've been through and all of the experiences you shared it's just fantastic to see the partnership working in a way that it does and thank you for sharing.  Thank you.

YL:        Thank you.

JV:            It was really great to get that first person unpaid carer's perspective from Karen and Yvette.  Thanks so much again to them.  For the last few minutes of this episode we'll be bringing in Deborah Fenney, a King's Fund consultant who has recently overseen in-depth research into issues facing unpaid carers.  There's a link to Deborah's report in the episode show notes and here she is now.  Deborah, welcome to the podcast.

DF:         Thanks Jo, I'm really pleased to be here. 

JV:            We've just heard from Karen and Yvette a very emotional story explaining their experiences and there's so much to reflect from their story, but from your perspective, what did you make of it and what stood out for you?

DF:         I mean it was really powerful, wasn't it?  It was great to hear them talking in their own words about what the caring relationship means for them.  Loads stood out I think, but maybe the one to talk about here is how the interview really highlighted some of the diversity amongst carers.  So both who carers are and the kinds of things they do.  The 2021 census tells us there are 4.7 billion carers in the UK but caring is really complex and Karen and Yvette's story really highlighted two people caring for each other at different times.  It's not just a one way relationship always and I think also that the range of support provided so the practical things like help to get dressed and support with mobilisation but also that emotional support and the deep knowledge that you have that means that you can tell when a person's needs are changing.  It really illustrates the huge contribution carers can make.  So it's estimated that unpaid carers contribute the equivalent of four million paid carer workers to the social care system and we've said in some of our work that without them the system would collapse.

JV:            And I'm struck by how the wider health and social care challenges have an impact on unpaid carers and cared for people.  So there were some examples being drawn out by Karen and Yvette for example the long wait list for mental health services and social care workforce shortages.  Do you have any reflection on this from the research that you've undertaken? 

DF:         Yes, absolutely, this was that came through really strongly in our research.  So we were talking to unpaid carers, we were talking to commissioners and providers of services in four local authorities in different places in England and we were asking carers in particular what kinds of support are available locally and what they find most useful.  The resounding answer that they told us was about getting good health and social care support for the person that they care for, but then we also heard how the appointment delays and cancellations they're experiencing were often adding to their responsibilities, adding to the sense of stress and commissioners and providers of support also talked about the impact of cuts to services and insecure funding on what they are able to deliver.  It's probably worth saying we came across a lot of examples where local authorities were commissioning their local carers organisations to provide that support that was available for unpaid carers, but as Karen and Yvette's experience shows that doesn't always mean better access.  The point Karen and Yvette made about recruiting social care workers was particularly interesting.  This was something that came through in our research.  We had one parent caring for an adult son who said they'd had 143 different care workers come into their house over two years and 50 of those just once and that lack of continuity, the number of new people to meet, but also to train in that person's particular needs I think that really highlights the impact of these things.

JV:            It's quite a massive … that one example there really brings it home to how complex this is and how difficult it must be in a caring or cared for position where you're having so many people just cycle through your life.  I just wanted to move us on then to really thinking about the role of the charity sector, Karen and Yvette spoke very highlight about the role that the charity sector plays within their lives.  In the report itself do we touch on that?  Were many people talking about the impact of the charity sector versus the impact of statutory services?

DF:         So we recruited … in our report we recruited the carers that we spoke to through the local voluntary sector organisations.  So I think perhaps unsurprisingly they often had really good things to say, but they also said them really sincerely like … and it's not just the unpaid carers sector, I think in many contexts we hear how the voluntary and charity sector is a real source of support for people, and we also heard how local authorities are working with their local voluntary carers organisations both to hear from carers and also to develop services that work for local people, the key thing there is it's not always easy.  I mean there's a history of … and in many cases ongoing competition for funding between different voluntary organisations and that can obviously be a barrier to that closer working.  One thing that we did hear from commissioners of support was compared to other social care commissioners they have fewer relationships with providers which means they have more time to develop those relationships and they said both that's really useful but also quite necessary in the context of the amount of funding they have to deal with.  So they talked about commissioning through influence, building up those relationships with their local providers, the voluntary sector, to help build their picture of the overall support offer.  And we think there's also a key role here for integrated care systems.  So it's early days, but in two of our sites that kind of wider relationship across health and care in the voluntary organisations were really important to supporting unpaid carers locally.

JV:            Yes, so really complex picture there and I think you've found that through the research that you've all been doing at the King's Fund.  During the episode Karen raised an interesting point around including carers and people accessing care in the design of services.  She's talked about putting the voice of carers and cared for in the centre to help provide value.  Did we find any examples in our research where this was being done well? 

DF:         Yes, such an important point, isn't it?  We did hear a couple of examples where this was being done well and particularly where carers were directly involved in some of the wider organisational planning, so carers partnerships across different organisations in a system that had direct carer representation on them.  Carers who had been involved in that kind of work were quite positive about it, and in one area the work they were doing as part of that local carers partnership was enabling them to embed a carers' agenda more widely locally, but I think we also did hear experiences where it didn't go so well and maybe where carers were represented by an organisation but not directly and didn't always feel their voices were heard.  So I think one of our messages from the report is that it's really important to do that coproduction with carers but also to make sure it's being done meaningfully, making sure that people really are getting their voices heard and that they are hearing back what's happened from being listened to. 

JV:            Thank you Deborah, thank you.  And I think that's the message for design of most public services as well, isn't it, making sure that the voice of the citizen and the patient are in the centre?  So have you got any reflections overall before we sign off for today?

DF:         I think the one thing I wanted to say was I'm really pleased that this has been a podcast that's really centred Karen and Yvette's story and people's lived experiences of caring and being cared for.  This was one of the guiding principles of our research project, we had a patient and public involvement group and helped design some of our research tools and helped us to sense check the findings, we had people with direct and indirect experiences of caring as part of the project team and making sure that we spoke to local unpaid carers in the local areas that we looked at not just the professionals but commissioning and providing services and I think it's also really important to say that some of those people working professionally in this sector are also carers themselves, so there's a huge range of views and experiences that are really vital to hear when you're doing this kind of work and I hope that our report really reflects that diversity of experiences and helps inform improvements in support for carers.

JV:            Thank you Deborah.  That's all we've got time for today, thank you so much to Karen and Yvette Lewis and to Deborah Fenney for their contributions to this episode.  For more on our work in this area look out for our upcoming report Caring in a Complex World, Perspectives from Unpaid Carers and the Organisations That Support Them.  You can find the show notes for this episode and all our other previous episodes at www.kingsfund.org.uk/kfpodcast and you can get in touch with us via Twitter, our account is @thekingsfund.  The producer for this episode was Emma Sheffield and it has been edited by Bespoken Media.  Don't forget to subscribe, share, rate and review this episode wherever you get your podcasts and of course thanks for listening we hope you can join us next time.