The hidden value of unpaid carers: a conversation with Fatima Khan-Shah

Key:

• HM:     Helen McKenna

• FKS:     Fatima Khan-Shah

HM:       Hello and welcome to The Kings Fund podcast, where we talk about the big issues and ideas in health and care.  I’m Helen McKenna, Senior Fellow here at the Fund and your host for this episode.  Before we get into the conversation, just a quick reminder that if you enjoy our show, please do subscribe, rate, and review us wherever you get your podcasts.  It helps others to find us, and it helps us to improve the show.

I’m massively excited about the guest we have joining us for this episode, a woman who was, just a couple of weeks ago, named in the Health Service Journals, 50 most influential Black, Asian and minority ethnic people in health and that incredible woman is Fatima Khan-Shah who is programme director for unpaid carers and the personalised care programme for West Yorkshire and Harrogate integrated care system.

Before I say anything else, Fatima, a huge welcome to The Kings Fund podcast, it’s so fantastic to have you with us today.

FKS:       Thanks Helen, true bucket list moment for me too.

HM:       So, Fatima, I’ve got so much to ask you, I’m hoping we can cover your leadership journey, as well as some of the big issues I know you’re passionate about, such as the role of unpaid carers and the importance of self-compassion and leadership.  But first, there’s only place we can start this conversation and that is with the question that everyone in health and care is asking, do you know what that question is, Fatima?  It’s what is behind your Twitter handle, @shutcake?

FKS:       So, this is the embodiment of you create a Twitter handle without thinking of the consequences of your future career.  So, shutcake comes from the phrase, shut your cake hole, which is shut your mouth and when I was at university in Sheffield, I was like, oh let’s have a catchy Twitter handle that is really cool, at the time I thought it was cool, not really fully appreciating that I might have a career where I might want to change the Twitter handle.  It then got to the point where I was using it for work, didn’t know how to change it and then actually realised, oh this is something that stays in people’s heads because they’re thinking, oh shutcake, what does that mean but also, they remember to tweet me.  So, I’ve kept it and owned it but yes, take note people, when designing or choosing a Twitter handle, think of the consequences of what you choose.

HM:       I love it, shut your cake hole, massive respect for keeping it as well.  I wanted to get you to tell us a bit about you and the work that you do?

FKS:       So, I started my journey in higher education oddly and championing the needs of people from different backgrounds who were working and studying in the university that I studied at.  It was because I needed a placement, I didn’t want to go far, this seemed like a really interesting opportunity, although I had no aspiration for politics and someone said, oh why don’t you go into the student’s union and give that a go, it will be a good experience for you.  So, I went in thinking, this is not going to work, somehow won the election to be the quality diversity officer, I think it was, at Sheffield Hallam and really got exposed into the forums of influence within higher education, nationally, regionally and it just really whetted my appetite.

My experience of working with the executive in the student’s union but also the university led me to working for them when I graduated.  So, I literally finished uni on the Friday and ended up working for them on the Monday, it was really surreal.  Then I met my husband and got married, we had an arranged marriage and it moved into this new world of married life and met this incredible woman who was my mother-in-law and discovered very early on that she was very unwell.  So, she was living with dementia, and it was a struggle, they say, don’t they that the most triggering and stressful experiences of your life are getting married, moving house, changing city, and starting a new job and having a child.

I did all of them in one year because why would you do things by halves, Helen, why would you but it took me to a dark place, it was a period of my life where I lost my identity, I lost my self-belief, I lost me because all my energy was focused on this really vulnerable person who needed me and sadly the health and care system wasn’t recognising what I was trying to do, wasn’t recognising or delivering the best possible outcomes for this really incredibly vulnerable person and I just felt like I was on the peripheries of the system screaming, absolutely at the top of my lungs and no-one was hearing me.

I remember coming to the conclusion after a couple of interventions that I had two choices, I could walk away from situation and completely absolve myself of any responsibility or I could take control of the situation and try and channel what was happening to me into positivity.  I got into public and carer involvement, the mistake, if it was a mistake was that I joined it in the mindset of someone who was really angry and frustrated and I discovered really soon that being an angry, shouty woman didn’t make me very popular.

I met a man called Rory Deighton who happened to be the chief exec of the local health watch in Kirklees and he said to me, you know what, I hear your story and I want to help what you’re trying to do, we don’t have many people from your background or heritage contributing to these conversations and your lived experience could really help us, would you get involved and I’m like, would I?  It just changed my life and it really opened up my eyes to the fact that (1) you really need to be able to understand the strategic priorities in health and care to challenge them properly.

I was just focusing on my bit of the world but also the importance of a business case and constructive challenge.  So, if I was going to give anyone a tip, if you’re a public carer champion, right now, Fatima’s top tip is, challenge constructively.  The myth that I used to have was that people were in this dark room somewhere trying to ruin my life, they were coming up with new ways to make life difficult for me and they were just people trying to do the right thing but sadly have not considered or thought of what it was like to be in my shoes and once I had bought those issues to their attention, the thing that they were struggling with was, well what’s the solution.

I quickly understood that actually to be somebody who was going to influence these people I needed to offer them both problems and solutions and that really changed my thinking.  I think from then I started to go full pelt.

HM:       In terms of the lived experience and patient involvement, I know that you’re a big champion of that and so I wondered, to what extent do you bring that into your work now and how hard do you try to upend the tables to make sure that that dynamic is properly addressed?

FKS:       So, there are ways that I try and do it practically within the programmes that I lead within the ICS that I have influence on and say, okay so where is the lived experience in this, where is the representation but what I also challenge is you can’t expect one person to represent a whole load of different communities.  So, I don’t profess to be a representative of anyone, I call myself a champion or an advocate or a conduit because no-one speaks for me, girl.  I don’t expect anybody else to be speaking for others, so there is something about creating the infrastructures and the forums for dialogue and representation in forums is one way of doing that.

Other elements are how you influence national conversations, so we do stuff in collaboration with The Kinds Fund, obviously but with the NHS assembly, really pushing and amplifying the lived experience of others on agendas where it can influence positive change.  Then the final thing and it’s very much about the stuff that I lead on at the moment, which is the lived experience of carers, particularly during this time, all for people from ethnic minorities, is about developing capability.

So, it’s not enough to have someone in the room, you’ve got to support them to contribute, and I remember being in forums of influence as a non-executive, often being the youngest and the woman from an ethnic minority in that room and going, what am I doing here because there was no-one else that looked or sounded like me.  So, one of the key things that I always keep trying to champion at the moment is developing capability in people that have got lived experience because it’s not enough to give them a forum to speak, it’s about supporting their development to influence which is a different conversation.

So, in answer to your question, I think there’s a whole variety of things that I try and do in my work, obviously giving them the platforms, the ability to influence and our governance structures.  But it’s also about utilising the collective lived experience to influence wider agendas too.

HM:       So, I wanted to ask you about the work that you do on the role of unpaid carers because I know a lot of your work centres on that, and you’ve been leading on this for West Yorkshire and Harrogate Health and Care Partnership, and your work recently won a national award and then of course you’ve also been a carer yourself.  I saw a figure from the 2020 Carer’s UK Caring Behind Closed Doors report that suggests there are, I think before the pandemic, up to 9.1 million unpaid carers across the UK which is a huge figure.

Many of those were providing care without any formal support, as somebody without caring responsibilities, I just wondered, are you able to tell us a little bit about the reality or some of the realities that lie behind those figures?

FKS:       We estimate in West Yorkshire that we’ve got around about 325,000 out of our 2.7 million population that have got caring responsibilities.  The recent statistics show nationally that one in three of our NHS workforce balance work and caring.  So, they are people like me who have a day job and are looking after somebody who wouldn’t be able to manage without their support.  I think there’s a fundamental issue that we need to acknowledge, Helen, which is that people don’t call themselves carers, they don’t acknowledge that are carers because caring isn’t something that defines us, it’s something that we do.

I’m a wife, mother, I try and be a friend sometimes and also the daughter of somebody and I’m just trying to do the right thing by keeping the person that I care for safe and well and that requires sometimes me to operate with not much sleep.  That requires me to navigate the health and care system and advocate for that person on their behalf, it sometimes requires me to do some moving and handling and personal care.  That sometimes requires me to work flexibly because the caring role requires me to do that.

I suppose what I’m trying to say is, caring is something that can happen to all of us, it’s a social leveller, it doesn’t look at your ethnicity, it doesn’t look at your socioeconomic background, we’ve all got people in our life that at some point may need an intervention and care and support from people like us.  The issue is that the system doesn’t always fully appreciate the consequences of what that caring does to us as carers but also the opportunities by which they can support people with caring responsibilities.

So, I started this journey really pushing hard to be recognised as a partner in care for my mother-in-law and I knew a lot about her care needs, I knew what she was like on a good and a bad day, I managed her medicines for her, I coordinated her care, I was with her 24/7 and my family were making sacrifices as a consequence of that.  We have no privacy because we had people in and out of our house all the time, we were up all night, trying to keep this person safe and I remember sharing with you all, I think at The Kings Fund, I know I’ve certainly shared this story with you about the fact that I had a young daughter at the time who lived very close to a park that she could see through her window and I remember her absolutely in tears, not being able to understand why mummy couldn’t take her to this park she could see through her window.

The reason why I couldn’t do that was because I couldn’t take her grandmother with us because she wasn’t well enough to leave the house.  They’re just some of the realities that carers face all the time and I’m not saying that one caring situation is better or worse than the other, it’s all different but it’s all really difficult.  I think one of the things that we can do, as a system, is create mechanisms by which we involve and support carers in a way that is meaningful to enable them to focus on what matters, which is caring.

The complexness of our system, the lack of involvement when it comes to delivering care, the bureaucracy and the barriers and the lack of support all makes caring harder and if we removed all those barriers, life would be a lot easier for our carers, we wouldn’t have resolved all of it but it would have resolved a lot and I was talking to a group of clinicians who are carers, oddly last night because they are very much keen to amplify their lived experience as working carers in their day jobs and feel that they could better supported.  My challenge to them was, as carers and as networks, we don’t talk enough about the cold, hard cash.

So, as carers, we save the equivalent of the NHS budget, before obviously the investment we’ve seen recently and if carers were unable to care, where is that care going to come from and where is the cost of that care going to come from.  In addition to that, if as we know, carers become unwell, as a consequence of them not being supported to care, so I’ve got a physical impairment because of my caring responsibilities which requires me to have support.  But if I was unable to care and the person, I care for was unable to be looked after, we’re both coming to the health and care system, so where are we going to find the money to look after those people.

I’ve started to talk about caring in those terms, that was the whole rationale behind setting up the programme.  In addition to that, if you go to the one in three within our NHS, that balance working and caring responsibilities, if you think about it from a clinical perspective and the investment we’ve made in those individuals and yet acknowledge that actually 50% of them are thinking of leaving, this is Carers UK stats because they feel that they’re not adequately supported within the workforce or 80% of them have not had a conversation with their manager about their caring responsibilities, we lose those individuals, that’s a lot of investment that we’ve lost that we will then have to replace.

So, one of the key attributes about supporting carers that I’ve always tried to advocate for is (1) is it socially and morally right and makes business sense to support our carers and (2) actually when we’re talking about supporting our carers, not just the touchy-feely stuff about supporting them, it’s about recognising that they are part of our health and care system, that they have got skills and expertise in their own right, that we need to embrace and utilise those skills because they’re crying out for us to hear them.  But also think creatively about how we support them in the future.

So, I used to think my career was over when I became a carer, I’m like I had this trajectory, stopped to be a carer because it was the right thing for me and my family and I just thought, that’s it, there’s nothing left for me, but actually caring is the basis for the career I have now because I owned it and I embraced it and people saw the potential.  If we as a country, as a system, said well actually we recognise the skillset that carers develop, the caring, the empathy, the kindness, as well as the medicines management, coordination skills, facilitation, all of that, transferable into a number of vocations in health and care, come and work for us.

Then if you think of our young carers and we’ve got carers as young as five in this country, providing care and support, what are we saying to those young people who lose their educational attainment or don’t fulfil their potential because they’re doing the right thing by a loved one but have got all these skills that they’ve developed as carers.  Well, we want them to come and work for us surely, are we saying that, I think we could say it louder and it's about thinking strategically about an agenda that is seen on the periphery as nice to have with a strategic but business focus of actually, if this is harnessed correctly, it could support our system, fulfil our strategic objectives.

I think that’s what’s made our programme a success, but it’s all come from the centre of lived experience with strategic knowledge into action.  I think the key thing for why we are credible as a programme is because we say we’re going to do something, and we make it happen, but we keep carers at the centre of everything we do and we’re credible because we hear, and we act on what they say.

HM:       Thanks Fatima and I mean I totally agree with you about the point that these carers are part of the health and care system, they are an integral part of it and obviously some of them are in the NHS, in the official NHS workforce, I think you said one in three but also, those who aren’t being paid by the system, are in essence a part of that workforce and how important it is to recognise that and recognise the important contribution they make and yet, when you look at, thinking about social care and the people who work as carers, officially in social care, they are some of the lowest paid people in our labour market.  So, there is something around how much more we need to do to value what carers do in our society.

FKS:       Yes, I think it says a lot about our society, doesn’t it, how much we pay them to look after our most vulnerable individuals, but we’ve also got to recognise that these unpaid carers which are the people that I’m talking about, make not just physical sacrifices and mental sacrifices but financial.  They take a pay cut or they’re subsidising someone’s care which is taking its toll as well.

HM:       I wanted to ask you actually, so in his speech at the Conservative Party Conference this year, the Secretary of State for Health and Social Care, Sajid Javid said that health and social care begins at home and that people should rely on family first, then community, then the State, what’s your take on that?

FKS:       So, I tend to shy away from politics, Helen, but from my own personal perspective, one of the debates I’ve had with a number of carers is, is caring a choice and some carers feel like they’ve had no choice to take on that caring responsibility.  Some people feel that it’s an obligation that has been put, due to circumstances that they can’t control and they’re just trying to do the right thing.  I would really disagree with any situation where people are put in a position where they’re forced to care for someone that they don’t want to care for, there are consequences of that which I’m sure we can interpret which I think would be dangerous and concerning for anybody.

But what I would say is, caring quite often happens because there is a loved one trying to do the right thing and what we’ve got to do is create a system and a structure that enables them to do that, to care.  But for that to happen, we’ve got to have health and care structures around that are integrated, that are easy to navigate and support carers to contribute and upskill them in a way where we’re getting the best that is possible from them all.  So, where the caring begins at home or in another forum and what I’m interested in is making sure that if people wish to undertake that journey and I recognise that not everyone feels like it is a choice, that they are supported to do it in the best way they can.

HM:       Thanks Fatima and you strike me as a very authentic leader, somebody who doesn’t shy away from the difficult bits and you share a lot of yourself, for me, it’s part of the reason that I connect to you so much, so deeply because you really are available, you make yourself available, you make your real experiences and emotions available and for me it’s incredibly powerful to see you do that.

FKS:       Wow and that means a lot coming from you.

HM:       I wanted to ask you a bit about leadership as well, so what does compassionate leadership mean to you in practical terms?

FKS:       When I first started my journey as a public carer champion, one of my reflections of the leaders I encountered was a lack of authenticity, not that they were being fake but there was this barrier, this façade, this veneer that always seemed to appear when I was having conversations with them and I get what it is, it’s that veneer of professionalism, it’s that veneer of this is a job role that they’re fronting and I get that but what it meant to me, as a carer or a public champion was, you don’t get it, you don’t know what it feels like to be in my shoes, you don’t understand my lived experience, my journey, my frustration, my emotion.

One of the things that I encountered on my journey into leadership, your authenticity is really important in how you lead others because if people can connect with you, if they can resonate with you, if they can connect with your values, it encourages them to be their best selves but also enables them to contribute in a way that is really impactful to the work that they’re trying to do. So, going back to your question about sharing yourself, I do think it’s important to share myself and my journey because people can connect and resonate with it.  They understand that this is somebody who isn’t just talking about an agenda, this is somebody who has lived it, who has breathed it, who has experienced it and she’s coming from a credible perspective when she’s talking about her lived experience.

People, because of my role within the system, hear and act on what I say, so you mentioned the influence thing, I don’t think I have influence, come, and meet my children, they will tell you, I have none.  But for some reason, people see me in the social media world or in the workplace and think, actually, you know what Fatima said this, maybe there is some truth to it, maybe we do need to explore.  So, all those elements of the journey that I’ve just described, all integrate the leader that I want to be which is someone true to me, who might be slightly different to the usual status quo but actually is someone that people can resonate with, that you can connect with.

So, I’ve been on my own journey of really embracing my heritage, my faith and making that part of my leadership and supporting others and using my platforms to support others, so developing capability, inspiring and encouraging people.  So, once you’ve got through the door, that you leave that door open for the next groups of individuals, about mentoring, about coaching and about creating the conditions where people can thrive.  I think compassionate leadership are all those things but also creating the structure where your people feel empowered enough to tell you what you need to know, rather than what you want to hear.  I think if you’ve got all those elements in place, that’s a pretty solid start.

HM:       That’s really interesting, because I guess one of the things I was wondering is, you’re a high-profile person within health and care and often a lot can then be projected onto you, in terms of who you are and what you represent.  I just wondered how that feels?

FKS:       This is probably the biggest part of my work that I struggle with and the reason why I struggle with it is because it’s the dark side of having a profile, isn’t it, that it impacts, not just you but your loved ones and people feel that they can comment on and reflect on you as a person, without actually knowing and where you come from.  So, when the HSJ list came out, it was a really surreal moment for me because I never saw myself as anyone with influence but what was really interesting was the reaction that I got from people.

So, there was the overwhelming majority who were like, yes which was lovely and then you had others who were like, why does an Asian Muslim woman need profile, we don’t need profile from people like you, go away.  Then we had other people who were going to my loved ones going, why does an Asian woman need profile, shouldn’t she be at home raising her children and doing something far more important than making noise and pasting her picture everywhere.  That was really difficult because I’ve chosen this path, I’ve chosen to be the woman that makes noise, my family have not.  They’ve supported me, they’ve encouraged me, they’ve put up with me quite a lot when it comes to the amount of time and effort I spend on my work and what I’m trying to achieve and running around the country trying to support all these different causes because my family make sacrifices enabling me to do that.

What was really disappointing was at a moment when we should have been celebrating our collective achievement because it’s something we’ve all achieved together, some people were utilising that as an opportunity to take digs and upset people that are important to me.  One of the things I did when that happened was, I spoke to and this is a really important part of my journey, peers and leaders and said, how do you deal with this, this is really hard and some of them gave me some really inspirational guidance about how to deal with it, about how to take feedback and where it comes from and our choice to let it impact us.

I always think of Michelle Obama, her mantra, where they go low, we go high and that’s not always easy to do when you’re not feeling resilient, I get that.  But what I always try and do in those situations is surround myself with individuals like people, like you, Helen, because you’ve been a really important influence in my life but other colleagues as well, to go on feeling like this, I feel very vulnerable and other people reach out and go, well you know what, you’re doing a good job, you keep fighting, you keep doing it.  I remember a post I had put on, one evening when I was really cross about some of the feedback and saying, you all think I should be quiet, well I’m just going to be shouting even louder.

The response I got was just incredible and I was just like, yes, I’m doing the right thing, I’m going to stick at it.  So yes, profile does come with risk, I think it’s one of the reasons why women, in particular, from ethic minorities, shy away from it because of the consequences and because of the barrage of abuse that you can get but I think it’s even more of a reason for us to continue to take the space.  This is our space to take, and we need to create it as a platform for the next generation.  My motivation comes from being a mum and the world that I want for my children.  So, I will keep taking that space and making noise, so that she doesn’t have to.

HM:       And the system truly benefits from you doing that, Fatima, so we need you to carry on.  Thank you so much, Fatima Khan-Shah for joining us today, it’s been an absolute joy having you on the podcast.

FKS:       Helen, as you know, I’ve worshiped you from afar, I’ve walked with your podcast in my ears many, many years and I’ve always found it absolutely fascinating and helpful to hear your conversations about the important and topical issues when it comes to health and care.  The way in which you decipher complexity into simplicity and really keep as close to the emotions and issues that are important.  So, being on this podcast with you is an absolute surreal bucket list moment and I wouldn’t be Fatima if I didn’t acknowledge that, at least on this podcast and say, what a bucket list moment this is and what a privilege it is to be able to share this platform with you because one of the things that I always said when I was young was, I never felt like I belonged, I felt like there were different facets of Fatima.

I remember having this conversation with you at The Kings Fund of, I felt like this personality in this forum and this personality in this forum and a conversation with you enabled me to go on the journey of integrating this Asian woman who was a formidable director in one forum and this quiet person in the communities into one really powerful woman.  I wanted to thank you for that because you really inspired me to make the change.  I think you’re incredible and sharing this platform with you is a privilege.

HM:       Fatima, every time I speak to you, I always get emotional and it’s sharing this platform with you is the privilege but thank you so much for being a really important part of my life and my journey as well.

Well, that’s it from us, you can find the show notes for this episode and all our previous episodes at www.kingsfund.org.uk/kfpodcast.  You can also get in touch with us via Twitter @thekingsfund account and finally thanks, as always to you for listening but also to our podcast team for this episode, producers Ian Ford and Emma Sheffield, researcher Charlotte Wickens, Dan Wellings and of course thanks to Fatima Khan-Shah for both her time today and all the work that she does.  We very much hope that you can join us next time.