Family Carers: beyond visibility

Kevin: Good afternoon everybody, I’m Kevin Shakesheff, I’m the Pro-Vice-Chancellor for Research and Innovation here at The Open University and genuinely one of the very best bits of my job every year is the opportunity to introduce our inaugural lectures. Today we are celebrating the work of Mary Larkin. Mary is our Professor of Care, Carers and Caring. Inaugurals are just such nice events because they are the opportunity to reflect on the great work that the individuals have been doing, quite often to celebrate with co-workers and colleagues and also the wider community, so I’m really looking forward to Mary’s talk today. As many of you will know she has had global impact on her work looking at the complexity of caregiving, an issue that affects everybody’s life. Her work has led to vital contributions and new national caring strategies. She is going to explore today what visibility means for family carers and will explain her own vision of family carer visibility in the future.

Just to say that if you are busy on social media during the presentation we really encourage you to let the world know about the talk today. If you use #OUtalks that will let people know about the activity here and if you put @OpenUniveristy, again that will, I don’t quite know all the technicalities, but it will put it on the right place on various social medias so more people get to find out about it.

So the format today. I am going to ask Mary to come up in a second and give her inaugural. We’ve got a discussion then, so have a think about questions you’d like to ask Mary and we’ll have a discussion at the end of the presentation and then we’ve got a bit of a celebration downstairs afterwards.  So I’m really looking forward to it. Let me invite Mary to come up and give her presentation.

Mary: Well before I begin I’d like to thank you all for coming, whether you are here in person or online, it really does mean a lot to me that so many of you have turned up, and I know some of you have made special journeys, so thank you all very much. As you know and as Kevin said, my professorial title is Professor of Care, Carers and Caring, I have to remind myself that it’s very long at times, a title I specifically chose and my reasons for doing so will become apparent throughout the course of the lecture.

So in this inaugural lecture I’ll be taking a closer look at what we mean by carer visibility, what has driven that and what drives it, and what I’ve contributed to that and what it really means for carers. So I’ve structured the presentation under these headings.

I want to start off by taking a closer look at actually what or who a carer is. Some of you may be familiar with this definition already, but although there are lots of different definitions this definition is the most commonly used definition now. It was developed by Carers Trust in 2017. “A carer is anyone who cares, unpaid, for a friend or a family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.” So I’ve got a little activity for you and I’ve got my assistant Stacey who is going to help me with this activity. Having seen that definition, and obviously if you know it already just bear it in mind. Could you put your hand up if you are a carer at the moment. Stacey is going to work out the percentages. Thank you very much. You can all put your hands down now but you are going to have to put your hands up again in a minute because the next question is - can you put your hand up if you are a carer or you have been a carer. So if you are a carer please put your hand up again, and if you have been a carer can you put your hand up please. Thank you. Stacey is just going to work out the percentages for me because I wanted to talk to you about some national figures about carers.

As you can see from this graph, at the moment around 15% of the population are carers and its grown significantly from 2001 when it was only 2%. These numbers are predicted to continue to rise, and also as many carers don’t self-identify they don’t represent the true number of carers that are around. An example of someone who doesn’t self-identify is perhaps a husband or wife who is caring for a long-term partner. Also some carers themselves are service users. I just wanted to see how this group compares to the national figures. So 16.1%, so you are very close to the national average. With regards to the second question about 60% of us will be a carer at some point in our lives. We came out at 47% so we are a little bit lower than the national average. But 3 in 5 of us actually, our lives will be affected by caring at some point. More and more people are likely to care more than once in their lifetime and people move in and out of caring across their life course. These are referred to as serial carers, albeit a sandwich-carer and that is somebody who provides care for older and younger generations. A third of all women aged between 55 and 69 are actually sandwich-carers so it affects women significantly.

It is the ever-increasing demand for family care that drives this demand for the ever-increasing number of carers and that is also predicted to increase too. Some of the reasons behind the ever-increasing demand for carers is we’ve got a long-term shift towards an ageing population. We use institutional care far less now. Those with lifelong disabilities and children born with complex needs, thanks to medical advances, now live longer. We’ve got reduced expenditure on public services which also diminishes support available. Changes in the nature of the family, and the size of the family, lowers the supply of carers. Also there’s more and more demands on carers. In addition to having to do personal care, sort out all the medication arrangements and medical appointments because of the move to more care at home now carers are having to do far more quasi medical and medical tasks, such as changing dressings, administering injections and medication, and even home dialysis in some cases.

The fact that most people use the term in their everyday language is a relatively recent phenomenon, and it was only really in the 1980s that this term emerged in policy documents. I remember in the 1980s my husband and myself lived in Winchester and I ran a local group to support people who were housebound. We arranged for them to have visitors. Although nobody used the term ‘carer’, it really bought it home to me that behind each of those people we were visiting, there was somebody who was caring for them, but nobody said ‘carer’. Just one example is there was a lady, she was well into her 90s, she relocated to Winchester from the Midlands to be near her son and his wife. When I visited her daughter in law worked full-time and had 4 children. She’d be there sorting out laundry, sorting out food, sorting out her medication. So she was a carer in effect but we just didn’t use that term. That experience also bought it home to me the impact of caring on those people. That lady that I just referred to always looked exhausted. Then there was another carer I met in the street just chatting. She was caring for her mother with dementia and she just burst into tears because she just found it all overwhelming.

But over the last 4 years recognition of carers has grown and it has become part of public and professional discourse, and recognition of what they do as well, particularly their economic value. There is a figure that’s bandied around of £193bn it would cost to replace the care that carers provide each year, and that’s the equivalent to the annual cost of the NHS each year, so they provide a significant amount of free care. There’s also been recognition of them in policy and practice. There’s a number of policies that focus on their rights to benefits, their rights to have their needs assessed and have services if they meet the criteria, and of course their employment rights.

So what has driven this visibility? There’s 2 main drivers. Research has been really effective in raising the profile of carers since the 1980s, and it’s also inspired some really high profile programmes. You’ve probably seen them yourself. But what I want to do now is play you an extract from a ‘Woman’s Hour’ programme. Some of you may have heard it actually. It’s about a carer called Sue. The ‘Woman’s Hour’ producer has got her to keep an audio diary of her caring experiences, and they also had a journalist visit her and ask her questions. It’s an edited version of the whole programme. You’ll hear bits of her audio tapes and the interviews.

[video]

“First recording. I’m trying to change mummy, it’s becoming very difficult. I was just about to hoist her and I’m having to get her back on the bed again because she’s urinated again. I’m feeling a bit horrible, horrible daughter. OK that’s the end of the first recording, thank you, bye.”

“I used to love sailing, sailing was my passion, I love being on the water, under the water, diving, or in the water as long as I was by the sea. None of that happens anymore. What I tend to do is take pleasure in the small things that I can. If I can make her laugh or smile once a day then that’s all I need in life.

Is it really all you need? I don’t believe you.

It’s interesting you say that because underneath probably not, no. You’re right, I have to be honest. It’s that you come to accept your way of life and I think if you don’t accept it you become miserable. Yes, you are right really, I do miss it.”

“Second recording. Mum’s in terrible pain and I can’t get the message through to all these people and they’re not helping me, I’m so exhausted. I’m so fed up with fighting all the time. It’s not much to ask is it. Care, proper care, to look after somebody.

She is still my mother so I have to respect her as my mother and yet I am the person who has become the mother, who has become the decision-maker. Every day she frequently thinks I don’t love her, she’s always saying that to me, because I have become the carer. The phone just doesn’t stop at times and I’m often having to deal with phone calls with regard to care, and that’s what is so sad, because I’m doing all these things and I’m doing them for her.

You promised me. Come on please, Sue, you promised, come on, don’t break your word please…”

Mary: So programmes like that obviously reached a huge audience and raised the issues of carers and the impact of caring. Research has also been really effective in prioritising caring as an issue for social policy and practice too. The second driver behind carer visibility is the very active carers movement we’ve got in the UK and globally. In the UK we’ve got Carers UK and Carers Trust, they are the largest carers organisations. There’s also many vibrant local organisations too. At EU level we’ve got Eurocarers and at global level we’ve got Carers Worldwide, and they’re playing an increasing role globally. All these organisations within the carers movement have worked tirelessly to support carers, to raise awareness of the central importance of unpaid care to the fabric of social, family and economic life.

I’d now like just to spend a few minutes looking at my contributions to carer visibility. My commitment to improving the visibility and outcomes for carers has been longstanding. After working in local government and further education for a few years I moved into academia in the 1990s. Inspired by my Winchester experience I did a PhD in carers and their experience and ever since then carers and caring have been the focus of my research, writing and teaching activities. I continually strive to increase their visibility and improve outcomes for them, nationally and internationally. Along the way I have been very closely involved with lots of carers organisations and carers as well. So just a few examples of my contributions. As I said at the beginning, I specifically chose my title – Professor of Care, Carers and Caring. It is the first in the world to firmly put carers on the academic map. I have extended and developed the body of research, for example I have led a number of projects which have advanced international knowledge on critical under-researched carer support issues, and I’ve developed new conceptualisations of care and areas of knowledge. At both the universities I’ve worked at I’ve founded and chaired carer research groups which have configured new areas of research in each university. Here at The Open University in establishing and leading the carers research group I’ve enabled a growing number of staff, we’ve now got 60 members so it’s one of the biggest groups, to pioneer research and scholarship into under-developed areas and develop new theorisations of care. This group collaborates with other research groups, it has an advisory group and we have a wide range of external partners. We regularly hold webinars and seminar series. As part of that I regularly mentor and build capacity in others, including PhD students, to develop their skills and expertise in the field of carer research.

Other contributions have been around realising the potential of carer evidence to inform policy and practice. Once I’d been working in carer research for a while I realised that whilst there was masses of national and international literature and knowledge, and that had been really good at raising carers profiles as I talked about, and getting them acknowledged in social policy, it was all over the place. It was really, really fragmented. Because carer knowledge and research didn’t have a natural home, its potential to underpin good quality carer evidence was limited. Those who really needed to get hold of it couldn’t get hold of it. So I set about trying to put that right.

I’ve led on a number of initiatives to help realise the potential of carer evidence to inform policy and practice locally, nationally and internationally by introducing several developments which give access to this body of knowledge to the people who really need it. The first is the International Carers Research Collaborative Network which as this slide shows is based on JISCM@il. This has 300 members from all over the world, researchers, carers, service users, policymakers. It’s a really good way for them to exchange relevant information around the subject. My second effort was to initiate and co-found the International Journal of Care and Caring. This is the first ever journal to showcase work on care and caring, and it reaches a very wide audience from across the world, both inside and outside academia. Then in 2017 I led a unique project which synthesised all the carer knowledge and evidence that existed since the beginning of the century. Based on this I set up 2 unique resources. One was the Carers Hub which I co-produced with the Social Care Institute for Excellence and the other is the Carer Research and Knowledge Exchange Network which is based on the OU intranet. That has 25,000 worldwide users each year and it’s been pivotal to the government’s drive for evidence-based carer support, and it’s been a primary resource for various policies like the cross-government carers action plan and their COVID-19 carer support policy as well.

I’ve also done some work around knowledge exchange. These activities have increased carers voices and reshaped agendas and policy at organisational, national and international level. Along the way I’ve met some inspirational people. For example, Dame Philippa Russell, who I know is listening online, and David Croisdale-Appleby who is here, who both chaired the Cross-Government Standing Commission on Carers.

My activities have included consultancies. One of the most enjoyable ones was in Finland where I was advisor to the Finnish government on their Finnish national carer strategy. I’ve been the carer research and evidence lead for a range of national and international bodies, such as the NHS England commitment to Carers programme, the Standing Commission on Carers as well as at the European Commissions too. I’ve held a number of advisory posts, for example with the Cabinet Office. I've been a Commission panel member, and I've chaired various government bodies. Obviously along the way I've developed lots of partnerships with leading national and international carers organisations, such as Carers Trust, Carers UK, Eurocarers, and Carers New South Wales in Australia. I was academic consultant for the two-part BBC series ‘Inside the Care Crisis’ with Ed Balls. I was delighted recently to be appointed as a trustee for the Carers Network Westminster. Obviously, like all academics, I've got publications and conference presentations which I won't bore you with. You'll hear about one of the books in a minute. My contributions also extend to staff in the OU who are carers and to student carers. We have about 5% of our students who are known to be carers, and around 14% of our employees are carers here in The Open University.

So I've instituted and led the OU’s approach to position to support carers and to position The Open University as a field leader. In fact, we were runner up for The Guardian University Award in 2020. It is such a shame we didn't win it, but perhaps we can have another go another time. So as part of my activities in this area, I founded the Care and Caring Network at The Open University which filled a gap in the staff networks at The Open University at that time, and affected the shift from informal to formal support for carers, as embodied in the OU dependents and carers policy, which I developed with People Services. I'm really pleased to have secured the long term future of the Care and Caring Network by appointing and mentoring a new chair Nichola Kentzer who's doing an excellent job. I inaugurated a pan-Open University student carer identification and support system, and that's increased student carer participation, retention and progression. That was underpinned by some of the research we've done in the carer research group too. So we now have carer employability support. We have a student carers policy and there’s training for staff so they can be sensitive to carers needs and putting them in the right direction for support, and we have carers forums and carers bursaries.

I pioneered and organised annual Carers Weeks and Carers Rights Day events for staff and students here, and last but not least, I spearheaded the Open University's carer scholarship scheme, which is the first in the world. To date that scheme has given the gift of an OU education to 111 carers. The extract on this slide is actually from a carer who was awarded a scholarship and it shows how life-changing these scholarships can be for carers. I'd like to pay tribute to Tracy Grunwell’s amazing fundraising skills which were and are crucial to the success of this scheme.

I know I've mentioned a few colleagues, I'd like to mention so many more of you, but at this point I'd like to pay tribute to all the colleagues that I've worked with, you’re an amazing bunch of people to achieve these outcomes. I'd also like to credit The Open University as an institution for, if you like, “being open” to my suggestions and willing to support the changes that I was proposing.

My final set of contributions around teaching and learning. My own and others research has mainstreamed an institutional focus on carers which were previously overlooked in module content. So therefore we've enhanced module content and inclusivity. We've also created some novel curricula. We now have a suite of Open University-led free resources to support staff who are carers and student carers, as well as carers more generally. Not only have I maintained the momentum on mobilising The Open University towards enabling student carers to achieve their goals, but also in supporting carers into higher education. I'm currently working with a couple of colleagues from the carer research group to develop a groundbreaking and sustainable learning for carers programme and we've co-produced it with Carers Centre Tower Hamlets. So that's enough of me.

I'd like to come back to the realities of carer visibility. Because although many people want to care, and it's rewarding in many ways, research still shows that despite their increased visibility and the sorts of developments I've outlined, many carers are often disadvantaged by caring, especially over the longer term. One of these areas is employment. This is a video of a carer who's juggling work and employment. I’ll just play an excerpt of it for you to illustrate how actually overwhelming that can be.

[video]

The realities of carer visibility

Mary: So I think that’s a pretty powerful video there and it illustrates why so many carers, despite policies that have been introduced, have to either reduce their working hours or give up work. As this slide shows 2.1M carers each year have to reduce their working hours in order to juggle work and care, and 2.6M carers actually have to give up work each year. Many carers face difficult financial situations. It's estimated that around 38% of carers say they're struggling to make ends meet, and that means they have to cut back on spending on essentials like food and heating, their social activities, drawing down on their savings. They end up using their bank account overdraft facilities, being in debt and then falling into arrears with their utility bills and housing costs. Carers health is also impacted by caring. They are 50% more likely to report poor physical and psychological well-being than people without caring responsibilities. 63% of carers have at least one long-term health condition, disability or illness, and that's compared to 50% of the rest of the population, and 27% are in receipt of Disability Living Allowance. When it comes to psychological morbidity, carers are twice as likely to suffer from depression and anxiety than non-carers, and 6 in 10 carers report that they've been pushed to breaking point. Sadly there's also an emerging body of evidence that shows that carers are maybe at high risk for suicide as well.

So I'd like to spend a bit of time reflecting on these realities for a minute. Despite policy claims about the importance of supporting carers, many carers simply don't get the support they need and when they get it, it's not effective. There’s a significant gap between policy rhetoric and the realities of carers lives which is captured by Lloyd in this quote here on the slide. “Whilst the language of policies is positive and ambitious in tone, policies in practice become subsumed into the political arena where the management of resources is the primary consideration.”

Also in future carers will probably suffer more. There’ll be even more demands on them, the drive to more care at home continues, so that means they have to do even more complex tasks. Ongoing budget cuts in health and social care mean there's less support for both the carer and the cared for relative, and more and more carers are supporting more than one person and caring more than once in their lives.

So what now? Despite all the developments, the policies, the fact that carers are more visible, and they have greater recognition and there have been some efforts to improve things for carers, there have been some good policies, I'm not denying that. But there's still so much more to do to ensure equality for carers and social justice, particularly in view of the fact that more and more of us are carers and will be taking on a caring role in the future. There's a number of longstanding underpinning challenges as far as I see it. The most important is arguably funding, supporting carers adequately costs money, and however good a policy is, if it's not supported by public funding it won't be effective. Another challenge relates to carer identification. As we talked about earlier, many don’t self-identify and professionals don't routinely identify carers either. So any policy that's predicated on carers owning the label ‘carer’ will fall at the first hurdle if those who need the support remain hidden. I wanted to put forward a few possible solutions to these challenges. There's a number obviously debated around about, but these are, I think, the most significant ones for me at least. There is a case for according family care the same status as childcare. That is to regard caring for someone as contributing to societal well-being in the same way that caring for children does. That would give carers access collectively to funded public support and recognition, including a right to adequate income and paid work. So I think there's future directions for research to be considered. I think we need to raise the profile of carer research more. Many people do carer research as part of their research portfolio. We need more people who will adopt it and drive it through and see things through and take leads, and dare I say it, more Professors of Care. We need more good quality theory-based primary research which captures what carers say would help them across the whole of their life course trajectory. Others have pointed to a need for systemic changes in terms of improving carers access to the health and social care system. For example, having a trained professional who can help them navigate the health and care system and give them financial advice, talk to them about benefits and health support. So many of them report that they just feel lost in the system at the moment. Caring needs to be accorded a much more prominent political recognition. It needs to be shifted from an issue of welfare to one of social justice.

Just a few concluding comments. To me a key issue is the recognition of the fact that because we all care for one another, in our families, in our friendships, in our colleagues, caring and being a carer is relevant to everybody. Reducing the inequalities experienced by carers requires political will. We need sustained political drive to address carers needs. Therefore I'd like to end by calling on everyone listening to use whatever power, influence, resources you have to address this challenging issue that will affect us all. Those of you who are working and campaigning to empower carers and support them, I thank you, and please keep going. Those of you who are employers, if you haven't done so already, think about how carer-friendly your policies are and how carer-friendly you are. We can all do something. We can support carers campaigns. We can go on the Carers UK and Carers Trust website and see what their campaigns are at the moment and lend our support. We can talk to those we know who are carers, at work or in our personal lives, in our communities, our friends and neighbours, and encourage them to seek help. For example, you could point them in the direction of the local carers centre if they hadn't done that already. You can respond to press articles about carers and use what I've talked to you about today if some of it's new to you. In discussions you've got encourage people to think about carers. Little things can help to raise awareness at all sorts of levels. In essence, we all need to care about carers.

So we are nearly through, I think we're doing quite well for time. I'd like now to introduce my friend and colleague, a longstanding friend and colleague, Alisoun Milne, who's been the most wonderful companion to me on my journey to being a professor. We've written a book together called ‘Family Carers and Caring’, which is to raise the profile for everybody about caring, and it's not an academic book, it is for the general public. So Alisoun is going to say a few words about that. But before I hand over to Alisoun, we were asked who we wanted to dedicate the book to and I've dedicated it to my granddaughter, Alice, a very special girl.

Alisoun: Thank you very much Mary. Just a couple of words really just to sort of introduce the book in essence. Since 2010 when Mary and I first met we've established a close professional relationship, and also a strong personal connection and friendship. We share values, a sense of humour, and a passion for social justice, and about getting care and family caring on the political agenda and into the policy and public domain. I think we've had some success in achieving this, and certainly Mary has, as her lecture attests. So our book, and here's one I prepared earlier, ‘Family Carers and Caring - What It's All About’ is essentially the culmination of Mary and my collaborative journey through the carer’s terrain. We have actually long wanted to write this book, a book that is both accessible and academically informed, addresses the key questions about care and caring, describes the profile and demands on carers, and policy and support issues, and also explores the key dimensions of the conceptual and theoretical discourse around family care and caring. The publication of our book is timely. It was published almost exactly 2 months ago from today. Whilst today's focus is obviously Mary's career and her significant achievements as a researcher, scholar and all-round decent person, and her huge contribution to the world of care and caring, we'd also like to shift a few books to be perfectly honest. So there are some flyers in the foyer and there is a code which is I think on possibly this slide or another slide Mary, where you can get 30% off either an eBook or a hard copy of the book. Also we're happy to talk about it over the break, or in fact any time really.

Mary: So here ends the presentation and like all good lecturers, here's some references, if you'd like to pursue any of the issues I've talked about in more depth in your own time, or I'm obviously always happy to talk anything care related. Thank you all very much.

Kevin: Mary, thank you so much on behalf of everybody here in the audience and online, fantastic inaugural lecture. Thank you, Alisoun. I’m looking forward to reading the book. I think we're going to go over and have a chat. Have a think about any questions you'd like to ask Mary as we're walking across. If you have got a question just pop your hand up and we are going to use the mic so that people online can hear. We're going to start on the front row here.

Speaker: So firstly I'm immensely proud of my sister. I love the fact that you put up there that we may one day have carers or caring in the family on a par with childcare. I suppose I have 2 questions on that. Is there anywhere in the world where they do that and how can we campaign and what can we as ordinary people do to move that agenda forward?

Mary: It's a very good question. I don't know of anywhere in the world where it is on a par, but in the Scandinavian countries they have a much better system for supporting carers, a much more comprehensive welfare state system altogether. In answer to the second part of your question, what can you do? I think it's part of the general raising awareness of carers and joining campaigns because the carers organisations do try organising a lot of campaigns. They're very active politically. So I think to get behind them. We can't actually do it ourselves apart from raising awareness as I was saying, but to get behind people who are actually trying to affect change. Also, lobby your MP as well. Try and get the political awareness too. There's been a few politicians in recent years who have really taken on board carers, and then of course there’s a change in government, or as we all know, ministers come and go don't they. But just keep on lobbying, that's the way, that's what I would say. Thank you.

Kevin: I was just going to ask one question if that’s okay and then we've got some online questions as well. I was wondering Mary if you could have a think about the long-term future. So actually our next inaugural lecture is about Artificial Intelligence. Just down the road in Bletchley there was that conference a few weeks ago with Elon Musk and others talking about a world without work or a world with less work. I'm just wondering whether the opportunity within that is that if people are doing less standard work, there's time within life to dedicate yourself more to caring. I was just wondering whether it would be a difficult societal choice, but rather than just cashing the productivity improvement of AI, whether the way in which we invest that is in respect in caring and giving people more paid time to become carers. Just an idea, but what are the grounds for optimism in your mind about the future of caring in the UK?

Mary: It's an interesting scenario that you’ve mentioned, because I was going to come in halfway through the question until you came to the word as paid care because I think it would be important if we get to that point, we need to recognise that the care needs to be paid for, because at the moment that is unpaid, apart from a fairly meagre Carers Allowance, and not everybody gets that. So I think that's a key thing that it's paid care. But also, even when carers do have support, there's still the huge impact on them in terms of their health and the stress as well. So it's not just a question of paying them to care, it's a question of managing the other impacts of caring as well. So I think it's a very complex picture there that would need careful thinking about. But just going back to the point about having more time for caring, apparently during COVID, although many carers struggled, those who were working, because we were all confined to home, found it a bit easier to care because they were actually there. So those experiences would need to be brought into it. But that was countered by the fact of how claustrophobic it was for people who were having to care and not get out because sometimes work can be a bit of an escape can't it.

Kevin: I was just wondering, because I think it's Finland, it may be another Scandinavian country, are starting to experiment with minimum guaranteed income, not fixed to work. If you believe the future where AI and automation reduces the amount of work that needs to be done, there is perhaps an opportunity there to use that pot of money.

Mary: But as I say, there's the other impacts of caring, we can't just say people are going to care and be given the money and they'll be alright, because they won't.

Kevin: We've got some online.

Speaker: This is from YouTube Live from Melissa Taylor. Does caring get easier?

Mary: Get easier, the longer you go on or?

Speaker: The question is just - Does caring get easier? Yes I guess the longer you go on caring for somebody?

Mary: I guess it depends on the caring circumstances and how much support you get. But in general caring tends to get harder, because conditions get more complex, and there's more demands on the carer. So I'm sorry, it's a bit of a pessimistic answer. On the other hand, if you are caring for somebody in the shorter term who is having treatment for an illness, and that treatment is successful, caring will get easier.

Speaker: There's just one more quick question that I'll ask at this point, apart from some really positive comments about the lecture, the book, and the support the OU gives for the carer scholarship students. Where did you get that video at the end? The one that showed the pressures.

Mary: From YouTube. It’s a YouTube video. I'm happy to send it.

Kevin: In terms of the next steps for the research, if I had £10M to give you, I don't, but if I did, what is the big thing that's missing currently that you would love to do within your research?

Mary: Within my research, so many things. I think supporting carers to work is a big thing. I think I'd like to see more resources put into that, and I think supporting carers navigate the health and social care system is really, really important, research around that. More personal professionally trained people to advise carers. As I said in my inaugural, at the moment they just feel at sea, that came across in the audio tape. I think we need to put more people on the ground who are a named professional for carers. I think that was one of the key areas I'd like to see researched more, the efficacy of doing that.

Speaker: I think my question follows on quite nicely from what you were just talking about because what caught my eye in the presentation was the idea of political will and that being so important in terms of next steps. I just thought what do you think will it take to galvanise political will into doing something like, for example, having a carers advisor, as you've just mentioned, where people could be advised on the kind of resources available and health care available for carers?

Mary: We can talk about crises, but they don't seem to galvanise people into anything do they? It gets political and then politicians move in. I think we need a committed person in the government to try and take this forward. We saw it, dare I say it, in the Blair-Brown years because they were both committed to carers, and that's when the Standing Commission for Carers was set up. But we haven't had anyone who's been that driver since. So I think we need a key political figure that can take this forward.

Speaker: Mary, you said during your lecture that there are increasing complexities to care and the longer one cares the more complex the need for intervention. What worries me is you also said that medical intervention and support in terms of the injections for instance, if you're a professional, you're indemnified. Who indemnifies the carer if they make a mistake?

Mary: A very good point. The answer is, I don't think there is any indemnification. Does anyone have a view on that? I think that's a really excellent point. We're passing a level of responsibility onto the carers that they're not protected from and it also opens carers up to allegations of abuse which is frightening. Thank you for that question, that's really thought-provoking.

Liz: Thanks Mary for your wonderful presentation. I think your presentation really spoke to the pressures that unpaid family carers are under and the challenges ahead. I wondered whether there is an emerging evidence base to suggest what works and what enables carers who make the positive choice to care to sustain that over the longer term and find a sense of contentment, and satisfaction and joy in that work, as opposed to these feelings of strain, depression and anxiety.

Mary: I was on the NICE guideline committee supporting adult carers, and that was behind one of the aims of those guidelines. On that committee we looked at all the evidence about support. Sadly, it's a very poor evidence base. It's not a good quality evidence base. But what was shown to be most useful to carers is trusted respite care so they can get a break. Breaks for carers are really important. Also they found counselling very important too. It's also been shown that if they have enough money too, knowing that they don't have to worry about money, that's a key thing. As I said, funding is crucial to all this. So those are the main things, and there are quite a few really interesting initiatives on at the moment about respite care. I heard about one in Australia recently, because I've done quite a lot of work out there. It's called Respitality. They've married up the hospitality sector with the need for respite. It’s very innovative. They go round different hospitality venues and say what can they offer. It’s good promotion for that hospitality and they may be able to offer like a day at their spa or something like that for a carer. So I think that's a really novel idea and it works. It's win-win for both.

Alisoun: Do you mind if I just come in actually. I want to make 3 points. One is that caring is work, so unpaid carers work. There's a tendency to see caring and work as separate things, but most carers feel that what they're doing is work, it's just unpaid. The second point is about exploitation. I think politically they are deliberately exploiting family carers at the moment, I think we really are straying into that territory because the government knows that carers will care to their own detriment, that they will put themselves at risk, a lot of carers will, rather than say that they can't do this anymore. So certainly the evidence you looked at and you reviewed this afternoon covers that Mary. The third thing is, the question about what works and what support is, is always predicated on the assumption that carers want to care. The majority of course want to and are willing to, whether they make a choice about it, most carers would dispute that, I think a lot of carers would say that they didn't choose this, it sort of came upon them and they’re expected to do it. What works for them is when the state actually shares the responsibility for care with them, not takes it over, but doesn't just run for the hills when somebody puts their hand up and says, ‘Do you think I could have a little bit of help here?’ So in a way the question of what works is a trick question, I think, because is what works just making sure carers keep on caring even if in fact it's not in their best interest to do so, or indeed in the interest of the person they're looking after. So these are quite complex issues.

Speaker: Hi Mary, thank you for the presentation. It was very informative. I didn’t think I would ask a question but watching the last video I can see myself even today. I'm a carer, I work in People Services. I started working with the OU since my son was 2½, now he's 20. My son has Downs Syndrome and it was so hard before to talk to work or to do your job part-time, but since the Carer Network the OU embraced the changes. I found out that I am a carer, I can talk to my colleague, I can talk to my line manager so I got the support. The Carer Network worked very closely with People Services to send management guidance. So I'm very lucky. I've got the flexibility. I can do a full-time job and care for my son, but I think some colleagues outside People Services still don't have that. What do you think the OU can do more so managers can support the carers?

Mary: So the question is could the OU do more? Can I throw the question back at you? What more do you think as a carer, what more do you think the OU could do?

Speaker: Well I think from my experience I've got now fantastic managers, a full-time job, but I do the work and with the lockdown I've got the flexibility. I can work late. If I can't do the mornings or it depends what's needed or what challengers there are. The policies and everything, they are working hard and they send the management guidance, but I don't think all the managers understand what support the carer needs. It’s just the flexibility. At the end of the day you have to work, you have to deliver, but at the same time to have that flexibility. Like we watched the video, you take your son to hospital, you come back, you can work late after 7, but you don't get that pressure that you have to be in the office all the time, and you have to do the work straightaway.

Mary: So, I mean, you've kind of answered the question for me because I was saying we've got the policy, it is to see that implemented across the whole of The Open University. I know there's various measures at the moment. We're introducing a carers passport. Nicola, I don’t know if you want to say just a word about that. It's to support carers who move between different units.

Nichola: So we've just launched the carers passport here at The Open University and it will start in January. Part of that is some comprehensive line manager training that will come along with that. So your experience that you've had that's positive hopefully we will see consistently across The Open University.

Speaker: Thank you very much indeed. That was absolutely splendid Mary. I think we all enjoyed it enormously, so thank you very much for that. There was a question earlier about what can we do? One of the things I would like to suggest is to go back to the time that the title of the Department for Health was changed to the Department for Health and Social Care, which was a recognition that social care was an essential part of what it did. Now there are numerous government publications and non-government publications that talk about patients and the public. One of the things that I've found does get traction is when I say no it's not just about patients and the public. It's about patients, their carers and the public. I think in terms of how to get more recognition for the importance and significance of carers, every time you mention patients, which is what we do in the health sector very much, what we do in the social determinants of health as well, if we insisted on bringing in a consideration of carers in that, I think that would be a practical thing that we could all help you with your wonderful efforts to really change the social justice landscape.

Kevin: Thank you very much. Well we're up on time. So in a second I’m going to ask you just to congratulate and thank Mary again. But just to let you know that our next inaugural lecture is Advaith Siddharthan who is an expert in AI and data science. That will be on 13th of February, so please come along to that one. We also have some feedback that we do after each inaugural lecture, not about Mary, but about the general event. So don't worry, you're not being assessed on your inaugural, so please look out for those coming through. We're going to have a bit of a celebration downstairs afterwards. But can you join me in thanking Mary for a great inaugural.