17
Examination of witnesses
Professor Nan Greenwood and Fatima Khan-Shah.
Q67 The Chair: Good afternoon and welcome to the eighth meeting of the Select Committee on Adult Social Care. We are very grateful today that we have four extremely expert, experienced academics and practitioners in this field who will help us through some very challenging questions.
First, we have Nan Greenwood, professor at the Centre for Health and Social Care Research, Kingston University London, and Fatima Khan-Shah, associate director of long-term conditions and personalisation at the West Yorkshire Health and Care Partnership. Next, we have Rohati Chapman, executive director of programmes and impact at the Carers Trust, and Dan Gower-Smith, group director of operations at the Avenues Group.
Welcome to you all. We are extremely grateful for your time and are very much looking forward to listening to you this afternoon. We are a full committee with the exception of Lady Goudie, who could not be with us. A transcript will be made, which we will make sure you see. By way of a very brief background—I am sure you have been following the committee’s work—our focus has been exploring the notion of the invisibility of unpaid carers and the impact that this has on them and the people whom they care for. We are trying to understand how that invisibility is defined and how it has emerged.
We know that these are extremely complex questions, but we are looking at all aspects of this, including the financial implications, and whether the support they receive is sufficient, whether they can access it and what the implications of invisibility actually mean for the practicalities of caring.
In these two evidence sessions—they will be split into two—we will talk to Nan and Fatima first, and, after an hour, we will talk to Dan and Rohati. We will explore some of the deeper ramifications of invisibility. We will look at the challenge of identification of carers. We know that many carers come to an understanding of the fact that they are carers quite slowly, and quite reluctantly in some cases. We want to understand more about that and how those challenges can be overcome.
The second panel will look more extensively at the delivery of care and the role of carers in that, and particularly at how we might achieve a triangle of care in which carers are considered not as another problem but as equal partners. If we can understand that and grasp some of the solutions to that, that will be an extremely important decision for the committee to come to.
I will start with a very basic question, addressed to Nan Greenwood in this case. Nan, as I have said, we have heard from quite a few carers now about the difficulty they have identifying themselves as carers. Sometimes it takes a long time; sometimes they fail to do it. When they fail to do it, it can have significant consequences on their finances, their health and well-being. Clearly, it is an important decision for them to take.
What barriers are you aware of in your work that prevent carers from making the decision to self-identify as such? Is it the same sort of problem for all sorts of carers—the ones who look after children who are disabled from birth and those who look after the elderly? What lessons can we learn and, briefly, what are the solutions that have emerged in your work? All these questions will be developed by my colleagues, but just give us an overview.
Professor Nan Greenwood: Thank you for inviting me. A lot of my work has been around barriers to accessing care. It has not specifically been about identification. I think those two things do really merge into each other, so I might sometimes slip backwards and forwards a bit.
There are a couple of general points to make. One really important one is that the caring identity is just one identity. Most people would identify with others, such as being a mother, a wife, a father or whatever. That is part of the issue. Caring comes out of pre-existing relationships. Informal caring comes out, normally, of long family histories, where you have been with somebody not in a caring relationship. To ask people to shift is quite an issue, particularly for older people who are perhaps more embedded in their spousal relationship.
We also need to remember that identifying as a carer is perhaps an admission not that you have failed but that you need support. That is a big issue for some groups, particularly for men. However, I will talk a bit about the more general things and move on to a couple of issues specifically about males and people from minority groups.
The other thing that applies to everybody is that this identification is not all or nothing. You are not a carer or not. It is something that you slip backwards and forwards with. It is a very nuanced relationship. It is also quite negotiated. All the evidence suggests that people start calling themselves carers with contact with services, for example. They do not tend to do it at the beginning. It is kind of circular. There is a real issue in that you do not call yourself a carer until you are in contact with services. So the identification thing is very complicated.
The final general thing I want to say is that caring is so often mutual. This “carer/cared-for” distinction is often very arbitrary. People are often mutually caring, especially if you are a couple who have been together for a long time and someone is developing dementia or frailty. People often say to you, “I’m the legs and he’s the brains. We’re in this together and we’re a team”. By constantly saying that you will identify the carers, we run the risk of damaging that.
I will list the main barriers. First, the term “carer” is a barrier. There is so much confusion around paid carers versus unpaid carers. I might be asked questions specifically about the language, but much as “Clap for carers” was wonderful, what a carer is was very confusing for the public.
If you want people to identify, there seem to be a lot of issues around what people see a carer as. Quite often they say, “I’m not a carer, because I only provide emotional support”, or, “I only do the finances”. They do not include themselves if they are not doing practical, hands-on intimate care. They just say, “I’m company. I’m not a carer”. That can be a real barrier to getting people to identify. You still need support if you are just doing the emotional side of things. It is not simple.
Another issue is fear of loss of control. A lot of people I spoke to said, “But if I identify as a carer, services will get involved and they might take him or her away”. There is a sense of, “I’m admitting that I’ve failed”, or, “I need support”, and therefore they might take the person away.
A really important thing is the relationship and what it does for the person who is being looked after. You talk to carers and they are very ambivalent about it. By admitting that somebody needs help, you are kind of infringing on their dignity and their self-respect. People say, “We’ve put this off for as long as possible, because if we finally say, ‘I’m a carer’, that’s permanent. We’ve gone a long way along the line and, actually, we don’t want to embark on a caring career. This is us, and this is our relationship”.
Another thing that is stark in the literature is that some carers may not identify as carers because they are so consumed by the role that they almost do not have time. They [researchers]call it ‘role engulfment’. They are doing so many different things that they do not often give it a label. Once they do start using services, there is often guilt: “Why couldn’t I manage? This is my husband. This is a family thing. I shouldn’t be asking other people”.
That is another thing that applies particularly to some minority groups but I think it applies to everybody to some extent. You often do not want other people involved. You do not necessarily want outsiders coming in. A number of people have said to me, “We haven’t told our children about this”, or, “We make it sound better than it is, because they’re busy. They’ve got a lot to do. We don’t want to get them involved in this. We can manage”. It is a kind of pride thing, I suppose.
Specifically, there are a couple of things about male carers. There is an awful lot of research about the experience of carers and not much about identifying specifically. The research about male carers is very limited. People seem to think that men are not carers, even the men themselves. One of the big issues—I think all this is changing—is masculinity. Particularly some of the older men may not feel that this is the right role for a man, so perhaps they do not want to admit that they are doing the caring and intimate care.
Some evidence suggests that they try to professionalise it. They say, “If I hadn’t had the job I had, I wouldn’t be able to organise the services. I wouldn’t be able to do what I do”, and things like that. Sometimes they do not want to be seen to have failed. That is the other thing. They say, “But I can manage this. Look at me. I’ve had an important job. I’m highly educated and I’m not managing”. By saying that you are a carer you are somehow admitting again that you are not managing. They say things like, “I’m just merely looking after her. That’s all I’m doing. I’m not a carer”.
Finally, I will say a bit about carers from minority groups. There are some very specific things. I suspect you are familiar with something that is cited very often, which is that some languages do not even have the word for “carer”. Some Asian languages such as Gujarati, I believe, do not even have a word [for carer], because you are a wife or an adult child. It is not even a concept for some people.
There is also a stigma, which some research suggests is changing, around health conditions such as dementia and mental illness. Some cultural groups do not want to admit that anybody in their family has an issue. Therefore, they are not going to come forward and say, “Look, I’m a carer and I need support”.
One of the systematic reviews I did suggested very much that there were attitudinal barriers with some minority groups: “This is a family affair. I don’t need support. We can do this. We’re a family”.
There are also practical barriers such as the perception of services not being flexible, not being culturally appropriate and not being in the right language, which sometimes is true. There were very strong feelings that people had bad experiences of social care, so to get involved in any form did not encourage them at all and they wanted to hold back from that.
When you sent me the questions, you asked what lessons could be learned from the barriers. I think some are really important. One is that not everybody wants to be called a carer. We must not force everybody to call themselves a carer, because some people really do not want it. They feel that it is a really negative thing for them. I mentioned the circularity in that so many carers do not call themselves carers until they are accessing the services or somebody is receiving benefits. Then they say, “Yes, okay, I’m a carer”, but it is not until they have had that sort of process with services that they do that. We have to make sure that people know what caring is so they do not just come when they are in crisis. That is particularly true of some minority groups and some male carers. They do not tend to come forward and say, “I need help”, until there is a crisis, which is obviously not the right thing to do.
We need to tread really carefully around saying, “You’re a carer and nothing else”, or giving that impression. It can be quite damaging for the relationship. You do not want to cause any sort of conflict. If somebody’s coping mechanism is to say, “We can manage, and actually it doesn’t matter what I call myself”, in a sense perhaps we should not be interfering. We should really be talking much more about dyads—the carer and the person doing the caring—or about families, rather than talking about carers. We should emphasise that you can be a carer but at the same time you can be a wife or a mother; it is not all or nothing.
Policy and research often talk about self-management. I do not think that is helping the situation. People are not coming forward, because they feel they should be able to self-manage. There are obviously things like strokes Where there is a huge amount of research now about self-management, and it does not encourage people to admit that a bit of support would go a long way.
Finally, there is the obvious one, which I am sure you all know about. We are not involving current and former carers enough in service development. There is such a wonderful opportunity there, especially if we take former carers who are often dying to give something back. It is not for all former carers—some would run a mile—but so many of them have lots of ideas. That would change terminology, access, how to spread the word about services and all sorts of things. We are not doing it enough.
The Chair: Thank you, Nan. That was a remarkably comprehensive account and a wonderful list. It opens huge possibilities for other questions on notions of status and how to make this a positive choice at the right time without, as you say, damaging the already very important and robust relationships that may be in place. You have given us a huge amount to think about. Baroness Fraser will now develop notions around some of the things that you have just been talking about.
Q68 Baroness Fraser of Craigmaddie: Thank you very much, Professor Greenwood. I have the language question, as you said. As Baroness Andrews said, you have pointed out the barriers and the issues of language to an extent—the term “carer”. I would like to explore a bit further what, practically, we could do to change this. You have mentioned involving carers in the discussion. You have mentioned that people have multiple identities—that they are not just carers. Nothing annoys me more than that mum and dad of a disabled child are always referred to as “mum and dad”, no matter what their profession actually is.
From whose point of view are we trying to label people? What would be the benefits of changing the language rather than, as you say, allowing people to be called whatever they are comfortable defining themselves as? From the point of view of not just the carer but the service providers, employers or tax and benefits, who are we trying to change the language for? If I could ask you to explore that a little, it would be great.
Professor Nan Greenwood: It is really challenging. I am not saying that it is an impossible thing to answer, but it is always going to be very difficult. Apart from anything else that we have not highlighted because it is so obvious, there is the diversity of carers and caring roles. It is not just the obvious things like ethnicity and gender, but the point you are at in the caring role, for example. If someone has just had a stroke, you become a carer overnight, whereas with something like dementia it goes on for a very long time and there is time to negotiate it. If you are in an acute stroke unit, you are faced with the literature and everything else.
As to what we should be doing, we should stop trying to talk about carers versus not being a carer. We should focus much more on the family. We have to try to make caring a more positive thing as well. The caring literature is loaded with this concept of ‘burden’, which I have written extensively about. It is such a negative thing. When you talk to people who are being cared for, they say, “The last thing I want to be is a burden”. Actually, carers do not talk about burden; they talk about the challenges and the specific issues. Some days it is horrendous. I am not for a minute saying that caring is all wonderful, because it is challenging, but that is the issue: it changes every day, and it changes depending on who you are talking to. For me, the voluntary sector seems to be such a wonderful way into many of these things. It does not have the same sort of paternalistic feel that perhaps health services do.
I am not sure if I have answered your question, but I think we should think much more about the positives and much more about helping people to recognise that most of us will probably be a carer at some point in our lives. It is not an abnormal thing. It is an incredibly normal thing embedded in our families and in our lives. By services coming in and saying, “You’re a carer now”, it is not just going to work, is it?
The carers might be desperate for support. Obviously, in the UK you do not tend to get support until you have identified as a carer. Again, there is that kind of vicious circle. It means we could support carers, and obviously, as a side benefit, that might be better for the people they care for. In terms of services, it also means that presumably more people will come forward and ask for support. One of the big issues, from my understanding, is that people are so often disappointed by the nature of the support that they can get.
Whatever we do, we must not keep offering something that is not going to help them. One of my bugbears—it is a little aside—is that so much of carer support is very short term. Carers are just getting into it and finding it really helpful, but then it stops. As a researcher, you cannot evaluate the impact, because it [the service] only lasts for a year. By the time the local community has heard about it, the service has finished and you never really know what benefits people unless it is sustainable support rather than just a few thousand pounds here and there to support something. That is not good for the service provider, the carers or the person they care for.
It is a balancing act, if that helps. It is not going to be easy. The benefits depend on the situation perhaps.
Baroness Fraser of Craigmaddie: Your first point was that, instead of focusing on carers, we should focus on family. Could you just explore what happens if people do not have a family? That has come up before.
Professor Nan Greenwood: You mean being a single carer.
Baroness Fraser of Craigmaddie: Yes.
Professor Nan Greenwood: You have to remember that lots of people do not have any carers either. There are those poor people who have nobody at all. Often, carers have a network of friends. It does not necessarily have to be family. In the literature they talk about caregivers, carers, informal carers, unpaid carers and family carers. People who are not directly family sometimes get annoyed by that and it is more difficult. But you talk to people and tease out very gently who might pop in from next door every day. That is what you find. Some people would never think of themselves as a carer, but they do the shopping and pop in with an excuse just to make sure that somebody is okay. They see that as friendship or neighbourliness. They do not see that as caring.
We have to widen how we see it as opposed to one end of the extreme with an isolated carer right the way through perhaps even to neighbourhoods. A friend of mine has an allotment. A lot of the people there are quite elderly. There is an implicit agreement that if somebody does not turn up one day to the allotment, on the way home someone will just check that they are okay. There is a lot of that sort of stuff going on that is so valuable. It is not necessarily caring, but it is that whole network of people that is amazingly supportive.
The Chair: Thank you.
Q69 The Lord Bishop of Carlisle: Fatima, this is a question to you, if I may. You will have gathered already from our conversation that with this committee we are starting from the idea that people who draw on care, and particularly unpaid carers, are very often invisible, and that is directly linked to various shortcomings in the social care system. I know that you are concerned with this. The slides you kindly sent through talk about a programme for increasing better recognition and support for carers.
What does the failure to identify carers, especially unpaid carers, tell us about the way in which they are valued and recognised in society, and the implications of that for them and for society more widely?
Fatima Khan-Shah: Thank you to everyone on the committee for the opportunity to speak to you all today. It was really helpful to follow Professor Greenwood’s narrative, because I am a carer and I have been a carer at various stages of my life. I have felt invisible, unseen and unheard and, actually, someone without a lot of control not only of the person that I was caring for but of my own life.
One reason for that was the complexity of navigating not only a care system but a health and care system, and the fact that many of the services that I was looking to engage with were not bespoke to the needs of my faith or my heritage. That can really take its toll on an individual who really just wants to do something that is very instinctive to them. I describe caring as someone just literally tripping up on the pavement and you put your hand out to catch them. It is literally sometimes that instinctive and that sudden, or, as Professor Greenwood has just said, it can be quite a gradual process. Neither journey has that epiphany of the light shining upon you, you have been given the knowledge of the fact that you are what society would refer to as an unpaid carer, and you are given the book of all knowledge about how to navigate and deal with this, sadly. I am working on one and hopefully that will come soon.
I cannot emphasise enough the toll and concern that comes with the disclosure that you are somebody who might be referred to as an unpaid carer. Quite rightly, as Professor Greenwood narrated, I do not call myself an unpaid carer. It was not something that I started to refer to myself as. It was something that I learned as a term that I needed to acknowledge to get access to the services that I needed to get the best care for the person I was looking after. Because of the connotations that came with it and the nature that I have, I owned it. Instead of going, “Oh, I’m not a carer”, I say, “I am a carer and I am totally owning it, because actually, without me, your service would not be sustainable”.
That is literally one of the areas in which carers have told me that they have had to flip it. It has been really difficult for them, particularly during the last two years of the pandemic, when it has come to accessing services. Services needed to be suspended, quite rightly for obvious reasons, but that has left them feeling even more unheard and invisible than they ever have been before.
One thing that carers have always said to me—and I still say this myself—is that lived experience is so crucial for the success of the change that we need to see. I have credibility with the carers I work with, because I know what it is like to walk in their shoes. I am very clear and very simple about what change needs to happen. I tell them about the change and how their contributions have led to that change.
I am also really clear that, for people who have caring responsibilities, it is a facet of who they are. Caring does not define me. It is something that I do. That is a really important step change from the narrative that Professor Greenwood quite articulately has described. The language is very important.
The rationale behind our approach in West Yorkshire, which I am really pleased to lead, was that they were brave enough to recognise that someone with lived experience is crucial to lead the change that we need to see. That came with risk, and I applaud them for taking that risk. I would like to think that that risk has paid off. It starts with the narrative that supporting people who have caring responsibilities is not only the social and moral thing to do but makes economic business sense, because carers save the equivalent of the NHS budget—or they did before Covid, and I am sure it is even more now—and involving them can really support not only the individuals providing the care but the person they are providing the care for.
In the partnership that I work in, covering a geography of over 2 million people, it is a partnership of both healthcare and voluntary sector organisations. It really believes in amplifying the lived experience of others. We have tried to amplify that narrative with leadership, autonomy and power given to the best person to lead the change, with a really clear narrative that supporting carers makes business sense, but it is also everyone’s responsibility to make it happen. It is really crucial that the leadership lead on this from the front. We have had this in West Yorkshire. It is making the agenda visible, talking about it and sharing people’s lived experience.
Quite often, many of us are in those positions. I am not the only carer in my organisation. There are many people providing care and support. If you look at last year’s staff survey for the NHS, an estimated one in three of our workforce are providing care and support. Many carers are in the rooms that are delivering the services as well as receiving them, so it is in our interest to heighten the awareness of the individuals and the fact that they will not identify as those people. They might not call themselves carers. In my case, I am a wife, a mother and a sister.
The language that we use, the conversations that we have and the environment and culture that we facilitate are all crucial for making these invisible people visible. All those elements have led to us identifying an approach that has been really successful in identifying these individuals. You have to create an environment where people feel that it is okay to do that. It has to be led by people whom they can relate to and understand where they are coming from. It also has to be in their interests: “What’s in it for me to come forward and tell you that, and what will you do about it?”
I hope that answers your question.
The Lord Bishop of Carlisle: That is really helpful. I will follow it up with one very quick thing. You have talked, as have many others from whom we have heard, about the complexity of the system and how difficult it is to navigate.
Professor Greenwood said a moment or two ago—and you reiterated—how important it is to draw on the experience of people who have been through all this sort of thing and former carers. A word that is quite often used in this setting is “advocacy”. Would you want to use former carers as advocates to help people to navigate the system? Do you think that is that one possible way forward?
Fatima Khan-Shah: I will muddy the waters and say yes and no to that question.
The Lord Bishop of Carlisle: Right.
Fatima Khan-Shah: If somebody who needs some support wants someone who understands the system to advocate on their behalf, absolutely. But I would link that with the statement, “I don’t need anyone to advocate for me. I just need to know where to go to ask the right questions”.
We have to assume that carers are not the stereotypical image that sometimes people perceive. They are like you or me. I would like to think I was fairly intelligent. I would like to think I was fairly articulate and can ask for what I need, but the system does not realise or recognise, and is not designed for, someone in my situation. That is why integrated commissioning systems add such value: because they integrate the system around the person so that the complexity should reduce, and the simplicity makes it far easier for someone to access that support.
We have many voluntary community sector organisations such as Carers UK and Carers Trust—there are many others locally in our partners in West Yorkshire—that do this beautifully for those who lack confidence or the bandwidth to be able to do it. Caring does take its toll and it can feel like too much, but I would caution against making that the assumption and the norm.
The Lord Bishop of Carlisle: That is very helpful. Thank you very much indeed.
The Chair: Thank you so much, Fatima.
Q70 Baroness Shephard of Northwold: Fatima, thank you so much for the answers you have given and for how convincingly you have spoken about the importance of carers being visible. You have given every possible reason, which will help us very much, because that is our starting point on this committee. I would also like to thank you for the presentation you allowed us all to have, which we have been able to mull over. You have talked about informal counselling, as it were, but could you expand on the role of health and care professionals when it comes to improving the identification of carers?
I think I am right in saying that you have described to us a network of GP surgeries that has managed to run together health and social services. People are being counselled, or advised, or having explanations or encouragement. In those situations, they will be able to have that within a professional framework—namely, in a GP surgery. That also has the advantage of being very accessible and easily recognisable by everybody, and respected.
Would you like to expand a little on the arguments you have already given and say how this kind of service and this sort of work can be used to improve the recognition of people who are carers, that they are indeed carers, and why that matters to them and to the wider good?
Fatima Khan-Shah: That is a very big question, Baroness Shephard, but I will do my best to break it down. Just for the benefit of other committee members, I shared a presentation that covers an overview of a programme of work that I have the privilege of leading here in West Yorkshire Health and Care Partnership. The programme of work was co-produced with people with lived experience, who told us some of the areas and challenges that they think would be really beneficial for us to work together and collaborate to support on, but it is also based on some of the fantastic, good practice that has been led from across different parties in the country.
There is a national team in NHS England that has done some amazing work that we learned a lot from, as well as excellent professionals working in places such as Surrey, Hertfordshire, Greater Manchester, Sheffield, to name just a few. That plan on a page is a really simple entity. It was consciously a very simple framework, because we wanted to be able to look at it and to understand what we were trying to do and their role in it. For different health and care professionals there will be a different role.
One area that we were very keen to work on was supporting young carers, because we know that there are children as young as five in this country providing care and support to a loved one. We know that the Covid school closures had a massive impact on their health and well-being. What we have tried do in this plan on a page is focus on supporting our young carers; improve the lives of people who balance work and caring, as I have just described; and focus on some of the avenues by which carers start to engage with health and care services.
As you rightly alluded to, Baroness Shephard, many carers will be supporting individuals who utilise primary and community care services. That could be their GP practice, somebody using the district nursing services, or, equally, it could be someone coming in for a flu jab. We wanted to utilise all avenues to identify these individuals and signpost them to services available locally for the right information, advice and support.
We also wanted to really focus on carers, as Professor Greenwood alluded to, who experience a sudden life-changing episode such as a stroke by which they start their caring journey. The relationship with our NHS providers and our hospitals, but other entities, too, is really important for carer awareness, and to provide specific tangible interventions that carers have told us will be really meaningful to them.
A key element—and it is one of the reasons why I started the work that I do—is recognising that carers have expertise and knowledge of the person whom they are caring for. It is not just a practical skill set that you develop as a carer that is transferable to the health and care sector, which we know has massive issues when it comes to workforce. It is also the expertise they have on the person they care for. They know what that person is like on a bad day. They know whether that person is going to take that tablet or not. They know how that person is going to react to a certain course of treatment, but, by default, we do not always include their considerations or perspective in those health and care treatment conversations.
I know from my own lived experience that, when we do, the impact is incredible. I was caring for somebody for 10 years who had a life-changing condition—sadly palliative. They were only admitted into hospital twice. The only reason they were admitted at all was because I could not provide that care in the community. That was because I was someone who was connected, who understood and was able to access the information and the equipment I needed to provide the care that I wanted to provide. Not many carers have that infrastructure, and I would like to create a country or a world where that is possible.
Professor Greenwood alluded to the fact that there are some specific interventions to support carers with the mental health and well-being toll that caring can sometimes take on them. Again, this was maximised in the last couple of years. We have tried to create a number of interventions that will add real value but that are strategically linked to the ways of working in the health and care system. It is not an add-on that I am asking them to do out of the goodness of their heart. It is an add-on that is in their interests to do because they are providing better-quality outcomes for the person providing care, or they are improving the quality of care for themselves as well, because they are reducing admissions and making the discharge more effective, or actually supporting someone to self-manage a condition, all of which are in the interests of the health and care system.
The other part is the Machiavellian approach, as I would like to call it, in recognising that, if professionals are aware of their colleagues having caring responsibilities and the challenges experienced by our carers, by default they will be carer aware when they deliver services. My life was changed by an intervention by a health and care professional who saw that I was struggling and gave me that bit of time and that nudge I needed to access some support and redefine my whole career and my life journey. You cannot underestimate the importance of a health and care system.
Finally, there is not a one-size-fits-all approach, so the answer to the question “Where is the best place to signpost a carer?” is that there needs to be a conversation in the language that a carer understands, in a very simple way, to develop that relationship and that trust. That can also be done at a variety of stages, because, as Professor Greenwood alluded to—it is great that she went before me, because a lot of what I am saying builds on what she describes—the situation can change. The caring can plateau for a little while and then there is a sudden deterioration, or it can be a bit of a roller coaster and then it plateaus.
We need to work towards a society that understands the incredible work these amazing individuals do, at great sacrifice, but that enables them to continue to do the other things that are important to them. We have led on the working carer’s passport that enables flexible working for carers and is crucial to its success. Identifying carers in primary care or in secondary care is crucial to things like the Covid vaccinations, because we recognised that getting our carers vaccinated was going to be crucial not only to them being able to care but for their loved ones to remain safe. We saw that the leverage of getting the vaccinations to them might be in the interests of someone disclosing. We used it quite blatantly to get carers to come forward. We created an infrastructure where we identified them and shared that information across the health and care system. In three months, we identified over 50,000 carers.
It is possible to find these people, but the structures, which are complex, have to be nimble enough to flex around the carer, because the carer will not be able to come to you, not because they do not want to or they are hard to reach, but because they have other things to deal with. I hope that answers your question.
Baroness Shephard of Northwold: It answers the question very well, but what you describe is a series of systems where there is a high level of consciousness of the importance of carers, and there must be plenty of areas where that level is not so developed. I really do not want you to feel overwhelmed by this question—you are not in the least overwhelmed; that is very clear—but how would you advise areas that do not have such high levels of consciousness? Is it exposure to other people’s good practice and that sort of thing? You have described systems that are working well in that way. What about those that are not?
Fatima Khan-Shah: I would challenge that with, “Why aren’t they?”, because it is in their interests to do so. The business case we have is very compelling and, as my boss would say, “Webster, it’s barn-door obvious”. This committee is very influential. Part of the reason why it is not prioritised is because people do not know of the case for change. If we articulated it in a way where it links to the strategic priorities of these systems, they will move heaven and earth to make it happen. Once we started that game-changer conversation and the leadership was behind it, everything started to look radically different, and it is possible because we have shown what is possible in West Yorkshire.
Baroness Shephard of Northwold: Thank you very much indeed. I think that has given a very clear way forward.
The Chair: Lord Polak, your question is to Nan Greenwood, I think.
Q71 Lord Polak: It is, but, if the committee will forgive me, I would like to refer to Fatima and wish her well in what she is doing. Dare I say that the person or persons whom you cared for were clearly very fortunate and you were able to find your way through.
I am seeing this for myself at the moment. My mother has just come out of hospital in Liverpool and we had to wait for her to come out of hospital until the care package was put in place. What was really interesting for me to learn was that the guy who was doing the discharge said, “You’re very lucky it’s Liverpool and not some of the local authorities around here”. Liverpool is very good at this, and it got my mother out within a day of when it said it would. Others are not so lucky. There is a little bit of a lottery going on.
My question is about community and where you go to find these carers. Again, using my own example, if my mother was living in London, I would have gone to an organisation within the Jewish community, to Jewish Care. It is doing amazing work. However, my mother is in Liverpool and Jewish Care does not quite have the reach over there, so we were at a bit of a loss. Had it been London I would have known where to go, but because it was Liverpool it was not so simple.
Turning to Professor Greenwood, where do we go to find this excellence and the best sort of approach to explore how we can bring in and learn where to get carers through community groups and peer-supported groups?
Professor Nan Greenwood: Thank you very much for the question. I had not thought a great deal about this until I saw the questions that I was likely to be asked. We did a survey for the Carers Trust with providers of support for carers from minority groups. We did a questionnaire with 50-odd people and then some one-to-one interviews. The one thing that came out of that repeatedly was the providers saying it is so important that we have a good reputation locally, that we are seen as trustworthy and that we provide good care, because there is so much word of mouth involved, particularly with some of the minority-ethnic communities, when they talk to each other. Whether it is community leaders or at a lower level, it is really important that their reputation is such that people will talk to each other about it and community leaders will understand.
The providers gave an example of going to give a talk about dementia to a Muslim group. Although they did not think they really persuaded people to think of themselves as carers, they made them realise that a lot of what people were going through was very common and there was support out there. It was a kind of backwards way in. They talked a lot about self-referral of carers through other people. [For example, one participant said] ‘We had one lady whom we all knew was a carer, and this went on for years. Finally, somebody in the group managed to get her to come to one of our meetings.’ It was very much an individual pulling people in from her community that was really important.
One thing about that is that it normalises it again. You have people you trust. You trust the person who is referring you, if that is the right word, plus you trust the organisation. You have to feel, for example, if you are from some minority groups, that it is culturally appropriate. If you have someone from that community who can say to you, “Yes, it worked for me”, that is what is so important.
I think we underestimate the huge significance of how an organisation is perceived by the local community. For example, some of the participants said, “We have to be seen to be welcoming to everybody, not just white British women over 50”. They felt that their information, their website and everything else had to be something that people could all relate to. You have to be very careful not to just take the easy photos, if you like.
The other thing I remember is that many years ago I did some work with Crossroads carers. I was working at that time focusing on carers of people with a stroke. There were a couple of former carers who used to sit in the reception area of the neuro rehab centre near us and they would literally chat to people as they came in at visiting time. That was an amazing way of increasing the number of people who came to Crossroads carers, which no longer exists. They were able to tell them as one carer to another, or one former carer to another, what it was like, and what this organisation could offer them. Unfortunately, I do not suppose it was properly assessed or evaluated in any research, but the number of people who turned up and contacted the services definitely went up. They said they had learned about it from this contact at visiting hours.
The other point goes back to the surveys. The providers talk so much about working with other local organisations in outreach to other organisations. This not only helps with the perceptions of a service and trustworthiness but avoids duplication of services. They said a lot, “If we can work with other people, we can pick up people and refer them back as well”. It is a two-way thing. It is about trying to support them to work with each other to undergo much more outreach, much more networking with other organisations, rather than this silo: “Here’s Age Concern, here’s the carers’ organisation and here’s the Muslim group”. It was very much about trying to build bridges for different organisations—those sorts of informal pathways.
I think it comes down to some of the things Fatima was talking about. It is about valuing and supporting current and former carers. If we think of them as having a huge amount of expertise that they can share, and spread by word of mouth, that makes such a huge difference, but if they feel marginalised and invisible, we will not be able to encourage them to be proud of what they are doing, and to see it as something good, alongside all the other things that they are probably doing.
It also comes to funding, in the sense that there is no point in offering services and then dropping them. I have said this before: if carers and local organisations get really excited about a peer support group or something, and it only lasts for six months, it is worse than useless, because people will develop a lot of support and then it is dropped. That is just so difficult for them and so challenging.
Q72 Baroness Jolly: Fatima, you have given some really interesting perspectives, but what has your experience taught you about the most effective ways to identify carers and/or encourage carer self-identification? Which is the right organisation or agency to lead this change? There is probably not a single one. I live in a really rural setting with settlements of between 10 and 40 houses. How do things work when you operate like that? Do you have insight into that?
Fatima Khan-Shah: That is the million dollar, or billion dollar, question. In answer to the second half of the question, whether there is one agency, yes, I believe there is. The whole point of an integrated commissioning system, or a partnership, is that it is a consortium of a number of organisations that will come together. However, that will only work if they share information. That is one of the biggest issues that carers tell me all the time. They have to share their story more than once. They have to speak to more than one person. That is both time-consuming and soul-destroying, quite frankly.
There is no one answer to the other half of your question because not all carers are the same. If you go back to what Professor Greenwood just testified, I challenge the whole expectation of carers having to identify at all. Why should we? The system should be bespoke to our needs and pick up what we need to do and mitigate and flex, but it should be for us, because we do so much already. That is because I have a vision of an ideal world, and I am very aware that we are not quite there yet.
A key element of the bespoke numbers of ways that we can identify carers goes back to what we have been saying all along in this session, which is that language is very important. What question do you ask somebody to get them to self-identify as what? Do we call them an informal carer, an unpaid carer, a family member? What is it?
I have taken the choice in West Yorkshire to define it as an unpaid carer, and I have a definition of what we mean by that which the system has adopted. That enables people to understand who we are talking about and what we mean.
In addition, we have tried to role model and own the title. Instead of it having this connotation of being really burdensome, it is something that we embrace, own and celebrate, because carers are incredible. We would not be where we are without them. It is in our interests to keep them going and we will shout about that.
What I would like to say to influence you about ways to go forward is to tap into some of the excellent expertise we have across the country, which has demonstrated a number of ways in which this has worked really well. There are examples in Hertfordshire where identifying carers has led to ways of social prescribing or connecting services in a way that has not been done before. There are ways in Surrey that have been absolutely game-changing too.
I am not saying my way is the best way, but I would like to articulate the way in which we supported carers, particularly during the vaccinations, where we developed a consistent definition. We plugged it everywhere. We had signs on highway boards saying, “If you’re someone who looks after somebody and you’re an unpaid carer, dial this number for a vaccination”. We then caught them and signposted that person through our internal mechanisms to the right organisation. There was no expectation for them to do it. We facilitated all of it. That was only possible because we had the infrastructure and the resources to make it happen. It goes back to what Professor Greenwood was saying, which is that, if this is truly a priority, words are not enough. We have to create the infrastructure with the resources to make this a reality. The only reason why we are successful in West Yorkshire is because our leadership did that.
The other thing I would say, and it goes back to Lord Polak’s point, is that people will only access services that will meet their needs. If you cannot relate to the person who is delivering that service, you are not going to use it. We need to think very radically about the way in which we design and deliver services. The people who are commissioning those services need to be mindful and perhaps have access to data of their population, the make-up of their population, and ensure that the services that are being commissioned meet the needs of those populations. If that is the case, you will get take-up of the communities that are not accessing services right now.
In answer to your question, Baroness Jolly, about advocates and who would encourage carers to come forward, I would caution against the use of certain individuals. I have a real resistance to the term “community leader”, because I am someone from a community and no one is my leader, but what I will do is connect other people with others. We need to advocate conduits or trusted influencers to spread the message that we are trying to give, which is, “We are trying to reach a group of individuals with this particular message and, as a trusted source of information, can you please amplify that for us?” We found in West Yorkshire that using those methods not just for identifying carers but for a number of other issues has been really successful.
The final bit, and I am mindful of not taking up too much of the committee’s time, is role models. I wish 10 years ago someone had said to me, “You’ll be all right. This is possible. Keep going”, because in that dark place I did not have the light shine on me. No one told me I was a carer. No one gave me that book of knowledge. We are creating an infrastructure now in West Yorkshire where that will happen and I would love to see that spread across the country. I hope that answers your question.
The Chair: I think the answer is, Fatima, that that certainly did answer the question. Both you and Professor Greenwood have answered all our questions with huge and articulate conviction. It has been an extraordinarily good experience for us to listen to you both and your very impressive evidence. We look forward very much, Fatima, to your book. Please get it out as soon as possible. We all need a copy ASAP.
You have used language about embracing, owning and celebrating the role of caring, while at the same time picking up on what you said about people not wanting to disclose the fact that they have become a carer. Nan made this point very powerfully as well. That shift in their relationship as perceived to access benefits, or whatever it is, makes such a profound difference to the way they feel about themselves and their own autonomy, and the way they feel about their relationships. You have uncovered such complexity in your evidence today, and given us such clarity and such clear pathways.
Congratulations to both of you for what you are doing. Thank you so much. I hope you will stay online now for the rest of the session, because I know that both Rohati Chapman and Dan Gower-Smith will have heard all that, and so what they now tell us about delivery will be extremely useful and positive in that context. Once again, thank you for your enthusiasm, your optimism, your commitment and your great expertise.
