Be part of the solution
What people do not realize is that social care was privatized a long time ago and there’s a real drive towards profit. But profit and care don’t always sit comfortably together
Claire Margerison, founder of Independent Carers, a UK-based service supporting and equipping self-employed carers
It is strange the paths the mind takes. Talking with Claire Margerison, founder of Independent Carers, a UK-based service supporting and equipping self-employed carers brought me back to the galaxy of candies of my childhood. Before globalization took over, candies represented a land of experimentation: they came in every colour, shape, size, texture, and flavour. It might have just been the last chapter of the entrepreneurship of the fifties, but my childhood was filled with a universe worthy of Willy Wonka’s fantasy. There were soft and hard candies. Candies that came in a bag and candies wrapped in thin plastic sheets, some in single and some in double layers. Candies I loved and candies I hated. There were candies available in “twin” tastes, orange and lemon. There was the mint constellation and the candies in the shape of miniaturized fruits. Under their artistically decorated surface, their white interior hid specks of tartness that made the taste more interesting. I loved the soda sweets with their zig-zag sealed square packages and always challenged myself not to bite into them nor into the blackberry jellies - my all-time favourites. A white paper bag contained the tiniest sugar cones in pastel colours - light pink, yellow, purple, green, and white. Their sugar-crusted layer was filled with rose-infused syrup and their fragility made them the most sublime of all.
Then there were the tiny licorice candies called, in spite of their size, Goliath. They were wrapped individually in white paper with a green star on top. For a person who still doesn’t like licorice, this tiny candy is a rare find in the memory box. But it was inevitable considering that Claire resembles to me a David in front of the Goliath of institutionalized care. She’s fresh, direct, and full of life, and her story made me reflect upon the value of ingenuity and the need for taking change in our own hands, rather than considering the state as “the key driver of innovation,” as the economist Gustavo Sugahara pointed out in a previous conversation. Also, Claire made me realize an overlooked aspect of ageism, that is, how much age discrimination is intertwined with sexism and easing one issue will inevitably bring a positive change to the other one.
Tell us about yourself.
My background is not about care. By trade I’m an HR and training specialist. For twenty years, I’ve been running training courses for lots of different organizations, for their management population. I train managers in Leadership, HR and Performance Management. Part of my family was involved with care, my brother and sisters were all involved at some time in care. They all worked in domiciliary care with people with learning and physical disabilities. A friend of mine has a brother with learning disabilities and he’s supported in his own home. I gave some support from a HR perspective, because he got direct payments, and I helped to recruit the staff.
All this was incidental to my career path but then Jim, my father-in-law, developed Alzheimer’s disease. He was at home with his partner. She was amazing, but as Alzheimer goes, he deteriorated and they needed help. They ended up with two care agencies and lots of different carers coming to the door. But he had dementia and as much as they needed the help, this made the situation worse, it was just so confusing for him. At that point, I felt so passionate about it; I thought there must be a better way. They were in receipt of direct payments and nowhere to spend them. The agencies didn’t have the capacity to help. I thought, wouldn’t it be fantastic if we had that one person who we could pay those direct payments to. They could build a relationship. I wondered, where are those people? We didn’t have a network in the area to be able to call on friends or family and say, ‘can somebody help and we’ll pay them directly.’
And that’s how Independent Carers was born?
Yes, I set up Independent Carers five years ago and started, rather naively, with the idea of a matching site for carers, like a dating site for carers and the people who needed care. That’s how the journey started, it’s been a long journey, and I’ve been chipping away ever since. Throughout that time we had personal loss, we lost my mum and Jim within 24 hours of each other, but I kept going with Independent Carers only to find that people who want to do self-employed care are often doing it under the radar, they just make it happen.
What elements of novelty does Independent Carers bring to the conversation?
You have the trusted and accepted model of domiciliary care and care homes, and the idea to take the leap out of those frameworks is sometimes too far for carers. There are amazing carers who are on minimum wage, delivering fantastic care, but it is not working for them. My focus has really turned to supporting and equipping the self-employed carers to get out with the confidence and what they need, to deliver the care directly to the people who need it, for their benefit and the benefit of the person in receipt of that care.
How did the market react to your proposal?
It’s been quite a journey because it is not an accepted model of care in this country. I hear people saying, “I didn’t know you could do that” or “There isn’t a Register for carers.” It is my vision that we will eventually have registered carers for older people as we have registered carers for childminding. It is less of an accepted process that you would take on self-employed carers. For childminding, there is regulatory body that makes sure that it is safe, but with care the CQC, (The Care Quality Commission), is interested in agencies to deliver care and I guess they do not have the resources to pick up individuals. I imagine it is quite an expensive process to ensure that all individuals are registered with the CQC. In this country the rule is that if you deliver care individually, and you have a private arrangement between two parties, then the CQC doesn’t get involved.
Fewer people involved means fewer people to pay. It’s brutal, but does this translate into more resources for the carer?
I don’t begrudge that relationship, if an agency manages the care package and they bring in other people and they sort everything out, but not everybody wants that or indeed needs that. Independent Carers is about making connections with individuals, promoting the relationship between carer and client and having the flexibility that works for both parties. In the absence of a framework, Independent Carers is about providing the framework and the structure, the support and the network between the carers to be able to feel confident to be out there, since many people don’t know how to do it on their own or can feel isolated as a result. Some individuals do it, but it tends to be under the radar, they will get out and do it, but finding them and reaching that audience for me is difficult. I am recruiting them one by one and I love supporting them, but I am at a point where I need to scale it up. My vision is that it will work in partnership with Commissioning groups, by bringing the solution for local areas in social care and so on. If we can design the framework and say that this is what you need to do and work with the authorities to make that happen in order to leverage the numbers. As it is now, it is often left to the cash-in-hand market, with people who are willing to go out on their own, regardless of what the system says you can and cannot do. This leaves both them and the person in need of care vulnerable
How much more would carers earn if they work as independent carers compared with the traditional framework?
Invariably, if you work with an agency or care home you’re on minimum wage and not much more. At the moment, it’s between eight and nine pounds an hour. If you’re younger it’s a lot less. I tell the carers who come to me that when you are self-employed you set the rate and you have to take into account not just the minimum wage. You need to add your responsibility and the costs associated with being self-employed. You pay for your own training, insurance etc. and you pay for taking on the risk and responsibility of looking after somebody. There’s room here to earn a better wage and contribute to your own pension and to your own welfare. Ironically, at the moment, care is so low paid that the carers who are delivering the care now may not be able to afford their own care in later life, because they are not paying in sufficiently for their own benefits. For me, it’s a no-brainer. If you can earn enough to support yourself doing the job that you love, why wouldn’t you?
What about the clients, would they pay more?
No, if you add in the layer of management and overheads related to running a business, that has its place and I don’t begrudge anybody doing that, there’s potential wriggle room between minimum wage and an agency that is charging 25-30 pounds an hour. For a self-employed carer, this can be between 15 - 20 pounds an hour. To provide the service with the right insurance for the client it is potentially cheaper than having the management layer in there. As I said, I don’t begrudge people making a profit because it’s part of running a business, but I feel there’s really room for a different arrangement in the market. I choose my words carefully, because I do not want to discredit the great care agencies or businesses.
Is it more difficult to find carers or clients?
Carers, definitely. I get called regularly by people looking for carers and they want self-employed carers because they want a direct relationship and connection. There are three types of carers. The vocational carer who does it from the heart and doesn’t do it for their money, because care is generally low paid. The second type is the carer who would do it as a stepping stone for another profession, paramedics and nurses and so on. They have a reason to pick up care at that point with a vision for the future. In this country you have another group of carers who do it because they cannot do anything else. They work in a care home or domiciliary care because they haven’t been able to find work elsewhere and the demand for carers is high. That’s what we want to avoid.
Care is low paid and has a low status in this country and I’m hoping that things will change because of the pandemic and people will realize how much they risk in order to care for others. I really do hope that the view of care starts to change. The respect for nurses and doctors has improved because of what people have seen over in the last eighteen months.
When people think about care, they feel the need for a change even if nobody really knows what this change will look like. What is your take?
I think that a lot of people, and I was included in this, rather think that when we need social care, they would turn up like Mary Poppins, a person who says, ‘this is what you need to do, this is what is available.’ I couldn’t have been further from the truth. What we found when we looked for carers for Jim, and having talked with various people about what they found, social care is seriously lacking in terms of what it can deliver. We got to a crisis point where we had to get the wheels in motion and even then it was inadequate for what could be delivered for the help that was needed.
One of the reasons that makes care the way it is, is that big companies make a lot of money out of a lot of ordinary people, both those who care and those who are cared for. Do you agree?
What people do not realize is that social care was privatized a long time ago and it is very much in the hands of the private sector and there’s a real drive towards profit. Profit and care don’t always sit comfortably together. Venture capitalists are investing, and their main priority is money. I am not completely polarized in this view; I understand that we need money and investment to care for people, but it is critical that we reflect upon how to deliver care with values and humanity.
The thing that really bothers me are companies that may be in the care market that are specifically a money-making machine. I think there is a disconnect between money and what care really means to me and others and the value it has. The model of “warehousing care” - putting people in care homes - is the accepted model but if you ask people the last thing they want and their families want, is to be put into care. I want to counter this with the fact that there are some wonderful care homes out there. I don’t want to paint a one-sided picture and you would book yourself in there if you had a chance, but if you bring the element of money in that, this starts a new conversation about what we can potentially afford, what’s available and what people want. Sadly, the understanding is if I have enough money I’ll be able to afford what I need when it comes to needing the care and support. In my experience that is not necessarily the case. Alzheimer’s, for example, can be a complex, difficult disease to manage. The private sector isn’t always good at handling complex cases because, I hesitate to say it, there is no money in it, therefore we are not always protected through money.
What does our society get wrong about care?
How long have we got?
Why does care have such a low status?
We don’t value care as a society. I guess it is a legacy of the fact that it has always been provided for free, by women in the home, but we don’t live like that anymore. Madeleine Bunting, the Guardian journalist author of Labours of Love: The Crisis of Care, researched this topic and painted the picture where care is traditionally been free and therefore it is seen as a premise of women at home and family taking it on. When we wanted to help Jim and his partner, we were living three hours away, we were all working and trying to juggle both, it was challenging. In this society care is seen as low pay and low value, you hear carers themselves saying, “Oh, I’m just a carer!” We need to turn this on its head, we need to see value in care and professionalize the role and recognize how incredible these people, who do it well, are.
It is mind blowing to realize how much sexism there is behind these issues.
I think that plays a large part in how we think about care in this country. Certainly there is a larger proportion of females delivering care. Care is not recognised appropriately as a profession with a set of skills and unique abilities required to do it well.
What would really help you to propel your idea forward?
I’m at a crossroads. On the one hand I want to run for the hills because it is too difficult and yet on the other hand I just want to grasp the nettle and push through because the solution is too badly needed. I need to reach the audience in substantial numbers to create a movement so that this becomes the accepted norm in the way that we deliver social care. It is about bringing humanity and a person-centered approach to the solution. So that people have what they really want and need when it comes to old age and fragility and therefore, how can we deliver and attract the right people who are professional, caring, and are rewarded appropriately. We need to attract more carers and the right people into care, because what we have at the moment is a disconnect between what is being delivered and what people want.
Think about a keyword for care, what would you pick?
I thought long and hard about this and the word that is coming to me is humanity. Having the connection and the support needs to be at the core of care, it needs to be driven by human values not by profit. My life would be so much easier if I didn’t care! There are some phenomenal people trying to change things, raising the awareness, supporting a movement to do something about it before it is too late. We didn’t realize it until we had a problem with Jim and I think it is a ticking time bomb not just for Jim but for lots of people like him. We’ve been promised by the Government a White Paper, but we’re still not seeing it. It is in the too-difficult box. Fundamentally, as a society we are judged by how we look after the most vulnerable and at the moment we’re not doing so well and that needs to change.
