Forget What You Think You Know... about adult social care

Esther  

Hello and welcome to this episode of the Forget What You Think You Know podcast. I’m Esther Barrott, an adviser at the Local Government Association.   

In this episode I want to learn more about adult social care. There has been a lot of discussion and debate about social care in the news recently following Boris Johnson’s new plan for health and social care which included a new 1.25 per cent Health and Social Care Levy based on National Insurance contributions to raise extra funding and the promise of a new adult social care white paper focused on system reform.  

I want to explore what these recent announcements mean for councils, people who draw on care and support, carers and tax payers.  

I also want to understand councils’ role play in coordinating - and in some cases delivering - care and the cost pressures facing the sector, which have been coupled with a huge increase in demand. 

The question of how to reform and fund adult social care has been considered by successive governments. The current Government has now put forward some proposals and I want to know whether people think they go far enough to both deal with the challenges facing the sector and deliver a system of social care that is fit for modern times. 

It’s time to forget what you think you know about adult social care.  

I start on my journey by speaking with Sarah Pickup, Deputy Chief Executive of the Local Government Association and former President of the Association of Directors of Adult Social Services, to find out more about how the recent announcement will impact councils and understand why local councils are best placed to lead on adult social care. 

SARAH PICKUP INTERVIEW 

 

Esther Barrott 

Sarah, the future of adult social care and ensuring people are able to live the lives they want to lead has always been a key focus for the LGA. Can you tell me a bit more about the LGA’s campaign on adult social care?  

 

Sarah Pickup 

Well, the LGA has been campaigning for sustainable funding for adult social care in order to be able to improve that care, not for the sake of it, for some years.  

And in particular, back in 2018, when the government had been planning to publish a Green Paper, but then deferred it, the LGA decided to take matters into its own hands and published its own Green Paper. 

The LGA since 2018 has continued to lobby for the reforms that we need. We have additional publications sort of one year on. We've written with partner organizations to the government in open letters. We've done joint publications on what needs to happen for the social care workforce, so really, it's pretty much continuous activity to promote what is really a important issue and affects the lives of so many people. 

 

Esther Barrott 

And there’s some confusion around who actually coordinates and delivers adult social care in people's local areas, a lot of people think it might be the NHS. That's not the case, is it? 

 

Sarah Pickup 

No the NHS isn't responsible for adult social care, but adult social care and the NHS have to work really closely together because, of course, individuals don't categorize their needs into one thing or another. They just need their needs met and it might be social care and it might be health.  

But councils are responsible for the arrangement of social care for people who approached them to have their needs assessed. And there is a statutory responsibility to assess people's needs, the services that they organize for people are means tested so some people will end up paying the full cost of their care, and even if it's organized through the Council. 

The delivery of that care is not always done by the Council. In fact, most services that people will receive home care, care homes or other services that they might purchase through direct payments are provided by the independent and voluntary sector. Councils do provide some services directly, but largely they're commissioning them from the market. 

And it is the case that the market is under extreme pressure as well, the NHS occassionaly commissions but generally doesn’t.  

 

And of course there's a whole market for social care where the council isn't involved at all. Some people go directly to a care home or to a care agency to purchase care themselves without going through the Council, and they fund that themselves. So it's quite a complex picture. 

 

Esther Barrott 

Definitely, it sounds like councils have this key role in coordinating social care services. What are the key challenges that are facing the sector? 

Sarah Pickup 

Yeah, Council certainly have a key role because even where people are purchasing their own care councils have got a responsibility to make sure that the market has sufficient capacity to deliver, which is really tricky thing to do when they're not purchasing all the care themselves. 

But what really is important in terms of funding is that, the market at the moment is not sustainable, because council budgets have been squeezed over the last decade or so, councils have been unable to give providers price uplifts that properly meet the costs that they face.  

So there is a need for in some councils in particular for the price that they pay to provide us to be increased, but they face this struggle of having the number of people that whose needs they got to meet going up and the pressure on prices going up and they have to compromise and that has impacted on providers and what it means is that for many providers they have a mix of council funded residents in care homes. And the private funding residents tend to pay more, and that's one of the things that the government is trying to address. 

 

But who pays is one question whether the individual pays or the state pays. But what people get, what they can access, whether people have unmet needs are really important questions too and equally important is that if we can prevent someone needs escalating, we should do so. And yet, because the the need for very high level services is so great, councils have been unable to invest in preventative activities. Things that would stop peoples needs escalating. 

So lots to do.  

And the workforce is the other thing I really should mention, which is that the care workforce is a very low paid workforce on the whole that frontline care worker during those in really important tasks for individuals, often in their own homes.  

It is a low paid workforce and doesn't have access to the kind of training we would want them to have. They do have training, but we would like them to have more opportunities and so we desperately need a strategy for the social care workforce which improves their prospects and their pay. 

 

Esther Barrott 

And just drawing on that point a bit more about the cost pressures around social care and funding for other Council services....How does that relationship work and what are the challenges and how does it impact on wider services the councils are carrying out? 

 

Sarah Pickup 

So councils spend a very councils that are responsible for social care, Adults and children services, spend a pretty big proportion of their budget on an adult social care, probably around 40%, sometimes more.  

So necessarily, if your overall Council budget is pretty tight as they have been over recent years and there's a cap on the Council tax you can raise and you can't raise business rates because that's nationally set and there's a limit to some of the income you can generate from other sources. Councils have got very few levers to increase the resources available to them to fund care and yet care needs have been inexorably rising with changes at demographic changes and the increases in the costs of care.  

So councils currently spend more a bigger proportion of their budget on adult social care than they did 10 years ago, which means, of course, that they spend less at the proportion of their budget on other services.  

And if you think that alongside the fact that children services have also presented huge pressures to councils' budgets, it does mean that some of the more universal services like green spaces, like supporting the voluntary and community sector, like street lighting, street repairs or the things that everybody uses, can be affected by the needs that fund these very specialist and very expensive services for people with the highest needs.  

So it's not just the fact that people aren't getting the care they need, it's the fact that areas aren't able to do many of the other things that they would also like to do for their citizens. 

 

Esther Barrott 

So the Government have announced a range of policy commitments on social care and much attention has focussed on the new Health and Social Care Levy and how that will help fund changes to the way people pay towards the cost of their care.  

The Levy will be introduced from April 2022 at which point National Insurance contributions will increase by 1.25 per cent. From April 2023, the 1.25 per cent Levy will be formally ringfenced for health and social care.  

For social care, the amount raised by the Levy will help fund the ‘cap and floor’ changes that you might have heard about it. In essence, this means that people’s contributions to their personal care costs will be capped at £86,000.  

Alongside the cap, the Government are also raising the ‘floor’ thresholds, which determine people’s contributions to care costs. From October 2023, nobody will have to contribute to the cost of their care from their assets if they are less than £20,000. This is up from the current threshold of £14,250. People will also only have to contribute to their care costs if they have more than £100,000 of assets. This is up from the current threshold of £23,250. People with assets between £20,000 and £100,000 will be required to make some contribution but the Government haven’t yet specified what this will be. In short, the Government is making the financial thresholds more generous.  

What’s the LGA's take on these proposed reforms? 

T he government has said that 5.4 billion will go to councils across the 3 year period. We don't know exactly how that will fall yet and what the government has announced that that money is for is partly to place a cap on the total amount that people could be required to spend. 

And in addition, as if that wasn't enough from £5.4 billion, the government has said it wants to invest at least 500 million in training and development and access to health and well being services for the frontline care workforce. It also wants to improve our services for unpaid carers. 

 

It has said that there will be some measures which relate to access to supported housing and investment in digital technology and also cyber security, so there's a lot of asks against this 5.4 billion. 

And the costs of the care cap actually will be not really be felt until after this first three year period and what we don't know is what allocation councils will get in the subsequent spending review period and whether or not it will all come from this same health and care levy. 

So the introduction of the CAP and the change in the capital limits will involve some more work for councils and the CAP itself will be a new burden on councils. 

in the sense that they will have to set up the system to monitor how much people are paying so that they can add up when they get to the cup, and they'll know when the state will need to step in. So there lots of monitoring systems to put in place. And also if people who previously went and organized their own care are going to come through the Council, there will be more assessments that need to be done. So there's a lot of setting up to do. 

 

And the and so in a sense, that's a new set of things for councils to do. It doesn't really help them with existing services. It helps the individuals who will hopefully pay less overtime. 

But from a Council point of view, some of the other parts of the announcement... 

We agree with wanting to support unpaid carers better. We agree with the need to invest in housing, but we don't know the detail of what's being proposed and we understand the government wants to work with us with councils to work that through. But what I think we have to say is that we don't see in this announcement the solution to the problem that we've been stressing over the last number of years. 

 

Which is that the market is unstable and the workforce is low paid and there's real problems recruiting into that workforce. And that's an increasing problem and that there's a very substantial level of unmet and under met need.  

 

And then there's also a shortfall of funding to invest in prevention and the services like reablement which is so important to keeping people out of hospital, but also helping them live,  as independently as possible in their own homes for as long as possible. 

  

Esther Barrott 

Do you think this is a moment for people of all political parties and backgrounds, people with lived experience of adult social care, the VCS etc to come together and emphasize the changes that are needed? 

Sarah Pickup 

It is really important that we shift, you know, the way in which social care is delivered for people. 

Care homes and home care will continue to be important, but we need a greater diversity of the ways in which people can be supported. We need people to have more choice and control and we need for services to be organized around the individual who needs their support, not slot people into services that we happen to have commissioned or have available.  

So we need to work with the people who use social care services and needs that support to think about how best those needs can be met.  

Yes, resources will never be endless, but we do need more resources in order to, A) support, people even in the system we've got now, but we need we need some resources to deliver the change to improve their investment in prevention, to improve that reablement and to improve the way in which we can support people to live independent lives.  

And we must be really sure to make sure that we don't talk about social care as if it's all about older people. Of course many older people are in receipt of social care, but there are many, many adults of working age, some of whom are working, who needs social care support in order to live their daily lives, and it's really important we don't forget that as we go forward. 

So it sounds like adult social care is more than just a set of services, it is about supporting people to live as independently as possible.  

Lots of people rely on adult social care, and as Sarah outlined, there are a range of different ways people can be supported by their council depending on their needs and financial circumstances .  

One way someone can receive support through their council is through employing personal assistants via a direct payment. Direct payments provide people who draw on social care money, instead of services, which can give people greater flexibility and control over the support they need.  

A personal assistant for care, also known as a PA, is someone who is employed by a person who draws on social care to provide everyday support needed to help people to lead an independent life at home. 

The person that requires the support or their representative is the PA’s employer and provides them with an employment contract.   

Their wages are paid through direct payments which the person being supported receives from their local council.  

I wanted to hear directly from someone who draws on social care to understand their experience and what they want to see for the future of adult social care.  

I caught up with Sarah Rennie, who receives direct payments and employs personal assistants who provide 24 hour care for her.  

 

Esther Barrott  

Sarah, thank you so much for joining me on the podcast today. Could you begin by telling me some more about yourself, including your work and your hobbies?  

 

Sarah  

Sure, nice to meet you. Yes, my name is Sarah and I live in Birmingham and I have a flat in the city center.  

 

I originally trained as a solicitor, but for over 10 years now I've been running an accessibility consultancy and I mainly specialize in transport, rail is a particular interest of mine.  

 

I'm a wheelchair user and I'm supported by a team of personal assistants, who are funded through and direct payment over a 24 hour basis. There's six altogether. I wonder if that's more than Katie Price entourage.   

 

Hobbies, I like reading, swimming, I am a bit of a foodie and my interests are and the rights of disabled women, feminism, and I also co-founded a group called Claddag which supports disabled leaseholders living in flats which are affected by the cladding and building safety crisis. So yeah, that keeps me busy.  

 

 

Esther Barrott  

Brilliant thank you Sarah. And what has your experience been of the care system?  

 

Sarah 

Well, The funny thing is when I reflect, a lot of people you know particularly people who aren't disabled, will often say like, oh, you must hate having someone around in 24 hours a day and all of that, and I think generally when I look at my life and I looked back I have an overall positive view and that's because I see the people that have supported me and I've been really lucky to have such wonderful PAs.  

 

So I've I've found these hidden gems, but the system itself it's been hard. It's been hard work. And so I started. I suppose when I was 18 and employing personal assistance andI've just taken a month off work and realized that actually work doesn't exhaust me. It's the managing everything, the finance, the PAs, you just can't take holiday. I've been doing it since I was 18 and I've realized it's something I can't retire from and that it is day in day out. It is exhausting.  

 

 

Esther Barrott  

From your experience, which parts do you think don't work so well?  

 

Sarah  

First of all, I find the whole assessment side of things, quite distressing actually at times because I've got a degenerative condition. I've needed 24 hour support since I was 18. I'm now 36 and my condition has not got better, so it's going to get progressively worse and has done. 

 

It's very it feels like all the assessments are trying to catch me out or work out what we can cut and that that's not really logical, you know, and it and I I almost sort of, you know, I don't. I don't blame the social workers that have to conduct them because sometimes, you can say that they are really uncomfortable doing that and having to sort of ask these questions and try and come up with ways to cut stuff and you can see that they don't want to be doing that, so I I think it's unfair on me and then they put us through that really.  

 

Secondly we don't always look at acknowledging the whole range of ages of people that are supported by the care system so you know young people, teenagers. What's their aspirations?  

And people that want to start a family and have relationships.  

 

An older person will have different goals, you know and things they want to do. So I think we're not we're not really acknowledging all those ages.  

 

Esther Barrott  

And Sarah, what would good effective care look like to you?  

 

Sarah  

One where the system itself doesn't create unnecessary anxiety. So well structured, reliable packages where my PAs feel this is a career they want to stay in and they are healthy and happy in their jobs, so you know there needs to be paid accordingly.  

 

And also not a post code lottery. I'm looking at moving maybe nearer to my family in the future and looking at the rates of pay and thinking it's not feasible, how can that be right? And I feel quite fortunate living in the city I do where it's the pay is OK, but I look outside and you know it goes right down to minimum wage in some areas and what does that say about this job? What does that say about valuing that person career and that this is a great career to get into? What does it say? I just find that really worrying.  

 

The other thing for disabled people as well is that I feel that we need to have that named social worker because at the moment the ones I've had so many of most of them they're very good, but they just pop in and out of my life.  

 

They’re just replying to me like a taxi rank and they never build up a picture. I have to repeat my life history and it's really emotionally damaging to have people come into your home and you share really intimate details, with no relationship. No raport, no sense of trust, and that doesn't serve me and that doesn't isn't right for the person conducting those cases.  

 

Esther Barrott  

Sure, looking ahead to the future. What would you like to see for the future of adult social care?  

 

Sarah  

Disabled people who are supported by PAs to be valued. The role that we play and personal assistance in the care system enables us to play in society. So you know there's an economic benefit because obviously I employ a team of six people so they have money to spend and the economy, but also the support they give some enables me in my personal situation, and it currently allows me to work.  

 

And because of that, because they're keeping me fit and healthy and comfortable and able to work, I can also provide employment opportunities for other disabled people, so the day that my care plan breaks down because it might be precarious or I can't find enough people to recruit is the day that there are economic disadvantages as well as social as well.  

 

Esther Barrott  

It's fascinating to hear that you know if social care was properly funded and valued, it would have these positive knock on effects to sort of wider society.   

 

And finally Sarah, do you have a message for the new Secretary of State for Health and Social Care, Sajid Javid? 

 

Sarah  

Absolutely, value and recognize the role that social care plays both socially and economically. The role that it plays on our health on our ability to work or jobs are right to a family life. To be an active citizen in the community.  

 

And you can't assess my quality of life on the number of times I go to the toilet. And even so, you know that sometimes considered an unnecessary luxury and that can't be right.  

 

Esther Barrott 

It’s vital that voices like Sarah’s, are listened to, and included in the government’s promised white paper on reform. We need all aspects of the social care system to be taken into account in order to see the right changes made.  

 

I want to explore another important voice in the system and try to understand the experience of unpaid carers.  

 

According to Carers UK there are 13.6 million unpaid carers in the UK. Don Brereton is one of those. He is the sole carer for his adult son, Sam. I wanted to hear his perspective on the proposed reforms and also what support could help him and his son. 

 

Esther Barrott  

Don, thank you so much for speaking and sharing your personal experiences with me today. Could you begin by telling me a bit about yourself? What are your hobbies? Where do you live?  

 

Don 

Yep, I probably start ought to start off with my age. I'm 76. I'm retired. I worked a long time in civil service also for a national charity.  

  

And hobbies, I keep the house, look after my son, like the theater, play racquetball, treasurer of my local Sports Club.  

 

And I was widowed three years ago or just over three years ago, after 49 years of very happy marriage. And that affects part of my story when I'm talking about caring for my son.  

 

00:03:02.050 --> 00:03:05.400  

Esther Barrott  

Sure, and could you tell me a bit about your son Sam?  

 

Don 

Sam is 44, was born with Down syndrome and therefore has very, varied levels of ability, so in terms of social communication and relating to people, he's got tremendous strength. He's one of the most popular people that I know.  

 

You know, a waitress comes up to the table with the hotel and said, how are we today and he says, fine, darling, how are you now? I'd probably be arrested if I kept going. Everybody can see with Sam that he just naturally loves the world and the people in it.  

 

So when it comes to many of the skills that most of us feel are most necessary, like reading and writing, operating a computer, managing money, all of that is quite beyond Sam and he needs help with that.  

 

And indeed in daily activities like keeping himself hygienically clean, shaving, somebody, cooking meals, doing the laundry, he is very dependent on others. For all those kind of daily living.  

 

Esther Barrott  

Sam sounds like quite a character. So today we’re talking about the government’s recent announcement for their plans for adult social care. This includes a new 1.25% health and social care levy based on National Insurance contributions. Don, what were your thoughts when you initially heard about the plans?  

 

Don 

My initial thought was, as I expected was that they were only covering one bit of social care and Dilnott, in his report recognized that there were people like Sam who needed support for the whole of their lives, and social care appears to be interpreted by the government to be solely focused on elderly people coming to the end of their life who own a property and may have to sell their that property, so I think they've taken a very narrow focus of social care.  

 

Esther Barrott  

Certainly and the government had promised support for unpaid carers, although we have no details yet of what that might entail. What would you like to see improved for the many unpaid carers in the UK?  

 

Don 

Well, my first challenge to the government would be that although they’ve promised that support, in all their main public pronouncements, like their health and social care white paper, the health and social care bill, the introductions to those the speeches in the House, didn't actually make any mention of unpaid family carers at all, so I think that's a beginning problem because if they aren't recognized in the initial description of how policies are going to be made in future, then that leaves them out of the picture altogether.  

 

So I think they need to start by making sure that they recognize the role.  

 

The vulnerability of carers is that none of us start off being a carer or in fact recognising that you’re a carer. I mean, Sam's my son. However old he is and and I have a responsibility to him for the rest of my life.  

 

But you care for members of your family because they're the people you love and you know that you will care for them, but in a way that introduces this vulnerability because you will just go on doing it, however difficult or however detrimental to your own circumstances and your health.   

 

Ah, there are a number of things which I think are very important for unpaid carers, that recognition which I was talking about. Some carers are in very low income.  

 

A disability is often associated with low income in the family anyway, and the people who are dependent on a carer's allowance are being asked to live on very, very little money.  

 

And carers need a break. Sometimes they need to be able to go and do something by themselves living their own lives.  

And most of all we need to have good services for those people that we’re caring for because not only did we not lose all those day services and support services more or less overnight last March. Many of them haven't come back.  

 

And there's no timetable for them coming back, which is very, very difficult.  

 

Esther Barrott 

Hearing from Don I realise how important people like Don are – not just to his son, but to the wider health and care system – and how important it is that the amazing support they give to their loved ones is recognised. It is yet another reminder that all aspects of social care should be considered when looking at reforms to the system. 

In my final interview I wanted to speak to someone who has the experience of working in the NHS and in a council setting. I want to know what they think the priorities are for local government as we continue to digest the government’s latest plans. 

Esther Barrott  

I'd like to welcome. Steven Chandler, president of the Association of Directors of Adult Social Services, also known as a DOS and Director of Adult Services at Oxfordshire County Council. Welcome Steve and thank you for joining me on the podcast. Throughout this podcast we have found out about the important role in the coordination of adult social care services. Why do you think councils are best place to do this and what's the value of social care’s local dimension?  

 

Stephen Chandler 

Well, for those of you who don't know me, I started my career in the NHS before moving into local government and one of the things that really surprised me was just how focused local government is on the people who live within their area.  

 

So I talked to politicians here, not about the half a million people who live in Oxfordshire, but the individual who lives on their street or in their in their patch.   

 

So local government is very very well aware of the pressures and opportunities there communities are facing and are really focused on doing right by the very people that are in their neighborhoods. I'm an absolute passionate fan of local government and the impact it has on people's lives.   

 

The challenge though is that we often think of local government in relation to our schools or our roads or sometimes our application for planning, but we know local government does so much more and you know  I think of local government, perhaps as a swan.  

 

You know, often you see that very serene part above the surface, whereby underneath there are so many different elements of local government really working to make a difference to the people who live in their in their patches.  

 

Esther Barrott  

I think that swan metaphor is brilliant, it's something we've definitely seen throughout the pandemic, the way local government has supported the community and so many different areas.  

 

And Stephen and I'm sure the government's recent announcement of their long-awaited plan, which they say will fix adult social care, will have a strong impact on your work.  

Can you please explain what you think of this plan?  

  

Stephen Chandler 

So for quite some time now, we've been asking government to put forward a clear plan for social care, so we were really pleased last week as it was when the government made the announcement.  

 

What we're trying to do now is fully understand what the announcement contains. Everybody heard the headlines around the catastrophic care costs and the workforce.  

 

But what we want is a plan that sets out the next 10 years for adult social care, a plan that not only deals with the pressures and there are acute pressures in adult social care, but also for those of us that are either receiving care and support today, or who are likely to need it in the future, can see something that will help us live good lives for as long as possible.   

 

I have some concerns about some of the things I've yet to hear. How are we going to make a difference? When is some aspects of the plan going to happen? And of course, really, really importantly, what are we going to do to ensure there is enough resources to meet the needs of the people today in 2021 as well as in 2025 and 2031?  

 

Esther Barrott  

And Stephen and some commentators have said that the plans narrative and focus is very much on older people and care homes. Do you agree? Do you think the balance is right?  

  

Stephen 

I think the headlines are very much focused on older people and the impact of older people and the catastrophic care costs. But I have heard very clearly referenced to working age adults.   

 

I was listening to the Secretary of State just yesterday and he acknowledged that Councils now spend more on people under 65 than they do on over 65, and I'm sure like your listeners I talked to people who aren't over 65 but yet rely on council support and they are really, really worried about the future they're worried about retaining the level of support there currently have, as well as being confident that as their needs change, they'll be able to access both the level of support and the type of support.   

 

I was talking to a friend of mine who has a learning disability just yesterday and she had a review early this week and I know she'd been worried about her review because she was worried that you might lose some support and I asked her about that and she said to me “I was really lucky, Stephen….I didn't lose any support, but I didn't get to talk about some of the things I want to do that would need more support” and I felt really sad because this is somebody I know and we all know people like that who need different support who need more support if they're going to live ordinary lives the thing that you and I take for granted, so there's a lot more for us to do.  

 

Esther Barrott  

Building on that, what do you think good at adult social care looks like?  

  

Stephen 

Good adult social care ensures that people firstly, people know where they can go should they face it a problem or challenge or have a question about their life.  

 

After asking that question, they get a quick response that response is based upon seeing the individual as a valued member of their community and where the person needs help that they're able to retain as much choice and control over how that support is organized and delivered. 

 

Good adult social care helps people remain in their family homes, in their communities. Playing an active part in our community for as long as possible.  

  

And as people’s needs increase and change, the response is flexible and quick as well, and for those people that need support, the quality of that support is second to none.   

 

And good adult social care removes the worry that people have because of their condition, they're illness, their life, changing event, and unfortunately, when I talked to lots of people nowadays who are in receipt of adult social care, they worry a lot about being able to do the things that they want to do and to retain some of the support they've already got, or in increasing cases have the flexibility to live the lives they want whilst receiving support from adult social care.  

 

Esther Barrott 

Speaking to both Sarah’s, Don and Stephen I realise how complex, yet so incredibly important adult social care is to our society. It’s not about ‘us’ (who don’t need social care) and ‘them’ (who do): it’s about all of us. 

It is used in every community and will impact everybody in some way across their lifetime. 

Everyone should be able to live the life they want to lead; to connect to the things that make them feel alive and valued. And when social care is working well, it supports people to achieve this, whatever their circumstances.  

That is the future of adult social care we should push for.  

Until next time, I’m Esther Barrott and I hope this has helped you, to forget what you think you know.