Rachel: Hi there. My name is Rachel Harkin. I'm the head of Employment Advice Services at Independent Living Group, trading as an ILG support. In the last podcast season we were talking about some key issues that really affect individual employers We had a focus on employment law and we also looked at some social welfare principles. This season, however, we're going about things slightly differently to bring you something of interest so I'm going to hand over to David Ashly, who's going to tell you more.

David: Thanks, Rachel. I'm David Ashly from the Independent Living Group, self-confessed direct payments nerd, also really excited about season two of the podcast where we are going to be interviewing Independent Living Group community steering group members and individual employers. Hearing from them all about their experiences, employee and first assistance. Sato, we're here in your house. Thank you so much for having us. Could you introduce yourself, please? 
Sato: Yes. My name is Sato. I no longer employ carers, but I did for a period of three years.
David: You did employ carers and you employed them to support not you, but to support your partner Lawrence and we can talk about Lawrence today a little bit. There's so much to talk about with you. I've been really lucky to get to know you over the last year or two and you've been involved in the independent living group community quite heavily. I think, by the way, as a starter we want these podcasts to be of use and interest to people who might be thinking about taking a direct payment or a personal health budget, which was in your case. So can I ask you, how were you first introduced direct payments and personal health budgets? And what was the first time you even heard about them as an option? 

Sato: I used to work at a hospital and I was asked to investigate how personal health budgets could help the patients of the hospital. Obviously, there were complementary treatments involved rather than the conventional. There was conventional as well but some of them wanted homeopathy or herbal medicine, acupuncture and so on. So the clinical director asked me to investigate how personal health budgets could help the patients of the hospital that may require that kind of support. So that's how I actually came across what they were. At that time, I didn't know I would need to know on a more personal level how you got them and what they involve. What I did discover while I was looking into them was that there was nothing that made it clear cut. They call it a budget, but you haven't got a budget. You have to say what you want and how much you need it and why you need it and then they decide whether you can have flat and how much of it they'll pay for. So there was no real guidance. It was it was a very nebulous framework. And each individual, it would depend on which part of London or wherever they were coming from, which postcode area they were in. I was actually involved in doing that when I had to go on sabbatical because of my partner, which was interesting. Could not find a way of writing a briefing paper about personal health budgets and how to go about getting them, because you have to involve somebody who writes a support care plan. There's a initials they use for it, but basically it's a risk assessment of why you need it, what will happen if you don't get it, what happens if you do get it, that kind of thing. 

David: Just to take it back a step, so you understood what personal health budgets were because of your professional connection, youÕd been asked to look into them.  You ended up needing a personal budget for Lawrence. I assume there was assessment of Lawrence's needs at that point was there? What was offered by the CCG then? What was it your understanding of PHBÕs? 

Sato: No, no, no, nothing was offered. In 2015 Lawrence ostensibly went into a hospital for respite, and I think the respite was for me, not for him, When he went in, he was a certain weight certain strength. He was ill. Yes. He had been diagnosed with Parkinson's in his mid-forties. Now 62 but dementia had come into the equation. We didn't have carers at that point and I was very often having to stop work and come home and so on, so then I had to go on a sabbatical so that I could be here. I wasn't getting sleep, so the Parkinson's nurse felt that it was a good idea to have Lawrence go into this hospital for rehab for a couple of weeks, give me a break and maybe to help him because they would do rehabilitation, teach him how to walk with equipment and so on. Didn't work. I think after day one they decided that there was nothing we could do with him. He was in there for ten days. He lost a lot of weight and unbeknownst to me, they put a deprivation of liberty order on him. He was begging me to get him out. He wasn't eating, he had a puncture, a needle wound where they'd obviously injected him. It wasn't on the medicine sheet. I couldn't get anybody to tell me what he'd been injected with, so I decided I was taking him home. I was told I couldn't because of this deprivation of liberty order and I've got power of attorney I'm taking home. I had to sign a waiver saying that I was doing so against medical advice. They did provide a hospital bed. He had to stay there for a couple of days while they sorted out a hospital bed, we had to rip out the carpet floor down. I'm going to have to use it on my own. Anyway, we got him home. The doctor told me that he'd he got most two years to live and I suspect he would have had two weeks to live if he stayed there, truthfully. Anyway, he came home. They put in, I don't know what they call it, but it's when you come out of hospital up to six weeks you have carers that come. So if you only need them for two weeks, you have them for two weeks, but it's up to six weeks that you get them for 20 minutes or something to get him up or get him to bed or whatever. But it doesn't work truthfully because sometimes they turn up at 11:00 at night and that's not the visiting carers fault, it's because they're sent here, there and everywhere. They're usually on public transport or very frequently on public transport and if they're stuck somewhere else coming here at 11:00 at night, you've already done what you need so, so that, that kind of package of care is not very helpful actually, it's not helpful at all. But he was in such a bad way that he didn't put up any fight about it. I mean this is a usually a six foot three, independent person normally and he didn't put up any arguments about being washed when they did. That's right. After the six weeks, or coming towards the end of the six weeks, well, what happens now? Because his condition has so deteriorated from when he went into the hospital to coming home, I can't lift him what do we do? And the only help I got really was Age UK. So Age UK were really helpful, but in hindsight you can see that that they don't have all the information either. But the fact that they had any and were of any help was brilliant. Somehow we got a council carer person. I really don't know how that came about. That might have been Age UK, but I was told that we could. 
[11:15 Ð 11:40 inaudible] 

Sato: So but we had them coming in passing, I think it three visits a day, but most of the time I'd say don't bother because I've done it. 

David: Did it destress him to have different people, do you think?

Sato: Yeah, it was a little more organised, but still notÉ

David: Personalised?

Sato: It canÕt be, really. I mean, I tried to get continuity of care, so that it was the same people coming to many different faces when you've got dementia, it's just not helpful. I mean, some of them were good. Some of them weren't so good. The idea was that I could work upstairs but I remember one carer left, hadn't told me he left, but the relief carer hadn't come, that another time that was. That was actually further down the line because at the time we were still getting only 20 minutes a day. I was sleeping on the floor next to Laurence's bed. But again it had been done so they were just standing there, they might mop the floor orÉbut they were nice enough people and it's not their fault that they're sent from Ealing to here with a 20 minute gap. ThatÕs the care system that's not the individual's fault and I never blame them for that. But I did blame the agency for not allowing a decent transit time. I mean another time 3 carers landed up at somebody else's house and nobody was here. I mean it's so long ago, so much has happened since that it gets a bit confusing as to when the transition was, but the agency, I could not get on with the agency management at all. Basically they blamed the carers for everything and then when they sent an email to all the carers telling them that they weren't allowed to discuss their private life or say where they were going, how are they expected to build a relationship? 

[14:32 Ð 14:45 inaudible] 


Sato: TheyÕre just not treating these people right. And I decided that despite all the positives of having an agency in that you got cover if that's some of that secret or whatever I didn't like the way they were treated and I would rather have people that were treated well. Yeah. And I contacted the and the CCG and I was told that personal health budgets were on hold. 

[15:40 Ð 15:50 inaudible] 


Sato: Then dementia patients are included in having personal health budgets. So I tried them again, still told that, so I wrote to the chair of the CCG and within two days he said, Oh, yes, we'll sort that out. So then I got some guy at the CCG who recommended callers organisation and said they were reinstating personal health budgets. So I went to rules and Paula became my case manager or whatever terminology she was allocated to support me and she came over, which was great. She was brilliant. She went through helping me with the risk assessment care plan support plan and we submitted it and they crossed this out and that out and reduce this and reduce that until they finally agreed it. The one thing I would not compromise on was the amount I was paying the carers. I felt that the job they had to do, even the waking carers, you had to be on a 24 hour alert. I mean they were seven hour shifts, I didn't like people doing longer shifts because if you're doing nothing but having to be alert, it's a crucial insight that that kind of really plays into. But it was variable, so sometimes you just get up and walk. I mean he did this in the hospital they thought you was it was a visitor. He got dressed and he walked out and then they realised, oh actually he is the bloke that can't move so he would get up but then he'd fall. So they had to permanently be on alert. And also know that he would forget what he was doing. He might ask you, I need I need to deliver a package to Sainsbury's, wanted a poo or I want a Russian. I mean, now everybody's putting it on WhatsApp, you know, this doggie poop bin and they've got Putin. He was way ahead because he's say you wanted a Russian and it took me a while to work out and meant Putin. I don't know how he did it.

Rachel: So you've just described quite an intense care need there around the clock support actually. 

Sato: We took a while to get there, I have to say. 

Rachel: Yeah. I was going to ask what were the reasons, the justifications for not giving you the things that you'd asked for at the beginning?

Sato: Well, actually, there was a build up as well. Because I've missed out a part, there's so much gone on, but prior to the PHB with the council I was able to get the 20 minute, three times a day thing up to so many hours so that I could go back to work. So they would come in, but nobody would be on nights or I think I got two nights cover so if you have had no sleep, going to work and functioning is not really very good.

David: No doubt also being alert, wondering what is happening, which carers come in and all the rest of it. 

Sato: Yes, because they would be transferring over and sometimes I'd get a call saying the carer hasn't come so I had to literally turn around before I'd even got to Waterloo and get the train back, so there were those sort of things that that went on. Quite a whole load of steps really. So we eventually got up to 57 hours. The dementia specialist, she was great. She got me a mattress that I could put so I was no longer sleeping on the floor, which was great. The council person said that they could only cover 57 hours and I wanted more. I wanted night shifts covered more than anything and that was leading up to go to the CCG, the fact that the council could only do 57 hours. We had a matron who was brilliant. I have to say that there were four women who were pivotal in giving us support. One was the Parkinson's nurse, the community matron, Porter Earls, and Theresa, the dementia person. So without those four women, I think IÕd of landed up in hospital, they were brilliant. And if you can get them on your side, they will be really helpful but it took a while to get to have them. In the meantime, Lawrence had got an ungenial scrotal hernia which they wouldn't operate on and what that was doing, boys, I'm sorry, it's going to hurt you but this hernia, pushed his one of the testicles back up inside of his body and shifted the other to the other side. So painful. 18 months of him being in absolute agony that they put him on morphine, created constipation, so then youÕre having to do suppositories. We didn't have the rail going up the wall at the time, so I'd come down one night and the carer was the night carer was hobbling. I said, well, what's the matter? Said, We have been walking up and down the hall so he'd been supporting Lawrence for 5 hours walking up and down and for those 18 months of agony that he was in, he would get angry that I wouldn't help him to die and he would be asking me to help him die. The carers were hiding knives and he was in a really bad state, but they refused to operate because it would either make the dementia worse or he could die on the operating theatre. Okay, so we left it. They then offered him a truss. I don't know if you've seen them, itÕs like a medieval torture thing. ItÕs like a pad that you then wrapped around your waist and you tie it and you wrap it around your legs and tie it. This is a man with Parkinson's and dementia, how is he going to not feel that he's being bound? These are all in tandem, really. We finally got a multi disciplinary team meeting that the matron organised, where it was the dementia nurse, the Parkinson's nurse, the carer agency manager, the GP, the matron, the community psychiatric nurse, I mean you name it, they were all sat around the table and we finally agreed to get 80 hours on the CCG.

David: Was there a decision support or did they go through lots of questions about specialised care? I think they're probably looking at that point where we're saying, okay, this is going to be continuing health care funded by the health service and then you're at that point I guess whereÉ

Sato: We went from the council to the CCG for CHC. The CHC and you're assessed as to whether you have to contribute financially or not. 

David: Well if its health continue health care, you wouldn't have to contribute. But if it's social care, then there is a financial assessment to assess your conversion. So the point it goes to health, if it's 100% health, you shouldn't have to make a contribution. 

Sato: Well we didn't have to because with enough money, but we had to go through an assessment anyway and I don't know if that was to see if we qualified to go for CHC for continuing health, would that have happened before theyÉ

David: I donÕt know, we don't know the details to be fair. But generally speaking, if you're assessed as continuing health care because it's health funded, it means that they're funding that package and if it's health funded, you can't be asked to contribute to it. I think you probably had a financial assessment prior to that when it was still council funded but the moment after that that that multidisciplinary team meeting, it sounds to me like that was health. That was a concerted effort for them to say, look, this is a health concern, this is an ongoing health need and should be picked up by the NHS. And the CCG probably took the reins at that point, I would say. And probably that then your kind of contribution would have been out the window, but then you would have been probably dealing primarily with the CCG after that.

Sato: Yeah, we didnÕt deal with the council after that. They only gave us 80 hours a week because we had to go to that because the council would only do 57 hours. 

David: Okay. So now you've got some more hours covered. 

Sato: Now weÕve got more hours covered and I remember the Parkinson's nurse saying that she had a caseload of 500 people, three of which were extreme cases, extremely complex and two of them were in the nineties and then there was Lawrence, who was early sixties, and she said there was no care home that would take him because of the nature of his illness, the manifestations of his illness and the challenging behaviour that came with it. 

David: And I presume, was that an option on the table that you were exploring? 

Sato: He never wanted to go into a no home, so I was never. But itÕs cheaper to put someone in a care home. 

David: So the idea of a direct payment that or a person health budget. So if a direct payment is a form of a personal budget or a way of receiving the best health budget, wasn't in your experience on the table or around as an idea as much asÉ

Sato: I was I think had still been on hold because rules weren't involved at this time. It was still personal health budgets because I think I first applied in 2016. I didn't get a personal health budget until I think the first employee I got was in September 2017. So it took a long time to get the personal health budget.

David: And if we jumped to that point then you had support from rules say at this point your understanding that you're going to become an employer. I mean there was so much going on that you described I guess because, we often talk about becoming an employer and what that means and how that can be quite daunting, but I think so helpful to hear you talk about your experience because it's daunting, but when faced with all of that stuff, that you've had going on, that you've been having to manage and cope with your priorities, Lawrence's wellbeing and how you're going to cope together in the house, I guess that puts some that's really useful context, isn't it? So becoming an employer wasn't such a huge deal for you.

Sato: YouÕre looking more what your needs are. Yeah, the rest of it, you don't really know what you're doing and there isn't anybody who's helping you until you until I got to the point where I've got rules involved, this is on my own effectively. 

David: So rules were telling me we can do your payroll for you and we can manage the money for you?

Sato: I asked them to do that. 

David: Did insurance come into the conversation that point?

Sato: Yeah.

David: Were you aware of the legal advice you can get via insurance, for example, that you might nee? Was that just in the background? 

Sato: In my normal work head capacity, all of those things would have gone through my head. In the situation that I was in, I was a mess. I had been a patient representative for an of doing political work on behalf of patients wanting complementary medicine for 40 years, and if I found myself not knowing how to navigate the system and being in a mess, how is it going to be for most people? I'm not saying that that makes me an expert, but it does give me a leeway or a bit more information than most people who land up in that situation.

David: Yeah, you consider yourself adequately informed, and you'd have done some research on personal projects, so you had something there.

Sato: So if you actually just being discharged from hospital and most people, I suspect, would not have a clue how to go about any of this and if they are told as I was, but you're not entitled to this or that this isn't available to you, youÕd believe it. And this is really how we got involved because they came and cut my budget with seven days notice. We will get onto that but most people will have accepted it because that's what they're told they have to do because this is the system. Most people go for it. I mean, for me, even now, I can't do a sequence of events and the sequence of thoughts of how we got into various positions because most of the time I wasn't sleeping and if you're not sleeping or if your partner, who is usually the most gentle soul, quiet soul, is ripping your shirt off and accusing you of being his jailer, or you are not thinking about the legalities of this. I just know if he attacked a carer, I'd stand in the middle because my duty of care was also to them as well as to him. You know, it's not a case of they're paid, they can take the punches. No, it doesn't work like that. You know, because you know that's not the person, that's the illness or the drugs, I don't know which but it certainly wasn't the person I'd known for 40 years. 
David: So if I might ask about your PAÕs then presumably you did you have some long term PAÕs for the period that you were an employer then?

Sato: The very first PA I employed was one who I poached from the agency, because the agency had stupidly not got me to sign the things saying I would not employ any of their carers and so therefore, thatÕs their fault, I don't feel guilty and he stayed with us to the end, when he was a night carer and he did four nights a week and while he was doing that he was doing a degree in child psychology, which he now has and he's now a social worker which is great, but he could have left well before because he got his degree about a year before he finished with us, but he said he would stay to the end and he would have done. The second carer I got, I got through the rules interview, they have a website for and I got a phone call from a guy, terrible CV. He did not do CVÕs, but I spoke to him on the phone and he had a good way about him and I thought, okay, we'll take him on. So one was September 2017 the next one I employed. October 2017. The third, Paula from Rules helped me interview and he came over very personable and he was good with Lawrence. So that was the third one. The fourth one was a woman, a South African woman but she spent more time looking at the cat and she'd be helping Lawrence and talking to the cat as though he was a package. So after six months, I said during the probationary period. Said it's not going to work. He's not an add on to playing with the cat. So she went and then we got another woman. The women weren't very good, actually, with Lawrence, I don't know why, but anyway, we ended up having three women. They all left, then we got an another of the agency carers who had stayed with us as we were transitioning so IÕd employed 2 carers, was still using agency staff as well. And this one I was, I was incredibly impressed with this one because he had to teach one of the new carers that we were going to employ directly. So he is getting agency pay of £8 an hour and he is teaching the newcomer, who has no experience in care work at all, who's being paid £11 an hour and he had been told by his agency manager not to do so and he still did it and he did it thoroughly. I was so impressed with how he was explaining how Lawrence needed things this way or whatever. And I said to him, You know, I really wish you would come a couple of months later. He did. He actually did join us, which was great. And he stayed with us right at the end. In fact, he was with Lawrence when he died. And then the final one was another agency person who was working there and part time with me.

David: So I know it's probably really difficult to do it, but what impact on Lawrence once that team had been established? I know there were one or two changes in the periphery, but you already said that two in particular stayed. I mean, is it possible to kind of summarise that what impact you think that had? Because you've described a lot. I mean, we do lots of talk around being an employer and responsibility against the benefits and barriers, but youÕre making it so real in your description and I wonder what difference did it make?

Sato: Well, First of all, Lawrence wasn't anti-social, but he wasn't a social person. He was a very self-contained individual. He travelled from Ethiopia to Cape Town on his own in six months. He worked as a landscape gardener on his own. He liked his own company. I often described, it was like living with a bachelor. A bachelor who lived with a woman. He hated chit chat, so anybody who just, you know, how are we today? Would just rub him up the wrong way. But if he wanted to come in and have a proper conversation, he was all there. So that's why I say he's not anti-social, but wasn't into chit chat and if that's all you had, just go away. He was not interested. Just wouldn't give you the time of day. So one carer said to one of the other carers, ÔItÕs alright for you. He likes youÕ and this carer who'd been with us for a long time, said he doesnÕt like anybody, he doesn't like any of us being here. He puts up with it because he has to. When his son asked him, How do you feel about it? He says, I dread them coming but I dread them going. So that's how Lawrence dealt with it. And sometimes he would shake their hand and thank them for what they were doing and another time he'd have them rotted in the bathroom, ÔI've caught the thief,Õ but the Lawrence without the illness would have been the one that would have really appreciated what they were doing, why they were doing it. The ill Lawrence, they were jailers, they were thieves, they were bullies and it would interchange. So sometimes he's shaking their hands, another time he's twisting their arm. I got a phone call, 2:00, one morning, ÔI'm outside, Lawrence chased me out.Õ You just never knew. You never knew. 

David: So in terms of being an employer, looking back over it what do you think stands out was the issue that was really testing as an employer specifically? I mean, you've mentioned a few things that might have been a bit of a headache, but is there anything you can point to?

Sato: Effectively you have nothing in common with these people. They are strangers who become family. They become family because they see you, warts and all. There is no doubt and they see you at your worst. That is it. Me included, not just Lawrence, they get to see who you are, nothing else. So they effectively become family despite the fact you don't know each other. So it's a weird thing. When you make it work, it's it's the best thing in the world because as I said, no pretence. And they're there for you. They've got your back. You've got their back. When it's at its worst and I had this with only one of my carers where he was great with Laurence, he had a nice way with Lawrence, but he would basically gainsay everything that I wanted done. If I said I want the medicines done, Well, why, why would you want to give him at them? Why? Why not now? Basically if I said I wanted the room blue he'd say it's better green, then I'd send him to get the blue paint and he'd come back with the green paint. That was, that was the relationship. But he was good with Lawrence and since my priority was that Lawrence had continuity of care, I put up with this person far longer than I ever would have done had I been employing him in a work capacity outside of the home. In the probation period, he did a few things which I talked to him about, and I had mediation with rules. People can be very personable and can say the right things, and yes, I won't do that again and so on. But once but probation period is over...

Rachel: Were you aware that even after a probation period, within the two year mark, you could still look to dismiss and not face unfair dismissal case? Is that something that you were aware of at all?

Sato: No, when I did want to, I'd given him verbal warnings, two written warnings, on the second written warning, which they have to sign the written warning, he put a big cross through it saying, not true, I resign. So thanks very much, when do you want to go? 

Rachel: So he didn't even accept you disciplinary outcomes.

Sato: He was a bit nonplussed that I actually jumped at his resignation because I think he was trying to call my bluff and I think had I capitulated and said, oh, no, don't go. That would have been detrimental to the working relationship in any way. He would basically have had carte blanche to do and say anything he wanted whenever he wanted. There wasn't that respect, I think. And I don't understand why because I hadn't got that problem with any of the others you know, all the other carers, I think if you talk to any of them, they would say that if I pulled them up, how I did it and why I did it had been fair because I am and it sounds big-headed, but I am fair and I wouldn't pull them up unless it impacted on Lawrence and that was my concern. That was only time. So no, but this one wasÉI did ring the insurance people about this person and I was told that I couldn't just dismiss him, had to be disciplinary, they had to be a tribunal. He was unable to bring somebody with him and all of that. So I did get that advice, but what do you do when a relationship with the carer who is so effectively part of the family, that's how intimate the relationship has become, that you can't bear to have them there anymore, but you have to have them there for another six months while you go through.

David: In the first season, Rachel and I had a conversation in one of the episodes about SOS.

Rachel: Yeah, I mean the difficulty with essentially what we were talking about in the program was where the reason isn't related to conduct. It's actually related to something very substantial, substantial reason where you get to the end of your tether and youÕre thinking there is no other way forward and there is a couple of pieces of case law that tackle that in the individual employer setting. So it's particularly relevant where you have somebody receiving the care and perhaps isn't in a position to explain themselves, but the employer recognises that they are not wanting to work with the carer and that, you know, even if the employer is thinking, well we don't know why there's no actual good reason for this, the very fact of the matter is that there's nothing the employer can do to fix it, even if it means that the person receiving the care is being completely irrational and unreasonable, what more can you do? So under circumstances like that, you may well have good reason to go forward with the dismissal, even if the carer has done absolutely nothing wrong. And then of course, we have another case where the employer was the recipient of the direct payment and again, it wasn't strictly conduct related, it was really it was a little bit of both of them. I think both parties had simply fallen out and it made it quite clear that they couldn't move forward. Now, the advantage we've got after a number of years of direct payments being in play is we're seeing that employment tribunals of recognising that this is an employment scenario, where you're not necessarily going to apply the rules in quite the same way that you would to a business or commercial set up. The judges are recognising the intimacy of that relationship. Everything that you've been describing is being seen by the tribunals and will be taken into consideration in the in the deciders. I think the difficulty is, though, in the story that you've just told about the employee, it was predominantly conduct related, and that's why the relationship broke down. So I kind of agree that we probably would have approached that through disciplinary processes as well. Now, if you've got somebody who's committed an act of gross misconduct and I know you were telling us a story earlier, I think that chap had disappeared out of the country, just gone completely awol with no good reason and not to be attending work. That's the sort of process where I could have guided you through, getting through it quickly and when they returned to work or at least back in the country, get them into a disciplinary and get that decision made quickly. It should not last for six months. And good, robust advice would make that process a lot quicker and put you in a solid position sooner. So we need to make sure that all direct payment employers are getting good, strong advice and have got the confidence that they're doing the right thing. Whilst not, I think it's too easy sometimes for advisers to just simply think about the employment law issues and forget what you're telling us, forget the story. You know, they've got to be thinking along the lines of being in your position. This is somebody who you are working with very intimately in your own home and I feel very passionate about making sure that anybody who is advising employers don't just apply the law strictly. Let's think about the circumstances as well.

Sato: Yeah. Just imagine if you had to have them in your home.

Rachel: Absolutely.

David: And you described so well how it fell and it felt unbearable. How do I manage this situation? And as Rachel said, you've had these little bits of conduct, things going wrong leading up to the situation described.

Rachel: And just for the benefit of anybody who might be listening to it, you I know you said earlier that you'd gone through disciplinaries, given warnings, written warnings. For all employers, it's really important that those sorts of warnings are done. Initially, you might want to give an informal, but those sorts of warnings then actually follow a disciplinary meeting because in doing so, you're building up a disciplinary record that follows the code of practice and that actually means that you get to the dismissal point an awful lot quicker. 

Sato: I had done that with giving verbal warnings which IÕd written down and recorded put in the file. There were two of those. I mean, there were lots of verbal ones, but two formal verbal ones, one with rules.

Rachel: And had you gone through a disciplinary meeting with the employee before you gave that written warning?

Sato: Yes, it was a result of that. Yes. Then I did a second one where there wasn't a meeting because having a meeting, he would not let you speak. YouÕd open your mouth to say what was wrong and he was ÔboomÕ at you.

David: And were you seeking advice not just from rules at that point because in some in some cases, I suppose we often talk about a kind of hybrid of advice. So you might be seeking advice from somebody like Paul at Rules, who might say to you, well, who are you insured with? Let's contact the insurer. And, you know, for me in my background at direct payment support, that would be if I was supporting you, that's how I would approach that and say, well, you know, let's bring the insurer in.
Let's make sure we're following that advice so that you can be guided by Rachel or someone like Rachel who can lead you to the conclusion.

Sato: It was Paula who would always advise me.

David: And I'm sure she would have been doing that. So, that's the message. It so often I think people described like you did, how frustrating it be. What do I do when the relationship is completely broken down and there's a whole catalogue of reasons for that? But without the body of evidence that Rachel just described, which you were obviously doing, it's very, very difficult to unpick, isn't it? And then it becomes even more stressful because you're all suddenly together lots of evidence and things. And you havenÕt got them, so it can be really tricky.

Rachel: We've talked about some of the difficulties of being an employer. If you were talking to somebody here today who is thinking about taking on a direct payment and were a little nervous of taking on staff, what would be your top tips, whether that be how to handle the good, the bad, the ugly.

David: Things you wish you knew and someone in your position perhaps now who might be listening.

Sato: I think before it gets to the point where you are going through the process of getting direct payments, get as much information as you can. And that is not going to be easy because it's just not there. There needs to be a guidebook of what to do when someone is discharged from hospital who is going to need ongoing care. There needs to be a simple guide of who to go to because although Age UK helped me, it wasn't always the most informed advice. It's a bit like going to the Citizens Advice Bureau. Depends who you get. You get the best advice or you don't get the best advice.

David: So a clear pathway?

Sato: Yes and really it would be great if someone were to prepare such a book. You can go to the council initially, get a social worker, but they'll only do so many hours. Is that going to help you when it gets past those hours? Then you have to go to the continuing health care.

Rachel: Did you feel that the social workers were sufficiently well informed about direct payments?

Sato: No, not at all, because at one point he told me we could employ a live-in carer and then I was told, Oh no, you can't. And I have to say that the social worker we got, initially you felt like it was a bit hare and tortoise. You were the hare and he was the tortoise but the tortoise got there. To increase the hours that we were getting to their maximum I think he had to go in front of a panel of three or four or five people to plead our case and because of his tenacity, his feet rooted in the ground, however slow, I think he beat them into submission. ÔWe're never going to get rid of him unless we say yes,Õ but until that point, I felt that he didn't move at all. But at that point, I realised that actually he was there, it's just he had a job to do, but he had to do it within the confines of his employer's requirements. And when his back was against the wall and it was a case of fighting for us, he did. And I think they just capitulated to get rid of him because I think that it's usually a like a 15 minute interview, why should why should they have these extra hours? 45 minutes later and you knowÉthis is like pushing him out the door. So he was great, you want your social work on your side. We had the same social worker from the get go. I understand from Jade, another member of the community, that you now get different people, so they're not even people who can see the changes that are going on. If a social worker came that hadn't known Lawrence in one state say he was doing really well, theyÕd think well, he got up and went to the loo and himself, he held his cup of coffee himself, he doesn't need help but another one would come and he wouldn't be moving or he he'd get up and fall down or whatever. I mean, they wouldn't see there's nobody other than the carers who actually saw the varying states, not his family, nobody.

David: So I think then information, pathway, another thing that jumps out and you just highlighted there and talked about your social worker and also you talked about your PA, earlier on you said something about four key women and so good people then, recognising the good people that are pushing the boat out to help you and really working with those people is another thing that, is that another thing?

Sato: ThatÕs another thing, because if you need care you're going to at some point have to deal with the community staff, the community matron. We had a brilliant one. She left unfortunately, she left before and we never saw another community matron. We got a phone call after that one left saying, ÔHeÕs had the hernia operation. You don't need to see us. Just call us if you need us.Õ That was it, so no relationship at all. The dementia specialist, the Parkinson's nurse, they were great. The CPN, he was good. He would get the psychiatric doctor to come here rather than me trying to get Lawrence into a car to get, things like that make a heck of a difference because you have an appointment and if you can't get him out of the house, what do you do? So then you didn't attend and not a didn't attend because you didn't want to attend, you couldn't get him up. Downfall. If youÕve got any doubts about the relationship with the carers that you have employed, get rid of them in the probation period. Don't take their word for it that itÕs going to change because once the probation period is over, they don't care anymore.

Rachel: Proactive management.

David: And seek advice. Don't be shy, be brave, seek advice, get some advice coming in.

Sato: And it's hard because you're usually tired, because you're on alert even when you're asleep, you're alert to any noise, to anything that's going on. You're not really sleeping.
David: So the IAG community then? So Independent Living Group partner organisation, Smart Base Ltd, we have the fantastic ILG support that provide our legal advice that Rachel heads up. She's brilliant. And we have something called the ILG community and we have a steering group. So what do you know of the ILG Community Steering Group?

Sato: Well, I first heard about the ILG Community Group from you, David and you twisted my arm and said, you've got to go on because your experience with employing people through a personal health budget, same issues as DP and also the fight that I had later with the CCG on the budget, you felt that while although Lawrence has now died the experience I had is lived experience and could be of some help to other people who may be facing those difficulties. And actually I say you twisted my arm, you didn't really because I felt so strongly that this is such an important thing. There is no voice out there for independent employers of, they call them PAÕs, I find that a bit weird, I used to always call mine PCAÕs, personal care assistants because personal assistant, you think of a chief executive and in some business or whatever.

David: And I think we have to be open to different terminologies. I will say that here because I've been challenged to views in different terms and I think it's what it means to you and what you mean by it.

Sato: So I'm just going to call them carers. Most of them all carers, some of them are a bit iffy but real carers, it comes from the heart, it's nothing about their training, it's nothing about the job they're in, it's about what's coming out of them and you cannot do a caring job properly without having it in your heart and those are the people that are worth their weight in gold. And I was lucky enough to have several. The ILG steering group is great in that up until this point in my understanding is there is not a single organisation representing people who are employing carers for whatever reason throughout the UK who has a seat at the table. You've got agencies that are represented in government committees, you've got nursing homes and care homes sitting at the table, but you haven't got independent employers. And that is why I felt the ILG community could and should become a strong, coherent group of people with a voice that could then go to the table of Parliament or anywhere else, where theyÕre discussing even just social care or social health care. And at the moment is it we're a steering group. As we grow, we hope to sort of have people come forward and then we'll go for an election. You know, not an election. People will say, I would like so-and-so to be on that group. Then we'll have a proper committee as opposed to a steering group. At the moment, we're just setting the terms of reference and we've already got a seat on the Department of Health's Adult Social Care Working Group. A working advisory group and we're going to different other groups and explaining what the ILG is, but it's a start and for me, if we don't have a voice, I don't want the ILG to be just a talking shop, just shoulders for people to have a moan or a I've got a question. I think it should be there to make a stand politically and influence any policy that is done. 

David: I would add to that, Sato, I think you're absolutely right and that's what's so exciting about working with you and other members of the steering group who we're going to interview as part of the season, which is fantastic. And you've really expressed it all throughout this, this interview, actually, this, this podcast. And I thank you for that. I really do. Thank you so much. And I think the other element of the ILG steering group, the membership is growing, so we'll put a link on all of these podcasts. People cab jump on if they are listening to this, whether you're already an employer thinking about doing it because one of the most rewarding things for me in the last 6 to 12 months that we've been doing is watching that Facebook group grow and the actual engagement happen.

Sato: The questions and people answering and sharing information. Brilliant!

Rachel: That's something that for me just really is so important. I've been advising individual employers for so long and through all of those years, what we find is that there are common problems that come up again and again and again and again and I've always thought, why don't people know? Why aren't they told that there are people that you can go to for more help and pointed in the right direction? And it's such a frustration and us having this opportunity to get more information out there to share this with individual employees and let them know that there is a network, that there is a system that they can turn to for further guidance is just incredible. And just I'm so pleased.

David: Yeah, absolutely.

Sato: Well, I would like them to thank the ILG group. I mean, the Independent Living Group, not the community. So having the idea is an innovative idea and the backlash of people thinking that there's a vested interest in this, I would say join the community and you'll see actually there is no intrusion, there's no input from the insurers in any way, shape or form. We can go to them, we can go to somebody else, they do not tell us how to do things. We're completely independent and I would like to say thank you to the ILG for making available templates, giving certain advice, answering some of the questions on the Facebook, but at no point ever promoting themselves I think that that shows a lot of generosity that it's seldom found, sorry to say in business, but it is and it's done in the right spirit and out of things being done from the right spirit can only go well. So thank you.

David: Thank you. What a great way to end, I donÕt think we could follow it.

Sato: Can I take the handcuffs off now?