Rachel: Hi there. My name is Rachel Harkin. I'm the head of Employment Advice Services at Independent Living Group trading as 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 whoÕs 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. Jade, thank you for inviting us into your home. Really appreciate it. It's really good to see you and meet you in person after all the meetings we've had and conversations we've had via the ILG community. So let's just get right into it, if that's okay. Your introduction to Direct Payments, we're interested in. First time you heard about direct payments, can you remember?

Jade: So my memory on this is quite fuzzy, but I think I had some friends who had got direct payments, so I knew what a PA was vaguely, but I didn't understand much more than that. I do remember phoning Social Services to ask for an assessment and then going online to try and find more information on direct payments and struggling to find anything at all. It was really difficult. 

David: So were you in receipt of services? Was there anything you really felt you need? You know, you needed some support. Was there a social worker involved in your world at that time?

Jade: No. So what had happened was I've been in work up until that point. I had finished university, so my condition started when I was 15, and it was a countdown of each year, got a bit more severe and more difficult. I had just about scraped through university and finished that and went into the workplace. I started full time and very quickly had to go to four days, then on to three days and was struggling with that. Then I realised if I couldn't even cope with three days, I just couldn't stay in the workplace. So I had to stop working. And that was a really difficult year. No one thinks I want to not be able to work in my mid-twenties at that time. I get a bit lost on my ages. No one wants that in life and so that was a really dark year where I felt I don't know what to do with my life. I feel like I'veÉfailed is a strong word, but you do feel what is the point of me now? IÕve just got to sit here doing nothing. That isn't me. I like to do things, but it was balancing my condition with the doing. So at that point I'd been in touch with social services in terms of having an occupational therapist assessment and they'd given me some equipment and things, but I was struggling and I think the main thing was my mum was trying to be my PA in a way, not in a formal way, and it just wasn't working. All her annual leave was going on my doctors appointments, and other than that, I wasn't really leaving the house because I couldn't. I was at that time a wheelchair user, but I couldn't independently get it in and out the car by myself, so I was just mostly trapped in my house doing nothing. Any voluntary work that I did, I had to drag Mum along as well and at that point, nothing was online. Everything was in person. So I was just finding it more and more difficult and so I thought if I had some help, I'd be able to rejoin society a little bit more. And so it went from there.

David: Right. And your friend had mentioned direct payments and you thought, okay, this sounds like a solution, something that might fit in with my life and work for me. So what was your next step then? How did you explore that? Did you think there was enough information out there for you? 

Jade: No, not at all. I asked for the assessment, I knew that much from Google, but I wanted to know more. I wanted to know what I could ask for, just real basic things. I understood that direct payment could lead to a PA that was literally a I knew nothing of how that was made up, what assessment would take place, and trying to find that information. What I found was there were websites out there that had very basic information on what a direct payment was, and they would often have these little lists of like, what can a direct payment cover? And it would say things like art classes, respite care, and just very vague lists. And that all sounded very lovely, but when I was getting to the assessment and discussing things to my social worker, it was very clear that those lists were very old and were not relating to the world of direct payments at that time had become, I suppose. [cat meows] Sorry.

David: DonÕt worry. I should mention at this time. we've got lots of cats with us. How many cats do we have here today? 

Jade: Three cats, and theyÕve all decided to come and join us, vocally as well so IÕm very sorry.

David: WeÕll pop their names on the podcast so they know whoÕs contributing. 

Jade: Yeah, they're very nosey, unfortunately. So at that time also one of the things I was doing was blogging quite a lot because it was something I could do from home. I didn't need help to do it. And so as I went through the process of having the assessment, I tried to blog what was happening to try and provide that information for the next lot of people coming. Not that my blog had a particularly wide reach, but I was just trying, hoping other people searching for direct payment might come across it and be able to gain from that experience but I was learning as I was going completely. And the way it worked for me is at that time, the support in my area wasn't that bad. We had a really good charitable organisation that provided advocacy. So the assessment went okay, and we had some back and forth and I'd got a budget I was happy with, but the things I was asking for were getting a quite stern ÔNo, that's not what direct payments are forÕ and I was trying to gain the information to almost challenge her with and it just wasn't forthcoming online and that's when I was asking for policies. I was even putting in freedom of information request to the council saying, What is your policy on this? I just assumed there must be some kind of framework that otherwise it just feels like they're making it up as they go along.

David: It felt very random. 

Jade: It did. 

David: What kind of things were you asking for, do you remember? 

Jade: I was asking for certain therapies to be included and I was getting very much Ôthat's not what direct payments are for, direct payments are for PAÕsÕ and I was saying, this therapy that I'm asking for meets every single one of my eligible needs and from what I had read, which was very little at the time, I thought it made quite a clear case that it should be looked at and because I'd just finished work at the time, I still have quite a few contacts out in the world in disability because that kind of related to my work as well and so I put out an email to say does anyone know anything about this? I had so little supply I had to just email random people and I'd also been provided someone that was supposed to be independent from the council to write my support plan and I was asking the same questions to this person and getting exactly the same answer. ÔNo, that is not what the money is there for.Õ So I was trying to use what services were available to me through the council and just being completely stonewalled, which is when I then went to emailing random people and I managed to get a response from this really lovely man who actually set up direct payments in Suffolk. It was just a friend of a friend link, didn't know him, and he came back with the most fantastic answer, giving me everything I was looking for, he just clearly spelled out, Ôthis is the law, this is what it says.Õ 

David: Do you remember his name? 

Jade: Yeah, Christopher Whetton. 

David: LetÕs give him a shout out, absolutely. 

Jade: He is now the CEO of Essex Carer's Support Network. He's a really good person. I've come in contact with him again recently and he's still fighting the good fight against councils. He gave me this fantastic response and I was able to go back to my social worker and same time I must have got the advocate as well, who was very good. The next meeting I had with my social worker was with the advocate, and the whole tone changed completely. There was no more ÔnoÕ there was, ÔOkay, let's look at it. Here's what you need to do to have that put in place. You need to put evidence together like you.Õ She started to tell me me the actual process, there had been none of that before so she explained for them look at this, I needed to gather evidence from, for example, my GP, from the therapist that I wanted, even for myself explaining how it would meet my eligible needs and they would put that to what they called the panel. That happened and was approved immediately and it was just knowing the right words to put that I had no idea at that time, just changed everything immediately and that's still in place in my plan now. So yeah, it made a massive difference just knowing.

David: I have to say, Jade, I've known you for a while now and spoken to you but we had this experience where we spoke to others already this morning and it's inspirational to hear that, I'm sure, Rachel, you'd say the same that you've mentioned that you were blogging off your own back, in fact that you've reached out for an advocate, that you were emailing different people, you were so proactive. It's a double edged sword. I'm thinking isn't a shame you have to put that much effort to get what you're entitled to but what an incredible thing you've done there and that genuinely is inspirational. So it took some work and had you not put that work in or you perhaps didn't have the time, you weren't inclined to do that, do you feel that you have been offered something substandard then? 

Jade: Absolutely and that actually reminds me, you saying that that when I initially asked for an advocate, I was knocked back and the fact that I could, I suppose, articulate myself but just being able to form a sentence doesn't mean anything. One, if you haven't got the knowledge behind it and to this day, you know, I don't fully understand the Care Act so that to me is completely different to people don't understand the pain and fatigue that you can have with conditions like this and just because one day I can speak doesn't mean they say how much effort that takes and that I get crammed down very quickly, so when I have these battles with services, it gets to a point where I just can't anymore. I just run out of energy and steam and that's the side people don't often see when they're just looking at someone on paper and I just find it so frustrating because I think anyone getting a direct payment should be entitled to an advocate. You shouldn't have to tick a box, unless you wrote the Care Act yourself, everyone needs access to someone who understands the Care Act. Because often they'll say to you, have you got a friend or family that can do it for you? Yes, I have friends and family. Do they know the Care Act? No. So what help are they? That's something I find quite frustrating. 

David: Sure. Plus, you already described that your mum had that up to that point was doing everything for you. So what you would have been doing would then be plowing even more pressure on that relationship by asking her can you do more for me? 

Jade: Yeah. And I think that's something I really strongly believe in, that anyone caring for someone should consent both ways. Both should be in agreement with that. No one should be forced to be doing that. I say that because I know lots of my friends have had experiences where social services have said things like, Well, your child should be doing that for you, your husband should be doing that for you. And I just find that very frustrating because if you want to have a normal relationship with that person, that should be fine too, there shouldn't be this pressure.

David: It's interesting because I know from some reading I've been doing in the last few months around the Care Act and statutory guidance, there's a lot of myth busting and itÕs something the ILG community talks about, myth busting and one of them is this idea that any support you access via informal care is the way in which is accounted for when your needs are assessed and actually what a local authority should be doing according to the Care Act is assessing someone's universal global needs and identifying which needs are being met, some by informal care and then the ones that are eligible for support and those that are met or unmet and the idea is that if someone might have a lot of informal care, so the council then doesn't have a duty necessarily to meet those needs at that time. But the idea is that the assessment is supposed to be broad enough that were, for example, that informal care to suddenly stop, which there are of course reasons why that might happen, that the council would have an assessment and be ready to step in, but so we know for a fact and your testimony is quite evident that that doesn't happen. And I don't know that there's always a resource for that to happen and probably not the understanding for that to happen, which is quite frightening really. When you start to sort of scratch away and wonder about what's happening.

Jade: Even just on a very simple level, there is an expectation that if someone lives with you, I mean even though they accepted that I didn't want my mum to be my PA anymore, I wanted my own PA, there was still an expectation, for example, that my mum will deal with the cleaning and the washing. They won't put that into my plan because she exists and I just find it very unfair. I'm not saying I should have a PA to do all of it, but I would like to do what I would have been able to do. I don't want to have to rely on someone else. I just think it's unfair. 

David: Yeah, and that's another one as well. This idea that where a funding body might say we don't do cleaning, we don't put that, but that actually again, it's about looking at the individual and their wellbeing and one of them is to maintain a habitable home, I think thatÕs the terminology and of course why should you automatically rather somebody else do that for you? And if for that for you in your situation, that's a way of achieving wellbeing for you then we need to strive for a better understanding of the legislation that underpins it. So youÕve had an assessment and what support did you think was available for you then, once a direct payment in place? You've got the advocate, you've got as far as getting that far, in terms of practical support and in terms of Jade the employer of PAÕs, what was available to you or what happened there?

Jade: So at that time things have changed very much in this area, which is sad. At that time there was fantastic support in place. It was only for a very short time of me being an employer, that the same charity that provided the advocate also provided employment advice. So within that first year of my being employer, they helped me advertise the job. They helped me go through applicants. They helped me back an interview room, and they said that come along if they if I wanted them to, they provided the contract. And once I had a PA, they were on hand if I ever needed anyÉif you needed an awkward conversation, I could have a one-on-one. They were on hand to come and sit and be that sort of middle ground person. It was fantastic. One day I went to phone them and their line had just been cut off, and that's how I found out that theyÕd been defunded and there was never been any support like that since, in nine years. There is another organisation has got the employment contract but it's nowhere to the level that that was in place. There is nowhere I can go to get independent, correct advice at the moment and I find that quite frustrating. And it's not just the employment advice, it's the direct payment side advice sometimes, you know, you still have a yearly review. Your social worker still sometimes tells you things that you think is that right? And there's just nothing for me to go to and say, what does the character say on that or what do you think? Do you think this is right? And I find that really hard.

David: And quite frightening, is it? Because you don't want to challenge? That's something we often hear.

Jade: I think until someone has been in this position, they can't understand the fear that's involved with every review. There are such massive power dynamics there and so, in another situation, it's much easier to fight back and know your rights, in this situation, it feels like this is the person that could rip my world apart in one email. And that has happened even last year I had an email from a social worker following a review saying, ÔI've decided I'm cutting half your budget and I don't believe it should have ever been in place. Oh, and I'm off on annual leave now, so we'll discuss it in two weeks.Õ And so I went back to her straight away saying, I don't understand and it was going back to that same therapy as well that I discussed before. That was one of the things she didn't believe should ever have been in place and I said, but all the evidence was there, it went panel, I don't understand. Plus, queried a lot of the other things she said and so for those two weeks, I had a massive flare-up of my condition. My condition responds quite strongly to stress. I was in bed for two weeks feeling absolutely awful. After two weeks she responded to me, oh, I didn't check the evidence. I didn't I didn't read the file. I've read it now and I can see it's all there. Everything's fine. And, you know, the email I wanted to send back was not polite. I had to refrain, but I don't think she got how much that impacted me, you know? And I just think she thinks, oh, she's fine, she'll cope. But that's the kind of thing that go on. 

David: That's really upsetting. How many PAÕs do you tend to employ? 

Jade: So I have 2 a time. One is my main PA and I have a backup emergency PA, that's the theory. Or she does some minor hours. 

David: And when things were good and there was good access to direct payment support, did anyone talk to you about the insurance side and the legal advice that was available to you? Was that was that made part of the set up for you? 

Jade: Yeah, I do think my social worker told me about it at the time, and so did the support organisation that was in place, but since then no one has mentioned it or checked anything.

David: So you are insured and you know now, but the reason I mentioned it because all the insurance policies in the market for the payment recipients tend to come with legal advice built in, but I do think there's an issue of people understanding and knowing that, particularly because the best support works by having, I think something local on the ground who will explain and talk you through what's being funded, what's available, so you know that you've got ideally access to someone locally you can help with recruitment and do those hands on things. 

Rachel: It's that helping hand, because often when we are advising, we would suggest maybe a meeting, a chat with PA and like you said earlier, you want somebody to help you through that. That in itself can be an intimidating thing and this is you trying to tell somebody that that you are actually very reliant on, ÔI'm not happy with the way you're dealing with some things.Õ That's a difficult thing to achieve.

Jade: It can be so awkward, yeah. I mean, I've been quite lucky with my PAÕs that nothing major has happened. There's been nothing legal I've needed help with. I do find that day to day management of someone in your home very difficult and it's interesting because in the workplace I was a manager and it's so different and my friend who lives very close by was a very high up manager in an insurance company actually, ran whole departments and she says exactly the same. So I don't think it matters how confident you are, what kind of person you are. When you're relying on someone and you need to have an awkward chat with them, even just something really simple, like, ÔOh, do you mind not doing that next time,Õ can become really big and it can build up. And I'm quite an anxious person, I'm not great at speaking to people to say, Ôcan you not do this,Õ I do tend to let things go. But one of my first experiences with a PA, I decided to get the confidence to speak to her, sheÕd been on her phone a lot. At the time she had a family member in hospital so I had said it was perfectly fine to have your phone on and answer calls. I'm not mean, I understand life happens however that was going above and beyond and this particular day she had taken three 20 minute phone calls that were personal in nature, not not urgent at all and so by the end of the day I was I like IÕve just got to say something like, can you just reduce those please? So I asked to have a little chat and sat down and said, do you just mind not, not having those? Well, I didn't expect her the approach for her to take was to completely deny it. I don't even know what I expected to be honest, there was an outright denial. ÔI have not been taking any phone callsÕ and it's quite tricky because when someone denies reality, where do you go with that? I think I kind of was like, you were. No, I wasn't. I just wasn't really sure what to say, so I just said, well, you are, but can you just cut them down? I understand youÕve got to take personal calls. She just went ballistic. She just started shouting at me, ÔHow dare you accuse me of such a thing?Õ And then stormed off shelf, slammed the door, that was it. And this was the last I saw her for the weekend as well. So all weekend, I'm thinking, was that her quitting? I don't know and she was due in on the Monday. And like I said before, my condition responds to stress, so by Monday I was having a big flare up because that kind of thing just builds on me. So I was actually really ill when she came in on the Monday and she just came in like nothing happened completely. And I was too ill to say anything and then for that first couple of days when I was recovering, I just didn't say anything because I was too ill and then by the time I was better, I couldn't be like, four days agoÉit was just too awkward, so we just never mentioned it again. However, she stopped taking the calls, so she knew she was doing it. She just took that outright denial but that's what happens. How do you say to someone, can you not do that? If they're about to give you personal care in 20 minutes or if they're about to drive you to a doctor's appointment is so awkward.

David: Rachel, from a legal advice perspective, had Jade contacted ILG Support that weekend, how might the conversation go? 

Rachel: I would be supporting her in her decision. The way she handled the original conversation was absolutely the way to do it, is to be open and honest with your PA. If there's something that theyÕre doing that you're not happy with, you talk to them and I would probably judge your reaction to it, Jade, and see how you felt about the fact that she's then blown up at you because that's conduct which is unacceptable in any work scenario and I would argue even more so in your home. Those circumstances are not acceptable so if you'd called me at that point, we would be considering potentially disciplinary sanctions. But then as Jade was talking, it sort of strikes me it's all well and good me having these plans from this employment law perspective, but the reality is she wasn't well enough to handle it and that's what makes it practically really difficult just to follow the advice from somebody youÕre talking to over the phone, doesn't it? 

Jade: It does. I feel the exact same way you just said. If a friend had phoned me saying that same thing and I've been saying you need to give her a written warning, you know, you need to do something about that. That's not acceptable. When you're in that position and that person knows you completely rely on them and they know it will take weeks to get another PA in place and to train them up, you just feel stuck and it can lead you putting up with things that you wouldn't in other situations. I'm in a really good position now, I've had some really good PAÕs lately but IÕve put up with some really awful PAÕs because of that. And I know I do it. It's just really difficul once you get yourself into that position.

Rachel: And is recruitment a problem? Is that something that stops you from pushing PAÕs if you think can actually getting somebody to replace them is going to be a challenge anyway?

Jade: Yeah, most times I usually do get someone, but it takes around six weeks for me to do so and I have a six week notice period in my contract and that tends to be how long it takes to recruit, find someone and get them in a position. So that's a long time to go without someone. If someone walks off shift or if you say it's not working, you need to go. And I think that always causes that problem that you're just too scared to get into that position. 

Rachel: Yeah, and it's not always that easy to have backup workers who are ready to just turn up and fill in. 

Jade: Absolutely not, even though I try to have that situation. The councils are very strong in telling people to have contingency plans and in theory, yes, obviously everyone should have contingency. But as I say to my social worker, do you know someone sitting at home 24/7, doing nothing that would come in? Often PAÕs if they're ill, will cancel 15, 20 minutes before a shift starts. Who do you know sitting there that can just go, yeah, no problem. I'll be there in 20 minutes. Life doesn't work that way. And even with some notice, if you need holiday cover, who's just suddenly got two weeks free? It's really difficult in theory to have that imposition. I am lucky, I have got family that can step in if it's really bad. But I also think sometimes I've had PAÕs in the past that have known that and the same PAÕs I've had problems with have often cancelled at the last minute knowing I've got emergency care and that's really unfair as well, when you can't rely on someone and they shouldn't have that expectation that person's available either, with that PA I used to wake up every day and check my phone first thing. Are they coming in or not? I haven't had to do that with my last 2 PAÕs because I trust them. It doesn't mean they're not ever unwell, but I trust they're really unwell if they can't come in, they're not going to let me down because they can't be bothered to get up, whereas others have done that. 

David: And do you think that you would access support in a situation like that now, or do you think that you'd still be in a position where you might manage it yourself, or at what point for Jade, it does vary for different people, would you pick up the phone, do you you think? 

Jade: I don't know, I probably under-utilise the legal help quite a lot and I see online actually other employers will phone the insurance company at any issue and I've never done it. I don't think IÕve ever actually phoned for legal help. I've always had in my mind it was more, things are really bad. I never thought about it at the time of just that day to day management thing. And I also, as a manager, want to make my own decision I know they're not telling you what to do, but I tend to be quite laid back as a manager, I get on well with my PAÕs. But I think I probably should use that service more when things arenÕt going well.

David: I think judge for yourself, but I think knowing it's there. I mean, Rachel will speak about the day to day management of the team, like you did an example you gave but I do always remind people that the helplines there to talk through what you're planning to do, what happens if it goes wrong and the guys will give you that advice.

Rahcel: One thing to be aware of is that when it comes to the kind of advice that we offer, my approach to it is that we are there to give you some guidance, to certainly tell you what the law is but ultimately the decision is yours. So I wouldnÕt want I wouldn't want anybody to feel like if I call these people, I have to do what they say. There is only one possible risk for people to be aware of if they're not following the advice of whomever their helpline might be, the only possible risk is that if the decision making results in a detriment to the worker and you later get sued because of it, there is potential that the insurance company wouldn't pick up any legal costs to defend it because they'd be saying, well, you found himself in this situation because you didn't follow the helplines advice. But are talking about few and far in between where those cases get that far. We take so many calls on a daily basis and very, very, very few of them get to the point where weÕre worrying about legal proceedings, most of the calls, it's guidance on all sorts of different points and we always make sure that any individuals who are covering the helpline, if you've got legal qualifications, background or HR expertise, so that that means that we can help you with just day to day management bits and pieces as well as some like technical points of law. So yeah, I think ultimately my point is to say, don't feel like you have to follow the advice. It's just another resource. If you don't want to, it's your choice always. You're the employer. 

Jade: That sounds really good. I think sometimes it's a case of knowing what you'd say. Not that I'm an expert, but I meant in that situation that I just gave, I know I should have done things differently I just couldn't at the time and so I suppose I was just gave in. 

Rachel: Not necessarily because the relationship played out. She stayed working for you, something must have been working for you and taking formal action in that moment, it may have been justified, but I think we all, as employers, and managers of people have to be thinking about the long game as well.

David: And actually, it's really important what you're describing to us there about how it felt and I know, Jade, this has been something we talked about before that you've mentioned and I think it's really important. And that's why I kind of with Rachel and I have talked. You're quite keen, Rachel, for the team to hear these conversations because it's so important you can't disregard that element and how we collectively so thinking of the ILG community and the steering group work, but how we collectively crack that nut in terms of training, raising awareness because it does inflect how you manage every situation and as you say and in a general work setting, it's unlikely to be as prevalent how an individual feels because they're all kind of separate or be in a position to.

Rachel: You know, so often with the way case law flows in employment is that there is a recognition of this circumstances of an employer. So one of the principles that when we look at whether or not a dismissal is fair is the employment rights act actually references the size and administrative resources of the employer so it's already there recognising that different employers are different and it takes into account all of the circumstances of the case. So you can have one case, let's say an office worker who's been swearing and that's a fair dismissal, but swearing going on down on a dockyard where that everyday language wouldn't be a fair dismissal because how can you penalise somebody for something you're tolerating every day anyway? The nature of the workplace makes a difference. And this is what I'm really keen to make sure any advisers, certainly within our remit, on the legal advice line but also anybody who works in this sector really takes the time to put themselves in your shoes because your circumstances do make the difference.

Jade: That's really interesting and actually that brings up some thoughts that I have struggled with in the past as an employer, and that's navigating PA's own health issues. Now I would be the first person in any other workplace, if someone's got a disability to be, that employer needs to make reasonable adjustments. They need to do that. However, as a PA, it can be really difficult because the only reason I have a PA is because I'm physically unable to do certain tasks. And I've had PAÕs who aren't necessarily got disabilities that have been there's been quite a few situations where they haven't disclosed certain health issues to me, and then it's become apparent they do have a bad back or whatever, and that can be really difficult because as an employer, I can't make those adjustments. I would in another workplace, I need that person to do those physical tasks for me. I also don't want to discriminate against anyone or make anyone's life difficult. So it's interesting you say it takes into account the employer. So what would happen in that situation? Would there be an understanding?

Rachel: There certainly should be. The difficulty I find and I actually wrote my dissertation on this very subject that this question of disability discrimination rights and supporting employees is all well and good until you're looking at a very vulnerable employer and many, many cases, individual employers fall into that description, in my view. And suddenly that balance doesn't feel quite equal, but one of the key points I think you've mentioned adjustments when you've got a worker who has a disability, the word that goes before that is reasonable. And surely that should take into account all of the circumstances, whether or not there's a cost implication for giving an aid or whether or not it's possible to change somebody's role, you wouldn't want to take on a PA who is required to do lots of physical work and then suddenly adjust everything to the point where theyÕre sat down all day. If that's not going to allow them to fulfill the role with you at all, then it's not a reasonable adjustment to make.

Jade: And I always make it very clear in my job description that there are physical aspects to the roles and quite heavy lifting. I always ask in interview, not what their conditions are, I understand I can't do that, but I ask if there are any adjustments that need to be made to the role. If there's anything they can't do, they always say ÔNo, no, it's absolutely fine.Õ And then the issue comes up once they're employed and it's been a pattern that I've had and in most cases we've been able to manage that. There was one particular PA that had a really bad back. She didn't tell me, and it was really affecting her work because that is what I need. That's a massive aspect of the job and I don't have a team of PAÕs, so I can't say, Don't worry, that person will do it. I'm relying on that person and I think she realised that and mutually she left. I mean, I didn't tell her to leave. She decided, she realised that she wasn't giving me what I needed, but I had to really suffer in that year she was there, I was doing things, lifting things I knew I shouldnÕt. I can't lift things on my back, but I was doing it and dislocating joints. It was a really tough year. And I just felt I couldn't say, Oh, youÕve got a bad back, you're fired. That doesn't feel right either. So it was really difficult.

Rahcel: This is another, this starts making me think about how in my view, further support is needed from the funding bodies generally to provide for occupational health support. So it's been a permanent challenge whether we've got PAÕs who are in long term sickness absence or those even with short term problems like you've just been describing, not necessarily somebody so debilitated herself, she can't work at all but in the meantime, while you're trying to figure that out, you're the one suffering. This is where occupational health specialists would really be able to get to the bottom of it because they don't just look at the health condition of the PA. That's what a doctor does. That's what the GP does. They have a look at their health condition and make a diagnosis, they're not worried about you in the slightest. That's not what they're there to do. Occupational health, on the other hand, do and they will look at the work circumstances and blend the two and provide their opinions on the back of that. Now what we tend to find is that those kind of reports are extraordinary useful if certainly if not necessary before we go ahead with a medical capability dismissal. But wouldn't it be wonderful if rather than it being quite that extreme that we could actually have that kind of support at an earlier stage as soon, as you discover that you've got a PA, who is saying, ooh, I can't fulfill elements of my role and you're not so certain whether or not they have a disability or not. Wouldn't it be great if we could tap into this expert's guidance, really? 

Jade: And you don't know when those issues are going to arise either. I had a really my last PA who was absolutely fantastic, had a car accident, and she tried her absolute best. This isn't a negative on her, but that was really difficult to navigate for exactly the same reasons. I don't know how long it would last, and she did get better and it was okay, but in those few months it was really difficult. And there is no support to say, What do I do here? 

David: It's so subjective, isn't it? This is such a subjective element. I know, Rachel, that you and I talked about over the years that some of these cases without occupational health they'll go on and on and on, and then we'll have this issue that nobody really wants to get hold of or perhaps cannot can't really get hold of it.

Rachel: And the shame of it is that it really doesn't cost an arm and a leg. It doesn't have to cost a huge amount of money. If funding bodies were more open minded to saying, yeah, we recognise that there is a sticking point here, that this relationship with your PA isn't working out and provide the funds to have those reports done, certainly organisations like ours, we would be able to point you in the right direction, find the right people who can give you the support that you need. And it doesn't have to cost a fortune, but youÕre finding solutions quicker. I would just love to see that happen. 

David: Something to revisit, isn't it? Jade, so much you've said today that's really, really interesting to me, but in terms of the ILG steering group and the community, it was through the social care futures event I think?

Jade: Yeah. So taking a bit of a step back, before even that point, my local council asked for some people to come forward, they were looking to improve direct payments and they wanted to put a little group of people together to get involved. Up until that point, I hadn't been involved with any other employers. I felt very alone, to be honest in the world as an employer. And it was going to those meetings that made me realise all the things I struggle with and say are wrong about the system. And all the things I say are right about the system. They were saying it too, it wasn't just me, and these meetings started off in person and then the pandemic hit and they all went online, which was interesting because I'd been asking them before that if it was possible to make them more accessible and go online, they said, No, no, that's not possible. Suddenly the next meeting was entirely online, so it was possible. But anyway, they did their best. It's just interesting how much things have changed in the last couple of years in that way. By going to those meetings, that got me interested in the wider picture of direct payments. And that's when I think you were at a meeting, I can't actually quite remember. You were talking about ILG community and was anyone interested? And I think I said I was and it just sort of went from there. 
David: Absolutely and the steering group, you've been such a big part of that steering group and the work we're doing to bring it all together and you're committed to it. Exactly what you just described, the experience you had in Essex, exactly what we're trying to achieve is to bring individual employers together, recognising that there isn't a preexisting cohesive group of people, there are individuals struggling in much the way you described. We're doing our best to give really good support to those people where we have a connection, see them via ILG support but we really want to enhance that experience so people can ask those questions and who knows what we can do in terms of helping and supporting other employers to feel they're not alone and they can ask those questions and they can access the support they need. 

Jade: Yeah, I think being involved has shown what a mixed bag it is across the country, that going to some of these regional meetings and they've got the most fantastic support and advisors who care. And then you've got other aspects of the country that have got nothing and it just can't be right. There has to be at least a minimum an expectation of support. 

Rachel: We have to be very cautious in the way we advise actually, because we can't assume that you will have a local support team who can help you to attend a meeting in the likes. We can't assume that that's the case. We always suggest they contact the local authority and see if they do have a support team who can help them get through things like that but the days of assuming that thatÕs the case, theyÕre gone.

Jade: When you say support, I understand the employment support and I believe every council's meant to have some kind of contract, is there meant to be an equivalent for direct payments? Is that support worker supposed to be able to tell you the same things about direct payments, if that makes sense?

David: The trouble is the Care Act statutory guidance is a little bit wooly and says local authorities must make you aware of your employment responsibilities and point you to information, so it lets local authorities off the hook a little bit, thus you what you see out there is there are some local authorities who take that literally and more signpost and not much else. And there are other local authorities who do a lot more and more or contracts and perhaps a local user led organisation or different organisation or have a really well-resourced in-house direct payments team, who see the job of direct payments support. Another issue is if you say, is there a direct payments team in a local authority, you will have one local authority saying yes, our direct payment teams over there, theyÕre basically finance and they create payments and they do financial monitoring. And you have another local authority say, oh, we have a finance direct payments team, but we also have a direct payment support team who work within care management and come out and meet with you when youÕre referred to direct payments and do all of those things. So all of that mix without any actual framework to say this is what you must have beyond, you must make people aware of information, is quite loose. So I think there's an argument to be had. One of the things the steering group one is looking at is trying to map that out. As Rache; just said because they will talk to any one who's accessing support and at that moment, wonÕt don't necessarily know how that makes what they've got available to them.

Rachel: And there have been times where we've been genuinely worried for the caller and have literally called around their local area trying to find somebody who can step in and help. If they've certainly been abandoned and they're particularly vulnerable, let's say, genuinely worries me. So I've done that a few times, even calling around David and saying, who do you know in this area? Let's get somebody on this. 

David: So for me, one of the things about the ILG community is let's create a space where everyone can at least come together, albeit virtually. And then secondly, the stuff, Jade, I'm going to just plug it, some of the stuff youÕve been doing is incredible. The parliamentary committee, remind me?

Jade: So it was committee on the workforce in the public sector so it's quite a general overview. But they had a session where I was invited along to talk about direct payments and employers.

David: ItÕs still live as well, isnÕt it? IÕm going to put the link to this podcast because anyone listening you did really, really well. You were involved in the proletary with people from represented police force and all sorts of organisations and they kept going back to you because you were making your point and making it really, really well, which is great. So don't play it down because it was brilliant and great that you were doing it from the community but what I found interesting was it was new to them, wasnÕt it? 

Jade: Yeah, I mean, at one point I made a point about people not knowing what PAÕs are, and they said, well, can you tell us what a PA is then? We are at that level then. And that's not me expecting everyone to know but I just would of thought that Lords and Ladies representing us in Parliament would know what a personal assistant was at the very basic and they didnÕt. 

David: And that's the two ends of the ILG who are trying influence where we can provide a conduit in over contacts and networks to get you in the right place to be able to represent a bigger group, but also on a micro-level to a place where if you were in that situation like you found yourself on that Friday, that I don't know now whether you might have reached out via the community. I know there are other Facebook groups but it's a place we can go, wow, this is just happened, any thoughts? And you might get some feedback. 

Jade: Things have changed quite differently on the online. There's a lot more online support now that just wasn't there at that point. 

David: So I guess one last question I have is if you could go back to when you started at the beginning of our conversation and what you know now, what would you tell Jade eight or ten years ago, whenever it was, what would be your big piece of advice you might give to yourself?

Jade: I'm not sure. I think it would probably be to know your rights. I was trying to know them at the time and it's something I'm still trying to grasp and I'm doing training now because I no longer rely on my social worker giving me the information. I now want to know that information and tell them when I feel they're not meeting that and it just makes me feel more secure that when I can quote back, actually, this is what this guidance says. And so, just to keep learning more and more so that I can be my own advocate. I don't think it should be that way and I don't think that's how the situation should be. I think it should be very different and people should have access to very good advocates. But unfortunately, that isn't what everyone's got so you've got to advocate for yourself. So it would be to continue doing that, learning more and fight back. 

Rachel: Do you feel ultimately that direct payments have been worth that fight? 

Jade: Yeah. I say to people when I have these conversations, it sounds like having direct payments is negative and that isn't the case. Direct payments overall, then completely life changing for me. TheyÕre fantastic and by mentioning these things like there needs more support. It's just about improving the situation for everyone. It's not about saying the system doesn't work. Yeah, I think they need to be shouted about. I think they should work for more people. I think social workers should know them better because I've had social workers tell me they don't bother to set up direct payments because there's too much paperwork and I've actually just said that and until that changes, even the situation for a lot of older people, they go straight to agency care or a care home when actually direct payments might be a fantastic fit. Imagine someone with Alzheimer's having the same care every day and knowing that person. That's what direct payments could provide rather than potentially an agency. It's just about people not understanding that that's out there. So that's why we want to shout about it and something I would love to see is the government doing a whole campaign on direct payments. When I say to people, I've got a personal assistant, the response at the moment is youÕre bit posh, arenÕt you? And whilst I don't really expect the government to care on an individual level, there's a lot of unemployment in this country, there's a lot of people changing careers. They don't even know that being a PA is a possibility and one thing that's great about being a PA, there's no specific training needed. You don't need a specific qualification. You don't need specific experience. Every PA is different. So even if you apply to be a PA for one employer and you're like, Oh, this isn't for me for the next employer, you might be the perfect fit, say that person who's been a hairdresser their whole lives and thinks, this isn't for me, they might be a perfect PA, but as they don't even know that exists, howÕs that going to help? I would love to see the government doing a big campaign and push on direct payments. I also understand that the amount of people taking up direct payments is falling overall, when it should be growing so there is an issue out there. 

David: ThatÕs right, it was a King's Fund report not so long ago that identified that, which was an interesting stat to pick out, weÕll put a link to that under the podcast episode as well. Lots to go out for the ILG community. And your passion is obvious and great to hear again. Keep that up and we'll keep supporting it. Thank you so much, Jade, that's been brilliant. WeÕre looking forward to working with you moving forward, seeing where we can take it. 

Jade: Thank you very much.