Lisa shares her experience of getting into coproduction as a parent carer and the difference it can make. 

Hi. Hi. Lisa. If just want to, um, introduce yourself, um, and, uh, share with us

Your experience of coproduction. Hi. Um, I'm Lisa Kauffman

I am the treasurer and coordinator of the Barnett Parent Carer Forum. Um, I am the mother of three daughters. Um, my youngest has a diagnosis of autism and, um, mental health difficulties

I'm a lawyer by trade by by profession, Um, but had to change my, um my my ability to work changed, um, several years ago when my daughter became quite unwell when she started secondary school and wasn't able to manage the mainstream school environment well at all. And that led to a school refusal. Um, we tried everything we could in order to get her into school

We changed schools, we sought loads of advice, and we just weren't successful. And as a result of her being at home a lot, I couldn't continue with my, um, with my role in the law firm. So I had to give it up

Sadly, um, in in, in trying to find support at the time when we were going through a family crisis, I came across the the the Barnett Parent Carer Forum. thinking it was some kind of, you know, support for for parents with with teenagers with difficulties, um quickly realised that it wasn't that at all. And, um, actually, it was there to hear the voices of parent carers and Children and represent those families with the local authority

And I guess because I wasn't working and because I was hugely passionate, um, about helping families like us that were, um, struggling. Um, I got involved and started going to a few work stream meetings, particularly around social, emotional and mental health and autism. And, um, thoroughly enjoyed having the opportunity to speak out for families that, for whatever reason, were not able to do so themselves because they were too overwhelmed because English wasn't their first language or or just because they they didn't have the the time and the ability to to speak up for themselves

And the more I the more I did, the more I wanted to do. Um, and the more I got asked to do. And I think because as a forum, we are a group of of, um of people who are professional and can articulate, um, the needs of the families who who are members

Really? Well, um, we developed a really good working relationship with professionals within the local authority, and it's not always been that way. Um, it's been a real struggle to get to this point, But there are a few key people within Barnett who we work really well with and who are really supportive of of co-production and have asked us to get more and more involved in in the work that they do. So you know, as I said, start off with a few work stream meetings

Um, that then led to being asked to attend, uh, board meetings within Barnett. So the send development board meeting and partnership board meetings. And then, um, I was asked to be a parent carer representative on the board of the company that runs all the education and learning systems within Barnett

Uh, it's called Bell's Barnett Education and Learning Service. And, um, I accept it. And so I'm now a director on on the board of that company

And I guess that's kind of, you know, co-production at the highest level. Really. Um, I get the opportunity to speak to, um, key professionals

I get the opportunity to raise issues at board level, and I am really treated as if I'm an equal partner in those discussions. Um, I I never feel that I'm just there to tick a box. I always feel that they value, um, my, um, my input

And they want to hear, um, from me and, um from there for the families that that we represent. Um, we've now got to a position with with, um, Barnett that we really feel that our input is is valued. We We also have parent care representatives on the complex needs panel, and we have an equal say in the decisions as to whether, um, applications get progressed, whether e h e P s are issued and we have as much a say in those discussions and the outcome as any other professional in the room

Um, and that's the same in all of the meetings that that we attend. Um, we're very much included, and we've absolutely gone from being a thorn in their side to to equal partners. Um, that's not to say it's all wonderful

There are lots of areas where we still need to speak up and say that they're not. Then their services are not great, that there's there's gaps in the services. Um, but when we do that, we feel that they listen

Um, and I would say that that for us, the the ultimate was the recognition in, um, in the Commons recently when, um, Nadim Zhari was introducing the the green paper. And there was a a question from, um an MP in Vauxhall. I think, um, who asked what they should be doing in their local authority to, um to improve the situation for for families

Um, whilst the consultation went through and he, um he said that they could do no better than to look to, um, two boroughs, Bonnett and Islington who were doing fantastic work representing families and, um, in co-production within their boroughs that that's not an exact quote. But that was, you know, roughly what what he was suggesting. So to have the fact that our levels of coproduction, um, are being recognised, um, at the highest level is is a huge achievement, and we're really proud of that

And we will just continue to work with with the people with the professionals in Barnett to make sure that the voices of our our members and their their Children are heard, Um, in the best way that we can Mhm. Thank you. And you talk

You talk a lot about feeling valued, um, or being valued for for the for the contribution for for cop producing with people. What? What does that mean in in reality, what does that? I think, um, on a personal level, it means that the points that I put forward are, um, heard and are action, you know, it's not just paying lip service to it. They they hear what we have to say and they they take that on board and and action it

I think that that's, you know, that's that's the most important thing. Um, and you know, I think that if if we're being listened to, ultimately, you know, that's that's what matters. Um, So and I and I think also, you know, as a as a professional lawyer to to be able to go to a meeting and articulate Well, the the concerns of, um of our families, um, means a lot to me personally as well

You know, it's something I'm really passionate about. So to be able to present those views and those views be listened to is, you know, is hugely important to me as well. And thank you

And and you you talked again about being feeling that things were equal. Um, and I think often people equate that to if if you paid the same amount of money, then that's equal. But I'm I'm making a wild assumption that you're not paid the same, but it still feels equal to you so well, when I talk about equality, I'm talking about, um, our views carrying the same weight

And, um, I mentioned the complex needs panel, and that's having an equal vote. And and that's, you know, that's the equality that I'm talking about. If there's, you know, if there's other people in the room, the points that we raise and our our vote carries the same weight as everybody else and and it will be the same in, you know, Bell's board meeting that my opinion carries the same weight as the other professionals in the room

Even though you know, you've got the chief executive of education and learning in the room, and I'm just, you know, a parent. Um, but that's not how they see it in terms of, you know, financial reward. You're absolutely right

But none of us do this for financial reward. What we do it for is the knowledge that, um somewhere down the line, families will be getting a better deal because of the work that we do. And whilst the situation can't be improved for for my daughter and my family

And unfortunately, it's too late to reverse that. If on a personal level, if I know that there are other families coming through the system that will have a better time because of the work that we do as a forum, then that's, you know, that that's that's good enough for me. That's why I do it

I don't do it for the money. Definitely not. Yeah, and and And that's a whole other kind of, um, conversation that we could have

But I think it is an important thing to to to state and, um in in terms of the impact. Then you you've just said there that, you know, impact personally on you and your family. It hasn't hasn't been an issue because it was so far down the down the road for you

Um, but do you think you are having an impact for other people who, you know are in the position that you were a few years back? It is changing. Absolutely. I mean, I can think of lots of examples of kind of policy changes or pathway changes that we have fought for as a forum which have meant that, um, for other families coming through the system, it will be, um, easier

And I I mean, I can I can. Well, a couple of examples. Um, for me, something that I've always been passionate about is early intervention

Um, because if if if Children like my daughter don't get the support in school when they when they need it initially, then unfortunately, it it's just gonna lead to crisis later on. And the work that we've done with some of the teams in Barnett means that there's now a REI in schools project, um, which trains up, um, teachers and and staff within schools and and, um, gives resources and support to schools in order that they can, um, help Children at an earlier stage. Um, I was also part of, um, a team that bid for additional funding which led to the mental health support teams within Barnett

Um, and they are pretty much now in in most schools in Barnett. So again, if there are any Children kind of beginning, um, that, um, kind of pathway to needing additional support, mental health support, then then they can access that in in schools without having to wait for crisis and then not be able to get the support they need. So they they're kind of two examples, Um, another one that we fought hard for and and achieved

And that was as a direct result of the work that we did with Camhs. Um was a a self referral back into camhs within six months of discharge because so many families were really concerned that their child will be discharged from CAMHS. And then they would have to start the process again if they needed additional support

Now they've got the six month safety net where they can just pick up the phone, um, to camhs and say, you know, my child is struggling again. It's been four months, but we're not ready to be fully discharged. She needs to be seen again, and they can get themselves back into the system without having to go back to their GP and wait another two years to get back in the system

So there's there's just kind of three examples of things that we've been directly involved in. And because of the work that we have done with the local authority, there's been clear changes that I I I feel certain will make the path easier for other families. And and those are changes that wouldn't have happened

Oh, for sure. Yeah. I mean, I think I think that eventually there would have been some kind of, you know, early intervention, resilience programme

Absolutely. But, you know, we worked with Barnett to to develop that, um, and the mental health support teams. Uh, who knows whether they would have got the funding? I hope that they would have done

But, you know, our name is on that bid. You know, we we worked with them to develop a plan for what the money would be used for if if they were successful. So it was the experiences of families like ours, which which, you know, populated the decisions around the bid

Um, and certainly the final. The one that you know, the the change to the pathway and we referral. That was absolutely due to our discussions with them and the issues that we were raising and and and then the the impact on, um, you know, the people who work within the system of professionals

Um, you know, is there anything that that maybe stands out? Um in in that in terms of how they has it affected the way that they do things and behave And yeah, I think so. I think you know, when I started doing this, um, I I think that that quite a few of them saw it as, um they they had to tick the box of co-production. They had to speak to families because they were statutorily obliged to, um and if they didn't, they would be pulled up on it

But now I think that they actually very much value hearing from us, um, and that they find that their work is is easier and better having had that dialogue. So we we often find that professionals will contact us outside regular meetings just to say that they've got this idea or that idea, and they just like to run it through through us. So it isn't even just about the kind of the regular work stream meetings that we all know about and that we all attend? Um, it can often be, um, something, you know, much smaller

An idea that they've got, that they want to get parent care involvement in, just to see whether it you know, it it might. It might be worthwhile pursuing. So we've built up those relationships outside the kind of, you know, I guess the the normal roots of you know co-production and we we're about to, um, run small coproduction training a bonnet

And the the instigation came from the the other board members in in bells. So it wasn't even me that was saying it's about time. We want some more training

It actually came from them. And it wasn't something that came out of inspection or anything else. It was

No one has told them to do this, but they wanted to, um, to run some more training again because they clearly value the input that we give. And and there are other examples as well that we get invited to sit on panel interview panels, um, for key positions in Barnett and again, they don't have to do that. But I think that they really value our our thoughts in the process

And they want. They want other key people coming into bonnet to share that same vision. And I think from from an early stage, make it very clear to anyone going through the process that this is how we work in Bonnet

So I I think that they do. I think it's just become the norm. Um, I don't think that actually the they need to kind of think about it so much

I think it has become automatic, which is exactly what you want. And I should say That's not to say it's all wonderful. You know, there are There are, uh, some wonderful people with Bonnett who we work brilliantly well with There are others that that struggle with the thoughts of co-production more

And that's where we're focusing our energies to try and, um to try and have a standard level that that, you know, everybody works towards, and there is there'll still be areas of conflict. You know, whenever there is money and limited resources involved, there's always going to be pushback from them. because they have to work to budgets and they can't, you know, obviously they can't say yes to everything

So, you know, from our point of view and the point of view of our families, that's always going to be a struggle. But that doesn't mean that we can't work well with them and and try and, you know, try and reach a a a point at which we feel we're being listened to and they are listening to us, even if though we're not necessarily going to get the result we want every time we are being listened to and our and our our points are valued. And do you think in those situations um, there are times when you when you can see that you you could get the results that you wanted, um or are the or is that the barriers that are there are they is it not a realistic thing? Um, I think it will always come down to money and resources

Unfortunately, I I think that the people that I work closely with clearly have a passion for improving, um, the situation for for families and Children. And I think that they really do want to do that. But in some respects, you know, they're public servants

Their hands are tied. There is always going to be limited funding. Um, so unfortunately, there will always be cases where um even though they are actually very sympathetic to our arguments, there's not much they can do, you know? And one example at the moment is is transport, which is an area that we're working closely with them at the moment

You know, in an ideal world, no family would ever have to fight for for transport, um, for for their for their child, who's entitled to it. But in reality, if they said yes, and this isn't just with it, if they said yes to all of these cases, they, they, they they can't fund it, they can't do it. So whilst they're sympathetic to our arguments, there is a line and they can't cross that

So we just do the best we can in terms of the process and, um, the options. But of course, we appreciate that it's not gonna be yes, every time and you you again, just I'm hearing that word. How valued you feel, um, in in all of this and, um And I think, um, I suppose the question that that's going through my mind is is around

Do you think the relationship would change if if you were in a kind of paid professional role? Within that, um, is there a freedom? I think I I guess I think that's what I'm sensing again. Yeah, you're right. Because I can say what I like

No one's paying for it. Um, so, yes, I think I think that there is a truth in that. Um um, but but I think it's also knowledge

I mean, what I what I've often found is because the work that we do, um, because we're we're invited to lots of different meetings and therefore go to lots of different meetings and have, um, relationships with lots of different professionals. I often find that I go to meetings and seem to know more than the professionals in the room who understandably work in silos. They know their area of work, but they haven't had the same benefit that I've had of going to an autism work stream that morning, followed by a social, emotional and mental health

Um, works stream meeting in the afternoon. followed by a kind of bells board meeting, Uh, you know, a a coproduction meeting with with with cams, an educational psychologist discussion. There are lots of things that I'm involved in, and I often find that I go to a meeting feeling that I'm the only one with complete information, and I'm raising things that, um, that that others don't seem to know

So, hm, They do sometimes look to me and they are interested, and I don't I Whether it would change if I was paid. Or probably if I was paid, I wouldn't have that knowledge. And and so I'm I think there is

There is huge value in being not an independent because clearly, you know, I represent families, but independent of the the professionals and and the system, Um, and as long as they give us the opportunity to speak our minds, um, then then I I think that that we are equally if not more valued, irrespective of the fact that we aren't being paid for that position. And I and I think that it probably would change the situation. I think there are parameters that you have to work within

If you are paid. Unfortunately, that's just how it works. And we have the freedom to say what we like

Go to what we like. Um, and and, uh, yeah, that probably would get lost. Um, I don't know

It's it's hard to tell. I definitely think that we are at a huge advantage in that we get to dip in and dip out of lots of different areas, and we bring all of that knowledge to the table and paid professionals don't because they have to work within the remit of their job. Um, and I think that that would, you know, that would change

So yeah, I think that's it. It probably is an advantage. Do you think there's potentially some learning in that for for the way that the boundaries of the silos, the boundaries, whatever you want to call them? I don't think there's ever one key meeting that I go to where I don't, um, say how frustrated I am that, um, that they don't have the same knowledge that I have or the breadth of knowledge that I have and how, um, it seems utterly ridiculous that the volunteer in the room seems to have more complete information than the rest of them, and I say it and they recognise it

But I guess, as I said, that's the freedom of not being tied to a job description and getting involved in as much or as little as I can and want to. So, yeah, they recognise it, too. But But, you know, as we all know, when you do a job, you have to do a job and and that's that's actually very difficult, Then, to find the time to go kind of beyond that, even though within the the field of S E N D you you have to you have to hear, um, the information from lots of different professionals and from lots of different angles

Otherwise, it's actually very hard, I think, to to to do the best for for Children who don't sit neatly in little groups, you know, especially those that have additional needs. They absolutely don't sit neatly in their little bowl. So, uh, but I don't know what the answer is

I think perhaps if they're listening to us and we have that, um, breadth of knowledge and the depth of knowledge, then that's probably the best that we can hope for. Hm. Thank you

Um, I'll stop the recording in a moment, but is there anything else you want to add before I do so?.

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