Hello, I’m Andy Downton and welcome to our final episode of this short series looking at life planning. In this episode, we hear from a person who has directly benefited from a life plan. This is Amy’s story.

My name is Amy and I’m autistic.

When I was younger I had quite a good like stance on what I wanted to do, but then I hit secondary schools, things started to go wrong for me.

I was getting bullied at school quite badly and I ended up being admitted into an inpatient unit for myself. Harm

And then I got discharged but then spent only a few months at home to be re-admitted to a different psychiatric hospital.

Whilst there I was on a section and that was when I got diagnosed with autism at the age of 16.

From there I moved to a specialist placement in North Wales which was really good. I did my first year of catering college to, so I achieved my level one there.

The funding was basically pulled from that placement and I was moved back to my hometown from that. I got stuck within the mental health system again. I was segregated for a long period of time in my room in rip roofs.

There was no hope.

It was just you’re here and this is what it is. And I think if I’d had the life planning, it would have massively helped me.

I think it would have helped him to see who I really was and it would have enabled them to see what my life was like maybe before all this happened and what what it could be like that they couldn’t see the person that was really there.

I got discharged and I think for a while things were going really well and then I hit a kind of crisis point and it was decided that my commissioners would Commission Tim to do some work around life design planning.

Since I’ve done the life plan, I have set out some goals with my care team around more independent travelling, more independent time out on my own. So now when I go and see my friends, I’m able to see them with just me and staff are happy to come back to the flat and leave me for a few hours.

We’ve spent a lot of time looking into the housing situation and I’ve spent a lot of time looking round houses, looked at private rentals, we’ve looked at I’ve applied for council housing and then I’ve also been attending college once a week to study my Level 3 in catering and we’re looking forward in how I can progress that.

We’re looking at learning to drive and then myself and my friends have been looking at holidays. I’m in the process of sorting my passport at the minute and we’re just looking at where we’re gonna go and when we’re gonna go. I feel sort of in disbelief that I’ve managed to do it all, to actually be living the life that I want to live now. It’s just, it’s so empowering and it keeps me going every day. And I want to say thank you to the Speak Up Self advocacy group for that interview with Amy joining me, OHH, Denise Needleman and Sam Sly from I’m Out of Here, one of the providers who work to produce life plans.

Sam, with life plans, how important is it that the person themselves is part of the process of drawing that life plan?

Often when we approach people or, or you know, people do on our behalf to say, do you want the, you know, to get involved in this process? They will automatically think that it’s going to be just like all the other meetings that they have to go to where they might have 5 minutes or it might all be about all the negative stuff. Or do you mean all that’s what people are, have been programmed to do. So this is a very different way and it it’s, you know, we’ll try and get people together if we can.

And that was what we did a lot more of until COVID. So COVID kind of gave us other views on things as well. But the, the reason for getting people together was so that you could have conversations where you came to some conclusions. Because again, you know, when you’re doing the assessments and things that people do at the moment, where you’re going to talk to somebody and then you go and talk to another professional and that then you can, you never sometimes come to that consensus about actually what, where are we going to with this?

Where do we, you know, where, where do we need to do? So we might have meetings or some people really like doing them online. So we found that more sometimes autistic young people quite like to sit behind a camera and not have it on and yet remain and, and interact with people that way.

Well, we might younger people, we might make several visits to go and see them and do it, you know, do it that way. But we try and find out and we give them as much control as we can

about where they want to meet, what they want, how they want to do it. And, you know, I had somebody the other day who spent hours in it. They were brilliant doing lots of mind maps of all the things that were really important to her, which then went into her plan. So, you know, it’s, it’s about shifting that way that people expect to be assessed, if you know what I mean, and making it into actually something where you know, it’s, it’s enjoyable for them. Again, I’ve had an e-mail this morning

from somebody’s RC actually to say that that he’d really, he just really enjoyed the meeting we had a couple of weeks ago and he just wanted to say that. And it was something that he hadn’t expected. He was really nervous about it came along with his Africa and actually had a, you know, really enjoyed being able to talk and somebody listening and feeling that, you know, that people were taking notice of what he said. So it’s lovely to get some feedback like that sometimes. Denise, I like to add also very often,

um, some and I and our colleagues have heard people say, well, this person won’t be able to sit the holdway through a life plan. They won’t be able to count, they won’t cope. And it’s remarkable how many times that has proved to not be the case. And it’s because it’s not a meeting and we saved professionals do not bring any reports. You’re not sitting around a table. We might be sitting in chairs around a room with flip charts out. We might be sitting somewhere else playing music, but it’s not the traditional meeting. And what we try to do in a live and event is free people up to bring their skills and their knowledge and the values.

And that listening that professionals do means that they can actively listen because they’re not expected to perform and they’re not expected to answer things on top of their head. And so often within half an hour you’ll hear someone say, I didn’t know that.

We’re not really interested in know that. So they engage in the process. Can I add to that one of the other? There’s two other key benefits of the process itself. One is that you can bring around cultural change, so someone might have a life plan and they might not be leaving hospital for quite some time, maybe even a couple of years. But the live planning process has, from our experience and evidence, meant that the people working with and support them differently if they get to know them better. And we have seen people’s lives being enhanced and opportunities being opened up for them while they’re still in hospital because the staff know more about them. And that’s gone from someone who I remember seeing being fed through a hatch in two rooms in hospital ward to when I was then sharing his reviews after it had life plan, seeing photographs, him out, going to the theatre, going out to play with animals and stroke the donkeys, going to classical music concerts. And his life has been absolutely barren prior to that process. But to be fair to the hospital staff, they listened and found the human being behind the reports and worked with that. The other bit of the process is it can often work. Family relationships have become fractured over the years because of incidents or events. It can be very healing somebody and commissioners and families, Yes, yeah, you know, actually for commissioning a process that where a family actually feels they have been listened, listening, listened to and that they feel that the commissioners have commissioned it. It has worked. You know, I’ve had I’ve done a lot of plans for those situations, you know, I mean where and it has helped a lot from that point of view. Definitely.

And I think what you’ve demonstrated there is how through a life plan, the process will always come back to being about the person a lifetime. I did last year and the commissioner’s response was to phone me and say I’ve just stopped crying and now committed, as are my colleagues, to getting his life back on track and getting his life back. And when I spoke to the team over those following weeks, the social work manager was saying, I’ve got my most experienced social worker here. And it was a championing that person’s right from a human rights perspective. And they just felt empowered because they had the information all in one place. It was very, very powerful. And they went out as a fantastic team of commissioners and professionals to battle to give this man his life back. That for us was the most important thing. And listening to his family and listening to him. And this was a man who, when we got involved, we were told he can’t communicate. Well, actually, could.

He has masses and masses to say and the whole team is advocate, just said. I’m his advocate. I’m not advocating this. That’s what we can do. We can empower professionals and those around to make the change for good.

We’re not doing their job for them. They know how to do their job. We’re giving them a tool to help them do their job better. And that brings us to the end of this short podcast series looking at life planning. I’d like to thank Denise Needleman and Sam Sly from I’m Out of Here, Debbie Reese and John Hull from the Cornwall and Isle of Scilly Integrated Care Board, and Catherine Pokhara from

Cornwall Council. And also thanks to the Speak Up Self advocacy group and more importantly to Amy for sharing her story.