Care Quality Commission CQC Connect, 3 Nov 2022

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From YouTube: CQC Connect: Who I Am Matters Podcast

Description

In this podcast, Debbie Ivanova, Director for People with Learning Disability and Autistic People, and Marie Cox, Hospitals Inspection Manager speak with Fiona one of our experts by experience about our report 'Who I Am Matters' and more broadly the experiences of people with a learning disability and autistic people in hospital. They discuss our findings in the report as well as discuss Fiona’s lived experience of accessing acute hospitals.

You can read the report in full our website now: https://www.cqc.org.uk/publication/experiences-being-hospital-people-learning-disability-and-autistic-people

Find out more information about the CQC and how it regulates health and social care in England: www.cqc.org.uk/

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Thank you, hello, and welcome to this episode of cqc connect in this episode. We're going to explore our.

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Latest report, which is focusing on the care of people with a learning disability and autistic.

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People in acute hospital this publication, it reports back on a review that we carried out.

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On people's experiences when they need physical health care and treatment in hospitals in england,.

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This was part of our work to transform the way we regulate,.

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So my name is marie cox and I'm a hospital's inspection manager here at the cqc.

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I've been involved in the journey of this review and will be hosting today's podcast.

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I'm pleased to be joined by fiona, an expert by experience at choice, support and debbie, even.

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Over directed by experience at choice, support and debbie, even over director for people with.

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A learning disability and autistic people here at cqc welcome and thank you both for joining us.

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Today, let's start by introducing who you are and why this topic is so important to you I'll start.

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So as he cox and I'm an inspection manager, I've been part of the design and I've led.

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This review and I volunteered to do that because it's so important to me that we.

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Hear and understand people's experiences fiona. Would you like to introduce yourself.

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Yes, my name's fiona, I am an expert by experience with choice, support.

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uh What's important to me is um being what is it sort of patient? What is it sort of patient.

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um Talking, well, I don't know being normal supposedly.

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Hello, I'm debbie even over, and um this is a really important topic for me when we look.

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At care and support for people with a learning, disability and autistic piece of those services.

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And taking action where services fail to meet the right standards, we know that too.

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Many people are in the wrong type of care and their needs and aspirations are not being met.

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But most people live in the community and we all have access to the same health care and hospital.

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Care, however, people with a learning experience is not the same, and the learning, disability and.

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Mortality review program- the leader program- has shown this, so I wanted us to have a real look at.

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How people experience healthcare services and the first piece that we've done was to conduct.

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This review, when hospital care isn't right, that was to conduct this review when hospital care.

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Isn't right, the consequences can be grateful for people, and some of you will know about oliver.

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Mcgowan's story I'll talk a bit more about that in a minute, because that makes it incredibly clear.

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Great, thank you both, um so my is for debbie. So this report, as we've heard, is based on.

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The experiences of care of people with a learning disability and autistic people in acute hospitals.

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Could you tell us a bit more about the report and the things it covered.

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Okay, so this report um came up because- and I just mentioned the learning- disabilities mortality.

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Review the leader program now that program was established in 2015 and it reviews the depth of.

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People with a learning disability in order to learn from those deaths and put that learning.

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Into practice, um one of those reviews that was uh was held was um one of those reviews that.

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Was uh was held was about the death of a young man called oliver mcgowan. He was 18 years old when he.

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Died in hospital, there were a lot of things that were wrong in oliver's care and he and his family.

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Weren't always listening to which led to some mistakes. The leader report, potentially avoidable.

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Now, when we look at those legal reports- and we look at the findings of of all of them and.

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And the annual report that comes from that organization, what we see is that there are.

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Some themes and trends in the care of people in hospitals as the regulator for health and.

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Social care we wanted to go in ourselves, things were going well and what needs to be improved.

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What we've done is we've used that report to focus on people's stories to illustrate.

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What really does need to change in those services, and the report is structured into.

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Five chapters: we look at access to care, we look at communication, we look at care and treatment.

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We look at communication, we look at care and treatment in the hospitals, we look at protected.

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Characteristics and equality of care and the final areas around workforce, skills and development.

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And we've used those stories and people's voice to really help. Explain our findings and just show.

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How important it is to think and show how important it is to think about the effect.

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Of all of those things on the people receiving that care, so those have come from some of our.

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Conversations with you and with other people that we've met while we're visiting hospitals.

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Thank you debbie. It's good to hear about it in a bit more detail and before it's a little bit.

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More about some of those overall findings from the review, and then we can think about how that.

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Resonates with fiona's experience, can you tell us a bit more about those findings? Yes, of course,.

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So the first verse there I'll mention a bit around is access to care, and this means not.

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Just how you physically get in access to care- and this means not just how you physically get into.

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A service but how those reasonable adjustments have been made to make it really work for people.

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Now those adjustments are going to be different for every single person and they can be about a.

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Whole range of things it might be about the place where people have to wait when they're waiting up.

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How messages are given to them or explained, or about the time taken to let people process the.

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Information they're, given people have a right to expect that those reasonable adjustments are made.

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Because if they're not made, they can't access the care they need when they need it.

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What we found was that people have told us it was off to their start right from the first.

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Point of contact with the hospital, so that's the first area and and there'll be quite a bit.

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In the report about that second, one I wanted to mention was about communication. When time isn't.

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Taken to make sure people's communication and ways of understanding are really tailored to.

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Their individual needs, then it's much tailored to their individual needs. Then it's much more.

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Difficult and sometimes even impossible to provide that good care that we all have a right to expect.

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Good communications key to making sure people are really involved in their care and people do.

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Have that right to expect that communication to really be tailored to what they need have that.

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Right to expect that communication to really be tailored to what they need individually.

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This is both about how you communicate with people, but also about how you listen and how.

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You understand their communication with you as a member of staff or somebody working in a hospital.

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This can be true and therefore, hospitals need to really make sure that staff have got the tools.

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And the skills to enable them to communicate effectively to understand and then to meet.

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People's individual needs not listening to oliver and his mum had real impact for him, and there are.

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Some other examples in our report where people would clearly know where people would clearly.

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Not listen to on care and treatment in hospitals and people have got a right to expect to be fully.

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Involved in their care and treatment in many cases, this is still not happening because there's not.

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Enough listening communication adjustments and involvement, so services really need to make sense.

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And involvement, so services really need to make sure that staff have got the time and the skills.

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To listen to people and their families so that they understand and can meet people's individual.

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Needs- and the title of this report, who I am matters really does reflect- that all staff who.

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Have contacted people with the learning discipline people need to have that training. You need to have.

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That train to help them to interact appropriately when I was in hospital, um I found it hard enough.

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To make sure people really understood my needs and wishes so think how much more difficult that is.

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For somebody who does have some additional needs and adjustments that that should be addressed and.

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For giving us an idea of some of the themes of the report, so my next questions are for you fiona.

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If you feel comfortable and we're going to talk a bit about what happened, when you hurt your finger.

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And had to go to hospital is that, okay, that is okay, yes, so first of all fiona tell us a fiona.

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Tell us about how you hurt your finger and about when you first went to the emergency department.

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Well, there's a little story there so when it was locked down the first time around.

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I wanted to do some exercise and I had some support, but the swimming pools and the and the.

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um Gyms weren't open, so my support worker suggested that I got somebody to help me and we.

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um Came up with this, I, he came up with this idea to um do some exercises in my around my area, so I.

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Live on the fourth floor, so I have a couple of stairs and I uh got some help with going.

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Up and down quite rapidly as fast as I could to get more fit and unfortunately, on the last bit.

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And unfortunately, on the last week before my swimathon, I managed to trip up during those days.

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So tell us what happened then. um I got really nervous, really scared, hurt and and didn't really.

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Know what happened and um came back into my flat and was shocks didn't really know what.

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To do, but the people that were helping me also didn't know how to react. To me to my reaction.

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Because it was at the weekend, I decided to leave it till the monday to go to any.

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And so I had the weekend to try and survive. I did, however, and I ended up in a e.

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um Whereby for people outside the door, I had to wait for probably an hour.

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um To be even uh I don't know whether they call it triage or looked at yeah.

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um And so there was a long wait and then there was another long wait to.

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Get seen there was a long wait and then there was another long weeks to get seen.

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And so I was surprised to find out that I'd actually think I'd actually broken it in two.

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Places not one and therefore they needed to do an x-ray. um They needed to do an x-ray, which.

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um Was in another department of the um hospital which I was directed to, unfortunately, on the way.

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Back to the office that I had to go back to for the person to realize, um I, unfortunately, in the.

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End, I think somebody found me and direct me back so um then uh in the x-ray department.

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um I went in and they looked at my finger and was surprised to looked at my finger and was.

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Surprised to see that I wasn't emotional or um annoyed or angry or whatever you like to say when.

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You're upset and in pain- and I think I'm trucked up with painkillers, to pain due to having epilepsy.

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um And so then she took the x-ray and said it's broken and I went. I was rather pleased after that.

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Because that meant I felt like it was okay to be in pain, okay! Well, why don't you tell us about the.

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Things that went well, it was broken. I was rather pleased and I got taken to the computer and talked.

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To um come back in two or three days to um get it looked at with a specialist with a specialist.

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um And then they looked at it and discovered that I might have to have it operated on.

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Which was a bit of a shock and uh didn't really understand it when they said um when they said.

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um Operated and then they told me at the time that I could be awake and you could have it without.

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um The injection so that you could have half the art. What's it called.

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um So that you don't feel it and or you could have the whole arm, and I.

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Went well, of course, I think I want the whole arm. Thank you very much.

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um Which, unfortunately meant afterwards, I um I couldn't couldn't feel my arm at all.

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um But through the process of uh going in for the operation, I was waiting around trying to.

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Understand how long so you had to go at seven o'clock in the morning long, so you had to go.

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At seven o'clock in the morning and then wait until you were served and do all these things.

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Like undress get, it seemed to and then wait for them to come for you to be, but what they uh I feel.

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They didn't take that there's processes that you need to go through before you go to the operation.

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Before you go to the operation room, so these things were um don't eat or drink before something.

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Like five o'clock in the morning and so and if you have to take medication, take have vision.

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So that's fine. I did all that and I got changed and ready and they suddenly came to me and said.

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Have you been um to the toilet and I said no and they said well, you need to go two four.

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You need to go to for um a p before you go in and I was like. I don't understand why that is.

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And they didn't tell me, for I feel they didn't tell me for an hour or so, and I couldn't I don't.

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uh What's the word pee on command, so I had to sort of try and think of how to do it. So anyway,.

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I spent about two hours waiting for this process to happen and it turned out. It was because.

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You, if you're pregnant, they can detect it or something so the thing about the things that.

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You've just told us fiona about when you went to the emergency department and what were the.

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Things that went well and then coming back on the day of your operation. Thinking about those things.

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What do you think were the things that could have been done better so what things better. So what.

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Things would have helped you to understand what sounds like quite a lot of demands.

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Well, it's a tricky situation because you're in a e which is a very busy and um there's lots of.

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People around expect somebody that a stranger to know that you have difficulties necessarily so.

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um I can't really understand what you do. However, I would prefer to be told.

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That I waited in a waiting room, told that you'd only be given a piece of paper to say.

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uh One to five: this is how it's going to happen or you'd be taken to a side, room and just said: look.

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You're gonna have to wait. This is what's going to happen and this is how it works. It's gonna happen.

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And this is how it works and then go back to the waiting room if need be. [music] So it's just.

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Putting that little bit of I mean extra time will be great, but that's not really possible. I think.

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That's a reasonable adjustment, I'm not sure being given the time to help you to understand things.

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In the same way that everybody else would be able to understand, what's going to happen, yes, I think.

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So, however, it can be tricky to understand that I have a disability or a learning difficulty so.

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um I understand that to a certain next ability or a learning difficulty so.

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um I understand that to a certain extent, but um if you say it to them so I'd say I uh got a learning.

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Difficulty or something like that and maybe even have, I think I had that sunflower um strap. That's.

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Been um around, you have a difficulty um which helped them to a certain extent, but not completely.

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And, and so did you go through the visit to the emergency department and then back on the day of.

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Your operation on your own, or did you have anybody with you to help well on the first or did you have.

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Anybody with you to help, but on the first um on the a e situation, I didn't have anybody to help.

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um And then, obviously um I think it happened on a sunday. My mum didn't come back home until.

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They choose, then she started to come with me to the appointment after which, so we had.

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A went into the hand, um specialist and mum was with me and then also I had to move back home to.

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Go through the process mission, were you allowed to have somebody with you.

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When you went in for your operation, um what happened? No, I was taken by my mum in her car.

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And uh taken to she showed me the door where I had to be.

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um And then I was unable to have anybody with me after that.

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So I had to go through this massive operating looking.

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Waiting room and say to the receptionist: I've done this and my paperwork and then.

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Wait on my own some of my paperwork and then wait on my own and what? What was that like for your mum.

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Nerve-Wracking, um I think it's unfair for anybody not to have anybody to help you as.

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You go through these painful situations and ongoing care, um but I think it seems.

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More difficult for a parent to understand that they're, the child, who has a learning difficulty.

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Who doesn't understand this society as well as joe blogs? It makes them makes them more nervous.

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Than normal and anxious I mean upset because it's not right yeah, so so thank you fiona for talking.

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Us through your time in hospital, when you hurt your fingers, it's really interesting to hear about.

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These things from your perspective and of course, the purpose of this whole report is to talk about.

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The experiences of people when they go to hospital, if it's okay, I'd like to ask you to think about.

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Your experiences in hospital and to think, at the same time, about the things that the report says.

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Obviously, you can pull on more, so if that helps you to to think about things, thank you.

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So so, just as a kind of just as a quick question, I suppose tell us what you think about the report.

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And whether you can see things in there that have in common with your time in hospital.

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Well, there's a few things that um it's helpful to understand that there are people that understand.

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Us and want to help us more, and I think it's um good to have examples of other people's.

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Experiences and and to see that there's other people out there that are struggling.

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With these situations so think about what debbie has said in terms of communication, for example,.

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um And and your experiences of communication when you've been to hospital, do they sound.

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Do they sound like something you can relate to? I can relate to the mistakes and I can relate.

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To positive, but generally when they're positive, I have to have somebody with me, which is unfortunate.

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Not all the right times can happen, yeah yeah, not all the right times can happen. Yeah yeah.

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So I think um it's really nice to be accepted, as um your average person, however, is difficult.

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To communicate that or to communicate that cognitive processes are damaged when you're, when I.

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um Relatively okay with conversation, because what happens to me is um it takes me time to detonate.

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Names of pro conditions or processes that you have to go through when you go to a hospital yeah.

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And that's where this report helps for examples of difficult and how they could change them.

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Sure so one of the things that you've just said there that I'm thinking about is that you're more.

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Likely to have a positive experience if your mum goes too, and we talk in the report about or or.

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Supported yes, yeah and- and we we talk about in the report, um the the um the support when they go to.

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Hospital is that is that the type of thing that you're thinking about one of the ingredients of.

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A positive experience is including your circle of support to help you yeah. Definitely, I think.

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um It's either tends to be my mum, but I've since living in my independence tends to be.

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My mum but I've since living in my independent supported um flat yeah I'm trying to get other.

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People from choice support to help me with those processes so they've taken over mum's.

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Interacting with that type of so mum can concentrate on being mum being on ...?.

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That's a mum's thing: okay, stop doing that!.

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All right fiona, um one of the things that we talk about in the report as well.

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um One of the things that we talk about in the report as well is about how a person's learning.

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Disability, or about the fact that they are autistic, can overshadow any other needs that they.

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Might have, could you tell us about when you're hydrocephalus meant that staff found it confused.

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Which of your hands had the broken fingers? Yes, so I have um the left hand. Side of my body is.

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Naturally, formed the right hand, side of my body, my toes and my hands aren't so I can feel things.

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But I can't necessarily so on my right hand, I can squeeze it like a fist and I can take it out.

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Like when you have five fingers and one thumb, but it's not straight so I'll, get it to be straight.

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And natural and get it to be straight and natural because it put it goes the it's a little bit like.

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It's um over jointed do they say okay and so when people so I can shake somebody's hand, but.

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If you hold my hands up, you can see a difference. So when you broke your finger and you went to the.

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Emergency department, what difference did that make? Well, they were more concerned about my.

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Right hand and my left hand your right hand, being the one that's affected by the hydrocephalus. Okay.

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Because it looked like, I have one finger that goes backwards and backwards more than others.

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And it looked like it was that one rather than the opposite hand: yeah, okay, okay, all right that.

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Must have been frustrating, it was yes very, but I mean having to explain that you have.

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High educators and not everybody having to explain that you have higher education, not everybody is no.

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Knows that information, it's quite difficult to say in one sentence, yeah a bit tricky to.

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Yeah do some. I believe people are less likely to have it today than when I was born, so it.

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Takes some time for you to be able to explain to people the difference that that makes yep.

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All right, thank you, fionna um debbie. Could you talk to us a bit more about the other themes.

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And findings in the report- yes, of course- um and I'm really pleased to that pierre has been able.

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To talk us through that so well in terms of of her experiences, because I do think it does.

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Reflect the themes that are in the report- and I think I want to kind of grow out at this point.

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Maybe a bit of a challenge to to everyone who who's listening who's, listening because.

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I think we need to really recognise the kind of things that fiona's talked about, so we need.

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To recognise that every person is going to be different, we need to respect that individuality.

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And then we use, we need to react differently, and I want to talk a bit about that in terms of.

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um Protected carrot, stuff, didn't properly, understand, protected characteristics and.

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The quality of care- and there was a tendency to focus on one aspect of the person a bit.

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Like fiona was saying around to hydrocophagus, um that sometimes would be a person's learning.

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Disability or sometimes actually not recognising, that protected characteristic autistic people were.

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Not recognised as such and their needs were were ignored, so there's that recognition. First, that's.

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Really important, then that has to lead into a respect, because people have got the right to.

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Expect the care and treatment that meets all of their needs and the specific protected equality.

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Characteristics of autistic people and people with the characteristics of autistic people.

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And people with a learning disability will also be about age, race, sexual orientation and those.

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Often risk being overshadowed because staff lack knowledge and understanding about inequalities.

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Overall, so providers need to ensure that staff have trade all of the person's needs are met so.

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That takes them to the third bit, which is about reacting differently and what we also therefore,.

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Talk about in the report is about workforce skills and development. We did find some great.

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Practice from some staff, and particularly from some of the specialist staff and some.

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Of those people who actually from some of the specialist staff and some of those people who had.

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Really good experience of people with a learning disability or autistic people in their own lives.

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But we cannot expect that just those specialist practitioners and teams have sole responsibility.

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For that was have sole responsibility for that work, so they need to be able to focus on.

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Improving everybody's um experience and knowledge so that all people who come through the hospital.

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Whether that be on a weekend when they're, not on duty or an evening when they've gone off,.

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Get that high quality level of care, so people have the best specialist practitioners or teams.

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Their providers there, for so those hospitals, those people who run the hospitals, must make sure.

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That all staff have up-to-date training and the right skills to care for people with a learning.

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Disability and autistic people, and that also needs the right skills to be able to communicate, to be.

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Able to respect and to the whole piece the whole way that people are interacted with sure thank.

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You debbie thanks for that. It's really helpful to um understand that outline of the themes.

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That are related to protected characteristics, a quality of care, work for skills it saved from.

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All of those things that, although we found and we have found it saved from all of those things that.

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Although we found- and we have found some positive things in the work, there is still a lot of work.

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To be done to improve around these, so tell us about from your experiences that the difference.

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It makes when staff know how to care for you properly. I'm happier, um if is much more normal.

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um And it's not me getting frustrated or angry, or it's about uh the other person realising that I.

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Am enthusiastic, got a bit of a sense of humor. Stick got a bit of a sense of humor.

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And not to take anything too seriously, although things are serious.

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I think it's all about taking your time, maybe saying it a little more basic than the average.

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Person the things that have happened when you've been cared for by staff who have the skills to.

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Do it properly are those the sorts of things that you see? Yes, yes, very much so so. Thank you.

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For that fiona, that's really really interesting. Just off the back of that. My final question for.

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You would be that if you had a magic wand and cute hospital settings, what would it be a smiling face.

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To a certain extent- um and I think it's just to say hello, how can we help you.

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I don't really know it's tricky, because it's such a pressured job.

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To be in a hospital that, I think that I think it's just about, if you say, you've got a condition.

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That you can see that they understand and yet a certain amount of compassion. I guess.

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Rather than I'm frustrated, because this person is too slow for this process, it's more like that.

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Really yeah, but yeah really difficult to say because of how pressured the job is. I think.

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I think you've been, I think, you've been very, very generous in your analysis of that. Actually, I think.

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One of the one of the themes that I can hear from the conversation that we've just been having is.

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About the one thing, that's really important and the thing that's really important is taking the.

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Time to hear and understand what you need would would you say that that is yeah yeah.

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Thank you so much for that fiona. It's really interesting to hear about all of these things from.

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Your perspective and it's the interesting thing about this report is that it is all about this.

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Report is that it is all about the experiences of people, so this has been a really interesting.

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Discussion and thank you for joining us and sharing your views with us today. Thank you for.

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um Including me you're, very welcome, so you can find our report, which is called, who I am matters.

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On our website, our website and the link for that is in the podcast description. You'll also find.

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Some really helpful supporting literature there too, thanks to those listening keep up to date,.

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With all of the work we're doing to transform the way we regulate services for people with.

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A learning disability and autistic people, through our blogs, our digital engagement platform of this.

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Podcast we've got lots of cqc podcasts coming up so look out for those soon. Thank you.