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Patient story - Ivan

Ivan tells us about his time at CUH after being diagnosed with Guillain-Barré Syndrome in October 2021, and how the AHPs' at our hospital have a massive impact on his recovery.

Watch: Patient Ivan tells his story about how AHPs helped him in his rehabilitation.

Link: https://www.youtube.com/watch?v=Obp9A7ot-SY

Video transcript

00:00:03:03 - 00:00:04:17

My name is Ivan Moriarty.

00:00:04:17 - 00:00:06:09

I'm 37 years old.

00:00:06:09 - 00:00:07:07

I've been in Addenbrooke’s

00:00:07:07 - 00:00:10:11

since late October 2021

00:00:10:11 - 00:00:15:09

with Guillain–Barré syndrome (GBS)

00:00:15:11 - 00:00:21:00

initially on NCCU for around five months.

00:00:21:02 - 00:00:22:23

So in a kind of high dependency,

00:00:22:23 - 00:00:26:21

critical care environment and then now

00:00:26:23 - 00:00:28:05

a similar period of time

00:00:28:05 - 00:00:32:08

on the Lewin ward,

00:00:32:10 - 00:00:34:20

focusing primarily on rehabilitation.

00:00:34:20 - 00:00:37:17

So from a very early stage

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when my condition was particularly acute,

00:00:41:05 - 00:00:43:13

I was working

00:00:43:13 - 00:00:45:19

very closely with the physiotherapists

00:00:45:19 - 00:00:50:14

to understand my wean of the ventilator

00:00:50:16 - 00:00:53:01

and also try and maintain

00:00:53:01 - 00:00:54:05

range of movement

00:00:54:05 - 00:00:57:05

and regaining some movement.

00:00:57:06 - 00:00:59:15

Whilst I was in,

00:00:59:15 - 00:01:00:03

my nerves

00:01:00:03 - 00:01:01:09

have been seriously damaged

00:01:01:09 - 00:01:03:18

by my condition.

00:01:03:18 - 00:01:06:16

So throughout my stay at Addenbrooke’s

00:01:06:16 - 00:01:09:24

it's been very physiotherapy led.

00:01:10:01 - 00:01:11:21

However, I've also worked with

00:01:11:21 - 00:01:14:03

speech and language, obviously my

00:01:14:03 - 00:01:17:03

swallow was affected.

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The dieticians,

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making sure I didn't lose

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or gain too much weight.

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And similarly, occupational therapists

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again focusing on quality

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and range of movement,

00:01:31:05 - 00:01:34:16

even in the critical care environment.

00:01:34:18 - 00:01:36:03

More recently on the Lewin

00:01:36:03 - 00:01:39:11

wards, again, lots of physiotherapy,

00:01:39:13 - 00:01:40:05

lots of working

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with occupational therapists on

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using the strength and mobility

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I have regained to try and start

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to do things

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that are a bit more functional.

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So washing and dressing, eating.

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I’m continuing

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to work with the dieticians whilst I

00:01:57:17 - 00:02:01:15

weaned off my nasogastric tube

00:02:01:17 - 00:02:03:22

and then ensuring I

00:02:03:22 - 00:02:06:14

maintained a healthy weight and diet

00:02:06:14 - 00:02:07:21

once I was eating

00:02:07:21 - 00:02:11:17

normal foods and normal fluids again.

00:02:11:19 - 00:02:13:11

And

00:02:13:11 - 00:02:15:11

whilst my swallows come back

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really, really well,

00:02:17:00 - 00:02:17:24

I continue to work

00:02:17:24 - 00:02:21:00

with speech and language on my speech

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because my family had

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kind of recognised that perhaps

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my voice

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wasn't quite the same

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as it was before I was poorly.

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And so helping me

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with things like projection

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and articulation.

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So I continue to have an

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ongoing relationship with lots of

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those professionals.

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I think, I was very,

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very poorly and obviously the doctors

00:02:48:02 - 00:02:51:14

helped keep me stable,

00:02:51:15 - 00:02:53:05

but from a relatively early stage

00:02:53:05 - 00:02:56:24

of my recovery, my personal view

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as I was kind of

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relatively medically stable

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and actually the level of doctor

00:03:02:02 - 00:03:04:01

intervention was quite minimal.

00:03:04:01 - 00:03:06:18

And the majority of my time

00:03:06:18 - 00:03:07:11

here at Addenbrooke's,

00:03:07:11 - 00:03:08:11

both in critical care

00:03:08:11 - 00:03:11:09

and rehabilitation, has been

00:03:11:09 - 00:03:13:12

driven by the therapists,

00:03:13:12 - 00:03:15:20

physiotherapists, occupational therapists

00:03:15:20 - 00:03:17:13

and those other professions.

00:03:17:13 - 00:03:19:05

And so

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they have been the primary driver

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for my recovery and

00:03:23:14 - 00:03:26:01

staying sane and getting better.

00:03:26:01 - 00:03:31:11

And as I say, it's been absolutely key,

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you know,

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I was about to say,

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between me and you, it's

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not between me and you is it?

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That’s the whole point!

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But I feel like

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those other professionals -

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AHP If that's the right word.

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I found it's much easier to build

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rapport and a

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really sociable level

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of interaction

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with those professionals

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than perhaps it is with doctors.

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But maybe I'll get strung out

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for saying that. I don't know.

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They are really,

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really good,

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all of them across the board

00:04:04:02 - 00:04:05:21

at building a level of rapport,

00:04:05:21 - 00:04:07:00

fantastic bedside manner

00:04:07:00 - 00:04:10:15

and that's really helped me, obviously

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doctor care

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and nursing care has been fantastic too,

00:04:13:07 - 00:04:15:07

but I think for me

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and peculiarities of my condition

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and the impact it's had on me

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and my movement, that I think I'm

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like a probably

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a really good example of someone

00:04:25:04 - 00:04:26:14

who has really, really,

00:04:26:14 - 00:04:28:23

really benefited from

00:04:28:23 - 00:04:29:23

the physiotherapy,

00:04:29:23 - 00:04:31:13

occupational therapy intervention

00:04:31:13 - 00:04:32:11

and all the other support

00:04:32:11 - 00:04:33:05

that goes around it.

My name is Ivan. I'm 37 years old. I've been in Addenbrooke's since late October 2021 with Guillain-Barré Syndrome (GBS) initially on NCCU for around five months. So in a kind of high dependency, critical care environment and then now a similar period of time on the Lewin ward focusing primarily on rehabilitation.

So from a very early stage when my condition was particularly acute, I was working very closely with the physiotherapists to understand my wean off the ventilator and also try and maintain range of movement and regaining some movement.

Whilst I was in, my nerves have been seriously damaged by my condition. So throughout my stay, at Addenbrooke’s It's been very physiotherapy led.

However, I've also worked with speech and language, obviously my swallow was affected, the dieticians, making sure I didn't lose or gain too much weight. And similarly, occupational therapists, again focusing on quality and range of movement, even in the critical care environment.

Non-urgent advice: Guillain-Barré syndrome

Guillain-Barré (pronounced ghee-yan bar-ray) syndrome is a very rare and serious condition that affects the nerves.

It mainly affects the feet, hands and limbs, causing problems such as numbness, weakness, and pain.

It can be treated and most people will eventually make a full recovery, although it can occasionally be life-threatening and some people are left with long-term problems.

Guillain-Barré syndrome affects people of all ages but it is more common in adults and males.

To find out more about Guillain-Barré syndrome visit the NHS website.

More recently on the Lewin wards, again, lots of physiotherapy, lots of working with occupational therapists on using the strength and mobility I have regained to try and start to do things that are a bit more functional. So washing and dressing, eating. I'm continuing to work with the dietitians whilst I weaned off my nasogastric tube and then ensuring I maintained a healthy weight and diet once I was eating normal foods and normal fluids again.

And whilst my swallows come back really, really well, I continue to work with speech and language on my speech because my family had kind of recognised that perhaps my voice wasn't quite the same as it was before I was poorly. And so helping me with things like projection and articulation. So I continue to have an ongoing relationship with lots of those professionals.

I think, I was very, very poorly and obviously the doctors helped keep me stable but from a relatively early stage of my recovery and my personal view as I was kind of relatively medically stable and actually the level of doctor intervention was quite minimal.

The majority of my time here at Addenbrooke’s, both in critical care and rehabilitation, has been driven by the therapists, physiotherapists, occupational therapists and those other professions.

And so but they have been the primary driver of my recovery and staying sane and getting better. And since it's been absolutely key, I feel like those other professionals, AHP If that's the right word, right phrase. I found, it's much easier to build rapport and a really sociable level of interaction with those professionals than perhaps it is with doctors.

AHP Day 2022 - Patient story - Ivan

I think I'm probably a really good example of someone who has really, really, really benefitted from physiotherapy, occupational therapy intervention and all the other support that goes around it.

But maybe I'll get strung out for saying that. I don't know. You know, they are really, really good, all of them across the board at building a level of rapport and fantastic bedside manner and that's really helped me obviously doctor care, nurse care has been fantastic too I think for me and the peculiarities of my condition and the impact it's had on me or my movement.