Kate Allatt, expert by experience, patient advocate, campaigner and internationally published author of ‘Running Free – Breaking out of locked in syndrome’ gives her perspective on building effective partnerships between health care professionals and patients.
This presentation was recorded at our seventh annual leadership and management summit on 9 May 2017.
Hello everybody. In 2010, February 2010 I was 39. I know that’s hard to believe but I was, so you do the maths. I was a 70 mile a week fell runner. I’d do anything to get away from my husband and kids, but just 24 hours after a run round Chatsworth Gardens this happened.
Kate Allatt from Daw in South Yorkshire had a severe brain stem stroke and then went on to develop locked in syndrome. Doctors said she’d never walk or talk again. The mother of three defied their predictions.
Now this is the sciency bit, now you’re all quite bright, I’m just the marketer but I had right vertebral artery dissection occlusion and infarction of the pons, so the clinicians amongst you will probably understand that’s quite serious. And actually on this graph here you can see the blob right in the middle with the white cursor over it, that’s my brain now. I had some research done on me in UCL and that was my brain two years after. So, that’s what it looks like now. So my brain was rewired.
Now what I want to share with you, what was that like? Well frankly, it was like being buried alive. Now could you imagine thinking, feeling, seeing, hearing, assuming your head’s pointed in the right direction, but not being able to move a single muscle? Can you imagine? So effectively, if someone touched you on the hand or the finger or anywhere on the body, the message went up to the brain but the brain could not tell the hand to move, and for two weeks I was considered vegetative, but I wasn’t I was fully aware of everything that was going on around me. I was unconscious, I was aware of myself and my environment.
Now I’m going to play something for your now, which to give you a real idea, I mean we talk about patients, well let’s just strip that back. Patients are human. I thought and I felt and I was very, very scared and this is the sort of thing I was thinking in ICU, not only on an hourly, minute by minute basis, weekly basis, monthly basis, I was there for nine weeks. I was in rehab for a further eight months, but I just want to give you an idea of what I was thinking and feeling.
It’s me, it’s me. Please pick up the board please. Can’t you see I want to communicate. Look into my eyes. Please just look into my eyes. I’m so scared. I don’t sleep. I can’t sleep at night. Ow. My blood leg cramp. Please stop. No-one knows about it. Just great. Can the indignity get any worse. Now tell my mum I’ve started memories. I need to hug my kids, where are they? This separation’s breaking my heart. Is Buddy going to come up. I bet India’s skin’s in a right mess. I’ve shat myself, oh no why in front of Rob. Why are you visiting. Judging by the look on his face it’s just so bad. Oh this is so embarrassing. Please treat me like you want to be treated yourself. I’m still me inside. Good fun Kate. Oh my god, the man next to me has just died. I’ve never seen a dead body before I’m so frightened. What if the nurses try to kill me. I’ve seen the films. Maybe they think I’m not worth keeping. Please look into my eyes. I need help, I’m so scare, my heart is jumping out of my chest.
Now, week eight all I had was a bit of blinking, a slight head movement and this right thumb moved 3mm, that’s it, that was all I had. I left IC after nine weeks, I went in rehab. Sixteen weeks after my brain stem stroke, I just six weeks after I arrived there, I had a review. In that I was written off. I was going to go to a nursing home. I wasn’t going to improve significantly. Even though I felt movements, you couldn’t see with the naked eye. On top of that my family decided to go on holiday on my 40th. I didn’t climb Kilimanjaro via the western breach which I’d paid for and never got a blood refund, can you believe it? So I’d all these events set up in May 2010, I was pretty chipped off, being polite. Anyway, that was the moment I decided to stop giving up on life, actually to prove everybody wrong. That’s my chip on my shoulder, I’ve always had it I’m afraid, but it stood me in good stead.
So, from that moment I sat in bed and I’d look at every part of my body and I’d think to my mind, move damn you, damn you just blood move, and I’d be telling myself in my mind and staring and to give you an example, my left side didn’t move for five months and I’d like, while Jeremy Kyle was on, I’d look at my big right toe, after therapy had finished for the day, and I’d be thinking, come on move, move damn you. Three weeks later I never stopped, 450 times and I’d be, week I was doing this, I’ve read the Teasel stuff since and you know, repetitively, frequently, intensively, Ann Corbett in my first book which is internationally published, I’ve got five copies, it’s in there, it’s willing, I started writing that the day I left hospital, that’s a different story.
Anyway, three weeks after I starting willing my body, I got this tiniest movement in my big left toe and do you know all I could think about, I’m a marketer, I’m not a medic. I just wanted to be home with my kids and I wanted to hug them and I wanted to be a normal mum, and I thought if I can make that left toe move that being the farthest from my brain, then game on for my whole left side. That’s all I thought. I didn’t know anything else. Didn’t know about neuroplasticity, didn’t know about anything. For me, it was just, I had the belief I could make that happen, now there’s no reason why nothing else could happen. I was simple.
So, I had some goals. What goals did I have? I wanted to go up the stairs to bed. I didn’t want to have a room downstairs. I wanted to hug my kids. I wanted to eat again, I wanted to drink again. Six months nil by mouth, horrific. I wanted to run again. I wanted to walk out of hospital which the nurses laughed at, by the way. So, I had some big goals. I wanted to get rid of my PEG feed and everything else.
So, the goal setting was a huge thing – you all know that, we all know that it’s important with patients, but do we really set goals based on what patients want? Question; you know do we really do enough to understand what can help motivate patients to try and improve, whether it’s to walk their grandchildren down the path at school or knit a jumper or whatever it is for them, mine was running; do we do enough to understand goals and motivations for patients?
Now, if, I have to say, if I was an equal patient partner working for the NHS leadership which I’d like to by the way, I tell you what I want to impart with you now is the knowledge I’ve accrued over the last seven years. My own recovery and the last, I think 700 and so global people affected by locked in syndrome, I’ve voluntarily been an advocate for the last seven years, because I feel so strongly about it. We’re all written off, that’s a commonality. And some of us don’t improve, very much, some of do improve but there’s so much in between as well, it’s just amazing.
Now take this guy here, let me come onto him in a minute actually. The first thing I want to say is if I was a real patient partner, is I’d research the system barriers and the solutions to patient motivation. I’ve talked about patient motivation, I had it in droves, I’ve got it in droves. Not everybody does. What do we need to do to better understand that? Because my feeling is, we feel and I feel it, we throw a lot of rehab interventions at patients, all stroke survivors, not just the rare one I had, and you know the patient’s demotivated. Why are they demotivated? They are on a ridiculous number of drugs which are all contravening to making very apathetic. Have they got neurological fatigue? Have they go no support structures? What are the reason, if we don’t treat the reason behind their motivation, we might as well just throw away our money. Al this therapy time and all this cost and everything else. So I’d like to see some research into the barriers and the solutions to improve the systems to identify the factor of patient motivation.
I’d also like to, dead simple this, but I’m simple, I’d change the language that we use in hospitals and in the community. Why? Because let’s take this guy, funnily enough I’ve just come back from New York, lucky me, but I went on a patient visit to see this guy here called Rob, 39 had a brain stem stroke seven weeks ago, locked in. I spent three hours for four days running by his bedside, talking to him, meeting his family, meeting his friends, like I do in all my patient visits, and do you know what, I didn’t say to him you’ll be running again, you’ll be eating again, you’ll be doing, you’ll be fine, don’t worry about it. No, I don’t promise anything. I say, listen there are no promises but there are possibilities. You might improve significantly very quickly or you might not, you’ll improve slowly over the years. And no-one knows, I don’t have a crystal ball, doctors don’t have a crystal ball, but the repetitive, frequent, intensive, the support and the fact that you are driven will help you improve. I never use the word recovery, it’s all about improvement and that’s important because if patients think they’re going to be recovered whether they’ve had a heart attack, cancer or whatever else, after a life altering event, that’s wrong. I’ll never be the same as I was. They need to know it’s going to be a new normal and they’ve got to be the best version they can of themselves, and that’s it.
But this guy here, I spent three hours on the Friday night in New York, just got off the plane and do you know what, they sent me text just as I got back to my hotel in Manhattan, and they said, Rob’s just moved his fingers and thumb and foot, and there you have the evidence there. You know, if you inject some self-belief, some positivity we don’t quash hope, we don’t promise things that we can’t promise, no-one has a crystal ball, then that self-belief factor is so important.
I wrote a blog for the Huffington Post, I’ve just written one for the Guardian today actually, I’m really pleased that you might want to check out, but this one I wrote, I never thought if I ran again, if I hug my kids again, if I went home, if I ate again, I always thought, when I got motivated, when. That was it, when. We talk about growth mind set and personified it then, but I think it’s very important to change the way we talk about illnesses, I really, really do. And it’s about people being the best versions of themselves.
Now, this girl here, Claudia, I went to Poland, I know you probably think I have a really nice glamorous life, I don’t, but she’s 24 had a brain stem stroke. Do you know by the time I went back from Poland to Sheffield, ten hours, her boyfriend sent me a What’s App. When I was by her bedside she did that with her hand. Within ten hours, no therapy, just belief she did this. That’s the belief evoke.
Now, let me talk about language; this girl here Steph King, she wasn’t abroad, she’s from the UK. She had a brain stem stroke. Her doctor said to her when she left rehab, you’ll plateau in two years. To the very, very, very good equestrian rider. She rang me up when I had my charity, two months before her two year appointment and said, devastated, absolutely in tears, she was nowhere near going back on a horse, nowhere near doing anything. She’d taken that word literally which I think, and you’ll probably bear this out to be a cost term, it’s nothing to do with potential to improve, it’s just how people are described. Anyway, the effect of that one word on her life, it broke her, absolutely broke her. And it’s dangerous.
Take this girl here, she is my heroine, Christine Mordell. She’s my age, had a brain stem stroke at 20, twenty years ago. She’s severely ill at the moment and my heart goes out to her but I have to tell you, back in 2012 January she Skyped me with her carer. She was in a wheelchair with a headrest. I made a cheeky phone call to neural pathways and I said, she’ll be a guinea pig, just think of the kudos if you did something with her. She’d not eaten for nineteen years. Seventeen years at that point. Two years on, they said yes, loads and loads of work later, that picture came through eighteen months ago. Her first meal in nineteen years. The belief she got from that Skype conversation, she’s sitting on a plinth now, standing up, as I say she’s very, very poorly at the moment with sepsis suddenly, but she’s phenomenal, she’s a force to be reckoned of, and it’s not the word recovery, it’s best version of you.
I don’t think we should strive for perfection or recovery, it’s just progress and I think growth mind set is something we should apply in motivational patient interviews and so on.
And I guess what I’m saying to you is, I think patient motivation is a very small problem within all these problems of the NHS but you know, if you take Sir Dave Bellsford from GB Cycling, talked about marginal gains, if we tweaked everything and improved everything, what will the end result be. I think it would be very good actually.
I also think that social media, this is a screen shot of my Facebook memory back in 2010. Can you believe in hospital I was writing this. I don’t think failure is an option. I don’t think about thinking why me, I wrote this on the 25 August when I was still in hospital. I’d rather use the power of the brain positively. I can’t quite believe I wrote this, but the reason I put this up is to say to you, are we using social media enough from peer mentoring to encouraging patients motivation with walls of encouragement, to even following up GP appointments, so they don’t have to have other appointments, is there a way we can hang out where the patients are to make sure their complying to their treatment plans or their rehabilitation plans?
I did my TED X talk on the power of communication and communication is a basic human right and this new technology now that allows patients who are unresponsive, who might be able to hear and think, we know 40% are potentially misdiagnosed as vegetative anyway, and this allows you, without any activation from a nurse or anything, to have this technology between the patient and the remote visitors carers that give them stimulation and communication. I think communication’s so important and I’m sure my friend who here, Katty, would bear that out.
But, carrying on from Katty, Katty is finished and she’s got long term locked in syndrome and we met a few years ago and I put her in because I admire her as much as I do Christine. She’s the happiest woman with her husband Henny that I’ve ever met in my life. And she can’t do very much. She’s the most inspiring woman there is and just to say that, even if you can’t do anything, to have the quality of life and the level of happiness it’s truly humbling.
So, going back to my goals: I did walk upstairs, I did walk out of hospital. As you can see there, the big smile on my face, and the YouTube video’s out there if you want to go and see it, but just look at my channel. And the most important thing I want to share with you, my belief to be home, hugging my kids, telling them I loved them, to go and do after school activities, to be a normal mum got me everywhere, and do you know, just twenty one months after my brain stem stroke, where I was told, my husband was told I’d never walk, talk, or do anything again, and go in a nursing home to live, this happened, and I’ve very, very proud of it.
And that’s it.