FAQ

Frequently Asked Questions to Dr Peter Scott-Morgan

What is the most important thing you’ve learnt from your experience of living with MND? 

By far my most important discovery has been that MND is not the ‘invariably fatal’ disease that it’s usually described as – even by those with scientific backgrounds who ought to know better! In reality, those of us with MND nearly all die from lack of food or (more commonly) lack of air. These are ENGINEERING issues, not really Medical ones at all. Our guts and our lungs carry on working perfectly, it’s only the muscles needed to get food and air in that shut down. That’s relatively easily solved by a feeding tube, Non-Invasive Ventilation (NIV) and in due course – when NIV becomes far more difficult – by Tracheostomy Invasive Ventilation (TIV). Without those, we die. With them, MND is closer to an untreatable Chronic (rather than Terminal) disease. With the right engineering, and with a bit of luck, we may after a long life eventually die of heart disease or cancer rather than MND. But, for a variety of reasons, in the UK less than 1% of us choose to have the interventions needed to stay alive. So, most of us die within two years of diagnosis – just as it was fifty years ago. Personally, I think that’s a shame.

I understand that you wrote a book called ‘The Robotic Revolution’. How can robotics assist someone living with MND? 

Yes, that was my first book; my PhD in my early-twenties was in Robotics and ever since then I’ve remained passionate about the exponentially growing power of Hi-Tech to transform everybody’s lives. So, as you’d expect, I see Robotics and Hi-Tech as the first line of defence against MND. Literally within five second of getting my diagnosis, after the initial emotion of surprise, my very first coherent thought was: “This is only a problem of my voluntary muscles and the part of my brain that controls them. We’ve been using electro-mechanics and AI to substitute for those for decades. I’m on my home territory with this one. It’s a solvable problem. Thank goodness!”

If you could leave Earth with one legacy, what would it be?

Simple: To forever change the world so that anyone with Extreme Disability (even through ‘old age’) can choose not only to stay alive but to use Hi-Tech to THRIVE! Nothing more, nothing less.

What is the most interesting/ surprising thing you’ve discovered about yourself since being diagnosed with MND? 

I’ve never campaigned for anything in my life. I’m just not that sort of a person. I’d never written to an MP, never joined a march, never gone onto social media to state a case, never given an impassioned public speech to try to change people’s minds. Now I’ve done all of those things. And I’ve only just got started. Why? I discovered that many people in the UK are simply not being given full and up-to-date information about their options – especially around TIV. Worse, I found that some people who do want to have TIV are being told: “We don’t offer tracheostomies for MND.” Some struggle even to get access to Cough Assist machines. I have had unbelievably wonderful support from the NHS where I live, in Devon. So, it blew my mind that others weren’t getting the same support. I found that I just couldn’t let it stand. I’ve started a Right to Thrive campaign, and my MP (Kevin Foster, Torbay) has enthusiastically taken it to Westminster.

At present, it is a local decision for a Tracheostomy and Cough Assist to be made available to you if you have MND. The most recent data show that less than 1% of people with MND in the UK receive this life-saving combination; in Japan it is over 30%. I’m certainly not saying we should all choose the same thing. But I do passionately believe that everyone with MND deserves the same right of access to the life-sustaining Tracheostomy and Cough Assist they may need if they choose to fight for a fulfilling life despite their diagnosis. Instead, some people, having chosen to live and thus the Right to Thrive, are being denied access and, in effect, told they must die instead – only because of where they live. At its heart, therefore, the Right to Thrive campaign is about Access, Choice and Equality – everyone with MND deserves the same ACE treatment, not a cruel postcode lottery.

What does the future of assistive technology look like in your mind? 

Cutting-edge Hi-Tech such as robotics, AI, Virtual Reality and Enhanced Reality are set to revolutionise MND, offering the dream that even those who are Locked-In can nevertheless choose to Thrive. For those who want it, we in the MND Association intend to make this dream come true. To that end we’re gathering some of the most innovative and influential organisations and individuals on the planet to form a Technology Think Tank with a very simple mission: To Change the World. I am extraordinarily lucky to have been asked by Nick Goldup (Director of Care Improvement at the Association) to Chair this Think Tank, and it’s turning into the most exciting project I have ever been involved in throughout my entire life. We’ve got some really awesome corporations signing up, and we’re going to tackle the most fundamental challenges facing Extreme Disability. What does the future of assistive technology look like? We’re going to write that future! Watch this space!!

What is the most fundamental aspect of a good quality of life in your eyes?

Love. You can take away my ability to walk, I’ll use a robotic wheelchair. Take my arms, I’ll get some form of exoskeleton to help me reach out and touch those I care about. Take my voice, I’ll use a pre-banked voice synthesiser to talk with them. My personality? I’m programming an avatar of my face that will smile at them and move when I speak just as I used to. My spontaneity? AI, and eventually I’ll be even cleverer at remembering things than I am now. Eating and going to the bathroom? I’ve already had the first ever ‘tripleostomy’ (feeding tube, suprapubic catheter, colostomy) and, if I want to, I can now eat and go to the bathroom while I’m asleep – which is really useful if I’m busy. So, only give me Love and I’ll find a way to keep giving it back. Because I’ll have more than enough reason to solve any challenge you throw at me…

Would you rather go back in time or go forward in time? 

I adore history, and I’d love to spend time with people like Ramses II, Plato, Alexander, Leonardo, Turing. But if you forced me to choose, I’d definitely go far forward in time. The future fascinates me and, despite how extraordinarily dumb we can be as a species (not least in maxing-out the credit on our home-planet account), we are indomitable. I have a strong hunch that in due course we will reach out from our tiny home and spread across the stars. Either we’ll find other intelligent lifeforms (which would be scary and awesome) or we won’t (which would be equally scary and awesome). Either way, we’ll change our section and era of the Universe. It’s what we do. And it would be utterly amazing to see what humankind is like after it stops being so adolescent and grows up a bit.

I’m just wondering what you think could help ensure that patients living with MND are treated in a way that’s right for them? 

I think it must be terribly difficult to be a healthcare professional faced with MND. Even though everyone has a 1-in-300 chance of getting MND in their lifetime (which doesn’t feel ‘rare’ to me at all), such a large percentage currently die because they don’t have the interventions needed to keep them alive that it feels much rarer than it is. As a result, most doctors have little or no exposure to MND. And when they do, it’s often because of problems. So, they build up a rather negative view of what life with MND is like, and sometimes rely on – what to me at least – comes across as a dangerously out-of-date notion that ‘the kindest course is not to prolong inevitable suffering…’ As a result, some people with MND are not told about full Respiratory options, some are not offered treatment for other diseases (say, a heart bypass), some are actively lobbied not to unduly extend their lives.

Although I understand why some doctors may act like that, it nevertheless makes my blood boil! It’s not a doctor’s decision to make. Each of us with MND should make our own decision. And to do that, we must each be fully informed – not sometimes fed a biased or heavily-censored version of the options available. I am the first to fully support those with MND who, for example, choose not to have TIV; under different circumstances I might be one of them. But I do not support politicians or NICE guidelines or local NHS funding directors or healthcare professionals if they try to warp the decision-making. Making the right choices with MND is tough enough without authority figures making it harder.

How do we get a level playing field? I think the quickest way is a two-pronged intervention: Let everyone realise that there is currently inequality in how we treat MND (no one wants that); quite separately, broadcast more and more examples of people who chose a different path to the historical norm and are pleased that they did. That way, we won’t need to persuade the medical profession to change its mind; it will collectively change its own mind.

How do you look after your mental health when living with MND?

I’m exceptionally lucky that I happen to have a relevant professional background and a suitable mental attitude to cope with MND. It sounds perverse but the scientist in me finds the opportunity of spearheading cutting-edge research into applying Hi-Tech to MND really exciting. 99% of the time that keeps me distracted; 1% of the time I remember that it is me that is the subject of the experiment! But then Teenage Peter gets all excited again about the supercool technology I’m going to get to try out only because I’ve got MND. And suddenly living with MND isn’t all bad

You seem very calm about your MND – is that because you draw comfort from religion?

I’m a scientist. It’s the 21st Century. I feel absolutely no need for supernatural explanations of any aspect of the Universe – least of all my MND. If you think about it, not accepting mystical or paranormal reasons for why things happen sort of goes with the job-description of being a scientist. Otherwise we could all just declare victory and go home early.

Don’t get me wrong, I have many friends (particularly in the USA) who are religious. I get it. I totally understand why if you’re religious it might sometimes help some people somehow to cope with something like MND. But definitely not me.

Given the way that my brain works, I am really glad I am not in the least bit religious; it would be terribly distracting to me at the moment. I’d be in total turmoil, constantly trying to work out: What does it all mean?!? Why me? Why now? Is it a test? Is it a punishment? Should I be praying more? Should I be trying to negotiate some sort of deal with the self-same omnipotence who in her infinite wisdom gave me MND in the first place? I’d be going absolutely bonkers! Believing that it was all part of a Grand Plan would only fixate me on trying to work out what the Plan was! That’s who I am!!

In contrast, I am completely at peace with the statistics of my situation. MND is actually far more common than most people realise. It only feels rare because few of those diagnosed with it stick around long enough to become Locked In. 90% die, or let themselves die, within five years. So, there are never very many people with MND around at any one time. But in fact, the likelihood of anyone contracting MND sometime in their lives is around 1 in 300. In my book, that’s quite likely!

Have I been Unlucky? No, not really. It’s just that I happen to be that statistical outlier. If it weren’t me, it would be you. Or someone else. But 1 out of every 300 of us has to be special and get what I’ve got. Otherwise, one-in-300 wouldn’t be the odds. Things just happen.

With that said, let me be perfectly clear. I may not have religion, but I draw immense strength and comfort from my exceptionally deep Faith. In three things.

Firstly, I have total faith in Science. Not that it is right – I know it’s not. But that it will keep improving. And, unlike dogma, will steadily be less and less wrong. And that if anything can improve my life with MND, it can.

Secondly, I have huge faith in Humanity. Not that everyone is kind – I know they’re not. But that despite the vile cruelty and repellent inhumanity of some, our species as a whole is quite magical and extraordinary and indomitable. And despite our supreme stupidity sometimes, together we’ll work things out. It’s what we do.

And thirdly – in flagrant contravention, I know, to the trite, overused Hollywood stereotype of the ‘cold, passionless scientist’ – I have an unshakeable faith in the power of Love. Not that being touchy-feely to everyone will solve anything – I know it won’t. But that when all else fails, when there is no more hope, when against all the odds no sane animal or rigorously-logical robot would ever carry on, then – despite everything – the irrational, stubborn, absurd, self-sacrificing, blind, unstoppable, magnificent, all-conquering, unconditional love of one puny human-being can reveal itself to be one of the most formidable forces in the Universe. And, just because I know it’s not a miracle, but instead ultimately comes down to hormones and genetics and neural networks, does not stop it being completely mind-blowing and wonderful and glorious. That’s what I adore about science. Just because you discover how magic works, doesn’t stop it being magic…

If you manage to live then you’ll be Locked-In – so, aren’t you scared or depressed?

Honestly? Being scared and depressed are definitely hiding in me somewhere, but for the moment I seem to have both of them well under control. As a result, I have never yet felt either scared or depressed. Finding myself with MND isn’t ideal. It’s not what I’d have chosen. But it is what it is. And there’s a lot that can be done to make my life vastly better than it was for the generations before me.

Of course, I’m not completely immune. I totally appreciate that where I’m heading is a potentially scary and depressing place. But it’s a bit like as a student at uni when I used to go mountaineering and potholing. Even back then, I certainly wasn’t an adrenaline junky. I wasn’t one of those people who claim that when they face death they ‘feel so alive’. I likedbeing alive and I wanted to keep it that way! Getting into perilous situations did not give me a buzz.

But sometimes I did unintentionally find myself at risk. And as a result, sometimes I’d sense a subconscious-panic building just under the surface – and I’d use my conscious mind to push it back. Stay cool. Stay calm. Fall back on training. Think through the problem.

Today, coping with MND feels much the same. Keeping panic at bay. I suspect it’s a very ancient skill our ancestors knew better than us. Seeing the eyes of wolves at night. Unable to see the evil spirits also lurking in the dark. But daring to stay to defend the livestock anyway.

Nevertheless, although I’ve never felt fearful, I have occasionally felt tearful. For a few seconds or minutes. Never more. But that was always triggered by thoughts of those I love. How much I will be restricting them in the future. How I won’t be able to hug them properly in the future. How I won’t be able to kiss them properly. I suspect I’m going through a sort of grieving process.

Worse, in the early days after diagnosis, was the inescapable feeling that – even though intellectually I knew that it simply wasn’t true – the weight of ‘evidence’ on the internet and elsewhere made it clear that I was going to die relatively soon.

This was compounded by the discovery that I’d been placed on the Gold Standard (initially flattering, until I remembered that it was a euphemism for End-of-Life Care). Further compounded by the managers of an old work pension scheme saying they were willing to pay out early because statistically I would not reach pensionable age.

And therefore, I’d miss out being with my soulmate. Miss out growing old together. Fail in my unspoken duty to be the one who’d eventually turn the lights out.

But that premature grief was caused by something that simply wasn’t real. It was basically caused by sloppy reporting. By statistical analyses that included all those who never took up the options to keep themselves alive.

And because I had the scientific training to deny this deluge of ‘fake news’ however overwhelming it appeared, within a few months of diagnosis I was (almost always) able to think the same tragic thoughts but no longer feel tearful – because my subconscious now agreed with my conscious that, almost certainly, I was not going to statistically curl up and die on schedule.

So, with Imminent Death reassuringly shoved back into the same box that each of us keeps it in for nearly all our adult lives, there was little left to be tearful about.

And why not fearful? Simple. Because in a rather perverse way the future looks like it’s going to be rather exciting. Certainly fascinating. In a ‘boys with their toys’ sort of a way, potentially even a little bit fun.

Think about it. I grew up loving Science Fiction. By the age of seven I was determined to get a PhD. Because that’s what Dr Who obviously had, as he wasn’t a medical doctor. As a teenager, it was drummed into me that thanks to Science you never had to suffer profound disability. You became the Six Million Dollar Man. Or Davros, with his army of Darleks. Or Darth Vader. Or Iron Man. You became better than you were before. Better. Stronger. Faster.

And then I became a Computing Scientist. And then I got the PhD I’d promise myself as a kid. In robotics, for heaven’s sake. And I was taught about AI and Neural Networks. And I began a lifelong fascination with the human brain. And, without really thinking about it, I increasingly took for granted that the human body was, in effect, a glorified life-support system for the brain.

Seriously. With a background like that, how on Earth would you have expected me to respond to the news that my body was shutting down?!? Obvious: A once-in-a-lifetime opportunity to give my brain a much-needed Life Support System upgrade.

Those long-established neural pathways left by my teenage-self were ecstatic. They still are.

I suspect I currently feel a bit like a one-way voyager will feel in the far future preparing to launch on a Scientific Survey to a distant Earth-like planet. You know you’re giving up almost everything familiar, but the New World will be eerily familiar. You won’t return, but you’ll keep in close contact with those you care about. There are risks, but they’re acceptable. And you’ll get to play with some of the most advanced personal-technology that has ever existed in this corner of the galaxy.

Far more than that. What you can potentially achieve has never been achieved before. You have a chance to push back the frontiers of knowledge, to experience an alien world in ways nobody has ever been able to explore it before, to change perceptions of the unknown, forever make it easier for those who will follow after you. To boldly go where no one has gone before.

Hollywood had made blockbuster movie franchises out of less! What’s there to be scared of?

Where is the government’s money best spent in terms of MND care? 

Technology. Of course, I would say that. But in terms of Care (as opposed to Cure), emerging Hi-Tech for MND really is a hugely attractive investment for governments to make. Firstly, MND is a near-perfect research focus because it is so difficult; solve issues for someone close to being Locked-In and you solve it for almost everybody with Extreme Disability ranging from spinal injury to ‘old age’. Secondly, unlike any other forms of MND Care, Hi-Tech gets predictably more and more affordable; a solution that costs £10,000 today we are pretty well guaranteed will cost only £300 in ten years. Thirdly, investment into Technology for MND Care brings very rapid benefits to those of us who have already been diagnosed – in a way that biomedical investment (crucial as it is for an eventual cure) has absolutely no hope of doing. To me, government investment into Technology research for MND ought to be a No-Brainer.

I’m wondering how you deal with the many changes that you are faced with as someone living with MND (on a physical, emotional and psychological level)?

If there’s one thing I’ve learned about Change it’s that it’s a myth that “people don’t like change.” As a species we’re very good at adapting; what we don’t like is the type of change where on balance we end up worse off and we’re powerless to do anything about it. That applies to MND just as much as it applies to Corporate Restructurings. All of us with MND go through huge changes, and we don’t get much choice.

In my own case, I’ve always been very active and loved walking on Dartmoor or exploring ancient ruins but now my legs are already shut down. My arms are heading the same way and having touch-typed since I was twelve, I’ve probably only a few months left where I can very slowly pick over a keyboard with two fingers of my left hand before I’ll never use my fingers again. Having always had a strong voice, my lung vital capacity is about 40% of what it was a year ago. My head muscles, last to deteriorate, are now on their way. Not, I’ll admit, any of the changes I would have chosen. But.

I can do something about all of these – in my case through Hi-Tech. So, I am not powerless. I think that’s very important. Stephen Hawking’s famous advice regarding MND was to “focus on what you can do, not on what you can’t do.” Of course, that’s right – but I don’t think it goes far enough. I think we primarily need to focus on what we can change. How we can fight back. What stops us feeling like a victim. What let’s us stand up to that Ultimate Bully called MND. What turns us into a rebel who will never give in, never surrender, even as we’re forced into our own living straightjacket. Above all, what reminds us that there are at last some changes that are emerging on the Hi-Tech horizon that for the first time will allow us all to fight back. And Win.