Patient Involvement, Or Not?

Where is the patient involvement in designing the DMT guidelines for Multiple Sclerosis?

According to the NHS: ‘People and communities are important to us because they help us improve all aspects of health care, including patient safety, patient experience and health outcomes – giving people the power to live healthier lives.’  

The NHS England algorithm for using DMT’s says: ‘The purpose of this algorithm is to provide a framework to aid decision-making for multiple sclerosis (MS) specialists and patients, to help reduce excessive variation in practice, and ensure safe and effective prescribing. It is understood that there may be situations where there is no single ‘right’ or ‘wrong’ therapeutic approach, and different experts may reasonably hold different views. ‘

Despite these unequivocal statements regarding ‘the patient’, Multiple Sclerosis patients have no input whatsoever into the decision making process about what drugs are used in MS and when. It is as if the treatment of multiple sclerosis is so complicated, the syntax so specialised, that unless one is a specialised neurologist or similar then comprehension is simply beyond them.

Keeping the patient voice out of one of the single most important areas of our treatment speaks to the very old fashioned patrician Doctor knows best attitude. This gives the rhetoric around patient involvement a very hollow sound. Before the reply is made about MS Charity consultation reflecting the patient let’s put this to bed too. There are so very few patients with Multiple Sclerosis employed by these charities that when they claim to speak about the patient experience, that also rings hollow. Sure, you can ask them for input, to reflect patient attitudes etc but the replies you will get are mediated by people who do not have MS and, try as they might, can’t accurately reflect the patient experience.

If genuine patient involvement in MS care is to be more than just a phrase uttered by policymakers, to salve their own ears, by hearing themselves say it out loud at every available opportunity, then MS patients need to be directly involved in designing the NHS DMT prescribing algorithm. Repeated second-hand ad-hoc personal experiences or the representations made by well-meaning intermediaries are not a reliable or genuine substitute for including patients. Patient with lived experience of MS must be at the table and involved in both the discussion and the output. 

Until there is unmediated patient involvement in the construction of the prescribing algorithm, it is difficult to understand how the experts in MS patient care can do this while knowing full-well of the failure to involve the very patients who will take these treatments in the decision-making process. We, patients, are a very strange and diverse bunch when compared to the comparative uniformity of highly educated and very scientifically/technically/financially learned people who decide about drugs for our use created. The issues caused by allowing patients into the hallowed backrooms of clinical decision making are many and varied. Heck, I imagine disabled persons access/accommodation would rocket near the top of the agenda! These are not insurmountable hurdles, just different challenges.

Putting the patient’s names on the guidelines, having actual patient input into them is the very least we ought to expect, not the most we can hope for. 

Dear NHS, we want to be involved in the way that you say we should.

You talk the talk, but will you walk the walk?

Visualising the future of a patient’s MS is getting easier by the day

The concept of ‘was that my last good day’ is a permanent spectre in my life. I no longer get as rattled by the unpredictability in quite the way that I used to, but it never really goes away. For example: I had an amazing weekend just gone. I Walked 29km over two days, went to a pub for the first time since lockdown, baked some fresh bread, saw friends etc. And now, Monday morning, I wake feeling a bit weird and a bit off. Hard to explain but my mood is one of inexplicable hopelessness, I feel shattered already and am generally quite sub-par. Go figure.

One of the stranger things about having MS is that you just have to accept is the complete unpredictability of it all. Hot/cold, happy/sad, pain/no pain. see/double vision, you get the idea. If you don’t I reckon you’ll go stark staring mad in a matter of months. But back to the present wobble…

All of a sudden, across my mind, flits the well worn thought of, ‘was that it’. Rational Me knows that this is ridiculous. Still, rationality takes a back seat and Irrational Me triumphs. I know this is a bad and dark hole to allow myself to be dragged into and it is a Herculean effort to force Rational Me back and send it on the daily task of kicking all the silly Irrational Me thoughts and fears back into the dark recess where I think they ought to stay.

Talking of dark holes, these are the parts of the mind that don’t show up on my MRI and are not easily quantifiable to my neurologist. They are impossibly hard to describe and when I get to my once annual review they seem like an odd abstract thought that, in trying vainly to describe, will take away from that valued visit for the ‘serious stuff’, making me loath to spend those precious minutes trying to explain the inexplicable. 

There are so many things to measure with MS, and the neurologists want to hear about them because that is an efficient clinic visit. Recording the measurables. How well you walk, pee, see, swallow, and so on. They like those sort of metrics as they can place you somewhere, measure stability or decline and tell you where you are in the journey of decline. The anxiety stuff?  The demons, the black feelings and so on? Most prefer to leave that to the staff of P-Wing because there is no EDSS equivalent that can describe the daily rollercoaster of emotions, that’s life. I always leave feeling as if everything that has been said is caveated with the equivalent of a warning on an investment product about the past performance being no guarantee of the future. 

Annoying as that is to both parties, in Multiple Sclerosis there has never really been a way to look into the future and reliably predict either the potential onset, extent, and/or severity of the illness in general or the relapses that characterise the earlier stages of the disease. So when they say that it is impossible to tell, they aren’t joking. Watch and wait is their motto. Hope and pray is mine. Either way, both are as uncertain as the other. They can measure what has happened or, at best, what is happening, and in fairness, who likes dealing in the what-ifs and the maybes? I imagine that every neurologist that has ever had to deliver a diagnosis of MS to some poor soul has been met with a version of, “what is going to happen to me?” and it is a very difficult question to answer. The ability to quantify anything with regards to that question is v tricky, and, in general, by the time a doctor has made it to the heady heights of Consultant they are well-versed in the delivery of difficult messages such as, hmmm, not sure really, we’ll have to wait and see. No looking into the future here. Move along. 

But there are some glimmers of hope! Whilst there isn’t the precision that I or my neurologist may want, these days there are tools that offer the opportunity to go beyond an educated guess.

I can think of three emerging tools that give real hope for taking a forward view. Neurofilament Lightchains (NfL’s), Optical Coherence Tomography (OCT), and Artificial Intelligence (AI) analysis of MRI. 

 1 – Starting with NfL’s, these are things that can be taken from the fluid that is drained during a lumbar puncture. They serve as biomarkers, a fancy way of saying signposts from our body, regarding three main things:

  • Risk of progression. E.g.: The how bad is this going to be doc, question?
  • Clinical disease activity. Not what you can or can’t see/elicit from patient recollection of symptoms or tests done to determine the level of effect at the time but what is actually going on in my noggin. 
  • Treatment response. Have you ever wondered if the DMT you are on is doing anything? I have a standard reply to people when they ask about DMTs for MS. I explain that unlike a paracetamol that does or doesn’t fix a pain, the DMT is taken with a belief in science and large scale clinical trials. They say it works and I have to believe that.The neurologists are in the same boat. We all have to believe in science that a good DMT increases the time between relapses and reduces the effects of a relapse when we do have them. We will, it is a progressive illness. A very rare few may experience no measurable progression in life. They are the exception that proves the rule.
From a Barts MS blog article

2 – OCT scans are a bit like looking into a supermarket barcode scanner when you have one. It feels like little bars of red light flitting around trying to determine the price of your eyes! What comes out though is amazing. They map the retina thickness and condition and compiled over time they allow an expert to see into the brain through the eyes. The presence or loss of ganglion cells (I am emphatically not an expert) also serve to let the doctor know what is happening in the brains of the patient. When they are done as a matter of course (not right now) they’ll also need someone to understand and interpret them, or they are pointless – this probably isn’t going to be your neurologist.

Presently, it still does not make a difference for the clinical management. But it’s very promising and much more convenient than brain volume measurements on MRI, and is probably going become very important in the future. 
This is a very promising biomarker as it is easily accessible and reflects brain damage and will allow the neurologist to quantify how neuroprotective a treatment is.

Part of my recent OCT scan
Part of my recent OCT scan

3 – Finally, AI examination of MRI scans is allowing doctors to identify different manifestations of MS. By seeing these they can better understand what is more likely to happen. An added bonus is that once a computer is sufficiently well trained and is running the right software it can be relentless. Humans get tired, need coffee, are distracted, miss things, misinterpret things, however diligent we are. People try their best but it is a boring and repetitive task gazing at slice after slice after slice of an MRI. To have a computer do that heavy lifting is infinitely preferable. This means that the human expert neuroradiologists get notified of the results and can verify and check the anomalies a computer picks-up that may go unnoticed to a human being, however good they are. 

AI looking at layers of the MS brain MRI

If you aren’t a little in awe by now then you need to get checked. This is amazing. For the very first time, there are tools and technologies that will allow our doctors to treat us for what they know is going to happen and not what they think might happen. It is the moving to precision treatment and not hitting everything with the biggest hammer they can lay their hands on. It is allowing patients to understand why their neurologists offer the choices they do and say some of the things they do. These days, only the most backward neurologists think MS is an on/off sort of disease. To say you aren’t progressing is inaccurate. A better phrase is, ‘with the tech we have available we can’t see anything at the moment.’ 

These tools are years away, not decades. The next time I see my neurologist I’ll be asking them how they think they’ll be deploying these technologies to treat me better? As for the mental strains, I still don’t know where to begin with these. I have found that it is likely to remain my job for a long time to come. But things do get a little easier when we know a bit more about what is around the corner.  Go science!

With thanks to Dr Sharmilee Gnanapavan (@neurognanapavan) and Dr Ide Smets (@SmetsIde) for ensuring I wasn’t talking total rubbish.

For some more in-depth reading there are links to some of the most recent work:

NfL’s – https://multiple-sclerosis-research.org/2021/04/do-you-know-your-neurofilament-level/

OCT – https://multiple-sclerosis-research.org/2021/04/only-your-eyes-can-show-the-suffering-dixit-fausto-coppi/

AI/MRI – https://www.nature.com/articles/s41467-021-22265-2

The Gift That Keeps On Giving

Can you remember growing up when the school fete always had a drum with the numbers folded up and for the final event of the day some older worthy cranked the handle a few turns, dipped their hand in, and produced a little scrap of paper with a flourish? With great care, they’d unfold it, squint at the number and then read it out. The hushed crowd would consult their row of ticket stubs bought to support the school under the pretence that they wanted the value basket of meat or the half-case of Blue Nun? When I was a kid that was the highlight of the day. The anticipation, the crushing defeat, the look of triumph on old Mrs Miggins’ face as she trousered the plonk? All of that. It was the competition of the year. You wanted to win it but you never did.

How about this for a lottery win? You’ll have to change gear – I’ll wait, the gears are a bit worn and unlubricated at this point and are altogether slower if you have MS – and remember the time you actually won another lottery. One that you had never heard of, one that you don’t recall entering, and one that you definitely didn’t want to win. When you did find that your number had been chosen you couldn’t just decline it or quietly re-gift it after a respectable amount of time had passed?

That is what it is like to get an MS diagnosis. The confirmation of diagnosis conversation is about being randomly gifted something you didn’t want, can never give back, gets worse over time and you have for life. In the lottery of life, you lost out big-style.

You can break many bones (as I have) and perhaps you are never as good as you once were, but they can be put behind you with time and physio. A well-known London Neuro has had some very unfortunate first-hand experience of just this recently. Thankfully, they are recovering quite well.  However, MS is not one of those things you can recover from. MS is incurable. It is manageable for most people, but it is incurable for everybody. You don’t make a recovery no matter how hard you try.

In the last 15 or so years, a plethora of medications to treat the disease have come on the market. None of them are cures, they are all just chemical brakes. Some are the old asbestos-lined drum brakes, and some are the latest carbon-ceramic ones. They are all just brakes though. They can slow down the process, but they can never stop it. The overall aim of these disease modifying treatments boils down to two components. These are:

  • to delay the onset of disability and
  • to reduce the severity of it when it occurs.

That is it.

No cure.

None.

Just brakes.

MS patients are terrified by the thought of losing their physical and mental abilities in the insidious creep of the disease. For many of us there is a tipping point where we go from oscillating between good and bad, into a gradual decline where the only update you hear is about getting worse.

Having MS is about becoming progressively disabled as you age. The accrual of some of these disabilities is visible to others though many are not. Walking with sticks, needing a wheelchair or a colostomy bag are things others see. The crippling fatigue – that you can only describe as tiredness, which doesn’t do it justice – is one and the so-called cog-fog is another but no one sees it. You feel lazy and a slacker and want to do better but you just cannot get out from under this damn feeling of being Sisyphus.

The idea of not being able to string two thoughts together is also incredibly annoying. It is a million times more annoying than the feeling you get when you arrive in a room and stand there blankly knowing you came in for something but know that you have totally forgotten what that thing is. It is that. With bells on. It is the frustration of knowing you are mentally underperforming, knowing you can do better, knowing you used to be better but no longer being able to connect it all up as easily, if at all. And the most frustrating thing of all that? Knowing it is the MS deterioration and will never improve.

You can treat some of the effects of MS with other medications, be they drugs that help tight muscles unwind a bit so you can walk a little less balled up and with less pain, to drugs that help clear the cog-fog a bit. They are all sticking plasters and nothing is the same as it once was.  I feel pathetically grateful for these little bits of relief.

There are not that many chronic diseases that are as long-lasting as MS and as disabling as MS. These days you rarely die of MS, you die with MS. This rather sorry fact means that it is hard for people to take it as seriously as a person you know  (has happened to me a few times) who is killed by cancer in 6-24 months. Their struggle becomes heroic in the eyes of people they have never met. Yes, they fought it hard and nobly. Every single day. And it won, every single time. And then, over time, most people forget them. This is the bugger with MS. It just doesn’t go away and it doesn’t just kill you either. It is there. Gradually disabling you. And you know it and people forget you.

And yet the same refrain keeps playing; MS is incurable.

MS means you will deteriorate. Slowly at times and faster at others but all the deterioration shares a common theme. It will not get better and it cannot be reversed.

I write this, not as a pity party piece, but because I am increasingly frustrated with the care I am receiving. Or not receiving.

With previous doctors, I never questioned the idea that they got it – my MS and MS in general – to a greater or lesser extent. By getting it, I mean at a human level. Not just the aetiology of the disease, the examination of stained slides under  microscopes, the conferences, the papers, the books, but the way this ghastly disease is ever-present in my life and my mind. Every day. Wondering what the next episode will be. As a patient you just want your neurologist to have a degree of empathy with how it feels to have MS.

Not how MS feels, but how it feels to have MS.  They are two different things entirely.

For the first time in 26y of MS I suddenly feel that I no longer have a neurologist who shares my treatment goals, gets me, gets my attitude to life and my attitude to MS. Instead they are a complete ‘book smart but not people smart’ sort of person. I think they find it very hard to actually engage with patients and aren’t a great communicator. It certainly isn’t intentional, just quite tone deaf to feelings.

On this journey you need friends and allies and most of them come from the medics that treat you. You need to turn to them and you want to rely on them and when you suddenly feel as if your only advocate is you, the main researcher is you, there is just one person fighting your corner (hint: still you) it is quite upsetting. Discombobulating is a word I like the sound of but rarely have any real reason to use. Here it is perfectly onomatopoeic and describes the feeling exactly. It is discombobulating. A team effort has suddenly turned into a whack-a-mole process where you are constantly anxious that you have overlooked something, failed to ask a question, failed to take a stand or overlooked something you didn’t know you didn’t know but it turns out it would have been helpful if you did know the thing you didn’t know you didn’t know. And your brain ain’t what it used to be and you know that your mental decline alone is probably allowing things to pass by unremarked on. Things you hope that the neurologist will remember.

On top of this I chuck in ageing – I am 51 now – into the pot and know that there are several things that don’t happen after 55 because you cross some invisible Rubicon which disqualifies you from doing things, like taking part in a clinical trial, for instance. Just the idea that one day in 2024 a switch is flicked and my eligibility is no more is quite worrying.

I want stem-cells. AHSCT, which is the nearest thing to a reboot of the body’s immune system, is not a guarantee that I will skip merrily into a halcyon future. I get that. It is, however, the last shot for me. The fact that my neurologist is a hand-wringer par extraordinaire means that they don’t really believe in that. Perhaps they might be a bit more sympathetic if I were very disabled – a doctor way of saying that they know it is risky and if you die it was your last shot so worth it – but they don’t see it as something for people who are not yet as disabled, like me.

I think that idea is nuts. They have no idea what it is like. If I, an informed patient is willing to take the risks then I struggle to see why I can’t do this. From a pure economic viewpoint I am on an awfully expensive 6 monthly infusion and if nothing changes I am likely to make it another 20 years. That is a lot of money. I will decline in that time and I will need greater input from the health care system, extra services like physio, an FES machine for my right leg, orthotics, the drugs I already take to make the infusions not ruin my skin, the ones to help me grasp at a semblance of mental normality for a few hours a day, and so on.

AHSCT is about £90k privately. However, if it is just costs being covered in the calculation then I imagine it is a fair bit less on the NHS. It either works long term and everyone is a winner or it wears off in a few years, so it is break-even: or at worst I am killed by the cure and – financially speaking – the NHS is the winner. There are variations in between but you get the gist. My beef is that my attitude to risk feels overlooked despite how informed I may be.

This is not all Negative Nancy stuff. Life goes on. I do stuff, I volunteer for MS charities, I pursued PhDs for a while but have failed so am going to take some professional qualifications to try and find work that I can fit into the restrictions on my life because of my MS. I wake up every day and am thankful that when I open my eyes I see daylight and that I am able to do many things some of my MS friends cannot do. I admire how they get through it every day, wonder if I could show the same fortitude, wonder when it will be my turn, and try to keep such thoughts from my head as they are not conducive to being productive.

Overall, though, I am really dogged by the neuro thing. I think I’ll have to change. That means losing a relationship with one of the most amazing MS nurses I have met and schlepping to a hospital that isn’t on my doorstep. The thing with the NHS is that it is theoretically possible to do this but if everything goes like clockwork it will take a good year. And in my head the countdown to 55 is becoming ever louder.

It Is My Cargo

I wanted to hate it and I am told that I should hate it. Hate it like one hates a sworn enemy, that I must fight it and that a true fighter calls themselves a warrior. However, I do not hate it and I am certainly not a warrior. Truth be told, I always feel much closer to a devout coward than any sort of warrior.

Hating it and fighting it consume so much of the energy that I ought to conserve to manage my life, and who wants to live life on a permanent war footing anyway? That must be tiring and living is tiring enough; I am idle and lazy, and am not getting any younger so where is the fun in that?

If it is a war, it is an unwinnable one. Given that we often work so hard to deny the inevitable endpoint by avoiding the topic of the hard stop faced by all of us, we end up skirting the unwinnable part of any war on It.  But the journey always ends, for everyone. That is the only certainty. That and taxes. However bumpy the journey and whatever the cargo we carryif it is treated as a series of skirmishes and not a grand battle (the kind that needs a warrior) then it becomes far more manageable and far less tiring.

Reverting to the topic of youth for a moment longer, there are benefits in getting older and it is worth noting that when skirmishing with it, youth and enthusiasm are rarely as effective as age and guile. It is the application of cunning and intelligence, combined with a good dose of backstabbing and trickery, both tactics of age, that are more effective and can be a great deal more satisfying at times.

To manage it effectively one must first understand the classic ‘How do you eat an elephant?’ conundrum. You cannot do this in one sitting. Instead, you must cut it into bite-size pieces. And (to stretch the metaphor we’ll make it an everlasting elephant), in order to keep things interesting, you must learn to make a variety of dishes. Some are grand efforts and others are best served to the dog. That is the way of things and the way of life. Whatever additional or different wrinkles get added to your life, the tactics remain the same. Deal with it piece by piece. Long-term plans are for fools. Ask anyone who has tried.

The additional cargo can also be viewed as interesting, because it is. It grants us a journey that stands out from the other boring and regular ones that most of our fellow travellers have. It requires a special understanding, a greater level of engagement. And, if you do engage and do not look away then it makes a better person out of you, it sharpens you. It does not dull you.  It may be a biological bully of an enemy, but it is the type of enemy that I want to keep closer than any friend.

I want to know its strengths, its plans, and I really want to know its weak points. We will not stand off against one another posturing on a battlefield of prejudice and misunderstanding. I will speak sweetly to it, wrap my arms around it and bring it in close whilst making soothing sounds. Then I will hit it hard, where it hurts the most and where It is weakest. It is a bully and a they are never swayed by verbal bluster, they are defeated with by your actions, your lack of fear. Even if, underneath, you are petrified. Soon you become less afraid and that is liberating.

My actions will bend it to my will. I will poison it with the most potent elixirs that science can find, and I will adjust my life to hurt it and hinder it at every turn. This is not a one-time event; this is an ongoing series of skirmishes. I may not win them but if I can hold it to a score-draw then I will take that.

After all, the journey ends the same way for all of us, despite the different and interesting cargoes we carry. I intend to enjoy the rest of my journey. It is not all about the cargo. The journey through life itself is a many splendored thing that I can shape to my will. If I do not, then it will become heavier and heavier and I will see and feel nothing but my cargo: and I will have lost.

Dominic Shadbolt May 2020