Suicide is the only cure (permanent cure) for the real MS. The failure of MS research to come up with a treatment to stop smouldering MS / unrelenting disability progression is a major factor behind suicide. EDSS 9.5 is “Totally helpless bed patient; unable to communicate effectively or eat/swallow”. Would you be happy to exist like that? Getting out early seems sensible planning - not a mental health issue.
I suspect a big contributor is the loss of participation. My friends are all into Padel. It’s all they talk about when I meet them. Most of them (as do most of my family) do parkrun. These appear minor losses, but really hit home when you think about them. MS is a disease of ever increasing losses.
MS at the end stage is dreadful. Up there with end stage Parkinson’s, MND, Alzheimer’s. A trip to Dignitas to avoid the end stage hell of these diseases should be available on the NHS (for those who can’t afford it). We all die, but I’d rather take a potion at Dignitas than die of pneumonia whilst bed bound in a hospice for neurological patients.
I don't think end stage MS as you describe is going to happen to most people with MS diagnosed in the last 5-10 years on high efficacy medication. I am in 2 minds about assisted dying. On the one hand like yourself I would not like to be subjected to ongoing torturous suffering without relief and have the option of assisted dying. On the other I am conflicted and would not like it legalised because in reality many people's lungs are filled with fluid by the assisted dying procedure and they suffer a excruciating sense of drowning for an extended period of time. So in reality apparently its not a potion that puts you gently to rest.
I agree the treatments now give potential for a less disabled life. If you’ve been diagnosed in past 5-10 years the chances are your MS has been there for some years before. So it’s down to symptoms being flagged and acted on promptly. There are still many being diagnosed later in life.
EDSS10 is death from MS. I would hope that the high efficacy treatments will give MSers more years of good life. MS does reduce average life expectancy by 7-12 years. Alan Osmond (Osmond family) died this week age 76 and had MS for nearly 40 years. It’s all about the line you draw in the sand. I just couldn’t deal with an electric wheelchair, a hoist in the bedroom / bathroom, or carers feeding me / washing me. Each to his / her own. If you’ve been an active person etc. MS is not a good fit.
In the UK, suicide is legal. You can no longer be imprisoned fot attempting suicide but failing. My mental health issues predate my ms diagnosis. I object to the attitude that "the mental health issue is just a smokescreen - another excuse to dish out a pill. I take significant doses of those pills and they work. If it was a placebo effect I wouldn't have relapsed into depression and anxiety when the GP switched me to the same dose of slow release medication and recovered again 6 weeks after he switched it back to normal release.
Suicide is the only “cure” for the majority of illnesses including asthma, eczema, heyfever, osteoporosis and Varicella Zoster infection (chicken pox and Shingles virus).
I don’t believe any of the above illnesses are in the same league as MS which killed Jacqueline du Pre in her early 40s, J K Rowling’s mother in her mid 40s…. My aunt died in her early 50s from her MS and her father died a year later as he was so traumatised by seeing his daughter suffer so much. It’s the cruelty of MS that stands out - fathers unable to walk their daughter down the aisle, careers ended, no proper retirement, divorces, loss of independence…
You’re right that these conditions aren’t in the same league as MS, but they are incurable. If you have an EDSS of 9.5, you have the right to refuse a feeding tube and will die in around 2 weeks. Dying through starvation isn’t painful and I’ve seen several people with malignant disease choose this. People with anexoria do it all the time. No legal ammendment will change this. You can stop eating and drinking with EDSS of 0 if you really want.
Thank you for this. I think that I tend to share Ian’s thoughts except for me suicide would not be a mental health issue so much as a more factual and straightforward even logical decision. A few years back my father died at a few weeks before his 95 birthday. At that age he was struggling physically and medically with UTIs etc - lots of things that just made day to day to day life difficult. For his last months he was in a care home and I remember the last time I. saw him he said that he had had enough now . He then died a few weeks later.
I’m totally sure that I might well get to the same point. If life is just a hard daily struggle with absolutely no prospect of anything getting better and all enjoyment has gone is there any rational reason for wanting to continue ?
(I’ve known a few people who killed themselves and in each case it was because of circumstances that weren’t ’permanent’ and could have been fixed I.e emotional, mental health issues which once ‘fixed’ would have left the person living an active, happy fulfilling life.
(I really don’t understand the objections to assisted dying and think that some people are so horrified by the idea that all rational and humane thinking about it becomes impossible).
So in summary and for me suicide/ assisted dying would not be a mental health issue- absolutely not! Overall I have had a good life, I continue to do well in tackling MS and all that it brings and I am enjoying life. But, if it gets to the point where life is just a hard daily physical, mental and emotional struggle with nothing to enjoy then why continue with the torture. Just take a peaceful, relaxing and reflective last few weeks before reaching out to whatever is next ( probably nothing but who knows)
I agree. The mental health issue is just a smokescreen - another excuse to dish out a pill. For me it’s about quality of life eg strolls in the park, a game of tennis, a trip to a London theatre.. When MS robs you of all these little joys and you become reliant on others to help with the most basic things (washing / eating etc.) I will know that it’s time to meet my maker. I’ve sat in enough waiting rooms surrounded by MSers slumped in wheelchairs with severe tremors to know where my red line is.
I'm glad you're adding this especially as it does get over looked I'm also very aware that sometimes it is used as a excuse not to look into situations further where the ms is causing other mental issues such as dementia, personality disorder, etc we really need a follow through of care to put information together. Such as this patient has lesions (active especially although I do understand inactive ones have left brain damage aswell) in certain areas which coincide with the behaviour being demonstrated. As I run a carers group mainly on WhatsApp as the caring for someone with ms is very demanding, I have noticed a big similarity between us all we are dealing with issues all relating to mental health illnesses, most say the same line " they are a different person to who I married " most lack empathy, care, (which is understandable living with such a disease) but its more, making up lies, anger outbursts, complete personality flips and back again. Delusions, which they believe are right with no compromise. Sometimes physical abuse along side these issues. I'm only a carer and wife but I honestly believe MS actually progresses into dementia leading to all these issues under the dementia umbrella. It took 17 years till I was taken seriously and I wouldn't listen to its brain fog its depression ( oh at one point they put my husband on antidepressants at which point he became suicidal and had to come off them) another thing I think needs looking at is how these meds effect a person with brain damage and active lesions because honestly I've seen pwms and they react differently to meds than the general public that the drugs have been tested on.
Sorry for the waffle but I'm very passionate about this and I'm seeing it so often I'm not surprised that the divorce rate with pwms is so high as its not acknowledged and explained from the beginning that this is going to happen.
You are not 'only' a carer. Not a helpful reply, but be kind to yourself. I've always maintained that carers have a tougher job than those of us with MS - we KNOW how we feel, you can only guess. And we don't always make it easy for you.
Quick answer no, I've never been asked! But I do think (if your 20% figure is anywhere near correct) it should be. Of course, over the 24 years since my diagnosis, I might have been asked how I was feeling indirectly, but because I've never raised any red flags in my answers there have been no follow ups. I would be happy to be asked if I have any suicidal thoughts - but that's probably because I don't. I also think that neurologists (or MS Nurses) are not necessarily the best 'experts' - they aren't psychiatrists or psychotherapists who deal with SIs all the time and can identify less obvious answers then 'yes, I feel life isn't worth living and no one will miss me if I'm gone'.
It's a tricky one, but questions that definitely should be asked.
I think this issue needs to be addressed, so thank you. I am up in years, losing more and more function and beginning to have daunting relapses. I have my affairs in order. Here in the states, btw, I would never answer any questions re depression, due to insurance issues. I have no options for DMDs, due to low blood count issues, or so I am told. High dose cyclophosphamide with other chemo agents worked for cancer and put MS in long remission in early 90s, but those high doses can affect blood, and I also have a genetic red blood disorder. This leaves “symptom management” via pharma. Fun city. I have always been adamant that the natural sadness that accompanies degradation of quality of life and lack of inability to participate with normies should not be conflated with depression. I have an inherent upbeat funny personality, which is what people see and hear and most of all, remember. But the loss of socialization over the years has been insidious. Can’t keep up, you’re politely left behind. Also, the ableism, at least here, is insane. Everyone can use a computer! Everyone drives! Well, I don’t now. I am moving to a larger geographic area where there are family and friends and perhaps it will help. I don’t drive, but I still have a little hybrid. I told one of my adult kids that when there’s no quality of life left, I’ll rent a gas car, go in the garage with everything I want to eat and drink and arrivederci! (Unfortunately, the kid was horrified.) That’s the funny, though, that covers sadness. Seriously, we should be given a choice that when enough is enough, we ourselves get to choose. (Terrific comments on this, btw..)
My level of depression hasn't changed since the MS diagnosis. I just told the neurologist that, and that I have a therapist. I refuse to talk about it, will not take screening quizzes, etc. My experience is that clinicians who haven't been trained for this do far more harm than good.
We all have a right to commit suicide with no law changes. In the UK we don’t have the right to expect somebody else to become involved in that action. In a growing number of countries, people are losing the right to expect life improving interventions in favour of assisted suicide. The House of Lords is protecting us by obstructing this. If the assisted dying law is enacted, neurology departments will be run down, financing of research to find an MS cure will vanish and we’ll have choice taken away from us. This is the unintended consequence of a vocal minority demanding legal reform. Why would a busy doctor treat your depression when they can refer you to a service that ensures you (the high demand patient) never needs any more of their time. One of the safeguards which I would add, is a requirement that every depression intervention possible is tried before eligibility for assisted suicide is granted. This includes access to a Psychedelic Assisted Therapy (PAT) service. Unfortunately the same House of Commons which thinks we should be exterminated, thinks psychedelics are “too dangerous” and “without medical benefit”. This is simply untrue. Psychedelics (which variably include Psilocybin, LSD, DMT and Ecstasy) are available in Holland, some parts of the US and Australia. King Charles III has been put in the unenviable position of either breaking his coronation oath to uphold “thou shalt not kill” or risk a constitutional crisis by refusing to grant “Royal ascent” to the Jersey and Isle of Man laws where there is no House of Lords to protect us from the politicians.
Sorry but I do think that is a rather alarmist and extreme position to take and I’m not sure of the latest but it’s a majority of the population that are in favour of assisted dying. For me I can well anticipate getting to the point where the impact of MS leaves me very much of the view that I see no point in continuing to live just to wait for the next bout of pneumonia and more time in hospital
I don’t know about the UK position on this. What happens in the states is if you have terminal cancer, the whole medical industrial complex swings into action to keep you alive, no matter how close to death you are. However, that complex generally shuns lingering chronic illness such as MS. Other than DMDs, there is no big money to be made. Cynical? I am a bit.
Not to mention that the "palliative" chemo treatments they offer are usually worse than simply dying from the cancer. One of my oldest friends, my college roommate, recently died from pancreatic cancer. She was dx'd in August and gone by December. She was given (from what she told me) a happy path for her treatment, with a timeline of anything from one year to four. As if, with advanced pancreatic cancer. Not sure she actually believed that, she was no fool, but she did try the chemo for several rounds, and said it was the worst thing she'd ever experienced, and this from a woman with the highest pain tolerance of any person I've ever known. So yes, they offer you more life, technically, but often at an extremely high cost, with the highest cost being to the quality of the patient's remaining time. Anyway, she quit the chemo, and with the help of excellent pain meds (at least the medical establishment did not fail her in this) and hospice, she was eased out peacefully.
And I'm every bit as cynical as you, as you probably know. Way too much experience with the systems here. When I was still seeing a shrink-type person (a social worker, NOT a psychiatrist because I'd rather be thrown off a cliff that submit myself to that particular specialty) after a while she piped up with "I'm thinking you have some medical trauma", an assessment which had never occurred to me, but upon reflection, would have to agree with.
Yes, it is very alarming and delibrately killing pwMS is extreme. Here in Jersey we were promised there would be no mission creep, yet within weeks of the original proposal’s adoption a politician tried to expand it to the extent of MAiD (https://statesassembly.je/vote-detail?id=22624). Fortunately, the states assembly were more intelligent than that. You contend that the majority of the population support assisted suicide and this is born out in surveys, but there has been no referendum to support such a view. There is ample peer reviewed, published evidence that when you become more disabled, your tolerance of disability expands. How would you feel if your GP and/or neurologist started every consultation with a question about deliberately ending your life and whether you can really be bothered with (expensive) active treatment? When I was 19, I remember learning that cyclophosphamide helped MS and thinking that if I had MS I would risk it. 3 decades on, even with an EDSS of 7.0 I wouldn’t risk that. If you have MS and can’t bear the thought of becoming disabled, you can legally take your own life right now, with no retribution, law change or criminality. Liz Carr makes an excellent argument for not threatening the disabled (https://www.bbc.co.uk/programmes/m001z8wc). We recently witnessed the defeat of the McArthur Bill in Scotland, while at Westminster, the fall of the Leadbetter Bill is imminent. That is unlikely if the “majority of the population are (genuinely) in favour of assisted dying.”
I think that those in favour of assisted dying and those who oppose it will never agree. Fortunately for me I have the money to take me to other countries that, to me, have a more humane and enlightened position on assisted dying and would allow me to die at a time of my choosing with loved ones around me
As a GP you would have taken the oath with regard to “do no harm”. I haven’t taken such an oath. I alone will decide when the quality of my life is so poor that I want to end it. At this point I can go to Switzerland, not eat etc. I had one disease in this life (MS) and the specialism which covers it let me down. I know my future (thanks to the EDSS and a family member + a family friend who had this grim disease). I would hope that when I want to end it there would be a system in place where I could go somewhere local and take a pill / injection - rather than go to Switzerland or do something messy at home. No one is forcing anyone to do anything, but those who want to call it a day (not unreasonable given what neurodegenerative diseases such as MS can do) should be supported. We need to stop focusing on quantity (keeping someone alive even if they are in a horrendous situation) and focus on quality (helping an individual who has had enough pain / suffering / loss to end it).
Hi Ian, just to say I agree fully with you. Suicide, assisted suicide is a very sad complex issue but one that , to me , becomes a lot clearer and simpler when faced with the simple choice of ‘do I want to spend my last years totally bed bound , incontinent, unable to feed myself, , experiencing repeated episodes of aspirational pneumonia ( I think that what’s it called) and knowing every day is going to be another day of the same until I die from the next episode’ or do I want to end my pointless suffering now ?
It is all very sad . The scenario above is the one my aunt experienced in her last few years in a nursing home. The really sad thing is that for reasons we will never know for sure , her husband took his own life not long after my aunt went to the nursing home for what was supposed to be a temporary period to give him a break from caring for her at home . I guess he just felt that he couldn’t cope any more. All very tragic
I’m sorry about your roommate. Yes, they try to give as much chemotherapy as they can even though it’s over, and if you’ve ever had high dose chemotherapy (or any chemotherapy), you eventually just want to make the side effects to stop. Medical trauma! That’s such an excellent way to put it.
My brother took his own life after 18 years with MS. He struggled with the diagnosis being a fit and healthy 26 year’s old.
It is a sad reality of MS and many other conditions. There should be help with mental health from the start and treated as importantly as physical health.
I really disagree. Regardless of gender, age, or health condition, more needs to be done to address Mental Health. Especially for males between 25 and 45. Xx
I do not think of myself as a suicidal type of person, lots of people think I am cheerful and with a positive outlook on life. Recently suicidal thoughts have crossed my mind especially in the winter, my MS is always significantly worse when its colder. I have acquired numerous disabilities since MS first discovered me in 1972 and diagnosed in 1995. Since medical retirement in 2012 they rate of disability has snowballed.
Without a shadow of a doubt the invisible disabilities cause more distress and of those the one involving the bowel is the worst. How many people talk about crapping in their pants. It just did not happen to me until my rectal muscles started to became weak in 201 and now they they let me down every few weeks. Incidentally I have been using Peristeen for 2 1/2 years
There are many different reasons for felling depressed and suicidal but this problem with MS really wants me to end it all. Who wants to talk about these problems, how many people are there who can help. It is a personal problem but trying to get help is impossible. I have phoned up my local continence service but no one answers the phone and there is no message when the dialing tone stops. The sunshine in SE England help at the moment but will I survive next winter.
Hi Patrick. I sort of know what you mean. Constipation and bladder urgency including wetting my pants can be very wearing. Fortunately I’m not too bad at the moment but I can well imagine that if and when things get to the point where I’ve lost mobility, am stuck in bed , catherised and have to be helped to empty my bowels it could all get very tiring.
I’m sure that many people would be horrified at the idea but I do think it would be good if the NHS as a whole and those in the NHS who are involved in supporting people with MS facilitated some sort of open and frank discussion about life in later stages of MS - the massive problems, etc
Hi Patrick, years ago I registered with the UK MS Register which sends me questionnaires to complete every 6 Months about my MS and how it’s affecting me. They collect all the information as a means of providing data for research purposes. In return you have your own ‘page’ with records presented as a graph over time of e.g your level of depression, your level of anxiety along with physical ability in the form of an Expanded Disability Scale.
It is suggested that you might want to show your results and graphs to your MS team. I have yet to do that but it could be a very good way of opening up a discussion about your experience of anxiety and depression
Patrick, we are on the same timeline although I am much older. I completely understand you after I had a bowel emergency last May and surgery. Another issue is tremor and the inability to write. People have advised me to dictate, but it just doesn’t have the same flavor as writing or typing. And I so much miss doing physical work, like home repairs..
I'm with you on the dictation issue and not able to garden is a killer. I have a raised bed at wheelchair height, my saviour and some biggish pots as well
Patrick have you contacted the Peristeen helpline. I have Coloplast product and can speak to a Nurse. Our continence team are flakey too. Or get on to the Ms nurse to chase continence nurse
Having this disease is doubly tough when we have to constantly chase HCPs.
Unfortunately Coloplast will not and can not offer medical support when you have a real problem. They say they are not qualified. I was lucky that a friend of a friend could tell me what to do. My colon was blocked, could only insert 200 ml of water , 6 sachets of movicol each day for 3 days cleared the problem but no fun
As a psychotherapist of 15 years' experience, the last 4 of which have been as someone living with (what my consultant identifies as mild) MS, this post feels very resonant for me. When I was first diagnosed, I did think, "Well, at least I have the option of assisted suicide if/when it gets unbearable", which felt like an understandable response in the face of how my life changed in a moment. I recall with heartsink clarity how my then consultant reiterated my diagnosis (it had actually been shared in a letter, which I think is terrible practise) talking over my tears (it was the medical student who hurredly gave me a hard blue paper hand towel to soak up my tears), telling me that the diagnosis really isn't a big thing now and I will have a very different experience to the other three members of my family who had lived/died with MS. That's as may be (and so far he has been correct). Still, in that moment, I needed space to cry and receive empathy.
I have never been asked about suicidality, but then I have places where I can (and do) take these things (I am still in personal therapy). The difficulty I have is how HCP's might respond if/when someone shares they have suicidal ideation/plans. Sadly, the NHS just doesn't seem to have the capacity to respond helpfully or appropriately. The HCP's would need support themselves to manage what disclosures like that might bring up for them - do you think that is available, Gavin?
Yes, but in very few NHS centres that are properly resourced. Since I moved to Barts Health in 2006, we have been under financial pressure and have not been able to resource our MS practice with a psychologist. In addition, most neurologists and MS nurses are so overworked that they battle to do the basics. We are always fighting fires.
Saying that our hospital's breast cancer service does provide this kind of support. One of my patients who developed breast cancer and went through their service suggested we model ourselves on the breast cancer service. What she didn't know was that cancer services are massively subsidised by charitable donations (the pink-ribbon effect), and that all the bells and whistles she was seeing were not actually NHS-funded. The bottom line is that a star-rated service needs investment. I don't think this is an excuse for not trying.
I have always said that MS needs to be tackled like cancer. In the old days depending on the type of cancer, the take was “in five years you’re cured!”. Not so now, there is extensive life planning, particularly for breast cancer, including all of the issues we would like addressed as pw/MS! You are correct about the funding..
I agree. But cancer is an umbrella term for lots of different diseases, so the big charities like Cancer Research UK can pull in lots of funding. We need a similar charity for research into neurological conditions (MS, dementia, Parkinson's, FND, Epilepsy) instead of lots of little ones, Brain Research maybe? The trouble is those of us who live with it suffer with fatigue, brain fog, depression, and those of us who have family members that are pwMS are exhausted from caring duties so none of us has the energy to change things
You are so right about the fatigue. We here are urged to get involved with all manner of political and social action. I’ve heard people say (smugly) that anyone, no matter their physical state, can participate. We’re exhausted by taking showers and paying bills. And, sadly, reading complicated information is now difficult due to brain fog, at least for me.
I guess it’s the proverbial roll with the punches. I think that lots of us who were diagnosed long ago in the RRMS stage didn’t see this coming. I thought nothing would stop me from working. Then we got older, developed comorbidities, etc. My condition has become almost day to day, depending on the amount of sleep, etc. But I hear you with the wrong choices we make catching up with us, especially with increasing disability. (I kicked my spouse out!) We keep going, and I’ve made peace with when I’m down, I’m down. I can’t moan and groan about things, because that’s a dead end. (No pun intended.) But, no, “don’t worry be happy” doesn’t cut it. Hope you are doing well, Tom. I’m pretty chipper today and I’ll enjoy it! :)
Not just for you, Italien. On one hand, I see too much (in my opinion) "that's awful", when it might not be. I suppose it did (no, it definitely did) suck for me, but I did manage to have fun and a laugh or two. And that's true sometimes. On the other, it is devastating with the wrong course, wrong upbringing, wrong job, wrong partner, wrong false cure, etc. etc, all the wrong sh...t. I suspect some people don't anticipate the tidal wave coming when it is coming. Just be positive ain't gonna do it. When you try your best and you just keep getting clobbered over the head, what you gonna do?
Hi Gavin - really interesting article, thank you. I also wasn't aware of your spreadsheet until I read this - I intend to start using it but can't see the "Save to History" button - any suggestions?
Amy, this is a beta version. I have some feedback and will add new fields and optional PROMS. To avoid data protection issues, you can copy it as a Google sheet or download it as an Excel file and use it as a standalone file on your own computer or network. It is then up to you to print out a summary to send to your HCP before your consultation, or to take it with you on the day.
I am aware that this is a cop-out, but the governance, security, CE marking, etc. that come with medical apps are staggering and not something I want to get involved with at this stage. I also want to allow users (i.e., you) to hack or customise it to your needs. Most people know how to use Google Sheets or Excel.
I’ve discovered that the whole subject of suicide and of assisted dying is a mess when it comes to the legal, moral and medical profession. The medics object to legalising assisted dying, but, as in one of the posts here, might suggest not eating food is a painless way of committing suicide, but suicide is still not legal, and there seems to be confusion amongst GPs about what they should do if they know a patient is trying to commit suicide, the attitude and practices in Hospices in respect of suicide by not eating seems to vary and uncertain
I used to do interviews (as a psychologist) with employees of various orgs, carefully, to omit things that might give away their identity. Interviews were recorded. The comments were edited and issued in a feedback report to all employees and supervisors, but the words never changed. The power was in the verbatim descriptions of those actually experiencing their issue and making the comments. I got a sense of that here. In an overall summary of MS to the newcomer, I think it might influence accepting treatment, if you could get them to read it. But there is always a certain "level of IQ" that handles this kind of stuff better. Reading the comments, one cannot escape from concluding that "this is serious stuff".
You aren’t allowed to talk about this in the ms clinics. They specifically say it causes harm to their staff instead of providing help to the pwms. This is a topic they want washed under the carpet.
Suicide is the only cure (permanent cure) for the real MS. The failure of MS research to come up with a treatment to stop smouldering MS / unrelenting disability progression is a major factor behind suicide. EDSS 9.5 is “Totally helpless bed patient; unable to communicate effectively or eat/swallow”. Would you be happy to exist like that? Getting out early seems sensible planning - not a mental health issue.
I suspect a big contributor is the loss of participation. My friends are all into Padel. It’s all they talk about when I meet them. Most of them (as do most of my family) do parkrun. These appear minor losses, but really hit home when you think about them. MS is a disease of ever increasing losses.
MS at the end stage is dreadful. Up there with end stage Parkinson’s, MND, Alzheimer’s. A trip to Dignitas to avoid the end stage hell of these diseases should be available on the NHS (for those who can’t afford it). We all die, but I’d rather take a potion at Dignitas than die of pneumonia whilst bed bound in a hospice for neurological patients.
I don't think end stage MS as you describe is going to happen to most people with MS diagnosed in the last 5-10 years on high efficacy medication. I am in 2 minds about assisted dying. On the one hand like yourself I would not like to be subjected to ongoing torturous suffering without relief and have the option of assisted dying. On the other I am conflicted and would not like it legalised because in reality many people's lungs are filled with fluid by the assisted dying procedure and they suffer a excruciating sense of drowning for an extended period of time. So in reality apparently its not a potion that puts you gently to rest.
I agree the treatments now give potential for a less disabled life. If you’ve been diagnosed in past 5-10 years the chances are your MS has been there for some years before. So it’s down to symptoms being flagged and acted on promptly. There are still many being diagnosed later in life.
EDSS10 is death from MS. I would hope that the high efficacy treatments will give MSers more years of good life. MS does reduce average life expectancy by 7-12 years. Alan Osmond (Osmond family) died this week age 76 and had MS for nearly 40 years. It’s all about the line you draw in the sand. I just couldn’t deal with an electric wheelchair, a hoist in the bedroom / bathroom, or carers feeding me / washing me. Each to his / her own. If you’ve been an active person etc. MS is not a good fit.
Agree..
In the UK, suicide is legal. You can no longer be imprisoned fot attempting suicide but failing. My mental health issues predate my ms diagnosis. I object to the attitude that "the mental health issue is just a smokescreen - another excuse to dish out a pill. I take significant doses of those pills and they work. If it was a placebo effect I wouldn't have relapsed into depression and anxiety when the GP switched me to the same dose of slow release medication and recovered again 6 weeks after he switched it back to normal release.
Suicide is the only “cure” for the majority of illnesses including asthma, eczema, heyfever, osteoporosis and Varicella Zoster infection (chicken pox and Shingles virus).
I don’t believe any of the above illnesses are in the same league as MS which killed Jacqueline du Pre in her early 40s, J K Rowling’s mother in her mid 40s…. My aunt died in her early 50s from her MS and her father died a year later as he was so traumatised by seeing his daughter suffer so much. It’s the cruelty of MS that stands out - fathers unable to walk their daughter down the aisle, careers ended, no proper retirement, divorces, loss of independence…
You’re right that these conditions aren’t in the same league as MS, but they are incurable. If you have an EDSS of 9.5, you have the right to refuse a feeding tube and will die in around 2 weeks. Dying through starvation isn’t painful and I’ve seen several people with malignant disease choose this. People with anexoria do it all the time. No legal ammendment will change this. You can stop eating and drinking with EDSS of 0 if you really want.
Having seen end stage MS up close, I completely agree with this comment. Some things are worse than death.
Thank you for this. I think that I tend to share Ian’s thoughts except for me suicide would not be a mental health issue so much as a more factual and straightforward even logical decision. A few years back my father died at a few weeks before his 95 birthday. At that age he was struggling physically and medically with UTIs etc - lots of things that just made day to day to day life difficult. For his last months he was in a care home and I remember the last time I. saw him he said that he had had enough now . He then died a few weeks later.
I’m totally sure that I might well get to the same point. If life is just a hard daily struggle with absolutely no prospect of anything getting better and all enjoyment has gone is there any rational reason for wanting to continue ?
(I’ve known a few people who killed themselves and in each case it was because of circumstances that weren’t ’permanent’ and could have been fixed I.e emotional, mental health issues which once ‘fixed’ would have left the person living an active, happy fulfilling life.
(I really don’t understand the objections to assisted dying and think that some people are so horrified by the idea that all rational and humane thinking about it becomes impossible).
So in summary and for me suicide/ assisted dying would not be a mental health issue- absolutely not! Overall I have had a good life, I continue to do well in tackling MS and all that it brings and I am enjoying life. But, if it gets to the point where life is just a hard daily physical, mental and emotional struggle with nothing to enjoy then why continue with the torture. Just take a peaceful, relaxing and reflective last few weeks before reaching out to whatever is next ( probably nothing but who knows)
I agree. The mental health issue is just a smokescreen - another excuse to dish out a pill. For me it’s about quality of life eg strolls in the park, a game of tennis, a trip to a London theatre.. When MS robs you of all these little joys and you become reliant on others to help with the most basic things (washing / eating etc.) I will know that it’s time to meet my maker. I’ve sat in enough waiting rooms surrounded by MSers slumped in wheelchairs with severe tremors to know where my red line is.
Amen..
I'm glad you're adding this especially as it does get over looked I'm also very aware that sometimes it is used as a excuse not to look into situations further where the ms is causing other mental issues such as dementia, personality disorder, etc we really need a follow through of care to put information together. Such as this patient has lesions (active especially although I do understand inactive ones have left brain damage aswell) in certain areas which coincide with the behaviour being demonstrated. As I run a carers group mainly on WhatsApp as the caring for someone with ms is very demanding, I have noticed a big similarity between us all we are dealing with issues all relating to mental health illnesses, most say the same line " they are a different person to who I married " most lack empathy, care, (which is understandable living with such a disease) but its more, making up lies, anger outbursts, complete personality flips and back again. Delusions, which they believe are right with no compromise. Sometimes physical abuse along side these issues. I'm only a carer and wife but I honestly believe MS actually progresses into dementia leading to all these issues under the dementia umbrella. It took 17 years till I was taken seriously and I wouldn't listen to its brain fog its depression ( oh at one point they put my husband on antidepressants at which point he became suicidal and had to come off them) another thing I think needs looking at is how these meds effect a person with brain damage and active lesions because honestly I've seen pwms and they react differently to meds than the general public that the drugs have been tested on.
Sorry for the waffle but I'm very passionate about this and I'm seeing it so often I'm not surprised that the divorce rate with pwms is so high as its not acknowledged and explained from the beginning that this is going to happen.
Thankyou for your hard work.
You are not 'only' a carer. Not a helpful reply, but be kind to yourself. I've always maintained that carers have a tougher job than those of us with MS - we KNOW how we feel, you can only guess. And we don't always make it easy for you.
Thankyou and I hope today is a good day for you 🙏
Quick answer no, I've never been asked! But I do think (if your 20% figure is anywhere near correct) it should be. Of course, over the 24 years since my diagnosis, I might have been asked how I was feeling indirectly, but because I've never raised any red flags in my answers there have been no follow ups. I would be happy to be asked if I have any suicidal thoughts - but that's probably because I don't. I also think that neurologists (or MS Nurses) are not necessarily the best 'experts' - they aren't psychiatrists or psychotherapists who deal with SIs all the time and can identify less obvious answers then 'yes, I feel life isn't worth living and no one will miss me if I'm gone'.
It's a tricky one, but questions that definitely should be asked.
The 20% figure comes from a meta-analysis of studies and it likely to be representative. It is not my figure.
I think this issue needs to be addressed, so thank you. I am up in years, losing more and more function and beginning to have daunting relapses. I have my affairs in order. Here in the states, btw, I would never answer any questions re depression, due to insurance issues. I have no options for DMDs, due to low blood count issues, or so I am told. High dose cyclophosphamide with other chemo agents worked for cancer and put MS in long remission in early 90s, but those high doses can affect blood, and I also have a genetic red blood disorder. This leaves “symptom management” via pharma. Fun city. I have always been adamant that the natural sadness that accompanies degradation of quality of life and lack of inability to participate with normies should not be conflated with depression. I have an inherent upbeat funny personality, which is what people see and hear and most of all, remember. But the loss of socialization over the years has been insidious. Can’t keep up, you’re politely left behind. Also, the ableism, at least here, is insane. Everyone can use a computer! Everyone drives! Well, I don’t now. I am moving to a larger geographic area where there are family and friends and perhaps it will help. I don’t drive, but I still have a little hybrid. I told one of my adult kids that when there’s no quality of life left, I’ll rent a gas car, go in the garage with everything I want to eat and drink and arrivederci! (Unfortunately, the kid was horrified.) That’s the funny, though, that covers sadness. Seriously, we should be given a choice that when enough is enough, we ourselves get to choose. (Terrific comments on this, btw..)
Hi Italien. :-)
Hey Tom, how’s it going?
My level of depression hasn't changed since the MS diagnosis. I just told the neurologist that, and that I have a therapist. I refuse to talk about it, will not take screening quizzes, etc. My experience is that clinicians who haven't been trained for this do far more harm than good.
We all have a right to commit suicide with no law changes. In the UK we don’t have the right to expect somebody else to become involved in that action. In a growing number of countries, people are losing the right to expect life improving interventions in favour of assisted suicide. The House of Lords is protecting us by obstructing this. If the assisted dying law is enacted, neurology departments will be run down, financing of research to find an MS cure will vanish and we’ll have choice taken away from us. This is the unintended consequence of a vocal minority demanding legal reform. Why would a busy doctor treat your depression when they can refer you to a service that ensures you (the high demand patient) never needs any more of their time. One of the safeguards which I would add, is a requirement that every depression intervention possible is tried before eligibility for assisted suicide is granted. This includes access to a Psychedelic Assisted Therapy (PAT) service. Unfortunately the same House of Commons which thinks we should be exterminated, thinks psychedelics are “too dangerous” and “without medical benefit”. This is simply untrue. Psychedelics (which variably include Psilocybin, LSD, DMT and Ecstasy) are available in Holland, some parts of the US and Australia. King Charles III has been put in the unenviable position of either breaking his coronation oath to uphold “thou shalt not kill” or risk a constitutional crisis by refusing to grant “Royal ascent” to the Jersey and Isle of Man laws where there is no House of Lords to protect us from the politicians.
Sorry but I do think that is a rather alarmist and extreme position to take and I’m not sure of the latest but it’s a majority of the population that are in favour of assisted dying. For me I can well anticipate getting to the point where the impact of MS leaves me very much of the view that I see no point in continuing to live just to wait for the next bout of pneumonia and more time in hospital
I don’t know about the UK position on this. What happens in the states is if you have terminal cancer, the whole medical industrial complex swings into action to keep you alive, no matter how close to death you are. However, that complex generally shuns lingering chronic illness such as MS. Other than DMDs, there is no big money to be made. Cynical? I am a bit.
Not to mention that the "palliative" chemo treatments they offer are usually worse than simply dying from the cancer. One of my oldest friends, my college roommate, recently died from pancreatic cancer. She was dx'd in August and gone by December. She was given (from what she told me) a happy path for her treatment, with a timeline of anything from one year to four. As if, with advanced pancreatic cancer. Not sure she actually believed that, she was no fool, but she did try the chemo for several rounds, and said it was the worst thing she'd ever experienced, and this from a woman with the highest pain tolerance of any person I've ever known. So yes, they offer you more life, technically, but often at an extremely high cost, with the highest cost being to the quality of the patient's remaining time. Anyway, she quit the chemo, and with the help of excellent pain meds (at least the medical establishment did not fail her in this) and hospice, she was eased out peacefully.
And I'm every bit as cynical as you, as you probably know. Way too much experience with the systems here. When I was still seeing a shrink-type person (a social worker, NOT a psychiatrist because I'd rather be thrown off a cliff that submit myself to that particular specialty) after a while she piped up with "I'm thinking you have some medical trauma", an assessment which had never occurred to me, but upon reflection, would have to agree with.
Yes, it is very alarming and delibrately killing pwMS is extreme. Here in Jersey we were promised there would be no mission creep, yet within weeks of the original proposal’s adoption a politician tried to expand it to the extent of MAiD (https://statesassembly.je/vote-detail?id=22624). Fortunately, the states assembly were more intelligent than that. You contend that the majority of the population support assisted suicide and this is born out in surveys, but there has been no referendum to support such a view. There is ample peer reviewed, published evidence that when you become more disabled, your tolerance of disability expands. How would you feel if your GP and/or neurologist started every consultation with a question about deliberately ending your life and whether you can really be bothered with (expensive) active treatment? When I was 19, I remember learning that cyclophosphamide helped MS and thinking that if I had MS I would risk it. 3 decades on, even with an EDSS of 7.0 I wouldn’t risk that. If you have MS and can’t bear the thought of becoming disabled, you can legally take your own life right now, with no retribution, law change or criminality. Liz Carr makes an excellent argument for not threatening the disabled (https://www.bbc.co.uk/programmes/m001z8wc). We recently witnessed the defeat of the McArthur Bill in Scotland, while at Westminster, the fall of the Leadbetter Bill is imminent. That is unlikely if the “majority of the population are (genuinely) in favour of assisted dying.”
I think that those in favour of assisted dying and those who oppose it will never agree. Fortunately for me I have the money to take me to other countries that, to me, have a more humane and enlightened position on assisted dying and would allow me to die at a time of my choosing with loved ones around me
Mark,
As a GP you would have taken the oath with regard to “do no harm”. I haven’t taken such an oath. I alone will decide when the quality of my life is so poor that I want to end it. At this point I can go to Switzerland, not eat etc. I had one disease in this life (MS) and the specialism which covers it let me down. I know my future (thanks to the EDSS and a family member + a family friend who had this grim disease). I would hope that when I want to end it there would be a system in place where I could go somewhere local and take a pill / injection - rather than go to Switzerland or do something messy at home. No one is forcing anyone to do anything, but those who want to call it a day (not unreasonable given what neurodegenerative diseases such as MS can do) should be supported. We need to stop focusing on quantity (keeping someone alive even if they are in a horrendous situation) and focus on quality (helping an individual who has had enough pain / suffering / loss to end it).
Hi Ian, just to say I agree fully with you. Suicide, assisted suicide is a very sad complex issue but one that , to me , becomes a lot clearer and simpler when faced with the simple choice of ‘do I want to spend my last years totally bed bound , incontinent, unable to feed myself, , experiencing repeated episodes of aspirational pneumonia ( I think that what’s it called) and knowing every day is going to be another day of the same until I die from the next episode’ or do I want to end my pointless suffering now ?
It is all very sad . The scenario above is the one my aunt experienced in her last few years in a nursing home. The really sad thing is that for reasons we will never know for sure , her husband took his own life not long after my aunt went to the nursing home for what was supposed to be a temporary period to give him a break from caring for her at home . I guess he just felt that he couldn’t cope any more. All very tragic
I’m sorry about your roommate. Yes, they try to give as much chemotherapy as they can even though it’s over, and if you’ve ever had high dose chemotherapy (or any chemotherapy), you eventually just want to make the side effects to stop. Medical trauma! That’s such an excellent way to put it.
My brother took his own life after 18 years with MS. He struggled with the diagnosis being a fit and healthy 26 year’s old.
It is a sad reality of MS and many other conditions. There should be help with mental health from the start and treated as importantly as physical health.
I am so sorry for your loss.
Definition of a Man
I really disagree. Regardless of gender, age, or health condition, more needs to be done to address Mental Health. Especially for males between 25 and 45. Xx
I agree. But if you have a moment or a way, get on the "Men with Multiple Sclerosis" Facebook site and look around at what is important.
Would be fair ppl with this dx have the right to end life with suicide...Ms is awful. Awful.
https://gavingiovannoni.substack.com/p/planning-for-death
https://gavingiovannoni.substack.com/p/the-terminal-stage-of-ms-and-living
I do not think of myself as a suicidal type of person, lots of people think I am cheerful and with a positive outlook on life. Recently suicidal thoughts have crossed my mind especially in the winter, my MS is always significantly worse when its colder. I have acquired numerous disabilities since MS first discovered me in 1972 and diagnosed in 1995. Since medical retirement in 2012 they rate of disability has snowballed.
Without a shadow of a doubt the invisible disabilities cause more distress and of those the one involving the bowel is the worst. How many people talk about crapping in their pants. It just did not happen to me until my rectal muscles started to became weak in 201 and now they they let me down every few weeks. Incidentally I have been using Peristeen for 2 1/2 years
There are many different reasons for felling depressed and suicidal but this problem with MS really wants me to end it all. Who wants to talk about these problems, how many people are there who can help. It is a personal problem but trying to get help is impossible. I have phoned up my local continence service but no one answers the phone and there is no message when the dialing tone stops. The sunshine in SE England help at the moment but will I survive next winter.
Hi Patrick. I sort of know what you mean. Constipation and bladder urgency including wetting my pants can be very wearing. Fortunately I’m not too bad at the moment but I can well imagine that if and when things get to the point where I’ve lost mobility, am stuck in bed , catherised and have to be helped to empty my bowels it could all get very tiring.
I’m sure that many people would be horrified at the idea but I do think it would be good if the NHS as a whole and those in the NHS who are involved in supporting people with MS facilitated some sort of open and frank discussion about life in later stages of MS - the massive problems, etc
The problems occur in real conversational no-go areas. we need HCPs to open these conversations and be more aware of the MS lived experience.
Hi Patrick, years ago I registered with the UK MS Register which sends me questionnaires to complete every 6 Months about my MS and how it’s affecting me. They collect all the information as a means of providing data for research purposes. In return you have your own ‘page’ with records presented as a graph over time of e.g your level of depression, your level of anxiety along with physical ability in the form of an Expanded Disability Scale.
It is suggested that you might want to show your results and graphs to your MS team. I have yet to do that but it could be a very good way of opening up a discussion about your experience of anxiety and depression
Patrick, we are on the same timeline although I am much older. I completely understand you after I had a bowel emergency last May and surgery. Another issue is tremor and the inability to write. People have advised me to dictate, but it just doesn’t have the same flavor as writing or typing. And I so much miss doing physical work, like home repairs..
I'm with you on the dictation issue and not able to garden is a killer. I have a raised bed at wheelchair height, my saviour and some biggish pots as well
Patrick have you contacted the Peristeen helpline. I have Coloplast product and can speak to a Nurse. Our continence team are flakey too. Or get on to the Ms nurse to chase continence nurse
Having this disease is doubly tough when we have to constantly chase HCPs.
Unfortunately Coloplast will not and can not offer medical support when you have a real problem. They say they are not qualified. I was lucky that a friend of a friend could tell me what to do. My colon was blocked, could only insert 200 ml of water , 6 sachets of movicol each day for 3 days cleared the problem but no fun
🤷♀️ so frustrating
As a psychotherapist of 15 years' experience, the last 4 of which have been as someone living with (what my consultant identifies as mild) MS, this post feels very resonant for me. When I was first diagnosed, I did think, "Well, at least I have the option of assisted suicide if/when it gets unbearable", which felt like an understandable response in the face of how my life changed in a moment. I recall with heartsink clarity how my then consultant reiterated my diagnosis (it had actually been shared in a letter, which I think is terrible practise) talking over my tears (it was the medical student who hurredly gave me a hard blue paper hand towel to soak up my tears), telling me that the diagnosis really isn't a big thing now and I will have a very different experience to the other three members of my family who had lived/died with MS. That's as may be (and so far he has been correct). Still, in that moment, I needed space to cry and receive empathy.
I have never been asked about suicidality, but then I have places where I can (and do) take these things (I am still in personal therapy). The difficulty I have is how HCP's might respond if/when someone shares they have suicidal ideation/plans. Sadly, the NHS just doesn't seem to have the capacity to respond helpfully or appropriately. The HCP's would need support themselves to manage what disclosures like that might bring up for them - do you think that is available, Gavin?
Do I think this is available?
Yes, but in very few NHS centres that are properly resourced. Since I moved to Barts Health in 2006, we have been under financial pressure and have not been able to resource our MS practice with a psychologist. In addition, most neurologists and MS nurses are so overworked that they battle to do the basics. We are always fighting fires.
Saying that our hospital's breast cancer service does provide this kind of support. One of my patients who developed breast cancer and went through their service suggested we model ourselves on the breast cancer service. What she didn't know was that cancer services are massively subsidised by charitable donations (the pink-ribbon effect), and that all the bells and whistles she was seeing were not actually NHS-funded. The bottom line is that a star-rated service needs investment. I don't think this is an excuse for not trying.
I have always said that MS needs to be tackled like cancer. In the old days depending on the type of cancer, the take was “in five years you’re cured!”. Not so now, there is extensive life planning, particularly for breast cancer, including all of the issues we would like addressed as pw/MS! You are correct about the funding..
I agree. But cancer is an umbrella term for lots of different diseases, so the big charities like Cancer Research UK can pull in lots of funding. We need a similar charity for research into neurological conditions (MS, dementia, Parkinson's, FND, Epilepsy) instead of lots of little ones, Brain Research maybe? The trouble is those of us who live with it suffer with fatigue, brain fog, depression, and those of us who have family members that are pwMS are exhausted from caring duties so none of us has the energy to change things
You are so right about the fatigue. We here are urged to get involved with all manner of political and social action. I’ve heard people say (smugly) that anyone, no matter their physical state, can participate. We’re exhausted by taking showers and paying bills. And, sadly, reading complicated information is now difficult due to brain fog, at least for me.
Thanks for replying Gavin. I know it's not easy by any stretch of the imagination!
I guess it’s the proverbial roll with the punches. I think that lots of us who were diagnosed long ago in the RRMS stage didn’t see this coming. I thought nothing would stop me from working. Then we got older, developed comorbidities, etc. My condition has become almost day to day, depending on the amount of sleep, etc. But I hear you with the wrong choices we make catching up with us, especially with increasing disability. (I kicked my spouse out!) We keep going, and I’ve made peace with when I’m down, I’m down. I can’t moan and groan about things, because that’s a dead end. (No pun intended.) But, no, “don’t worry be happy” doesn’t cut it. Hope you are doing well, Tom. I’m pretty chipper today and I’ll enjoy it! :)
I have been going to private therapy. It’s invaluable, as you must know.
Not just for you, Italien. On one hand, I see too much (in my opinion) "that's awful", when it might not be. I suppose it did (no, it definitely did) suck for me, but I did manage to have fun and a laugh or two. And that's true sometimes. On the other, it is devastating with the wrong course, wrong upbringing, wrong job, wrong partner, wrong false cure, etc. etc, all the wrong sh...t. I suspect some people don't anticipate the tidal wave coming when it is coming. Just be positive ain't gonna do it. When you try your best and you just keep getting clobbered over the head, what you gonna do?
Hi Gavin - really interesting article, thank you. I also wasn't aware of your spreadsheet until I read this - I intend to start using it but can't see the "Save to History" button - any suggestions?
Amy, this is a beta version. I have some feedback and will add new fields and optional PROMS. To avoid data protection issues, you can copy it as a Google sheet or download it as an Excel file and use it as a standalone file on your own computer or network. It is then up to you to print out a summary to send to your HCP before your consultation, or to take it with you on the day.
I am aware that this is a cop-out, but the governance, security, CE marking, etc. that come with medical apps are staggering and not something I want to get involved with at this stage. I also want to allow users (i.e., you) to hack or customise it to your needs. Most people know how to use Google Sheets or Excel.
Does this make sense?
This is an important thing to acknowledge, but just another reason why one must "hit it hard and early".
That will help depression in two ways: reduced disability, and it should keep the biological disease that causes depression in check.
Better to treat proactively and prevent depression and disabiity than undertreat and then figure out how to treat disability and depression later.
I believe better disease management and outcomes will significanly reduce SI risk as well.
I’ve discovered that the whole subject of suicide and of assisted dying is a mess when it comes to the legal, moral and medical profession. The medics object to legalising assisted dying, but, as in one of the posts here, might suggest not eating food is a painless way of committing suicide, but suicide is still not legal, and there seems to be confusion amongst GPs about what they should do if they know a patient is trying to commit suicide, the attitude and practices in Hospices in respect of suicide by not eating seems to vary and uncertain
Dr. G', might be another book here in the comments.
You are right. I might download all the comments and summarise them first to see if anything can be done with them.
I used to do interviews (as a psychologist) with employees of various orgs, carefully, to omit things that might give away their identity. Interviews were recorded. The comments were edited and issued in a feedback report to all employees and supervisors, but the words never changed. The power was in the verbatim descriptions of those actually experiencing their issue and making the comments. I got a sense of that here. In an overall summary of MS to the newcomer, I think it might influence accepting treatment, if you could get them to read it. But there is always a certain "level of IQ" that handles this kind of stuff better. Reading the comments, one cannot escape from concluding that "this is serious stuff".
You aren’t allowed to talk about this in the ms clinics. They specifically say it causes harm to their staff instead of providing help to the pwms. This is a topic they want washed under the carpet.
Really? I’m not questioning you but shocked.
I know where I go it can be raised.
I was a counsellor for a while. I worked with MSers. As well as general others with other losses. Suicide ideation often came up with MSers
In the end I stopped counselling. I was concerned about the level of transference. Both ways. I certainly have SI. I deal with it alone.