44 Comments
Nov 1Liked by Gavin Giovannoni

Yes yes yes. I think self-management is not just feasible but is already a necessity considering NHS resource. I would love to see a self-management suite of apps or similar.

I attended an Expert Patients Programme in Manchester and it was one of the best things I’ve been part of in terms of helping me to self manage. Since MS is so changeable, however, this is the kind of thing I can see myself benefiting from attending once every few years.

None of the other patients who attended the EPP had MS but all of us shared similar concerns as a result of our health conditions (primarily around fatigue and pain) which meant there was a huge bank of resource to draw on simply by being in the same room together once a week for 8 week: the impact of that is also not to be underestimated.

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Nov 1Liked by Gavin Giovannoni

Agreed. Great course. Mine was led by an MSer. Also many other conditions. That’s good, as you become aware of so many other illnesses you didn’t know about. It builds empathy too.

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Nov 1Liked by Gavin Giovannoni

Your comment makes me think of continuing education requirements for professional licensing. Like doctors, lawyers, veterinarians, etc. Obviously, a requirement is the opposite of agency, but an Expert Panel with annual updates would be so interesting!

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Yes -absolutely agree with all of this. I’ve just moved and transitioning healthcare between one trust and another has been very difficult. It’s needed tenacity, lateral thinking and not taking no for an answer - it is not for everyone. I’ve bypassed the GPs completely and acted as liaison between the MS nurses in each trust - effectively I’ve done a self referral. They have all been excellent but the system is unnecessarily bureaucratic - not helped by the fact that the IT systems don’t ‘talk’ to each other. It’s also been exhausting which having fatigue in the first place is not ideal. Im tenacious by nature but anyone who relied on notes to be transferred and a new GP referral to take place would be waiting a very long time…

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Nov 1Liked by Gavin Giovannoni

I imagine given the fear/disdain/cynicism of self-diagnosis I have seen from HCP (on any healthcare front) there's a bigger issue to overcome before any of these ideas are considered much less put into play.

All sounds good to me as a well-educated, inquisitive, privileged pwMS. I'm not sure I should be the target audience for this kind of intervention however.

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Nov 1Liked by Gavin Giovannoni

This is talking real sense. First of all I live in Spain. While I have a neurologist in the nearest hospital I can call on, I have found the whole business so distressing that I may become more unwell through stress. ( I was on a 5 year study with the hospital which meant frequent mris in many hospitals more than 100 kms from home.)

So unless it's a broken limb ( of which I have had quite a few) I try to research and deal with the symptom. Lifestyle changes were the crux ie diet, vit D, never stopping walking albeit very slowly. My gps of which I have had many no use at all.

A self help app not too technical would be wonderful. Also one geared to "carers"?

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Nov 3·edited Nov 3Liked by Gavin Giovannoni

Many with MS cannot look after themselves and are not as able to look at all options. Most here do not have a Neuro on their doorstep and who is easily accessible how can I self manage my symptoms that for last 3 nights have meant Ii have had to lay down on floor for 30 mins before I could tackle getting into bed?

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Nov 2Liked by Gavin Giovannoni

Self-agency is possible but some pwMS need some encouragement. Deep depression, lack of self esteem etc has held my partner with MS from having self agency to work on lifestyle factors. I propose access to coaching professionals within the MS team who can encourage those who need it along. Whenever we have come across the odd HCP that goes the extra mile, offers a human approach to his situation I see him motivated by it to work on himself, but then he gives up. You are right to identify there are two groups of patients; those who naturally research and advocate for themselves ( for which resources such of this are highly effective) and the others that go hide in a darkened room and neglect thenselves. They are very hidden because they are not on places like this telling their story. Those are the ones that need targetting with some support; that means someone to build a relationship with, set goals, keep checking in with them. As his partner I have tried to play this role but sometimes I think it needs someone external to the houeshold. It is also hard to do whilst holding down full time employment. How do you reach those MSers that are hidden? Via their partners/carers who are out there, like me researching for solutions. Someone else mentioned an App for the carers too -good idea.

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Nov 2Liked by Gavin Giovannoni

In this case presumably treating the depression would be first priority... It's not something doctors can solve for you either (unless you are lucky and one of the anti depressants works really well for you) but most definitely can't solve it alone.

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Nov 1Liked by Gavin Giovannoni

Since dx over 3 years ago I’ve felt quite sidelined by my MS team.

Recently my MS nurse team put on a patient event to educate and discuss embarrassing symptoms and how to treat them. It was an excellent day which I was pleased to learn this will be followed with a similar event soon on mostly cognitive symptoms.

As informative as this was, it possibly isn’t feasible for them to do every year. A lot of time out of busy schedules and masses of planning etc. that being said this f2f event had more benefit for me than reading texts online.

Sitting in a room listening to patient experiences and understanding the support locally available to me is something I can’t get from an app or charity.

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💯 everything we know about my husbands symptoms, meds, cognition, dementia, is all self taught unfortunately unless the neurologist can give a pill he doesn't want to know or explain anything and on several occasions actually became quite offish when I've gone in with studies ref to husbands different symptoms and just fobbed us off. If it wasn't for me(and hubby says this) hubby wouldn't really know anything about his ms because of his background cognition etc etc

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Nov 1Liked by Gavin Giovannoni

I think this is common, unfortunately. 😭 Your husband is lucky to have you. 🤗

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Nov 1Liked by Gavin Giovannoni

Excellent article but as stated I think you're preaching to the converted, with subscribers being responsible as much as possible.

I'm also interested in your opinion on a"positive" mindset for contributing to slower disease progression. I've been dx'd 12 yes from age of 50. Currently on Ocrevus since 2019. Whilst I have poor mobility I'm generally very pleased with my disease progression compared with some of my peers. On dx I said "I'd rather be in a wheelchair than unable to hold a conversation", now I say looks like I'll get my wish. Bad taste possibly.

I recently heard a podcast where an immunologist spoke of the emotional side of the immune system and it made me wonder how much difference mindset makes- obviously with positivity you're probably a happier person.

Anyway thanks for all your efforts, happy to discuss this further if it's of interest

Regards

Adam

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Nov 1Liked by Gavin Giovannoni

Some of the barriers that I have faced, even as a well-educated, privileged patient have been systemic issues in the healthcare system (particularly here in the US). Things like getting insurance to pay for the cost of meds.

But I think a more global issue is the power dynamic that insists we (especially women) are not allowed to say “no” to a doctor. It’s going to take more than some pamphlets to make it safe for patients to have a legitimate dialogue with their HCP. One in which there is a back and forth of expertise about the science and about the lived experience.

Add to that my many years of denial, which again, is sociological. Why would I advocate for my medical needs if I don’t believe they exist, and I have other HCP who know nothing about MS and are willing to help me diagnose amy concerns as something else?

But then I look at a friend of mine, who has said for years that her mom “died of MS,” when it would be more accurate to say her mom was a pwMS who died of being a poor, black woman in Louisiana.

So although I would love some tools, and I would love opportunities for educating both pwMS and HCP, I kind of feel like it’s spitting in the wind.

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Nov 1Liked by Gavin Giovannoni

I’m going to assume my son’s neurologist has adopted this strategy as having had one appt when he was transitioned from Neuro paeds to the adults team at 16, they (nor any other doctor) have ever seen him since - almost four years later. So thank god for self help really.

But yes it’s a great idea having correct, HCP checked, accessible info available for prevention and recognition of MS related issues. But I would caveat that if this replaces F2F or even remote regular appointments then I think some of the savings should be channelled into ensuring if the pwMS does then need actual specialist support this is more available. Many pwMS recognise the answerphone of their MS teams and the usual lack of reply.

And sometimes, feeling someone actual cares about you as an individual, asks you genuinely how you are and manages as a minimum some empathy is hugely therapeutic on its own. Shame the NHS can’t really manage that.

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Nov 2Liked by Gavin Giovannoni

Are there patients with MS that don’t try to manage their MS??????

I to try to manage my MS almost 24/7………..

The problem is that most doctors don’t know how to help you manage MS, usually they don’t even have a clue. They look at you in despair.

Yes, of course it would be nice if we get more support managing MS. We need to know how to manage our MS. Diet is not on your list but I do think diet is important. The list of food I can’t eat is, for instant, growing. etc etc

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author

Re: "Are there patients with MS that don’t try to manage their MS?"

Yes, sadly too many. It is often due to denial, but there are many other reasons for them not coping.

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Nov 1Liked by Gavin Giovannoni

If healthcare professionals want to be able to expect their patients with MS to have self-agency and manage their own MS-related symptoms, they need to stop disdaining, refusing to treat, or even harming patients that try. I have no idea how common that is, but it happens often enough that I think everyone diagnosed with MS gets a warning to just... be careful.

My neuro is very good. I have had other healthcare professionals that reacted extremely poorly to pushback. One is refusing to confirm my treatment and bills to the health insurance company (this is the US), so I can't get any insurance coverage.

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Nov 1Liked by Gavin Giovannoni

I would love access to this kind of information, myself. I just have concerns about "expecting" patients to do things that result in their being treated badly.

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Nov 1Liked by Gavin Giovannoni

This is a big point- neuro’s don’t seem to like if we try things to help ourselves that they don’t explicitly tell us to do.

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Nov 1Liked by Gavin Giovannoni

Yes pwMS need to see ourselves as agents managing MS and not just recipients of care. There are too many things that can crop up with MS to leave everything to healthcare providers. I developed temperature disregulation this year (overheating) and I dealt with it effectively on my own.

With depression, I asked my MS specialist if there are special depression treatments for pwMS (given that MS can cause structural changes in the brain that cause depression) and she said no, I should see my psychiatrist for depression. I am currently studying muscle weakness — I know I need to stay active, but should I get baseline data on my strength? Are there particular exercises I should do to keep my legs strong? I would be all over a module by Dr. G about this!

Same for your examples — UTI, fecal impaction — I want to know how to manage.

Such educational materials could be a boon to pwMS who don’t have the wherewithal to plumb the depths of Google Scholar.

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founding

Thank you. Yes, this is helpful, reassuring.

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If there is a Healthwise course at your local leisure centre or an exercise referral equivalent, someone there can assess you and provide safe and appropriate exercise.

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Nov 1Liked by Gavin Giovannoni

About 15 years ago I took part in the following. https://www.nelft.nhs.uk/epp/ It’s the Expert patient course. For people with different conditions. I think an OT suggested it. I’m surprised you are not aware of it Pro G. It was run by volunteers who’d done the course and further training. I think it might be another PC lottery. I found it so empowering. I always try to work it out for myself. Sometimes to my detriment by tolerating too much before I ask for help. Partly due to resilience partly mistrust and white coat syndrome. Stems back decades. Not to do with MS.

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Yes, this is an example of one of the courses I was speaking about. Many NHS services have closed these down to save money. These used to be mandatory, or least an offer of the course mandatory.

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Nov 2Liked by Gavin Giovannoni

Self-agency is definitely possible, and is something I’ve been used since my diagnosis in 2007. I believe being proactive is essential to living your best life with MS, but also acknowledge that for some people this is difficult, so having something in place that is easily accessible for all is a must.

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Nov 1·edited Nov 1Liked by Gavin Giovannoni

To some degree (lifestyle topics like diet, exercise, sleep, ...) for sure. Frankly, PwMS with manageable EDSS who don't do so probably can't really be helped all that effectively.

I could do more if could write prescriptions to myself :-) I might even pay for those out of pocket. At least my basic prescriptions are more or less auto renewed but there are a few things I sure would like to try. OTOH, every now and then my neuro does pull a (small) rabbit for symptomatic management out of the hat...

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Nov 1Liked by Gavin Giovannoni

Personalised care is part of the NHS long term plan but it is far from embedded and is geography-dependent as to what level of service you can expect. I think there are a number of reasons why people with MS prefer not to self-manage eg. fear of the future, fear of other MSers, complacency with the NHS, lack of knowledge, etc. The MS nurses and neurologists can’t do it all but as a nation a lot of us think the NHS is there to help us when we are ill. End of. I’m fortunate to be in a very forward thinking PCN and I think 1-1 social prescribing can help tackle some of the issues pwMS face as they have more time to find out what matters to them, IF the pwMS are open to it. Quite often if there is further trauma in someone’s history this can impede self management. Complex stuff.

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