ClinicSpeak: what matters to you?

Are you happy with the way you are treated? Have your say! #ClinicSpeak #MSBlog #HaveYourSay

“I typically read the BMJ on my way to work on a Monday morning and the NEJM on a Thursday morning. Hence my frequent posts from the BMJ and NEJM on a Monday and a Thursday, respectively. I am no different to most and would be the first to admit that I am a slave to habit. However, this week’s BMJ has several juicy articles on Pharma behaving badly so I had to read them last night (more on that later in the week) and as the BMJ was next to my bed when I woke this morning I had to finish it.”

“There is enough material in this issue of the BMJ for a week’s worth of posts. However the article that caught my eye is one on ‘what matters to you’ as a patient in a healthcare system. I am very interested in exploring this issue further, particularly as it has relevance to our #ThinkHand campaign; so please feel free to comment. Please note positive comments are as valuable as negative comments. I am personally at a cross-roads when it comes to the way I feel about our healthcare and social care systems and how they address the needs for pwMS and their families. I think the current system, which is largely Victorian in design, is out-dated and out-moded, which is why we are trying to start the discussion about re-configuring our MS services it. So don’t hold back be as brazen and critical as you want; as Mouse Doctors says I have developed a very thick skin.”

Sosena Kebede. Ask patients “What matters to you?” rather than “What’s the matter?” BMJ 2016;354:i4045.


…. Maureen Bisognano, one of the keynote speakers at this year’s International Forum on Quality and Safety in Healthcare in Gothenburg, Sweden, told delegates that we should ask our patients, “What matters to you?” rather than, “What is the matter?”….

….. The question “What matters to you?” tries to get to the essence of patient centered care, which the Institute of Medicine has listed as one of the priorities for quality improvement…..

…. The emphasis on diagnostic skill sets alone, however, has led to approaches in which care is designed around disease and the doctor dictating treatment to the patient…..

….. We now recognize that a patient centered approach—where care is structured around patients’ needs, values, and preferences and where they and their loved ones are given opportunities to co-design their treatment plan—leads to better outcomes…..

….. The question “What matters to you?” allows patients to disclose their interests, values, and preferences—as full humans, not just recipients of care….

….. The “sick role,” even for a brief time, is a disempowering and depersonalizing state in which patients have to abide by healthcare professionals’ rules—think for a moment about hospital gowns, intravenous line poles, bed pans, call buttons, bed alarms, blood draws, medical team rounds . . . yet each patient is a son or daughter, sibling, parent, grandparent, spouse, employee, employer, and so on, and each has his or her own identity and unique place in life…..

…… The question “What matters to you?” allows patients to disclose their interests, values, and preferences, and it gives the clinical team a chance to appreciate patients as full humans and not just as recipients of care. This is essential to encourage caregivers’ empathy toward patients……

…… Research has shown that patients value the quality of interaction with their caregivers, and their perception of this correlates with their overall satisfaction. Asking patients what’s important to them is an invitation to a collaborative communication space that recognizes the importance of good rapport for successful care delivery. In turn, good communication has been shown to increase patient adherence to treatment recommendations……

…… Asking questions to find out what really matters to our patients is a great opportunity to improve quality in service delivery…..

….. The optimal way to engage patients and their loved ones in their own care is still not fully clear. Moreover, barriers to engagement include some patients’ inability to fully engage (for social or cultural reasons) and providers’ reluctance to engage with patients (owing to time constraints or a lack of clarity on effective methods)…..

….. Methods such as the modified Delphi panel, feedback surveys, and patient advisory committees are some of the ways we can try to engage patients. From personal experience, the value of meeting with our patients with the sole intention of finding out what matters to them cannot be overstated…..

…… I recently asked one of my patients what mattered to her, after attempted pain control did not alleviate her distress. In between tears, she told me about her hobbies and family. A lot of what matters to our patients is outside of our clinical armamentarium, and our success in meeting their needs demands our ability to integrate our care with their lives outside of our four walls……

17 thoughts on “ClinicSpeak: what matters to you?”

  1. Re: "The “sick role,” even for a brief time, is a disempowering and depersonalising state in which patients have to abide by healthcare professionals’ rules."I personally believe there is a sea change in our cultures, both UK and US, whereby individuals are railing against so-called 'experts'. They feel let down and used. It has happened in politics, where experts are wheeled out to fill us with fear, as in Brexit and US elections, and the electorate is ignoring the expert. There is massive distrust.It's happening in medicine too. Just look at the popularity of Dr. Dre on this blog vs. the experts, for example. Dre railed against Big Pharma and MSers liked his jib. It symptomatic of our times, I guess. Experts are damned.

    1. There is something to be said for constructive dialog .vs. name calling and rhetoric neither of which I have any level of respect for.Towards MS and the universe thereof I have been active online for nearly a year now on the MS scene. In that time I simply cannot believe what I have witnessed.Apparently long before I came on this scene the global MS community collective was fragmented or more like shattered.I have an exceptionally decent care team for my MS and have grown to know many patients both local and online. I have grown to know many doctors, researchers, PTs, psychologists, stem cell researchers and then some both local and online.I have connected to patient associations globally, ms centers, hospital systems, geriatrics, pediatrics, cardiologists offline and online. Universities… on and on.MS has made more strides and more "Whoops" than perhaps any other chronic disease in many respects including reporting.Patients look up to most clinicians, researchers and more. However, these entities are unable online to advise them in their pathology.A very small percentile of MS patients are active online, less than 1% of the global 2.n million out there, "active" being the keyword here.Trust is very shattered and atop that at every angle they are asked to donate money, money most dont have, money most cannot even see where it goes.Patients gravitated together as only people with MS can relate to what its like to live with MS. This was pushed, "Everyones MS is different."It is. So is everyone's Lupus, cancer, cardiac disease etc. Patients have gravitated around that phrase and only "We" understand "each other."The result is a small online segment of the global MS patient community having power as the Internet is POWERFUL. Online there are patient leaders and followers. When these patient galaxies formed was before I engaged online. But even there, not one galaxy, but hundreds.Dre for example may have rallied against Pharma but is more than likely unaware of how complex pharma is. In the USA I was floored to learn details and I only received a taste.I pay $35 (US) a month co-pay for my Tecfidera. If its charged out to the insurance carrier at $50,000 and they do what they do with taxable funsies I personally dont care. WHAT I DO CARE about is the cost ending up prohibiting places like India being left dry and people suffering.Since when do people care about how much an insurance carrier pays? They are hurt? They'd be first to scream foul!A DMT in the USA makes little more than Canada in revenue.Patients here are screaming about price even though insurers are paying most of it for most patients. That "gravity" again. Watch what happens. They played right into the hands of insurers. "Thank you!" Expect higher co-pays, lower costs and they'll pass the blame unto pharma and Gov.People want pills to make them better. Most are not real interested in flipping their lifestyles upside down. People with heart disease do this regularly, clockwork or they will die.If MS patients were told, "You need diet, rigorous exercise, remove stress, adjust life and its prescribed, PT" or you wont be with us in 2 years, they'd engage it. Many do. Many more do not. I didnt.Now that I have, I feel better than I have since my diagnosis. Go figure. Doctors were right.

    2. INTERESTINGLY… In addendum to the above. Many (many) if given the choice of their immune systems being murdered and restarted with Stem Cells would do that. At least, thats what they say. Confronted with reality perhaps not.But, working to achieve NEDA and flipping lifestyles upside down appears to be last on the "I'll do it!" list.Does anyone have like "real world examples" of what happens AFTER aHCST? I cant imagine its, "Log in online… stay sedentary in lifestyle… and await all the miracles?"

  2. During my whole journey with MS, all the years of it, the diagnosis, the progression, the lack of treatments, the loss of skills I'd taken a lifetime to acquire, the dogged fatigue, the fear – nothing, but nothing, has been so negative as the process I am having to go through with Department of Work and Pensions to convince them that on some days I can hardly walk and sometimes I suffer bladder incontinence. I am having to go to a tribunal to sort this out – tell a whole load of folk with no medical qualifications the most intimate bodily details. And – from what I have heard from others – I am by no means the only one. I do not have a choice but to go through this. But it is wrong, plain wrong. The medical and welfare system needs to be better linked to spare people this stress and humilation. Not to mention the waste of time for all concerned – me, my medical team, the Citizens Advice Bureau. And the DWP and their sidekick Atos, who might then find something more constructive to do.

    1. Not able to offer solutions but to say no wonder you are thoroughly browned off, hacked off or worse! Yes, it must be bad enough to reveal some of the things you mention in the privacy of the health professionals' surgery but to have to do so at a tribunal should not have to be part of the system. As a British citizen I am disgusted and embarrassed at the way people are being treated by the DWP and atos – dignity and respect need to be restored to the system. BTW have you sought help from the Disability Law Service, which has a dedicated MS Legal Officer? Good luck with your appeal

  3. Keeping my autonomy. That's what matters the most to me. Feeling listened to and having a say in my care. I changed neuro's 3 times to find one that listened. The 3rd one did just that and after just one appointment by mindset changed immediately. I'd spent over 12 months feeling totally alone and overwhelmed, feeling unheard with my thoughts appearing to have no value. Having someone listen to me and give me autonomy over my DMT choice totally changed that. It took just 15 minutes of speaking to a thoughtful neuro. Being able to access the treatment of my choice gave me back hope.

  4. At initial diagnosis when I was not experiencing any issues with mobility but I had lots of physiotherapy and hydrotherapy. More recently, my condition has deteriorated massively over a short period of time and yet I feel as things have got worse I have had less support. It feels almost as if the professionals are shrugging their shoulders as if to say "what do expect and there is nothing more that we can do for you". Whilst undubtedly true, physiotherapy may help me to to deal with some of the mobilitty issues that I am experiencing yet I get no physiotheraphy primarily because I am unable to get to my local hospital which is a 5 minute drive away yet I can longer drive or walk. This pesimistic outlook diminishes my own outlook on life to the point where I feel that I am being a burden & wonder why I should exist.

    1. Does your hospital have Patient Transport. I was paying for taxis for years before I realised there was help to get me to the hospital.

  5. 'What matters to you?' isn't a question well-suited to the constraints of a brief annual 'MS, still? Fancy that!' consultation. Unless a physician has time to listen to the answer, he/she should think twice about asking the question.

  6. What matters to me?First I had the rude awakening with my MS I was my own worst enemy. My care team told me what to do, I just did not do it. Now I do and lo and behold, I feel a whole lot better. Did they make some mistakes. Yep. Not as many as I made.I never thought I had enough time with any of my care team at office visits. Then I found if I organize myself prior to my visit the time actually became very productive.I found educating myself about all aspects of MS gives me the ability to understand my MS. Its not an entertaining learn. I found out a bit over 3 months ago that locally (and we have 17,000 active MS cases in the region) a university over a year ago had MS classes. Educating patients about their disease. They could not fill a classroom of 40 people.I dont expect anymore my care team, Prof. G, his dog, pharma, my PT to take responsibility for my MS. Its my responsibility.Pretty big wake up song to the, "They will take care of me." No. They give me the gift of tools. Its my responsibility to do it. Or, I could sit around and do whatever.Friend of mine sat around all day online with her MS. When she saw my gains it became, "How did you do that?" So. I helped her learn, engage. She now doesnt flounder online. In fact, she encourages others. Her motto, "If I am online living MS then I am letting MS take my life. Its taken enough." She is going to be writing for us once a month.What matters to me?The unfairness of people in nations who have NO choice. In the west we have quite a few choices and many not. In poor nations they have no choices.I think the global MS community needs to unite. That means one galaxy, one universe not thousands of galaxies, one universe. Once its united, lets solve the problems. Lets kick the diseases ass.I am 53, I dont expect to make 73. I dont hope that regenerative medicine will bring me back whole in my lifetime. By the time these therapies come to be I am too much at risk to be a candidate. But I do have hope for others. My world does not revolve around self as thats a lonely unsustainable world.

  7. No I am not happy with how I am treated, which is why I have taken myself off the DMD. I am not prepared to suffer the side effects of a drug when no one is looking at whether it is effective or not. Especially when I report new symptoms experienced during what I felt was a relapse and they are dismissed even before I have a chance to get my words out. Clearly my health is not on the neuro's agenda. So what is? I feel we are unfortunate to be experiencing this disease at a time when the why's and wherefore's of it are still to be determined and the potential for profit once they are is enormous. At this stage, to many, there are more important things to consider than what matters to the patient.I can't change doctor's agendas or attitudes, but I can make myself unavailable to them. I am having problems with my eyes, the optician says the left one is ms damage. The right one is awaiting further tests for suspected glaucoma, which is listed as a dmd side effect. My 2 month old prescription has changed already. The stress of reporting symptoms to the neuro and having them dismissed without any investigations – no MRI, no LP – hurts, like a physical assault, because stress feels like that when you have ms.Right now, what matters to me is that I remove myself from that kind of stress and do what I can to keep myself going for my children. Also, please remember that the patient is living in a body with ms, we have actual direct experience of what it feels like, you need to listen. I have no medical training but I know what it feels like to have no feeling in my bottom, unable to stop my bowel emptying en route to the bathroom. To fall onto the floor when I misjudged where the seat was because I cannot feel the back of my legs or work out what is behind me. To struggle to cross the room because my thighs unexpectedly feel like they are bandaged together. To feel too confused to put a meal together for my family. To knock things over because my hand is shaking. To feel a warm flow down my leg because I didn't know my bladder needed emptying. I know what these things feel like, I know what being overweight feels like and it DOES NOT cause these symptoms. But hey why trouble yourself with the patient's quality of life when you could fob her off and watch the long term effects of a dmd instead?I often question my sanity beacuse I am not 'me' any more, and that is the worse symptom so far. I read back over this comment and wonder whether I should delete it, am I just rambling on about nothing again, does my opinion even matter? Probably not, but a neuro asked 'what matters to you', and that's pretty special.

    1. Of course your opinion matters. I've had to adjust my health care team at times because I did not like the trajectory and I've had to adjust it as clinicians went to other HMO's.With the DMD's it can take months and months (4-6) to settle in. But if the side effects are too bad most neuros will switch to a different therapy.You clearly need help. Contact your local MS Society and see if they can assist you in forming a care team and help you navigate MS.

    2. Ms Unites, thank you for your response. I am looking at my options and will be speaking to a few people/organisations. I think the question 'What matters to you?' needs to be aimed at the neuro by the patient because if say, the neuro's priority is research, the patient may not receive effective care, which is not only unethical but what kind of person does that? But I guess at that level of intelligence something has to give, they can't be all things to all people. I for one though am not available for underhand experimentation and will be seeking a neuro free from COI, assuming they exist given the relationship between doctors and drug companies.Science and research is important (I am only here thanks to the man who invented the Epipen) but it should be kept seperate from patient care if they can't act appropriately.

  8. I would like the medical community to start taking a new approach. I'm progressive and always have been since diagnosis. So all the DMTs in the world aren't going to help me.I know new drug treatments are being developed, but they’re all years away, and even when the drugs arrive, they’re usually only preventing further damage, they’re not repairing the damage you already have, so why aren’t we being offered technological answers to some of our symptoms – like FES? It would cost the NHS very little (in NHS terms) to, say, offer an FES to everyone with MS who has walking difficulties – and potentially improve our quality of life greatly (not to mention reducing the risk of falling and making mobility easier for longer, thereby preventing other health problems that will cost the NHS money).I heard years ago about devices which, in effect, bypass the nerve damage so that the bladder and brain were properly in touch again – wouldn’t that be great! No more accidents and sudden urges (not just for MS, anyone with spinal cord damage would benefit) – never heard of this again. But again, the potential savings for the NHS (incontinence pads, catheters, etc.), not to mention the benefit to the individual, for a probable small upfront cost.Medication isn’t always the solution, but technology could fill the breach for some things, isn’t it time we started looking for more creative solutions?Isn't it time for NICE and the NHS to lose their obsession with QUANTITY of life, and start assessing QUALITY of life? I don't need (or necessarily want) to live to be 90, but I would like to be able to have a better quality of the life I have remaining…

    1. Unfortunately this gets very complex very fast. If for example FES were offered to every citizen where its applicable in MS in the USA it is also applicable to other diseases. Costing .vs. savings is almost always a roulette wheel in health and thats what insurers are. Governmental or private they are statistical gamblers be it car insurance or health.How does it prioritize? How does it support usage? How does it measure gains or losses in MS? I for example know someone who is using an exoskeleton, the cost of teaching and therapy to use it is more than the cost of the device.There is a great deal of technology underway towards neurological purposing.NEDA is so important in RRMS for the reason of "treat to target."Not many years back that was a pipedream. Interferon did not allow efficacy to consider "treat to target" (a goal). Instead it was, "This is all we can do in as far as medication".The DMT's for RRMS have come from enormous amounts of research and better understanding of the immune system and not strictly from MS but multiple disciplines.PPMS / SPMS now have the reticule coming to bare on them.The questions in need of answers were difficult to try and connect.In respect to preventing further damage that is a first line goal. Trying to regenerate that which still incurs damage is difficult and for many reasons. Regenerative medicine has not stalled based upon disease treatments. It is well and alive and in fact perhaps more prolific than targeted MS therapies.Regenerative medicine is applicable to a very wide variety of conditions which would explain its rather profound march.The immune system is still being understood. Its far far far more complex than anyone ever would have imagined just 25 years ago, almost prehistoric in what has and is being learned now.Why… Just over this past weekend I was reading some new research that suggests the immune system has a significant role in heart disease and heart attacks / Arterial blockage.

  9. I'll use an example to illustrate my point – hearing loss. If you can't treat it with a drug, you get offered a hearing aid – by your medical team. The NHS will offer you a perfectly good one, if you want something swish, you have the opportunity to buy your own.I have progressive MS which affects my mobility, there are no drugs to treat it, therefore, why am I not offered the NHS version of a mobility aid – FES (cheap and cheerful, but technology, not medicine)? But a mobility aid could ensure I could work for longer (remaining a tax payer to the government) rather than having to retire (becoming a tax cost for the government). That doesn't seem to me to be too difficult to quantify.

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