ClinicSpeak: a new era of more limited patient engagement

Are we entering an era of more limited patient engagement? #ClinicSpeak #MSBlog #MSResearch

“I saw a patient earlier this week who came to the Royal London Hospital for a second opinion. She had been under the care of a neurologist at another London teaching hospital, in a general neurology clinic, for 5 years. The particular neurologist had taken the ‘watchful waiting’ approach to DMTs; in his opinion she did not meet the UK guidelines for DMTs. The straw that broke camels back was that when she asked him about the two new oral 1st-line DMTs available in the UK he did not know about them. Interestingly, the two medical students sitting-in on the consultation had heard about them. As a result of this, this patient sought a second opinion. This lady has been living with active MS for the last 5 years and should probably have been offered DMTs 5 years ago. In the last 5 years this lady has had several ‘mild’ relapses, developed unsteadiness of gait and has lost her job. Although she is fully mobile and functional, MS has had a major impact on her life. He current MRI shows a high lesion load, three Gd-enhancing lesions and obvious brain atrophy. This clinical vignette shows that with the emergence of multiple DMTs the management of MS is becoming increasingly complex with a strong argument for the disease to be managed by sub-specialists. If not the latter, then we as a community need to make sure that general neurologists are up to speed with the new DMTs and the shift in the treatment paradigm to early effective therapy with treat-2-target of NEDA (no evident disease activity).”

Saying No to patient-choice!

“The other thing that is becoming obvious that patient- or MSer-led decision making is becoming more difficult. There are simply too many DMTs for MSers to be able to understand all the intricacies of  treatment to make a truly informed decision. I am therefore moving back towards clinician-led decision making in which the neurologist and team of healthcare professionals decide on the treatment strategy and provides the MSer with a smaller, more limited, number of options. For example, I saw a new patient in my MS clinic yesterday who had highly-active MS; 3 relapses in her first year and 2 disabling relapses in the last 12 months with an active MRI. Her MRI has a large number of posterior-fossa lesions and she has already developed some fixed disabilities (unsteadiness of gait, bladder dysfunction and right-sided weakness), both of which are poor prognostic factors. As this lady has rapidly-evolving severe MS, a sub-type of highly-active MS, and a poor prognostic profile I only offered her two options, natalizumab or alemtuzumab. I simply explained to her why it would not be appropriate for her to be offered other less effective 1st-line therapies. If she chooses natalizumab, and turns out to be JCV-seropositive, she will only have natalizumab for 12 months and will then be transitioned onto fingolimod. This lady is very fortunate that NHS England are allowing us to use natalizumab and alemtuzumab as 1st-line options. I am aware that in some healthcare environments this patient would have to be started on a less effective 1st-line therapy and would only be able access more effective therapies once she had failed one, or more, 1st-line therapies.”

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • I am all for a joint decision with neuros taking the upper hand if too much confusion but first an MSer needs to find a neuro who is up to date which is not so common in rural areas, especially when it's not a MS specialist.

    • I tried unsuccessfully to find the MS Decisions website a couple of weeks ago, would you please point me in the right direction?

    • Re: "Prof G is there any chance of you updating the MS Decisions website? It is very out-of-date."

      Unfortunately, not! I have resigned from the committee due to other commitments. I would also not feel comfortable subscribing to the current NHS England DMT guidelines; they are behind the curve and don't address T2T-NEDA or end-organ damage.

  • I completely agree with this and would have welcomed more advice and guidance at diagnosis rather than a wishy-washy, 'it's up to you'. However I do want to be fully involved in discussions and keep up to date. What I would also like is a monitoring MRI but they are not allowed. I tried asking my neurologist whether my MS was active or not (as advised by Prof GG at the MS research day) but was rather dismissed.
    I feel so sorry for and a bit angry for the first patient in this story and feel there is a real need for MS management in the UK to be improved. The new NICE guidelines do not help or guide an improvement at all sadly.

  • Would a patient with a brain tumour be under the care of a generalist neurologist ? Of course not !! So why are so many MSers ? We have have damage to our CNS but we need our care managed by experts or someone who at least is up to date with all available DMTs. Through social interaction I have encountered three recently diagnosed MSers who have had no discussion or been provided with any info about DMTs. They didn't even know about meds to help control some of their symptoms.

  • Is it specifically right sided weakness that holds a poor prognosis or is it just fixed weakness in general?

  • I have always had concerns re my Wife's treatment and not just when it comes to DMDs as she was classed as ppms.
    It appears to me at least, that a lot of people charged with the health of someone dx with MS have little understanding of symptoms and treatments nevermind the latest available drug.
    It's all to easy to write up the notes to look like a pro active approach has been taken when in reality all you get is another appointment in 6 months. Now, anyone could read this and have the view you need to take more responsibilty for yourself, but believe me I'm not sure what else I/we can do, add that to your post and forgive me if I quoute 'Dad's Army'
    " we're all doomed, doomed I tell ye"

    Regards as always.

  • I have recently moved from just outside of London to rural Wales. (Great for life quality but not so great for my MS treatment). I don't want to sound difficult but I am honestly despairing at the level of treatment here in Wales. I want alemtuzumab when it is available. I don't think I'm going to get it as my latest neuro didn't know anything about it. I will however, fight for it as I decided last year, with the help of your blog that I would manage my own condition. I cannot rely on MS clinics and neurologists alone so I keep myself up to date with all the latest MS news and manage my health and drug choices accordingly.
    I despair of being at the sole mercy of the doctors I have seen so far. I'm sure there are pro-active good ones here but I'm struggling to find one.

    • Thanks Mouse, that's where I'm trying to get into but my postcode is outside of their area. I'll keep trying though as have heard good things about Cardiff Heath.

  • I am proactive, educated myself and pushed for the treatment I wanted. The bottom line is that the first DMTs are moderate at best. Worse, they give a false sense of security i.e. they are not delivering NEDA. I want patients to be given a strong steer by neuros – neuros will have real life experience of how their patents are doing and will chat to other neuros.

    I see that the ACTRIMS / ECTRIMS conference in September is covering the issue of treating to acheive NEDA. Unfortately the likes of Biogen and Teva aren't going to give up their cash cows easily e.g. avonex and copaxone. These first generation drugs are the equivalent of 1980s mobile phones. Role of 2015 for news on the anti CD 20 drugs.

  • And how many MSers are even aware that the have a right to a second opinion? Unless you're fortunate enough to have a brain (despite its lesions!) that can deal rationally with all this, you're stuffed.

  • I am lucky enough to be married to a nurse. Even treated at Hopkins in the U.S. (one of the better hospitals), I simply did not know what I did not know. So I relied on my wife's questioning, and even with that edge it took me more than a year to read up enough to feel like my questions were relevant.

    I think one of the best questions I have been given to ask over the years is "If you were in my place, what information would you most want to know beyond what you have just told me? Now what does that mean for me in English I understand?" The second question is one I still use when I don't understand and my wife is not around to ask for a translation. I've read enough medical journals for a previous job to avoid complete ignorance, but I am not in the medical field. I think admitting ignorance is something many of us have a hard time doing, but I want to understand decision making processes.

    That said, I can respect those who take the approach of "I went to the expert, and what's the point in that if I will not believe him/her on the best course to take."

  • ProfG

    When you refer to such cases and the actions or rather lack of actions from some neurologists do you challenge such practice or whistle blow? Is it that some neurologists are incompetent and not fit to practice or are the current commissioning guidelines too ambiguous to translate?

    How can patients be expected to make informed decisions when they are not given the information to do so?

    As gate keepers a high level of professional integrity is surely required.

    • It seems that NHS staff do not like to whistleblow.

      I was referred to the hospital as routine non-urgent for my double vision (17 day choose and book). GP made grave error and thought my double vision was part of BPPV. Should have been same day referal. I didn't know at the time double vision was same day referral. On the referal letter he didn't even put the double vision he just put vertigo. My VI nerve palsy was triggered by an ear infection. The neurologists (2) that are aware of this say they would prefer not to make a comment and are not prepared to whistleblow. I was not only suffering from the VI nerve palsy I had severe phonophobia and severe hypervigilence at night time making me very stressed and very very anxious. Got to have steriods a week later and had a 12 month severe relapse. My MS went brain to lower spine in 30 days. I often wonder what state my body would be in now if the GP referred me as urgent. Its with NHS England being investigated. The three neurologists involved seem to not understand a VI nerve palsy can have complications.

    • In my experience the onus is very much on the patient to blow the whistle as the departments involved seem to close ranks. The whole process of complaining is tiring and stressful in its self. The NHS complaints policy falls sort in a number of areas sadly.

  • I don't believe it's that difficult for a general neurologist to get uo to speed with MS. The diagnosis isn't that difficult. If a patient arrives with a set of symptoms that appear to point to MS they get an MRI and the radiologist writes a report. Once the diagnosis is sorted, then surely a general neurologist can look at a one page list of the treatments available and discuss the options with the patient. The they get referred to an MS nurse who does the donkey work. In the medical profession there are consultants and consultants. I don't think neurologists can sit aside heart surgeons or oncologists. Neurologists fail in two big ways (i) they don't understand the causes or what drives the diseases they cover (MS, MND, Huntingtons… And (ii) they don't offer cures (or anything remotely near to a cure) for the diseases (see list). We shouldn't praise any professionals who don't deliver no matter how nice they are. If a neuro doesn't keep up to date with the latest developments in the diseases they cover they should be sacked. Even electricians have to pass annual update tests.

  • Prof G, have you written to your patient's neurologist, before posting this blog? If you don't communicate how are things meant to get better? I've noticed in recent years cancer specialists are a lot worse, they quote statistics at you and don't read your notes.

  • I agree there is no excuse for neuro's not keeping up to date with treatment options whether specialist or not if they have MS patient's under their care. If its outside their experience they should either get educated or refer to someone more competent. I really hope you have reported this neuro ProfG as this lady's life has suffered as a result. I'm all for patient advocacy but It shouldn't be entirely up to patients to complain about poor care. You are in a position of power after all and the profession needs people with integrity.

  • I would hope that you would at least tailor the amount of information you provide to the engagement level of the patient. Though I was completely surprised by my diagnosis and completely ignorant of neurology, I made it my business to learn everything I could as soon as possible. I would have wanted more information and participation than your example patient.

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