Patient involvement, or not

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

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

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

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

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

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

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

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

Dear NHS, we want to be involved in the way that you say we should. You talk the talk, but will you walk the walk?

Dominic 

theMSguide.com 

About the author

The MS Bloggger

12 comments

  • Well said.

    It is about time the MS Charities took note and helped more. To me they have become behemoths and consume so much of the money they raise for their own administration that very little funds are left for research and making things happen that are important to their constituents, i.e. people living with MS.

    • Some charities much more so than others. Nonetheless, there is a woefully low representation of pwMS in the actual charities themselves.

      • Thanks for raising this Dom.
        I wanted to donate to the Barts charity but think I read a comment on here that the money goes not towards the MS department at the moment.
        Would be good to get some clarity on where to help the research from here. Very helpful to pwMS and I trust every writer of this blog to represent us in the NHS if we can’t be represented by ourselves
        I was wondering if it could also be added to Benevity
        Lots of companies use this and employees can donate a portion of benefits to charities through it

  • Nothing about us without us. Patients first.

    https://eupati.eu/

    EUPATI provides training for patients and patient representatives on the end to end process of medicines research and development. Trained patient experts are the core resource for patient involvement in medicines R&D, regulatory deliberations, and other patient engagement initiatives. EUPATI is committed to changing the face of patient engagement through patient education.

  • While I wouldn’t entirely agree with Boaz; I welcome research and drug development by experts in MS medicine and medication, I do agree that once the work has been done and treatments and meds are available we, the patients, should be involved. It does depend on us being well informed though. So; how to enable us to be so informed? There are ways to do this. If you’re reading this (and other blogs like Dominic’s, ShiftMS, MS Society, Aaron Boster, Dr Beiber, MS Trust and the American MS society) you’re well enough motivated and probably well enough informed to have input.
    Our local healthy eating trainer working for our surgery, sometimes refers newly diagnosed pwMS to me, to take them through the basics (what you need to know about MS and treatment). I keep a person with ppMS abreast of MS developments but she is no autodidact and doesn’t really have much motivation to know more about MS. She is one of that cohort that simply wouldn’t want greater involvement.
    It’s also worth doing a Future Learn course on research. I’ve done two and am now observing RECs (Research Ethics Committee) with a view to becoming a lay member of one. Knowing how research works is a great advantage to any one with a chronic condition. It empowers one to be more pro-active in one’s care.

  • Bravo. The prescribing algorithm is only as good as premise that supports the algorithm. How can it not be faulty if it isn’t at least partially informed by pwms? I especially feel that since Pwms do not have a static disease, they need a different measurement of PT success than an accident or stroke victim. Why do PWms not get ongoing year round functional program aimed at maintaining their ability levels? Isn’t it cost effective to keep Pwms functional? While Maintaining ability is important goal, evidence based protocols used to rehab other neurological diseases should also be employed to help strengthen MS muscles. Why are they reserved only for the most severely paralyzed pwms.? The pandemic has shown, if anything, that delivery of care can be done cost effectively, remotely, and in groups. Bring it! Improve the quality of MSers lives by rethinking ALL the algorithms for our care.

  • Sounds good.
    But in my experience, neurologists are not happy when you try to get involved and try to read some scientific work on the DMTs you’re interested in.
    Maybe that’s a good question for prof G or other doctors: could you advise patients on how to approach their neurologists if they want to get involved in their treatment?
    I feel if I don’t read up on the treatment, I’m really not informed enough to discuss it and I just have to accept whatever the neurologist is saying, since he’s my main source of information.
    But if I do read up on it, I’m somehow overstepping some line, and my neurologist is not amused when I throw in an additional consideration or argument.

    • I believe it depends on the neuro a lot – mine occasionally refers me to papers, even.

      But I fully support expanding on the topic of how to best work with your neuro.

      • I am a relatively new and late arrival to the MS party. When I worked my job involved me looking at procurement decisions where you had complex situations and often people who were experts. I was employed to be external to this and to try and make the issues clear to the decision makers.

        Since having MS , I have gone through the fear of what is going to happen next (I was diagnosed after what I now realise was not my first relapse hospitalised me). I was very fortunate that I had a friend who had had MS for nearly 30 years, so I had support in the 2 or 3 months before I met my MS nurse. Where I was hospitalised did not have a neurology department let alone an MS specialist (diagnosis was through tests directed remotely). My decision process on DMT was based on the information from the MS Society and Trust. The consultant did not game the diagnosis (as some do) and so I was left with a limited choice.

        My choice was based on fitting them around my desire for travel and going for the most effective available.

        Having made my choice of DMT and reconstructing a new fulfilling life, COVID came along. One element of my survival package was to do online learning which led me to look at a lot of aspects of the health service.

        The outcome of all this is that I have not discovered the unified Model of MS, but see lots of enclaves beavering away on their pet subjects. A couple of weeks ago I saw a put down by Prof G on a non MS Neurologist statement that the money spent on MS drugs would be better spent on more Physiotherapists. I do not believe it should be an either or, but I have not seen anything considering this sort of trade off. I think the service to pwMS is actually dysfunctional in some parts of the country perhaps it works better in others.

        I would like to believe there is an organisation with the big picture for EVERYONE with pwMS, but I feel will be disappointed. Perhaps when my brain is dissected they will find the answer, but that will be too late for me!

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