Complaining
I would suggest you document the specific issues you have had with your MS service and then meet with them to discuss the problems one by one. If they refuse to meet with you, I suggest you ......
“EVERYONE ‘operating’ in the MS medical field has FAILED. All Charlatans! I have never met a decent clinician or consultant in my experience of this b.s. World. They are just lazy paint-by-numbers, not-responsibility-TAKERS in a crumbled NHS. I am very unwell now, after having been super fit and strong. It might be the 2 years it took to send me around for a missing diagnosis that I found out myself before them. Covid came and delayed a further year before they forgot me for another year’s treatment, while my so-called specialist hid, not seeing me in person for 4 years! Shameful service. DISGUSTING & DISGRACEFUL, this charade has to stop - someone out there somewhere must expose this cruel facade.”
This comment from yesterday needs a considered response.
As in any chronic disease area, healthcare professionals and doctors, in particular, are criticised for delayed diagnoses, misdiagnoses, poor management, poor communication, and various bottlenecks in the system. As leaders, often reluctant leaders, of their teams, they tend to be blamed first when problems arise in their service. You only have to analyse many of the comments on MS-Selfie, including the one above, to appreciate the depth and breadth of this problem. In the past, doctors, including myself, would take the criticism on the chin, resolve the issue, apologise when we were wrong, learn from the experience and move on. This is part of the job of being a doctor, regardless of which healthcare system you work in.
However, in the current environment, many organisations that represent and support doctors are fighting back. Doctors are not to blame for the disarray of healthcare systems; they are simply workers employed by the hour, half-hour or, in the case of some job plans, every 15 minutes have to be accounted for. Doctors are now just one cog in a complex machine referred to as the healthcare-industrial complex.
Another issue is that doctors are never really taught to be leaders. We have no formal training in how to become effective leaders. This explains many of my career failings and shortcomings as a neurologist. Many people confuse being a manager with being a leader. Management is simply the implementation of what a good leader wants. In general, doctors are pretty skilled at management due to the skills they acquire as medical students, which are honed through disciplined learning. These skills do not necessarily equate to being good leaders.
Leadership is about vision: what you want your healthcare service to achieve and the philosophy and principles that underpin the service. Once these are established, you then need to determine how they should be resourced and implemented. This requires employing sufficient staff, training and motivating them to buy into your vision, and implementing standard operating procedures to deliver high-quality, value-driven care, which is also a key aspect of the NHS. Your staff need to sing from the same hymn sheet and work as part of an integrated team. Leadership is hard, and good leaders are rare.
Doctors also have different skill sets. Neurologists who are brilliant diagnosticians are not necessarily the best people to tell their patients they have disease X due to a lack of empathy and poor communication skills. Many of you have shared your poor experiences of the MS diagnostic process, with some of you describing post-traumatic stress responses. Finally, once you are through the diagnostic process, the doctor who diagnosed your condition may not be as effective in managing your long-term care. The reason some doctors struggle to manage chronic conditions may depend on the configuration of the healthcare system in which they work. They may work in a district general hospital without access to specialist services, or they may not be allowed to prescribe high-efficacy MS disease-modifying therapies.
Most of a doctor’s early training focuses on diagnostics, i.e., how to make accurate diagnoses and avoid diagnostic pitfalls. Some doctors lack confidence and sometimes experience, and therefore err on the side of overinvestigating patients to improve diagnostic accuracy. The more investigations required, the greater the delay in the diagnosis. These doctors tend to improve over time; if not, they are eventually exposed and criticised by the bean-counters (NHS managers and insurance companies) as not providing value. These same bean counters are hoping that AI will improve the diagnostic efficiency of their workers. I suspect that AI is likely, at least initially, to have the same diagnostic blind spots as real-life doctors. Maybe I will be proved wrong?
I recall being taught by a brilliant South African consultant neurologist, Dr Alec Ming, who made us think about the value chain and the cost of overinvestigating patients. According to Alec, our first responsibility as diagnosticians is not to miss a serious, life-threatening, or life-altering diagnosis that requires urgent treatment. Once we have done that, we need to remember the maxim that ‘common things occur commonly’. After generating a differential diagnosis, i.e. a list of possible diagnoses, he made us create three tiers of investigations based on probabilities. In other words, conduct Tier 1 investigations first, obtain the results, and reassess accordingly. Only move onto Tier 2 and subsequently Tier 3 investigations if necessary. He also made us step back at each stage of the diagnostic work-up and ask if anything had changed in the interim, if we had missed anything, and to ask ourselves if this could be anything else. The iterative process of asking these questions should never stop. Even when assessing a person with an established diagnosis, for example, MS, you need to ask whether this is MS or if the current problem is due to another disease process. Don’t forget that at least one in twenty people diagnosed with MS are likely to have the alternative ‘correct’ diagnosis.
In the modern era, managing chronic neurological conditions is a team effort. The days of the solo medical practitioner are long gone. The education of recently diagnosed people with MS is a complex, long-term process that needs time and perseverance. The initiation and monitoring of disease-modifying therapies is a team effort. First, the presentation of the pwMS at the MDT (multidisciplinary team) meeting requires the involvement of another neurologist, a neuroradiologist, an MS nurse specialist, a neuropharmacist, and the MS team administrator to discuss the case and document the treatment recommendations. When it comes to starting treatment, there are baseline blood tests, vaccine advice, vaccination, and answering questions that tend not to be done by the neurologist. Similarly, when it comes to managing pwMS in the long term, the extended team beyond your neurologist does most of the legwork. Blood monitoring and ensuring patients receive their prescribed medication on time, including monitoring MRI results, remote disability monitoring, and administering vaccines, among other tasks.
When it comes to pwMS with symptomatic problems, it requires connecting with other teams, such as those in continence, rehabilitation, neuropsychology, pain, spasticity, neuro-psychiatry, speech and language, dietetics, tissue viability, ophthalmology, palliative care, endocrinology, podiatry, social care, and social prescribing teams, among others. It takes far more than a neurologist to manage a pwMS; it takes a responsive healthcare system, social care system, and society to manage someone with a disabling disease such as MS. So, when someone with MS criticises their neurologist and MS team, it helps to consider all these factors and try to highlight where the problems lie concerning their care and lived experiences. Is the neurologist at fault, or some other part of the complex management pathways that exist for managing pwMS. During the COVID-19 pandemic, we experienced a significant issue with accessing annual MRI monitoring scans. This was because the throughput via each scanner was significantly lower due to social distancing and the need to disinfect the scanners between each scan. So that our service would not grind to a halt, we started scanning stable patients with MS on high-efficacy DMTs every two years. This is a compromise, and whether it impacts MS outcomes has not been prospectively studied.
Suppose you think there is a problem with how your MS is managed. In that case, you need to collect personal data regarding the timings and responsiveness of your MS service, as well as who and what is responsible for the problem in the service you are receiving. For example, many delays in getting pwMS onto treatment are often down to how quickly we can get patients vaccinated. As the NHS budget for vaccinations resides with general practitioners (GPs) we need the GPs to play ball with vaccinations. An obvious solution for this is to allow MS centres to administer vaccines. This simple change is a bureaucratic nightmare, as the vaccine budgets reside with the HSA (Health Safety Agency), formerly known as Public Health England, rather than the NHS. The HSA has a contract with GPs for vaccinations and not hospitals or NHS Trusts. Another issue is that many services are community-based and linked to general practice; therefore, we cannot refer patients directly to them, and referrals must go through general practice. This causes many delays. An example of this is counselling and CBT (cognitive behavioural therapy). Have any of you experienced delays in referrals due to bottlenecks in general practice?
Another potential issue is the system. When you have thousands of patients in a service, you rely on systems to work. Most systems have some level of resilience built into them, but they occasionally fail. For example, two staff members who cross-cover each other may be off work together. This is why we advise our patients to contact us if they have not heard from us by a specific time, for example, to follow up on their MRI booking or results, their next infusion appointment, or a referral letter. In the modern era, MS management is a partnership, and pwMS need to have agency and take some responsibility for coordinating their MS care and self-managing various MS-related symptoms. To address this, we have recently written a review article on this topic and included this figure to promote a new paradigm for managing multiple sclerosis (MS).
I agree with this commentator that doctors, other HCPs and healthcare systems are not perfect, but we try to manage pwMS as best we can. I don’t accept that we are charlatans. Many of my colleagues go out of their way to help their patients and provide them with the best care possible, despite the very challenging environment in the NHS. I don’t recognise my colleagues as being lazy, nor do I recognise your criticism about not taking on responsibility. It is impossible to practice as a healthcare professional (HCP) without taking responsibility for your decisions and the care of your patients. I would suggest you document the specific issues you have had with your MS service and then meet with them to discuss the problems one by one. If they refuse to meet with you, I suggest you contact the NHS PALS service (Patient Advice and Liaison Service). I am confident that you can resolve many of the issues through a sensible discussion with your team. You need to have a good working relationship with your MS team for your future care. I can’t stress the latter enough. I hope you find this newsletter helpful.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
I can see both points of view. As someone with diagnosed MS for over 30 years, I am still amazed by how varied the approach of medical professionals to MS is. I am also amazed how old and clearly poorly thought-out arguments continue to persist.
There will still be people with MS being told their problems are "all in your head" despite that concept being completely dispensed with years ago in the WHO ICD-11 standard interpretation of disorders.
I have lost count of how many medications have had a turn at being the 'gold standard' only for time to see them being rubbished by the same people who were promoting them a few years earlier.
I'm yet to see an MS team outside the setting of an acute attack. My guess is most people only have the team they put together themselves. Like most people, I see a neurologist for 20 minutes once a year, and he does the same tests that were being done when I was first diagnosed in 1994. If I mention the EBV concept, he doesn't leap out of his chair and say "Yes, isn't it interesting". Instead, he steers the conversation away or terminates the appointment.
Physios are worse. They can't grasp the difference between an upper motor neuron injury and a peripheral injury, so they suggest the wrong exercise and make stupid comments like 'use it or lose it".
I see where you're coming from but that is just your perspective. From what I have experienced, there is very little difference between the approach taken to PwMS now compared to the mid 1990s. There might be a plethora of new drugs but there is no change in attitudes that I can detect.
As with all professions, there are good and bad. It’s no secret these days that not all doctors are vocationally motivated by interest, purpose and meaning, for some ego, status and pay have been primary in determining their career. Some act with decency, honesty and integrity; others harm and lie with impunity. Amongst my own experiences, I have encountered doctors across this spectrum. I recognise the grievance at the heart of the complainers message - a costly lack of attention, care and compassion. It is also the case that my first neurologist was a truly exceptional humanitarian. The truth is that there can be huge discrepancy in quality of care doctor to doctor - it’s a matter of luck (and location) how you land, with huge ramifications for your health outcomes. Systemic failings are driving the problem and so to is medical culture - tribalism, an unwillingness to be open, transparent and accountable and a lack of humility. Highly negative patient experiences are no longer an anomaly - and this is the biggest risk to the NHS.