Raising the Bar – Prof G's MS Blog Archive

How flipped is your consultant?

Barts-MS rose-tinted-odometer: ★★

If you don’t measure it you can’t change it. The fact that the UK was performing so poorly relative to other EU countries on the EMSP’s MS barometer was one of the reasons why I got into MS politics and helped put together the ‘Brain Health: Time Matters’ policy document.

In 2015, despite being the second wealthiest nation in Europe, the UK was in the bottom three of the EU league table in terms of prescribing DMTs, particularly high efficacy DMTs. Fortunately, things have improved slightly and we are now mid-table, but way below average (see figure below). Is this good enough? NO! The under-treatment of MS in the UK will obviously be linked to poorer outcomes, i.e. more disabled, more unemployed, more demented and smaller-brained people living with MS in the UK compared to comparator countries above us in the league table.

I am often asked if I had MS what country would I want to live in to have my MS treated. I rarely hesitate, it has to be either Sweden or Australia. Why? Because these two countries have universal healthcare policies and they both allow their MSologists to manage MS how they see fit. This is why both Sweden and Australia have about 70% of their patients on high efficacy DMTs. There are also no Swedish or Australian DMT police standing over their consultants saying you can only use drug X or refer this patient for HSCT if they fulfil these criteria. Yes, the Swedish and Australian healthcare systems trust their consultants to get on with the job they have been trained to do, i.e. to treat MS with very little central interference.

Some conservative neurologists argue that both Sweden and Australia are over-treating MS and by doing so they are exposing people who will eventually turn out to have benign MS to unnecessary risks associated with high-efficacy DMTs. Please remember that only a small minority of people with MS turn out to have benign MS. Therefore the non-Swedish-Australian or conservative approach to treating MS puts the majority of pwMS at risk of under-treating their disease to protect the minority. This could be referred to as the anti-vaxxer approach to treating MS; let’s not treat MS aggressively so that we harm nobody.

In comparison, the Swedes and Australians will be exposing a small proportion of their benign MS patients to unnecessary risks to offer the majority the protection their brains need from under-treated MS. This is like the public health approach to vaccines; let’s treat MS aggressively to improve the outcome of the majority and by doing this we are prepared to accept some collateral damage in terms of adverse events.

Another argument that is often used against the active-treatment approach of the Swedes and Australians is that if everyone ends up on high efficacy therapy what do you do next? I counter this argument by saying these patients are probably on high-efficacy treatment because they need to be on high-efficacy treatment.

The other issue that needs discussion is the variation within countries and even within MS centres. When I first saw the DMT prescribing data from Blueteq, the NHS high-cost drug database, I was appalled. There is such wide variation between UK centres in terms of DMT prescribing behaviour that even NHS England are concerned. It can’t be right that some MS centres have 80% of their patients on high-efficacy DMTs and other centres have less than 20% of their patients on these treatments.

Some UK centres don’t prescribe some classes of DMT. In fact, the latter may be illegal. There is in fact an act of parliament stating that NHS centres have to offer NICE approved therapies. Therefore refusing to offer and treat someone who is eligible for say alemtuzumab could be legally challenged. As a result of this variation, we started the Raising-the-Bar initiative to address variation in MS service provision across the UK. A national audit is the keystone of this initiative and all MS centres will be able to see how they are performing relative to the national average and other regional centres. Hopefully, this national audit data will act as the catalyst to stop the scourge of undertreated MS in the UK.

The audit data will be so granular that it has the potential to expose outliers at the individual consultant level. For example, if one consultant has no patients treated with alemtuzumab, cladribine or HSCT and his/her colleagues in the same centre has substantial patients on these treatments it may trigger a review of that consultant’s fitness to practice as an MSologist. I am sure many neurologists will be appalled by this suggestion, but this type of individual performance review is widely used in surgical specialities and will arrive in neurology soon. In fact, it already has in some countries. If you are an epilepsy expert and are not referring a certain proportion of your patients for epilepsy surgery every year then you will have your fitness to practice as an epilepsy expert questioned. Epileptologists have agreed that a small number of patients with drug-resistant epilepsy will benefit from surgery and if one of their colleagues is not identifying and referring these patients for surgery then they are not practising according to international standards.

My dream is that every MS centre in the UK will not only have access to their audit data for quality and performance review but patients will be able to access this data on a publically available website so that that can ascertain how conservative or active their MS centre is at treating MS. My vision is to have an MS-Advisor app modelled on TripAdvisor that will allow patients to review and provide feedback on their MS service. There is nothing like a bad review to change behaviour.

So if you have MS and think your disease is being under-treated you should ask your HCP for their audit figures, i.e. how many of their patients are on DMTs, how many are on high efficacy DMTs and how do their figures compare to their colleagues and to the national average. If they are not prepared to provide you with this data you can always put in a freedom of information request.

Yes, the Raising-the-Bar national audit is going to make it hard for participating centres to not participate in the audit and to ignore their own audit data. The objectives of the RtB initiative is to raise the standard of MS services for pwMS, to reduce the under-treatment of MS and to ultimately improve MS outcomes and the quality of life of our NHS patients.

So when I ask has your neurologist flipped; I mean has your neurologist adopted a more active approach to treating MS. Are they flipping the pyramid?

Conflicts of Interest

Preventive Neurology

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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 the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

Is that revolver loaded?

Barts-MS rose-tinted-odometer: ★★

Are you lonely? Have you lost a loved on during COVID-19? Have you lost your job or had to reduce your income because of COVID-19? Can you make ends meet at the end of the month? Are you worried about your future? How is your relationship with your partner? Are you depressed? Anxious? Are you sleeping well? Are you drinking too much alcohol? Are you feeling guilty? Self-loathing? Failed ambitions? …..

These sorts of questions rarely come up in a standard MSology consultation because most classically trained HCPs working in a secondary or tertiary care environment haven’t been trained to deal with what we refer to as the Social Determinants of Health (SDoH). However, it is clear the SDoH have an outsized impact on health outcomes, which is likely to include MS outcomes. This is why we launched our #ThinkSocial campaign several years ago and have started several activities to see if there is anything we can do to help tackle the SDoH.

A story: Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner…..

What should Prof G do to manage this patient?….. find out.

I can clearly see the cynics saying ‘focus on what you are trained to do and leave the SDoH to general practice, social care and the charitable sector’. Yes and no. Yes, it is easy to say this is not my responsibility, but when you are trying to do your best medically to improve MS outcomes only to get trumped by the SDoH it makes it look like your service is failing. Our patient population in the east end of London is one of the most deprived populations in England. When we recently analysed deprivation data from HES (hospital episode statistics) the only area worse off than us in England was Liverpool. On the other end of the scale were Cambridge and Oxford. So if we compared outcomes of the MS patient populations in Liverpool and east London and note they are doing worse than pwMS living in Oxford and Cambridge it may not have anything to do with our MS and other services, but simply represent levels of deprivation and its associated poorer outcomes.

How SDoH result in poor outcomes is likely to be due to the effects of chronic stress on the brain. Stress is a well-defined biological or physiological response of the body. Stress results in high levels of so-called stress hormones. These stress hormones have a direct and negative effect on the brain and other organ systems, which causes them to age prematurely and malfunction. Ask anyone who is stressed and they will tell they don’t feel well. Stressed people and stressed populations are more forgetful, more tired, have poorer sleep and tend to engage in unhealthy behaviours (smoking, alcohol, poor diet, sedentary) and have much higher mental health problems (depression, anxiety, addiction, suicide). In general, pwMS are more stressed and the reasons for this are not only obvious but potentially modifiable.

The main stress hormone is cortisol. Cortisol works via glucocorticoid receptors, which are found all over the body including the hippocampus, amygdala and frontal cortex, three brain regions involved in memory and emotions. Chronic stress is associated with reduced volume and malfunction of these areas. In pwMS, these areas may already be damaged from MS lesions, which increases the MS brain’s vulnerability to chronic stress. So if you want to improve MS outcomes you can’t ignore the SDoH and chronic stress. Do you agree?

This is why I have been promoting the marginal gains philosophy to the management of MS, which is based on Sir David Brailsford approach to competitive cycling and is the reason why the British cycling teams has been so dominant in the last two decades.

“The whole principle came from the idea that if you broke down everything you could think of that goes into riding a bike, and then improved it by 1%, you will get a significant increase when you put them all together.”

Sir David Brailsford

“If we break down everything we can think of that goes into improving MS outcomes, and then improving each one by 1%, we will get a significant increase when we put them all together.”

Prof. Gavin Giovannoni

So when we launched our ‘no patient left behind’ motto at the first MS Academy ‘Raising-the-Bar’ meeting to address variation and inequalities in access to MS healthcare in the UK we included a workstream to tackle the SDoH. How we do this is currently being defined, but we have an ambitious programme of work. Whatever happens, we will need to involve the whole MS community, which includes readers of this blog. So if you have any ideas to tackle the SDoH please share them with us.

Lupien et al. The effects of chronic stress on the human brain: from neurotoxicity, to vulnerability, to opportunity. Frontiers in Neuroendocrinology April 2018, 49:91-105.

For the last five decades, science has managed to delineate the mechanisms by which stress hormones can impact on the human brain. Receptors for glucocorticoids are found in the hippocampus, amygdala and frontal cortex, three brain regions involved in memory processing and emotional regulation. Studies have shown that chronic exposure to stress is associated with reduced volume of the hippocampus and that chronic stress can modulate volumes of both the amygdala and frontal cortex, suggesting neurotoxic effects of stress hormones on the brain. Yet, other studies report that exposure to early adversity and/or familial/social stressors can increase vulnerability to stress in adulthood. Models have been recently developed to describe the roles that neurotoxic and vulnerability effects can have on the developing brain. These models suggest that developing early stress interventions could potentially counteract the effects of chronic stress on the brain and results going along with this hypothesis are summarized.

CoI: multiple

Twitter: @gavinGiovannoni Medium: @gavin_24211

MS and the Inverse Care Law at 50

Barts-MS rose-tinted-odometer: ★

Variation in access to good medical care and better outcomes has never been higher in high-income countries such as the UK. Variation is simply a euphemism for inequality. The MS community in the UK realised this a few years ago, which prompted us to launch our ‘Raising the Bar’ initiative to address inequality in access to healthcare for people with MS living in the UK.

With this as a backdrop, it is worth reflecting on the 50th anniversary of the publication of Julian Tudor Hart’s paper “The Inverse Care Law”, which was published in The Lancet on the 27th Februrary 1971. The article opens with the following lines:

“The availability of good medical care tends to vary with the need for it in the population served. This inverse care law operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced.”

The Lancet is celebrating the 50th anniversary of the publication of Hart’s seminal paper with a hard-hitting editorial, which I would urge you to read.

Editorial. 50 years of the inverse care law. Lancet 27th Feb 2021.

Excerpts:

…. Globally, letting market forces dictate health care is still a major contributor to inequity—private health care can only be accessed by those who can afford to pay.

….. In many countries, social care and long-term care are managed by private providers too.

….. Although health care is widely endorsed as a basic human right, the systems that provide it inequitably embody capitalism at its worst, where the wealthy benefit, leaving behind those most in need.

What are we trying to do with our ‘Raising the Bar’ initiative? We simply want no patient with MS to left behind. Our programme of activities has coalesced around five main workstreams.

(1) The ‘Data & Audit’ workstream is focusing on measuring the wide variation in MS services in the UK. We hope the data will then be used as a catalyst for change, i.e. new business cases for service development.

(2) The ‘Patients as partners’ workstream is the improve health literacy amongst pwMS;p to help them navigate the NHS. There is compelling data showing that people with chronic disease who are engaged with their disease and its management do better, both in terms of health outcomes and improved quality of life. Similarly, when it comes to self-monitoring, self-management and behavioural interventions, which will be essential to transform MS outcomes we will need pwMS to become true partners in raising the bar.

(3) The ‘Wellness, lifestyle & social determinants of health’ workstream is promoting the holistic management of MS. This workstream focuses on wellness and lifestyle interventions to maximise brain and physical health. This workstream is also working on ways the MS community can address the social determinants that dominate health outcome in other disease areas; we are sure it is no different in MS.

(4) We acknowledge that if we want no patient to be left behind we are going to need a new generation of leaders; people with the vision, energy and drive to make the changes necessary to make our MS services equitable and valuable. This is why we have launched a ‘leadership programme’ to provide HCPs working in MS with the necessary leadership skills. Yes, not everybody is born a leader. Effective leadership skills need to be learnt.

(5) Finally, we have a workstream that addresses UK infrastructure such as ‘national registers and research’ studies that will provide the evidence base to change or implement new practices across the country.

So if you are a healthcare professional working in MS you need to please join the MS Academy and become a part of our raising the bar initiative. With the waning of the COVID-19 pandemic the NHS promises to be more responsive to innovation, more inclusive and wants to address both inequality and it causes. I think there is no better time than now to make a difference.

If you want to hear more about what we are trying to do please log into the MS Trust’s virtual conference. In the Q&A session tomorrow afternoon we will be addressing many of these issues.

The following are my discussion points for my brief 10-minute introduction.

CoI: multiple

Twitter: @gavinGiovannoni Medium: @gavin_24211

Time is Brain

So what has the UK’s poor performance in relation to cancer survival has to do with MS? A lot. These cancer statistics are collected as part of a national audit and are a bellwether for NHS services in general. If we had national MS statistics they would indicate similar problems, i.e. delays, delays, more delays and poorer outcomes. This is why we wrote a policy document ‘MS Brain Health: Time Matters’ to try and get the MS community to treat MS more urgently and effectively. This is also behind the motivation of our ‘MS Service Provision – Raising the Bar’ initiative to improve MS services and outcomes across the country.

I would be interested to know if the same issues exist with MS as the do with cancer diagnosis and treatment?

How long did it take to see your GP?

Did you feel you were wasting your GP’s time?

Did your GP interpret your initial symptoms correctly?

Were you promptly referred to see a neurologist?

How many GP visits did it take to get a neurology referral?

Were you forced to go via accident and emergency to see a neurologist?

How long did you wait to see a neurologist?

How long did it take to get a diagnosis of MS?

How long did it take to be started on treatment?

Are you being monitored for subclinical MRI activity with annual MRI scans?

Have you been offered escalation therapy or an immune reconstitution therapy?

Were you involved in the decision making around your treatment?

Etc.

These are the kinds of data we need via a national MS audit to benchmark MS services. The idea is to use the data to get rid of unnecessary variation in the provision of MS services.

Ruth Thorlby. UK’s poor performance on cancer survival. BMJ 2019;367:l6122

Excerpts:

…. the UK had the lowest five-year survival rates for four out of seven cancers….

…. If international variations in cancer survival are real and represent important differences in healthcare systems, what have ICBP studies revealed about their causes? A 2015 survey of around 19 000 people aged ≥50 found that public knowledge of possible cancer symptoms was not substantially worse in the UK than in other countries, but people in the UK were more likely to worry about wasting their general practitioner’s time (34% agreed with this in the UK compared with 9% in Sweden)…..

….. A parallel study of GP referral practices across countries found an association between higher survival rates and GPs’ willingness to investigate or refer quickly, which led some to argue that health systems where GPs have a gatekeeping role were more likely to have poorer cancer outcomes….

…… Although differences between countries existed in the time it took for patients to see their GP for the first time and in time to onward referral, diagnostic tests, initial diagnosis, and start of treatment, these were not obviously associated with survival differences. Each country had a long “tail” of patients waiting many months to start treatment…..

….. Closing the gap between the UK and other countries will require further progress in all four devolved countries. In England, the NHS Long Term Plan, published in early 2019, contains a comprehensive plan for improving cancer services, including multiple strategies for earlier diagnosis with the aim that by 2028, 75% of cancers will be diagnosed at stage 1 or 2. This is ambitious in the current climate…..

…… Interviewees for our 2018 report Unfinished Business were clear that the 2012 Health and Social Care Act brought unwanted organisational upheaval—for example, to cancer networks. A period of relative austerity in the English health service since 2012 has magnified other problems too. These include worsening workforce shortages in essential professions (such as general practice, diagnostics, and specialist nursing), the diversion of capital funding into everyday expenditure at the expense of maintenance and investment in new equipment, and, more broadly, a short term approach to planning services. Without tackling these fundamental problems, England will struggle to make its contribution to closing the survival gap between the UK and other countries…

CoI: multiple

Inequality

Prof G why the sudden and recent fixation with inequality?

There is overwhelming evidence that many health outcomes, including life expectancy, infant mortality, obesity, cancer survival rates, suicide, addiction and many more are linked to the level of economic inequality within society. In short, greater economic inequality leads to worse health outcomes.

Inequality does not necessarily refer to poverty, but relative poverty in society. For example, somebody in the lowest decile of the income distribution of a rich country such as the UK may not be considered poor by international standards, but relative to other people in the UK they are poor.

If you are interested in understanding more about this can I suggest you read Danny Dorling’s book “Injustice: Why social inequality still persists”. In this book, he uses the example of not be able to go on a family holiday as been a good indicator of the ‘have-nots’. The corollary is being able to afford an annual family holiday in modern Britain defines you as being one of the ‘haves’.

Why inequality results in poor health outcomes is complex. Michael Marmot argues in “The Health Gap: The Challenge of an Unequal World” that it causes chronic stress that results in poor outcomes. Please note stress is a biological response and can be measured; when people are stressed they produce excessive cortisol (a steroid) that then triggers a biological cascade that drives many disease processes and behavioural responses. The implications of this are that at a population level stress is bad and to improve outcomes you need population-based interventions to reduce stress. The latter is easier said than done when you have at least half the political establishment pushing a neoliberal (market) agenda that has been shown to increase inequality.

How does this relate to MS? At the moment we are not sure if inequality affects MS outcomes, but we suspect it does. Many comorbidities associated with inequality, such as smoking, obesity, hypertension, diabetes, stroke and myocardial infarction are associated with a worse MS prognosis. In addition, healthcare literacy and healthcare utilization are also linked to inequality and this is very relevant to MS.

To address this data gap we are starting a programme of work in the UK to investigate inequality and whether or not it is impacting on MS practice, MS outcomes and access to MS services. Although we started this at Barts-MS the main body of work will be done under one of the MS Academy workstreams we have defined as part of our ‘Raising the Bar’ initiative. Please note this is not just about defining and measuring inequality in MS Service provision and use, but implementing service change to make sure no MSers are left behind.

I note many commentators on this blog don’t like us highlighting political issues and would prefer us to focus on science. I would argue healthcare is politics and politics is health. If you are an HCP you can’t practice your trade without getting involved with politics or at least having a position on political issues.

The one positive outcome for me from the Brexit debacle is that it has made me realise that I didn’t have the background knowledge to have an informed opinion on Brexit and the reasons for Brexit. As a result of the self-exploration Brexit triggered (see Medium post), I have become an amateur economist, behavioural psychologist and geopolitician. All this has changed my worldview. This is why we have launched our #ThinkSocial campaign to raise awareness and make sure every HCP working in the MS space understands how inequality impacts on their patients and rather than accepting the status quo they should do something about it.

CoI: multiple

Potential leader?

Earlier this year I asked the question “why should someone with MS who lives in place B get a different service to someone who lives in place A?” and argued that variance, when it comes to the provision of healthcare services, is a euphemism for inequality, representing the ‘haves’ and ‘have-nots’ in society. This was a prelude to our ‘Raising the Bar’ meeting in Birmingham. We have set an ambitious programme of work for the next three years and it is exciting to see the MS Academy who is organising the workstreams becoming de-facto the natural home in the UK for HCPs with a specialist interest in MS.

The following are our Raising-the-Bar workstreams and the current leads:

QUALITY AUDIT – Jeremy Hobart/Sue Thomas/MS Society/MS Trust ….
BIG DATA – David Rog/Joela Mathews ….
SOCIAL DETERMINANTS OF HEALTH – Helen Ford/Gavin Giovannoni ….
PATIENT PARTNER PROGRAMME – Shift.ms ….
HOLISTIC MANAGEMENT OF MS – Agne Straukien/TBC ….

To make these workstreams happen we are launching a leadership programme to train the next generation of collaborative leaders in the MS Space to make these workstreams happen and realise our dream of a better deal for people living with MS in the UK.

To navigate the landscape of MS service provision in the UK, effective leadership is essential. However, the skills required to become a leader capable of impactful change are suboptimally developed at a time when they are most needed. The MS Academy has recognised this critical training gap and launched a 6-month multifaceted leadership programme tailored to MS experts.

The goals of the leadership programme are to (1) identify and develop future leaders from the MS field who have little leadership experience, (2) develop and implement a mentoring program between participants and established leaders and (3) enhance skills of those who have already assumed or are about to assume leadership roles within their Institutions, the MS field, and, more broadly, the field of neurology.

The programme will be run by Prof Gabriele De Luca (Consultant Neurologist, Oxford) and Barbara Hoese (Pentecore Coaching, Minnesota). Gabriele is an alumnus of the AAN emerging leaders leadership programme and is passionate about the field himself and Barbara set-up and runs the AAN emerging leaders programme.

So if you have what it takes to be a next-generation leader and want to apply for the leadership course give it a go. We need young motivated people to realise our dreams. The skills you learn will allow you to do and accomplish extraordinary things.

Please see the MS Academy website for more details.