Inequality

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

#MSCOVID19: inequality

We all focus on the obvious risk factors that predict who will and who won’t die of severe COVID-19, but the one that needs a deep think is deprivation the main social determinant of health. The latest data that has just been released from the ONS (Office for National Statistics) is a grim reminder that survival during COVID-19 is not only dependent on physical factors but social factors as well. In reality, the physical and the social are inseparable from each other because they depend on each other, for example, living in a poor area often means poor access to outdoor areas that promote physical activity. If you are interested in reading more on this I would suggest reading Micheal Marmot’s book ‘The Health Gap: The Challenge of an Unequal World‘.

I work at the Royal London Hospital, where our local patch consists of three boroughs Whitechapel, Hackney and Newham. It was quite alarming that Newham had the highest age-standardised COVID-19 rate with 144.3 deaths per 100,000 population followed by Brent with a rate of 141.5 deaths per 100,000 population and Hackney was third with a rate of 127.4 deaths per 100,000 population.

The following are the headline figures from the ONS:

Between 1 March and 17 April 2020, there were 90,232 deaths occurring in England and Wales that were registered by 18 April; 20,283 of these deaths involved the coronavirus (COVID-19).
When adjusting for size and age structure of the population, there were 36.2 deaths involving COVID-19 per 100,000 people in England and Wales.
London had the highest age-standardised mortality rate with 85.7 deaths per 100,000 persons involving COVID-19; this was statistically significantly higher than any other region and almost double the next highest rate.
The local authorities with the highest age-standardised mortality rates for deaths involving COVID-19 were all London Boroughs; Newham had the highest age-standardised rate with 144.3 deaths per 100,000 population followed by Brent with a rate of 141.5 deaths per 100,000 population and Hackney with a rate of 127.4 deaths per 100,000 population.
The age-standardised mortality rate of deaths involving COVID-19 in the most deprived areas of England was 55.1 deaths per 100,000 population compared with 25.3 deaths per 100,000 population in the least deprived areas
In Wales, the most deprived areas had a mortality rate for deaths involving COVID-19 of 44.6 deaths per 100,000 population, almost twice as high as the least deprived area of 23.2 deaths per 100,000 population.

On average the most deprived areas of the country had more than double the death rate than people in the least deprived areas. In the MS Academy webinar on Wednesday on ‘Preparing to get COVID-19’, I said there was nothing you could do about poverty or your level of deprivation in the short term, but maybe this is the wrong attitude to have. Although inequality is political and something the government needs to challenge with legislation there are lots of things we as individuals can do to tackle the problem.

To tackle inequality and its effect we need to start locally. Be mindful of its presence and how it impacts on health. Try to invest in local community projects and make everyone feel part of a community. It is remarkable to see how this is happening on such a large scale across the country in response to COVID-19. We need to make sure it continues post-COVID-19. We now realise the value of community that goes beyond the GDP of the country. Community and looking after each other and the health benefits of doing so are much more valuable than GDP.

As part of our ‘Raising the Bar‘ initiative, I am co-leading the workstream with Dr Helen Ford (Leeds) on the Social Determinants of Health and how they impact on the treatment and outcomes for pwMS. Our motto is that ‘no patient with MS should be left behind’. We have some interesting ideas that we are exploring with the wider MS community and would appreciate any input and help from you. The one that worries me the most at the moment is food security. We know that many pwMS in the UK are poor and many have problems paying for food and that the COVID-19 epidemic has exacerbated this. So if you know someone in your community with MS who is vulnerable please drop them a line and simply ask is there anything you can do to help. A friendly voice or helping with a food parcel delivery from the local food bank may be all that is required.

We have a grant application being processed at the moment to try and get an online platform set-up to help pwMS, who are part of Barts-MS, connect in a meaningful and helpful way. When I look at the statistics of COVID-19 from our local Burroughs we need this to happen sooner rather than later.

When the dust settles post-COVID-19 I suspect that high-income countries with the greatest inequality will have the highest per capita death rates. At the moment it looks like the US and the UK are heading for the top of the leaderboard and it comes as no surprise that the US and UK have relatively high Gini* indices compared to other high-income countries.

Some pundits argue that the relatively poor response of the UK and US to COVID-19 has more do with our slow response and preparation, despite knowing that a SARS pandemic was likely in the near future. Others argue is that it relates to our partisan political systems and that other democratic system, for example in most of Europe, make for less combative politics and a more common-sense consensus that is responsive to the needs of the people rather than vested interest groups. Whatever the reason or reasons for the lacklustre response of the UK compared to other European countries to COVID-19 we are going to have to make sure we become a more compassionate society post-COVID-19 and aspire to be a more inclusive society. Do you agree?

* The Gini index or coefficient is a measure of the income or wealth distribution of a nation’s people and is the most commonly used measurement of inequality. A Gini index of zero is perfect equality where everyone has the same income. A Gini index of one (or 100%) represents maximal inequality where only one person has all the income or consumption, and all others have none.

CoI: none

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

Reinventing the wheel or the 4×4

We were rightly criticised last year for holding a meeting that highlighted the problem of variance in the provision of MS services, in the NHS. without a plan and vision about how to change things. I hope we have listened to you. The follow on meeting that we are hosting next month (8th-9th July) has a more ambitious agenda; it will even come with a 3-year action plan.

I have always made the argument that variance, when it comes to the provision of healthcare services, is a euphemism for inequality and that simply represents the haves and have-nots in society and the world. Why should someone with MS who lives in place B, or country Y, get a different service to someone with lives in place A or country X? On the other side of the coin, variability creates the engine for change; it is the catalyst for people to do something about the poor services they are providing or receiving; that is assuming they know about the quality of their service and are willing to do something about it.

My colleagues have told me that I shouldn’t beat myself up too much over the problems and criticisms of our first meeting; after all, it was very instructive in that it:

Brought us together as a wider MS community and allowed us to recognise and reflect on the challenges we face in addressing the variance in the NHS.
The meeting was inclusive in that there was no hierarchy in terms of the importance of the people who deliver MS services. We identified ourselves as equals, or partners, and included people with MS.
The meeting made us realise that we have cognitive biases that need to be addressed to make the community inclusive and more diverse. Diversity of ideas is going to be the catalyst for the next phase of our project.
We also realised that variance is not necessarily bad. We need some variance and ways to measure it so that the outliers at the upper end stimulate change. The next meeting is called ‘Raising the Bar’ and refers to improving services across the board.
The meeting also allowed us to get away from the NHS rat race and provided quality thinking time, i.e. time to reflect on the task at hand. This has allowed us to set priorities or specific work streams that will allow us to set key objectives for the programmes of work going forward.

As the chair of the committee, I have been asked to set out my vision for the initiative and define what success will look like for this initiative. To make it tangible I have defined targets at year 1, 2 and 3 and beyond.

YEAR 1

At the end of next year, I would expect all participating centres to actively engage in a national quality audit. This will include providing metrics on the NICE quality standards and several other new metrics that will allow us to assess how good or bad we are at achieving what we have set out to achieve.

My vision is 4×4, i.e. for 75% of patients with uncomplicated MS to be diagnosed within 4 weeks of the specialist MS team receiving a referral letter with a diagnosis of suggestive of MS and for 75% of pwMS, eligible for DMTs under the NHSE guidelines, to be have been offered, counselled and given a date for starting a DMT. Is this too much to expect? These time frames are compatible with our International Brain Health standards so why wouldn’t we aspire to meet them?

YEAR 2

At the end of year 2, all participating centres will have a patient partner programme in place to upskill pwMS on how to navigate their local MS services and how to self-monitor and self-manage their MS. This programme will be developed in partnership with patient organisations and will depend on local champions to make it happen. We are in an era in which knowledge has been democratised. Why shouldn’t people with MS participate in providing their own healthcare and contributing to their own healthcare?

YEAR 3

Participating centres will be working differently and managing MS holistically. This will include programmes to screen and manage comorbidities and to promote lifestyle interventions. Participating centres will collect data on these new activities as part of the annual national audit. As part of this holistic management of MS, there will be a ‘no patient left behind’ philosophy embedded in all MS services. This will require systems to make sure that all people with MS, who are covered by a particular service, will have access to that service. We don’t want vulnerable, less educated or less well off patients to be disadvantaged by the service.

LEADERSHIP

It was clear to us at last year’s meeting that for our vision to be realised we need a new generation of leaders to make things happen. We are therefore proposing putting in place a leadership training programme to equip people with the skills to make things happen. The leadership programme will be small and selective and will focus on doing, i.e. as part of the programme delegates will be expected to participate in and complete a national project. This will be run by Gabriele De Luca who is a shining example of what good leaders can do. Gabriele has experience from the AAN young leadership programme and is passionate about the field himself. It may be worthwhile coming to, and participating in, our meeting just to access the leadership training programme.

SHARING BEST PRACTICE

As always the wheel has usually been invented. Most ideas are not new, but how they have been tested and implemented may be new. We are proposing to use the Variance platform to share best practice. Why reinvent something if it already exists? We expect all centres to share their successes and failures so that others can learn from them. This will hopefully allow MS centres to share their materials and experiences with other centres so as to raise the bar for everyone and to create a collegiate atmosphere. The advantage the MS Academy has is that we already have the infrastructure to make sharing relatively easy.

So if you are reading this post and are attending this year’s meeting don’t be shy; please submit a poster to the meeting on something in your service that you are proud of, or even something you are not so proud of. We will select 3 or 4 posters for a platform presentation to allow wider discussion.

If you have not registered already please do so now there are a few remaining places.