I am sure you have all read or heard a version of Goldilock’s and the three bears. Goldilocks finds one of the bears’ beds too hard, one too soft and the final bed is just right, which allows her to lie down and fall asleep.
At the moment the United States is having an existential crisis about the cost and value of its healthcare system. A series of articles in the New England Journal of Medicine (NEJM) is asking whether or not the massive amount of money that the US spends on healthcare is delivering good value for money. It is quite clear that the US is an outlier when you look at a simple integrator of population health outcome (see figure below).
At the same time that the NEJM is reflecting on the poor value that the US healthcare system delivers there are fundamental changes happening to healthcare delivery, which are being rapidly adopted because of the impact of the coronavirus pandemic.
As a person with a chronic disease is your MS being under-managed, over-managed or managed just right? Maybe you don’t know how to answer this question, because you don’t know what an ideal MS management pathway looks like.
A related issue is a fundamental battle been two ideologies that is currently playing out across the globe; the socialist European model of healthcare versus the neoliberal or capitalist US model of healthcare. Should the management of MS at a population level be value-based, i.e. based upon the utilisation of limited resources that deliver value by improving the length of life and/or increasing the quality-of-life experienced by a population of people with MS? This implies that the focus is on the population and not the individual.
‘Skint Britain: friends without benefits’ looks at the rollout and impact of the new Universal Credit scheme for British people who are unemployed or unable to work. The ‘big idea’ behind universal credit is to incentivise people who are unemployed to work or at least to be shown to be actively seeking work in order to ‘earn their benefits’. The scheme makes some basic assumptions that the people need to be literate and be able to use a web or smartphone based database to log their job seeking activities. One of the young men on the programme clearly had behavioural issues at school and was excluded from education; the result is a 21-year-old man who is unable to read and write. He has been let down by the system and the very same system is now excluding him yet again. He seemed to like animals and was using his pet dog to help him forage and catch wild moles, squirrels and rabbits, to feed himself and his girlfriend. What type of society are we living in that in 2019 we are forcing some of our citizens to forage for food? Not to mention the increasing use of food banks to survive.
Economists glibly refer to Britain as being post-industrial and in the throes of the 3rd industrial revolution, a euphemism for automation and un- or under-employment, without considering what we are doing to society. We are now a society of haves and have-nots; a society that is more divided than ever. The have-nots, who are touchingly, albeit tragically, portrayed in this Channel 4 documentary have little hope of getting out of the economic trap society has created for them.
On a personal note, I am seeing the impact of Britain’s new social policies on patients in my care. As you are aware most of my patients with MS are unemployed. As a result, a large proportion of my patients are on benefits and depend on these to survive and participate in society. A typical example is Susan, a patient of mine with MS, who I saw in clinic last week. Susan has secondary progressive MS and lives alone in a small flat in an East London tower block. Susan’s benefits were cut last year and as a result she is finding it increasingly difficult to come out each month on her meagre allowance. The person who reassessed Susan for her benefits is expecting Susan to look for and find work. Susan is semi-skilled and has an EDSS of 6.5 and is probably 12-24 months off needing a wheelchair. Any thinking, compassionate, person should know that Susan is not going be able to find and do any meaningful work; not at this stage of her MS.
Before her benefits were cut Susan was able to afford to travel and visit her daughter and two grandchildren in the Midlands every month. This visit was Susan’s highlight of the month. Susan can’t afford the train fare anymore. Susan rarely goes out anymore and is becoming increasingly isolated. Not surprisingly Susan is depressed. Simply asking Susan about her typical day was enough to reduce her to tears. Susan is also being let down by the system. What Susan needs are meaningful connections and interactions; friends and family to make her feel loved and wanted. Should the neurologist’s job extend into the social domain of their patients? I would argue yes. If we are to adopt a treatment target that maximises the lifelong brain health of our patients we can’t ignore the social determinants of health, which have a massive impact of outcomes.
To help people like Susan and our other patients we are exploring several initiatives this year to try and increase the social capital of our patients. We are not sure what our social capital programme will look like, but is quite clear that we can’t simply manage the medical side of MS and ignore the social consequences of living with this disease in modern Britain.
Why don’t you support private prescribing and HSCT abroad?
The social media response to yesterday’s Barts-MS Hangout on HSCT has been rather mixed. A lot of commentators are being critical of us for creating too many hurdles regarding the access to HSCT and that we shouldn’t stop our patients going abroad for treatment. From my perspective, going abroad or to private units in the UK for HSCT is private healthcare at its worst. The countries who offer private HSCT, on a fee-for-service basis, are some of the countries with the largest health inequities in the world. These private HSCT units are in it for the money and hence are not that selective in whom they will treat. Can you pay? If you say yes, then you can be treated next week, but only after you put down a large deposit.
The founding principles of the NHS and other socialist healthcare systems are that healthcare is a basic human right, therefore it should be free at the point of access and it must be equitable. Private HSCT, private prescribing and even off-label prescribing undermine these principles and this worries me a lot. This is why I can’t and won’t openly support my patients travelling abroad for HSCT; you need to understand that when it comes to access to healthcare I am card-carrying socialist.
We at Barts-MS have been pushing our Essential Off-Label list to improve access to treatments in resource-poor environments. The problem with this is that adoption of off-label prescribing is patchy at best and creates pockets of prescribing in a desert of limited access. The latter creates massive variances in prescribing and inequity. This is why we decided a few years ago to hand the baton of promoting an Essential DMT List, including HSCT, which is on our list, to the MSIF (Multiple Sclerosis International Federation).
The MSIF is an umbrella organisation representing all of the MS Charities from across the world and is therefore in the best position to endorse and promote an Essential DMT list. The MSIF made the strategic decision to go via the WHO Essential Medicines List (WHO-EML). Over the last 2 years, we have actively been working on this and I have had the privilege of co-chairing the MSIF WHO-EML Taskforce with Professor Brenda Banwell. We managed to get an international consensus on three DMTs (glatiramer acetate, fingolimod and ocrelizumab) to be considered for the WHO-EML. Please note HSCT did not make the shortlist mainly because we are trying to address the unmet need in resource-poor countries. Our application is now online and we hope the wider MS community get behind our application. Our application is more than about these three DMTs, it is a political campaign to get the WHO and the world to realise that MS is a problem across the globe; MS is not just a rich world disease. For example, did you know that there are more people with MS in India than there are in the UK?
So to our critics out there, we at Barts-MS have a wider responsibility to the MS community and to support the NHS and the pwMS living in the UK by trying as best we can to uphold the founding principles of the NHS.
